Your Kidneys and Covid – or – Covid and Your Kidneys

Thanks to an unidentified woman at The Virginia G. Piper Cancer Center who passed a telephone number on to me, Bear and I have appointments for both our first and second Covid vaccinations. That got me to thinking. In this time of Covid with its breathing problems, is Chronic Kidney Disease involved in some way? We know that Covid can cause Acute Kidney Injury, but this is different. It’s trying to find out if CKD can contribute to Covid. 

Respiratory Acidosis sprang to mind, probably because of the word ‘respiratory.’ We already know acidosis can be a problem for CKD patients, but does it contribute to Covid? I didn’t know, so I started my search for an answer at The National Center for Biotechnology Information.    

“Acid-base disorders are common in patients with chronic kidney disease, with chronic metabolic acidosis receiving the most attention clinically in terms of diagnosis and treatment. A number of observational studies have reported on the prevalence of acid-base disorders in this patient population and their relationship with outcomes, mostly focusing on chronic metabolic acidosis…. “ 

Okay, so we’ve established chronic metabolic acidosis is common in CKD patients, but what is that? The National Kidney Foundation explains: 

“The buildup of acid in the body due to kidney disease or kidney failure is called metabolic acidosis. When your body fluids contain too much acid, it means that your body is either not getting rid of enough acid, is making too much acid, or cannot balance the acid in your body.” 

And, of course, we know that chronic means long term as opposed to acute, which means sudden onset. 

But respiratory acidosis? Is that part of acidosis? MedlinePlus came to the rescue with an easily understood definition for us: 

“Respiratory acidosis is a condition that occurs when the lungs cannot remove all of the carbon dioxide the body produces. This causes body fluids, especially the blood, to become too acidic.” 

Let me think a minute to figure out how this is all connected. Got it!  Let’s go back to what the kidneys do for us. 

“Your kidneys remove wastes and extra fluid from your body. Your kidneys also remove acid that is produced by the cells of your body and maintain a healthy balance of water, salts, and minerals—such as sodium, calcium, phosphorus, and potassium—in your blood. 

Without this balance, nerves, muscles, and other tissues in your body may not work normally. 

Your kidneys also make hormones that help 

  • control your blood pressure 
  • make red blood cells  
  • keep your bones strong and healthy” 

Thank you to the National Institute of Diabetes and Digestive and Kidney Diseases for the above information. 

Aha! Carbon dioxide is a waste product even though the body produces it. The kidneys are tasked with removing wastes. CKD is a progressive decline in your kidney function for over three months. Decline as in don’t work as well. Oh, my. CKD can contribute to breathing problems with Covid. 

The January, 2021, issue of NDT [ Gail here: that stands for Nephrology, Dialysis, Transplantation] tells us: 

“Although not listed in initial reports as a risk factor for severe COVID-19, CKD has emerged not only as the most prevalent comorbidity conveying an increased risk for severe COVID-19, but also as the comorbidity that conveys the highest risk for severe COVID-19. The increased risk is evident below the threshold of eGFR that defines CKD and the risk increases as the eGFR decreases, with the highest risk in patients on kidney replacement therapy. Although CKD patients are known to be at increased risk of death due to infectious diseases, the factors contributing to their greater vulnerability for severe COVID-19 should be explored, as these may provide valuable insights into therapeutic approaches to the disease in this patient group. It is presently unknown if earlier categories of CKD (G1/G2, i.e. patients with preserved kidney function but with increased albuminuria) are also at an increased risk of severe COVID-19, and this must be explored. Moreover, the recognition that CKD significantly contributes to the severity of COVID-19 should now result in focused efforts to improve outcomes for the 850 million global CKD patients.”  

Uh-oh, do we panic now? No, no, no.  We protect ourselves. The Centers for Disease Control and Prevention [CDC] has been extremely vocal about this: 

“It is especially important for people at increased risk of severe illness from COVID-19, and those who live with them, to protect themselves from getting COVID-19. 

The best way to protect yourself and to help reduce the spread of the virus that causes COVID-19 is to: 

Limit your interactions with other people as much as possible. 

Take precautions to prevent getting COVID-19 when you do interact with others. 

If you start feeling sick and think you may have COVID-19, get in touch with your healthcare provider within 24 hours.  If you don’t have a healthcare provider, contact your nearest community health center or health department.” 

The CDC further explains: 

“Three Important Ways to Slow the Spread 

Wear a mask to protect yourself and others and stop the spread of COVID-19. 

Stay at least 6 feet (about 2 arm lengths) from others who don’t live with you. 

Avoid crowds. The more people you are in contact with, the more likely you are to be exposed to COVID-19.” 

By the way, the CDC acknowledges that CKD raises your risk of getting Covid… as does diabetes… and possibly hypertension. These are also the two primary causes of CKD.  

Until next week,

Keep living your life!

It’s Not Just Scaly Patches

Did I ever mention that I have latent psoriasis? Or that it has something to do with Chronic Kidney Disease? Hmmm, well maybe it’s time… not that most people ever want to admit they have unsightly psoriasis. 

I realize not everyone knows what that is, so we’ll start with a definition from the Mayo Clinic

“Psoriasis is a skin disease that causes red, itchy scaly patches, most commonly on the knees, elbows, trunk and scalp. 

Psoriasis is a common, long-term (chronic) disease with no cure. It tends to go through cycles, flaring for a few weeks or months, then subsiding for a while or going into remission. Treatments are available to help you manage symptoms. And you can incorporate lifestyle habits and coping strategies to help you live better with psoriasis.” 

Now you can see why people might be lax to mention they have psoriasis. It almost appears as if you hadn’t been taking care of your personal hygiene, and no one enjoys looking at those sores. My father had it in large, constant patches, but I grew up seeing it on him and never questioned what it was or how he got it. Maybe that’s why I’m so open about having it myself. 

Oh, yes, latent. That just means it’s there, but it hasn’t made itself known yet. 

I went to WebMD for an explanation of the symptoms of psoriasis. 

“Plaques of red skin, often covered with silver-colored scales. These plaques may be itchy and painful, and they sometimes crack and bleed. In severe cases, the plaques will grow and merge, covering large areas. 

Disorders of the fingernails and toenails, including discoloration and pitting of the nails. The nails may also crumble or detach from the nail bed. 

Plaques of scales or crust on the scalp.” 

I remember a dermatologist telling me a long time ago that this skin disorder causes skin cells to produce 10 times faster than usual and asking me if I had psoriatic arthritis. I looked at him blankly. That resulted in a trip to the rheumatologist.  

Yes, that’s what I had. Arthritis.org was extremely clear about just what psoriatic arthritis [abbreviation: PsA] is: 

“Causes 

PsA (like psoriasis) is an autoimmune disease, which means the body’s immune system mistakenly attacks healthy tissue, causing inflammation and pain and resulting in damage. Researchers aren’t sure why some people develop PsA. They think it’s a combination of having certain genes, which makes them more likely to develop the disease, and being triggered by something in the environment, like an infection, stress, physical trauma or another factor.  

Symptoms: 

Skin: 

Itchy, painful red patches or a silvery white buildup of dead skin cells; most commonly on the knees, elbows and scalp, although a rash can occur anywhere on the body. It is not contagious. [Gail here: same symptoms as psoriasis] 

Joints/Spine: 

Mainly occurs in the fingers (in the joints closest to the nail), wrists, ankles and knees. Symptoms such as pain, tenderness, warmth and swelling, may affect different sides of the body (right hand and left knee). This may be referred to as peripheral arthritis. Sometimes one entire, individual finger or toe will swell up, making it painful and hard to bend. This is referred to as dactylitis. Pain and stiffness in the low back, buttock can also occur. Sometimes the neck and hips are affected and this may be referred to as spondylitis or axial arthritis.  

Nails: 

Cracking, pitting, white spots and lifting from the nail bed can occur. This may be referred to as nail disease. 

Enthesis (plural, entheses): 

Inflammation and swelling of one or more entheses, which are the places in the body where a tendon or ligament connects with a bone. Common spots include at the back of the heel and the bottom of the foot. This is called enthesitis.  
 
Many people with psoriatic arthritis get very tired (fatigue) and some may have a low-grade fever. Symptoms may come and go. A period of increased inflammation and worsening of other symptoms is called a flare. A flare can last for days or months.”   

And now for the biggie- What does any of this have to do with CKD? 

“’Psoriasis is an autoimmune disease of the skin that causes inflammation throughout the entire body,’ says Dr. Aamir Memon, nephrologist on staff at Advocate Sherman Hospital in Elgin, Ill. ‘When you have an autoimmune disease, you have antibodies in your blood, which can deposit anywhere in the body, such as your heart and kidneys. The increased inflammation increases the risk of atherosclerosis (hardening of the arteries) and organ damage.’ 

According to Dr. Memon, many patients with moderate to severe psoriasis take medications like Cyclosporine or Methotrexate as treatment. However, side effects from these medications include kidney problems. 

‘Since psoriasis has effects on the kidneys, it would intuitively make sense to control the inflammation to prevent further worsening of the kidneys,’ Dr Memon says. ‘Further studies are needed to evaluate if that is the case and as to what medications are best to decrease inflammation and prevent or halt kidney disease.’” 

Thank you to health enews at Advocate Aurora Health for the above information. This is a new site for me, so allow me to introduce you to them via their website: 

“health enews is the Midwest’s go-to source for timely, patient-centered and credible health news and information. Our goal is to provide readers with relevant and engaging articles and stories as part of our commitment to building healthy and informed communities across Illinois, Wisconsin and beyond. 

health enews is produced by a team of seasoned journalists and public affairs professionals from across Advocate Aurora Health.” 

From my 11 years of blogging about CKD, I’m beginning to accept that it is all connected. What happens to one part of the body does, indeed, affect the other parts of the body. Now you know how CKD and psoriasis are related, in case you’d ever wondered. 

You may have noticed there are no URLs in the blogs lately. Press control and click on the name of the organization instead. They are linked to the articles mentioned.

Until next week, 

Keep living your life!  

One Thing is Not Like the Other

I’d always thought that albuminuria and proteinuria were one and the same since the words are often use interchangeably. Guess who was wrong. While ‘uria,’ means:  

“a combining form with the meanings ‘presence in the urine’ of that specified by the initial element (albuminuria; pyuria), ‘condition of the urinary tract,’ ‘tendency to urinate as specified (polyuria).’’ 

according to Dictionary.com at https://www.dictionary.com/browse/-uria, albumin and protein are two different substances. 

I know they are closely related, but yet… still not the same. Let’s take a look at albumin: 

“Your liver makes albumin. Albumin carries substances such as hormones, medicines, and enzymes throughout your body.” 

Thank you to University of Rochester’s Medical Center’s Health Encyclopedia at bit.ly/3agVUO8 for this information. 

Wait a minute, the liver? I thought we were dealing with the kidneys. Let me think a minute. I know: we’ll go to the National Institutes of Health’s National Institute of Diabetes and Digestive and Kidney Disease. This is what I found at bit.ly/3pDfmer

“Albuminuria is a sign of kidney disease and means that you have too much albumin in your urine. Albumin is a protein found in the blood. A healthy kidney doesn’t let albumin pass from the blood into the urine. A damaged kidney lets some albumin pass into the urine. The less albumin in your urine, the better.” 

Oh, so the albumin itself doesn’t harm the kidneys, but is a sign of kidney disease. Got it. But it’s a protein. Let’s take a look at the protein part of proteinuria and see if we can figure this out. 

In What Is It and How Did I Get It? Early Stage Kidney Disease, I defined protein as: 

“Amino acids arranged in chains joined by peptide bonds to form a compound, important because some proteins are hormones, enzymes and antibodies.”   

Look at that: hormones and enzymes are mentioned in both definitions. It would make sense to define these two words now. According to my first book on Chronic Kidney Disease, 

“Hormones: Gland produced chemicals that trigger tissues to do whatever their particular job is.” 

I need some examples. Hormone.org has an extensive list.  Some hormones you might recognize are: 

  • Adrenaline 
  • Cortisol 
  • Erythropoietin 
  • Estrogen 
  • Glucagon 
  • Insulin 
  • Melatonin 
  • Oxytocin 
  • Serotonin 
  • Testosterone 
  • Vitamin D 

What about enzymes? The Merriam Webster Dictionary can help us out here. 

“any of numerous complex proteins that are produced by living cells and catalyze specific biochemical reactions at body temperatures” 

I don’t know about you, but I’m better with examples. I took a short list from MedicalNewsToday: 

  • Lipases 
  • Amylase 
  • Lactase 

These terms may look familiar from your quarterly blood tests. 

I still don’t get it. If albumin is a protein, why isn’t it considered proteinuria? MDEdge, a new site for me, but one that seems credible, explains: 

“Proteinuria and albuminuria are not the same thing. Proteinuria indicates an elevated presence of protein in the urine (normal excretion should be < 150 mg/d), while albuminuria is defined as an ‘abnormal loss of albumin in the urine.’…. Albumin is a type of plasma protein normally found in the urine in very small quantities. Albuminuria is a very common (though not universal) finding in CKD patients; is the earliest indicator of glomerular diseases, such as diabetic glomerulosclerosis; and is typically present even before a decrease in the glomerular filtration rate (GFR) or a rise in the serum creatinine…. 

Albuminuria, without or with a reduction in estimated GFR (eGFR), lasting > 3 months is considered a marker of kidney damage. There are 3 categories of persistent albuminuria…. Staging of CKD depends on both the eGFR and the albuminuria category; the results affect treatment considerations.” 

The important part to remember is that both are indicators of Chronic Kidney Disease. 

Switch of topics here. Remember KidneyX? That’s, 

“The Kidney Innovation Accelerator (KidneyX), a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN), is accelerating innovation in the prevention, diagnosis, and treatment of kidney diseases.”   

Well, they have an announcement for you: 

“The U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN) announced the eight winners of the KidneyX COVID-19 Kidney Care Challenge Round 1. The $300,000 challenge has identified solutions that could reduce the transmission of coronavirus among people with kidney disease and/or reduce the risk of kidney damage among people who contract the virus. 

‘We congratulate the Round 1 winners who have highlighted approaches to patient monitoring, patient education, and vaccine distribution,’ said HHS Acting Assistant Secretary for Health Rear Admiral Felicia Collins, MD, MPH. ‘We look forward to the subsequent round of rapid-response innovation that supports COVID-19 risk reduction in kidney patients and health professionals during the pandemic.’ 

Each winner will receive $20,000 in recognition of their solution…. The KidneyX Round 2 winners will be announced in February, 2021. 

COVID-19 Kidney Care Challenge Round 1 Winners 

The following submissions were selected as winners of the COVID-19 Kidney Care Challenge Round 1: 

  • 9 Remote Monitoring Platform to Reduce COVID-19 Risk for Hemodialysis Patients 
  • Free E-Learning Platform with CKD and COVID-19 Patient Education 
  • Immediate Rooming for Patients 
  • Canopy: the Next Generation, Reusable Respirator 
  • Characterizing and Targeting Vaccine Hesitancy Among End-Stage Kidney Disease (ESKD) Patients 
  • COVID-19 in Translation: Making Patient Education Accessible to Minorities 
  • The ‘Good Humoral’ Immunity Truck and Freezer Project 
  • Development of Telemedicine-Enhanced Peritoneal Dialysis Training Protocols During COVID-1″ 

Did you know that patients were involved in these projects? 

We’ve passed a sort of milestone with SlowItDownCKD: this is the 601st blog. If there were no Covid-19, I would invite you all to my house for a Renal Diet Bar-B-Q. We know that’s not going to happen any time soon, so – please – have a special meal at your home with those you love. Wear your masks, keep six feet apart, wash your hands often, keep it to a very small gathering of those who are in your pod (Our pod is very small, just Bear and me.), but have a good time anyway. 

Until next week, 

Keep living your life! 

Mg or Magnesium to You and Me

We usually think of Mg (mg) as the abbreviation for milligrams. Lately, I’ve been hearing a lot about Mg as the symbol for magnesium. In fact, a friend all the way across the country in Florida sent me an article about it from her local town paper. That got me to thinking. I haven’t written about magnesium in over three years. Has anything new been uncovered about this particular electrolyte? But first we need to know what I wrote about it in SlowItDownCKD 2017.  

“The medical dictionary part of The Free Dictionary by Farlex at http://medical-dictionary.thefreedictionary.com/magnesium tells us: 

‘An alkaline earth element (atomic number 12; atomic weight 24.3) which is an essential mineral required for bone and tooth formation, nerve conduction and muscle contraction; it is required by many enzymes involved in carbohydrate, protein and nucleic acid metabolism. Magnesium is present in almonds, apples, dairy products, corn, figs, fresh leafy greens, legumes, nuts, seafood, seeds, soybeans, wheat germ and whole grains. Magnesium may be useful in treating anxiety, asthma and cardiovascular disease; it is thought to prevent blood clots, raise HDL-cholesterol, lower LDL-cholesterol, reduce arrhythmias and blood pressure, and to help with depression, fatigue, hyperactivity and migraines.’ 

All this by an electrolyte that constitutes only 1% of extra cellular fluid? I’m beginning to suspect that magnesium is the under explained electrolyte. 

All right then, what happens if you have too little magnesium?

The U.S. Dept. of Health & Human Services of the National Institutes of Health at https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ lays it out for us: 

‘Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur …. Severe magnesium deficiency can result in hypocalcemia or hypokalemia (low serum calcium or potassium levels, respectively) because mineral homeostasis is disrupted….’ 

Well, who’s at risk for magnesium deficiency? The same source tells us: 

‘Magnesium inadequacy can occur when intakes fall below the RDA [Gail here today: RDA is the Recommended Dietary Allowances] but are above the amount required to prevent overt deficiency. The following groups are more likely than others to be at risk of magnesium inadequacy because they typically consume insufficient amounts or they have medical conditions (or take medications) that reduce magnesium absorption from the gut or increase losses from the body. 

People with gastrointestinal diseases 
The chronic diarrhea and fat malabsorption resulting from Crohn’s disease, gluten-sensitive enteropathy (celiac disease), and regional enteritis can lead to magnesium depletion over time …. Resection or bypass of the small intestine, especially the ileum, typically leads to malabsorption and magnesium loss …. 

People with type 2 diabetes [Gail again today: That’s me.] 
Magnesium deficits and increased urinary magnesium excretion can occur in people with insulin resistance and/or type 2 diabetes…. The magnesium loss appears to be secondary to higher concentrations of glucose in the kidney that increase urine output …. 

People with alcohol dependence 
Magnesium deficiency is common in people with chronic alcoholism…. In these individuals, poor dietary intake and nutritional status; gastrointestinal problems, including vomiting, diarrhea, and steatorrhea (fatty stools) resulting from pancreatitis; renal dysfunction with excess excretion of magnesium into the urine; phosphate depletion; vitamin D deficiency; acute alcoholic ketoacidosis; and hyperaldosteronism secondary to liver disease can all contribute to decreased magnesium status …. 

Older adults 
Older adults have lower dietary intakes of magnesium than younger adults …. In addition, magnesium absorption from the gut decreases and renal magnesium excretion increases with age …. Older adults are also more likely to have chronic diseases or take medications that alter magnesium status, which can increase their risk of magnesium depletion ….’” 

Okay, that was then. Let’s see if there’s more news now.  Oh, look at that! I found lots of goodies at https://ods.od.nih.gov/factsheets/Magnesium-HealthProfessional/ which is one of the same sites I used in 2017. I suggest you check this site for even more information about magnesium and your health. 

Table 1: Recommended Dietary Allowances (RDAs) for Magnesium  

Age Male Female Pregnancy Lactation 
Birth to 6 months 30 mg* 30 mg*   
7–12 months 75 mg* 75 mg*   
1–3 years 80 mg 80 mg   
4–8 years 130 mg 130 mg   
9–13 years 240 mg 240 mg   
14–18 years 410 mg 360 mg 400 mg 360 mg 
19–30 years 400 mg 310 mg 350 mg 310 mg 
31–50 years 420 mg 320 mg 360 mg 320 mg 
51+ years 420 mg 320 mg   

*Adequate Intake (AI) 
 

Table 2: Selected Food Sources of Magnesium  

Food Milligrams 
(mg) per 
serving 
Percent 
DV* 
Pumpkin seeds, roasted, 1 ounce 156 37 
Chia seeds, 1 ounce 111 26 
Almonds, dry roasted, 1 ounce 80 19 
Spinach, boiled, ½ cup 78 19 
Cashews, dry roasted, 1 ounce 74 18 
Peanuts, oil roasted, ¼ cup 63 15 
Cereal, shredded wheat, 2 large biscuits 61 15 
Soymilk, plain or vanilla, 1 cup 61 15 
Black beans, cooked, ½ cup 60 14 
Edamame, shelled, cooked, ½ cup 50 12 
Peanut butter, smooth, 2 tablespoons 49 12 
Potato, baked with skin, 3.5 ounces 43 10 
Rice, brown, cooked, ½ cup 42 10 
Yogurt, plain, low fat, 8 ounces 42 10 
Breakfast cereals, fortified with 10% of the DV for magnesium, 1 serving 42 10 
Oatmeal, instant, 1 packet 36 
Kidney beans, canned, ½ cup 35 
Banana, 1 medium 32 
Salmon, Atlantic, farmed, cooked, 3 ounces 26 
Milk, 1 cup 24–27 
Halibut, cooked, 3 ounces 24 
Raisins, ½ cup 23 
Bread, whole wheat, 1 slice 23 
Avocado, cubed, ½ cup 22 
Chicken breast, roasted, 3 ounces 22 
Beef, ground, 90% lean, pan broiled, 3 ounces 20 
Broccoli, chopped and cooked, ½ cup 12 
Rice, white, cooked, ½ cup 10 
Apple, 1 medium 
Carrot, raw, 1 medium 2” 

As mentioned in my earlier blog on magnesium: 

“Quick, go check your lab results. You’ll notice there’s no magnesium level. If you’d like your magnesium tested, you or your doctor need to order a specific test for that. Some labs will allow you to order your own magnesium test; others will require a doctor’s orders.” 

Until next week, 

Keep living your life! 

How Rare is This?

I have been hearing about so many different kinds of kidney disease that I’d forgotten which I’d written about. UMOD nephropathy is one that has kept coming up this past week or so. That got me to thinking… yep, I did write about it once before. It seems I had trouble getting any information at that time. Let’s try again. 

To start, here is some of the information about the disease that I included in SlowItDownCKD 2019. 

This is what the U.S. National Library of Medicine at bit.ly/3sykq5O had to say: 

‘Many individuals with uromodulin-associated kidney disease develop high blood levels of a waste product called uric acid. Normally, the kidneys remove uric acid from the blood and transfer it to urine. In this condition, the kidneys are unable to remove uric acid from the blood effectively. A buildup of uric acid can cause gout, which is a form of arthritis resulting from uric acid crystals in the joints. The signs and symptoms of gout may appear as early as a person’s teens in uromodulin-associated kidney disease. 

Uromodulin-associated kidney disease causes slowly progressive kidney disease, with the signs and symptoms usually beginning during the teenage years. The kidneys become less able to filter fluids and waste products from the body as this condition progresses, resulting in kidney failure. Individuals with uromodulin-associated kidney disease typically require either dialysis to remove wastes from the blood or a kidney transplant between the ages of 30 and 70. Occasionally, affected individuals are found to have small kidneys or kidney cysts (medullary cysts).’” 

By the way, the U.S. National Library of Medicine is part of the National Institutes of Health. 

I suspected I could find more information since almost two years have passed and I did. The Genetic and Rare Diseases Information Center (GARD), which is part of the National Center for Advancing Translational Sciences which, in turn, is part of the National Institutes of Health (just as the U.S. National Library of Medicine is) at Bit.ly/35KOalW offered the following:   

Autosomal dominant tubulointerstitial kidney disease due to UMOD mutations (ADTKD–UMOD) is an inherited disorder that causes a gradual loss of kidney function that eventually leads to the need for kidney transplantation or dialysis between the ages of 30 and 70. Patients with ADTKD-UMOD have high blood levels of uric acid before kidney failure develops, and some affected individuals may develop gout. Gout is a form of arthritis (inflammation) that occurs often in the big toe, ankle, knee, or other joints…. ADTKD-UMOD is caused by a mistake (mutation) in the UMOD gene, which leads to the build-up of the altered uromodulin protein in the tubules [Gail here: These are small tubes in your kidneys.] the kidney, leading to slow loss of kidney function. ADTKD-UMOD is inherited in a dominant pattern in families. It is diagnosed based on the symptoms, laboratory testing, family history and genetic testing. Many of the symptoms of ADTKD-UMOD can be treated with medication. For patients whose kidney function worsens to end-stage kidney disease, kidney transplant and dialysis can be used. The long-term outlook for people with ADTKD-UMOD is good, though patients may require dialysis or kidney transplantation between the ages of 30 and 70….” 

I was having a bit of trouble with the different names of the disease, so I turned to the National Center for Biotechnology Information (NCBI) at https://www.ncbi.nlm.nih.gov/books/NBK1356/ for clarification: 

“Autosomal dominant tubulointerstitial kidney disease caused by UMOD pathogenic variants (ADTKD-UMOD) was previously known as familial juvenile hyperuricemic nephropathy type 1 (FJHN1), medullary cystic kidney disease type 2 (MCKD2), and UMOD-associated kidney disease (or uromodulin-associated kidney disease)” 

The NCBI is ultimately also part of (surprise!) the National Institutes of Health. 

Well, that helped but you may also need this definition found in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary: 

Nephropathy: Kidney disease.” 

Hmmm, come to think of it, we could use a few more definitions. Thank you to Medline Plus for the definitions: 

Uremic acid: Uric acid is a chemical created when the body breaks down substances called purines. Purines are normally produced in the body and are also found in some foods and drinks. Foods with high content of purines include liver, anchovies, mackerel, dried beans and peas, and beer. 

UMOD gene: The UMOD gene provides instructions for making a protein called uromodulin. This protein is produced by the kidneys and then excreted from the body in urine. The function of uromodulin remains unclear, although it is known to be the most abundant protein in the urine of healthy individuals. Researchers have suggested that uromodulin may protect against urinary tract infections. It may also help control the amount of water in urine. 

This is quite a bit of information, but we still need the symptoms? According to Wake Forest Baptist Health at bit.ly/3oRN7s8

“There are three common features of this disease: 

Patients develop chronic kidney failure with loss of kidney function beginning in the teenage years and progressing to the need for dialysis or kidney transplantation at an age between 30 and 70 years. Patients have few or no symptoms of kidney disease when they are diagnosed. 

Usually, affected individuals are found to have some loss of kidney function when they undergo blood testing by their doctor as part of a general health screening. A blood test called the serum creatinine level is performed. If the blood creatinine level is above 1, this is usually abnormal and means the kidney is not removing the creatinine from the blood well enough. …. Frequently the doctor does not know why the serum creatinine level is high. Even if a kidney biopsy (the removal of a small piece of kidney tissue) is performed, a correct diagnosis is frequently not made. 

The patient has gout or some member of the family has a history of gout …. Affected individuals have high blood uric acid levels, and this leads to gout. Every affected individual in the family may not have gout, but there are usually at least one or two people in the family who have gout. Gout frequently involves the big toe, the foot, or the knee. The big toe will become extremely tender, and even placing a sheet on the toe will cause pain. In this condition, gout occurs in the late teenage years in both men and women. (In contrast, gout developing in the normal adult population tends to occur in overweight men in their 30’s to 50’s). Family members may develop bumps on their joints called tophi that are deposits of uric acid. 

The disease is likely to be inherited. If a person has the disease, their children have a 1 out of 2 (50%) chance of having the disease. The disease does not skip a generation, though a parent may be less severely affected than their child, and may not have gout or other signs of kidney disease for some time. Therefore, there is usually a strong family history of the condition.” 

Unfortunately, there is no cure for this rare disease – there are medications available to treat the symptoms. Only 400 people worldwide suffer from UMOD Nephropathy. 

Until next week, 

Keep living your life! 

It Won’t Necessarily Get You High

About a million years ago, really in the 60s, I attended Hunter College of the City University of New York. Since it was located on Lexington Avenue and 68th Street, we had no campus. What we did have was a high raise building with what seemed to be to be huge elevators. They always smelled so sweet despite the number of bodies crammed in during the change of classes. Being an innocent, I couldn’t figure out why. 

One of my brothers was in the Air Force. When he came home on leave, I told him about this. He laughed. Being more worldly, he explained to me about cannabis. I wasn’t sure I believed him; that’s how innocent I was. Ah, but I realized I had noticed the same odor at parties I’d been invited to. 

Years later, a reader was offered medical marijuana and wanted to know if it would make him high. It wouldn’t. He chose to do without it then. 

When I had cancer, I was offered medical marijuana to replace the opioids I took after surgery. By this time, five decades after my college experience (or lack thereof), I was more than willing. Except… my oncologist explained that it would exacerbate the constipation I was enduring from the drugs I was already taking. I was already uncomfortable enough, so I decided against it. 

So, what is this cannabis of which I write? Surprise! Instead of my favorite dictionary, we’ll be using the Oxford Languages since it is more specific: 

“a tall plant with a stiff upright stem, divided serrated leaves, and glandular hairs. It is used to produce hemp fiber and as a drug. 

a dried preparation of the flowering tops or other parts of the cannabis plant, or a resinous extract of it ( cannabis resin), smoked or consumed, generally illegally, as a psychoactive (mind-altering) drug.” 

Hmmm, however does this make us high?  According to LiveScience at https://www.livescience.com/how-cannabis-high-works.html,  

“‘When a person smokes or inhales cannabis, THC [Gail here: THC is tetrahydrocannabinol, the part of cannabis that gives you a high.] ‘goes into your lungs and gets absorbed … into the blood,’ according to Daniele Piomelli, a professor of anatomy & neurobiology, biological chemistry, and pharmacology at the University of California, Irvine School of Medicine. Edibles take [sic] slightly longer trip through the liver, where enzymes transform THC into a different compound that takes a bit longer to have an effect on people’s perception of reality.”   

Wait a minute… the liver? I’m dealing with kidneys here. 

As reported on Healio at http://bit.ly/39j7WpD , Lisa Miller Hedin, BSN, RN, mentioned the following during her speech at the American Nephrology Nurses Association National Symposium last September. By the way, “Miller Hedin, the founder and CEO of the Medical Cannabis Training Academy, has been involved for 25 years in nephrology nursing and has spent the last 5 years researching cannabis treatment options.” 

“Cannabis is mostly eliminated by the liver and excreted into stool, Miller Hedin said. ‘Very little is eliminated by kidneys or dialysis.’ Cannabis is lipid soluble and can stay in a patient’s system for 80 days, she said.” 

Well, if a bit of it “is eliminated by kidneys or dialysis,” why are Chronic Kidney Disease patients using it at all? 

The nephrologist’s guide to cannabis and cannabinoids by Rein, Joshua L. Division of Nephrology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA at http://bit.ly/39mfA2R gave me more insight.  

“Cannabis (marijuana, weed, pot, ganja, Mary Jane…) is the most commonly used federally illicit drug in the United States. As of December 2019, 33 states and the District of Columbia have medical cannabis programs. Eleven states and the District of Columbia have legalized recreational use. Several countries worldwide have legalized recreational use whereas many others have medical cannabis and decriminalization laws. The prevalence of cannabis use more than doubled between 2001 and 2013 in the United States… particularly among people over the age of 50 and even more so among those over 65 years …. These age groups are enriched with chronic illness including chronic kidney disease (CKD) that is associated with excess morbidity and mortality ….” 

Read that last line again. This time I did go to my favorite dictionary, the Merriam-Webster at https://www.merriam-webster.com/dictionary/morbidity for a specific definition – or definitions in this case – of morbidity, 

“1: the quality or state of being morbid especially: an attitude, quality, or state of mind marked by excessive gloom…  

2: a diseased state or symptom: ill health 

3: the incidence of disease: the rate of illness (as in a specified population or group) 
    also: the incidence of complications or undesirable side effects following surgery or medical                        treatment” 

I get it. We have pain. Cannabis can alleviate it without the use of opioids. But don’t necessarily expect to get high.     

Dr. Peter Grinspoon tells us via Harvard Medical School’s Harvard Health Publishing at  https://www.health.harvard.edu/blog/medical-marijuana-2018011513085,   

“Least controversial is the extract from the hemp plant known as CBD (which stands for cannabidiol) because this component of marijuana has little, if any, intoxicating properties. Marijuana itself has more than 100 active components. THC (which stands for tetrahydrocannabinol) is the chemical that causes the ‘high’ that goes along with marijuana consumption. CBD-dominant strains have little or no THC, so patients report very little if any alteration in consciousness.” 

Healthline (Remember them?) at https://www.healthline.com/health/does-cbd-get-you-high#thc seems to have the definitive word on this: 

“CBD can have several positive effects. Some of these research-backed uses of CBD even suggest it may help you feel relaxed. That can feel a bit like a high, though it’s not intoxicating…. 

Research suggests CBD is beneficial for relieving symptoms of anxiety and depression. It might also ease inflammation and pain….  

The World Health Organization says CBD is safe. However, more research is still needed to understand the full spectrum of effects and possible uses. 

Despite general acceptance, some people may experience some side effects when they take CBD, especially at high concentrations. These side effects can include: 

diarrhea 

mild nausea 

dizziness 

excessive fatigue 

dry mouth 

If you take any prescription medications, talk with your doctor before using CBD. Some medicines may be less beneficial because of CBD. They could also interact and cause unintended side effects.” 

Reminder – cannabis is not legal in all states. 

Until next week, 

Keep living your life! 

A New Year, New Kidney Disease Information

Happy New Year! Or, at least, that’s what I’m hoping for. I fervently believe the more you know, the better you can handle whatever’s happening in your world. That’s why, today, I’m exploring yet another term pertaining to kidney disease that I hadn’t been aware of. Oh my, how many, many types of kidney disease am I (and possibly you) unaware of?  

This one is membranous glomerulonephritis. I sort of-maybe-suspected what it might be, but I wanted to know for sure so I turned to Healthline – who bestowed a couple of awards on this blog a few years ago – at https://www.healthline.com/health/membranous-nephropathy for something more in the way of a definition. 

