What’s New?

Here we are in the fourth week of National Kidney Month. I caught myself wondering if I were up to date on anything and everything new in the world of kidney disease. I receive emails every day about this or that happening in the kidney community, but how many of them refer to what’s new? I decided to find out. 

I started with a general search and found quite a bit. Let’s start with this paper which was published on January 5th of this year. Since I’ve just had an expensive new crown made, this one on ScienceDaily caught my eye: 

“Lead author Dr Praveen Sharma, from the Periodontal Research Group at the University of Birmingham’s School of Dentistry, said: ‘This is the first paper to quantify the causal effect of periodontitis on kidney function and vice-versa as well as the first to elucidate the pathways involved. 

It showed that even a modest reduction in gum inflammation can benefit renal function. Given the relative ease of achieving a 10% reduction in gum inflammation, through simple measures like correct brushing techniques and cleaning between the teeth, these results are very interesting.’ ” 

Reminder: periodontis is gum infection which can become so serious that you lose teeth and possibly even affects the bone under your teeth. The ‘dont’ part of the word means teeth, while ‘peri’ means around. By this time in reading the blog, we can figure out that ‘itis’ means inflammation. Keep up the brushing and flossing, folks. This may help you save your kidneys. 

Just a week later, on January 12th, EuerkAlert! announced: 

“While investigating the underlying causes of a rare skin disorder, a researcher at Massachusetts General Hospital (MGH) discovered a previously unknown mechanism in the kidneys that is important for regulating levels of magnesium and calcium in the blood. 

The discovery, described in the journal Cell Reports, highlights the role of a previously little-studied gene called KCTD1. The gene directs production of a protein that regulates the kidney’s ability to reabsorb magnesium and calcium from urine and return it to the bloodstream.” 

According to the U.S. Department of Health and Human Service’s National Institutes of Health’s Office of Dietary Supplements,  

“Magnesium is a nutrient that the body needs to stay healthy. Magnesium is important for many processes in the body, including regulating muscle and nerve function, blood sugar levels, and blood pressure and making protein, bone, and DNA.” 

According to the same agency

“The body needs calcium to maintain strong bones and to carry out many important functions. Almost all calcium is stored in bones and teeth, where it supports their structure and hardness. 

The body also needs calcium for muscles to move and for nerves to carry messages between the brain and everybody part. In addition, calcium is used to help blood vessels move blood throughout the body and to help release hormones and enzymes that affect almost every function in the human body.” 

I remember being flabbergasted upon discovering that the kidneys produce glucose. Can you imagine how my mind is reeling to learn that it also regulates the levels of magnesium and calcium in the blood? Maybe instead of telling me to drink my milk for calcium, my mom should have been telling me to keep an eye on my kidney function… not that we even knew what the kidneys were back then. [By we, I mean my mom and me.] 

But wait, there’s more. [Why do I feel like a 2 a.m. television ad?] Many important discoveries started as experiments with fruit flies. Hopefully, this one announced on January 26th is another of those: 

“In a new paper published in the journal Molecules, alum Cassandra Millet-Boureima (MSc 19) and Chiara Gamberi, affiliate assistant professor of biology, write that melatonin was found to reduce cysts in the renal tubules of fruit flies. These tubules are also found in more complex mammals, including humans, where they are called nephrons. This study, which builds on previous studies by Millet-Boureima and Gamberi, was co-authored by Roman Rozencwaig and Felix Polyak of BH Bioscience in Montreal. 

The researchers hope that their findings can be applied to treating people suffering from autosomal dominant polycystic kidney disease. ADPKD is a genetic chronic and progressive disease characterized by the growth of dozens of cysts in the nephrons. It is incurable and affects approximately 12.5 million worldwide.” 

Thank you to Medical Dialogues for this information. You may need a reminder about ADPKD, so here it is from PDK Foundation

“Autosomal dominant polycystic kidney disease (ADPKD) is one of the most common, life-threatening genetic diseases. In ADPKD, fluid-filled cysts develop and enlarge in both kidneys, eventually leading to kidney failure.” 

May as well define melatonin, too, don’t you think? My favorite dictionary helped us out here: 

“a vertebrate hormone that is derived from serotonin, is secreted by the pineal gland especially in response to darkness, and has been linked to the regulation of circadian rhythms.” 

We are vertebrates, meaning we have a backbone. The pineal gland is sometimes called the third eye, which makes sense now since it responds to darkness, just as our eyes do. 

There are a few more just this year alone, but I think we have room for just one more in today’s blog. 

“Oxygen is essential for human life, but within the body, certain biological environmental conditions can transform oxygen into aggressively reactive molecules called reactive oxygen species (ROS), which can damage DNA, RNA, and proteins. Normally, the body relies on molecules called antioxidants to convert ROS into less dangerous chemical species through a process called reduction. But unhealthy lifestyles, various diseases, stress, and aging can all contribute to an imbalance between the production of ROS and the body’s ability to reduce and eliminate them. The resulting excessive levels of ROS cause ‘oxidative stress,’ which can disrupt normal cellular functions and increase the risk of diseases like cancer, neurodegeneration, kidney dysfunction, and others, which are all accompanied by severe inflammation. 

Since oxidative stress is associated with various serious diseases, its detection within living organs offers a route to early diagnosis and preventive treatment, and is, thus, a matter of considerable interest to scientists working in the field of biomedicine. Recent international collaboration between the Japanese National Institutes for Quantum and Radiological Science and Technology (QST), Bulgarian Academy of Sciences, and Sofia University St. Kliment Ohridski in Bulgaria led to a promising technology for this purpose: a novel quantum sensor. Their work is published in the scientific journal Analytical Chemistry2021.” 

This was from their January 29th press release. Here we have another valuable theory of inquiry. 

My head is swimming. There’s so much new research re keeping our kidneys healthy. 

Until next week, 

Keep living your life! 

National Kidney Month

The world has acknowledged World Kidney Day. We have had walks in many countries. We have had educational seminars in many countries. We have posted in many countries. All to bring awareness to what our kidneys do for us and the worldwide challenge of kidney disease. Thursday, March 11th, was World Kidney Day. 

But today is Monday. And you know what? It’s still March, National Kidney Month, here in the United States. Each year, I write about National Kidney Month, just as I write about World Kidney Day. Interesting tidbit: the Philippines also has a National Kidney Month which they celebrate in June. I’ll only be writing about the U.S.’s National Kidney Day. 

 As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause has a succinct explanation for us. While I’m not endorsing them since I usually try to avoid endorsements, I do want to let you know they sell the green ribbons and wristbands for kidney disease awareness that you’ll probably be seeing hither and yon all month. 

“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 suffering 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. 

National Kidney Month is a time to increase awareness about the function of the kidneys and kidney disease. 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. One in three Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 26 million Americans who already have kidney disease, and most do not know it because there are often no symptoms until the disease has progressed.” 

That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month. This is what I found: 

March 1, 2021, New York, NY — In honor of National Kidney Month which starts today, the National Kidney Foundation’s (NKF) national public awareness campaign, “Are You the 33%?” enters a new phase focusing on the connection between type 2 diabetes (T2D) and kidney disease, also known as chronic kidney disease (CKD). NKF urges everyone to find out if they’re the 1 in 3 at risk for developing kidney disease by taking a one-minute quiz at MinuteForYourKidneys.org

Diabetes is a leading risk factor for developing kidney disease. Over time, having high blood sugar from diabetes can cause damage inside your kidneys. But it doesn’t have to end up this way; because with careful control of glucose (sugar) levels, there is evidence that you can prevent kidney disease in people with diabetes. 

Award-winning actress, Debbie Allen joined the campaign as the T2D Campaign Celebrity Spokesperson in February, Black History Month, to help promote awareness of diabetes as a leading cause for developing chronic kidney disease. Allen has a family history of diabetes and was recently diagnosed with pre-diabetes.” 

Indeed, the National Kidney Foundation has a lot to offer with peer mentoring, community, an information helpline, and transplant, palliative care, dialysis, kidney donation, and research information. 

The American Kidney Fund [AFK] joins in National Kidney Month with their form to pledge to fight kidney disease. I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease.  

If you’re inclined to donate to the cause, the American Kidney Fund is doubling your donation this month. They also offer an advocacy program, as well as free screenings, activity days, financial assistance, and kidney education in addition to transplant and kidney donation information, 

The National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK], part of the National Institutes of Health [NIH], celebrates National Kidney Month with the following post and offerings. 

“Follow these healthy lifestyle tips to take charge of your kidney health. 

  1. Meet regularly with your health care team. Staying connected with your doctor, whether in-person or using telehealth via phone or computer, can help you maintain your kidney health. 
  1. Manage blood pressure and monitor blood glucose levels. Work with your health care team to develop a plan to meet your blood pressure goals and check your blood glucose level regularly if you have diabetes. 
  1. Take medicine as prescribed and avoid NSAIDs like ibuprofen and naproxen. Your pharmacist and doctor need to know about all the medicines you take. 
  1. Aim for a healthy weight. Create a healthy meal plan and consider working with your doctor to develop a weight-loss plan that works for you. 
  1. Reduce 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. 
  1. Make time for sleep. Aim for 7 to 8 hours of sleep per night. 
  1. Quit smoking. If you smoke, take steps to quit. 

It may seem difficult, but small changes can go a long way to keeping your kidneys and you healthier for longer. 

Learn more about managing kidney disease 

As for me, I’ll continue to blog my brains out [just as I declared in last week’s blog] until more and more people are aware of the kidneys and kidney disease. Same goes for the Instagram, Facebook, Twitter, Pinterest, and LinkedIn accounts, and the SlowItDownCKD book series. It’s all about kidney disease. 

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! 

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! 

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!

“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!

 

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!

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!

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!

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!

 

Why Wait?

A few weeks ago, I received an email from Joe Russell. He works on health care policy issues for my Arizona Senator Sinema in Washington D.C., along with his colleague Sylvia Lee, policy advisor. He was letting me know both Sylvia and he would be in Arizona the following week, and holding a roundtable discussion with patients suffering from kidney disease, along with their providers, caregivers, and family members. They wanted to discuss a series of legislative proposals their office would be working on in the coming months, as well as gain a better understanding of the unique challenges patients with kidney disease face in Arizona. The National Kidney Foundation of Arizona recommended they reach out to me, given my work and experience on this topic.

Are you kidding, I thought. I’ve been trying to get someone in Arizona interested in the growth of CKD locally… and, of course, everywhere else, for over 12 years. Now, mind you, by 3:30 I’m exhausted (Damn chemo!), but I vowed to go even though it was later in the day (3 p.m.). And I did.

When I arrived, who did I see sitting at Senator Sinema’s table, but Raymond and Analyn Scott. They are the compilers of The 1 in 9 Tribe to which I had contributed a chapter. There were people from the National Kidney Foundation of Arizona, a transplant patient, my very own nephrologist (who is also Raymond’s) and Senator Sinema’s delegation.

Oh boy, I remember thinking, this is going to be good. And it was. Each person spoke to their own stage of CKD with Dr. DeSai (Raymond’s and my nephrologist) and the National Kidney Foundation of Arizona people speaking about all stages of CKD. I kept steering the discussion back to early stage treatment and awareness for all. It seemed all were in agreement with my ideas or, at least, they were interested.

But I want to let you know why I feel early intervention and general awareness are so important. This is a note I received from a reader.

”Please help. I just got blood results back from my yearly physical and saw that my eGFR was 55 and my creatinine was 1.09. After speaking to my GP she told me my results were nothing to ‘be concerned about’. Since the 2 above mentioned results were highlighted in red I figured perhaps I should ‘concern’ myself about it and research what it could possibly mean. I was shocked to read that it indicated kidney disease. When I told my doctor of my findings, she again pushed it off as nothing to worry about. Am I over reacting? Thanks for any help you can give me.”

Now we don’t know this reader’s age. That’s important because you lose one point off your Glomerular Filtration Rate every year once you hit the age of 40. For example, I turned 73 yesterday (Yes, it was a fun birthday with my family and friends despite the effects of chemo.). Subtract 40 from that and I have lost 33 points off my GFR simply by being alive and growing older. Considering the highest GFR is 120, although we usually use 100 for ease of figuring, my perfect GFR would be 87. But it’s not. It’s 55, so we know I have CKD, stage 3A just like this reader.

Nuts! I’m going on and on as if everyone reading this knew both what GFR is and the stages of CKD. Well, we’ll just correct that right now. According to MedlinePlus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health, at https://medlineplus.gov/ency/article/007305.htm.

Glomerular filtration rate

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

How the Test is Performed

blood sample is needed.

The blood sample is sent to a lab. There, the creatinine level in the blood sample is tested. Creatinine is a chemical waste product of creatine. Creatine is a chemical the body makes to supply energy, mainly to muscles.

The lab specialist combines your creatinine level with several other factors to estimate your GFR. Different formulas are used for adults and children. The formula includes some or all of the following:

  • Age
  • Blood creatinine measurement
  • Ethnicity
  • Gender
  • Height
  • Weight”

Nor do we know the reader’s ethnicity. The National Kidney Foundation at https://www.kidney.org/sites/default/files/docs/12-10-4004_abe_faqs_aboutgfrrev1b_singleb.pdf explains why this is important:

“This is due to higher average muscle mass and creatinine generation rate in African Americans.”

So, why then, is it important to know if you’re only in stage 2 of CKD? Let me put it this way:

When I was first diagnosed with CKD, I was at a GFR of 39. That’s pretty low. Had I been tested earlier, I would have had more time to preserve more of my kidney function. While I’m now at about 55 GFR (just like my reader), it took years and years of hard work as far as diet, exercise, rest, sleep, avoiding anxiety, not drinking or smoking and making sure I paid special attention to my labs.

Imagine if I had known earlier that I had CKD. I could have started protecting my kidneys earlier, which may have meant I could avoid dialysis for longer… or maybe at all. It may have meant I wouldn’t reach the place where I needed a transplant, if I ever needed one.

If you are routinely checked via a blood test and urine test each time you see your family doctor – just like your heart and lungs are checked – you may be able to avoid being told you were in need of dialysis seemingly out of the blue. But you wouldn’t know to ask for these tests unless everyone is made aware of CKD and just how prevalent it is. Think about it.

Until next week,

Keep living your life!

Now That’s Patience.

This is decidedly the month for blogs based upon reader questions. As usual, I first must remind you that I am not a doctor and you need to speak with yours before you take any action. As you know, I had major surgery in September to remove a pancreatic cancer tumor which included removing part of the pancreas, the gall bladder, and the spleen. Since then I’ve been hospitalized twice for complications of this surgery… and this particular reader has waited all this time for answers to her questions. I’m impressed.

Let’s not make her wait one second longer. She is a woman in her 40s who has questions about Chronic Kidney Disease and the menstrual period. Hey, guys, don’t go anywhere. Read today’s blog and you just might be able to offer some insight to your female CKD patient friends who have similar questions.

It seems her period went on and on… for two weeks. Her doctor (not a nephrologist) ordered medications for her, but she wasn’t sure if they were safe for her kidneys. In her country, you cannot simply make an appointment or call your nephrologist. You need to wait, and wait, and wait until you are given an appointment. Of course, her first course of these medications is now long over, but perhaps we can help her if she’s ever in this situation again… or if you are.

The first medication prescribed was Traxan. Don’t worry if that doesn’t ring a bell; I’d never heard of any of these medications before either. According to Drugs.com at https://www.drugs.com/international/traxan.html,

Traxan

Traxan may be available in the countries listed below.

Ingredient matches for Traxan

Tranexamic Acid

Tranexamic Acid is reported as an ingredient of Traxan in the following countries:

  • Philippines”

which makes sense since this particular reader is from the Philippines. This doesn’t tell us much, so let’s try Tranexamic Acid.

WebMD at https://www.webmd.com/drugs/2/drug-32677-1331/tranexamic-acid-oral/tranexamic-acid-650-milligram-tablet-oral/details offers the following information:

“This medication is used to treat heavy bleeding during your menstrual period. Tranexamic acid works by slowing the breakdown of blood clots, which helps to prevent prolonged bleeding. It belongs to a class of drugs known as antifibrinolytics.

Tranexamic acid is not a hormone. It does not treat other menstrual or premenstrual symptoms. It does not stop your period. It is not a form of birth control and does not protect against sexually transmitted diseases.”

And now the biggie: Is this safe if you have CKD? There is not much research on this other than a study with a very small population of only four patients. They did suffer adverse reactions, but three were on dialysis and the fourth had a transplant. The take away from over an hour’s search is that the dosage may have to be modified.

Mefenamic Acid was the second drug prescribed. By the way, the brand name for this drug is Ponstel.

“Mefenamic acid is used to relieve mild to moderate pain, including menstrual pain (pain that happens before or during a menstrual period). Mefenamic acid is in a class of medications called NSAIDs. It works by stopping the body’s production of a substance that causes pain, fever, and inflammation.”

This information was offered by Medline Plus, part of the U.S. National Library of Medicine, which in turn is part of the National Institutes of Health at https://medlineplus.gov/druginfo/meds/a681028.html.

Houston, we have a problem. NSAIDS are something all kidney patients should avoid. I was delighted to happen upon the Curbsiders (a board-certified internists’ group) at https://thecurbsiders.com/podcast/146-nephmadness-pain-meds-in-chronic-kidney-disease who explained the NSAID problem in terms I (and hopefully you) can understand:

NSAIDs in CKD

Mechanism

  • NSAIDs work by inhibiting cyclooxygenase (COX) and thus decreasing prostaglandin synthesis. This reduces the inflammation causing pain.
  • Renal blood flow, particularly in CKD, often depends on prostaglandins and can decrease with NSAID use.
  • Heart failure, cirrhosis, nephrotic syndrome have low effective renal blood flow which relies on prostaglandins. In these patients, NSAIDs may decrease the eGFR.
  • When close to ESRD, you run the risk that a transient decrease in blood flow may still cause an issue…possibly knocking patients onto dialysis.
  • If a patient is already on dialysis and anuric, the adverse effects of NSAIDs are less significant. For those patients still making urine, there are still renal risks.”

Well, what about Mefenamic acid and CKD? Healthline (I simply cannot stop thanking you for those two best kidney disease blog awards!) at https://www.healthline.com/health/mefenamic-acid-oral-capsule#dosage makes no bones about it:

For people with kidney problems: If you have kidney disease, your body might not be able to clear out this drug as well as it should. This may cause increased amounts of mefenamic acid in your blood and increase your risk of side effects. Your doctor may prescribe a decreased dosage.”

Hopefully, a decreased dosage was prescribed.

And, finally, Marvelon. Forgive me, but I instantly thought of Marvel Comics. Actually, Marvelon is birth control. Oh, I wonder if my reader knew that and wanted birth control. Is it safe for CKD patients? Let’s find out together.

“Do not take this medication if you:

  • have diabetes with blood vessel complications (e.g., heart disease, eye disease, kidney disease, foot infections)
  • have very high cholesterol or triglyceride levels”

These are only two of the eighteen warnings I found on MedBroadcast at https://medbroadcast.com/drug/getdrug/marvelon This is a new site for me, so let me share what they have to say about themselves:

“Condition and disease information is written and/or reviewed by the MediResource Clinical Team. The contents of this site are for informational purposes only and are meant to be discussed with your physician or other qualified health care professional before being acted on. Never disregard any advice given to you by your doctor or other qualified health care professional. Always seek the advice of a physician or other licensed health care professional regarding any questions you have about your medical condition(s) and treatment(s).

This site is not a substitute for medical advice. © 1996 – 2020”

Thank you for being so patient, Philippine reader. Remember, talk to your doctor before doing anything.

Until next week,

Keep living your life!

Another Kind of Kidney Disease

While I’m still recuperating, I’ve had plenty of time to read Twitter articles, among other things. One topic I’ve been reading about is lupus nephritis. I think we’ve all heard of lupus, but just in case, here’s a definition from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064.

“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, heart, lungs, kidneys, joints, and nervous system.”

Did you catch the mention of kidneys in the above definition? That’s where the nephritis part of the condition comes in. By now, we’re all probably tired of being reminded that ‘neph’ means relating to the kidneys (although in non-medical terms, it means relating to the clouds) and ‘itis’ means inflammation. Nuts! I just reminded you again. Let’s ignore that. So, lupus nephritis actually means

“… a kidney disorder [which] is a complication of systemic lupus erythematosus.”

Thank you to MedlinePlus at https://medlineplus.gov/ency/article/000481.htm for the definition. Oh, “systemic lupus erythematosus” refers back to autoimmune disease. Still, the word “erythematosus” puzzled me. I finally figured it out after realizing I probably wasn’t going to get a definition since almost all the entries were for lupus erythematosus. Remember, I studied Greek & Latin roots way, way back in college. It means red and is from the Greek. I get it. Sometimes, lupus patients have a red rash in butterfly form across their face.

So, how do you develop this particular kidney disease? What better place to find out than Lupus.org at https://www.lupus.org/resources/how-lupus-affects-the-renal-kidney-system#.

“Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body.”

Hmmm, no lupus equals no lupus nephritis. However, if you do have lupus, you may develop lupus nephritis.

Let’s say hypothetically that you or a loved one (or even your neighbor down the block) has lupus and is concerned about developing lupus nephritis. How would they know if they were developing it? I had to look no further than the National Kidney Foundation at https://www.kidney.org/atoz/content/lupus.

“Lupus nephritis can cause many signs and symptoms and may be different for everyone. Signs of lupus nephritis include:

  • Blood in the urine (hematuria): Glomerular disease can cause your glomeruli to leak blood into your urine. Your urine may look pink or light brown from blood.
  • Protein in the urine (proteinuria): Glomerular disease can cause your glomeruli to leak protein into your urine. Your urine may be foamy because of the protein.
  • Edema: Having extra fluid that your kidneys cannot remove that causes swelling in body parts like your legs, ankles, or around your eyes.
  • Weight gain: due to the fluid your body is not able to get rid of.
  • High blood pressure

I know these may also be the symptoms of Chronic Kidney Disease, but if you have lupus, then they may be symptoms of lupus nephritis. To make things even more complicated, there are five different kinds of lupus nephritis depending upon which part of the kidney is affected.

I was wondering about tests to diagnose lupus nephritis, like we have blood and urine tests to diagnose CKD. Healthline (Now do you see why I was so thrilled to receive their Best Kidney Blogs Award two years in a row?) at https://www.healthline.com/health/lupus-nephritis#diagnosis cleared that up.

Blood tests

Your doctor will look for elevated levels of waste products, such as creatinine and urea. Normally, the kidneys filter out these products.

24-hour urine collection

This test measures the kidney’s ability selectively to filter wastes. It determines how much protein appears in urine over 24 hours.

Urine tests

Urine tests measure kidney function. They identify levels of:

  • protein
  • red blood cells
  • white blood cells

Iothalamate clearance testing

This test uses a contrast dye to see if your kidneys are filtering properly.

Radioactive iothalamate is injected into your blood. Your doctor will then test how quickly it’s excreted in your urine. They may also directly test how quickly it leaves your blood. This is considered to be the most accurate test of kidney filtration speed.

Kidney biopsy

Biopsies are the most accurate and also most invasive way to diagnose kidney disease. Your doctor will insert a long needle through your abdomen and into your kidney. They’ll take a sample of kidney tissue to be analyzed for signs of damage.