“Your kidneys are made up of a number of different structures that aid in the removal of wastes from your blood and the formation of urine. Glomerulonephritis (GN) is a condition in which changes in the structures of your kidney can cause swelling and inflammation. 

Membranous glomerulonephritis (MGN) is a specific type of GN. MGN develops when inflammation of your kidney structures causes problems with the functioning of your kidney. MGN is known by other names, including extramembranous glomerulonephritis, membranous nephropathy, and nephritis.” 

It’s hard to know where to start in exploring this disease. Let’s take the easy way and start with a definition of nephritis from… ta da, you guessed it – my all-time favorite dictionary, the Merriam Webster at https://www.merriam-webster.com/dictionary/nephritis.  

“acute or chronic inflammation of the kidney caused by infection, degenerative process, or vascular disease” 

I’m going back to the beginning of my blog journey to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definitions. 

“Acute: Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic. 

 Chronic: Long term; the opposite of acute.” 

By the way, you can click on the title of the book if you’re interested in purchasing it from Amazon. 

So, basically, nephritis means a kidney problem. But membranous glomerulonephritis is something more specific in that it is a kind of GN or glomerulonephritis. Back to the dictionary for the definition of glomerulonephritis: 

“acute or chronic nephritis that involves inflammation of the capillaries of the renal glomeruli, has various causes (such as streptococcal infection, lupus, or vasculitis) or may be of unknown cause, and is marked especially by blood or protein in the urine and by edema, and if untreated may lead to kidney failure” 

Ah, so now we know what part of the kidneys are involved. Do you remember what the glomeruli are? Just in case you don’t, here’s how ‘s Lexicon at https://www.lexico.com/en/definition/glomerulus  defines this plural noun: 

“a cluster of nerve endings, spores, or small blood vessels, in particular a cluster of capillaries around the end of a kidney tubule, where waste products are filtered from the blood.” 

Now we’re getting somewhere. Let’s keep digging. Membranous glomerulonephritis is a specific GN. I went directly to MedlinePlus, which is part of the National Institutes of Health, which in turn is part of The U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000472.htm

“Membranous nephropathy is caused by the thickening of a part of the glomerular basement membrane. The glomerular basement membrane is a part of the kidneys that helps filter waste and extra fluid from the blood. The exact reason for this thickening is not known. 

The thickened glomerular membrane does not work normally. As a result, large amounts of protein are lost in the urine. 

This condition is one of the most common causes of nephrotic syndrome. This is a group of symptoms that include protein in the urine, low blood protein level, high cholesterol levels, high triglyceride levels, and swelling. Membranous nephropathy may be a primary kidney disease, or it may be associated with other conditions. 

The following increase your risk for this condition: 

Cancers, especially lung and colon cancer 

Exposure to toxins, including gold and mercury 

Infections, including hepatitis B, malaria, syphilis, and endocarditis 

Medicines, including penicillamine, trimethadione, and skin-lightening creams 

Systemic lupus erythematosus, rheumatoid arthritis, Graves disease, and other autoimmune disorders 

The disorder occurs at any age, but is more common after age 40.” 

Being only a bit more than a year out from cancer, I was getting nervous so I went to the National Kidney Foundation at https://www.kidney.org/atoz/content/membranous-nephropathy-mn for a list of symptoms. 

“Swelling in body parts like your legs, ankles and around your eyes (called edema) 

Weight gain 

Fatigue 

Foaming of the urine caused by high protein levels in the urine (called proteinuria) 

High fat levels in the blood (high cholesterol) 

Low levels of protein in the blood” 

These symptoms struck me as so common that I wanted to know just how usual membranous glomerulonephritis was. After checking numerous sites, the consensus I found was that this is not a common disease. Thank goodness! 

Even though it’s not common, we still might want to know what to do if we were diagnosed with membranous glomerulonephritis, especially since I discovered that this may be considered an autoimmune disease. This is how the Mayo Clinic suggested the disease be treated: 

“Treatment of membranous nephropathy [Gail here: That’s a synonym for membranous glomerulonephritis.] focuses on addressing the cause of your disease and relieving your symptoms. There is no certain cure. 

However, up to three out of 10 people with membranous nephropathy have their symptoms completely disappear (remission) after five years without any treatment. About 25 to 40 percent have a partial remission. 

In cases where membranous nephropathy is caused by a medication or another disease — such as cancer — stopping the medication or controlling the other disease usually improves the condition.” 

There is much more detailed treatment information on their website at mayoclinic.in/354QFPU.    

That is a bit more reassuring. Thank you to all the readers who use terms I hadn’t heard of before and/or ask questions about topics that are new to me. May this year be kinder to us than the last one. 

Until next week, 

Keep living your life! 

Learning Every Day

 Chronic Kidney Disease is all over my world. You know when you have your ears open for a certain term, you seem to hear it all the time? That’s what my life has been like for the last dozen years. When I noticed a comment in a Facebook kidney disease support group about Action myoclonus–renal failure (AMRF) syndrome, I was stunned. Here was yet another possible kidney disease I’d never heard of. 

As defined by MedlinePlus, a division of the National Health Institutes (which is a division of the U.S. National Library of Medicine) at http://bit.ly/2KY6EI8,  

“Action myoclonus–renal failure (AMRF) syndrome causes episodes of involuntary muscle jerking or twitching (myoclonus) and, often, kidney (renal) disease. Although the condition name refers to kidney disease, not everyone with the condition has problems with kidney function.” 

I was intrigued and wanted to know more. So, I did what I usually do when that happens. I poked around everywhere I could think of on the internet. My first hit was on The National Center for Biotechnology Information (NCBI), which is part of The U.S. National Library of Medicine at https://www.ncbi.nlm.nih.gov/books/NBK333437/

“Action myoclonus – renal failure (AMRF) syndrome typically comprises a continuum of two major (and ultimately fatal) manifestations: progressive myoclonic epilepsy (PME) and renal failure; however, in some instances, the kidneys are not involved. Neurologic manifestations can appear before, simultaneously, or after the renal manifestations. Disease manifestations are usually evident in the late teens or early twenties. In the rare instances in which renal manifestations precede neurologic findings, onset is usually in late childhood / early adolescence but can range to the fifth or sixth decade.” 

Uh-oh, epilepsy. One of my children has that. Luckily for her, she doesn’t have CKD. But we still need more information… or, at least, I do. For instance, how does the illness progress? 

Rare Disease InfoHub at http://bit.ly/37Qgo0h answered this particular question. 

“The movement problems associated with AMRF syndrome typically begin with involuntary rhythmic shaking (tremor) in the fingers and hands that occurs at rest and is most noticeable when trying to make small movements, such as writing. Over time, tremors can affect other parts of the body, such as the head, torso, legs, and tongue. Eventually, the tremors worsen to become myoclonic jerks, which can be triggered by voluntary movements or the intention to move (action myoclonus). These myoclonic jerks typically occur in the torso; upper and lower limbs; and face, particularly the muscles around the mouth and the eyelids. Anxiety, excitement, stress, or extreme tiredness (fatigue) can worsen the myoclonus. Some affected individuals develop seizures, a loss of sensation and weakness in the limbs (peripheral neuropathy), or hearing loss caused by abnormalities in the inner ear (sensorineural hearing loss). Severe seizures or myoclonus can be life-threatening.” 

But we haven’t looked at the kidneys yet. How are they involved in those who develop kidney problems from this rare disease? Let’s go back to MedlinePlus to see what we can find. Don’t be surprised that the answer is fairly general: 

“When kidney problems occur, an early sign is excess protein in the urine (proteinuria). Kidney function worsens over time, until the kidneys are no longer able to filter fluids and waste products from the body effectively (end-stage renal disease).” 

Do you remember what proteinuria is? Here’s a reminder from my first CKD book – What Is It and How Did I Get It? Early Stage Chronic Kidney Disease – in case you’ve forgotten: 

“Protein in the urine, not a normal state of being” 

Hmmm, proteinuria is exactly what it sounds like. That got me to thinking: How does the protein get into the urine in the first place? 

“Protein gets into the urine if the kidneys aren’t working properly. Normally, glomeruli, which are tiny loops of capillaries (blood vessels) in the kidneys, filter waste products and excess water from the blood. 

Glomeruli pass these substances, but not larger proteins and blood cells, into the urine. If smaller proteins sneak through the glomeruli, tubules (long, thin, hollow tubes in the kidneys) recapture those proteins and keep them in the body. 

However, if the glomeruli or tubules are damaged, if there is a problem with the reabsorption process of the proteins, or if there is an excessive protein load, the proteins will flow into the urine.” 

Thank you to a trusted site, The Cleveland Clinic at http://cle.clinic/3nTjLZI for helping us out here.

The important point here is that proteinuria, or albumin as it is often called, prevents the substances that belong in your blood stream from fully remaining there to help you: 

“Blood contains two main kinds of proteins: albumin and globulins. Blood proteins help your body produce substances it needs to function. These substances include hormones, enzymes and antibodies. 

Usually, the amount of total protein in your blood is relatively stable.” 

I’d gone back to the reliable Cleveland Clinic for this information. 

I don’t know about you as you read today’s blog, but I found writing it exhausting. Of course, that may be due to the fact that Christmas Eve and Christmas Day have just passed. I’m not quite as vigilant as I usually am about the renal diet during certain celebrations. Considering that Bear’s Lutheran and I’m Jewish, that was a lot of celebrating. I see my exhaustion as an endorsement to get right back on the kidney diet. 

Here’s hoping your Chanukah, Christmas, Boxing Day, and Kwanza were as happy as you’d hoped under the restrictions of small group gatherings, six foot distancing, and mask wearing. We stayed home alone using the phone and Facetime to be with family.  

It was… different. But more importantly, it was safe. Keep in mind that you’re already immuno-compromised simply by having CKD. If you no longer have a spleen like me (Thanks, pancreatic cancer.), you’re even more immunocompromised. Hugs are the best, but they could be deadly for us. Stay safe. 

Until next week, 

Keep living your life! 

Baby, It’s Cold Outside. I Mean Inside.

As a diabetic, I have my feet checked and my toenails cut every nine weeks. When I was at my podiatrist’s recently, we both made mention of my slightly blue skin at the same time. I thought it was just thin skin showing the veins underneath. That’s when she mentioned a syndrome I’d heard of many times, but had never explored: Raynaud’s Syndrome, named after the Frenchman who discovered it. 

Hmmm, I wondered. Could this be related to Chronic Kidney Disease? So, of course, I looked for answers to my questions. Let’s get the basics down first… like what is it? 

Circulation Foundation at http://bit.ly/37yxSy4 answers that question.  

“Raynaud’s is a common condition where the blood supply to the extremities is interrupted or reduced. This usually affects the fingers and toes, but occasionally the nose or ears. 

Attacks are usually provoked by cold or a sudden change in temperature. During an attack the affected body part first becomes white, then turns blue as the tissues use up the oxygen and finally bright red as the arteries relax and fresh blood rushes in. 

Raynaud’s can vary in form, from very mild to severe cases – which can require treatment. 

Anyone of any age can suffer from Raynaud’s, but younger women are affected more commonly. It seems to be a change in temperature, rather than just exposure to cold that precipitates an attack, so although worse in winter, it can occur in summer too. 

Stress or anxiety can also provoke a Raynaud’s attack. Some cases of Raynaud’s are associated with some other diseases (called secondary Raynaud’s).” 

Uh, secondary Raynaud’s? What’s that? Back to the drawing board or, in this case, the researching mode. Let’s try WebMD. Bingo! 

“Secondary Raynaud’s (Raynaud’s syndrome, Raynaud’s phenomenon) happens as a result of another illness. It’s often a condition that attacks your body’s connective tissues, like lupus or rheumatoid arthritis. It’s less common, but it’s more likely to cause serious health problems. This can include things like skin sores and gangrene. These happen when cells and tissue in your extremities die from lack of blood.” 

Then, according to WebMD at http://wb.md/3h3fznI, IF I have Raynaud’s, it’s probably secondary Raynaud’s. But what about the terms Raynaud’s syndrome and Raynaud’s phenomenon in the quote above? Are they interchangeable? 

Hello, my favorite dictionary. The Merriam-Webster Medical Dictionary at http://wb.md/3h3fznI tells us that Raynaud’s phenomenon is the same as Raynaud’s syndrome: 

“the symptoms associated with Raynaud’s disease 

— called also Raynaud’s syndrome” 

Of course, that brings up another question. Symptoms are mentioned in the definition. What are the symptoms of Secondary Raynaud’s? I’ll bet the Mayo Clinic at http://mayocl.in/3pn9fur can help us out here. 

“Cold fingers or toes 

Color changes in your skin in response to cold or stress 

Numb, prickly feeling or stinging pain upon warming or stress relief 

During an attack of Raynaud’s, affected areas of your skin usually first turn white. Then, they often turn blue and feel cold and numb. As you warm and your circulation improves, the affected areas may turn red, throb, tingle or swell. 

Although Raynaud’s most commonly affects your fingers and toes, it can also affect other areas of your body, such as your nose, lips, ears and even nipples. After you warm up, the return of normal blood flow to the area can take 15 minutes.” 

I should mention here that severe cases of Secondary Raynaud’s are rare. Also, I can honestly say that I have each of these symptoms at times. As far as the cold, I figured it was just anemia. Wrong. 

We know what Secondary Raynaud’s is, what the symptoms are, and that it need not be serious, but how do you treat it? 

Wait, wait, wait. I just found this from the Merck Manual, Consumer Edition at http://bit.ly/38oZwwr

“Raynaud syndrome, a functional peripheral arterial disease, is a condition in which small arteries (arterioles), usually in the fingers or toes, narrow (constrict) more tightly than normal in response to exposure to cold.” 

It’s a PAD? Oh, excuse me, that means “peripheral arterial disease,” as mentioned above. Let’s get a definition. Back to the Merriam Webster Medical Dictionary. This time at http://bit.ly/37CdR9P:  

“damage to or dysfunction of the arteries outside the heart resulting in reduced blood flow” 

Hmmm, the podiatrist did mention spasms in the arteries at the extreme ends of my body, meaning my fingers and toes. This is all starting to make sense now. 

But we were going to see what we could find out about treatment before I made the PAD discovery. Let’s go back to that.  MedicalNewsToday at https://www.medicalnewstoday.com/articles/176713 had quite a bit of information: 

“There is no cure for Raynaud’s disease, but there are ways to manage symptoms. 

For mild forms of Raynaud’s disease, covering exposed skin before leaving the house can help. If an attack occurs, soaking the affected parts in warm, not hot, water can alleviate symptoms and prevent them from worsening. 

If stress is a factor, learning to manage stress can help. 

For moderate to severe cases, medication may be necessary. 

Alpha-1 blockers can counter the effect of norepinephrine, which constricts blood vessels. Examples include doxazosin and prazosin. 

Dihydropyridine calcium channel blockers relax the smaller blood vessels of the hands and feet. Examples include amlodipine, nifedipine, and felodipine. 

Topical nitroglycerin ointment applied to the affected area appears to relieve the symptoms by improving blood flow and cardiac output and decreasing blood pressure. 

Other vasodilators dilate the veins, easing symptoms. Examples include losartan, sildenafil (Viagra), fluoxetine (Prozac), and prostaglandin.” 

They also talk about surgery and/or chemical injections for severe cases. 

The funny thing is I live in Arizona. We have winter… sort of, but nothing drastic like snow and ice. I also take losartan for high blood pressure and to protect my kidneys. As for stress, that is present now with me just recovered from the double hernia surgery, my bother in a health care facility for Parkinson’s dementia, my husband’s Alzheimer’s and someone extremely close to my children in ICU with Covid-19 and other illnesses. (Reading this, I wonder why I’m not depressed!) 

Until next week, 

Keep living your life! 

D&C Now has Another Meaning

We usually think of a D&C as a women’s issue:  

“Dilation and curettage (D&C) is a procedure to remove tissue from inside your uterus. Doctors perform dilation and curettage to diagnose and treat certain uterine conditions — such as heavy bleeding — or to clear the uterine lining after a miscarriage or abortion.” 

Thank you to MayoClinic at https://mayocl.in/3oOzkC2 for the above explanation. 

But that’s not what I’ll be writing about today. The ‘D’ in the title stands for Dialysis and the ‘C‘ for Covid-19. Yes, Covid-19 has struck close to home for us. Someone my grown children are very close to has tested positive. He also started dialysis so recently that he hasn’t yet accepted that this is what is keeping him alive. 

Let’s get some definitions out of the way first. Take it away, Merriam-Webster Dictionary

Dialysis:  1. the separation of substances in solution by means of their unequal diffusion through semipermeable membranes 

                 2. the process of removing blood from an artery (as of a patient affected with kidney failure), purifying it by dialysis, adding vital substances, and returning it to a vein 

Covid-19: a mild to severe respiratory illness that is caused by a coronavirus (Severe acute respiratory syndrome coronavirus 2 of the genus Betacoronavirus), is transmitted chiefly by contact with infectious material (such as respiratory droplets) or with objects or surfaces contaminated by the causative virus, and is characterized especially by fever, cough, and shortness of breath and may progress to pneumonia and respiratory failure 

NOTE: While fever, cough, and shortness of breath are common symptoms of COVID-19, other symptoms may include fatigue, chills, body aches, headache, loss of taste or smell, sore throat, runny nose, nausea, vomiting, or diarrhea. 

 Here are an additional couple of definitions you may need. They’re from the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. 

Arteries: Vessels that carry blood from the heart. 

Veins: Vessels that carry blood toward the heart. 

Now what? Let’s see if we can find out how Covid-19 affects dialysis patients. The Clinical Journal of the American Society of Nephrology (CJASN) at https://cjasn.asnjournals.org/content/15/8/1087 reports the following in an August study: 

“The patients with kidney disease who appear most at risk for COVID-19 are those with a kidney transplant, due to immunosuppression, and those who undergo in-center hemodialysis treatments thrice weekly, due to inability to self-isolate. Patients with kidney disease also have other comorbidities, including hypertension, diabetes mellitus, and cardiovascular disease, that are risk factors for poor outcomes in COVID-19.” 

On December 1 of this year, the Centers for Disease Control and Prevention (CDC) cautioned those of us with chronic kidney disease, including those on dialysis: 

“Having chronic kidney disease of any stage increases your risk for severe illness from COVID-19. 

Actions to take 

Continue your medicines and your diet as directed by your healthcare provider. 

Make sure that you have at least a 30-day supply of your medicines. 

Stay in contact with your healthcare team as often as possible, especially if you have any new signs or symptoms of illness. Also reach out to them if you can’t get the medicines or foods you need. 

If you don’t have a healthcare provider, contact your nearest community health or health department. 

Have shelf-stable food choices to help you follow your kidney diet. 

If you are on dialysis: 

Contact your dialysis clinic and your healthcare provider if you feel sick or have concerns. 

Do NOT miss your treatments. 

Plan to have enough food on hand to follow the KCER 3-Day Emergency Diet for dialysis patients in case you are unable to maintain your normal treatment schedule. 

Learn more about kidney disease. 

Learn how to take care of your kidneys.” 

The KCER 3-Day Emergency Diet is not that intricate, but it is a long explanation. Click on the link to go right to the diet itself. 

We know the best way to deal with Covid-19 is prevention. I’m sure you’re tired of hearing it, but here are the ways you can hopefully do just that. This information was posted on the World Health Organization’s (WHO) website at bit.ly/3nfeMCB on December 8th of this year. 

“Maintain at least a 1-metre [Gail here: that’s 3.28 ft, so I’d be more comfortable with 2-metres.] distance between yourself and others to reduce your risk of infection when they cough, sneeze or speak. Maintain an even greater distance between yourself and others when indoors. The further away, the better. 

Make wearing a mask a normal part of being around other people. The appropriate use, storage and cleaning or disposal are essential to make masks as effective as possible. 

Here are the basics of how to wear a mask: 

Clean your hands before you put your mask on, as well as before and after you take it off, and after you touch it at any time. 

Make sure it covers both your nose, mouth and chin. 

When you take off a mask, store it in a clean plastic bag, and every day either wash it if it’s a fabric mask, or dispose of a medical mask in a trash bin. 

Don’t use masks with valves….  

How to make your environment safer 

Avoid the 3Cs: spaces that are closed, crowded or involve close contact. 

Outbreaks have been reported in restaurants, choir practices, fitness classes, nightclubs, offices and places of worship where people have gathered, often in crowded indoor settings where they talk loudly, shout, breathe heavily or sing. 

The risks of getting COVID-19 are higher in crowded and inadequately ventilated spaces where infected people spend long periods of time together in close proximity. These environments are where the virus appears to spreads by respiratory droplets or aerosols more efficiently, so taking precautions is even more important. 

Meet people outside. Outdoor gatherings are safer than indoor ones, particularly if indoor spaces are small and without outdoor air coming in…. 

Avoid crowded or indoor settings but if you can’t, then take precautions: 

Open a window. Increase the amount of ‘natural ventilation’ when indoors…. 

Wear a mask (see above for more details).  

Don’t forget the basics of good hygiene 

Regularly and thoroughly clean your hands with an alcohol-based hand rub or wash them with soap and water. This eliminates germs including viruses that may be on your hands. 

Avoid touching your eyes, nose and mouth. Hands touch many surfaces and can pick up viruses. Once contaminated, hands can transfer the virus to your eyes, nose or mouth. From there, the virus can enter your body and infect you. 

Cover your mouth and nose with your bent elbow or tissue when you cough or sneeze. Then dispose of the used tissue immediately into a closed bin and wash your hands. By following good ‘respiratory hygiene’, you protect the people around you from viruses, which cause colds, flu and COVID-19. 

Clean and disinfect surfaces frequently especially those which are regularly touched, such as door handles, faucets and phone screens.” 

This is a long, but necessary, blog. Just a bit more now. 

I’d wondered why dialysis patients are so much more at risk of Covid-19 and was surprised at how simple and common sense the reasons are. These are gathered from multiple sites that agree that shared rides, the inability to quarantine (since hemodialysis patients usually need to go to a dialysis center), and closer than six feet distancing at the centers (if that’s the case) all contribute to the susceptibility of dialysis patients to Covid-19. 

Please be safe. 

Until next week, 

Keep living your life! 

To Dye or Not

Last week, I underwent a three-month scan for cancer. I am still cancer free, so let’s get that out of the way. I’m so cancer free that I started thinking about those with kidney cancer who have scans. That’s when I started asking questions about this procedure that I’ve already undergone what seems like a million times. My questions, while answered by the technicians, of course led me to other questions. Here are the answers. 

Let’s start at the beginning. Do we use CT or CAT Scan when referring to this kind of test? According to Cincinnati Children’s Hospital Medical Center’s Blog at https://bit.ly/3lKrkjP:  

“… CAT and CT scans both mean the same type of diagnostic examination. CAT was used earlier in its history, while CT is the recent up-to-date term for convenience sake. The term CT stands for computed tomography and the term CAT stands for computed axial tomography or computerized axial tomography scan.” 

Huh? I get ‘computed,’ but what’s ‘tomography’? On to my favorite dictionary of all time. You guessed it; The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/tomography tells us, it’s: 

“a method of producing a three-dimensional image of the internal structures of a solid object (such as the human body or the earth) by the observation and recording of the differences in the effects on the passage of waves of energy impinging on those structures” 

Ah, that makes sense. Now what about this iodine dye that we, as Chronic Kidney Disease patients, are not supposed to have? I went to Inside Radiology at https://www.insideradiology.com.au/iodine-containing-contrast-medium/ for information. 

“Iodine-containing contrast medium (ICCM), sometimes called contrast or contrast medium, is a chemical substance used in medical X-ray imaging [Gail here: CT is a sort of X-ray.]. When injected into the body, ICCM shows what is happening inside the hollow parts of the body (like blood vessels, the stomach, bowel or even the fluid around the spinal cord) on X-ray images or pictures. When injected into a blood vessel, which can be either an artery or a vein, it not only shows the inside of the blood vessel, but it can give information about how the organs supplied by that blood vessel are working. Good examples of this are the kidneys, brain and lungs.” 

I still have my port from chemotherapy, so that was used to inject the iodine dye. Reminder, 

“A chemo port is a small, implantable reservoir with a thin silicone tube that attaches to a vein. The main advantage of this vein-access device is that chemotherapy medications can be delivered directly into the port rather than a vein, eliminating the need for needle sticks.” 

Thank you, Moffit Cancer Center, at https://moffitt.org/treatments/chemotherapy/what-is-a-chemo-port/ for this information. It’s pretty clear ports can also be used for the dye, blood draws, and infusions of any kind. For example, I’m receiving iron infusion once a week via my port. 

I know the big question here is why am I having contrast dye when it’s not recommended for CKD patients. Let’s take a closer look at that warning.

“’The historical fears of kidney injury from contrast-enhanced CT have led to unmeasured harms related to diagnostic error and diagnostic,’ explained lead author Matthew S. Davenport, MD, associate professor of radiology and urology at the University of Michigan in Ann Arbor, Michigan. ‘Modern data clarify that this perceived risk has been overstated….’” 

The above statement is from U.S. Pharmacist at https://www.uspharmacist.com/article/risk-of-contrast-media-in-reduced-kidney-function-patients-overstated

I’m comfortable with iodine contrast. First, it was clear that cancer took precedence over my kidney health, but now I’m not worried about it because of the overstatements. 

After the CT, saline was infused into my port. Wolf Medical Supply at https://bit.ly/3gjx8Q6 did a great job of explaining what this is and how it’s preformed in layman’s terms: 

“A saline flush is used to help prevent IV catheters from becoming blocked and to help remove any medication that may be left at the catheter site. 

A saline flush is a sterile mix of salt and water that is compatible with your body’s fluids and tissues. Typically, the healthcare provider will fill a syringe using a bottle of normal saline solution or use a prefilled flush syringe that’s been prepared under sterile conditions. 

To flush the IV, first, clean the IV port or hub, then connect an IV saline flush syringe to the port, slowly pull back on the syringe plunger, inject the saline solution into the IV line, and then start the medication drip. Before beginning another infusion, your provider will flush the line again.” 

We’re not done yet, though. Next came a heparin flush. Does the word ‘heparin’ sound familiar?  According to Drugs.com at https://bit.ly/3qvmGcW,   

“Heparin is an anticoagulant (blood thinner) that prevents the formation of blood clots. Heparin is used to treat and prevent blood clots caused by certain medical conditions or medical procedures. It is also used before surgery to reduce the risk of blood clots.” 

I didn’t understand why I needed heparin after a CT. WebMD at https://bit.ly/3mUeCjK explained: 

“This medication is used to keep IV catheters open and flowing freely. Heparin helps to keep blood flowing smoothly and from clotting in the catheter by making a certain natural substance in your body (anti-clotting protein) work better….” 

While I understood the CT process now, and hope that you do, too, there are warnings in place. For example,  

“Patients with kidney failure or other kidney problems should notify their doctor. In some cases, the contrast media can cause kidney failure, especially in patients with underlying kidney problems or dehydration. Patients taking the diabetes medication metformin (Glucophage), or its derivatives, who receive contrast are at increased risk of developing a condition called metabolic acidosis, or an unsafe change in blood pH, and the drug may be halted for 48 hours after the procedure.” 

The above is also from WebMD, but this time at https://www.webmd.com/drugs/2/drug-60428/heparin-lock-intravenous/details.  

I take the warning to mean speak with your nephrologist first. Although, your case may be like mine was: cancer first, then kidneys, especially if it’s kidney cancer. But we always speak with our nephrologists first, don’t we?  

Until next week, 

Keep living your life!

They’re No Laughing Matter

I may have mentioned a time or two (or ten) that I was recently hospitalized again. This time it was for an abdominal incision hernia. Usually, this is outpatient surgery. However, the surgeon who made the original abdominal incision wanted to take no chances and arranged for me to stay in the hospital overnight. And that turned into five nights since he discovered another hernia under the one he’d expected to repair and then I kept running fevers. 

You probably know that you’re expected to start walking the day of (or the day after) surgery these days. It hastens your recovery. So, I walked the halls with the aid of a nurse and a walker, which fast became annoying although necessary (the walker, not the nurse). Apparently, I didn’t walk enough since for the time in her life, this 73 year developed bed sores.   

Photo by tegh 93 on Pexels.com

Bedsores? Certainly, that’s nothing to be ashamed of. Right? But there was that teeny little kernel of shame, as if I’d done something wrong and was being punished. Did it have to do with Chronic Kidney Disease? Why didn’t this happen during my other hospitalizations this last year? Of had I been just too out of it to realize I had bedsores during those hospitalizations?  

Come along with me as I figure this out. First of all, what are bedsores? The first thing I learned from my all-time favorite dictionary, The Merriam-Webster, at https://www.merriam-webster.com/dictionary/bedsores is that it’s one compound word, not two separate words as I’d always believed. Here’s their definition: 

“an ulceration of tissue deprived of adequate blood supply by prolonged pressure 

— called also decubitus ulcer” 

Wait a minute. What’s an ulcer? According to the same dictionary, but this time at https://www.merriam-webster.com/dictionary/ulcer

“a break in skin or mucous membrane with loss of surface tissue, disintegration and necrosis of epithelial tissue, and often pus” 

Okay, got it. Anyone know what “decubitus” means? I don’t. Back to the dictionary, guys. Well, will you look at that? The joke’s on us. That means “bedsore.” No kidding. Check it out for yourself at  https://www.merriam-webster.com/dictionary/decubitus.  

Now that we know what a bedsore is, let’s see if it has anything to do with CKD. Just keep in mind that diabetes is the foremost cause of CKD. This is from Beacon Health System at https://www.beaconhealthsystem.org/library/diseases-and-conditions/bedsores-pressure-ulcers/ , 

“Medical conditions affecting blood flow. Health problems that can affect blood flow, such as diabetes and vascular disease, can increase the risk of tissue damage such as bedsores.” 

Uh-oh, Type 2 diabetic here. 

Did you know there are stages of bedsores? I didn’t, but emedicine at  

https://emedicine.medscape.com/article/190115-overview educated me: 

” Stage 1 pressure injury – Nonblanchable erythema [Gail here: that means reddening.] of intact skin 

Stage 2 pressure injury – Partial-thickness skin loss with exposed dermis 

Stage 3 pressure injury – Full-thickness skin loss 

Stage 4 pressure injury – Full-thickness skin and tissue loss 

Unstageable pressure injury – Obscured full-thickness skin and tissue loss 

Deep pressure injury – Persistent nonblanchable deep red, maroon or purple discoloration” 

We know that dermis is skin, but “nonblanchable”? We can figure this out. If you remember your high school French, you know that ‘blanch’ means white. Add ‘non’ and we get ‘not white.’ That’s what nonblachable means; your skin does not turn white if you press on it.  

Wow! Lots of new information today. Okay, so how do you know if you have a bedsore? For me, it was the pain. I didn’t even have to look. 

The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/bed-sores/symptoms-causes/syc-20355893 tells us other symptoms: 

“Unusual changes in skin color or texture 

Swelling 

Pus-like draining 

An area of skin that feels cooler or warmer to the touch than other areas 

Tender areas” 

Come to think of it, the area in question was swollen, tender, and unusually warm. 

Now what? We know what bedsores are, what they have to do with CKD, that they are staged, and what the symptoms are. Ah, of course. What do you do once you have them? 

I was fortunate to come upon Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/conditions-and-diseases/bedsores for the answer to my question. 

  • “Removing pressure on the affected area 
  • Protecting the wound with medicated gauze or other special dressings 
  • Keeping the wound clean 
  • Ensuring good nutrition 
  • Removing the damaged, infected, or dead tissue (debridement) 
  • Transplanting healthy skin to the wound area (skin grafts) 
  • Negative pressure wound therapy 
  • Medicine (such as antibiotics to treat infections)” 

I’m thankful that removing the pressure on the affected area and a local antibiotic were all I needed. However, those were uncomfortable days for me and I’d like to avoid going through them again. 

Here’s what I should have been doing in the hospital according to Victoria State Government’s Better Health Channel (Canada),  

“Skin care in hospital 

During a stay in hospital, your skin may be affected by the hospital environment, staying in bed or sitting in one position for too long, whether you are eating and drinking enough and your physical condition. Ask hospital staff to regularly check your skin, particularly if you feel any pain. 

There are some things that you can do to look after your skin, including: 

Keep your skin clean and dry.  

Avoid any products that dry out your skin. This includes many soaps, body washes and talcum powder. Ask for skin cleansers that are non-drying. Ask nursing staff or your pharmacist to give you options. 

Use a water-based moisturiser daily. Be careful of bony areas and don’t rub or massage them. Ask staff for help if you need it. 

Check your skin every day or ask for help if you are concerned. Let a doctor or nurse know if there are any changes in your skin, especially redness, swelling or soreness. 

If you are at risk of pressure sores, a nurse will change your position often, including during the night. 

Always use any devices given to you to protect your skin from tearing and pressure sores. These may include protective mattresses, seat cushions, heel wedges and limb protectors.  

Drink plenty of water (unless the doctor has told you not to). 

Eat regular main meals and snacks. Sit out of bed to eat if you can. 

Try to maintain your regular toilet routine.  

If you have a wound, a plan will be developed with you and your family or carers before you leave hospital. It will tell you how to dress and care for the wound.”  

And here I’d been priding myself on sitting the chair from day one. I should have changing my position in that chair more often. 

Until next week, 

Keep living your life! 

Giving Credit Where Credit is Due

I’ve been feeling awfully thankful these past few weeks. Nothing like a health challenge or two to make you realize just how much you have to be grateful for. 

I’m not sure if you know it or not, but my husband – Paul Garwood, better known as Bear – has been my photographer for over a decade. Periodically I’ll think to mention it but, to be honest, haven’t mentioned that I am amazed by how he’s continued to do this (and do it well) despite his own health challenges. Thank you, Bear. 

But let’s not stop there. I’ve been highly active in the Chronic Kidney Disease Awareness Movement for over a decade. During that time, I’ve met others on the same path. The American Association of Kidney Patients has honored one of our own with a National Award and I’d like to honor him, too. 