Ultrasound

Ultrasounds use sound waves to create a detailed image of your kidney. Your doctor will look for anything abnormal in the size and shape of your kidney.

Yes, I know these are the same tests that are used to diagnose CKD, but if you have lupus, they also can diagnose lupus nephritis.

Okay, now the biggie: How do you treat it if you do have it? The MayoClinic at  https://www.mayoclinic.org/diseases-conditions/lupus-nephritis/diagnosis-treatment/drc-20446438 had some sobering news for us:

“There’s no cure for lupus nephritis. Treatment aims to:

  • Reduce symptoms or make symptoms disappear (remission)
  • Keep the disease from getting worse
  • Maintain remission
  • Avoid the need for dialysis or a kidney transplant

Conservative treatments

In general, doctors may recommend these treatments for people with kidney disease:

  • Diet changes. Limiting the amount of protein and salt in your diet can improve kidney function.
  • Blood pressure medications. Drugs called angiotensin-converting enzyme (ACE) inhibitors and angiotensin II receptor blockers (ARBs) can help control blood pressure. These drugs also prevent protein from leaking from the kidneys into the urine. Drugs called diuretics can help you get rid of excess fluid.

However, conservative treatment alone isn’t effective for lupus nephritis.

Immune suppressants

For severe lupus nephritis, you might take drugs that slow or stop the immune system from attacking healthy cells, such as:

  • Steroids, such as prednisone
  • Cyclosporine
  • Tacrolimus
  • Cyclophosphamide
  • Azathioprine (Imuran)
  • Mycophenolate (CellCept)
  • Rituximab (Rituxan)

When immunosuppressive therapies don’t lead to remission, clinical trials may be available for new therapies.

Treatment options for kidney failure

For people who progress to kidney failure, treatment options include:

  • Dialysis. Dialysis helps remove fluid and waste from the body, maintain the right balance of minerals in the blood, and manage blood pressure by filtering your blood through a machine.
  • Kidney transplant. You may need a new kidney from a donor if your kidneys can no longer function.”

Help! Running out of room (but we’re done anyway),

Until next week,

Keep living your life!

Is it Blood Sugar or the Pancreas?

We all know diabetes raises your risk of developing Chronic Kidney Disease. But why? What’s the mechanism behind the fact? As far as I’m concerned, it’s time to find out.

Let’s start with diabetes. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), which in turn is part of The U.S. Department of Health and Human Services at https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes offers this explanation.

“Diabetes is a disease that occurs when your blood glucose, also called blood sugar, is too high. Blood glucose is your main source of energy and comes from the food you eat. Insulin, a hormone made by the pancreas, helps glucose from food get into your cells to be used for energy. Sometimes your body doesn’t make enough—or any—insulin or doesn’t use insulin well. Glucose then stays in your blood and doesn’t reach your cells.

Over time, having too much glucose in your blood can cause health problems. Although diabetes has no cure, you can take steps to manage your diabetes and stay healthy.

Sometimes people call diabetes ‘a touch of sugar’ or ‘borderline diabetes.’”

Having just had a tumor removed from my pancreas, I’m well aware that it produces insulin as well as digestive enzymes. Without a pancreas to produce insulin, you would need insulin injections several times a day.

I got what diabetes is, but how it causes CKD was still not clear.

Well, not until I read the following from The American Diabetes Association at https://www.diabetes.org/diabetes/complications/kidney-disease-nephropathy.

“When our bodies digest the protein we eat, the process creates waste products. In the kidneys, millions of tiny blood vessels (capillaries) with even tinier holes in them act as filters. As blood flows through the blood vessels, small molecules such as waste products squeeze through the holes. These waste products become part of the urine. Useful substances, such as protein and red blood cells, are too big to pass through the holes in the filter and stay in the blood.

Diabetes can damage this system. High levels of blood sugar make the kidneys filter too much blood. All this extra work is hard on the filters. After many years, they start to leak and useful protein is lost in the urine. Having small amounts of protein in the urine is called microalbuminuria.

When kidney disease is diagnosed early, during microalbuminuria, several treatments may keep kidney disease from getting worse. Having larger amounts of protein in the urine is called macroalbuminuria. When kidney disease is caught later during macroalbuminuria, end-stage renal disease, or ESRD, usually follows.

In time, the stress of overwork causes the kidneys to lose their filtering ability. Waste products then start to build up in the blood. Finally, the kidneys fail. This failure, ESRD, is very serious. A person with ESRD needs to have a kidney transplant or to have the blood filtered by machine (dialysis).”

Hmmm, now that we know what diabetes is and how it can cause CKD, maybe we need to look at ways to attempt to avoid diabetes.

  • Losing weight and keeping it off. Weight control is an important part of diabetes prevention. You may be able to prevent or delay diabetes by losing 5 to 10 percent of your current weight. For example, if you weigh 200 pounds, your goal would be to lose between 10 to 20 pounds. And once you lose the weight, it is important that you don’t gain it back.
  • Following a healthy eating plan. It is important to reduce the amount of calories you eat and drink each day, so you can lose weight and keep it off. To do that, your diet should include smaller portions and less fat and sugar. You should also eat a variety of foods from each food group, including plenty of whole grains, fruits, and vegetables. It’s also a good idea to limit red meat, and avoid processed meats.
  • Get regular exercise. Exercise has many health benefits, including helping you to lose weight and lower your blood sugar levels. These both lower your risk of type 2 diabetes. Try to get at least 30 minutes of physical activity 5 days a week. If you have not been active, talk with your health care professional to figure out which types of exercise are best for you. You can start slowly and work up to your goal.
  • Don’t smoke. Smoking can contribute to insulin resistance, which can lead to type 2 diabetes. If you already smoke, try to quit.
  • Talk to your health care provider to see whether there is anything else you can do to delay or to prevent type 2 diabetes. If you are at high risk, your provider may suggest that you take one of a few types of diabetes medicines.”

This is a list from NIH: National Institute of Diabetes and Digestive and Kidney Diseases posted on MedLinePlus at https://medlineplus.gov/howtopreventdiabetes.html. Notice it’s mentioned that this is for type 2 diabetes.

There are 11 different kinds of diabetes. Types 1 and 2 are the most common. WebMD at https://www.webmd.com/diabetes/guide/types-of-diabetes-mellitus#1 explains what type 1 and 2 are.

Type 1 diabetes is an autoimmune condition. It’s caused by the body attacking its own pancreas with antibodies. In people with type 1 diabetes, the damaged pancreas doesn’t make insulin…. With Type 2 diabetes, the pancreas usually produces some insulin. But either the amount produced is not enough for the body’s needs, or the body’s cells are resistant to it. Insulin resistance, or lack of sensitivity to insulin, happens primarily in fat, liver, and muscle cells.”

This is all starting to make sense.

Until next week,

Keep living your life!

HIV and CKD

Every morning, although I don’t have enough energy yet to create original posts, I peruse the Facebook Chronic Kidney Disease pages, Twitter, Instagram, and even LinkedIn for current information about CKD. I was surprised to see a post seeming to claim that Human Immunodeficiency Virus (HIV) can cause CKD. How had I never heard about this before?

As usual when I don’t know or understand something, I decided to investigate. My first stop was The National Institutes of Health at https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/26/99/hiv-and-kidney-disease.

  • “The kidneys are two fist-sized organs in the body that are located near the middle of the back on either side of the spine. The main job of the kidneys is to filter harmful waste and extra water from the blood. (We know that already.)
  • Injury or disease, including HIV infection, can damage the kidneys and lead to kidney disease.
  • High blood pressure and diabetes are the leading causes of kidney disease. In people with HIV, poorly controlled HIV infection and coinfection with the hepatitis C virus (HCV) also increase the risk of kidney disease.
  • Some HIV medicines can affect the kidneys. Health care providers carefully consider the risk of kidney damage when recommending specific HIV medicines to include in an HIV regimen.
  • Kidney disease can advance to kidney failure. The treatments for kidney failure are dialysis and a kidney transplant. Both treatments are used to treat kidney failure in people with HIV.”

Well, I knew there was a possibility of Acute Kidney Injury (AKI) leading to CKD, but HIV? What’s that? Oh, sorry, of course I’ll explain what HIV is. Actually, it’s not me doing the explaining, but the Center for Disease Control (CDC) at https://www.cdc.gov/hiv/basics/whatishiv.html.

“HIV stands for human immunodeficiency virus. It is the virus that can lead to acquired immunodeficiency syndrome or AIDS if not treated. Unlike some other viruses, the human body can’t get rid of HIV completely, even with treatment. So once you get HIV, you have it for life.

HIV attacks the body’s immune system, specifically the CD4 cells (T cells), which help the immune system fight off infections. Untreated, HIV reduces the number of CD4 cells (T cells) in the body, making the person more likely to get other infections or infection-related cancers. Over time, HIV can destroy so many of these cells that the body can’t fight off infections and disease. These opportunistic infections or cancers take advantage of a very weak immune system and signal that the person has AIDS, the last stage of HIV infection.

No effective cure currently exists, but with proper medical care, HIV can be controlled. The medicine used to treat HIV is called antiretroviral therapy or ART.  If people with HIV take ART as prescribed, their viral load (amount of HIV in their blood) can become undetectable. If it stays undetectable, they can live long, healthy lives and have effectively no risk of transmitting HIV to an HIV-negative partner through sex. Before the introduction of ART in the mid-1990s, people with HIV could progress to AIDS in just a few years. Today, someone diagnosed with HIV and treated before the disease is far advanced can live nearly as long as someone who does not have HIV.”

So, it’s not only HIV itself that can cause CKD, but also the drugs used to treat HIV.

The National Kidney Foundation at https://www.kidney.org/atoz/content/hiv-and-chronic-kidney-disease-what-you-need-know  offers some ideas about how to avoid CKD if you have HIV:

“Many people with HIV do not get kidney disease or kidney failure. Talk to your health care provider about your chances of getting kidney disease. If you have HIV, you can lower your chances by:

  • Checking your blood pressure as often as your doctor recommends and taking steps to keep it under control
  • Taking all your HIV medications as prescribed
  • Asking your doctor about HIV drugs that have a lower risk of causing kidney damage
  • Controlling your blood sugar if you have diabetes
  • Taking medicines to control your blood glucose, cholesterol, anemia, and blood pressure if your doctor orders them for you
  • Asking your doctor to test you for kidney disease at least once each year if you:
    • Have a large amount of HIV in your blood
    • Have a low level of blood cells that help fight HIV (CD4 cells)
    • Are African American, Hispanic American, Asian, Pacific Islander, or American Indian
    • Have diabetes, high blood pressure, or hepatitis C”

It seems to me that avoiding CKD if you have HIV is almost the same as taking care of your CKD if you didn’t have HIV, except for the specific HIV information.

I now understand why it’s so important to take the hepatitis C vaccine. I turned to UpToDate at https://www.uptodate.com/contents/treatment-of-chronic-hepatitis-c-virus-infection-in-the-hiv-infected-patient for further information about hepatitis C and HIV.

“The consequences of hepatitis C virus (HCV) infection in HIV-infected patients are significant and include accelerated liver disease progression, high rates of end-stage liver disease, and shortened lifespan after hepatic decompensation, in particular among those with more advanced immunodeficiency …. In the era of potent antiretroviral therapy, end-stage liver disease remains a major cause of death among HIV-infected patients who are coinfected with HCV ….”

Remember that drugs leave your body via either your liver or kidneys. If your kidneys are already compromised by HIV or the medications used to treat your HIV, you need a high functioning liver. If your liver is compromised by hepatitis C, you need high functioning kidneys. I was unable to determine just what high functioning meant as far as your kidneys or liver, so if you find out, let us know.

Please be as careful as possible to avoid HIV, and if you do have it, pay special attention to being treated for it. I’d like it if you were one of the people who is “diagnosed with HIV and treated before the disease is far advanced [so that you] can live nearly as long as someone who does not have HIV.”

Until next week,

Keep living your life!

Zap!

To my surprise, hair started growing back in unexpected places after I finished chemotherapy. One place was my face. My face! And quite a bit of it, more than a bearded person would have. At least, that’s how it looked to me. I was surprised no one mentioned it to me, but supposed they were just glad I was still alive. I wasn’t worried. I’d just use laser hair removal… or would I? I do have Chronic Kidney Disease.

What did that mean as far as the laser hair removal? I remembered from when I’d had it done on the mustache area about seventeen years ago that it doesn’t work on white hair. No problem with this currently. This facial hair was growing in black and thick.

My goodness, you’d think I’d just be thankful to be alive at this point, too. But as is often attributed to Mr. Shakespeare, “Vanity, thy name is woman.” (Actually, he wrote “Frailty, thy name is woman,” but no one seems to remember that.) So, time to explore what CKD limits there are with laser hair removal.

Let’s start at the beginning with what it is. WebMD at https://www.webmd.com/beauty/laser-hair-removal#1  explained it this way:

“Laser hair removal is one of the most commonly done cosmetic procedures in the U.S. It beams highly concentrated light into hair follicles. Pigment in the follicles absorb the light. That destroys the hair.”

Just in case you need reminders,

“A hair follicle is a tunnel-shaped structure in the epidermis (outer layer) of the skin. Hair starts growing at the bottom of a hair follicle. The root of the hair is made up of protein cells and is nourished by blood from nearby blood vessels.

As more cells are created, the hair grows out of the skin and reaches the surface. Sebaceous glands near the hair follicles produce oil, which nourishes the hair and skin.”

Thank you to Healthline at https://www.healthline.com/health/hair-follicle#anatomy for that information. Notice I specified hair follicles since there are other kinds of follicles.

What else might we need defined. Oh yes, pigment. I used the definition of pigmentation instead since it was less convoluted to my way of thinking. The ‘ation’ part just means the action or process of whatever we’re discussing – in this case pigment. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=9681  tells us it’s:

“The coloring of the skin, hair, mucous membranes, and retina of the eye. Pigmentation is due to the deposition of the pigment melanin, which is produced by specialized cells called melanocytes.”

Now, the limitations with CKD – if any. In the last 17 years, I’ve learned that not only wouldn’t white hair respond to laser hair removal, but gray and blonde won’t either. It will also be less effective on red hair. It all has to do with your melanin.

Whoa! This was unexpected. I not only did NOT find any research warning about CKD and laser hair removal, but found some that endorsed it. For instance, The National Center for Biotechnology Information (NCBI), which is part of the U.S. National Library of Medicine, which in turn is part of the National Institutes of Health, which is connected to PubMed at https://www.ncbi.nlm.nih.gov/pubmed/30005102.

“Laser hair reduction is a well-established modality for a wide range of medical indications. Laser hair reduction can be beneficial for hemodialysis patients who undergo repeated adhesive tape application and removal at their hemodialysis site during hemodialysis sessions. There is a paucity of published literature on efficacious laser hair removal treatments for hemodialysis patients. Herein, we present a case of a 50-year-old male (Fitzpatrick III) with end-stage renal disease on hemodialysis, who achieved successful laser hair reduction at his hemodialysis vascular access site with five sessions of a neodymium:yttrium-aluminium-garnet (Nd:YAG) laser (1064 nm) to improve his quality of life by reducing the hair burden at the adhesive tape site application. We recommend providing this safe and effective hair reduction treatment option for hemodialysis patients given the decreased quality of life associated with end stage renal disease and hemodialysis. J Drugs Dermatol. 2018;17(7):794-795.”

Let me translate the medicalese. This abstract means that using laser hair removal around the patient’s access site for dialysis made his life easier (and less painful) since the tape wasn’t sticking to his arm hair anymore. We all know how painful taking off adhesive anything can be if body hair is involved.

I have dug around in my computer for hours and hours. That’s all I found about laser hair removal and Chronic Kidney Disease. That’s the great thing about keeping an open mind; you find some unexpected information.

Here’s hoping you had a fun Halloween and didn’t eat too much candy, especially if you’re diabetic.

Talking about food, are you aware of Mrs. Dash’s seasonings for use instead of salt? It’s come to the point where I can taste even a teeny bit of salt. After almost a decade of not using salt, I’ve lost my taste for it… but Mrs. Dash? How does lemon pepper seasoning sound to you? Or garlic and herb? There are about 28 different flavors of seasoning. Go to the website at https://www.mrsdash.com/ to see for yourself. They also make marinades which was news to me. I usually choose the less spicy seasonings, but they have some zingers that you spicy food loving CKD patients will probably enjoy more.

Until next week,

Keep living your life!

 

Gee, That Smells Nice

Decades ago, when I was a newlywed and still in college, we lived on East 90th Street in New York City. The neighborhood was old; the building was old. It was old enough to have that odor, the one New Yorkers are still arguing about. One group says it’s dead rats in the walls; the other says it’s feline urine that’s built up over the years. It was pretty rank.

At that time, I was a wannabe hippie, so I did what all the wannabe hippies did. I lit incense. It was powerful and it smelled nice. Opening the windows wasn’t a helpful option since this was a dumb belle apartment and people had been throwing garbage out the windows and down into the little airspace the shape of the apartment created for over a hundred years.

They’d been throwing it out the back windows, too. Nobody wanted to walk their garbage down the five flights from where I lived. What about the front windows, you ask. If you didn’t mind car exhaust smoke or the shrills of children playing in the street, that would have been okay. I liked the sound of the children, but it didn’t help me study.

We finally figured out this was not the best place for us to live, so we moved to an apartment in Forest Hills, a neighborhood in Queens. It smelled nice there. Our three windows opened on to a courtyard belonging to the apartment building behind us. There were trees and bushes galore. But we still lit incense. By this time, my then husband was a wannabe hippie right along with me.

I moved a lot in those years: New Rochelle in Westchester, Park Slope in Brooklyn, and Stapleton Heights in Staten Island. In each new home, I lit incense more from habit than anything else.

Finally, I moved to Arizona and kept all ten windows in my home open throughout the fall, winter, and spring. But in the summer with its extreme heat, they had to be closed…. So what did I do? That’s right; I burned incense. Never once did I consider this might be some sort of health hazard.

Now I have pancreatic cancer which I know is caused by the ATM gene and, in my case, is hereditary (Stop laughing, please. That really is the name of the gene.) But I also have Chronic Kidney Disease. I got to wondering if there’s any connection between the incense burning and the fact that I have CKD. So, I decided to explore that possibility.

But first, let me tell those who may not know just what incense is. Dictionary.com at https://www.dictionary.com/browse/incense has a nice, easy definition:

  1. “an aromatic gum or other substance producing a sweet odor when burned, used in religious ceremonies, to enhance a mood, etc.
  2. the perfume or smoke arising from such a substance when burned.
  3. any pleasant perfume or fragrance.”

I popped over to The National Center for Biotechnology Information (NCBI), which is part of the
US National Library of Medicine
, which in turn is part of the National Institutes of Health, which is connected to PubMed at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325774/. Why? Because I remembered reading something about incense on this site. I know, I know. I freely admit I have weird reading habits, but remember: I’m retired. I can indulge in anything that catches my fancy now… including reading weird, seemingly random articles. Anyway, this is what I learned from this study of daily incense burning by Chinese CKD patients in Singapore.

“Our study provides epidemiological evidence that long-term exposure to domestic incense smoke may contribute to the risk of ESRD in the general populations. We acknowledge the lack of information on kidney function at baseline as a limitation in our study, and recommend that the findings be corroborated by future studies that can demonstrate the deterioration in kidney function with time in incense users. Given the worldwide prevalence of incense burning, our finding has substantial public health implications. We advocate implementing strategies to reduce exposure to the emissions from domestic incense and educating the public about the importance of improving ventilation with the use of incense.”

This is no surprise if you’re thinking logically, but then again, who thinks about incense? Although I’ll bet you’ll be doing a little bit more thinking about it now. There are some problems here, though.

  1. I’m not Chinese.
  2. I don’t live in Singapore.
  3. I don’t burn incense on a daily basis.

Hmmm, let’s see if I can find anything else. While not specific to CKD, Healthline at https://www.healthline.com/health/is-incense-bad-for-you#bottom-line did have concerns.

“Incense has been used for thousands of years with many benefits. However, studies are showing incense can possibly pose dangers to health.

Incense isn’t officially deemed a major public health risk comparable to smoking tobacco. Correct use to minimize risks hasn’t yet been explored. Neither has the extent of its dangers been explored, since studies thus far are limited.

Reducing or limiting incense use and your exposure to the smoke may help lower your risk. Opening windows during or after use is one way to reduce exposure.

Otherwise, you can explore alternatives to incense if you’re concerned about the risks.”

I intend to open the windows the next time I use incense to cover that darned chemo smell I’m still emitting. Consider opening the windows the next time you choose to use incense, if you do.

Time for a little gratitude here. You know I’ve been dealing with pancreatic cancer since last March. During this time period, I’ve been invited to present at a conference in Tokyo, participate in both a radio show and a newspaper article, and be a member of a think tank in New Jersey. To be honest, I hadn’t realized how much physical energy I put into my CKD awareness outreach. While I had to answer, “Not this year. Please keep me in mind for next year,” I am thankful for these opportunities.

Until next week,

Keep living your life!

Sodium Bicarbonate, Anyone?

I belong to a number of social media Chronic Kidney Disease support groups. Time and time again, I’ve seen questions about sodium bicarbonate use. I never quite understood the answers to members’ questions about this. It’s been years, folks. It’s time for me to get us some answers.

My first question was, “What is it used for in conjunction with CKD?” Renal & Urology News at https://www.renalandurologynews.com/home/conference-highlights/era-edta-congress/sodium-bicarbonate-for-metabolic-acidosis-slows-ckd-progression/ had a current response to this. Actually, it’s from last June 19th.

“Sodium bicarbonate treatment of metabolic acidosis in patients with chronic kidney disease (CKD) improves renal outcomes and survival, researchers reported at the 56th European Renal Association-European Dialysis and Transplant Association Congress in Budapest, Hungary.

In a prospective open-label study, patients with CKD and metabolic acidosis who took sodium bicarbonate (SB) tablets were less likely to experience a doubling of serum creatinine (the study’s primary end point), initiate renal replacement therapy (RRT), and death than those who received standard care (SC).”

It may be current but what does it mean? Let’s start with metabolic acidosis. Medline Plus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health at https://medlineplus.gov/ency/article/000335.htm explains it this way:

“Metabolic acidosis is a condition in which there is too much acid in the body fluids.”

But why is there “too much acid in the body fluid?”

I like the simply stated reason I found at Healthline (https://www.healthline.com/health/acidosis), the same site that deemed SlowItDownCKD among the Best Six Kidney Disease Blogs for 2016 and 2017.

“When your body fluids contain too much acid, it’s known as acidosis. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance. Many of the body’s processes produce acid. Your lungs and kidneys can usually compensate for slight pH imbalances, but problems with these organs can lead to excess acid accumulating in your body.”

In case you’ve forgotten, pH is the measure of how acid or alkaline your body is. So, it seems that when the kidneys (for one organ) don’t function well, you may end up with acidosis. Did you know the kidneys played a part in preventing metabolic acidosis? I didn’t.

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/263834.php in an attempt to find out if metabolic syndrome has any symptoms. By the way, AHA refers to the American Heart Association.