“Organization Category: Urban Kidney Alliance, a Baltimore-based non-profit, focused on advocating, and empowering individuals in urban cities at-risk for chronic kidney disease (CKD) and other conditions. Award accepted by Founder, Steven Belcher, RN” 

Steve not only interviewed me on his show May 20th of this year, but guest blogged while I was laid up. Thank you, Steve. 

There are others, many in fact, that I’ve omitted. To you, I offer my apologies.   

My final gratitude for today’s blog goes to our kidneys. I’ve just learned that they produce glucose. Is that common knowledge? It was new to me and I wanted to know exactly how they do that. This is what sparked my interest: 

“…traditionally, the kidneys have not been considered an important source of glucose (except during acidosis or after prolonged fasting), with most clinical discussions on glucose dysregulation centering on the intestine, pancreas, liver, adipose tissue, and muscle…. More recently, however, the full significance of the kidneys’ contribution to glucose homeostasis, under both physiologic and pathologic conditions, has become well recognized, and is thought to involve functions well beyond glucose uptake and release. Besides the liver, the kidney is the only organ capable of generating sufficient glucose (gluconeogenesis) to release into the circulation, and it is also responsible for filtration and subsequent reabsorption or excretion of glucose…. These findings have provided considerable insight into the myriad of pathophysiologic mechanisms involved in the development of hyperglycemia and type 2 diabetes mellitus (T2DM) ….”  

The above is from AJMC at https://www.ajmc.com/view/ace005_12jan_triplitt_s11 and can probably use some explanation. First of all, AJMC is The American Journal of Managed Care and is actually for research outcomes. However, we find the information we need wherever we can. Let’s get to some of the explanations we may need. 

I started out by checking the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Diseasethe first book I wrote about CKD way back in 2010. 

Glucose: The main sugar found in the blood. In diabetes, the body doesn’t adequately control natural and ingested sugar.” 

That helps, but we need more definitions. Thank goodness for my all-time favorite dictionary,The Merriam-Webster Dictionary: 

“acidosis: an abnormal condition characterized by reduced alkalinity of the blood and of the body tissues 

adipose tissue: connective tissue in which fat is stored and which has the cells distended by droplets of fat 

homeostasis: a relatively stable state of equilibrium or a tendency toward such a state between the different but interdependent elements or groups of elements of an organism, population, or group 

hyperglycemia: excess of sugar in the blood 

pathologic(al): … altered or caused by disease; also, indicative of disease 

pathophysiology: the physiology of abnormal states, specifically the functional changes that accompany a particular syndrome or disease 

physiologic(al): … characteristic of or appropriate to an organism’s healthy or normal functioning 

type 2 diabetes mellitus: a common form of diabetes mellitus that develops especially in adults and most often in obese individuals and that is characterized by hyperglycemia resulting from impaired insulin utilization coupled with the body’s inability to compensate with increased insulin production — called also non-insulin-dependent diabetes, non-insulin-dependent diabetes mellitus, type 2 diabetes mellitus” 

Can you hear me laughing? I’m beginning to feel like I’m back in the classroom teaching a vocabulary lesson. 

Okay, so what happens if we apply all these definitions to the AJMC quote? For one thing, the one that I found so surprising, we discover that the kidneys do generate glucose. Why is that so surprising, you ask. Well, if you’re like me, all you’ve known is that the kidneys regulate glucose. Hmmm, and how do they do that? 

According to Medscape.com at https://emedicine.medscape.com/article/983678-overview#a4

“Under normal circumstances, the kidney filters and reabsorbs 100% of glucose, approximately 180 g (1 mole) of glucose, each day. The glucose transporters expressed in the renal proximal tubule ensure that less than 0.5 g/day (range 0.03-0.3 g/d) is excreted in the urine of healthy adults. More water than glucose is reabsorbed resulting in an increase in the glucose concentration in the urine along the tubule. Consequently the affinity of the transporters for glucose along the tubule increases to allow for complete reabsorption of glucose from the urine.” 

I know, I know. We need to take a look at these tubules they talk about. That’s what Wikipedia is for. Take a look at https://bit.ly/3pqlF5k for more specific information. 

“The proximal tubule is the segment of the nephron in kidneys which begins from the renal pole of the Bowman’s capsule to the beginning of loop of Henle.” 

This goes back to basic kidney anatomy, but if you’re anything like me, you need a reminder every once in a while. Keep in mind, also, that ‘renal’ is another way of saying kidney. Rather than explain what the Bowman’s capsule and the loop of Henle are, I’ve included a good illustration above. So, the kidneys regulate the glucose in our blood just as they regulate waste products. 

Again and again, readers ask me questions to which I need to respond, “I’m not a doctor and have never claimed to be one. You really need to ask your nephrologist.” That’s the truth. When I write a blog about a topic – especially a reader requested topic – I’m learning, just as you are. 

Until next week, 

Keep living your life!  

Have You Heard of This?

Fabry’s Disease. I’ve noticed some posts on Facebook about this and now I’ve been invited to join the Kidneys and Fabry’s Disease group on Facebook. It’s amazing timing since I had decided the day before being asked to join the group that I’d be writing about it for today’s blog. The fun part for me is that I know absolutely nothing about this disease, so I get to explore it. 

The first thing I learned is that it has multiple names. The National Organization for Rare Disorders (NORD) at https://rarediseases.org/rare-diseases/fabry-disease/ lists them as: 

  • “alpha-galactosidase A deficiency 
  • Anderson-Fabry disease 
  • angiokeratoma corporis diffusum 
  • angiokeratoma diffuse 
  • GLA deficiency” 

We’ll use the name Fabry’s Disease for this blog. 

Let’s start at the beginning with an explanation of what it is. You’re going to have to read this slowly and carefully… or, at least, I did. It’s from The National Fabry Disease Organization at https://www.fabrydisease.org/index.php/about-fabry-disease/what-is-fabry-disease

“Fabry disease is a rare genetic disorder caused by a defective gene (the GLA gene) in the body. In most cases, the defect in the gene causes a deficient quantity of the enzyme alpha-galactosidase A. This enzyme is necessary for the daily breakdown (metabolism) of a lipid (fatty substance) in the body called globotriaosylceramide abbreviated GL-3 or GB-3. When proper metabolism of this lipid and other similar lipids does not occur, GL-3 accumulates in the majority of cells throughout the body. The resulting progressive lipid accumulation leads to cell damage. The cell damage causes a wide range of mild to severe symptoms including potentially life-threatening consequences such as kidney failure, heart attacks and strokes often at a relatively early age. Fabry disease is a progressive, destructive and potentially life-threatening disease. Fabry disease can affect males and females of all ethnic and cultural backgrounds.” 

That does not sound good. I wondered if there were symptoms. Remember that sometimes – like in my case – Chronic Kidney Disease doesn’t have symptoms. WebMd at https://www.webmd.com/a-to-z-guides/fabry-disease#1 tells us you may experience the following: 

“Pain and burning in your hands and feet that get worse with exercise, fever, hot weather, or when you’re tired 

Small, dark red spots usually found between your bellybutton and knees 

Cloudy vision 

Hearing loss 

Ringing in the ears 

Sweating less than normal 

Stomach pain, bowel movements right after eating” 

This is definitely something I wouldn’t want to play around with. Remember we discovered earlier in the blog that it’s genetic. That means you inherit it. Cedars-Sinai, a Los Angeles nonprofit academic healthcare organization at https://www.cedars-sinai.org/health-library/diseases-and-conditions/f/fabrys-disease.html informs us: 

“There is no cure for Fabry’s disease. However, in some cases the disease can be stopped from progressing if treated early enough. The first treatment generally is an enzyme replacement therapy which works to normalize the body’s ability to break down the fat.” 

Healthline (Yes, that Healthline) at https://www.healthline.com/health/fabry-disease explains that Fabry’s Disease can be very serious: 

“…. It’s progressive and can be life-threatening. People with FD have a damaged gene that leads to a shortage of an essential enzyme. The shortage results in a buildup of specific proteins in the body’s cells, causing damage to the: 

heart 

lungs 

kidneys 

skin 

brain 

stomach 

The disease affects both men and women in all ethnic groups, but men are usually more severely affected.” 

Hopefully, you noticed ‘kidneys’ in the list above. That is why I’ve included this disease in the kidney disease blogs. I want to remind you that this is a rare disease and that the purpose of the blog is to inform, not frighten. 

Further complicating our explanation is that there are two kinds of Fabry’s Disease. I turned to Fabry Disease News at https://fabrydiseasenews.com/type-2-fabry-disease/ for more information. 

“Fabry disease primarily has two recognized forms — type 1 (classical form) is the most severe and is associated with very little or no alpha-galactosidase activity, while type 2 (late-onset form) is milder with some residual enzyme activity.” 

This makes me think of Diabetes. Type 1 occurs when there is no insulin produced, while Type 2 occurs when there is insulin resistance and is a milder form of Diabetes. 

I wanted more about kidney disease and Fabry’s Disease so I kept poking around and I found it on The U.S. Department of Health and Human Services’ National Institutes of Health’s National Center for Advancing Translational Sciences’ Genetic and Rare Disease Information Center (That is one long title.) at https://bit.ly/325QD8K,  

ACE inhibitors may be used to treat decreased kidney function (renal insufficiency). ACE inhibitors can reduce the loss of protein in the urine (proteinuria). If kidney function continues to decrease dialysis and/or kidney transplantation may be necessary. A kidney transplanted successfully into a person with Fabry disease will remain free of the harmful build up of the fatty acid GL3 and therefore will restore normal kidney function. However it will not stop the buildup of GL3 in other organs or systems of the body. In addition, all potential donors that are relatives of the person with known Fabry disease should have their genetic status checked to make sure they do not have a pathogenic variant (mutation) in the GLA gene (even if they do not have symptoms).” 

Does this sound familiar? It’s also what can happen in CKD without involving the other organs, of course. 

The National Institute of Health’s National Institute of Neurological Disorders and Stroke at https://bit.ly/35RQ6Ze offers opportunities to join clinical trials and provides Fabry Disease patient organizations. The organizations listed presently are: 

Fabry Support & Information Group 

 
National Fabry Disease Foundation 

 
National Organization for Rare Disorders (NORD) 

 
National Tay-Sachs and Allied Diseases Association 

My head is spinning with all this new information right now and I suppose yours is, too. Maybe it’s time to stop and let us both digest it. 

Until next week, 

Keep living your life! 

Stress Is as Stress Does

I have been so stressed lately. It’s the usual: Covid-19, the elections, etc. But then there are the personal reasons: my upcoming surgery, Bear’s cataract surgery and being his caretaker, the third under-the-slab water leak in our house, and my brother’s ill health come to mind right away. I do take time to quietly read, play Word Crush, or watch a movie, but the stress is still there… and my blood glucose numbers are going up. “Is there a correlation?” I wondered. 

You may remember (I certainly do) that Healthline included this blog in the Best Kidney Disease Blogs for 2016 & 2017. They like my work; I like theirs, so I went to their website to see what I could find about stress and diabetes. I have diabetes type 2, by the way. That’s the type in which you produce insulin, but your body doesn’t use it well. 

Okay, now let’s see what Healthline at https://bit.ly/2TIHwWZ has to say: 

“… But there’s a problem. The body can’t differentiate between danger and stress. Both trigger fight-or-flight. 

So today’s most common ‘danger’ isn’t wild animals. It’s the letter from the IRS. There’s no quick resolution — no violent fight, no urgent need to run for miles. Instead, we sit in our sedentary homes and workplaces, our bodies surging with sugar, with no way to burn it off. 

That’s how stress messes with diabetes. Acute stress floods us with unwanted (and un-medicated) sugar. Chronic stress is like a leaking faucet, constantly dripping extra sugar into our systems. The impact on blood sugar caused by stress is so significant that some researchers feel it serves as a trigger for diabetes in people already predisposed to developing it.” 

Wait a minute here. “Acute stress floods us with unwanted (and un-medicated) sugar.” How does it do that? The answer I liked best is from Lark at https://bit.ly/3ebZU4b. Yes, Lark is a company that produces electronic aids for various stages of diabetes, but it also offers short, easy to understand explanations of what’s happening to your diabetes during different situations. 

“Cortisol signals your brain and body that it is time to prepare to take action. You may be able feel this as your heart pounds and muscles tense. At the same time, what you may not feel is that cortisol signals a hormone called glucagon to trigger the liver to release glucose (sugar) into your bloodstream. The result: higher blood sugar. 

Cortisol’s role in preparing your body for action goes beyond mobilizing glucose stores. Cortisol also works to make sure that the energy that you might spend (whether fighting a bear or running to stop your toddler from toddling into the street) gets replenished. That means you may feel hungry even when you do not truly need the food – and that can lead to weight gain. Again, the result is an increase in blood sugar.” 

Quick reminder: 

“Think of cortisol as nature’s built-in alarm system. It’s your body’s main stress hormone. It works with certain parts of your brain to control your mood, motivation, and fear. 

Your adrenal glands — triangle-shaped organs at the top of your kidneys — make cortisol. 

It’s best known for helping fuel your body’s ‘fight-or-flight’ instinct in a crisis, but cortisol plays an important role in a number of things your body does. For example, it: 

  • Manages how your body uses carbohydrates, fats, and proteins 
  • Keeps inflammation down 
  • Regulates your blood pressure 
  • Increases your blood sugar (glucose) 
  • Controls your sleep/wake cycle 
  • Boosts energy so you can handle stress and restores balance afterward” 

Thank you to WebMD at https://wb.md/35RaDgr for the above information. 

Let’s get back to how we end up with excess sugar in our blood due to both acute (sudden) and/or chronic (long term) stress. Diabetes Education Online, part of the Diabetes Teaching Center at the University of California, San Francisco, offers the following explanation. You can find out more by going to their website at https://bit.ly/3oNXgqi.    

“During stressful situations, epinephrine (adrenaline), glucagon, growth hormone and cortisol play a role in blood sugar levels. Stressful situations include infections, serious illness or significant emotion stress. 

When stressed, the body prepares itself by ensuring that enough sugar or energy is readily available. Insulin levels fall, glucagon and epinephrine (adrenaline) levels rise and more glucose is released from the liver. At the same time, growth hormone and cortisol levels rise, which causes body tissues (muscle and fat) to be less sensitive to insulin. As a result, more glucose is available in the blood stream.” 

Now I’m stressed about being stressed… and that’s after trying to keep my stress levels down so I don’t make my Chronic Kidney Disease worse… now I find it’s also making my diabetes worse. What, in heaven’s name, will happen if I continue to be this stressed? 

I went right to The National Kidney Foundation at https://bit.ly/2HQVsvs for an answer I could trust. 

“The combined impacts of increased blood pressure, faster heart rate, and higher fats and sugar in your blood can contribute to a number of health problems, including high blood pressure, diabetes, and heart disease (also known as cardiovascular disease). 

Stress and uncontrolled reactions to stress can also lead to kidney damage. As the blood filtering units of your body, your kidneys are prone to problems with blood circulation and blood vessels. High blood pressure and high blood sugar can place an additional strain or burden on your kidneys. People with high blood pressure and diabetes are at a higher risk for kidney disease. People with kidney disease are at higher risk for heart and blood vessel disease. If you already have heart and blood vessel disease and kidney disease, then the body’s reactions to stress can become more and more dangerous.” 

Oh, my! I think I’d better quietly read, play Word Crush, or watch a movie right now.  

Before I leave, I did want to let you know a $10 million Kidney Prize competition has been launched. If you’re seriously interested, go to https://akp.kidneyx.org. According to their website, KidneyX is 

“The Kidney Innovation Accelerator (KidneyX), a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN), is accelerating innovation in the prevention, diagnosis, and treatment of kidney diseases.” 

Until next week, 

Keep living your life! 

You Think It’s All in Your Head?

As I was sitting in my allergist’s office last week, I started to wonder if Chronic Kidney Disease had anything to do with my runny nose. I’d thought it was the usual seasonal allergies, but over the last dozen years or so I’ve learned that almost every malady I experience has some kind of relation to my kidneys…  so why not the runny nose? 

The American Kidney Fund at https://bit.ly/3kvpjb9 explains for us: 

“Granulomatosis with polyangiitis (GPA), formerly known as Wegener’s granulomatosis, is a disease that causes swelling and irritation of blood vessels in the kidneys, nose, sinuses, throat and lungs. Swollen blood vessels make it harder for blood to get to the organs and tissues that need it, which can be harmful. The disease also causes lumps called granulomas to form and damage the area around them. In some people GPA only affects the lungs. GPA that affects the kidneys can lead to chronic kidney disease and kidney failure.” 

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://cle.clinic/3mjudss tells us, 

“People with GPA who have critical organ system involvement are generally treated with corticosteroids [Gail here: commonly just called steroids] combined with another immunosuppressive medication such as cyclophosphamide (Cytoxan ®) or rituximab (Rituxan®). In patients who have less severe GPA, corticosteroids and methotrexate can be used initially. The goal of treatment is to stop all injury that is occurring as a result of GPA. If disease activity can be completely ‘turned off,’ this is called ‘remission.’ Once it is apparent that the disease is improving, doctors slowly reduce the corticosteroid dose and eventually hope to discontinue it completely. When cyclophosphamide is used, it is only given until the time of remission (usually around 3 to 6 months), after which time it is switched to another immunosuppressive agent, such as methotrexate, azathioprine (Imuran®), or mycophenolate mofetil (Cellcept®) to maintain remission. The treatment duration of the maintenance immunosuppressive medication may vary between individuals. In most instances, it is given for a minimum of 2 years before consideration is given to slowly reduce the dose toward discontinuation.” 

If this sounds familiar, you’re right. It’s straight out of this year’s May 25th blog. Aha! Now we see the value of using the category drop down to the right of the blog. 

Anyway, while this is interesting (to me, at least), it’s not answering my question: Can CKD cause sinus problems. What was that? You want to know what a runny nose has to do with your sinuses? Let’s find out.  

I returned to the ever-reliable Cleveland Clinic, this time at https://cle.clinic/2FXOm7Q,  for some information: 

“Sinusitis is an inflammation, or swelling, of the tissue lining the sinuses. The sinuses are four paired cavities (spaces) in the head. They are connected by narrow channels. The sinuses make thin mucus that drains out of the channels of the nose. This drainage helps keep the nose clean and free of bacteria. Normally filled with air, the sinuses can get blocked and filled with fluid. When that happens, bacteria can grow and cause an infection (bacterial sinusitis). 

This is also called rhinosinusitis, with ‘rhino’ meaning ‘nose.’ The nasal tissue is almost always swollen if sinus tissue is inflamed.” 

It seems that you need a runny nose to avoid sinusitis. Is that right? I don’t think so, and neither does MedicineNet at https://www.medicinenet.com/sinusitis/article.htm.  

“Sinusitis signs and symptoms include 

sinus headache, 

facial tenderness, 

pressure or pain in the sinuses, in the ears and teeth, 

fever, 

cloudy discolored nasal or postnasal drainage, [I bolded this symptom.] 

feeling of nasal stuffiness, 

sore throat, 

cough, and 

occasionally facial swelling.” 

So, now it seems that a runny nose can be a symptom of sinusitis. 

Photo by Andrea Piacquadio on Pexels.com

And how does that fit in with having CKD? Before we answer that, I think we need to straighten out the differences between allergy and cold symptoms since both conditions may cause sinusitis. 

“The symptoms of allergies and sinusitis overlap a lot. Both can give you a stuffy nose. If it’s allergies, you may also have: 

Runny nose and sneezing 

Watery or itchy eyes 

Wheezing 

If it’s sinusitis, besides a stuffy nose, you may have: 

Thick, colored mucus 

Painful, swollen feeling around your forehead, eyes, and cheeks 

Headache or pain in your teeth 

Post-nasal drip (mucus that moves from the back of your nose into your throat) 

Bad breath 

Cough and sore throat 

Fatigue 

Light fever” 

Thank you to WebMD at https://www.webmd.com/allergies/sinusitis-or-allergies for the list above.  

 On to my original question. This is from Vick’s at https://vicks.com/en-us/treatments/how-to-treat-a-cold/how-to-stop-a-runny-nose. (Who better to go to than a trusted friend since childhood?)  

“A runny nose is a discharge of mucus from the nostrils. It’s the result of excess nasal mucus production. The excess nasal mucus leads to watery nasal secretions that flow out of your nostrils or drip down into your throat. A runny nose is a discharge of mucus from the nostrils. It’s the result of excess nasal mucus production. The excess nasal mucus leads to watery nasal secretions that flow out of your nostrils or drip down into your throat. Nasal congestion is due to the inflammation of the linings of the nasal cavity.” 

Did you notice the word “inflammation” in the last sentence? Ahem, an article by Oleh M Akchurin of Weill Cornell Medical College and Frederick J Kaskel of Albert Einstein College of Medicine published by ResearchGate at https://bit.ly/3jtVzKL states: 

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients.”   

And there you have it. Your (and my) runny nose can be caused – in part – from having CKD. Inflammation is the name of the game if you have Chronic Kidney Disease. 

Although, in these times, I wonder if Covid-19 might somehow be involved in certain cases. Just remember, I’m not a doctor and never claimed to be one, so this just might be a question for your medical provider. 

Until next week, 

Keep living your life! (Safely: mask up, wash up, social distance) 
 

Cellulitis, CKD, and Diabetes

My uncle-in-law had it. My children’s father had it. My husband had it. Now the question is what is cellulitis? 

WebMd at https://www.webmd.com/skin-problems-and-treatments/guide/cellulitis#1 answers: 

“Cellulitis is a common infection of the skin and the soft tissues underneath. It happens when bacteria enter a break in the skin and spread. The result is infection, which may cause swelling, redness, pain, or warmth.” 

Alright, but what does that have to do with Chronic Kidney Disease. By the way, only one of the men mentioned in the first paragraph has CKD.  

According to the NHS (National Health Service) in the United Kingdom at https://bit.ly/2IJJrbT: 

“You’re more at risk of cellulitis if you: 

  • have poor circulation in your arms, legs, hands or feet – for example, because you’re overweight 
  • find it difficult to move around 
  • have a weakened immune system because of chemotherapy treatment or diabetes [Gail here: I bolded that.] 
  • have bedsores (pressure ulcers) 
  • have lymphoedema, which causes fluid build-up under the skin 
  • inject drugs 
  • have a wound from surgery 
  • have had cellulitis before” 

Two of the men above were overweight, but one of these did not have CKD. The overweight man who had CKD also had diabetes. One had a wound from surgery which was the cause of his cellulitis. Another had had cellulitis before. (Does this sound like one of those crazy math word questions?) 

CKD is not a cause? Whoa! Whoa! Whoa! Wait just a minute here. Let’s remember that CKD gives you the lovely present of a compromised immune system. A compromised immune system means it doesn’t do such a great job of preventing illnesses and infections. 

Also remember that diabetes is the leading cause of CKD and diabetes can also weaken your immune system. I needed more information about diabetes doing that and I got it from The University of Michigan’s Michigan Medicine at https://www.uofmhealth.org/health-library/uq1148abc:    

“High blood sugar from diabetes can affect the body’s immune system, impairing the ability of white blood cells to come to the site of an infection, stay in the infected area, and kill microorganisms. Because of the buildup of plaque in blood vessels associated with diabetes, areas of infection may receive a poor blood supply, further lowering the body’s ability to fight infections and heal wounds.” 

Remember that cellulitis is an infection. Reading the above, I became aware that I didn’t know anything about plague in the blood vessels and diabetes, so I went right to what I consider the source for vascular information, Vascular.org. This time at https://bit.ly/31dZ0yI:  

“Peripheral artery (or arterial) disease, also known as PAD, occurs when plaque builds up in the arteries and reduces blood flow to the feet and legs. Fairly common among elderly Americans, PAD is even more likely among those with diabetes, which increases plaque buildup.” 

All three of these men were elderly, if you consider in your 70s elderly. Of course, I don’t since I’m in my 70s, but we are talking science here. 

Hmmm, we don’t know yet how cellulitis is treated, do we? Let’s find out. I turned to my old buddy, The MayoClinic at https://www.mayoclinic.org/diseases-conditions/cellulitis/diagnosis-treatment/drc-20370766:  

“Cellulitis treatment usually includes a prescription oral antibiotic. Within three days of starting an antibiotic, let your doctor know whether the infection is responding to treatment. You’ll need to take the antibiotic for as long as your doctor directs, usually five to 10 days but possibly as long as 14 days. 

In most cases, signs and symptoms of cellulitis disappear after a few days. You may need to be hospitalized and receive antibiotics through your veins (intravenously) if: 

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

Usually, doctors prescribe a drug that’s effective against both streptococci and staphylococci. It’s important that you take the medication as directed and finish the entire course of medication, even after you feel better. 

Your doctor also might recommend elevating the affected area, which may speed recovery…. 

Try these steps to help ease any pain and swelling: 

Place a cool, damp cloth on the affected area as often as needed for your comfort. 

Ask your doctor to suggest an over-the-counter pain medication to treat pain. [Gail again: no NSAIDS, you have CKD.] 

Elevate the affected part of your body.” 

Now the obvious question is how, as CKD patients and possibly diabetics, do we avoid that infection in the first place? 

“Cellulitis cannot always be prevented, but the risk of developing cellulitis can be minimised by avoiding injury to the skin, maintain [sic] good hygiene and by managing skin conditions like tinea and eczema. 

A common cause of infection to the skin is via the fingernails. Handwashing is very important as well as keeping good care of your nails by trimming and cleaning them. Generally maintaining good hygiene such as daily showering and wearing clean clothes may help reduce the skin’s contact with bacteria. 

If you have broken skin, keep the wound clean by washing daily with soap and water or antiseptic. Cover the wound with a gauze dressing or bandaid every day and watch for signs of infection. 

People who are susceptible to cellulitis, for example people with diabetes or with poor circulation, should take care to protect themselves with appropriate footwear, gloves and long pants when gardening or bushwalking, when it’s easy to get scratched or bitten. Look after your skin by regularly checking your feet for signs of injury, moisturising the skin and trimming fingernails and toenails regularly.” 

Thank you to Australia’s HealthDirect at https://www.healthdirect.gov.au/cellulitis-prevention for these common sense reminders. Actually, we need to keep washing our hands while Covid-19 is at our door anyway, so we’ve already got that part of the prevention covered. I suspect that many of us don’t bother to deal with small wounds, but it looks like we’d better start. 

What if you do develop cellulitis? How will you be treated? My old buddy, The Mayo Clinic at https://mayocl.in/2FDxUtf tells us: 

“Cellulitis treatment usually includes a prescription oral antibiotic. Within three days of starting an antibiotic, let your doctor know whether the infection is responding to treatment. You’ll need to take the antibiotic for as long as your doctor directs, usually five to 10 days but possibly as long as 14 days. 

In most cases, signs and symptoms of cellulitis disappear after a few days. You may need to be hospitalized and receive antibiotics through your veins (intravenously) if: 

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

Usually, doctors prescribe a drug that’s effective against both streptococci and staphylococci. It’s important that you take the medication as directed and finish the entire course of medication, even after you feel better. 

Your doctor also might recommend elevating the affected area, which may speed recovery.” 

Until next week, 

Keep living your life! (Safely, please) 

 

Oh, S**T!

Cute, huh? Especially since I’ll be writing about feces or, as it’s commonly called these days, poo. Defecation (or pooing, if you’d rather) is an important topic for those of us with Chronic Kidney Disease. Did you know CKD can lead to constipation? 

Photo by Pixabay on Pexels.com

Well, how do you know if you have constipation? The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253 explains: 

  • “Passing fewer than three stools a week 
  • Having lumpy or hard stools 
  • Straining to have bowel movements 
  • Feeling as though there’s a blockage in your rectum that prevents bowel movements 
  • Feeling as though you can’t completely empty the stool from your rectum 
  • Needing help to empty your rectum, such as using your hands to press on your abdomen and using a finger to remove stool from your rectum” 

Sometimes, medication can be the cause of constipation. According to the International Foundation of Gastrointestinal Disorders at https://www.iffgd.org/diet-treatments/medications/medications-that-can-affect-colonic-function.html

“Constipation can be caused by a variety of medications. These medications affect the nerve and muscle activity in the large intestine (colon) and may also bind intestinal liquid. This may result in slowed colonic action (slow and/or difficult passing of stool).” 

Maybe we need to know what happens in your body during constipation? This is what the Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4059-constipation has to say: 

“Constipation happens because your colon absorbs too much water from waste (stool/poop), which dries out the stool making it hard in consistency and difficult to push out of the body. 

To back up a bit, as food normally moves through the digestive tract, nutrients are absorbed. The partially digested food (waste) that remains moves from the small intestine to the large intestine, also called the colon. The colon absorbs water from this waste, which creates a solid matter called stool. If you have constipation, food may move too slowly through the digestive tract. This gives the colon more time – too much time – to absorb water from the waste. The stool becomes dry, hard, and difficult to push out.” 

Photo by August de Richelieu on Pexels.com

We’re Chronic Kidney Disease patients. That means some of the foods recommended to alleviate constipation may not be allowed on our renal diets. For instance, dried raisin, apricots, and prunes are too high in potassium for CKD patients, although they are helpful if you’re experiencing constipation. You need to speak with your renal dietitian before changing your diet. 

I turned to a new site, BMC at https://rrtjournal.biomedcentral.com/articles/10.1186/s41100-019-0246-3 for information about constipation that is particular to CKD patients. BMC has “an evolving portfolio of some 300 peer-reviewed journals, sharing discoveries from research communities in science, technology, engineering and medicine,” as stated on their website.   

“Accumulating evidence has revealed a relationship between constipation and cardiovascular disease and CKD. The pathogenesis of constipation in CKD patients is multifactorial: decreased physical activity, comorbidities affecting bowel movement, such as diabetes mellitus, cerebrovascular disease, and hyperparathyroidism, a restricted dietary intake of plant-based fiber-rich foods, and multiple medications, including phosphate binders and potassium-binding resins, have all been implicated. CKD is associated with alterations in the composition and function of the gut microbiota, so-called gut dysbiosis.” 

Oh goody, a term I don’t know. Remember VeryWell Health? This is their definition of gut dysbiosis at https://www.verywellhealth.com/what-is-intestinal-dysbiosis-1945045#:~:text=Overview,the%20microorganisms%20within%20our%20intestines

“Gut microbiota dysbiosis, also known as intestinal or gastrointestinal dysbiosis, refers to a condition in which there is an imbalance of the microorganisms within our intestines. These microorganisms, collectively known as gut flora, consist predominantly of various strains of bacteria, and to a lesser extent include fungi and protozoa. The gut flora are essential for digestion and immune functioning….  A state of dysbiosis, therefore, will result in digestive and other systemic symptoms.” 

Photo by Anna Shvets on Pexels.com

Aha, so that’s why I take probiotics. I not only have CKD, but Diabetes Type 2, and have had chemotherapy which is known to cause this problem. I always wondered what the probiotics did for me. We’ll find out right now. WebMD at https://www.webmd.com/digestive-disorders/what-are-probiotics was helpful here: 

“Researchers are trying to figure out exactly how probiotics work. Some of the ways they may keep you healthy: 

  • When you lose ‘good’ bacteria in your body, for example after you take antibiotics, probiotics can help replace them. 
  • They can help balance your ‘good’ and ‘bad’ bacteria to keep your body working the way it should.” 

Prebiotics are also recommended. I get it that ‘pre’ is a suffix (group of letters added before a word to change its meaning) indicating ‘before,’ but still, what do they do for us?  Here’s what the Mayo Clinic at https://www.mayoclinic.org/prebiotics-probiotics-and-your-health/art-20390058 has to say about prebiotics, 

“Prebiotics are specialized plant fibers. They act like fertilizers that stimulate the growth of healthy bacteria in the gut. 

Prebiotics are found in many fruits and vegetables, especially those that contain complex carbohydrates, such as fiber and resistant starch. These carbs aren’t digestible by your body, so they pass through the digestive system to become food for the bacteria and other microbes.” 

To sum it all up: 

“Constipation is one of the most common gastrointestinal disorders among patients with chronic kidney disease (CKD) partly because of their sedentary lifestyle, low fiber and fluid intake, concomitant medications (e.g., phosphate binders), and multiple comorbidities (e.g., diabetes). Although constipation is usually perceived as a benign, often self-limited condition, recent evidence has challenged this most common perception of constipation. The chronic symptoms of constipation negatively affect patients’ quality of life and impose a considerable social and economic burden. Furthermore, recent epidemiological studies have revealed that constipation is independently associated with adverse clinical outcomes, such as end-stage renal disease (ESRD), cardiovascular (CV) disease, and mortality, potentially mediated by the alteration of gut microbiota and the increased production of fecal metabolites. Given the importance of the gut in the disposal of uremic toxins and in acid-base and mineral homeostasis with declining kidney function, the presence of constipation in CKD may limit or even preclude these ancillary gastrointestinal roles, potentially contributing to excess morbidity and mortality….” 

Thank you to the National Institutes of Health’s U.S. Library of Medicine’s National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7000799/ for their summary of the problem. Before I end this blog, I ask you to make sure you notice the mention of “the disposal of uremic toxins” above. 

Until next week, 

Keep living your life! 

Baby, It’s Hot Outside.

As a person with arthritis among other maladies, I regularly see my rheumatologist. “A rheumatologist is a board certified internist or pediatrician who is qualified by additional training and experience in the diagnosis and treatment of arthritis and other diseases of the joints, muscles, and bones,” according to HSS at https://www.hss.edu/rheumatology-rheumatologist.asp. During my appointment, she mentioned that my GFR (Glomerular Filtration Rate) was 46.

Panic! It’s almost always in the low 50s. She calmed me down by telling me that GFR is usually lower during the Arizona heat (I know, I know: but it’s a dry heat.) of the summer. I don’t know why I was surprised. It made sense.

Think about it. Let me re-enforce this with a statement taken from study on PubMed at https://pubmed.ncbi.nlm.nih.gov/21617334/.