“According to the AHA, a doctor will often consider metabolic syndrome if a person has at least three of the following five symptoms:

  1. Central, visceral, abdominal obesity, specifically, a waist size of more than 40 inches in men and more than 35 inches in women
  2. Fasting blood glucose levels of 100 mg/dL or above
  3. Blood pressure of 130/85 mm/Hg or above
  4. Blood triglycerides levels of 150 mg/dL or higher
  5. High-density lipoprotein (HDL) cholesterol levels of 40 mg/dL or less for men and 50 mg/dL or less for women

Having three or more of these factors signifies a higher risk of cardiovascular diseases, such as heart attack or stroke, and type 2 diabetes.”

Well! Now we’re not just talking kidney (and lung) involvement, but possibly the heart and diabetes involvement. Who knew?

Of course, we want to prevent this, but how can we do that?

“You can’t always prevent metabolic acidosis, but there are things you can do to lessen the chance of it happening.

Drink plenty of water and non-alcoholic fluids. Your pee should be clear or pale yellow.

Limit alcohol. It can increase acid buildup. It can also dehydrate you.

Manage your diabetes, if you have it.

Follow directions when you take your medications.”

Thank you to WebMD at https://www.webmd.com/a-to-z-guides/what-is-metabolic-acidosis#2  for the above information.

Let’s say – hypothetically, of course – that you were one of the unlucky CKD patients to develop metabolic acidosis. How could you treat it?

I went directly to the National Kidney Foundation at https://www.kidney.org/atoz/content/metabolic-acidosis to find out. This is what they had to say:

“We all need bicarbonate (a form of carbon dioxide) in our blood. Low bicarbonate levels in the blood are a sign of metabolic acidosis.  It is a base, the opposite of acid, and can balance acid. It keeps our blood from becoming too acidic. Healthy kidneys help keep your bicarbonate levels in balance.  Low bicarbonate levels (less than 22 mmol/l) can also cause your kidney disease to get worse.   A small group of studies have shown that treatment with sodium bicarbonate or sodium citrate pills can help keep kidney disease from getting worse. However, you should not take sodium bicarbonate or sodium citrate pills unless your healthcare provider recommends it.”

I’m becoming a wee bit nervous now and I’d like to know when metabolic acidosis should start being treated if you, as a CKD (CKF) patient do develop it. Biomed at http://www.biomed.cas.cz/physiolres/pdf/prepress/1128.pdf reassured me a bit.

“Acid–base disorder is commonly observed in the course of CKF. Metabolic acidosis is noted in a majority of patients when GFR decreases to less than 20% to 25% of normal. The degree of acidosis approximately correlates with the severity of CKF and usually is more severe at a lower GFR…. Acidosis resulting from advanced renal insufficiency is called uremic acidosis. The level of GFR at which uremic acidosis develops varies depending on a multiplicity of factors. Endogenous acid production is an important factor, which in turn depends on the diet. Ingestion of vegetables and fruits results in net production of alkali, and therefore increased ingestion of these foods will tend to delay the appearance of metabolic acidosis in chronic renal failure. Diuretic therapy and hypokalemia, which tend to stimulate ammonia production, may delay the development of acidosis. The etiology of the renal disease also plays a role. In predominantly tubulointerstitial renal diseases, acidosis tends to develop earlier in the course of renal insufficiency than in predominantly glomerular diseases. In general, metabolic acidosis is rare when the GFR is greater than 25–20 ml/min (Oh et al. 2004).”

At least I understand why the sodium bicarbonate and I realize it’s not for me… yet.

Until next week,

Keep living your life!

Dapagliflozin/SGLT2 inhibitors

I’ve been reading a lot about dapagliflozin lately. That’s a word I didn’t know. And this is the perfect opportunity to learn about it. Ready? Let’s start.

The obvious first stop to my way of thinking was Medline Plus, part of the U.S. Library of Medicine, which in turn, is part of the Institutes of National Health at https://medlineplus.gov/druginfo/meds/a614015.html.

“Dapagliflozin is used along with diet and exercise, and sometimes with other medications, to lower blood sugar levels in patients with type 2 diabetes (condition in which blood sugar is too high because the body does not produce or use insulin normally). Dapagliflozin is in a class of medications called sodium-glucose co-transporter 2 (SGLT2) inhibitors. It lowers blood sugar by causing the kidneys to get rid of more glucose in the urine. Dapagliflozin is not used to treat type 1 diabetes (condition in which the body does not produce insulin and, therefore, cannot control the amount of sugar in the blood) or diabetic ketoacidosis (a serious condition that may develop if high blood sugar is not treated).

Over time, people who have diabetes and high blood sugar can develop serious or life-threatening complications, including heart disease, stroke, kidney problems, nerve damage, and eye problems. Taking dapagliflozin, making lifestyle changes (e.g., diet, exercise, quitting smoking), and regularly checking your blood sugar may help to manage your diabetes and improve your health. This therapy may also decrease your chances of having a heart attack, stroke, or other diabetes-related complications such as kidney failure, nerve damage (numb, cold legs or feet; decreased sexual ability in men and women), eye problems, including changes or loss of vision, or gum disease. Your doctor and other healthcare providers will talk to you about the best way to manage your diabetes.”

SGLT2 inhibitors? Hey, that was going to be next week’s blog… or so ignorant me thought. The Food and Drug Administration (FDA) at https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/sodium-glucose-cotransporter-2-sglt2-inhibitors explains what a SGLT2 inhibitor is.

“SGLT2 inhibitors are a class of prescription medicines that are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. Medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, and empagliflozin. They are available as single-ingredient products and also in combination with other diabetes medicines such as metformin. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. The safety and efficacy of SGLT2 inhibitors have not been established in patients with type 1 diabetes, and FDA has not approved them for use in these patients.”

There are also quite a few warnings about amputations and urinary tract infections caused by SGLT2 inhibitors on this site, although they are dated 8/20/18.

 

So it seems that dapagliflozin is one of several medications classified as SGLT2 inhibitor. So let’s concentrate on SGLT2s inhibitors then. Hmmm, is this some medication requiring injections or do you just pop a pill? Pharmacy Times at https://www.pharmacytimes.com/publications/health-system-edition/2014/september2014/sglt2-inhibitors-a-new-treatment-option-for-type-2-diabetes more than answered my question. It’s their chart you see above this paragraph.

Wait a minute. According to their chart, dapagliflozin is not recommended if your GFR is below 60, or stage 3 CKD. Canagliflozin is not recommended if your GFR is below 45. Your kidney function is a big factor in whether or not this drug can be prescribed for you.

But why? Exactly how do the kidneys process this drug? The following diagram from The National Center for Biotechnology Information, part of the U.S. National Library, which in turn (again) is part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3889318_13300_2013_42_Fig1_HTML.jpg will give you the visual. Basically, the SLGT2 inhibitor prevents the glucose in your blood from re-entering your blood stream after your blood has been filtered. The glucose has nowhere to go, so it exits your body via your urine along with the other wastes.

What about the side effects, since we already know the limitations of prescribing SLTG2 inhibitors? I thought  WebMd at  https://www.medicinenet.com/sglt2_inhibitors_type_2_diabetes_drug_class/article.htm#how_do_sglt2_inhibitors_work might enlighten us and they certainly did.

”On Aug. 29, 2018, the FDA issued a warning that cases of a rare but serious infection of the genitals and area around the genitals have been reported with the class of type 2 diabetes medicines called SGLT2 inhibitors. This serious rare infection, called necrotizing fasciitis of the perineum, is also referred to as Fournier’s gangrene.

SGLT2 inhibitors are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. First approved in 2013, medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, empagliflozin, and ertugliflozin. In addition, empagliflozin is approved to lower the risk of death from heart attack and stroke in adults with type 2 diabetes and heart disease. Untreated, type 2 diabetes can lead to serious problems, including blindness, nerve and kidney damage, and heart disease.

Seek medical attention immediately if you experience any symptoms of tenderness, redness, or swelling of the genitals or the area from the genitals back to the rectum, and have a fever above 100.4 F or a general feeling of being unwell. These symptoms can worsen quickly, so it is important to seek treatment right away.

On May 15, 2015, the FDA informed the public that SGLT2 inhibitors have been associated with increased risk of ketoacidosis in people with diabetes.

Common side effects

The most common side effect of SGLT2 inhibitors include:

Serious side effects of SGLT2 inhibitors include:

Whoa. It looks like there will have to be some serious discussions with your nephrologist before you agree to taking a SLGT2 inhibitor should he or she suggest it. Make sure you have your list of questions ready and someone to listen carefully and take notes.

Until next week,

Keep living your life!

re·​ha·​bil·​i·​ta·​tion 

What! As if staying in the hospital for six to thirteen days weren’t enough, it turned out that I would be in a rehabilitation center for an additional six to eight weeks. Again, while this was for pancreatic cancer, many Chronic Kidney Disease patients who have had surgery may require a stay in such places, too. I look for new experiences, but not this kind.

human-438430Let’s go to my favorite dictionary, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/rehabilitation for the definition of the word.

“: to bring (someone or something) back to a normal, healthy condition after an illness, injury, drug problem, etc.

b: to teach (a criminal in prison) to live a normal and productive life

c: to bring (someone or something) back to a good condition”

I hope it’s clear that it’s the first definition we’re dealing with today.

Forgive me for being dense, but I still didn’t get how that’s going to be done. So I searched for help and MedlinePlus, which is part of the U.S. National Library of Congress which, in turn, is part of the National Health Institutes, at https://medlineplus.gov/rehabilitation.html did just that.

What happens in a rehabilitation program?a.d.

When you get rehabilitation, you often have a team of different health care providers helping you. They will work with you to figure out your needs, goals, and treatment plan. The types of treatments that may be in a treatment plan include

  • Assistive devices, which are tools, equipment, and products that help people with disabilities move and function
  • Cognitive rehabilitation therapy to help you relearn or improve skills such as thinking, learning, memory, planning, and decision making
  • Mental health counseling
  • Music or art therapy to help you express your feelings, improve your thinking, and develop social connections
  • Nutritional counseling
  • Occupational therapy to help you with your daily activities
  • Physical therapy to help your strength, mobility, and fitness
  • Recreational therapy to improve your emotional well-being through arts and crafts, games, relaxation training, and animal-assisted therapy
  • Speech-language therapy to help with speaking, understanding, reading, writing and swallowing
  • Treatment for pain
  • Vocational rehabilitation to help you build skills for going to school or working at a job

Depending on your needs, you may have rehabilitation in the providers’ offices, a hospital, or an inpatient rehabilitation center. In some cases, a provider may come to your home. If you get care in your home, you will need to have family members or friends who can come and help with your rehabilitation.”

Personally, I won’t need some of these such as cognitive rehabilitation, speech-language therapy, and vocational rehabilitation. Brain and speaking aren’t involved in pancreatic surgery and I’m retired. You may be in the same situation if you have rehabilitation or you may not. It’s a list that’s made unique for each patient. I’ve got to remind you here that I’m not a doctor; this is a lay person giving her opinion.

IMG_1843(Edited)

Hmmm, it seemed pretty clear that each type of surgery requires its own sort of rehabilitation. Now that we know what’s involved, let’s see who would be involved if you required rehabilitation after a surgery. WebMD at https://www.webmd.com/healthy-aging/rehab-after-surgery#1 offered a succinct, easy to understand answer.

Who Works With You

Different experts help with different parts of your rehab. Some people who might be on your team:

Physiatrist. He’s a doctor who specializes in rehab. He tailors a plan to your needs and oversees the program to make sure it’s going well.

Physical therapist. He teaches you exercises to improve your strength and the range you have when you move your arm, leg, or whatever part of your body had the operation.

Occupational therapist. He helps you regain the skills you need for some basic activities in your everyday life. He might teach you how to cook meals, get dressed, shower or take a bath, and use the toilet. He’ll also show you how to use gadgets that can help you care for yourself more easily, such as a dressing stick or elastic shoelaces. Some occupational therapists will visit your home to make sure it’s safe and easy for you to get around.