“However, the percent change in eGFR from spring to summer was greater in hypertensive patients with CKD… than in those without CKD …. “

PubMed is part of the National Institutes of Health’s National Library of Medicine’s National Center for Biotechnology Information.

I know hypertension (high blood pressure) is included in this statement, but the fact that GFR is lowered t than it’s lowered in those without hypertension leads us to the realization that those without hypertension DO have lower GFRs during the summer heat.

Another study from EuropePMC at https://europepmc.org/article/med/28946962 tells us:

“Recurrent dehydration in people regularly exposed to high temperatures seems to be resulting in an unrecognised cause of proteinuric chronic kidney disease, the underlying pathophysiological mechanism of which is becoming better understood. However, beyond heat waves and extreme temperatures, there is a seasonal variation in glomerular filtration rate that may contribute to the onset of renal failure and electrolyte disorders during extremely hot periods.”

Here are a couple of definitions you may need to understand the above statement. The first is from The Mayo Clinic at https://www.mayoclinic.org/symptoms/protein-in-urine/basics/definition/sym-20050656.

“Protein in urine — known as proteinuria (pro-tee-NU-ree-uh) — is excess protein found in a urine sample. Protein is one of the substances identified during a test to analyze the content of your urine (urinalysis).

Low levels of protein in urine are normal. Temporarily high levels of protein in urine aren’t unusual either, particularly in younger people after exercise or during an illness.

Persistently high levels of protein in urine may be a sign of kidney disease.”

The following definition is from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=10691.

“Pathophysiology: Deranged function in an individual or an organ due to a disease.”

So, it looks like dehydration is a key factor in lowering the GFR during the summer heat. We know that dialysis patients need to limit their liquid intake, but what about those of us who are not on dialysis but do have CKD (Chronic Kidney Disease)?

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/153363#symptoms for some facts about dehydration:

“Around three-quarters of the human body is water.

The causes of dehydration include diarrhea, vomiting, and sweating.

Individuals more at risk of dehydration include athletes, people at higher altitudes, and older adults.

Early symptoms of dehydration include dry mouth, lethargy, and dizziness.”

Did you notice “sweating” and for those of a certain age like me “older adults”?

So, I gather I’m sweating out more liquids than I’m taking in. But how does that work exactly? I thought I was drinking sufficient amounts of fluid.

Biology Online at https://www.biologyonline.com/dictionary/sweating was a bit of an eye opener.

“Sweating is a way of our body to regulate body temperature. It is commonly used as a synonym for perspiration but in stricter sense perspiration pertains to the water loss as a cooling mechanism of the body and therefore It (sic) includes both the release of watery, salty fluid through the pores of the skin from the sweat glands and the evaporation of water from the skin (trans-epithelial) and respiratory tract. Thus, there exist two forms of perspiration, the sensible and the insensible water loss. In sweating, the process always entails the loss of both water and solutes…. The salty fluid is secreted as droplets or moist on the skin and is called as sweat. Environmental cues that could stimulate the body to produce sweat are high temperature and humidity of the surroundings.”

Oh, solutes. Those include the electrolytes that are so important to us as CKD patients. Orthology at https://orthology.com/myth-debunked-need-electrolytes-work/ offers us a simple explanation:

“The warmer the weather and the more you sweat, the more likely you’ll need electrolyte replacement. Again, this is just a general guideline and will differ by individual, activity and other factors. Pay attention to signs that your electrolyte levels are too low, such as muscle cramps, fatigue, dizziness, nausea or mental confusion.”

Aha, it’s excessively hot out. We drink more, but more sweat is being produced the higher the temperature is. When we sweat or perspire (since the two words are often used interchangeably), we are also exuding electrolytes. Now it all makes sense. An imbalance of electrolytes could lower your GFR. I turned to Tampa Cardio at https://tampacardio.com/causes-electrolyte-imbalance-body/ for confirmation.

“Electrolyte imbalances can cause a wide range of symptoms, some mild and some potentially life threatening. Electrolyte imbalances are commonly caused by loss of fluids through prolonged diarrhea, vomiting, sweating or high fever.”

But we’re already having problems with our electrolytes. No wonder excessive heat affects our GFR. As the University of Michigan’s Michigan Medical at https://www.uofmhealth.org/conditions-treatments/kidney/fluid-and-electrolyte-disorders states:

“Changes in the body’s levels of minerals including potassium, magnesium, calcium and sodium—and the corresponding impact these have on the body’s function, muscle strength and heart rhythm can be associated with disorders of kidney or endocrine glands.

Got it. Let’s all just stay in the air conditioning so we don’t lower our GFRs even more than the excessive heat does. In Arizonia, that probably means until November this year. That was a joke (I hope).

Until next week,

Keep living your life!

They Go Together… Sometimes 

I’m certain you’ve already read about Covid-19 causing Acute Kidney Injury (AKI). To the best of our knowledge, it’s airborne which means the lungs are involved. But did you know there’s a correlation between the lungs and the kidneys?

Think of it this way. You know Chronic Kidney Disease (CKD) can be the cause of diabetes (sigh, that’s me) or hypertension (high blood pressure). You also know that hypertension can be the cause of CKD (sigh, that’s me again.) Well, AKI can be the cause of Acute Lung Disease (ALI) and ALI can be the cause of Acute Kidney Disease.

I know I just blindsided you with a new medical term, so let’s find out just what ALI is.  I went to The National Organization for Rare Disorders at https://rarediseases.org/rare-diseases/acute-respiratory-distress-syndrome/ for what turned out to be a rather comprehensive answer:

“Acute respiratory distress syndrome (ARDS) is a type of severe, acute lung dysfunction affecting all or most of both lungs that occurs as a result of illness or injury. Although it is sometimes called adult respiratory distress syndrome, it may also affect children. ARDS is a buildup of fluid in the small air sacs (alveoli) in the lungs. This makes it difficult for oxygen to get into the bloodstream.”

Ah, so ALI and Acute Respiratory Distress Syndrome (ARDS) are one and the same. That should make finding information about it a bit easier.

We’ve just learned that ALI can cause AKI and vice-versa, but what can cause ALI beside Covid-19? This list is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/ards/symptoms-causes/syc-20355576. Notice they do include COVID-19 as a cause of ARDS.

  • “Sepsis. The most common cause of ARDS is sepsis, a serious and widespread infection of the bloodstream.
  • Inhalation of harmful substances. Breathing high concentrations of smoke or chemical fumes can result in ARDS, as can inhaling (aspirating) vomit or near-drowning episodes.
  • Severe pneumonia. Severe cases of pneumonia usually affect all five lobes of the lungs.
  • Head, chest or other major injury. Accidents, such as falls or car crashes, can directly damage the lungs or the portion of the brain that controls breathing.
  • Coronavirus disease 2019 (COVID-19). People who have severe COVID-19 may develop ARDS.
  • Others. Pancreatitis (inflammation of the pancreas), massive blood transfusions and burns.”

We can probably guess that one of the symptoms of ALI or ARDS is breathlessness, but let’s see if there are any others. I decided to go to Healthline at https://www.healthline.com/health/acute-respiratory-distress-syndrome#symptoms for this information. Yep, breathlessness is not the only symptom of ARDS.

  • “labored and rapid breathing
  • muscle fatigue and general weakness
  • low blood pressure
  • discolored skin or nails
  • a dry, hacking cough
  • a fever
  • headaches
  • a fast pulse rate
  • mental confusion”

This is not looking good at all. I’m wondering how ALI is treated now. The American Lung Association at https://www.lung.org/lung-health-diseases/lung-disease-lookup/ards/ards-treatment-and-recovery was detailed in explaining.

Ventilator support

All patients with ARDS will require extra oxygen. Oxygen alone is usually not enough, and high levels of oxygen can also injure the lung. A ventilator is a machine used to open airspaces that have shut down and help with the work of breathing. The ventilator is connected to the patient through a mask on the face or a tube inserted into the windpipe.

Prone positioning

ARDS patients are typically in bed on their back. When oxygen and ventilator therapies are at high levels and blood oxygen is still low, ARDS patients are sometimes turned over on their stomach to get more oxygen into the blood. This is called proning and may help improve oxygen levels in the blood for a while. It is a complicated task and some patients are too sick for this treatment.

Sedation and medications to prevent movement

To relieve shortness of breath and prevent agitation, the ARDS patient usually needs sedation. Sometimes added medications called paralytics are needed up front to help the patient adjust to the ventilator. These medications have significant side effects and their risks and benefits must be continuously monitored.

Fluid management

Doctors may give ARDS patients a medication called a diuretic to increase urination in hopes of removing excess fluid from the body to help prevent fluid from building up in the lungs. This must be done carefully, because too much fluid removal can lower blood pressure and lead to kidney problems.

Extracorporeal membrane oxygenation (ECMO)

ECMO is a very complicated treatment that takes blood outside of your body and pumps it through a membrane that adds oxygen, removes carbon dioxide and then returns the blood to your body. This is a high-risk therapy with many potential complications. It is not suitable for every ARDS patient.”

Now that we understand what ALI/ARDS is, what – in heaven’s name – does it have to do with AKI?

“Renal failure is a frequent complication of ARDS, particularly in the context of sepsis. Renal failure may be related to hypotension, nephrotoxic drugs, or underlying illness. Fluid management is complicated in this context, especially if the patient is oliguric. Multisystem organ failure, rather than respiratory failure alone, is usually the cause of death in ARDS.”

Thank you Medscape at https://www.medscape.com/answers/165139-43289/why-is-renal-failure-a-frequent-complication-of-acute-respiratory-distress-syndrome-ards for the explanation.  I think a few definitions are in order to adequately understand this explanation.

“Sepsis refers to a bacterial infection in the bloodstream or body tissues. This is a very broad term covering the presence of many types of microscopic disease-causing organisms.

Hypotension is the medical term for low blood pressure.

Nephrotoxic is toxic, or damaging, to the kidney.

(Oligoric is the adjective meaning of or pertaining to oligoria.)

Oliguria or oliguresis is the noun meaning the excretion of an abnormally small volume of urine, often as the result of a kidney disorder.”

All the above definitions were paraphrased from The Free Dictionary by Farlex, Medical Dictionary.

You probably know more than you wanted to about the connection between Covid-19, your lungs, and your kidneys than you ever intended to find out by now. Don’t be frightened, but do wear your mask and continue to social distance. Oh, and don’t forget the hand sanitizer.

Until next week,

Keep living your life!

“klot” + “id” 

No, that’s not the result of misplacing my fingers on the keyboard. According to https://youglish.com/pronounce/clotted/english, this is the correct two syllable pronunciation of the word clotted. My all-time favorite dictionary, the Merriam-Webster, at https://www.merriam-webster.com/dictionary/clotted defines the adjective (word describing a noun) clotted as:

“1: a portion of a substance adhering together in a thick nondescript mass (as of clay or gum)

2 a: a roundish viscous lump formed by coagulation of a portion of liquid or by melting

b: a coagulated mass produced by clotting of blood”

You’re right – it’s the second definition we’ll be dealing with today. Why? A long-time reader was telling me about his blood clot when I suddenly realized I had no idea if there were any connection at all between Chronic Kidney Disease and blood clots.

As it turns out, there is.  The following is from the National Kidney Foundation at https://www.kidney.org/sites/default/files/Blood_Clots_And_CKD_2018.pdf:

“CKD may put you at higher risk for VTE. The reasons for this are not well understood. The connection may depend on what caused your CKD and how much kidney damage you have. No matter the reason, CKD may make it easier for your body to form blood clots. The risk for VTE is seen more often in people with nephrotic syndrome (a kidney problem that causes swelling, usually of the ankles, a high level of protein in the urine, and a low level of a protein called albumin in the blood).”

I have a question already. What is VTE? I found World Thrombosis Day’s explanation at www.worldthrombosisday.org › issue › vte the most helpful.

“Venous thromboembolism (VTE) is a condition in which a blood clot forms most often in the deep veins of the leg, groin or arm (known as deep vein thrombosis, DVT) and travels in the circulation, lodging in the lungs (known as pulmonary embolism, PE).”

How could I have CKD for over a dozen years and not know this? Many thanks to my reader and online friend for bringing it up. 

Well, it’s back to the beginning for us. How is VTE diagnosed? The Centers for Disease Control and Prevention (CDC) at www.cdc.gov › ncbddd › dvt › diagnosis-treatment was helpful here.

“Duplex ultrasonography is an imaging test that uses sound waves to look at the flow of blood in the veins. It can detect blockages or blood clots in the deep veins. It is the standard imaging test to diagnose DVT. A D-dimer blood test measures a substance in the blood that is released when a clot breaks up.”

Let’s take a closer look at the D-dimer blood test. That’s another new one for me. My old standby, MedlinePlus (This time at https://medlineplus.gov/lab-tests/d-dimer-test/.) offered the following which more than satisfactorily answered my question.

“A D-dimer test looks for D-dimer in blood. D-dimer is a protein fragment (small piece) that’s made when a blood clot dissolves in your body.

Blood clotting is an important process that prevents you from losing too much blood when you are injured. Normally, your body will dissolve the clot once your injury has healed. With a blood clotting disorder, clots can form when you don’t have an obvious injury or don’t dissolve when they should. These conditions can be very serious and even life-threatening. A D-dimer test can show if you have one of these conditions.”

By the way, MedlinePlus is part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health.

This brings me to another question. How would you or your doctor even know you may need this test?

“According to the Centers for Disease Control and Prevention (CDC), about half of people with DVT don’t have symptoms. Any symptoms that do occur will be in the affected leg or the area where the clot is found. Symptoms can include:

pain

redness of the skin

warmth of the skin

swelling of the area

If the clot moves into the lungs and you develop PE, you may have symptoms such as:

chest pain, which may get worse when you breathe deeply or cough

coughing

coughing up blood

dizziness or even fainting

rapid shallow breathing, or tachypnea

rapid heartbeat

irregular heartbeat

shortness of breath”

Thank you to Healthline at https://www.healthline.com/health/dvt-vs-pulmonary-embolism for the above information.

Now we know what VTE is, what symptoms you may experience, and the test to take to confirm that you do, indeed, have VTE. You know what comes next. How do we treat VTE once it’s confirmed?

These are some, but not all, of the treatments that may be recommended. I discovered them on WebMD’s site at https://www.webmd.com/dvt/what-is-venous-thromboembolism.

“Blood thinners. These drugs don’t break up the clot, but they can stop it from getting bigger so your body has time to break it down on its own. They include heparin, low-molecular-weight heparin, apixaban (Eliquis), edoxaban (Savaysa), rivaroxaban (Xarelto), and warfarin (Coumadin).

Clot-busting drugs. These medicines are injections that can break up your clot. They include drugs like tPA (tissue plasminogen activator).

Surgery. In some cases, your doctor may need to put a special filter into a vein, which can stop any future clots from getting to your lungs. Sometimes, people need surgery to remove a clot.

Even after you recover from a VTE and you’re out of the hospital, you’ll probably still need treatment with blood thinners for at least 3 months. That’s because your chances of having another VTE will be higher for a while.”

I’m still wondering how to avoid VTE. This is what The National Blood Clot Alliance at https://www.stoptheclot.org/learn_more/prevention_of_thrombosis/ suggested:

“Ask your doctor about need for ‘blood thinners’ or compression stockings to prevent clots, whenever you go to the hospital

Lose weight, if you are overweight

Stay active

Exercise regularly; walking is fine

Avoid long periods of staying still

Get up and move around at least every hour whenever you travel on a plane, train, or bus, particularly if the trip is longer than 4 hours

Do heel toe exercises or circle your feet if you cannot move around

Stop at least every two hours when you drive, and get out and move around

Drink a lot of water and wear loose fitted clothing when you travel

Talk to your doctor about your risk of clotting whenever you take hormones, whether for birth control or replacement therapy, or during and right after any pregnancy

Follow any self-care measures to keep heart failure, diabetes, or any other health issues as stable as possible”

And we have yet another reason to be extra cautious if you have CKD.

Until next week,

Keep living your life!

 

Keep It Where It Belongs 

You’ve all read about my cancer dance in one blog or another. Thank goodness, that’s over. But there are residual effects like hand and foot neuropathy, chemo brain (akin to CKD’s brain fog), and – to my great surprise – abdominal incisional hernia after surgery. How did that happen, I wondered.

Get ready for this: those with Chronic Kidney Disease have a 12.8% higher incidence of abdominal incisional hernia according to a PubMed 2013 study published on ResearchGate’s site available at https://bit.ly/3kdvxfl,

“Chronic kidney disease is associated with impaired wound healing and constitutes an independent risk factor for incisional hernia development.”

(The percentage of abdominal incisional hernia among CKD patients was taken from the cohort in this abstract.)

According to the same study:

“Elevated uremia toxins may inhibit granulation tissue formation and impair wound healing, thereby promoting incisional hernia development.”

As Chronic Kidney Disease patients, we know the accumulation of uremia toxins as uremia. On to my favorite dictionary, the Merriam-Webster at https://www.merriam-webster.com/dictionary/uremia for a definition of uremia:

“1: accumulation in the blood of constituents normally eliminated in the urine that produces a severe toxic condition and usually occurs in severe kidney disease

2: the toxic bodily condition associated with uremia”

It gets worse. First, you have to know that I am considered ‘elderly,’ another surprise.  According to The World Health Organization at https://bit.ly/32sQq05:

“Most developed world countries have accepted the chronological age of 65 years as a definition of ‘elderly’ or older person….”

I’m 73 and here’s why you needed this information that I am of advancing age.

“The risk factors for incisional hernia following abdominal surgery include (ranked by relative risk):

Emergency surgery

Emergency surgery carries double the risk of elective surgery.

Wound type

BMI >25

Obese patients are more likely to develop an incisional hernia

Midline incision

There is a 74% risk increase compared to non-midline

Wound infection

This increases incisional hernia risk by 68%.

Pre-operative chemotherapy

Intra-operative blood transfusion

Advancing age

Pregnancy

Other less common risk factors include chronic cough, diabetes mellitus, steroid therapy, smoking, and connective tissue disease.”

Thank you TeachMeSurgery at https://bit.ly/2GYrOUH for this risk factor information.

I have so many risks factors. Foremost for me, of course, is Chronic Kidney Disease as demonstrated earlier in this blog, but also advancing age. Oh no, we’ll have to add obesity since my oncologist just told me my BMI is higher than 25 and must be lowered in order to keep the possibility of cancer reoccurrence to a minimum.  Then there’s midline incision. My scar runs down the middle of my front from the breasts to below the belly button. Oh, and let’s not forget pre-operative chemotherapy. I had plenty of that. Then there’s intra-operative blood transfusion… to the tune of six for me. I almost forgot to include diabetes mellitus. Hmm, I do believe I had steroid therapy during my chemotherapy treatments, too.

Now what? The hernia is right there, visibly noticeable along the scar line and I understand all the possible reasons it’s there. We all know I have to do something about it, but why? Healthline at https://www.healthline.com/health/hernia#complications answers that question for us.

“Sometimes an untreated hernia can lead to potentially serious complications. Your hernia may grow and cause more symptoms. It may also put too much pressure on nearby tissues, which can cause swelling and pain in the surrounding area.

A portion of your intestine could also become trapped in the abdominal wall. This is called incarceration. Incarceration can obstruct your bowel and cause severe pain, nausea, or constipation.

If the trapped section of your intestines doesn’t get enough blood flow, strangulation occurs. This can cause the intestinal tissue to become infected or die. A strangulated hernia is life-threatening and requires immediate medical care.”

Uh-oh. What can I do? My oncologist suggested a wait and see approach with a twist. I’m now wearing something similar to the belly band that pregnant women wear. The differences are that this is worn around my body to cover the hernia and is very tight in an attempt to have the hernia heal itself. Will this work? That remains to be seen.

What if it doesn’t? Well, there’s always surgery. The National Center for Biotechnology Information (NCBI) at https://bit.ly/3hsFHae tells us,

“The treatment options for incisional hernias are open surgery or minimally invasive surgery. Minimally invasive surgery is also called ‘keyhole surgery,’ or ‘laparoscopic’ surgery if it is performed on the abdomen.”

Wait a minute, laparoscopic surgery. What’s that? Let’s go to MedlinePlus to see what we can find out. This explanation was at https://bit.ly/2RmkS5R.

“Laparoscopic surgery is a surgical technique in which short, narrow tubes (trochars) are inserted into the abdomen through small (less than one centimeter) incisions. Through these trochars, long, narrow instruments are inserted. The surgeon uses these instruments to manipulate, cut, and sew tissue.”

That does seem less invasive, but it’s still surgery. Let’s take a look at recovery time for laparoscopic surgery vs. open surgery. Open surgery is just what it sounds like: you’re cut open.

“When the surgeons are equally skilled and a procedure is available as both an open procedure and a minimally invasive one, the minimally invasive technique almost always offers a lower risk of infection, shorter recovery times and equally successful outcomes.”

Mind you, sometimes keyhole or laparoscopic surgery is not a choice since the surgeon needs to work on a larger area. For example, I had open cancer surgery since not only the tumor, but also my gall bladder and spleen, needed to be removed. Sometimes, what starts out as minimally invasive surgery becomes open surgery when the surgeons run into a problem or realize they need to work on a larger internal area than they’d originally thought.

I still find it amazing how connected all parts of our body are… like Chronic Kidney Disease adding to affecting a scar to the point that a hernia develops.

Until next week,

Keep living your life!

It Isn’t  Ain’t; It’s AIN.  

I’ll explain that in a minute, but first – on this Labor Day weekend – I want to thank all the readers who have liked individual blogs. These likes let me know I’m writing about topics that interest you.

Let’s turn to AIN now.  You know it’s not just a word, but an acronym. That’s a word formed by the initials of a term, like ASAP for as soon as possible. By the way, ‘nym’ means name, while ‘acr’ means height, summit, tip, top.  ‘O’ connects the two roots. So, we have the tip of the words or the first letters forming an acronym which becomes a recognized word. Thank you to my college course in Greek and Latin roots. I knew that would come on handy someday and it has again and again.

Well, what does AIN mean? It is the acronym for Allergic Interstitial Nephritis, which is a mouthful itself. ‘Allergic’ we get. That’s a common enough word. ‘Interstitial’, though? I remember the prefix (group of related words before the root word that changes its meaning) ‘inter’ means between, but between what? Merriam-Webster Dictionary at https://bit.ly/3h3cF0H, here we come.

asituated within but not restricted to or characteristic of a particular organ or tissue —used especially of fibrous tissue

 baffecting the interstitial tissues of an organ or part

I wonder if we’ll need both definitions. I think we need to be reminded of what nephritis is before we can tell. Again, I remember from that college course so very long ago (Funny what sticks in your mind, isn’t it?) that ‘itis’ means inflammation. We know from all the writings about Chronic Kidney Disease that ‘neph’ means kidneys. Putting these together, we have inflammation of the kidneys. Let’s take a look at my favorite dictionary again, just to be certain.

Yep, there we have it at www.merriam-webster/dictionary/nephritis:

“acute or chronic inflammation of the kidney caused by infection, degenerative process, or vascular disease”

How do you define the whole term? According the excerpt from Nancy A. Finnigan and Khalid Bashir’s book Statpearls on NCBI’s bookshelf at https://bit.ly/31ZTeS2,

“Allergic interstitial nephritis (AIN) is the most common form of acute interstitial nephritis. It is most often caused by exposure to a drug. AIN is often associated with an acute decline in renal function and may be associated with permanent renal insufficiency.”

Acute? Oh, yes. That’s means sudden. It’s the opposite of chronic, which means long term. Looks like we only needed the second dictionary definition of interstitial after all.

So, this kind of nephritis is usually caused by drugs? Which drugs? I went to UpToDate at https://bit.ly/3i4exHS for the answer:

“The most common drug causes of AIN now include …:

  • Nonsteroidalanti-inflammatoryagents (NSAIDs), including selective cyclooxygenase (COX)-2 inhibitors
  • Penicillinsand cephalosporins
  • Rifampin
  • Antimicrobial sulfonamides, including trimethoprim-sulfamethoxazole
  • Ciprofloxacin and,perhaps toa lesser degree, other quinolones
  • Diuretics, including loop diuretics such as furosemide and bumetanide, and thiazide-type diuretics
  • Cimetidine (only rare cases have been described with other H-2 blockers such as ranitidine) [24,25]
  • Allopurinol
  • Proton pump inhibitors (PPIs) such as omeprazole and lansoprazole [26-29]
  • Indinavir
  • 5-aminosalicylates (eg, mesalamine)”

There are some very common drugs on this list. As Chronic Kidney Disease patients, we are warned away from NSAIDS. I’ve been warned about Ciprofloxacin, too, and PPIs, but diuretics? Most of the other drugs we’d have to ask our doctors about when and if they’re prescribed. Then again, I ask my family doctor to check the effect of the drug on the kidneys when she prescribes a drug. She happily does so.

You should note that many of these drugs do not require a prescription. In that case, speak with your pharmacist about its possible effect on your kidneys before buying any over the counter drug. Another possibility is using Drugs.com or a similar website for possible effects on your kidneys before using any drugs.

What are the symptoms, if any, of AIN? Well, much like Chronic Kidney Disease, there are often no symptoms until it is quite advanced. Then you would notice the acute drop in kidney function. A blood test and urine test will help with the diagnosis, although the urine test will only show the presence of white blood cells. That indicates an infection. Sometimes a kidney biopsy is required to diagnose AIN.

And now the biggie: what do you do if you develop AIN? You stop the medication. It’s common sense. Your doctor will probably suggest that once it’s been determined you have allergic interstitial nephritis. Remember though, there are other causes of AIN such as infections and/or autoimmunity.

Topic switch: While I’ve been laboring over this blog, I’ve also been thinking about the fact that today is Labor Day in the United States. Coming from a union family, I thought I’d tell you a little bit about Labor Day that you may not know.

This, and more information about Labor Day, may be found at https://bit.ly/3jPeaRR

“In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories.

The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It [sic]was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.”

As many of you already know, my grandfather was an organizer for the Brass Workers Union. Many a time he’d disappear. He was jailed for his activities, but that didn’t stop him.

As you labor to avoid AIN and keep your kidneys functioning properly, enjoy the holiday weekend.

Until next week,

Keep living your life!

The Dye is Cast

Bet you think I made a spelling error in the title. If you’re thinking of the original phrase, you’re right. In that one, it’s spelled ‘die’. Here’s where it came from according to Wikipedia at https://en.wikipedia.org/wiki/Alea_iacta_est:

Alea iacta est (‘The die has been cast’) is a variation of a Latin phrase (iacta alea est [ˈjakta ˈaːlɛ.a ˈɛst]) attributed by Suetonius to Julius Caesar on January 10, 49 BCE, as he led his army across the Rubicon river in Northern Italy…. The phrase, either in the original Latin or in translation, is used in many languages to indicate that events have passed a point of no return. It is now most commonly cited with the word order changed (‘Alea iacta est’) rather than in the original phrasing….”

Uh-oh, there is in existence a phrase just like the title of today’s blog. It means the tint has been applied and can’t be changed or something like that.That this phrase with this spelling exists was a bit surprising. What I meant in the title is the dye used in contrast CTs.

Let’s back up just a bit so we can explain what a CT is. The Mayo Clinic at https://mayocl.in/3jujqdk tells us:

A computerized tomography (CT) scan combines a series of X-ray images taken from different angles around your body and uses computer processing to create cross-sectional images (slices) of the bones, blood vessels and soft tissues inside your body. CT scan images provide more-detailed information than plain X-rays do.”

I’ll be having one with contrast this afternoon. You know we, as CKD patients, have been warned not to allow that contrast into our bodies. Let’s find out why and then I’ll tell you why I am allowing it. The contrast is the dye in the title of today’s blog.

“In a CT scan, dense substances like bones are easy to see. But soft tissues don’t show up as well. They may look faint in the image. To help them appear clearly, you may need a special dye called a contrast material. They block the X-rays and appear white on the scan, highlighting blood vessels, organs, or other structures.Contrast materials are usually made of iodine or barium sulfate. You might receive these drugs in one or more of three ways:

  • Injection: The drugs are injected directly into a vein. This is done to help your blood vessels, urinary tract, liver, or gallbladder stand out in the image.
  • Orally: Drinking a liquid with the contrast material can enhance scans of your digestive tract, the pathway of food through your body.
  • Enema: If your intestines are being scanned, the contrast material can be inserted in your rectum.

After the CT scan, you’ll need to drink plenty of fluids to help your kidneys remove the contrast material from your body.”Thank you, WebMD at https://www.webmd.com/cancer/what-is-a-ct-scan#2 for the above information.

Of course, now we need to know why we shouldn’t be having this contrast material. Radiology Affiliates Imagining at https://4rai.com/blog/can-contrast-hurt-my-kidneys, a new site for me but one that seems very thorough, explains that we just don’t know for sure:

“…. Unhealthy kidneys, though, may be slower and less efficient when it comes to clearing the contrast from the blood. While the medical community has not yet determined exactly how contrast dye causes kidney problems, they think it has to do with this slow clearance of the dyes from the body.”

Well, what problems can contrast dye cause for our kidneys? I went right to the National Kidney Foundation at https://bit.ly/2YL7RXv  for an answer to this question

“What is Contrast Induced Nephropathy (CIN)?

CIN is a rare disorder and occurs when kidney problems are caused by the use of certain contrast dyes. In most cases contrast dyes used in tests, such as CT (computerized tomography) and angiograms, have no reported problems. About 2 percent of people receiving dyes can develop CIN. However, the risk for CIN can increase for people with diabetes, a history of heart and blood diseases, and chronic kidney disease (CKD)….The risk of CIN in people with both CKD and diabetes is 20 to 50 percent.

CIN is associated with a sharp decrease in kidney function over a period of 48-72 hours. The symptoms can be similar to those of kidney disease, which include feeling more tired, poor appetite, swelling in the feet and ankles, puffiness around the eyes, or dry and itchy skin. In many cases, CIN is reversible and people can recover. However, in some cases, CIN can lead to more serious kidney problems and possible heart and blood vessel problems

What is Nephrogenic Systemic Fibrosis (NSF)?

NSF is a rare but serious disease affecting skin and other organs that has been found in some patients with advanced CKD after exposure to gadolinium-containing contrast dyes that are used in magnetic resonance imaging (MRI). NSF appears to affect about 4 percent of patients with advanced CKD. People with acute kidney injury (AKI) are also at higher risk. NSF has not been reported in people with mild kidney damage or normal kidney function.

NSF can be painful, debilitating, or even fatal. Symptoms and signs of NSF can include burning and itching of the skin, red or dark patches on the skin, joint stiffness, or muscle weakness. The disease can develop within 24 hours up to around 3 months….  delay in excretion [of this drug] is thought to be one the main reasons why NSF may happen.”

Notice that both possible effects of using contrast dye with kidney disease are rare.

So why am I having the contrast dye when I’ve been advised not to? My oncology team needs to see if the cancer has returned and, if it has, how badly. I told them at the beginning of my treatment to spare my kidneys as much as possible. But, in this case, I don’t want them to spare my kidneys so much that I end up dead of cancer.

There are two kinds of dye used, one less harmful to the kidneys than the other. I believe that’s the one that is used on me. It is also reduced in order to save me from any possible further kidney damage. Most importantly, my creatinine level is measured before administering the contrast dye. After a year and a half of this, my kidneys are doing just as well as they were doing before I started allowing contrast dye.

This is my story; remember, everyone is different and talk this over with your nephrologist before you agree to contrast dye. My nephrologist and I agreed that I needed to be alive more than I needed to save my kidneys.

Until next week,

Keep living your life!

Not Your New Age Crystals 

I was perusing the Facebook Chronic Kidney Disease online support groups as I usually do in the morning when I ran across a post that caught my eye. The person posting wanted to know if he were going to die because he had crystals in his urine. I’d never thought about that before. He sounded really scared, so I decided to take a look at this condition.

First of all, some basic information from Study.com at https://bit.ly/34n3W6H:

“Crystals in the urine is known as crystalluria. Sometimes crystals are found in healthy people and other times they are indicators of organ dysfunction, the presence of urinary tract stones of a like composition (known as urolithiasis), or an infection in the urinary tract.”

Ummm, I wanted a bit more information so I turned to Healthline.com at https://www.healthline.com/health/urine-crystals.

“Crystals can be found in the urine of healthy individuals. They may be caused by minor issues like a slight excess of protein or vitamin C. Many types of urine crystals are relatively harmless.

In some cases, however, urine crystals can be indicators of a more serious underlying condition. Symptoms that would indicate a more serious condition could include:

  • fever
  • severe abdominal pain
  • blood in the urine
  • jaundice
  • Fatigue”

Serious conditions? What does that mean? The organ dysfunction Study.com mentioned? Which organs? Urolithiasis? An infection? Can you die from any of these?

Time to slow down. Since this is a Chronic Kidney Disease blog, let’s start with the kidneys.

“Crystal-induced acute kidney injury (AKI) is caused by the intratubular precipitation of crystals, which results in obstruction. Crystal-induced AKI most commonly occurs as a result of acute uric acid nephropathy and following the administration of drugs or toxins that are poorly soluble or have metabolites that are poorly soluble in urine …. Other drugs or medications may be metabolized to insoluble products such as oxalate (ethylene glycol, vitamin C), which are associated with precipitation of calcium oxalate crystals within tubular lumens and kidney injury.”

Thank you UptoDate.com at https://bit.ly/3j3BT0k for this information, although we’ll need some explanation in order to understand it. I get it that crystals can produce obstruction in the tubules (Wikipedia: The renal tubule is the portion of the nephron containing the tubular fluid filtered through the glomerulus), rather than being passed out of the body in the urine. It makes sense that if the crystals do produce obstruction, the urine may back up… right into the kidneys. That’s when you have the AKI. Remember, this in not chronic. The condition remains until it’s remedied, but it can be remedied.

What about urolithiasis? I must thank the National Kidney Foundation at https://www.kidney.org/atoz/content/hydronephrosis for their easily understood information about a condition called hydronephrosis which will explain how both urolithiasis and/or an infection would affect your kidneys.

“Hydronephrosis is the swelling of a kidney due to a build-up of urine. It happens when urine cannot drain out from the kidney to the bladder from a blockage or obstruction. (Gail here: such as the blockage caused by crystals which results in AKI.) Hydronephrosis can occur in one or both kidneys.

The main function of the urinary tract is to remove wastes and fluid from the body. The urinary tract has four parts: the kidneys, the ureters, the bladder and urethra. The urine is formed when the kidneys filter blood and remove excess waste materials and fluid. Urine collects into a part of the kidney called the renal pelvis. From the renal pelvis, the urine travels down a narrow tube called the ureter into the bladder. The bladder slowly fills up with urine, which empties from the body through another small tube called the urethra. Hydronephrosis occurs when there is either a blockage of the outflow of urine, or reverse flow of urine already in the bladder (called reflux) that can cause the renal pelvis to become enlarged.

Hydronephrosis may or may not cause symptoms. The main symptom is pain, either in the side and back (known as flank pain), abdomen or groin. Other symptoms can include pain during urination, other problems with urination (increased urge or frequency, incomplete urination, incontinence), nausea and fever. These symptoms depend on the cause and severity of urinary blockage.

How is Hydronephrosis Caused?
Hydronephrosis is usually caused by another underlying illness or risk factor. Causes of hydronephrosis include, but are not limited to, the following illnesses or risk factors:

  • Kidney stone
  • Congenital blockage (a defect that is present at birth)
  • Blood clot
  • Scarring of tissue (from injury or previous surgery)
  • Tumor or cancer (examples include bladder, cervical, colon, or prostate)
  • Enlarged prostate (noncancerous)
  • Pregnancy
  • Urinary tract infection (or other diseases that cause inflammation of the urinary tract)”

Kidney stones? MedicalNewsToday at https://www.medicalnewstoday.com/articles/154193 helped us out with that one:

“Kidney stones are the result of a buildup of dissolved minerals on the inner lining of the kidneys.

They usually consist of calcium oxalate but may be composed of several other compounds.

Kidney stones can grow to the size of a golf ball while maintaining a sharp, crystalline structure.

The stones may be small and pass unnoticed through the urinary tract, but they can also cause extreme pain as they leave the body.”

There is quite a bit more information about kidneys stones at this site. What we needed to know is that, again, it’s a buildup – as in not passed from the body via the urine – that causes kidney stones.

Will the person who posted the comment about crystals in his urine die, whether or not he develops symptoms? It seems to me that’s not necessary IF he seeks treatment and follows medical advice.

Back to Healthline, but this time at https://www.healthline.com/health/urine-crystals#prevention, for their take on this question:

“Urine crystals that aren’t caused by underlying conditions like liver disease or genetic conditions can often be prevented. In some cases, even crystalluria triggered by genetic causes can be reduced with lifestyle or diet changes.

The most effective way to prevent urine crystals is to drink more water and stay hydrated. This helps dilute the chemical concentrations in the urine, preventing crystals from forming.

You can also make certain changes in your diet. Your doctor can help you determine what changes to make based on the type of crystals that you have. They may recommend cutting back on protein, for example, or reducing foods high in oxalate (as is the case for calcium oxalate crystals).

Avoiding salty foods can also help prevent a number of different urine crystals, so eliminating processed foods can be beneficial.”

I’m going to add today’s blog to the things-I-never-knew part of my brain.

Until next week,

Keep living your life!

I’ve Been Compromised 

It’s true, and it’s not only me. It’s you, too, if you have Chronic Kidney Disease. ‘What do I mean?’ you ask. It’s your immune system that’s been compromised by your CKD. ‘HOW?’ you demand. That’s what today’s blog is going to explain.

Let’s start the usual way: at the beginning. So, what’s this immune system I mentioned? I turned to Medline Plus, a part of the U.S. National Library of Medicine which, in turn, is a division of the National Institutes of Health at https://medlineplus.gov/immunesystemanddisorders.html

“Your immune system is a complex network of cells, tissues, and organs that work together to defend against germs. It helps your body to recognize these ‘foreign’ invaders. Then its job is to keep them out, or if it can’t, to find and destroy them.”

According to the National Kidney Foundation at https://www.kidney.org/atoz/chronic-kidney-disease-and-pneumococcal-disease-do-you-know-facts,

“…Having kidney disease and kidney failure can weaken your immune system, making it easier for infections to take hold.  In fact, doctors and researchers have found that most infections, …, are worse in people with kidney disease.  People with a kidney transplant also have weakened immune systems.  This is because antirejection medicines (‘immunosuppressants’), which protect the body from rejecting the transplanted kidney, suppress the immune system.”

That makes sense. But exactly how does CKD compromise this system?

According to a British Society for Immunology study published in PubMed [“PubMed Central (PMC) is a free archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM),” as stated on their website. NCBI is The National Center for Biotechnology Information.] at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5904695/:

“The immune system and the kidneys are closely linked. In health the kidneys contribute to immune homeostasis, while components of the immune system mediate many acute forms of renal disease and play a central role in progression of chronic kidney disease. A dysregulated immune system can have either direct or indirect renal effects. Direct immune‐mediated kidney diseases are usually a consequence of autoantibodies directed against a constituent renal antigen, …. Indirect immune‐mediated renal disease often follows systemic autoimmunity with immune complex formation, but can also be due to uncontrolled activation of the complement pathways. Although the range of mechanisms of immune dysregulation leading to renal disease is broad, the pathways leading to injury are similar. Loss of immune homeostasis in renal disease results in perpetual immune cell recruitment and worsening damage to the kidney. Uncoordinated attempts at tissue repair, after immune‐mediated disease or non‐immune mediated injury, result in fibrosis of structures important for renal function, leading eventually to kidney failure.”

Hmmm, it seems my linking function is not working for this URL. No loss, just copy and paste the URL if you’d like to read more about the immune system and the kidneys.

There are a few medical terms in the above paragraph that you may need defined. Thank you, my all-time favorite dictionary, the Merriam-Webster, for helping us out here.

Antibodyany of a large number of proteins of high molecular weight that are produced normally by specialized B cells after stimulation by an antigen and act specifically against the antigen in an immune response, that are produced abnormally by some cancer cells, and that typically consist of four subunits including two heavy chains and two light chains

(https://www.merriam-webster.com/dictionary/antibody)

Antigenany substance (such as an immunogen or a hapten [Gail here: Bing defines this as “a small molecule which, when combined with a larger carrier such as a protein, can elicit the production of antibodies which bind specifically to it (in the free or combined state.]) foreign to the body that evokes an immune response either alone or after forming a complex with a larger molecule (such as a protein) and that is capable of binding with a product (such as an antibody or T cell) of the immune response

(https://www.merriam-webster.com/dictionary/antigen)

Autoantibodiesan antibody active against a tissue constituent of the individual producing it

(https://www.merriam-webster.com/dictionary/autoantibodies)

Fibrosisa condition marked by increase of interstitial fibrous tissue [Gail here: That’s not much help. In a word, fibrosis means scarring.]

(https://www.merriam-webster.com/dictionary/fibrosis)

Renal: of, relating to, involving, or located in the region of the kidneys

(https://www.merriam-webster.com/dictionary/renal)

Oh, boy. Now what? Can we build up our immune system? WebMD’s slide show  at https://www.webmd.com/diet/ss/slideshow-strengthen-immunity offers some ways we can. To summarize this slide show:

  1. Avoid stress.
  2. Have sex more often (I love this one.)
  3. Get a pet.
  4. Be optimistic.
  5. Build your social network
  6. Laugh more.
  7. Eat colorful fruits and vegetables. (Within your kidney diet, of course.)
  8. Consider herbs and supplements. (Check with your nephrologist first.)
  9. Exercise.
  10. Sleep an adequate number of hours.
  11. Cut back on alcohol consumption.
  12. Stop smoking.
  13. Keep washing those hands.

Some doctors, such as  Dr. Suzanne Cassel, an immunologist at Cedars-Sinai, think we need to balance our immune systems rather than strengthen them. ” ‘You actually don’t want your immune system to be stronger, you want it to be balanced,’ Dr. Cassel says. ‘Too much of an immune response is just as bad as too little response.’

Dr. Cassel says most of the things people take to boost their immune system, such as vitamins or supplements, don’t have any effect on your immune response.”

Obviously, all doctors don’t agree. Whether you want to balance your immune system or strengthen it, the suggestions above will be helpful. Notice whether or not we’re in the middle of a pandemic, washing your hands frequently can help your immune system. Most of the suggestions from WebMD may be surprising to you since they are lifestyle changes and/or are the same ones suggested in general for CKD patients. There’s got to be something to them if they can both help with your CKD and your immune system. Why not try the suggestions you’re not already adhering to?

By the way, to the reader who asked why chocolate is not good for CKD patients, it’s loaded with potassium. In addition, many CKD patients also have diabetes. The sugar content in chocolate is not going to do them any good.

Until next week,

Keep living your life!

Getting Ready  

As I mentioned last week, I am lucky enough to be cancer free now and have returned to my other specialists. But we are experiencing the Covid-19 pandemic which means most of my doctors are conducting telemedicine appointments.

What are those? Let’s go to my favorite dictionary, The Merriam-Webster Dictionary, and see what we can see. I found this at https://www.merriam-webster.com/dictionary/telemedicine:

“the practice of medicine when the doctor and patient are widely separated using two-way voice and visual communication (as by satellite or computer)”

Surprisingly, I also discovered this has been in use since 1968. Maybe that’s why the phone and/or iPad type devices weren’t mentioned in the definition.

Of course, if you need to be examined physically, you’ll have to go to the doctor’s office. For example, poor Bear needed several mole biopsies last week. Obviously, he had to present himself at his dermatologist’s office to have these procedures carried out.

But I’ve been fortunate to be able to stick with telemedicine. Yet, you’ve got to be prepared for such doctor appointments. Do you have a thermometer? You’ll be asked for your temperature. We use both the DTT (digital temple thermometer) and Target’s talking thermometer (for those days when neither of us can find our glasses… really.) It seems the DTT we use is no longer manufactured, but the updated one is only about $15.00. The talking ear digital thermometer is more expensive. That one runs about double the price of the DTT. I did discover that digital mouth thermometers can be as low as $8.00. Non-digital oral thermometers start at about $6.00 You can compare prices online for the best deal. However, we are apparently old fashioned. The newest form of temperature assessment is the no contact digital scan thermometer. This one starts at about $50.

So, you have your temperature reading ready. What else will you need? I’ve always been asked for my blood pressure and pulse. I use an arm, rather than a wrist, device since my family doctor explained to me that the wrist device takes a reading through two bones. Those are the radius and ulna. The arm device takes your reading through only one bone, the humerus. She feels a reading through only one bone is more accurate. What device do I use? No matter which ones I’ve experimented with, I always return to Omron. It’s easy to use and accurate. These run from about $33 to over $100, depending upon how fancy you want to go. This description is from Amazon’s mid-price Omron:

Platinum (new version)

  • Trusted brand – Omron is the #1 recommended home blood pressure monitor brand by doctors and pharmacists for clinically-accurate home monitoring, and the #1 selling manufacturer of home blood pressure monitors for over 40 years.
  • Unlimited memory and users with the free app – The Omron gold wrist monitor stores 200 total blood pressure readings for 2 users (100 per user, most of any Omron wrist blood pressure monitor). Memory and users are unlimited with the Omron connect free app which works with amazon alexa-enabled devices (on select IOS & android devices).
  • High morning average indicator – Among Omron Amazon-exclusive blood pressure monitors, this feature is unique to the Gold and Platinum monitors. The indicator alerts the user if systolic or diastolic measurements are out of normal range in the morning, when there is a higher risk for heart attack or stroke.
  • Dual display with backlight – The Omron Platinum monitor features a backlit dual-display LCD monitor with easy navigation that allows the user to immediately compare the current reading to the previous reading. The backlight feature is only available with the Platinum Monitor.
  • AC adapter included – The Omron Ac Adapter eliminates the worry of changing batteries in your Omron Blood Pressure Monitor. The convenient AC adapter helps make sure your monitor is ready whenever you are.”

What else now? Let me think for a minute. Of course, if you are prediabetic or diabetic, you’ll be asked for your latest blood sugar readings. Believe it or not, I prefer WalMart’s no nonsense, no frills ReliOn Prime blood glucose monitor. In case you didn’t know, WalMart also operates as Sam’s Club. For my non-U.S.A. readers, according to https://en.wikipedia.org/wiki/Walmart, Walmart International operates in these countries:

Let’s keep in mind that anyone can edit in Wikipedia, so be certain to check before you bank upon going.

My family doctor did prescribe another brand which is a bit fancier in that it has a nicer looking case, lancet ejector, and meter. It was also more expensive and a prescription was needed.

If this is all new to you, you need to know you not only need this kit (which contains the monitor, a lancing device for your lancets, and spaces to store both your test strips and needles), but also the afore mentioned test strips and lancing device. You can buy 100 ultra-thin lancets for under $3.00. I suggest ultra-thin because I’ve found the thinner the lancet, the less the poke to get that one drop of blood needed for testing hurts.

The test strips are another story. These are expensive. They usually cost a little less than $18.00 for 100. And the lancing device? That’s about $6.00. The monitor itself is $9.00. The case comes with your starter kit. I haven’t found one sold separately by Walmart, although Amazon has a few for other brands. The number of times you need to test your blood glucose daily determines the weekly cost of your supplies.

You’ll also be asked for your height and weight. I have to admit I’m partial to digital devices and so have a digital scale from Amazon. Their scales run from $18.00 to $35.00. Of course, non-digital will be less expensive.

As for the height, I guess I cheated. I looked up the most recent height recorded on my last doctor’s appointment and used that.

Conclusion: You’ll need your temperature, blood pressure, height, weight, – if you’re prediabetic or diabetic – your blood glucose, and a phone, iPad sort of device, or computer for your telemedicine appointment.  Now you’re ready.

May you only have good results.

Until next week,

Keep living your life!

I Can’t Eat That 

Now that I’m cancer free, I’ve resumed visits to all the other specialists (Isn’t growing older wonderful?) I had been seeing before the cancer diagnosis. One of these specialists was my immunologist, who had suggested I stop taking my allergy injections while I was doing chemotherapy since the chemo would change many of the conditions in my body. She was right. I no longer need the monthly injections for seasonal allergies, but there are certain foods I can no longer eat.

Why not, you may be asking yourself. Easy answer? I’m allergic to them. Wait just a minute here. What exactly does allergic mean and how will this affect your Chronic Kidney Disease?

The Merriam-Webster dictionary at https://www.merriam-webster.com/dictionary/allergy tells us that allergy means,

“1altered bodily reactivity (such as hypersensitivity) to an antigen in response to a first exposure….

2exaggerated or pathological immunological reaction (as by sneezing, difficult breathing, itching, or skin rashes) to substances, situations, or physical states that are without comparable effect on the average individual

3medical practice concerned with allergies

4a feeling of antipathy or aversion”

It’s definition number two for us. Maybe an explanation of those monthly allergy injections would be helpful here, too. The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/allergy-shots/about/pac-20392876#:~:text=If%20you%20get%20weekly%20or,reaction%2C%20particularly%20a%20local%20reaction had the explanation we needed:

“Allergy shots are regular injections over a period of time — generally around three to five years — to stop or reduce allergy attacks. Allergy shots are a form of treatment called immunotherapy. [Gail here: Hence, the specialist who treats allergies is called an immunologist.] Each allergy shot contains a tiny amount of the specific substance or substances that trigger your allergic reactions. These are called allergens. Allergy shots contain just enough allergens to stimulate your immune system — but not enough to cause a full-blown allergic reaction.

Over time, your doctor increases the dose of allergens in each of your allergy shots. This helps get your body used to the allergens (desensitization). Your immune system builds up a tolerance to the allergens, causing your allergy symptoms to diminish over time.”

Lucky me: no more seasonal allergies. Let’s get back to those food allergies and CKD now… or not. While I found quite a bit of information about drug allergies, I found very little about food allergies. It’s nice to know my allergies to shellfish and vanilla will not harm my kidneys. Come to think of it, I don’t eat these foods because I’m allergic to them, so they’re not in my system anyway.

Hmmm, is it any different with food sensitivities? How’s about a definition first. It’s so nice to have a favorite dictionary. This is what The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/sensitivity?utm_campaign=sd&utm_medium=serp&utm_source=jsonld has to say:

“the quality or state of being sensitive: such as

athe capacity of an organism or sense organ to respond to stimulation: IRRITABILITY

bthe quality or state of being hypersensitive

cthe degree to which a radio receiving set responds to incoming waves

dthe capacity of being easily hurt

eawareness of the needs and emotions of others”

Definition a is the one we need.

Again, I did not find enough validation that food sensitivities could damage our kidneys to write about it.

Maybe I’m looking at this backwards. Maybe it’s not do food sensitivities and allergies damage our kidneys that I should be dealing with, but rather can they cause kidney damage. Back to the internet. Will you look at that? Again, there was much more information about drug allergies damaging your kidneys and very little about food allergies or sensitivities.

I’ve satisfied myself that, just as with my food allergies, my sensitivity to lactose, wheat, fructose syrup, and acidic foods will not harm my kidneys. Although, they may cause me to read more food labels than I usually do. Hopefully, you’re satisfied that your food allergies and sensitivities will not harm your kidneys. If you’re still concerned, speak with your nephrologist or renal dietitian.

Of course, none of this means we can ignore the kidney diet. That is, not if you want to slow down the progression of the decline of your kidney function. Eat according to your labs. Keep watching your potassium, phosphorous, protein, and sodium restrictions. This is highly individualized, so again: speak with your nephrologist or renal dietitian should you have questions.

While we’re on the subject of food, do you remember when I wrote about Flavis? That’s the low sodium, low phosphorus, low potassium food company. Bear made a beef stew which we decided to eat upon a layer of pasta. We chose Flavis’s fusilli. That’s a kind of short, spiral pasta. I have got to say it was delicious. I like that it tastes so light, especially since I usually find pasta so heavy.   

News! I’ve gotten so many emails asking where readers can buy my books that I’ve made each title clickable. Click on the title and you go directly to the book’s page on Amazon.com. The titles are to the right of the blog itself on the blog roll.

I know, especially now in the time of Covid-19, that money can be an issue and even the $2.99 for the digital version of each of the books can be $2.99 too much. In that case, I suggest you request your library order the book and then you can borrow it for free. Even libraries that have shut down have virtual sites now. I do humbly request reviews from those of you who read the books. You can leave them on the Amazon.com page for each book. Thank you in advance.

Until next week,

Keep living your life!

Balloon sans Cake or Ice Cream

I am at Stage 3A, which is still pretty far from dialysis or End Stage Kidney Disease (ESRD) which is usually Stage 5. Chronic Kidney Disease (CKD) is staged by your Glomerular Filtration Rate (GFR). This graphic will make it clear.

I don’t know very much about dialysis. However, I have heard of a fistula. I went to MedlinePlus, which is subdivision of the U.S. National Library of Medicine which, in turn, is a subdivision of the National Institutes of Health at https://medlineplus.gov/ency/article/002365.htm for a formal definition of fistula.

“A fistula is an abnormal connection between two body parts, such as an organ or blood vessel and another structure. Fistulas are usually the result of an injury or surgery. Infection or inflammation can also cause a fistula to form.

Information

Fistulas may occur in many parts of the body. They can form between:

  • An artery and vein
  • Bile ducts and the surface of the skin (from gallbladder surgery)
  • The cervix and vagina
  • The neck and throat
  • The space inside the skull and nasal sinus
  • The bowel and vagina
  • The colon and surface of the body, causing feces to exit through an opening other than the anus
  • The stomach and surface of the skin
  • The uterus and peritoneal cavity (the space between the walls of the abdomen and internal organs)
  • An artery and vein in the lungs (results in blood not picking up enough oxygen in the lungs)
  • The navel and gut”

Now, look again at the first words in the list above: “an artery and vein.” That’s the way fistulas for dialysis are formed. But how?

“A vascular access is a hemodialysis patient’s lifeline, because it makes life-saving hemodialysis treatments possible. Hemodialysis is a treatment for kidney failure that uses a machine to send the patient’s blood through a filter, called a dialyzer, outside the body. The access is a surgically created vein used to remove and return blood during hemodialysis. The blood goes through a needle, a few ounces at a time. The blood then travels through a tube that takes it to the dialyzer. Inside the dialyzer, the blood flows through thin fibers that filter out wastes and extra fluid. The machine returns the filtered blood to the body through a different tube. A vascular access lets large amounts of blood flow continuously during hemodialysis treatments to filter as much blood as possible per treatment. About a pint of blood flows through the machine every minute. A vascular access should be in place weeks or months before the first hemodialysis treatment.”

Thank you to the University of California, San Francisco, Department of Surgery at https://surgery.ucsf.edu/conditions–procedures/vascular-access-for-hemodialysis.aspx for even more useful information than I’d sought.

But now we need to know what hemodialysis is. The National Kidney Foundation at https://www.kidney.org/atoz/content/hemodialysis was a fount of knowledge for us (as it always is):

“When is dialysis needed?

You need dialysis if your kidneys no longer remove enough wastes and fluid from your blood to keep you healthy. This usually happens when you have only 10 to 15 percent of your kidney function left. [Gail here: that’s stage 5 or ESRD.] You may have symptoms such as nausea, vomiting, swelling and fatigue. However, even if you don’t have these symptoms yet, you can still have a high level of wastes in your blood that may be toxic to your body. Your doctor is the best person to tell you when you should start dialysis.

How does hemodialysis work?

Hemodialysis is a procedure where a dialysis machine and a special filter called an artificial kidney, or a dialyzer, are used to clean your blood. To get your blood into the dialyzer, the doctor needs to make an access, or entrance, into your blood vessels. This is done with minor surgery, usually to your arm. ….

How does the dialyzer clean my blood?

The dialyzer, or filter, has two parts, one for your blood and one for a washing fluid called dialysate. A thin membrane separates these two parts. Blood cells, protein and other important things remain in your blood because they are too big to pass through the membrane. Smaller waste products in the blood, such as urea, creatinine, potassium and extra fluid pass through the membrane and are washed away.”

By the way, hemodialysis is not the only kind of dialysis.

Got it? So what’s this about balloon? By this point, you’ve realized it’s not the kind you see at birthday parties as you see cake and ice cream. Someone I know is having this procedure. While talking it over, we realized neither of us knew how it was done or, on some levels, why it was even done. I decided we could both learn about it if I wrote about ballooning.

Well, will you look at that? Ballooning is really angioplasty. The Encarta Dictionary defines angioplasty as,

“a surgical operation to clear a narrowed or blocked artery”

That makes sense since a fistula connects an artery and a vein.

Let’s find out why how it’s done. I found a good explanation from Azura Vascular Care at https://www.azuravascularcare.com/infodialysisaccess/angioplasty-can-help-with-dialysis-access-complications/.

“An angioplasty is a way to fix a blood vessel that has become narrow.

  • If you need an angioplasty, an inflatable balloon will be inserted through the catheter.
  • The balloon is inflated where the narrowing is.
  • You may feel some discomfort when the balloon is inflated.
  • The angioplasty usually takes about 1 hour.
  • One stitch may be placed at the insertion site.
  • The stitch can be taken out the following morning or at your next dialysis treatment.”

Apparently, your artery can be too narrow before you start dialysis. Notice, the person I was speaking with has a fistula, not a catheter. The procedure is the same, except that the balloon is inserted via the fistula.

Well, what about after the angioplasty? This is from the Texas Heart Institute at https://www.texasheart.org/heart-health/heart-information-center/topics/vascular-access-for-hemodialysis/:

“Patients should avoid heavy lifting. Any injury to your arm can cause bleeding. When you go to the doctor, do not let anyone take your blood pressure, start an IV, or take blood from the arm with the A-V fistula or graft.”

Now I know, and so does the person I was speaking with… and so do you.

Until next week,

Keep living your life!

We Know They Do, But How?

  • “aluminum- and calcium-containing antacids
  • anticonvulsants
  • calcium channel blockers
  • diuretics
  • iron supplements
  • narcotic pain medications
  • medicines used to treat Parkinson’s disease”

I ask you what do these drugs have in common. Healthline at https://www.healthline.com/health/what-does-constipation-feel-like#takeaway tells us they all may cause constipation.

This is one of those topics we don’t like to talk about, but have probably each experienced at one time or another. There are other causes of constipation, but today, we’ll stick with that caused by drugs. Mind you, we’re not talking about party drugs. Rather, it’s the drugs that are prescribed for you that may cause constipation which I’m writing about.

Well, how do you know if you have constipation? The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253 explains:

  • “Passing fewer than three stools a week
  • Having lumpy or hard stools
  • Straining to have bowel movements
  • Feeling as though there’s a blockage in your rectum that prevents bowel movements
  • Feeling as though you can’t completely empty the stool from your rectum
  • Needing help to empty your rectum, such as using your hands to press on your abdomen and using a finger to remove stool from your rectum”

According to the International Foundation of Gastrointestinal Disorders at https://www.iffgd.org/diet-treatments/medications/medications-that-can-affect-colonic-function.html,

“Constipation can be caused by a variety of medications. These medications affect the nerve and muscle activity in the large intestine (colon) and may also bind intestinal liquid. This may result in slowed colonic action (slow and/or difficult passing of stool).”

Let’s see if we can get more specific information on how constipation works. I went to Medscape at https://emedicine.medscape.com/article/184704-overview#a4 and discovered there are quite a few different kinds of constipation:

“The etiology [Gail here. That means the cause of the disease.] of constipation is usually multifactorial, but it can be broadly divided into two main groups …: primary constipation and secondary constipation.

Primary constipation

Primary (idiopathic, functional) constipation can generally be subdivided into the following three types:

Normal-transit constipation (NTC)

Slow-transit constipation (STC)

Pelvic floor dysfunction (ie, pelvic floor dyssynergia)

NTC is the most common subtype of primary constipation. Although the stool passes through the colon at a normal rate, patients find it difficult to evacuate their bowels. Patients in this category sometimes meet the criteria for IBS with constipation (IBS-C). The primary difference between chronic constipation and IBS-C is the prominence of abdominal pain or discomfort in IBS. Patients with NTC usually have a normal physical examination.

STC is characterized by infrequent bowel movements, decreased urgency, or straining to defecate. It occurs more commonly in female patients. Patients with STC have impaired phasic colonic motor activity. They may demonstrate mild abdominal distention or palpable stool in the sigmoid colon.

Pelvic floor dysfunction is characterized by dysfunction of the pelvic floor or anal sphincter. Patients often report prolonged or excessive straining, a feeling of incomplete evacuation, or the use of perineal or vaginal pressure during defecation to allow the passage of stool, or they may report digital evacuation of stool.”

We won’t be dealing with secondary constipation today since that doesn’t include drugs in its etiology.

What does happen in your body during constipation? This is what the Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4059-constipation has to say:

“Constipation happens because your colon absorbs too much water from waste (stool/poop), which dries out the stool making it hard in consistency and difficult to push out of the body.

To back up a bit, as food normally moves through the digestive tract, nutrients are absorbed. The partially digested food (waste) that remains moves from the small intestine to the large intestine, also called the colon. The colon absorbs water from this waste, which creates a solid matter called stool. If you have constipation, food may move too slowly through the digestive tract. This gives the colon more time – too much time – to absorb water from the waste. The stool becomes dry, hard, and difficult to push out.”

Imagine, drugs to improve your health taxing your health. Luckily, since you need to take the prescribed drugs to alleviate whatever your medical diagnosis is, there are methods to relieve your constipation. Here’s WebMD’s (https://www.webmd.com/digestive-disorders/constipation-relief-tips) advice:

“One way to keep things moving is by getting enough fiber in your diet, which makes stool bulkier and softer so it’s easier to pass. Gradually increase the amount of fiber in your diet until you’re getting at least 20 to 35 grams of fiber daily.

Good fiber sources include:

  • Bran and other whole grains found in cereals, breads, and brown rice
  • Vegetables such as Brussels sprouts, carrots, and asparagus
  • Fresh fruits, or dried fruits such as raisins, apricots, and prunes”
  • Beans

While you’re having an issue with constipation, limit foods that are high in fat and low in fiber, like cheese and other dairy products, processed foods, and meat. They can make constipation worse.

And on the subject of diet, water is important for preventing constipation, too. Try to drink at least 8 glasses of water a day.

Also, exercise regularly. Moving your body will keep your bowels moving, too.”

Wait a minute. We’re Chronic Kidney Disease patients. That’s means some of the foods listed above may not be allowed on our renal diets. For instance, dried raisin, apricots, and prunes are too high in potassium for CKD patients. You need to speak with your renal dietitian before changing your diet.

As Benjamin Franklin stated, “an ounce of prevention is worth a pound of cure.” Let’s see what we can find on prevention.

  • Increasing your fiber intake: Fiber-rich foods, such as fruits, vegetables and whole grains, all help improve gut function. If you have bowel sensitivity, you’ll want to avoid high-fructose fruits, such as apples, pears and watermelon, which can cause gas.
  • Getting more exercise: Regular exercise can help keep stool moving through the colon.
  • Drinking more water: Aim for eight glasses daily, and avoid caffeine, as it can be dehydrating.
  • Go when you feel like it: When you feel the urge to go, don’t wait.”

Thank you to Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/conditions-and-diseases/constipation-causes-and-prevention-tips for this information. Will you look at that? Prevention methods for constipation are almost the same as how to treat constipation. Better get started, folks.

Until next week,

Keep living your life!

Good Oils or Bad Oils?     

 Here’s hoping those of you in the U.S.A. had a safe and thoughtful July 4th. This is a peculiar year with different kinds of celebration or none at all.

I’m going to jump right in to a reader’s question since it is the source of today’s blog. Melita wanted to know if it was a good idea for Chronic Kidney Disease patients to take fish oil, flaxseed oil, or virgin coconut oil. As my children used to say when they were little and we were doing a home experiment to find out if something was true or not, “Let’s find out.”

Before we start, I want to make it clear to Melita and everyone else that it is important you ask your nephrologist the questions you have. I am not a doctor, have never claimed to be one, and can only do some superficial researching for you while you wait to speak with your nephrologist. Another thought to keep in mind is that every patient is different. Usually, you eat according to your labs… unless your nephrologist has something else to say.

Let’s start with fish oil. Back at the end of 2016, the National Center for Biotechnology Information, which is part of the National library of Medicine, which is itself part of the National Institutes of Health, conducted a literature review concerning Omega 3 (part of fish oil). I found it at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5241408/.

“At least until more clear recommendations are available, the omega-3 PUFA intake guidelines released by American Heart Association (AHA) suggest rational intake goals (approximately 1g EPA + DHA per day) in advanced CKD. Fortunately, safety profile of omega-3 doses recommended by AHA is excellent. Aside from minimal gastrointestinal side effects (e.g., nausea, stomach upset, eructation, fishy aftertaste), omega-3 consumption at these doses do not cause other serious adverse effects and thus can be considered safe in advanced CKD patients.”

I needed some help with the initials. Maybe you do, too.

PUFA means polyunsaturated fatty acid.

EPA means eicosapentaenoic acid, an omega-3 fatty acid.

DHA means docosahexaenoic acid, an omega-3 fatty acid.

The definitions above were hobbled together from numerous sources.

One thing to keep in mind is that the above literature review was from the point of using omega-3 for the pruritus (itching) that may accompany more advanced CKD. However, it does show us that omega-3 is safe for CKD patients.

On to flaxseed oil. The Mayo Clinic at https://advancingthescience.mayo.edu/2019/09/30/people-with-kidney-disease-should-be-cautious-with-supplementspeople-with-kidney-disease-should-be-cautious-with-supplements/#:~:text=Flaxseed%20oil%2C%20the%20most%20commonly,which%20translates%20to%20167%2C500%20Americans says no to flaxseed oil. According to a recent study published in the American Journal of Kidney Diseases that they cited:

“Flaxseed oil, the most commonly used high risk supplement that contains phosphorus, was taken by 16 percent of patients with normal or mildly reduced kidney function. In addition, 1.3 percent of patients who were unaware they had moderate kidney impairment took flaxseed oil, which translates to 167,500 Americans. And while phosphorus is not listed on the flaxseed oil nutrition information label, a tablespoon (about 10 grams) of whole flaxseeds has about 62 milligrams of phosphorus, or about 7% of the daily value for a person without chronic kidney disease. In addition, flaxseed and flaxseed oil may interact with blood-thinning and blood pressure drugs, and may decrease absorption for any oral drug, according to Mayo Clinic.”

Now, if you remember, we as CKD patients need to limit phosphorous, as well as potassium, protein, and sodium. As the University of Wisconsin-Madison’s School of Medicine and Public Health at https://www.uwhealth.org/healthfacts/nutrition/320.pdf tells us,

“You may also need to control your phosphorus intake through diet and medicines. If phosphorus builds up in the blood it can cause weak and brittle bones and skin itching. Over time, your heart and blood vessels can become damaged. To control phosphorus levels, phosphorus binding medicines must be taken at the proper time.… “

Years ago, I wrote a blog about why flaxseed and products containing flaxseed are not good choices for us as CKD patients. It seems the same is true of flaxseed oil.

Well, what about virgin coconut oil? I have a vague memory of coconut being a no-no, but I think we need more than that. I’d often wondered about the use of the term ‘virgin,’ so I tackled that first. Medical News Today at https://www.medicalnewstoday.com/articles/282857#types defined the term for us:

“Extra virgin coconut oil comes from the fruit of fresh, mature coconuts. Processing does not involve high temperatures or added chemicals.”

Got it. While I could not find anything specifically related to the use of virgin coconut oil by CKD patients, I did find many articles mentioning that the oil could be related to cardiovascular detriment. We know that the kidneys and the heart interact closely with each other and that by protecting your heart, you are also protecting your kidneys. WebMD at https://www.webmd.com/diet/features/coconut-oil-and-health#1 simplifies this issue a bit:

“The American Heart Association says to limit saturated fat to no more than 13 grams a day. That’s the amount found in about one tablespoon of coconut oil.

Fans of coconut oil point to studies that suggest the MCT-saturated fat in coconut could boost your HDL or ‘good’ cholesterol. This, they claim, makes it less bad for your heart health than the saturated fat in animal-based foods like cheese and steak or products containing trans fats.