Dietitian. He’ll help you plan healthy meals. If your doctor has told you to avoid salt, sugar, or certain foods after your surgery, the dietitian can help you find other choices.

Speech therapist. He helps with skills like talking, swallowing, and memory. Speech therapy can be helpful after surgery that affects your brain.

Nurses. They care for you if you’re staying for a few weeks or months in a rehab center. They may also come to your home to help track your recovery and help you with the transition to life back at home.

Psychologist or counselor. It’s natural to feel stressed out or depressed after your surgery. A mental health professional can help you manage your worries and treat any depression.

It can take many months to recover from an operation, but be patient. A lot depends on your overall health and the kind of procedure you had. Work closely with your rehab team and follow their instructions. Your hard work will pay off.”

Looking over the list, I won’t need a speech therapist and neither would you if you have some kind of kidney related surgery. I’m not so sure about a psychologist or counselor, either. I’m sort of thinking that going through chemotherapy and radiation treatments without one, I won’t need one after surgery. Then again, I’ve never had major surgery before and I’ve been told this is major major surgery. However, should I find myself in a position where my medical team and/or I feel I need counseling, I would not hesitate to ask for it… just as I’ve asked for help with the cancer.ot

Rehabilitation offers so much. I had no idea this was available until my surgeon told me about it. Nor did I know that Medicare will pay for it… sort of. This is from Medicare at https://www.medicare.gov/coverage/inpatient-rehabilitation-care.

 

“You pay this for each benefit period:

  • Days 1-60: $1,364 deductible.*
  • Days 61-90: $341 coinsurance each day.
  • Days 91 and beyond: $682 coinsurance per each “lifetime reserve day” after day 90 for each benefit period (up to 60 days over your lifetime).
  • Each day after the lifetime reserve days: all costs.

*You don’t have to pay a deductible for care you get in the inpatient rehabilitation facility if you were already charged a deductible for care you got in a prior hospitalization within the same benefit period. This is because your benefit period starts on day one of your prior hospital stay, and that stay counts towards your deductible.”

Excuse me while I go check my bank account.

Until next week,

Keep living your life!

No Longer a Transfusion Virgin

I’ve been thinking about the similarities between Chronic Kidney Disease treatment and Pancreatic Cancer treatment… or, at least, my Pancreatic Cancer treatment. Some are superficial, like going to the Research Institute several days a week for chemotherapy and those on dialysis going to the dialysis center several days a week for dialysis.

Some are not. A current topic of similarity was an eye opener for me. I am 72 years old and have never had a transfusion before last Monday. I’d gone to the Research Institute where I’m part of a clinical trial for a simple non-chemotherapy day checkup. This supposedly two hour appointment turned into almost eight hours. Why?

If you can understand these labs, you’ll know. If not, no problem. You know I’ll explain.

Component Your Value Standard Range
  RBC 2.23 10ˆ6/uL 3.50 – 5.40 10ˆ6/uL
Hemoglobin 6.8 g/dL 12.0 – 16.0 g/dL
Hematocrit 19.7 % 36.0 – 48.0 %
RDW 16.0 % 11.5 – 14.5 %
Platelets 15 K/uL 130 – 450 K/uL

Let’s start at the top of the list. RBC stands for red blood cells. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5260 tells us:

“Red blood cells: The blood cells that carry oxygen. Red cells contain hemoglobin and it is the hemoglobin which permits them to transport oxygen (and carbon dioxide). Hemoglobin, aside from being a transport molecule, is a pigment. It gives the cells their red color (and their name).

The abbreviation for red blood cells is RBCs. Red blood cells are sometime simply called red cells. They are also called erythrocytes or, rarely today, red blood corpuscles.”

So it makes sense that if RBC is below the standard range (column on the right), the hemoglobin will also be. And where are RBCs produced? Let’s trot on over to the National Institute of Diabetes, Digestive, and Kidney Disease (NIKKD) at https://www.niddk.nih.gov/health-information/kidney-disease/anemia for the answer to that one:

“Healthy kidneys produce a hormone called erythropoietin (EPO). A hormone is a chemical produced by the body and released into the blood to help trigger or regulate particular body functions. EPO prompts the bone marrow to make red blood cells, which then carry oxygen throughout the body.

What causes anemia in chronic kidney disease?

When kidneys are diseased or damaged, they do not make enough EPO. As a result, the bone marrow makes fewer red blood cells, causing anemia. When blood has fewer red blood cells, it deprives the body of the oxygen it needs.”

Now, this is not saying all CKD patients will have anemia, although it is common is the later stages of the disease. Chemotherapy had a lot to do with this, too.

What about this hematocrit? What is that? I went to the University of Rochester’s Health Encyclopedia at https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=hematocrit for help here:

“This test measures how much of your blood is made up of red blood cells.

Normal blood contains white blood cells, red blood cells, platelets, and the fluid portion called plasma. The word hematocrit means to separate. In this test, your red blood cells are separated from the rest of your blood so they can be measured.

Your hematocrit (HCT) shows whether you have a normal amount of red blood cells, too many, or too few. To measure your HCT, your blood sample is spun at a high speed to separate the red blood cells.”

MedicalNewsToday at https://www.medicalnewstoday.com/articles/321568.php helps us understand the RDW or red cell distribution width:

“If the results of a CBC [Gail here: that’s the complete blood count.] show low levels of red blood cells or hemoglobin, this usually suggests anemia. Doctors will then try to determine the cause of the condition using the RDW and other tests.”

So, we’re back to anemia. By the way, cancer is one of the diseases that can cause high numbers on your RDW. CKD is not, but diabetes – one of the primary causes of CKD – is.

I added platelets to the list since they are such an integral part of your blood. MedLinePlus at https://medlineplus.gov/plateletdisorders.html explains succinctly just what they are and what they do:

“Platelets, also known as thrombocytes, are small pieces of blood cells. They form in your bone marrow, a sponge-like tissue in your bones. Platelets play a major role in blood clotting. Normally, when one of your blood vessels is injured, you start to bleed. Your platelets will clot (clump together) to plug the hole in the blood vessel and stop the bleeding. You can have different problems with your platelets:

If your blood has a low number of platelets, it is called thrombocytopenia. This can put you at risk for mild to serious bleeding. The bleeding could be external or internal. There can be various causes. If the problem is mild, you may not need treatment. For more serious cases, you may need medicines or blood or platelet transfusions….”

I had my second infusion of platelets along with my first transfusion last week.

I’ve offered a multitude of definitions today. The point here is that both CKD patients and chemotherapy patients (and others suffering from a host of maladies) may need transfusions.

Right. I haven’t discussed what a transfusion is yet. Dictionary.com at https://www.dictionary.com/browse/transfusion defines it a little simplistically for us:

“the direct transferring of blood, plasma, or the like into a blood vessel.”

The MayoClinic at https://www.mayoclinic.org/tests-procedures/blood-transfusion/about/pac-20385168 adds:

“Your blood will be tested before a transfusion to determine whether your blood type is A, B, AB or O and whether your blood is Rh positive or Rh negative. The donated blood used for your transfusion must be compatible with your blood type.”

That’s when we discovered my son-in-law and I have the same blood type. Nice to know… just in case, you understand.

Before I leave you today, I want to remind my USA readers that this is Memorial Day. Having married a veteran, I now understand that we are honoring those who gave their saves to preserve ours no matter how long ago or how recent. Please give them a moment of your thoughts.

Until next week,

Keep living your life!

Don’t Know Much about FSGS…

Being on chemotherapy is very tiring, so I stay home a lot and delve into anything that catches my eye, like FSGS. I’ve seen the letters before and had sort of a vague idea of what it might be, but what better time to explore it and whatever it may have to do with Chronic Kidney Disease than now?

Let’s start at the beginning. FSGS is the acronym for focal segmental glomerulosclerosis. Anything look familiar? Maybe the ‘glomerul’ part of glomerulosclerosis? I think we need to know the definition of glomerulosclerosis to be able to answer that question. The National Institutes of Health’s U.S. National Library of Congress’s Medline Plus at https://medlineplus.gov/ency/article/000478.htm defines it this way:

“Focal segmental glomerulosclerosis is scar tissue in the filtering unit of the kidney. This structure is called the glomerulus. The glomeruli serve as filters that help the body get rid of harmful substances. Each kidney has thousands of glomeruli.

‘Focal’ means that some of the glomeruli become scarred. Others remain normal. ‘Segmental’ means that only part of an individual glomerulus is damaged.”

So, we do know what the ‘glomerul’ part of glomerulosclerosis means. It refers to the same filters in the kidneys we’ve been discussing for the past eleven years: the glomeruli. This former English teacher can assure you that ‘o’ is simply a connective between the two parts of the word. ‘Sclerosis’ is a term you may have heard of in relation to the disease of the same name, the one in which the following occurs (according to Encarta Dictionary):

“the hardening and thickening of body tissue as a result of unwarranted growth, degeneration of nerve fibers, or deposition of minerals, especially calcium.”

Wait a minute. When I first started writing about CKD, I approached NephCure Foundation… not being certain what it was, but seeing Neph in its name. They were kind enough to ask me to guest blog for them on 8/21/11. By the way, as of August 15, 2014, NephCure Foundation became NephCure Kidney International. That makes the connection to our kidneys much more clear.

Back to FSGS. The NephCure Kidney International website at https://nephcure.org/ offers us this information:

“How is FSGS Diagnosed?

FSGS is diagnosed with renal biopsy (when doctors examine a tiny portion of the kidney tissue), however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the Symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

Proteinuria – Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen which causes sudden weight gain.

Low Blood Albumin Levels because the kidneys are removing albumin instead of returning it to the blood

High Cholesterol in some cases

High Blood Pressure in some cases and can often be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.”

Whoa! Look at all the terms we’ve used again and again in the last eleven years of SlowItDownCKD’s weekly blog: proteinuria, edema, albumin, cholesterol, high blood pressure, and creatinine. This is definitely something that we, as CKD patients, should know about.

Okay. Let’s say you are diagnosed with FSGS. Now what? The National Kidney Organization at https://www.kidney.org/atoz/content/focal was helpful here:

How is FSGS treated?

The type of treatment you get depends on the cause. Everyone is different and your doctor will make a treatment plan that is right for your type of FSGS. Usually, treatments for FSGS include:

  • Corticosteroids (often called “steroids”)
  • Immunosuppressive drugs
  • ACE inhibitors and ARBs
  • Diuretics
  • Diet change

Corticosteroids and immunosuppressive drugs: These medications are used to calm your immune system (your body’s defense system) and stop it from attacking your glomeruli.

ACE inhibitors and ARBs: These are blood pressure medications used to reduce protein loss and control blood pressure.”

Diuretics: These medications help your body get rid of excess fluid and swelling. These can be used to lower your blood pressure too.

Diet changes:  Some diet changes may be needed, such as reducing salt (sodium) and protein in your food choices to lighten the load of wastes on the kidneys.”

I think we need another definition here. Yep, it’s Plasmapheresis. Back to the Encarta Dictionary.

“a process in which blood taken from a patient is treated to extract the cells and corpuscles, which are then added to another fluid and returned to the patient’s body.”

Let’s go back to The NephCure Kidney International website at https://nephcure.org/ for a succinct summary of FSGS Facts.

“More than 5400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

  • a limited number of biopsies are performed
  • the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome…

NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS…, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children,… and it is the second leading cause of kidney failure in children…

NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS…

About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation…

Approximately 1,000 FSGS patients a year receive kidney transplants… however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients….”

As prevalent and serious as this sounds, please remember that FSGS is a rare kidney disease. Knowing what we now know just may help you keep your eyes open for it.

Until next week,

Keep living your life!