But it also raises your LDL ‘bad’ cholesterol.

A quick cholesterol lesson:

  • LDL — helps form plaque that blocks your arteries
  • HDL — helps remove LDL

‘But just because coconut oil can raise HDL cholesterol doesn’t mean that it’s great for your heart,’ Young says. ‘It’s not known if the rise in beneficial cholesterol outweighs any rise in harmful cholesterol.’

At best, she says, coconut oil could have a neutral impact on heart health, but she doesn’t consider it ‘heart-healthy.’ ”

Anyone of these three oils could be a separate blog by itself. If you’d like to see a blog about one of them, just let me know.

Before I forget, remember Flavis the low protein medical food products? We tried their Fette Tostate, a cracker toast and found it very pleasing. When I was having stomach issues associated with chemotherapy, I tossed a few of them into chicken noodle soup – the only food I could tolerate at the time. They absorbed the broth and were just plain delicious.

Until next week,

Keep living your life!

 

How Sweet It Isn’t

Hello again. Last week when I was writing about Bipolar Disorder and Chronic Kidney Disease, I mentioned nephrogenic diabetes insipidus. During the week I realized how little I know about that.

Let’s start by going back and reviewing what I wrote last week:

“What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

Frankly, that’s not enough information for me, although it’s pretty clear. Former English teacher here. Let’s take a look at the words themselves. Keep in mind, this is what I learned along the years.

Nephro = kidneys

Genic = Beginning in

So we know this disease begins in the kidneys. And diabetes? According to Michigan State University at https://www.canr.msu.edu/news/how_diabetes_got_its_name,

“The ancient Greek word for diabetes means, ‘passing though; a large discharge of urine.’ The meaning is associated with frequent urination, which is a symptom of diabetes.”

And finally insipidus. I found myself turning to Wikipedia at https://en.wikipedia.org/wiki/Diabetes_insipidus#:~:text=”Insipidus”%20comes%20from%20Latin%20language,or%20zest%3B%20not%20tasty for help with this.

” ‘Insipidus’ comes from Latin language insipidus (tasteless), from Latin: in- ‘not’ + sapidus ‘tasty’ from sapere ‘have a taste’ — the full meaning is ‘lacking flavor or zest; not tasty’.”

This one I didn’t quite get. Back to the above link to figure out what tasteless has to do with this disease.

“Application of this name to DI arose from the fact that diabetes insipidus does not cause glycosuria (excretion of glucose into the urine).”

Ah, so the urine is not sweet. Reminder: Diabetes can be diagnosed by the doctor tasting the urine. While this was more common in the 1600s, I have read about doctors tasting urine for diabetes more recently and even currently. If the urine is sweet, diabetes is present.

This is interesting. I’d never considered a form of diabetes that didn’t deal with blood glucose, which may also be called blood sugar, so sweet. Of course, I then began to wonder if taking lithium was the only way to develop this disease. The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/diabetes-insipidus/symptoms-causes/syc-20351269#:~:text=Nephrogenic%20diabetes%20insipidus%20occurs%20when,or%20a%20chronic%20kidney%20disorder was quite a bit of help here:

“Nephrogenic diabetes insipidus occurs when there’s a defect in the kidney tubules — the structures in your kidneys that cause water to be excreted or reabsorbed. This defect makes your kidneys unable to properly respond to ADH.

The defect may be due to an inherited (genetic) disorder or a chronic kidney disorder. Certain drugs, such as lithium or antiviral medications such as foscarnet (Foscavir), also can cause nephrogenic diabetes insipidus.”

This is a lot of new information to understand unless we get more help. Let’s take a look at kidney tubules now. I turned to my old favorite Healthline at https://www.healthline.com/health/human-body-maps/kidney#nephrons and found the following:

“Each tubule has several parts:

  • Proximal convoluted tubule. This section absorbs water, sodium, and glucose back into the blood.
  • Loop of Henle. This section further absorbs potassium, chloride, and sodium into the blood.
  • Distal convoluted tubule. This section absorbs more sodium into the blood and takes in potassium and acid.

By the time fluid reaches the end of the tubule, it’s diluted and filled with urea. Urea is byproduct of protein metabolism that’s released in urine.”

That makes sense, but what about this ADH? What is that?  My Health Alberta Ca at https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=hw211268 tells us:

“Antidiuretic hormone (ADH) is a chemical produced in the brain that causes the kidneys to release less water, decreasing the amount of urine produced. A high ADH level causes the body to produce less urine. A low level results in greater urine production.

Normally, the amount of ADH in the body is higher during the night. This helps prevent urination while you are sleeping. But if the levels of ADH remain low during the night, the body will produce large amounts of urine, so urination during the night is more likely.”

We know how you can develop nephrogenic diabetes insipidus, but how do you treat it once you’ve been diagnosed? WebMD at https://www.webmd.com/diabetes/guide/nephrogenic-diabetes-insipidus-symptoms-causes-and-treatments offers us the following:

“If a drug like lithium is responsible, switching medicines might improve nephrogenic diabetes insipidus.

Most adults with nephrogenic diabetes insipidus are able to keep up with fluid losses by drinking water. For some people, though, the symptoms of near-constant thirst and urination can become intolerable. Some treatments can reduce the symptoms of nephrogenic diabetes insipidus, at least somewhat:

All adults and children with nephrogenic diabetes insipidus should take frequent bathroom breaks. This helps to avoid over-distending the bladder, which can cause long-term problems, though rarely.

The most important treatment for nephrogenic diabetes insipidus is to ensure constant access to lots of water. Not keeping up with fluid losses can lead to dehydration or electrolyte imbalances, which can sometimes be severe. Seek medical help if symptoms don’t improve after rehydrating, eating fresh fruit, and taking a multivitamin.”

Now, the biggie…. Is this rare disease curable? Unfortunately it isn’t, although,

“For individuals with acquired NDI treating the underlying cause (e.g., correcting metabolic imbalances or discontinuing drug use) can reverse the kidneys resistance to vasopressin. [Gail here again: Vasopressin is another name for ADH as far as I can tell.] However, this reversal may take weeks. In some cases caused by the use of drugs such as lithium, it may take years for the kidneys to respond to vasopressin again or it can become irreversible.”

Thank you to National Organization for Rare Diseases (NORD) at https://rarediseases.org/rare-diseases/nephrogenic-diabetes-insipidus/ for the above information.

I feel like I’ve been down the rabbit hole with Alice with all this new information about a rare disease that your already existing kidney disease may cause. Hopefully, you won’t be one of its victims.

Until next week,

Keep living your life!

Bipolar Disorder and Chronic Kidney Disease

It turns out I know more people with bipolar disorder than I’d thought. Of course, that led me to wonder again what, if anything, this might have to do with CKD. That’s just the way my mind works. Everything – and I do mean everything – leads back to CKD for me. So, as usual, I started asking them questions and poking around on the internet.

It seems that most of them are taking lithium to help control the bipolar disorder. Okay, I’ll bite: what is lithium? Drugs.com at https://www.drugs.com/lithium.html has quite a lot to say about this drug, but I’ll start with the basic definition:

Lithium affects the flow of sodium through nerve and muscle cells in the body. Sodium affects excitation or mania.

Lithium a mood stabilizer that is a used to treat or control the manic episodes of bipolar disorder (manic depression). Manic symptoms include hyperactivity, rushed speech, poor judgment, reduced need for sleep, aggression, and anger.

Lithium also helps to prevent or lessen the intensity of manic episodes.”

Notice sodium is mentioned. Keep that in mind while we backtrack for a definition of bipolar disorder. It seems I jumped right in without giving you some of the necessary background information. I’ll rectify that right now.

The National Institute of Mental Health at https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml tells us:

“Bipolar disorder (formerly called manic-depressive illness or manic depression) is a mental disorder that causes unusual shifts in mood, energy, activity levels, concentration, and the ability to carry out day-to-day tasks.

There are three types of bipolar disorder. All three types involve clear changes in mood, energy, and activity levels. These moods range from periods of extremely ‘up,’ elated, irritable, or energized behavior (known as manic episodes) to very ‘down,’ sad, indifferent, or hopeless periods (known as depressive episodes). Less severe manic periods are known as hypomanic episodes.

  • Bipolar I Disorder— defined by manic episodes that last at least 7 days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, depressive episodes occur as well, typically lasting at least 2 weeks. Episodes of depression with mixed features (having depressive symptoms and manic symptoms at the same time) are also possible.
  • Bipolar II Disorder— defined by a pattern of depressive episodes and hypomanic episodes, but not the full-blown manic episodes that are typical of Bipolar I Disorder.
  • Cyclothymic Disorder (also called Cyclothymia)— defined by periods of hypomanic symptoms as well as periods of depressive symptoms lasting for at least 2 years (1 year in children and adolescents). However, the symptoms do not meet the diagnostic requirements for a hypomanic episode and a depressive episode.

Sometimes a person might experience symptoms of bipolar disorder that do not match the three categories listed above, which is referred to as ‘other specified and unspecified bipolar and related disorders’ .”

In the July 3rd, 2017, blog, I wrote about those who already have CKD and then develop bipolar disorder.

“Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend…

“How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

As we can see, this is not the first time I’ve written about a dual diagnose of these two diseases – one mental, one physical – and how they affect each other. One of the interesting facts I found is that you need to tell your doctor if you have kidney disease when he prescribes lithium. None of my friends has CKD yet, although one is under surveillance (if that’s the proper word) since she’s having some decline in her eGFR.

Remember I asked you to keep that sodium reference in mind? One problem with lithium is that it requires you to include sodium in your diet. As a CKD patient, you’re asked to limit your sodium intake. You can’t do both at once. This is from WebMD at https://www.webmd.com/bipolar-disorder/guide/bipolar-disorder-lithium#2:

“Tell your doctor about history of cancerheart diseasekidney diseaseepilepsy, and allergies. Make sure your doctor knows about all other drugs you are taking. Avoid products that are low in sodium (salt) since a low sodium diet can lead to excessively high lithium levels.

So what can you do to protect your kidneys if you must take lithium for your mental health? This is what Psychiatric Times at https://www.psychiatrictimes.com/view/6-ways-protect-kidneys-while-prescribing-lithium has to say about the subject:

Tip 1. Avoid toxicity

The link between lithium and renal dysfunction may be explained by exposure to toxic lithium levels. Toxic levels kill renal cells, and that damage builds up every time the level rises above the toxic line….

Tip 2. Keep the level low

Keeping the lithium level as low as possible can prevent renal impairment. The ideal level needs to be personalized and tends to fall with age….

Tip 3. Dose lithium once a day

Dosing lithium once in the evening reduces the risk of renal problems….

If high serum levels are needed to treat active mania, dosing twice a day may be necessary to avoid toxic peaks. The line of toxicity is different for each patient because it’s defined by symptoms.…

Tip 4. Drinking and urinating too much

Polyuria and polydipsia are common adverse effects of lithium (30% to 80%), and they are not always benign. When severe, they may indicate nephrogenic diabetes insipidus (NDI), which means that changes in the renal tubules are impeding the kidneys ability to concentrate the urine. Those changes raise the risk of future renal impairments.

Besides stopping lithium, the main treatment for NDI is amiloride, a potassium sparing diuretic (5 mg po qd). Amiloride may prevent further renal problems by reducing fibrotic changes in the kidneys…. This medication is best managed through consultation with the medical team because it carries a risk of hyperkalemia, particularly in patients with renal insufficiency or diabetes.

Tip 5. Consider N-Acetylcysteine

N-Acetylcysteine (NAC) is an antioxidant that can protect and even reverse renal toxicity, including toxicity from lithium…. NAC is part of a healthy diet, and the capsule form is safe, well-tolerated (the main risk is constipation), and inexpensive. Sounds like a winner, but there is one catch. The renal studies…were all done in animals.

However, there is another reason to use NAC in bipolar disorder. This supplement is effective for bipolar depression in some, but not all, studies… and those benefits are more pronounced in the medically ill….

The dose in bipolar disorder (2000 mg/day) is about twice the amount that was used for renal protection (10 mg/kg)….

Tip 6. Measure

Renal function should be monitored every 3 to 6 months on lithium. Older patients benefit from more frequent monitoring, as do those with a history of toxicity, high serum levels, or drug interactions. Creatinine is usually sufficient, but a more accurate measure of renal function is the estimated glomerular filtration rate (eGFR)….

Laboratory changes that should prompt a nephrology consult include:

  • eGFR < 30 ml/min/1.73m2
  • Creatinine ≥ 1.5 mg/dL
  • A decline of eGFR by more than 4 ml/min/1.73m… per year….”

There’s more, much more, on this site if you’re interested.

Until next week,

Keep living your life!

 

A Different Kind of App  

Periodically for the last decade, I’ve written about apps that could help us manage our Chronic Kidney Disease. They would be those with electrolyte counters, portion counters, GFR calculators, and even calorie counters or exercise counters. They were helpful. Some still exist; some have gone by the wayside.

In recent years, I’ve been vocal about the necessity for CKD patients to understand what our disease is, how it came to be, and what we might do about it. This is different from wanting people to be aware of CKD. My contention is that the educated patient is the one most able to help him or herself.

Responsum for CKD does just that, but I’ll let them explain their app themselves. This is from their April 28th blog at https://responsumhealth.com/great-news-for-the-ckd-community/.

“I have great news to share with Responsum Health’s extended family of supporters and everyone around the world whose lives are affected by kidney disease. Responsum Health, with support from Otsuka Pharmaceutical, is launching a new platform and app designed specifically for people with kidney disease, including chronic kidney disease (CKD)—a condition that affects 37 million Americans.

Responsum for CKD represents our company’s second disease-specific platform—the first being Responsum for PF—and includes some amazing new features. These include a translation function into seven languages and a dynamic social wall called Community Chat, which automatically suggests articles and resources based upon each comment or entry. Just like with pulmonary fibrosis, Responsum for CKD will be available as a free web-based platform and a mobile app for iOS and Android.

We’ve recruited an all-star Content Advisory Council made up of some of the top specialists in CKD to serve as our content validators. Instead of partnering with a specific patient advocacy group to vet our content, we chose this approach to ensure that the platform is free of commercial bias. We will roll out the names of our esteemed council alongside the app launch.

To the CKD community, Responsum Health is on the way! We can’t wait to serve you, join you, learn from you, and listen to you.

Let’s get started!

Andy Rosenberg
Founder and CEO, Responsum Health

Perhaps we could use a bit more information. Let’s try their May 5th press release at https://responsumhealth.com/press-and-media/responsum-health-launches-innovative-kidney-disease-information-platform/.

“Responsum Health Launches Innovative Kidney Disease Information Platform
New technology supports patients, families, caregivers, and healthcare professionals

​[WASHINGTON, D.C., May 28 2020] — Today, Responsum Health (Responsum), an innovative developer of personalized patient apps and chronic disease knowledge communities, with support from Otsuka Pharmaceutical, a global healthcare company, announced the launch of an online connection and knowledge platform for patients with kidney disease, such as chronic kidney disease (CKD), a condition that affects an estimated 37 million Americans. The platform, called Responsum for CKD, can be accessed for free via web browser or mobile app.

Designed to meet the needs of patients, families, caregivers, and healthcare professionals, Responsum for CKD offers a number of informational and community-oriented features. At its core, Responsum replaces unreliable web aggregators and social sites by providing patients and caregivers with a customized Newsfeed that has easy-to-read summaries of important kidney health news items. All of the information found on Responsum’s platforms is written by professional health writers and vetted by a team of researchers under the guidance of an advisory council, which is made up of leading kidney health experts.

Other features include a moderated social wall to serve as a community chat room and the Patient One-Sheet, which allows patients to easily collect, download, print, and share their key medical information. Patients will also have access to a robust collection of trusted patient support links.

“We are grateful that Otsuka is willing to support our mission to educate, support, and empower patients with chronic conditions through our unique approach to providing patients with the information they need to drive better outcomes,” said Andrew Rosenberg, founder of Responsum Health. “By working with recognized leaders from the patient advocacy community, we have created a trusted online platform that fills a vital information gap—while simultaneously creating an authentic, welcoming online community for people with kidney disease.”

About Responsum Health

Responsum Health’s mission is to build and support online knowledge communities for chronic disease patients. The company offers a free, revolutionary patient engagement platform that monitors, searches, and curates the Internet to generate a personalized news feed of article summaries, which are vetted by Responsum’s patient group partners. Responsum wraps the news feed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share them with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and support one another through a moderated, disease-specific social wall.”

The one thing that has been missing from other CKD apps is the education. I write to help people become aware of CKD and maybe understand a little bit of what affects you as a CKD patient. Responsum has articles in real time, so to speak. What I mean by that is if you’re interested in potassium and ask a question in the community about it, you also have articles attached that will explain more about your topic: no searching, no delay, just click on the upper right hand corner. How marvelous.

I think I’ve mentioned that I’ve been involved in what we used to call think tanks about what CKD patients need. My answer has always been education… and what could be better than immediate education? The one sheet with your medical information is also a boon, but not specific to only this app.

But the community with instant articles about your topic? Priceless. I would say that it’s free is also priceless, but that’s a little bit obvious. Do I recommend this app? Yes. Do I use this app? Yes… and if asked my opinion, I would say you should use it, too. The key to our kidney health just may be self-education.

Until next week,

Keep living your life!

Echo… Echo… Echo…

Remember that golden time I’ve mentioned before? The time when I problem solve and write in my head just as I’m waking up? Well, today the word was echo at that time. Echo? As in echo chamber? Echo Canyon? No, doesn’t feel right. Got it! Echocardiogram.

The English teacher in me is already delighted. Why? I know what most of the word means through my college study of Greek and Latin roots. Card means heart, io is simply a connective, and gram means write. What about echo you ask? I think we all know what that means in common usage, but in conjunction with cardiogram? Yep, time for some help.

The Merriam-Webster Dictionary, still my favorite, at https://www.merriam-webster.com/dictionary/ echocardiography tells us an echocardiogram is,

“the use of ultrasound to examine the structure and functioning of the heart for abnormalities and disease”

Let’s put in a little reminder of what an ultrasound is here. This is from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5897:

“A test in which high-frequency sound waves (ultrasound) are bounced off tissues and the echoes are converted into a picture (sonogram).”

Oh, like the picture of my grandson growing in his mom’s womb. Great, now what does this have to do with Chronic Kidney Disease? I just had an echocardiogram because my oncologist was concerned about the great distance between my diastolic (lower) and systolic (upper) numbers on my blood pressure readings. It was fine, but it did get me to thinking about what CKD and the heart have in common.

Here’s a reminder from Healthline at https://www.healthline.com/health/diastole-vs-systole#:~:text=Your%20systolic%20blood%20pressure%20is,bottom%20number%20on%20your%20reading of what the two numbers mean:

“Your systolic blood pressure is the top number on your reading. It measures the force of blood against your artery walls while your ventricles — the lower two chambers of your heart — squeeze, pushing blood out to the rest of your body.

Your diastolic blood pressure is the bottom number on your reading. It measures the force of blood against your artery walls as your heart relaxes and the ventricles are allowed to refill with blood. Diastole — this period of time when your heart relaxes between beats — is also the time that your coronary artery is able to supply blood to your heart.”

Got it. This next quote is a little medicalese, but basically it’s saying there are specific difficulties if you have both CKD and high blood pressure. It’s from Kidney International at https://www.kidney-international.org/article/S0085-2538(19)30276-5/fulltext :

“In CKD and ESKD, risk factors for HF include long-standing hypertension with often worsened blood pressure (BP) control as CKD worsens, salt and water retention causing excessive preload, and cardiomyopathic factors including left ventricular (LV) hypertrophy and fibrosis. In addition, there are CKD- and ESKD-specific factors that affect afterload (increased arterial stiffness and high output shunting through arteriovenous fistulae or grafts) as well as load-independent factors (neurohormonal activation, impaired iron utilization, anemia, demand ischemia, profibrotic factors [e.g., fibroblast growth factor 23 {FGF-23}], inflammation, etc.)…. Arteriovenous fistulae or grafts have been reported to worsen right ventricular hypertrophy, increase pulmonary pressures, associate with significant right ventricular dilatation, and reduce right ventricular function, which are closely linked to survival….”

An echocardiogram can show in real time if all the ventricles of your heart are working correctly as far as pumping blood and and/or leaking when your heart should be at rest.

Well, why get an echocardiogram if you already know you have CKD and high blood pressure? Here’s WebMD at https://www.webmd.com/heart-disease/guide/diagnosing-echocardiogram#4’s response.  You can find much more information there, too, as is true of all the sites mentioned.

“An echocardiogram can help your doctor diagnose several kinds of heart problems, including:

  • An enlarged heart or thick ventricles (the lower chambers)
  • Weakened heart muscles
  • Problems with your heart valves
  • Heart defects that you’ve had since birth
  • Blood clots or tumors”

Mayo Clinic at https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856 offers an easily understandable explanation of the actual process. There are many types of echocardiograms, but this is the most usual.

Transthoracic echocardiogram

In this standard type of echocardiogram:

  • A technician (sonographer) spreads gel on a device (transducer).
  • The sonographer presses the transducer firmly against your skin, aiming an ultrasound beam through your chest to your heart.
  • The transducer records the sound wave echoes from your heart.
  • A computer converts the echoes into moving images on a monitor.”

This is yet another reminder of why we need to have both the heart and kidneys functioning well. This one is from Heart.org at https://www.heart.org/en/health-topics/high-blood-pressure/health-threats-from-high-blood-pressure/how-high-blood-pressure-can-lead-to-kidney-damage-or-failure#:~:text=The%20:

  • Damaged kidney arteries do not filter blood well. Kidneys have small, finger-like nephrons that filter your blood. Each nephron receives its blood supply through tiny hair-like capillaries, the smallest of all blood vessels. When the arteries become damaged, the nephrons do not receive the essential oxygen and nutrients — and the kidneys lose their ability to filter blood and regulate the fluid, hormones, acids and salts in the body.
  • Damaged kidneys fail to regulate blood pressure. Healthy kidneys produce a hormone called aldosterone to help the body regulate blood pressure. Kidney damage and uncontrolled high blood pressure each contribute to a negative spiral. As more arteries become blocked and stop functioning, the kidneys eventually fail.”

The American Journal of Kidney Disease at https://www.ajkd.org/article/S0272-6386(18)30598-5/fulltext gives us these final words on why an echocardiogram could be necessary for certain CKD patients:

“Abnormal cardiac structure and function are common in chronic kidney disease (CKD) and end-stage renal disease (ESRD) and linked with mortality and heart failure.”

Topic change: We tried Flavis’s high protein spaghetti and found it just as light and delightful as their penne. This, I can endorse.

Oh, before I forget. I like to read… a lot. One of the books I read recently was Ray Flynt’s Transplanted Death. I don’t want to tell you too much about it, except that it is a well-written murder mystery with a good story that revolves around transplant recipients, two of them kidney recipients. I am recommending this book.

Until next week,

Keep living your life!

Two or More

Time for another reader question, but first, let’s pay attention to what day today is. Many people see today as the day for bar-b-ques or backyard ball games (or, at least, they did before Covid 19). When I married Bear a little more than seven years ago, he explained about Memorial Day. I knew it was to honor those who died protecting us, but it was so much more meaningful when explained by a veteran… someone who didn’t die protecting us and lived on to meet me and marry me. So give some quiet thoughts to these men and woman today, will you?

Now, the question. This reader has both lupus like immune mediated glomerular nephritis and Wegeners vasculitis with kidney involvement. Her question is how does she handle both?  And, here I thought I had it bad with pancreatic cancer (now gone), Chronic Kidney Disease, diabetes, and a whole host of what I consider lesser diseases!

Starting slowly is a must here since I am like a fish out of water with these two diseases. According to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088,

”Granulomatosis with polyangiitis is an uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys.

Formerly called Wegener’s granulomatosis, this condition is one of a group of blood vessel disorders called vasculitis. It slows blood flow to some of your organs. The affected tissues can develop areas of inflammation called granulomas, which can affect how these organs work.

Early diagnosis and treatment of granulomatosis with polyangiitis might lead to a full recovery. Without treatment, the condition can be fatal.”

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4757-granulomatosis-with-polyangiitis-gpa-formerly-called-wegeners/management-and-treatment tells us,

“People with GPA who have critical organ system involvement are generally treated with corticosteroids [Gail here: commonly just called steroids] combined with another immunosuppressive medication such as cyclophosphamide (Cytoxan ®) or rituximab (Rituxan®). In patients who have less severe GPA, corticosteroids and methotrexate can be used initially. The goal of treatment is to stop all injury that is occurring as a result of GPA. If disease activity can be completely ‘turned off,’ this is called ‘remission.’ Once it is apparent that the disease is improving, doctors slowly reduce the corticosteroid dose and eventually hope to discontinue it completely. When cyclophosphamide is used, it is only given until the time of remission (usually around 3 to 6 months), after which time it is switched to another immunosuppressive agent, such as methotrexate, azathioprine (Imuran®), or mycophenolate mofetil (Cellcept®) to maintain remission. The treatment duration of the maintenance immunosuppressive medication may vary between individuals. In most instances, it is given for a minimum of 2 years before consideration is given to slowly reduce the dose toward discontinuation.”

Okay, got it. Now let’s take a look at lupus like immune mediated glomerular nephritis. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064 reminds us about lupus:

Lupus: A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heartlungs, kidneys, joints, and nervous system. The first symptom is a red (or dark), scaly rash on the nose and cheeks, often called a butterfly rash because of its distinctive shape. As inflammation continues, scar tissue may form, including keloid scarring in patients prone to keloid formation. The cause of lupus is unknown, although heredity, viruses, ultraviolet light, and drugs may all play a role. Lupus is more common in women than in men, and although it occurs in all ethnic groups, it is most common in people of African descent. Diagnosis is made through observation of symptoms, and through testing of the blood for signs of autoimmune activity. Early treatment is essential to prevent progression of the disease. A rheumatologist can provide treatment for lupus, and this treatment has two objectives: treating the difficult symptoms of the disease and treating the underlying autoimmune activity. It may include use of steroids [Gail here: Remember they’re used in treating this reader’s other disease, too.] and other anti-inflammatory agents, antidepressants and/or mood stabilizers, intravenous immunoglobulin, and, in cases in which lupus involves the internal organs, chemotherapy.

But our reader has lupus LIKE immune mediated glomerular nephritis, so she may need to deal with the symptoms, but not the treatment. Wikipedia at https://en.wikipedia.org/wiki/Immune-mediated_inflammatory_diseases informs us,

“An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.”

That’s as close as I could get to the definition of immune mediated.  We know that glomerular means of or about the glomerulus. Dictionary.com at https://www.dictionary.com/browse/glomerular helped me out here:

“Also called Malpighian tuft. a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”

And nephritis? After a decade of writing this blog, we probably all know that’s an inflammation of the nephrons.

Let’s combine the pieces to see what we get.  The nephron’s glomeruli are inflamed in the same way lupus inflames the organs. Remember that GPA also causes inflammation. (By the way, this is the perfect point in the blog to remind you I am not a doctor and have never claimed to be one.)

But how is it treated? Here’s where I admit defeat. There is quite a bit of information available on Lupus, Lupus Nephritis, and the like. But I could not find anything that includes ‘Lupus like.’

The commonality between the two diseases seems to be inflammation. But isn’t that at the root of all Chronic Kidney Disease? I admit to being surprised twice while writing this particular blog:

  • GPA was called by its older name by the doctor.
  • The dearth of treatment information for lupus like immune mediated glomerular nephritis.

Until next week,

Keep living your life!

D’immunity

I can just see your faces now. Huh? What is that? The concept makes sense, but the word doesn’t. Do you remember my mentioning that one of the joys of being a writer is that you make up words? Well, that’s one I made up right after my doctor talked with me about vitamin D and immunity. He was talking about warding off a reoccurrence of cancer, but when I started researching I found that it has to do with all immunity.

Wait a minute. Just as I keep reminding you that I’m not a doctor and never claimed to be one, it’s important you realize that when I use the word ‘research,’ I mean searching the web and whatever journals or texts I have available. I am not a researcher in the true sense of the word. My favorite dictionary, The Merriam-Webster at https://www.merriam-webster.com/dictionary/research can help us out here:

1: careful or diligent search

2: studious inquiry or examination especially investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws

3: the collecting of information about a particular subject”

(‘Er’ is a suffix that means ‘one who,’ so a researcher is one who researches.) Most of us think of a researcher as the second definition. I think of myself as the third definition.

Okay, now that’s cleared up let’s get back to the miraculous vitamin D and your immunity. ScienceDaily at https://www.sciencedaily.com/releases/2019/04/190417111440.htm tells us,

“The University of Edinburgh team focused on how vitamin D affects a mechanism in the body’s immune system — dendritic cells’ ability to activate T cells.

In healthy people, T cells play a crucial role in helping to fight infections. In people with autoimmune diseases, however, they can start to attack the body’s own tissues.

By studying cells from mice and people, the researchers found vitamin D caused dendritic cells to produce more of a molecule called CD31 on their surface and that this hindered the activation of T cells.

The team observed how CD31 prevented the two cell types from making a stable contact — an essential part of the activation process — and the resulting immune reaction was far reduced.

Researchers say the findings shed light on how vitamin D deficiency may regulate the immune system and influence susceptibility to autoimmune diseases.

The study, published in Frontiers in Immunology, was funded by the Medical Research Council, Biotechnology and Biological Sciences Research Council, Natural Environment Research Council and Wellcome.”

If you’re like me, you’ll need help with some of these terms.

Dendritic cells are:

“a branching cell of the lymph nodes, blood, and spleen that functions as a network trapping foreign protein,”

according to Dictionary.com at https://www.dictionary.com/browse/dendritic-cell.

Let’s take a look at T cells now. I was comfortable with MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=11300’s definition:

“T cell: A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body’s immune response to specific pathogens. The T cells are like soldiers who search out and destroy the targeted invaders.

Immature T cells (termed T-stem cells) migrate to the thymus gland in the neck, where they mature and differentiate into various types of mature T cells and become active in the immune system in response to a hormone called thymosin and other factors. T-cells that are potentially activated against the body’s own tissues are normally killed or changed (“down-regulated”) during this maturational process.”

I’m sure my doctor had been telling me about this during the course of my treatment, but last week – now that I’ve been declared cancer free – immunity became a big issue to me and I finally listened with both ears. Maybe you should, too, since we’re in the middle of the Corona Virus Pandemic.

Let’s get some more information about vitamin D and your immunity. Healthline at https://www.healthline.com/nutrition/vitamin-d-coronavirus#effect-on-immune-health gives us another view of vitamin D and the immune system:

“Vitamin D is necessary for the proper functioning of your immune system, which is your body’s first line of defense against infection and disease.

This vitamin plays a critical role in promoting immune response. It has both anti-inflammatory and immunoregulatory properties and is crucial for the activation of immune system defenses ….

Vitamin D is known to enhance the function of immune cells, including T-cells and macrophages, that protect your body against pathogens….

In fact, the vitamin is so important for immune function that low levels of vitamin D have been associated with an increased susceptibility to infection, disease, and immune-related disorders ….

For example, low vitamin D levels are associated with an increased risk of respiratory diseases, including tuberculosis, asthma, and chronic obstructive pulmonary disease (COPD), as well as viral and bacterial respiratory infections….

What’s more, vitamin D deficiency has been linked to decreased lung function, which may affect your body’s ability to fight respiratory infections….”

I caught a word or two in that explanation that we may need defined.

Vocabulary.com at https://www.vocabulary.com/dictionary/pathogen informs us that a pathogen is,

“… is a tiny living organism, such as a bacterium or virus, that makes people sick. Washing your hands frequently helps you avoid the pathogens that can make you sick.”

How about macrophages? I went to News Medical Life Sciences at for their definition.

“Macrophages are important cells of the immune system that are formed in response to an infection or accumulating damaged or dead cells. Macrophages are large, specialized cells that recognize, engulf and destroy target cells. The term macrophage is formed by the combination of the Greek terms “makro” meaning big and “phagein” meaning eat.”

This must be what my doctor was talking about re cancer.

On another note: I am 73, still undergoing chemotherapy, and have Chronic Kidney Disease. Please be kind to me and others like me by wearing your mask, even if you hate it or think it makes you look weak. You could be saving my life.

Until next week,

Keep living your life!

I Never Knew

I’ve already mentioned that I read a lot while undergoing chemotherapy for my pancreatic cancer. I don’t have the energy for much else, although I do find my energy slowly increasing day by day. Often, I come across words or terms that are new to me as I read. One such term is ‘hypertensive nephrosclerosis.’ That’s a mouthful, so let’s start slowly.

‘Hypertensive’ is not a problem since we know that hyper means,

hyper– a prefix appearing in loanwords from Greek, where it meant “over,” usually implying excess or exaggeration (hyperbole); on this model used, especially as opposed to hypo-, in the formation of compound words (hyperthyroid).”

Thank you, Dictionary.com at https://www.dictionary.com/browse/hyper-. A little reminder: a prefix is a group of letters added at the beginning of a word which changes its meaning. Aren’t you glad I was an English teacher for over forty years?

You’ve probably already figured out that ‘tensive’ has to do with some kind of tension. According to Dictionary.com again, but this time at https://www.dictionary.com/browse/tensive?s=ts, it means,

adjective

stretching or straining”

That is a sort of tension, so you’re right. Add the prefix to the root word and suffix and you get ‘hypertension.’ Maybe a little grammar lesson would help here. A suffix is a group of letters added at the end of a word that change its meaning by expressing tendency, disposition, function, connection, etc. (By the way, some of this was taken from – yep – Dictionary.com again. This time at https://www.dictionary.com/browse/-ive?s=t.) What else? Oh, yes, ‘root.’ That’s the main part of the word; in this word, it’s tens. I know, I know, you didn’t come here for a grammar lesson.

Good thing ‘nephrosclerosis’ is a compound word. We know all about ‘nephro’ since it means kidney. And ‘sclerosis?’ That means hardening. This is a good point to mention this can be fatal. A former colleague recently died of sclerosis.