Chemo and My Kidneys

 As most of you know, I am extremely protective of my kidneys. When I was first diagnosed with Chronic Kidney Disease 11 years ago, my eGFR was only 39. Here’s a quick reminder of what the eGFR is from my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“GFR: Glomerular filtration rate [if there is a lower case ‘e’ before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

39. That’s stage 3B, the lower part of stage 3B. During the intervening 11 years, I’ve been able to raise it to 50 (and sometimes higher for short periods) via vigorously following the renal diet, exercising, avoiding stress as much as possible, maintaining adequate sleep, and paying strict attention to the medications prescribed for me. While the medications were the ones I had been taking for high blood pressure prior to being diagnosed with CKD, they worked in my favor.

This excerpt from The National Center for Biotechnology Information (NCBI) part of the United States National Library of Medicine (NLM), a branch of the National Institutes of Health (NIH) at https://www.ncbi.nlm.nih.gov/books/NBK492989/ will explain why:

“The decision of whether to reduce blood pressure levels in someone who has chronic kidney disease will depend on

  • how high their blood pressure is (when untreated),
  • whether they have diabetes, and
  • how much protein is in their urine (albumin level).

A person with normal blood pressure who doesn’t have diabetes and hardly has any albumin in their urine will be able to get by without using any blood-pressure-lowering medication. But people who have high blood pressure, diabetes or high levels of albumin in their urine are advised to have treatment with ACE inhibitors (angiotensin-converting enzyme inhibitors) or sartans (angiotensin receptor blockers). In people who have diabetes, blood-sugar-lowering medication is also important.”

When I was first diagnosed with pancreatic cancer early last month, it changed my medical priorities. With my nephrologist’s blessing, my primary focus was the cancer… not my kidneys. It took constant reminders to myself not to be so quick to say no to anything that I thought would harm my kidneys. In other words, to those things I’d been saying no to for the last 11 years.

For example, once diagnosed with CKD, I ate very little protein keeping to my five ounce daily limitation. Not anymore. Protein is needed to avoid muscle wasting during chemotherapy with a minimum requirement of eight ounces a day. I even tried roast beef and other red meats. After 11 years, they no longer agreed with me so I eat ground turkey, chicken, cheese, and am considering soy.

Another change: I preferred not to eat carbohydrates, but was warned not to lose weight if I could help it. All of a sudden I’m eating Goldfish, bread, and pasta. I can’t say that I’m enjoying them, but I am keeping my weight loss to a minimum. Other limitations like those on potassium and phosphorous have also gone by the wayside. I’ve eaten every childhood favorite, foods that I’ve avoided for the last 11 years, and anything that might look tempting in the last month, but none of them really taste that good. I like the foods on the renal diet now.

Oh, the only thing I have not increased is salt. My daughter takes me to my chemotherapy sessions. There’s a Jewish style restaurant across the street and we showed up early one day. I wanted to try a toasted bagel with butter, the way I ate it before CKD. The damned thing was salty! I hadn’t expected that.

Back to chemo and my kidneys. I admit it. I was nervous. What was this combination of poisons going to do to my kidneys? If it was so caustic that I had to have a port in place so that it wouldn’t be injected directly into my veins for fear of obliterating them, what about my kidneys?

I anxiously awaited my first Comprehensive Blood Panel, the blood test that includes your GFR. Oh, oh, oh! My kidney function had risen to 55 and my creatinine had lowered to 1.0. Let me explain just how good this was.

A GFR of 55 is the higher part of stage 3A. 60 is where stage 2 of CKD begins. My kidneys were functioning better on chemo. And the creatinine? Let’s get a quick definition of that first. According to The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/tests-diagnosis:

“Creatinine. Creatinine is a waste product from the normal breakdown of muscles in your body. Your kidneys remove creatinine from your blood. Providers use the amount of creatinine in your blood to estimate your GFR. As kidney disease gets worse, the level of creatinine goes up.”

Yet, mine went down. How? I asked and it was explained that all the hydration used to clear my veins of the caustic chemotherapy had worked this magic. I had two hours of hydration before the chemo-therapy  itself, two hours afterward, and another two hours the next day. My kidneys had never been this hydrated!

But wait, there’s more. I have diabetes. The pancreas is the organ that produces insulin. Could my diabetes be from the tumor blocking the production of insulin by my pancreas? I truly don’t know, but my glucose level is within the standard range for the first time since I’ve been diagnosed with diabetes.

Would I recommend chemotherapy to raise your GFR, and lower your creatinine and your glucose level? Of course not. But I am feeling so very lucky that my kidneys are not coming to any harm during the chemotherapy necessary to save my life. I can’t begin to tell you how relieved I am.

Until next week,

Keep living your life!

Say That Again

I have been uttering that phrase for years, maybe even a decade. Each time I went for a hearing test, I was told I was getting there, but I didn’t need hearing aids yet. This year it changed. I’ll bet it’s because I have CKD.

This is from SlowItDownCKD  2011:

“Research shows that hearing loss is common in people with moderate Chronic Kidney Disease. As published in the American Journal of Kidney Diseases and highlighted on the National Kidney Foundation web site, a team of Australian researchers found that older adults with moderate Chronic Kidney Disease (CKD) have a higher prevalence of hearing loss than those of the same age without CKD.”

How moderate CKD and hearing are connected is another matter, one that apparently isn’t as well documented. Here’s what I found on Timpanogos Hearing and Balance’s website at https://utahhearingaids.com/hearing-loss-likely-individuals-chronic-kidney-disease/ and the other sites I searched. This comes from the same Universtiy of Sydney study I cited in my 2011 blog.  A study that was completed in 2010… eight years ago.

“The link between hearing loss and CKD can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear. Another reason for this connection is that kidney disease and hearing loss share common risk factors, including diabetes, high blood pressure and advanced age.”

Wait a minute. I wrote about this in SlowItDownCKD 2014, too:

“Suddenly it became clear. If toxins are – well – toxic to our bodies, that includes our ears. My old friend The Online Etymology Dictionary tells us the word toxic is derived directly from late Latin toxicus, which means ‘poisoned.’

Now I got it. Moderate CKD could be poisoning our bodies with a buildup of toxins. Our ears and the nerves in them are part of our body. Damaged nerves may cause hearing loss. I’d just never thought of it that way before. Sometimes all it takes is that one last piece of the puzzle to fall in place.

Hmmm. High blood pressure is the second most common leading cause of CKD and it can also lead to hearing loss. Let’s take a look at that.

According to WebMD

‘Certain illnesses, such as heart disease, high blood pressure, and diabetes, put ears at risk by interfering with the ears’ blood supply.’

I went right to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to figure out how since it includes a diagram from The National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health that demonstrates how high blood pressure is caused… and if you read on, you’ll read about the problems high blood pressure causes….and this sentence:

‘Humans have 10 pints of blood that are pumped by the heart through the arteries to all the other parts of the bodies.’

That would include the ears. Moderate CKD might mean that blood is tainted by the toxins our compromised kidneys could not rid us of.”

I was frustrated at not finding any more recent research, but sometimes you just have to take what you can get… like now.

I thought of an online hearing test I’d heard (Ouch! Poor word choice there.) about and decided to give it a try since it asked questions rather than having you listen to sounds as you would in an audiologist’s office. Here are my results from the  Better Hearing Institute at http://www.betterhearing.org/check-your-hearing

“SUMMARY

 Your hearing loss would be described as: Mild Hearing Loss. A hearing test may be necessary to monitor your hearing loss.

DETAIL REPORT

 Your Check Score: You scored 21 out of a possible 60 points. The remainder of this report will tell you what your score means.

Your Check Norm: Your score of 21 is at the 19 percentile of people with hearing loss in the United States, where low percentages mean lower hearing losses and high percentages mean more serious hearing losses compared to other people with hearing loss….

Subjective Hearing Loss Description: Based on the responses of more than 10,000 people with hearing loss and their family members, they would describe your hearing loss as: Mild Hearing Loss.

What Your Hearing Loss Means for Your Quality of Life: Research has shown that the higher your predicted hearing loss, the more likely the following quality-of-life factors may be negatively affected:

  • irritability, negativism and anger
  • fatigue, tension, stress and depression
  • avoidance or withdrawal from social situations
  • social rejection and loneliness
  • reduced alertness and increased risk of personal safety
  • impaired memory and ability to learn new tasks
  • reduced job performance and earning power
  • diminished psychological and overall health

What should you do next? Based on your score, we recommend the following: A hearing test may be necessary to monitor your hearing loss. Now hearing loss is situational, and the next step you take is dependent on your need to hear in various listening situations. Some people can live with mild hearing losses. Others, such as teachers and therapists whose auditory skills are very important for their everyday work, require corrective technology — such as hearing aids — even when their hearing loss is at mild levels. It becomes important for them to do something about their hearing loss so they can function adequately in their work environment….

References:

To review the study this report is based on visit:
http://www.betterhearing.org/hearingpedia/bhi-archives/eguides/validity-and-reliability-bhi-quick-hearing-check

To review research on hearing loss and quality of life visit:
www.betterhearing.org/hearingpedia/counseling-articles-tips/impact-treated-hearing-loss-quality-life as well as the following publication conducted by the National Council on the Aging (NCOA):
Hearing Aids and Quality of Life

My audiologist will be introducing me to hearing aids in the new year. I thought I had considered all the ramifications of CKD. And, frankly, I thought I understood what was happening to my kidneys. It looks like I did understand the loss of some kidney function… just not how that would affect the rest of my body.

I don’t know whether to break out the duct tape or the crazy glue to keep this aging body in one piece. Are you laughing? Good, because I wanted to have this Chanukah blog leave you in a good mood. I know, I’ll break out the dreidles in your honor. Happy Chanukah!

Until next week,

Keep living your life!

Backed Up

Granted this is weird, but I have wondered for quite a while what – if anything – constipation has to do with Chronic Kidney Disease. Maybe my memory is faulty (Hello, brain fog, my old friend), but I don’t remember having this problem before CKD entered my life… or did I?

In my attempt to find out if there is a connection, I hit pay dirt on my first search.

“Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are more likely to develop in individuals with constipation than in those with normal bowel movements, according to a new study published online in the Journal of the American Society of Nephrology.

More severe constipation, defined as using more than one laxative, was associated with increasing risks of CKD and its progression.”

You can read the entire Renal and Urology News article at https://www.renalandurologynews.com/chronic-kidney-disease-ckd/constipation-associated-with-ckd-esrd-risk/article/572659/.

Wait a minute. This is not quite as clear as I’d like it to be. For example, what exactly is constipation? The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/digestive-diseases/constipation was of help here:

“Constipation is a condition in which you may have fewer than three bowel movements a week; stools that are hard, dry, or lumpy; stools that are difficult or painful to pass; or a feeling that not all stool has passed. You usually can take steps to prevent or relieve constipation.”

Well then, what’s severe constipation? A new site for me, HealthCCM at https://health.ccm.net/faq/267-acute-constipation defines severe or acute constipation as,

“Acute constipation is usually defined by a slowing of intestinal transit generating a decrease in bowel movements and the appearance of dehydration. The person will have difficulty defecating or may not be able to at all.”

This sounds downright painful, so let’s go back to my original query about how constipation and CKD relate to each other.

But first I want to share this very clear explanation of how constipation happens from Everyday Health at https://www.everydayhealth.com/constipation/guide/.

“The GI tract, which consists of a series of hollow organs stretching from your mouth to your anus, is responsible for digestion, nutrient absorption, and waste removal.

In your lower GI tract, your large intestine, or bowel — which includes your colon and rectum — absorbs water from your digested food, changing it from a liquid to a solid (stool).

Constipation occurs when digested food spends too much time in your colon.

Your colon absorbs too much water, making your stool hard and dry — and difficult for your rectal muscles to push out of your body.”