So ‘nephrolsclerosis’ is a hardening of the kidneys. Let’s check that out just to be sure. According to MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=4533:

 Nephrosclerosis: A progressive disease of the kidneys that results from sclerosis (hardening) of the small blood vessels in the kidneys. Nephrosclerosis is most commonly associated with hypertension or diabetes and can lead to kidney failure.

With me so far? Just one more step, let’s add ‘hypertensive’ to ‘nephrosclerosis.’ Emedicine at https://emedicine.medscape.com/article/244342-overview tells us,

“The term hypertensive nephrosclerosis has traditionally been used to describe a clinical syndrome characterized by long-term essential hypertension, hypertensive retinopathy, left ventricular hypertrophy, minimal proteinuria, and progressive renal insufficiency. Most cases are diagnosed based solely on clinical findings….”

Okay, let’s break down the definition of what we just added together to understand this term. You already know what ‘hypertension’ and ‘proteinuria’ are from reading my blogs. If you forgot, use the click throughs in the above definition. That leaves ‘hypertensive retinopathy’ and ‘left ventricular hypertrophy’ since we also know what ‘progressive renal insufficiency’ is.

‘Hypertensive retinopathy’ is summarized by DoveMed, a new site for me whose stated mission is

“We provide reliable unbiased medical information to healthcare consumers and providers by leveraging our unique ecosystem of world class products and services.”

at https://www.dovemed.com/article-synonyms/stage-4-hypertensive-retinopathy/ in this manner:

  • “Hypertensive Retinopathy (HR) refers to abnormal changes of the retina that is located in the back of the eye, due to chronic hypertension (high blood pressure)
  • The retinal arteries are autoregulated, meaning they can control their own shape based on changes in systemic blood pressure. However, at extremely high blood pressures, such as a blood pressure of 140/110 mmHg or over, they are unable to autoregulate. This can result in retinal complications
  • Depending on the severity of the signs and symptoms, Hypertensive Retinopathy can be classified to 4 stages – stage 1, 2, 3, and 4. Stage 1 Hypertensive Retinopathy has mild signs and symptoms, whereas Stage 4 Hypertensive Retinopathy has severe signs and symptoms
  • These changes typically occur in individuals who have had very high blood pressure for several years. The signs and symptoms of Hypertensive Retinopathy may include leakage of fats from the blood vessels, retinal edema (fluid in the retina), and swelling of the optic nerves
  • Some of the complications can include lack of oxygen delivered to the retina, as well as swelling of the macula and optic nerve that can result in the vision being affected
  • The treatment typically consists of controlling systemic hypertension with medications. Prognosis is generally good for individuals with stage 1 or 2 Hypertensive Retinopathy”

That leaves ‘left ventricular hypertrophy.’ Have no fear! The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314 is here to help us out:

“Left ventricular hypertrophy is enlargement and thickening (hypertrophy) of the walls of your heart’s main pumping chamber (left ventricle).

Left ventricular hypertrophy can develop in response to some factor — such as high blood pressure or a heart condition — that causes the left ventricle to work harder. As the workload increases, the muscle tissue in the chamber wall thickens, and sometimes the size of the chamber itself also increases. The enlarged heart muscle loses elasticity and eventually may fail to pump with as much force as needed.

Left ventricular hypertrophy is more common in people who have uncontrolled high blood pressure. But no matter what your blood pressure is, developing left ventricular hypertrophy puts you at higher risk of a heart attack and stroke.

Treating high blood pressure can help ease your symptoms and may reverse left ventricular hypertrophy.”

Adding all this information together, it’s clear that hypertensive blood pressure is going to do you no good in any way. So what do we do to avoid high blood pressure? That’s right! And the CDC backs you up. Take a look at https://www.cdc.gov/bloodpressure/prevent.htm.

“Prevent High Blood Pressure

….Eat a Healthy Diet

Choose healthy meal and snack options to help you avoid high blood pressure and its complications. Be sure to eat plenty of fresh fruits and vegetables.

Talk with your health care team about eating a variety of foods rich in potassium, fiber, and protein and lower in salt (sodium) and saturated fat. For many people, making these healthy changes can help keep blood pressure low and protect against heart disease and stroke.

The DASH (Dietary Approaches to Stop Hypertension) eating plan is a healthy diet plan with a proven record of helping people lower their blood pressure….

Visit the CDC’s Nutrition, Physical Activity, and Obesity website to learn more about healthy eating and nutrition.

Keep Yourself at a Healthy Weight

Having overweight or obesity increases your risk for high blood pressure. To determine whether your weight is in a healthy range, doctors often calculate your body mass index (BMI). If you know your weight and height, you can calculate your BMI at CDC’s Assessing Your Weight website. Doctors sometimes also use waist and hip measurements to assess body fat.

Talk with your health care team about ways to reach a healthy weight, including choosing healthy foods and getting regular physical activity.

Be Physically Active

Physical activity can help keep you at a healthy weight and lower your blood pressure. The Physical Activity Guidelines for Americans recommends that adults get at least 2 hours and 30 minutes of moderate-intensity exercise, such as brisk walking or bicycling, every week. That’s about 30 minutes a day, 5 days a week. Children and adolescents should get 1 hour of physical activity every day.

Visit the website for CDC’s Division of Nutrition, Physical Activity, and Obesity to learn about ways you can be physically active.

Do Not Smoke

Smoking raises your blood pressure and puts you at higher risk for heart attack and stroke. If you do not smoke, do not start. If you do smoke, quitting will lower your risk for heart disease. Your doctor can suggest ways to help you quit.

For more information about tobacco use and quitting, see CDC’s Smoking and Tobacco Use Web site.

Limit How Much Alcohol You Drink

Do not drink too much alcohol, which can raise your blood pressure. Men should have no more than 2 alcoholic drinks per day, and women should have no more than 1 alcoholic drink per day. Visit the CDC’s Alcohol and Public Health website for more information.

Get Enough Sleep

Getting enough sleep is important to your overall health, and enough sleep is part of keeping your heart and blood vessels healthy. Not getting enough sleep on a regular basis is linked to an increased risk of heart disease, high blood pressure, and stroke…. Visit CDC’s Sleep and Sleep Disorders website for resources on how to get better sleep.”

Until next week,

Keep living your life!

Kidney Healthy Food Labels?

How many of you remember the KidneyX competition? Let me refresh your memories, just in case. This is from this year’s January 13th, blog:

“Redesign Dialysis Phase II

Building off the success of KidneyX’s inaugural prize competition, Redesign Dialysis Phase I, Phase II challenges participants to build and test prototype solutions, or components of solutions, that can replicate normal kidney functions or improve dialysis access. Up to 3 winners will each be awarded $500,000.

Submissions are due by 5:00 ET on January 31, 2020.

Who Can Participate?

You can submit a solution even if you did not submit anything in Phase I….

What is KidneyX Looking for in Redesign Dialysis, Phase II?

We are seeking prototype solutions that address any of these categories:

  • Blood Filtration (filtering blood to remove waste and excess fluid)
  • Electrolyte Homeostasis (maintaining appropriate levels of key minerals in the blood)
  • Volume Regulation (regulating the amount of and/or removing excess fluid).
  • Toxin Removal and Secretion (removing, limiting or preventing toxins in the bloodstream).
  • Filtrate Drainage and Connectivity (removing excess filtrate after processing; connectivity issues for filtration, processing, and exterior drainage)
  • Dialysis Access (vascular, peritoneal, blood circuit, or alternative (e.g., GI tract) access)

… design targets, as well as the categories themselves, were developed based on the Kidney Health Initiative’s Technology Roadmap for Innovative Approaches to Renal Replacement Therapy, which is an excellent resource to learn more about technical and scientific needs in this space.

Tests of the prototype’s function or performance should demonstrate rigor, reproducibility, and statistical analysis….

You can learn more at https://www.kidneyx.org/prizecompetitions/RedesignDialysisPhase.”

I was lucky enough to have one of the phase I winners contact me re a two question survey about his entry. That led to a few emails back and forth which resulted in Anthony’s guest blog today….

“My name is Anthony, and I was recently chosen as a winner in the KidneyX, ‘Patient Innovator Challenge’ competition. KidneyX is a recently formed partnership between the US Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN).  According to their website, they were established ‘to accelerate innovation in the prevention, diagnosis, and treatment of kidney disease.’  The competition welcomed the public to submit ideas on how to improve therapeutic options and the quality of life for those living with kidney disease.

As a former employee of a dialysis company, I always thought that there was something more that could be done in terms of the prevention and treatment of people living with kidney disease. The lack of awareness and research around kidney disease was always a concern to me. Quite frankly I never stopped thinking about it, even after my departure from the industry.  Then one day, I came up with an idea that I believe will solve a lot of problems within the CKD community. My solution is ‘Kidney Healthy’ food labels.

Food labels are a major factor in dictating consumer food purchases today. With major food labels such as ‘gluten free’ and ‘organic’ leading the way, many consumers are now allowing food labels to dictate their purchasing decisions. Consumers are now demanding more transparency in the foods they eat, and food labels serve as a driving force for consumers to take control of their health.

The statistics on kidney disease are not very promising. According to the National Kidney Foundation, Chronic Kidney Disease, or CKD affects an estimated 37 million people in the United States, which equates to 15% of the population. 468,000 of those individuals are currently on dialysis (End Stage Renal Disease), a treatment that cost this country $89,000 per patient each year, which equates to a cost of almost $42 billion dollars a year. According to The Kidney Project, ESRD is increasing in the United States by 5% each year, so it’s only inevitable that this cost is going to continue to increase as the years go by. In addition, two million people suffer from ESRD worldwide; this number is increasing by 5-7% each year.

I believe ‘Kidney Healthy’ food labels could serve as a universal solution to slow down the progression, lower the cost, create better patient outcomes, and ultimately bring more awareness to those living with (and without) Chronic Kidney Disease.

I decided to submit my idea to the KidneyX ‘Patient Innovator Challenge’ competition, and was so honored to be chosen as a winner.  Although I do understand that when it comes to kidney disease, there really isn’t a ‘one diet fits all,’ I still would love to live in a world where kidney patients can rely on a universal food label (such as organic or gluten-free). Obviously a food certification process would have to be created to establish this label, or labels for that matter (CKD Stage 1, 2, 3, etc. label), but my goal is to have a more standardized approach to the kidney diet for patients by way of ‘Kidney Healthy’ food labels.

My next step is to get my idea in front of the CKD community. I am currently conducting an independent research project that I need your help with. I believe that creating Kidney Healthy Food labels (similar to organic and gluten-free) will assist in slowing down the progression of Chronic Kidney Disease, and preserve a better quality of life for both CKD and ESRD patients.

As a member of the CKD Community, Please take this 2 Question Survey to help. Your participation is greatly appreciated!

When you are finished, please forward this survey to the CKD community to assist in helping.

Here is the link to the survey:

https://www.surveymonkey.com/r/KidneyHealthyFoodLabels

 

In other news, those who were interested in Flavis’s low protein, low sodium, low phosphorous products may find their Ditali appealing. We enjoyed the delicate taste of this pasta. By the way, their chocolate chip cookies were pretty good, too.

Keep yourselves as safe as you can during the lock down. Lock down is better than die any day and we are especially open to the virus with our compromised immune systems. Keep that in mind when you start to get restless.

Until next week,

Keep living your life!

Allow Me to Introduce You…

We all know I’m not the only one raising awareness about Chronic Kidney Disease. I’ve posted guest blogs from other writers, those who bring our plight to the attention of the government, manufacturers of products that may help us, and patients and/or donors themselves. But I realize I’m ‘old school.’ There are those who are more comfortable with other forms of social media, such as broadcasting shows. Hopefully, you haven’t seen the two YouTubes I created years ago. For an actor, they are awful. Others are doing a much better job of broadcasting than I can.

One such person is Steve L. Belcher. After I realized I’ve been seeing his name again and again on Facebook, I decided to ask him to guest blog. I certainly learned a lot from his blog and I hope you do, too. This is not a competition among Chronic Kidney Disease awareness advocates, but an informal coalition. We all want you to know as much as you can about this disease we share. Steve’s blog explains the background for all the shows he broadcasts. Kudos, my friend, kudos.

Urban Kidney Alliance, Inc. was founded and created September 2014 as a 501 (c) (3) grassroots nonprofit [Gail here. This has to do with restrictions on lobbying rights.] by Steve L. Belcher, RN, MSN, MS – a former dialysis nurse clinician – as a result of witnessing the lack of resources for kidney patients dialyzing in renal treatment facilities located in urban communities. Many patients undergoing kidney dialysis from urban communities are forced to make hard decisions between purchasing lifesaving medications or food to feed themselves or family members. Urban Kidney Alliance, Inc. initially assisted patients with financial needs for medications, transportation to and from treatment, utilities, and communication devices. Due to the enormous cost of assisting patients and lack of donations, Urban Kidney Alliance could no longer operate under this operational concept.

At this juncture Urban Kidney Alliance, Inc. decided to refocus its mission towards kidney disease education, collaboration, and advocacy. Urban Kidney Alliance, Inc. believes refocusing their mission will have a better impact on reaching communities and individuals at-risk for chronic kidney disease. Urban Kidney Alliance, Inc.’s goal is to reach three million people with their message of kidney disease awareness.

Before the inception of Urban Health Outreach, there was Urban Renal Talk with Tamika & Steve. On October, 2017, Tamika Ganues joined Urban Kidney Alliance, Inc. as Vice President of Operations. During our early beginnings, we began broadcasting Urban Renal Talk with Tamika and Steve from our cellphones to our Facebook Page. The Urban Renal Talk with Tamika and Steve broadcast was created to interview kidney patients and professionals making a difference in the chronic kidney disease community. Since the beginning Urban Renal Talk with Tamika and Steve has come a long way with over four hundred broadcast shows to date. Our shows consist of digital broadcasting, which is the distribution of audio or video content to a dispersed audience via any electronic mass communication medium.

As a result of the overwhelming positive response to Urban Renal Talk with Tamika & Steve, we decided to create a second show directed towards the transplant community called Sunday Morning Transplant Coffee. However, this wasn’t always the case. Our viewership began slowly. Many people haven’t heard of our show and the work we were doing to raise kidney disease awareness and education. The majority of our guests in the beginning were patients sharing their struggles and triumphs with kidney disease. As we began to be consistent with our shows, we were able to schedule and confirm professional guests on the show. Sunday Morning Transplant Coffee Talk was broadcast every Sunday from 11:00 am – 12:00 pm EDT and interviewed guests who were either transplant recipients, transplant donors, or had received a transplant which was later rejected.

January 2019 was the launch and creation of the Urban Health Outreach Media Network on Facebook, a subsidiary of Urban Kidney Alliance, Inc. Urban Health Outreach Media was created to be an online kidney disease education and awareness media broadcasting company to reach more people at-risk and affected by kidney disease globally. Currently, Urban Health Outreach Media broadcasts five shows during the week. The shows are:

The Lisa Baxter Show Sunday 8:00 PM – 8:30 PM

World Kidney News Sunday 9:00 PM – 10:00 PM

Smashing Kidney Disease Tuesday 8:00 PM – 9:00 PM

Warriors Quest Wednesday 8:30 PM – 9:30 PM

Urban Renal Talk with Tamika & Steve Thursday 9:00 PM – 10:00 PM

Kidney Stories 2 first and last Friday of each month from 8:00 PM -9:00 PM EST.

Each show has its own unique style and approach to addressing kidney disease. For example, Warriors Quest gives kidney patients seeking a living kidney donor transplant the opportunity to share their story and transplant hospital information in hopes of finding a donor.

We felt there was a need to create these shows to address the many aspects of kidney disease and the comorbidities associated with it such as diabetes and hypertension. Social media has become a focal point for millions of people to interact and socialize with each other across the country. Urban Kidney Alliance, Inc. wanted to draw on this population with the multiple shows. In addition, the multiple kidney disease groups on Facebook give us another way to disseminate our patient education to patients who undergo in center hemodialysis, home hemodialysis, peritoneal dialysis, and transplantation. Since the start of Urban Health Outreach Media, the shows have lived up to our expectations, yet we still have a long way to go. We measure the success of our shows by the increase in viewership over time.

The author Steve L. Belcher, RN, MSN, MS, DN-CM [Me again: This means Delegating Nurse/Case Manager.], has been affiliated with the kidney dialysis industry for over thirty-three years. He began his career in 1985 as a Patient Care Technician, and – in 1996 – started his career as a Dialysis Staff Nurse. In addition, Steve has worked at many dialysis clinics throughout the United States as a Dialysis Travel Nurse. Today, Steve L. Belcher, RN is the Executive Director of Urban Kidney Alliance, Inc. and resides in Washington, D.C.”

Steve, I salute you for all you do to bring CKD awareness to the rest of us. Thank you.

Saving CKD Lives

Last week, I wrote about Covid-19 and a little about precautions explaining why we – as Chronic Kidney Disease patients – need to take extra care. A reader in Ireland was shocked that this was all we had in the way of protecting ourselves (as much as possible) from contacting the virus here in the United States. The precautions weren’t that much different than the precautions for everyone else.

There are a few things going on here. First is that we have no leadership from Mr. Trump who seems to have decided this is not his responsibility. That leaves us with the governors of each of the fifty United States and, in some cases, the mayors of individual cities in each of these states to lead us. They may have very different ideas.

There is this post I found on Facebook that exemplifies our situation in the U.S. Unfortunately, it is not attributed to anyone. I would love to give credit where credit is due.

“WE ARE NOT IN THE SAME BOAT …

I heard that we are all in the same boat, but it’s not like that. We are in the same storm, but not in the same boat. Your ship could be shipwrecked and mine might not be. Or vice versa.

For some, quarantine is optimal. A moment of reflection, of re-connection, easy in flip flops, with a cocktail or coffee. For others, this is a desperate financial & family crisis.

For some that live alone they’re facing endless loneliness. While for others it is peace, rest & time with their mother, father, sons & daughters.

With the $600 weekly increase in unemployment some are bringing in more money to their households than they were working. Others are working more hours for less money due to pay cuts or loss in sales.

Some families of 4 just received $3400 from the stimulus while other families of 4 saw $0.

Some were concerned about getting a certain candy for Easter while others were concerned if there would be enough bread, milk and eggs for the weekend.

Some want to go back to work because they don’t qualify for unemployment and are running out of money. Others want to kill those who break the quarantine.

Some are home spending 2-3 hours/day helping their child with online schooling while others are spending 2-3 hours/day to educate their children on top of a 10-12 hour workday.

Some have experienced the near death of the virus, some have already lost someone from it and some are not sure if their loved ones are going to make it. Others don’t believe this is a big deal.

Some have faith in God and expect miracles during this 2020. Others say the worst is yet to come.

So, friends, we are not in the same boat. We are going through a time when our perceptions and needs are completely different.

Each of us will emerge, in our own way, from this storm. It is very important to see beyond what is seen at first glance. Not just looking, actually seeing.

We are all on different ships during this storm experiencing a very different journey.”

Let’s take a look at the Chronic Kidney Disease boat to see what I can find out for us. I immediately went to the National Kidney Foundation at https://www.kidney.org/coronavirus/kidney-disease-covid-19. If you’ve read last week’s blog, then you already know we are more vulnerable to Covid-19 and why.

Are there special precautions that someone with kidney disease should take?

Older adults and people with kidney disease or other severe chronic medical conditions seem to be at higher risk for more serious COVID-19 illness. If you are at higher risk of getting very sick from COVID-19, you should:

  • Stock up on supplies
  • Take everyday precautions to keep space between yourself and others
  • When you go out in public, keep away from others who are sick, limit close contact
  • Wash your hands often
  • Avoid crowds as much as possible
  • During an outbreak in your area, stay home as much as possible.

Please remember that if you are on dialysis, you should not miss your treatments. Contact your clinic if you feel sick or have any questions or concerns.

If you have a kidney transplant, it is important to remember to keep taking your anti-rejection medicines, maintain good hygiene and follow the recommendations from your healthcare team. Contact your healthcare team with any questions or concerns….

Should CKD patients wear masks in public?

It is best to stay home, unless you need to attend a dialysis treatment. If you must go out in public, ask your healthcare provider if it is necessary as a CKD patient to wear a face mask since each individual case is different.

The Centers for Disease Control and Prevention (CDC) recommends face masks for those who are infected with COVID-19, have symptoms of COVID-19, or taking care of someone with COVID-19.

The CDC also recommends wearing cloth face coverings to slow the spread of COVID-19 in areas where community-based transmission is significant. These homemade cloth face coverings are not masks and do not replace the President’s Coronavirus Guidelines. (Gail here: As you can see, Trump doesn’t have much more to offer than what we already know. To be fair, this site hasn’t been updated since March 16th, over a month ago. Wait a minute! Why isn’t this site updated daily?)

Tips for using a mask include a snug but comfortable fit covering the bridge of the nose and the entire mouth. Also, be sure to be laundered [sic] the cloth mask after use each outdoor use, ideally without damage to the shape or structure of the mask. … The CDC also recommends coffee filters as an alternative. Use of any mask is in addition to practicing social distancing or at least 6 feet from others to limit coronavirus spread. All patients at high risk, such as immunosuppressed transplant recipients or people receiving dialysis should follow the directions of their clinicians regarding the type of face covering that should be used outside of a clinic setting.

When in public it is important to practice social distancing by staying 6 feet away from other people and to also avoid touching your face. Wash your hands immediately after you have been in public.”

This is still paltry information at best. Emedicine at https://www.emedicinehealth.com/script/main/art.asp?articlekey=228849 gives us just a bit more insight about patients on dialysis according to the CDC:

“The CDC (Centers for Disease Control and Prevention) guidance recommends that for medically stable patients facilities give the option of waiting in a personal vehicle or outside the facility and to be contacted by mobile phone when they are ready to be seen.

  • Dialysis facilities should have space allocated to allow patients who are ill to sit separately from other patients by at least 6 feet.
  • Patients experiencing respiratory symptoms should promptly be taken to appropriate treatment areas to reduce time in waiting areas.
  • For those with symptoms, ideally, dialysis treatment should be provided in a separate room from other patients, with the door closed.
  • If a separate room is not available, the masked patient should be treated at a corner or end-of-row station not near the main traffic flow. A separation of at least 6 feet should be maintained between masked, symptomatic patients and other patients during treatment.
  • Use of hepatitis B isolation rooms should only be considered for patients with respiratory symptoms if the patient has hepatitis B or if no patients treated at the facility have hepatitis B.

Healthcare personnel caring for patients with undiagnosed respiratory infections should further observe standard contact and droplet precautions with eye protection unless a suspected diagnosis such as tuberculosis requires airborne precautions, according to the guidance.

Precautions should include using gloves, facemasks, eye protection, and isolation gowns.”

And transplantees? I am so frustrated by the lack of more concrete information that might be more helpful than that given to non-kidney patients. UNOS (United Network for Organ Sharing) at https://optn.transplant.hrsa.gov/governance/policy-notices/ offers the following information:

COVID-19 Policy Actions Implemented

The table below contains information for actions taken to address OPTN operational issues in the COVID-19 crisis.

Policy Summary Documents & supporting resources Effective date
Policy 1.4.F: Updates to Candidate Data during 2020 COVID-19 Emergency This emergency policy will allow transplant programs to refresh candidate clinical data with data obtained through previous testing in order to maintain current waitlist priority.

This policy prevents candidates who cannot undergo routine testing due to the COVID-19 crisis from being adversely affected on the waitlist.

OPTN Policy Notice March 17, 2020
Policy 3.7.D: Applications for Modifications of Kidney Waiting Time during 2020 COVID-19 Emergency This emergency policy allows transplant programs to submit a waiting time modification application to retroactively initiate waiting time for affected candidates.

This policy prevents potential non-dialysis candidates who meet creatinine clearance or glomerular filtration rate (GFR) criteria from being disadvantaged because they cannot obtain other testing required.

OPTN Policy Notice April 3, 2020
Policy 18.1: Data Submission Requirements
Policy 18.2: Timely Collection of Data
Policy 18.5.A: Reporting Requirements after Living Kidney Donation
Policy 18.5.B: Reporting Requirements after Living Liver Donation
This emergency policy change relaxes requirements for follow-up form submission.

The intent of the policy is to prevent unnecessary exposure risk to transplant recipients and living donors, and also to alleviate data burden for centers in the midst of COVID-19 crisis.

 

Longer blog or not today – and it is much longer – I wish you all would adhere to these conditions. Are they restricting? Possibly. Are they uncomfortable? Could be. Are they lifesaving? It seems they are. Be safe.

Until next week,

Keep living your life!

Saving Lives

Last week, I promised to write about COVID-19 and Chronic Kidney Disease for today’s blog. This topic has touched me personally since one of my daughters was sent to the hospital when it was suspected she’d contacted the virus. Without the COVID-19 test, we still don’t know if she has the virus. We do know she still has the cough. Luckily, an x-ray proved her lungs were clear, so she was sent home with a Z-pack and orders to take Tylenol. No, she doesn’t have CKD, but her treatment at the hospital left me with a lot of questions for those of us who do.

Once again, I’m rushing headlong into the topic. Let’s slow down and start at the beginning. Why is it called COVID-19 anyway? According to the Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/coronavirus/2019-ncov/faq.html,

“On February 11, 2020 the World Health Organization announced an official name for the disease that is causing the 2019 novel coronavirus outbreak, first identified in Wuhan China. The new name of this disease is coronavirus disease 2019, abbreviated as COVID-19. In COVID-19, ‘CO’ stands for ‘corona,’ ‘VI’ for ‘virus,’ and ‘D’ for disease. Formerly, this disease was referred to as ‘2019 novel coronavirus’ or ‘2019-nCoV.’”

There are many types of human coronaviruses including some that commonly cause mild upper-respiratory tract illnesses. COVID-19 is a new disease, caused be [sic] a novel (or new) coronavirus that has not previously been seen in humans. The name of this disease was selected following the World Health Organization (WHO) best practice for naming of new human infectious diseases.”

I don’t know about you, but I want to know about corona viruses. How did they get that name? So I went to Dictionary.com at https://www.dictionary.com/browse/coronavirus where I hoped to find that information. This is what was there.

“any of various RNA-containing spherical viruses of the family Coronaviridae, including several that cause acute respiratory illnesses.”

To be honest, all I understood was that it “causes acute respiratory illnesses.” Like my daughter’s coughing. But why would she be given a Z-pack for that? Healthcare-Online at www.healthcare-online.org/What-Is-A-Z-Pack.html confirmed my belief that antibiotics are for bacterial infections, not viral ones. Curiouser and curiouser.

Drugs.com at https://www.drugs.com/medical-answers/antibiotics-kill-coronavirus-3534867/ had the answer.

“The World Health Organization (WHO) is very clear that antibiotics do not work against viruses, only bacteria, and yet health care providers are using antibiotics in some patients with COVID-19. This is because:

  • Patients with viral pneumonia can develop a secondary bacterial infection that may need to be treated with an antibiotic, although, this complication is reported to be uncommon early on in the course of COVID-19 pneumonia.
  • Also known as Azithromycin, a Z-pack is a medication used for treating serious and severe infections caused by bacteria. It contains macrolide antibiotic, which helps in stopping all forms of growth caused bantibiotic, although, this complication is reported to be uncommon early on in the course of COVID-19 pneumonia.If treatment is required for a secondary bacterial infection then a range of antibiotics can be used such as penicillins (ampicillin plus sulbactam [Unasyn], piperacillin plus tazobactam [Zosyn]), macrolides (azithromycin), cephalosporins (ceftriaxone [Rocephin]), aminoglycosides (tobramycin) and glycopeptides (vancomycin [Vancocin HCL]) for example. Often a combination of two different antibiotics is used.
  • Azithromycin is also thought to have antiviral and anti-inflammatory activity and may work synergistically with other antiviral treatments. In in vitro laboratory studies azithromycin has demonstrated antiviral activity against Zika virus and against rhinoviruses, which cause the common cold.”

Time to deal with CKD when you have COVID-19. I wanted to understand how CKD could make you more vulnerable to this disease. I turned to Prevention at https://www.prevention.com/health/a31245792/coronavirus-high-risk-groups/ for more information.

“People with underlying health conditions are at a higher-than-normal risk of developing severe forms of COVID-19…. When your body is already dealing with a separate health condition, it has less energy to put toward fighting an acute infection…. The CDC says these conditions include:

  • Blood disorders, such as sickle cell disease or taking blood thinners
  • Chronic kidney disease, as defined by your doctor
  • Chronic liver disease, as defined by your doctor
  • Compromised immune system, including undergoing cancer treatment such as chemotherapy or radiation, having received an organ or bone marrow transplant, or taking     high doses of corticosteroids or other immunosuppressant medications, and HIV or AIDS
  • Current or recent pregnancy in the last two weeks
  • Endocrine disorders, such as diabetes
  • Metabolic disorders
  • Heart disease
  • Lung disease, including asthma
  • Neurological and neurologic and neurodevelopment conditions”

This is definitely not a case of misery loves company. Not only do I have CKD, but I am undergoing chemotherapy. Oh, and I have diabetes. To all others in the high risk group, I’m so sorry we all belong to this particular community right now.

Hmmm, do we need to do something more than everyone else needs to do to avoid COVID-19? After spending more time than usual surfing the web, I admit I was surprised that there were no extra precautions other than those for everyone else. What are those you ask? Back to the CDC for their infograph at https://www.cdc.gov/coronavirus/2019-ncov/downloads/COVID19-What-You-Can-Do-High-Risk.pdf which makes it easy for us to understand. It also defines who is higher risk. Unfortunately, it could not be reproduced, so you’ll have to go to the website directly.

I always seem to feel better when I understand what might be a threat to me or anyone in one of my communities. The purpose of today’s blog was to help you understand so that you may also feel better. Make no mistake: This is serious. I only go out to Chemotherapy every other week. Even young, not high risk people from my dancing community are being safe. They are not going out either (unless they are essential workers). Do yourself a favor and save your life by staying in.

Until next week,

Keep living your life!

Lovely, Lovely Medicinal Food

A few weeks ago, I received some interesting emails from a company called Flavis. I hadn’t heard of them before, so I followed my curiosity and emailed back. It turns out they’re a company that produces low protein, potassium, phosphorous, and sodium carbohydrates. Hmmm, as Chronic Kidney Disease patients we need to keep a lid on our intake of these electrolytes. Could this company and others like them help?

They were kind enough to send samples of their wares. Some of it tasted like medicinal food, but oh those cookies. It would be dangerous for me to keep them in the house. My husband, who doesn’t have CKD, loved them, too. I enjoyed their pasta products, too. Now, lest you get the wrong idea, I am not endorsing this company because I don’t know what others like it are available. However, I wanted to know about their products… which may very well be similar to the products of other such companies and, therefore, helpful to CKD patients.

According to my thinking, logically the first thing to do was look at their website. You can find it at http://www.Flavis.com just as I did. I’m going to copy and paste the parts of their Chronic Kidney Disease material that will help us understand more about this product.

“FLAVIS kidney-friendly foods are starch-based and have reduced protein, phosphorus, sodium, and potassium content. They reduce the kidneys’ workload, and they have the same look, taste, and calorie Content as the foods they replace. These products include pasta, rice, bread, bread products (breadsticks, crostini, rolls, sliced bread, crackers), sweets, and flour. They are suitable for patients in all stages of CKD, especially in the conservative management at stage 3-4.”

I have to admit, the bread was not bad at all and, if Bear had liked the taste more, I would have been perfectly happy using only their pasta products. I liked their taste. Unfortunately, I automatically cooked the rice in the electric rice cooker, apparently a no-no, so I can’t say anything about the taste of the rice.

My goodness! I am endorsing Flavis. Why? Look what I found on the National Kidney Foundation website:

FLAVIS and the NKF Team-Up to Promote Kidney Health Through Diet

FLAVIS, the kidney friendly food brand, and the National Kidney Foundation partner to promote medical nutrition therapy to help maintain residual kidney function among chronic kidney disease patients

New York, NY – April 8, 2019 – Dr. Schar USA’s (Lyndhurst, NJ) kidney friendly food brand, FLAVIS is teaming up with the National Kidney Foundation to promote the benefits of special dietary foods for people with chronic kidney disease (CKD). FLAVIS, offering a wide portfolio of kidney friendly breads, pasta, snacks, and baking products provides nutrition solutions for patients following a diet low in protein, phosphorus, sodium and potassium, and support to kidney healthcare professionals. The National Kidney Foundation is the largest, most comprehensive and longstanding patient-centric organization dedicated to the awareness, prevention and treatment of kidney disease.

CKD affects 15% of the U.S. adult population. This disease progresses to higher stages as kidney function declines. Some studies show that medical nutrition therapy (MNT) using a low protein diet, under the direction of a nephrologist and registered dietitian nutritionist (RDN), may slow this decline. Through this partnership, FLAVIS and the National Kidney Foundation will provide educational outreach to healthcare professionals that promotes the importance of MNT and proper nutrition for CKD patients to improve dietary adherence and quality of life.

Medical nutrition therapy for CKD, as implemented by a registered dietitian nutritionist, emphasizes an individualized diet plan based upon each patient’s clinical status, goals, and preferences.  MNT for CKD patients includes one or more of the following: decreased sodium, phosphorus, and protein intake, along with sufficient energy, high fiber, and decreased saturated fat intake.  Potassium may also be restricted if the patient has high serum potassium levels. The benefits of MNT include decreasing the risk of complications from high blood pressure and diabetes, reduced uremic toxin levels, and preserved kidney function over time. Studies of MNT in Americans with CKD have shown only about 10% of those eligible receive this nutrition counseling support. FLAVIS’ products are a good source of energy and fiber, and are low in protein, sodium, phosphorus and potassium. These products may help people with CKD preserve kidney function and improve disease outcomes. In partnering with the National Kidney Foundation, FLAVIS aims to provide education and awareness about the benefits of MNT to promote improved quality of life in the CKD population.  For more information about this partnership visit kidney.org/FLAVIS.

Kidney Disease Facts

In the United States, 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it.  1 in 3 American adults are at risk for chronic kidney disease.  Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, and family history. People of African American, Hispanic, Native American, Asian, or Pacific Islander descent are at increased risk for developing the disease.  African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).”

 

I am happy to have found this. I remember – even though it was a decade ago – how hard it was to adapt my regular diet to the kidney diet and how often I had to respond, “No, thank you,” after asking the ingredients of a certain meal. Thank you Dr. Shar for helping my fellow CKD sufferers and me enjoy guilt free meals when we feel like having pasta.

By the way, I’m not ignoring COVID-19, I assure you. I’m sifting through all the information I can find before I write about it. As you know, that information changes daily. I’ve ordered my masks and searched out my gloves from the garage. I stay at home except when I have to go out for chemotherapy… and those trips concern me.

Until next week,

Keep living your life!

 

National Kidney Month is Almost Over

Welcome to the next to last day of National Kidney Month, 2020. Of course, that doesn’t mean you should stop taking care of your kidneys or spreading Chronic Kidney Disease awareness once National Kidney Month is over, but I don’t have to tell you that, do I? What I’d like to tell you about instead is the ins and outs of National Kidney Month.

In my latest book (Cancer has definitely slowed the arrival of SlowItDownCKD 2019, but soon, my friends, soon.) SlowItDownCKD 2018, I wrote:

“As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month. [Added today: Come to think of it, some readers have asked me where to get CKD ribbons. This is what this site sells among other things.]

‘National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing [sic] with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.’

That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure [Added today: This year’s theme for National Kidney Month is high blood pressure and your kidneys.] or a family history of kidney failure. There are more than 30 million Americans [Added today: 31 million this year] who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed….’

I wanted to share this quote from the American Kidney Fund with you, both as a CKD awareness advocate and a woman:

‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

‘March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.’

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

‘Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.’

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s URL assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.”

This year (2019), I noticed that The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month offers us even more information during National Kidney Month:

“March is National Kidney Month, a time when communities across the country raise awareness about kidney disease. In partnership with the National Heart, Lung, and Blood Institute (NHLBI), this year’s focus is the link between high blood pressure and kidney disease.

If you have high blood pressure, you’re at risk for chronic kidney disease, a serious condition that can lead to stroke, heart attack, kidney failure, and death.

The good news is that you can help protect your kidneys by managing high blood pressure with these 6 healthy lifestyle habits.

  1. Take medications as prescribed.  Your doctor may prescribe blood pressure-lowering medications that are effective in slowing the development of kidney disease.
  2. Aim for a healthy weight. If you are overweight or obese, losing even a small amount of weight can improve blood pressure readings.
  3. Select healthier food and beverage options.  Focus on fruits and vegetables, lean meat, whole grains, and other heart-healthy foods.
  4. Try to quit smoking. If you smoke, take steps to quit.
  5. Get enough sleep. Aim for 7 to 8 hours of sleep per night.
  6. Manage stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day.

Learn more about high blood pressure and kidney disease

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook, Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease awareness.

Until next week,

Keep living your life!

James’s Kidney Transplant Wasn’t Preemptive

Last week, the third week of National Kidney Month, Kevin Fowler told us his story of the journey to his preemptive kidney transplant. This week, the fourth of National Kidney Month, James will tell us of his journey to a non preemptive kidney transplant. In case you were wondering, James and I met at an AAKP meeting in Tampa several years ago and just never lost contact. But let’s allow Uncle Jim (as he prefers to be called) tell his story.

My name is James Myers. I live in Hammond, IN. I am an ESRD & PKD patient. I was lucky enough to have a transplant on April 27th, 2016. I write to you today to tell you my story, as well as my experiences with polycystic kidney disease. At the age of 25, I went into the hospital with chest pain. From a simple x-ray, I was diagnosed with PKD.

I have lost five members of my family to PKD, including my dad. Because of my family’s history, I was immediately referred to Dr. Hellman, a nephrologist at Indiana University Health. He promptly put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every six months and took my medicine. I did the best I could do to stay on the kidney diet. There is no cure for PKD, and at that time, there was very little they could do for me.

I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were colored by my impending death, or so I thought. It was a factor in a failed marriage, a legal career being cut short, and two professorships at two different colleges lost. I loved being with the kids.

Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012. I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a four year stretch on dialysis. My schedule was three days a week, four hours per session.

I was very, very angry when I first went on dialysis. After watching my dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My dad passed after a short five years on dialysis, and I felt I was on the same life path as he. My days were numbered. I observed that many of my clinic mates came to the center by ambulance, were brought in on a gurney, walker, or wheelchair. Many used a cane. Many were diabetic on top of ESRD, and had suffered amputations. Five people were 90 years old or more. One woman was autistic and had the mentality of a 10 year old.

One of my dearest friends, Maureen O’Brien, looked after me. She forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward two MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Every step along the way she had to argue and fight with healthcare officials. She had three transplants. Maureen provided encouragement and a bright, vivid smile. She provided a light on my path.

I began to understand my role. I made a conscious choice. I wanted to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinic mates who could not advocate for themselves. I did not like the way the dialysis clinics, the government, and the care staff pushed around or neglected my fellow Kidney Patients. The last straw for me was when they began to push for the cutting of funds to dialysis patients and clinics. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if i did not accept this responsibility, maybe no one else would.

I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. I spoke frequently. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my dad & Maureen would be proud of me.

I know that many of you are not used to me writing this way. I feel it is my responsibility to lift spirits, so I rarely talk about personal issues anymore. It is my hope to inspire others to likewise advocate for our fellow Kidney Patients. My friend Gail asked me to write my story out. Gail has been very candid with me, so I felt as she advocates for us, I should be just as candid with her & all of you. The point of this Kidney Story is to raise hope and to thank Gail and all of you that advocate for Kidney Patients.

PKD affects approximately 600, 000 Americans and 12.5 million people worldwide. It is one of the most inherited diseases on the planet. Polycystic Kidney Disease is more common than Cystic Fibrosis, Sickle Cell Anemia, Muscular Dystrophy, Hemophilia, Downs Syndrome, and Hodgkins Disease combined. PKD is one of the four leading causes of Kidney Failure. It costs the federal government in excess of $2 Billion annually in Medicare and Medicaid costs for dialysis, transportation and related treatment. There is no cure.

Sincerely,

James Myers
2019 Advocate of the Year for the NKF
BOD and Ambassador for the AAKP
Ambassador for the Chronic Disease Coalition
Ambassador for the NKF of Indiana
Ambassador for the American Kidney Fund
Ambassador for the PKD Foundation
Ambassador for the DPC

Thank you, Uncle Jim, for your generous sharing and even more generous advocacy.

Until next week,
Keep living your life!

Kevin Got His Preemptive Kidney Transplant

Several years ago,  I was invited to a kidney disease meeting. That’s where I first met Kevin Fowler, Principal of The Voice of the Patient, Inc. I liked listening to his ideas. Later, we walked into each other at an AAKP conference. This time I thoroughly enjoyed his company, but had quite a few questions about pre-emptive transplants. Kevin was good enough to explain his story, which answers my questions, in this guest blog during National Kidney Month. Take it away, Kevin! 

Kidney disease has always been a part of my life.  When I was growing up, my mom told me stories about her father who had suffered from Autosomal Polycystic Kidney Disease ( ADPKD), a disease which prompts the growth of cysts on the kidneys. My mom was the oldest of three sisters, and had great love and affection for my grandfather, Hubert Duvall.  I never had a chance to meet him because he died before I was born. It was the late 1950s when he was admitted to the hospital because he was not feeling well. Unknown to him, he was experiencing uremia, the inability of the kidneys to rid themselves of waste products such as urea, as he went into kidney failure. Shortly after his hospital admission he died.  As he neared death, he learned that ADPKD was the cause of his kidney failure. 

My grandfather’s patient journey had a profound impact upon his three daughters: Mary Ann, Ruth, and Laverne in that his genetic disease was passed on to each of them.  My mom, Mary Ann, was diagnosed after the birth of her third child. Imagine the joy of giving birth to a child while being diagnosed with a disease with limited scientific knowledge and a very uncertain future.  My mom and dad faced the unknown with a positive attitude, but with very little professional guidance.

As a young boy, I was very close to my mom.  I felt her unconditional love for me, and her whole life was dedicated to her three children.  As her ADPKD advanced, I saw her suffer with the disease. I saw her experience constant back pain, routine exhaustion and nausea.  All of this physical suffering was difficult to understand as a young child. Moreover, what was really difficult was the look on her face as she faced a nebulous future.

Eventually, my mom’s kidneys failed.  Unlike my grandfather, hemodialysis was available as a treatment option to sustain her life.  She started hemodialysis at the age of 48. While she approached dialysis with optimism, her future was never clear to her or our family.  I saw my mom struggle to survive on dialysis. I saw her return home from dialysis feeling exhausted and tired. I saw that when she had a rough hemodialysis session, it would take her longer to recover from the treatment.  She never bemoaned her fate, and provided us the legacy of her example.

After four and a half years on hemodialysis, my mom died at the age of 52.  Her dialysis experience left an indelible impression upon me. From that point on, I lived in fear that I would face the same fate.  I choose to never determine if I had the same disease. In many ways, it was a rational decision. Interventions were not able to slow down the progression of ADPKD.  If I were diagnosed with ADPKD, I would be penalized. I would face difficulty obtaining health and life insurance. The fear of facing the same patient journey as my mom was always hanging over my head, and I didn’t have the courage to determine if I too had ADPKD.  

I was married to my wife, Kathy, in 1995, and in less than five years we had two children.  During this time, I was being seen by a primary care physician who was aware of my ADPKD family history.  My kidney function was tested on my annual appointments, and he told me that my kidney function was fine. He stated that if I had ADPKD, there was not much that could be done to slow down the progression.  Later that same year near the Christmas season, I experienced deep flank (the side of your body between the bottom rib and the hip) pain. Initially, I attributed it to moving some furniture. The pain persisted, and because of my additional responsibilities as a husband and father, I called my primary care physician requesting an ultrasound test.  The ultrasound test would determine once and for all whether I too had ADPKD.

On a cold and sunny day in January 2001, my physician administered the ultrasound test. Watching his reaction told me all I needed to know.  At the age of 39, I was informed that I would be in kidney failure within the next three to five years. He offered to make a nephrology referral, but I declined.  Since he had not demonstrated competence managing my condition, I intuitively sensed that I could not trust his referral would serve my best interests. 

At that time, I was working in the pharmaceutical industry, so I called a physician friend at Barnes Hospital in St. Louis seeking a nephrology recommendation.  On my mother’s birthday, I met with my nephrologist – who had a profound impact on my life. He informed me that it was not necessary to be on dialysis, and that I could have a preemptive kidney transplant.  Because of my fear, I had never taken the time to learn about the different End Stage Kidney Disease treatment options. I was incredibly fortunate to receive the best treatment option.

On this recently past World Kidney Day, the theme was prevention due to detection.  In the United States approximately 90% of those with Stage 3 Chronic Kidney Disease are unaware of their condition.  This is no longer acceptable. The American Kidney Health Executive Order has initiated a public campaign to detect kidney disease earlier.  In fact, the National Kidney Foundation and CVS Kidney Care launched their public awareness campaign this month, National Kidney Month.  Unlike when I was diagnosed, there are now approved treatments to slow down the progression of kidney diseases.  There are potentially additional treatments in the pipeline for ADPKD, Diabetic Kidney Disease, FSGS, IGAN, etc. For many people there is no longer a need to live in fear.  There is a very real possibility that their patient journey may change for the better.

Thank you, Kevin, for sharing your personal kidney journey with us. Kevin may be reached via email at kevinjohnfowler@gmail.com or on Twitter as @gratefull080504.

 

Until next week,

Keep living your life!

Missing the Connection

During this second week of National Kidney Month, we have another reader directed blog. She had stumbled across The Long Awaited Sulfa Blog and had some questions about it and NAC. Hold on, I’ll get to NAC in a moment. Let’s start with sulfite, which I had always thought was not the same as sulfa. Did our reader mistype? Her verbatim question was, “Have you heard anything about NAC and CKD with sulfite sensitivity?”

According to MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=27721:

“Sulfite sensitivity: Adverse reactions of an allergic nature to sulfites. Sulfites occur in fermentation and also occur naturally in a number of foods and beverages including wine. Sulfites are used for their preservative properties. Sulfite sensitivity occurs most often in asthmatic adults — predominantly women. It is uncommon in preschool children. Adverse reactions to sulfites in nonasthmatics are rare. Sulfite sensitivity reactions range from mild to severe and may include skin, respiratory, or gastrointestinal signs and symptoms. Bronchoconstriction with wheezing is the most common sensitivity response in asthmatics.”

While I do know this reader is a woman, I do not know if she is asthmatic or a wine drinker.

Let’s move along to NAC. Healthline at https://www.healthline.com/nutrition/nac-benefits#section12 (Yes, that is the same Healthline that chose SlowItDownCKD as best kidney blog two years in a row.) tells us, it is N-Acetyl Cysteine and explains what this supplement is and what it can do for you. I added asterisks next to definitions you may need.

“Cysteine is a semi-essential amino acid.

It’s considered semi-essential because your body can produce it from other amino acids, namely methionine and serine. It becomes essential only when the dietary intake of methionine and serine is low.

Cysteine is found in most high-protein foods, such as chicken, turkey, yogurt, cheese, eggs, sunflower seeds and legumes.

N-acetyl cysteine (NAC) is a supplement form of cysteine.

Consuming adequate cysteine and NAC is important for a variety of health reasons — including replenishing the most powerful antioxidant in your body, glutathione. These amino acids also help with chronic respiratory conditions, fertility and brain health.

Here are the top 9 health benefits of NAC.

  1. Essential for Making the Powerful Antioxidant Glutathione

NAC is valued primarily for its role in antioxidant production.

Along with two other amino acids — glutamine and glycine — NAC is needed to make and replenish glutathione.

*Glutathione is one of the body’s most important antioxidants, which helps neutralize free radicals that can damage cells and tissues in your body.

It’s essential for immune health and fighting cellular damage. Some researchers believe it may even contribute to longevity ….

Its antioxidant properties are also important for combatting numerous other ailments caused by oxidative stress, such as heart disease, infertility and some psychiatric conditions….

  1. Helps With Detoxification to Prevent or Diminish Kidney and Liver Damage

NAC plays an important role in your body’s detoxification process.

It can help prevent side effects of drugs and environmental toxins….

In fact, doctors regularly give intravenous (IV) NAC to people with an acetaminophen overdose to prevent or reduce kidney and liver damage ….

NAC also has applications for other liver diseases due to its antioxidant and anti-inflammatory benefits ….

  1. May Improve Psychiatric Disorders and Addictive Behavior

*NAC helps regulate levels of glutamate — the most important neurotransmitter in your brain….

While glutamate is required for normal brain action, excess glutamate paired with glutathione depletion can cause brain damage.

This may contribute to mental health conditions, such as bipolar disorder, schizophrenia, obsessive-compulsive disorder (OCD) and addictive behavior….

For people with bipolar disease and depression, NAC may help decrease symptoms and improve your overall ability to function. What’s more, research suggests that it may play a role in treating moderate to severe OCD ….

NAC supplements can also help decrease withdrawal symptoms and prevent relapse in cocaine addicts ….

  1. Helps Relieve Symptoms of Respiratory Conditions

NAC can relieve symptoms of respiratory conditions by acting as an antioxidant and expectorant, loosening mucus in your air passageways.

As an antioxidant, NAC helps replenish glutathione levels in your lungs and reduces inflammation in your bronchial tubes and lung tissue.

People with chronic obstructive pulmonary disease (COPD) experience long-term oxidative damage and inflammation of lung tissue, which causes airways to constrict — leading to shortness of breath and coughing.

NAC supplements have been used to improve COPD symptoms, exacerbations and lung decline ….

Those with chronic bronchitis can also benefit from NAC.

Bronchitis occurs when the mucous membranes in your lungs’ bronchial passageways become inflamed, swell and shut off airways to your lungs….

By thinning mucus in your bronchial tubes and boosting glutathione levels, NAC may help decrease the severity and frequency of wheezing, coughing and respiratory attacks ….

In addition to relieving COPD and bronchitis, NAC may improve other lung and respiratory tract conditions like cystic fibrosis, asthma and pulmonary fibrosis, as well as symptoms of nasal and sinus congestion due to allergies or infections ….

  1. Boosts Brain Health by Regulating Glutamate and Replenishing Glutathione

NAC’s ability to replenish glutathione and regulate brain glutamate levels can boost brain health.

*The brain neurotransmitter glutamate is involved in a broad range of learning, behavior and memory actions, while the antioxidant glutathione helps reduce oxidative damage to brain cells associated with aging….

Because NAC helps regulate glutamate levels and replenish glutathione, it may benefit those with brain and memory ailments ….

NAC supplements appear to improve both dopamine function and disease symptoms such as tremors ….

  1. May Improve Fertility in Both Men and Women

Approximately 15% of all couples trying to conceive are affected by infertility. In almost half of these cases, male infertility is the main contributing factor ….

Many male infertility issues increase when antioxidant levels are insufficient to combat free radical formation in your reproductive system. The oxidative stress can cause cell death and reduced fertility ….

In some cases, NAC has been shown to improve male fertility….

In addition, NAC may improve fertility in women with polycystic ovary syndrome (PCOS) by inducing or augmenting the ovulation cycle ….

  1. May Stabilize Blood Sugar By Decreasing Inflammation in Fat Cells

High blood sugar and obesity contribute to inflammation in fat tissue.

This can lead to damage or destruction of insulin receptors and put you at a higher risk of type 2 diabetes ….

  1. May Reduce Heart Disease Risk by Preventing Oxidative Damage

Oxidative damage to heart tissue often leads to heart disease, causing strokes, heart attacks and other serious conditions.

NAC may reduce heart disease risk by reducing oxidative damage to tissues in your heart ….

It has also been shown to increase nitric oxide production, which helps veins dilate and improves blood flow. This expedites blood transit back to your heart and can lower your risk of heart attacks ….

  1. Ability to Boost Glutathione Levels May Improve Immune Function

NAC and glutathione also boost immune health.

Research on certain diseases associated with NAC and glutathione deficiency suggests that immune function might be improved — and potentially restored — by supplementing with NAC….

High levels of NAC in your body may also suppress HIV-1 reproduction.

For your body to make the amino acid cysteine, you need adequate amounts of folate, vitamin B6 and vitamin B12. These nutrients can be found in beans, lentils, spinach, bananas, salmon and tuna.

While most protein-rich foods, such as chicken, turkey, yogurt, cheese, eggs, sunflower seeds and legumes, contain cysteine, some people choose to supplement with NAC to increase their cysteine intake.

NAC has low bioavailability as an oral supplement, meaning that it’s not well absorbed. The accepted daily supplement recommendation is 600–1,800 mg of NAC ….”

Okay, I don’t get it. Have I missed something about the connection between sulfite sensitivity and NAC? If you can find what I missed, please let us know.

Ah, if only I could have been more helpful.

Until next week,

Keep living your life!

Dax’s Journey to Dialysis Friendly Clothing

I met Dax Francis a few years ago in a Facebook CKD & Dialysis Support page. Slowly, I became aware that he produces dialysis clothing… and that fascinated me. Then it dawned on me that you should know such clothing exists, although Dax is not the only one who produces them. I asked him if he would write a guest blog explaining how this all started and where he got the idea. He promptly agreed and that will be today’s blog, the first blog in March, National Kidney Month.

Before we read Dx’s blog, some of us may need a reminder of what FSGS is. According to The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693:

“Focal segmental glomerulosclerosis (FSGS) is a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood (glomeruli). FSGS can be caused by a variety of conditions.

FSGS is a serious condition that can lead to kidney failure, for which the only treatment options are dialysis or kidney transplant. Treatment options for FSGS depend on the type you have.”

I think we’re ready for Dax’s guest blog now.

My name is Dax Francis. I was diagnosed with FSGS as a young man, age twelve, and it was as if overnight school, sports, and friends were replaced with doctors, hospitals, and treatments. I struggled to find my place in this new body that could no longer do the things that had defined my life. Shortly after I graduated from high school, I had to begin dialysis which set me down a dark path of loneliness, depression, and sadness.

When I began dialysis I wanted everything to end. This was not the life I had ever wanted, and I believed that all my abilities, my skills, and talents were hidden behind a treatment filled with pain. The strength it took to live in that struggle was too much, and I put myself in situations where everything could have and should have ended. I was lost, and then I got that call saying it was my turn for a kidney transplant.

This was it! This is my moment to start my life! And then FSGS recurred shortly after surgery, and I was never able to leave treatment.

Devastation, utter devastation. I could not let my donor down though and felt a need to try to pursue my life once more despite the struggle. I enrolled in school for Social Work. I wanted to use my experiences to help those who may be in similar situations as myself, and I found my calling. Being able to help others and learn from those with wholly different lives and experiences than mine was the greatest gift I could have ever been given.

As I had all but finished the Social Work program, I realized that I could not be the social worker that people deserved due to my health. Being on treatment three times a week made it difficult to find work, and I rarely felt well enough to continually work. I struggled with this, feeling like I was never going to have a way to be a part of the world and the community nor was a place for me or anyone like me. This fact made me feel worthless and I dropped out of college 6 credits shy of my degree, because I thought it was pointless.

I wandered, confused, and didn’t know how to be someone who could make a difference. The wisdom I had gained from fighting every day to survive, I felt, was something special and I just wanted someone to ask me what I had learned while living in the struggle that is chronic illness. I just wanted someone to take notice of my fight and my struggle and see the person who can make a difference because of it all.

After the passing of a close friend I needed to live for both of us and put myself out there where I met someone who changed my life. I met someone who saw my fight and helped me realize that all I had been through made me capable of so much. She believed in me when I couldn’t believe in myself, this enabled me to live a life that I had always dreamed of, and I was doing it all despite being on dialysis. I was able to meet the love of my life despite the struggle. It all started with putting my true self out there and not being afraid of being that true person sharing with light and love.

I enrolled back in school and finished my 6 credits finally achieving my degree. During this time the world began to change. More and more negativity seemed to be seeping into my life and I found myself in a negative space despite having everything I wanted. I needed to make a change. At the end of 2017 I committed to being positive, uplifting and to helping others the way I can. I started making videos while I was actually on dialysis just to let others know that they were not alone and that they needed to continue their fight.

The support I received from those first videos inspired me to do more with my talents and abilities and Ivye Wear was born on the morning of January 13, 2018. I wanted to provide comfort, warmth, and hope to the warriors fighting every day to survive, often with little recognition of the strength it takes to survive and live in that struggle. I wanted to provide a suit of armor for the warrior when they go into battle; whether it’s dialysis, chemotherapy, infusions, or something else entirely, and I designed comfortable, accessible clothing designed for a range of medical treatments, procedures, and devices. Sweats, Hoodies, and T-Shirts designed for warriors, by warriors. All of our clothes provide zipper access to the vital areas your caregivers need to perform treatment while you can stay warm and dignified.

I never want anyone to feel as if they don’t have a place in this world due to their illness or struggle, Ivye Wear was born to be a beacon of hope for all chronic illness patients. I believe that it is our experiences that give us the strength, wisdom, and patience to change the world.

Thank you, Dax, for your honesty and especially for the dialysis clothing.

Until next week,

Keep living your life!

Meatless Monday and the Rest of the Week, Too

Whoa, baby! Lots and lots of reader interaction lately. One reader even wrote me to thank me for a blog I wrote years ago about sulfa… and here I was wondering if my blogs were being helpful. Thank you all for letting me know they are.

Talking about my blogs being helpful, another reader needs help with her non-animal protein diet. As a child, my brothers and I were cooked meat meals whenever my dad could afford it. I remember Mom cooking lots of hamburgers. That was the first food I learned to cook. As I got older, I realized I didn’t like the fatty taste of meat nor how much it needed to be chewed, so I ate it less and less. Now, since my husband is a meat eater, we have it once a week. He knows I don’t like it, but he does. I eat as much of it as I can before giving the rest to him. It isn’t very much. I think I’m going to learn quite a bit for myself, as well as my reader, in writing today’s blog.

Oster, the makers of the blender I use, at https://www.oster.com/blog/archive/2014/october/5-fruits-and-veggies-that-pack-the-protein.html#?sortby=newest offers us this information:

“1. Avocado 
Like tomatoes, avocados are fruits that are commonly thought of as vegetables. But regardless of how you categorize it, an avocado carries more protein than a glass of milk, about 4 grams according to the United States Department of Agriculture. Although some avoid this fruit because it has a relatively high fat and calorie content, it’s full of a variety of nutrients such as zinc, folic acid, potassium, fiber and healthy fats….

  1. Lentils 
    Legumes are the most protein-rich group of vegetables available. On average, legumes can offer closer to animal products than many other vegetables in how much protein they offer. Among legumes, lentils are one of the highest in protein with about 47 grams of protein per cup, the USDA noted.
  2. Apricots 
    Either raw or dried apricots can add protein to your meals as well as sweetness, though there’s debate over whether fresh or dehydrated is better. Although a raw apricot has more protein, dried apricots have more protein per bite because they’re more compact. Either way, you can’t go wrong. It’s a tasty, sweet way to add protein to your yogurt, oatmeal or other dishes. The USDA explained that 1 cup of sliced apricots has more than 2 grams of protein.
  3. Spinach 
    This tasty leafy green is well known for being nutritious, but did you know it has nearly 3 grams of protein per every 100 grams of spinach, according to the USDA? But eating 100 grams of raw spinach can be hard…. Spinach is also rich in vitamin B6, riboflavin, niacin, vitamin C, a variety of minerals, and has minimal calories and fat.
  4. Soybeans 
    Soybeans pack a walloping 68 grams of protein per cup, according to the USDA. Eat them raw, steam them or roast them for a tasty, protein-filled meal that has more of the nutrient some types of meat [have]. Soybeans are legumes, and also have significant daily amounts of iron, fiber and vitamin K.”

Notice the sentence about potassium in 1. Avocado. Hmmm, do we need to limit or cut out any of these other foods according to the renal diet? I went to SFGATE at https://healthyeating.sfgate.com/lentils-harmful-kidneys-12272.html for some answers.

Are Lentils Harmful to the Kidneys?

Written by Meg Campbell; Updated November 28, 2018

Lentils are nothing but good news for the average person. The small, disc-shaped legumes are a low-fat, cholesterol-free source of high-quality protein, complex carbohydrates and several vitamins and minerals. Lentils are considered a diabetic-friendly, heart-healthy food because their high fiber content promotes normal blood sugar and cholesterol levels. Because they’re also rich in potassium, phosphorus, purines and oxalate, however, lentils aren’t an ideal choice for people affected by chronic kidney problems….

Lentils don’t harm healthy kidneys, just as they don’t damage unhealthy kidneys. Rather, people with chronic kidney problems may need to watch their intake of lentils because their kidneys are less able to adequately process certain nutrients. If you have chronic kidney disease, ask your physician for a detailed diet plan. Eating the right foods can help slow the disease’s progression, according to the Centers for Disease Control and Prevention. Likewise, if you’re prone to kidney stones, talk to your doctor about your diet. Some physicians only recommend limiting purines from animal sources. You also may be able to limit the amount of oxalate you absorb from lentils by consuming them with high-calcium foods.”

So it seems that protein heavy foods can be bothersome for their potassium and phosphorous content. But wait. We are Chronic Kidney Disease patients. We eat according to our labs. If your potassium/phosphorous blood content is in the normal range, you can eat foods containing these electrolytes, but in specified amounts. Ask your renal nutritionist which you can eat and how much of each of these permissible foods you can eat.

 This time I went to NDVTFoods at https://food.ndtv.com/food-drinks/healthy-diet-4-fruits-that-are-relatively-rich-in-protein-2071683. (So many new websites for me today.)

1. Raisins: This humble dried fruit is a fixture in all the festive offerings and is also added to a whole range of desserts. The golden raisins are nothing but de-hydrated or dried grapes.  A 100 gram portion of raisins contains 3 grams of proteins, as per the data by United States Department of Agriculture.

Guava:This Vitamin C-rich fruit is savoured raw or in salads, and is even added to juices and drinks for a flavourful punch. Guava is rich in fibre as a 100 gram portion of the fruit contains 5 grams of it, according to USDA, and the same portion contains 2.6 grams of proteins.

  1. Dates:This sugary sweet fruit has been consumed in Middle-eastern countries as a staple for centuries now. Pitted dates are stuffed with a variety of ingredients and are even consumed in the form of a sweetening paste for milkshakes and baked goods as well. A 100 gram portion of dates contains 2.45 grams of protein, along with 8 grams of fibre, as per data by the United States Department of Agriculture.
  2. Prunes:Another dried fruit that is relatively rich in protein is the prune. These are made by de-hydrating ripened plums and it contains a wide-range of essential minerals and vitamins, along with some important macro-nutrients. This includes 2.18 grams of protein per 100 grams, along with 7 grams of dietary fibre.”

Don’t forget legumes and grains in your non-animal fat protein diet. The same caution about eating according to your labs applies to every category of food you eat. This is not a complete guide to non-animal protein foods and is getting to be a very long blog already. Let me know if you want more information about this topic.

Until next week,

Keep living your life!

Just in Time

I woke up this morning thinking about Audre Lorde. She was the New York State Poet at one time and considered herself a “lesbian, mother, warrior, poet,”but more importantly to me, my writing mentor and friend… and I miss her terribly. Thinking about Audre led me to thinking about my younger daughter (Abby) who won the Black History Month Essay Contest in her elementary school several years in a row by writing about Audre’s and my friendship.

That stopped me for a moment. Audre, Abby, Black History Month. This is Black History Month and it’s half over. Time to write about Black History in Nephrology today.

As Andrea Wurtzburger wrote in People Magazine (I knew there was a reason I grabbed this first each time I waited in one medical office or another.) in the February 13, 2020 issue which was also posted at https://www.yahoo.com/entertainment/black-history-month-explained-started-175250248.html,

Black History Month is an entire month devoted to putting a spotlight on African Americans who have made contributions to our country. Originally, it was seen as a way of teaching students and young people about the contributions of Black and African Americans in school, as they had (and still have) been often forgotten or left out of the narrative of the growth of America. Now, it is seen as a celebration of those who’ve impacted not just the country, but the world with their activism and achievements.”

Now that we know what Black History Month is, let’s see how we can apply it to the field of nephrology. This is what I wrote in SlowItDownCKD 2017 (February 7th) about Dr. Kountz:

“Samuel L. Kountz, M.D was another innovative contributor to Nephrology from the Black Community. As Blackpast.org tells us:

“In 1961 Kountz and Roy Cohn, another leading surgeon, performed the first successful kidney transplant between two people who were close relatives but not twins.  Over the next decade Kountz researched the process of kidney transplants on dogs.  He discovered that monitoring blood flow into the new kidney and administering methylprednisolone to the patient after surgery allowed the body to accept the new organ.

In 1966 Kountz joined the faculty at Stanford University Hospital and Medical School and in 1967 he became the chief of the kidney transplant service at University of California at San Francisco (UCSF).  There he worked with Folker Belzer to create the Belzer kidney perfusion machine.  This innovation kept kidneys alive for 50 hours after being removed from the donor.  Through Kountz’s involvement at UCSF, the institution’s kidney transplant research center became one the best in the country.  Kountz also created the Center for Human Values at UCSF, to discuss ethical issues concerning transplants.”

Kidney News Online at https://www.kidneynews.org/careers/resources/opinion-re-establishing-trust-and-improving-outcomes-in-nephrology introduced me to someone who should be noted in Black History Month in the future since the general public needs to be aware of Chronic Kidney Disease in order to be tested and, ultimately, treated. Dr. Bignall echoes my own thoughts.

“O. N. Ray Bignall II, MD is an Assistant Professor of Pediatrics in the Division of Nephrology at Nationwide Children’s Hospital and The Ohio State University College of Medicine. He is also a member of the American Society of Nephrology’s Policy and Advocacy Committee.

‘To re-establish trust and improve outcomes, we must carry health equity from “the bedside to the curbside.” From research and discovery, to policy and advocacy, nephrologists must engage directly with community members, stakeholders, and lawmakers. Minority communities need to see nephrologists in their schools, houses of worship, block parties, and community centers. We can increase our involvement in community-based participatory research (CBPR) that engages community members in the design, study, and implementation of evidence-based discovery. Nephrologists should also be taking our message to city halls, state houses, and our nation’s Capital to promote kidney disease research and advocacy for all our patients – especially those with disparate outcomes.’ ”

I felt compelled to include Dr. Charles DeWitt Watts who, while not a nephrologist, was eminent in breaking racial barriers so we could have Black nephrologists available to us. The following is from Duke University Medical Center and Library at https://guides.mclibrary.duke.edu/BlackHistoryMonth.

“Dr. Watts spent more than 50 years advocating for civil and human rights and for the quality of medical care for all residents of Durham, especially the poor and underserved. He broke racial barriers when he pushed for certification of black medical students.

First African American to be certified by a surgical specialty board in North Carolina.

Played key role in founding Lincoln Community Health Center, a free standing clinic, which served people regardless of their ability to pay.

Joined the staff of Lincoln Hospital as Chief of Surgery in 1950. Lincoln was one of the few American hospitals at the time that granted surgical privileges to African-American physicians.

Completed his surgical training at Freedman’s Hospital in Washington, DC under the tutelage of Dr. Charles Drew.

Worked to prepare Lincoln’s interns and residents for board certification and convinced Duke University Medical School to oversee Lincoln’s training program so that students could get board certified.

Fought along with other community leaders for the creation of one integrated public health care facility, Durham Regional Hospital, built in Durham in 1967. This led to the closing of both Watts and Lincoln hospitals.

Served as Adjunct Clinical Professor of Surgery at Duke and Director of Student Health at North Carolina Central University.

Served for 28 years as Vice President and Medical Director for North Carolina Mutual Life Insurance Co., the largest African-American managed insurer in the country.

Member of the National Academy of Science’s Institute of Medicine, a fellow in the American College of Surgeons, and an active participant in the National Medical Association.”

Until next week,

Keep living your life!