Keep in mind that diabetes is the number one cause of CKD as you read this. According to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253

“Hormones help balance fluids in your body. Diseases and conditions that upset the balance of hormones may lead to constipation, including:

  • Diabetes
  • Overactive parathyroid gland (hyperparathyroidism)
  • Pregnancy
  • Underactive thyroid (hypothyroidism)”

Many of the sites I perused suggested drinking more water to avoid or correct constipation. But we’re CKD patients; our fluid intake (Well, mine, anyway) is restricted. I’m already drinking my maximum of 64 ounces a day. In the words of Laurel and Hardy’s Hardy, “Well, here’s another nice mess you’ve gotten me into!” It’s possible constipation contributed to my developing CKD and drinking more may help, but with CKD you’re limited to how much you can drink.

Another suggestion I ran into on many sites was increase your fruit and vegetable intake. Great, just great. I’m already at my maximum of three different fruits and three different vegetables – each of different serving sizes, mind you – daily.

Wikipedia at https://en.wikipedia.org/wiki/Constipation#Medications has a great deal of information about constipation. Remember though that anyone can edit any Wikipedia article at any time. Be that as it may, this sentence leaped out at me:

“Metabolic and endocrine problems which may lead to constipation include: hypercalcemiahypothyroidismhyperparathyroidismporphyriachronic kidney diseasepan-hypopituitarismdiabetes mellitus, and cystic fibrosis….”

Thank you, MedicineNet for reminding us that iron can cause constipation. How many of us (meaning CKD patients) are on iron tablets due to the anemia that CKD may cause? I realize some patients are even taking injections of synthetic iron to help with red blood production, something the kidneys are charged with and slow down on when they are in decline.

Apparently, another gift of aging can be constipation since your metabolic system slows down. That’s also what makes it so hard to lose weight once you reach a certain weight. I’m getting a lot of information here, but I’m still not clear as to how one may cause the other. Let’s search some more.

I think I just hit something. We already know that diabetes is the number one cause of CKD. Did you remember that high blood pressure is the second most usual cause of CKD? Take a look at this from Health at https://www.health.com/health/gallery/0,,20452199,00.html#inflammatory-bowel-disease-3:

“Constipation can be a side effect of some common drugs used to treat high blood pressure, such as calcium channel blockers and diuretics.

Diuretics, for instance, lower blood pressure by increasing urine output, which flushes water from your system. However, water is needed to keep stools soft and get them out of the body.”

Now we’re getting somewhere.

It gets even better. The American Association of Kidney Patients at https://aakp.org/dialysis/relieving-constipation/ not only offered more clarification, but offered a list of high fiber foods without going over most of our potassium and phosphorous limits. Fiber intake is considered another way to both avoid and help with constipation.

“Adults need 20-35 grams of fiber daily. However, for dialysis patients who have to limit their fluid intake, this may be too much since it is thought increased dietary fiber may require an increased fluid intake. Also, all patients are different so the amount of fiber needed to relieve constipation varies from person to person.

High Fiber Foods

Bran muffin                 ½ muffin

Brown rice (cooked)   ½ cup

Broccoli*                    ½ cup

Peach                          1 medium

Prunes*                       3

Prunes*                       3

Spaghetti (cooked)      ½ cup

Turnips*                      ¾ cup

(Each serving contains about 150mg potassium, 20-90mg phosphorus and 1 – 5.4 grams of fiber.) (*Items contains 2 or more grams of fiber per serving.)”

I’ve got the connection between constipation and CKD now; do you?

Until next week,

Keep living your life!

Not That Kind of Trial

I enjoy reading murder mysteries and thrillers, especially Victorian era ones like the work of Anne Perry.  Sometimes they include –  or even start with – the trial and work their way backwards to the crime. The trial. That got me to thinking about a different kind of trial: clinical trials. How did they begin? What are they? WHY are they?

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/:

“Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.”

That seemed to answer my last question, too, since their purpose is safely test new drugs or therapies.

Are these something recent? Something developed since the Federal Drug Administration (FDA) was instituted? No, they are far, far older. This is from Dr. Arun Bhatt’s Evolution of Clinical Research: A History Before and Beyond James Lind, which you can find at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/. I found it fascinating.

“The world’s first clinical trial is recorded in the ‘Book of Daniel’ in The Bible…. This experiment resembling a clinical trial was not conducted by a medical, but by King Nebuchadnezzar a resourceful military leader…. During his rule in Babylon, Nebuchadnezzar ordered his people to eat only meat and drink only wine, a diet he believed would keep them in sound physical condition…. But several young men of royal blood, who preferred to eat vegetables, objected. The king allowed these rebels to follow a diet of legumes and water — but only for 10 days. When Nebuchadnezzar’s experiment ended, the vegetarians appeared better nourished than the meat-eaters, so the king permitted the legume lovers to continue their diet…. This probably was the one of the first times in evolution of human species that an open uncontrolled human experiment guided a decision about public health.”

Well, then, who is this James Lind mentioned in the title of Dr. Bhatt’s paper? I turned to England’s The Museum: Brought to Life at http://broughttolife.sciencemuseum.org.uk/broughttolife/people/jameslind for the answer:

“The Scottish surgeon James Lind was born in Edinburgh and served an apprenticeship at the Edinburgh College of Surgeons. He then worked as a ship’s surgeon until he opened his own practice in Edinburgh in 1748. Lind discovered the use of citrus fruit as a cure for scurvy when he conducted an early clinical trial. While working as a naval surgeon, Lind encountered cases of scurvy, a disease which often struck sailors on long voyages. The cause, a lack of essential vitamins, was unknown at the time. Earlier doctors had suggested that fresh fruit could be used to treat scurvy, but Lind was the first to test the effects of different diets systematically on a group of patients in a clinical trial. In 1754 he began to feed 12 scurvy patients different foods and found that patients eating citrus fruits such as lemons and oranges recovered much faster than those who were given other kinds of food.”

And now? Why are clinical trials important to us as kidney patients? In this year’s May 21st blog (Use the topic dropdown to the right of the blog itself; it’s easier than scrolling through all the blogs.), I wrote about the benefits of All of Us Research Project. The following is from that blog.

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.”

KidneyX is also involved. On June 24th (Use the topic dropdown again.), I included their principles in the blog.

Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

‘We test and validate solutions to solve challenging problems in the delivery of health and human services.’”

I know, I know. Now you want to know where you can join clinical trials. How about Antidote? You can go to their website at https://antidote.me/match/search/questions/1?utm_campaign=unisearch&utm_source=slowitdownckd_com&utm_medium=ctsearch&utm_content=no_js or use the widget to the bottom right of the blog. If you’d like a bit more information, I wrote about them on Oct. 7th, 2017 (Use the month dropdown if you’d like to read that blog.)

I could go on and on, but I think you get the idea… and I’ve run out of space.

Until next week,

Keep living your life!

Only One?

Loads of good things have been happening in my family lately, among them a couple of marriages. That, of course, brings new people into the family. There’s always that obligatory meet-the-new-in-laws dinner.  At one of these, a just added family member mentioned that she only had one kidney. Then she asked me what that means as far as Chronic Kidney Disease… and I didn’t know. Today’s blog is for her.

Let’s jump right in with this explanation from the U.S. Department of Health’s National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at https://www.niddk.nih.gov/health-information/kidney-disease/solitary-kidney.

When a person has only one kidney or one working kidney, this kidney is called a solitary kidney. People born with kidney dysplasia have both kidneys; however, one kidney does not function (top right). When a kidney is removed surgically due to disease or for donation, both the kidney and ureter are removed (bottom right).

Well that was pretty straight forward. I wondered if she should be taking any kind of special cautions. According to the National Center for Biotechnology Information of the U.S. National Library of Medicine, National Institutes of Health, PubMed at https://www.ncbi.nlm.nih.gov/pubmed/16985610,

Removal of one kidney leads to structural and functional changes by the remaining kidney, including increased filtration of the remaining glomeruli. These functional changes have generally been considered beneficial because they mitigate the reduction in the total glomerular filtration rate that would otherwise occur, but experimental evidence suggests that these changes may have an adverse effect on the remaining kidney.

That sounded great… until I got to ‘adverse effect.’ So, naturally, I wanted to know what they meant. The Kidney and Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Solitary_Kidney.php told me what I wanted to know.

If having a single kidney does affect your health, the changes are likely to be so small and happen so slowly that you won’t notice them. Over long periods of time, however, these gradual changes may require specific measures or treatments. Changes that may result from a single kidney include the following:

  • High blood pressure. Kidneys help maintain a healthy blood pressure by regulating how much fluid flows through the bloodstream and by making a hormone called renin that works with other hormones to expand or contract blood vessels. Many people who lose or donate a kidney are found to have slightly higher blood pressure after several years.
  • Proteinuria. Excessive protein in the urine, a condition known as proteinuria, can be a sign of kidney damage. People are often found to have higher-than-normal levels of protein in their urine after they have lived with one kidney for several years.
  • Reduced GFR. The glomerular filtration rate (GFR) shows how efficiently your kidneys are removing wastes from your bloodstream. People have a reduced GFR if they have only one kidney.

In the nephron …, tiny blood vessels intertwine with urine-collecting tubes. Each kidney contains about 1 million nephrons.

You can have high blood pressure, proteinuria, and reduced GFR and still feel fine. As long as these conditions are under control, they will probably not affect your health or longevity. Schedule regular checkups with your doctor to monitor these conditions.

Wait a minute! Those are also the effects of Chronic Kidney Disease. And as you read on, you’ll see that the precautions are the same as those for someone who already has CKD.

What, then, is my new in-law supposed to do since she has a solitary kidney? I went to Medic8, a new site for me, at http://www.medic8.com/kidney-disorders/solitary-kidney.htm for the following suggestions.

Monitoring

Your doctor should monitor your kidney function by checking your blood pressure and testing your urine and blood once a year.

  • Normal blood pressure is considered to be 120/80 or lower. You have high blood pressure if it is over 140/90. People with kidney disease or one kidney should keep their blood pressure below 130/80. Controlling blood pressure is especially important because high blood pressure can damage kidneys.
  • Your doctor may use a strip of special paper dipped into a little cup of your urine to test for protein. The colour of the “dipstick” indicates the presence or absence of protein. A more sensitive test for proteinuria involves laboratory measurement and calculation of the protein-to-creatinine ratio. A high protein-to-creatinine ratio in urine (greater than 30 milligrams of albumin per 1 gram of creatinine) shows that kidneys are leaking protein that should be kept in the blood.
  • … scientists have discovered that they can estimate a person’s GFR based on the amount of creatinine in a small blood sample. The new GFR calculation uses the patient’s creatinine measurement along with weight, age, and values assigned for sex and race. …. If your GFR stays consistently below 60, you are considered to have chronic kidney disease.

Controlling Blood Pressure

If your blood pressure is above normal, you should work with your doctor to keep it below 130/80. Great care should be taken in selecting blood pressure medicines for people with a solitary kidney. Angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) are two classes of blood pressure medicine that protect kidney function and reduce proteinuria. But these medicines may be harmful to someone with renal artery stenosis (RAS), which is the hardening of the arteries that enter the kidneys. Diuretics can help control blood pressure by removing excess fluid in the body. Controlling your blood pressure may require a combination of two or more medicines, plus changes in diet and activity level.

Eating Sensibly

Having a single kidney does not mean that you have to follow a special diet. You simply need to make healthy choices, including fruits, vegetables, grains, and low-fat dairy foods. Limit your daily salt (sodium) intake to 2,000 milligrams or less if you already have high blood pressure. Reading nutrition labels on packaged foods to learn how much sodium is in one serving and keeping a sodium diary can help. Limit alcohol and caffeine intake as well.

Avoid high-protein diets. Protein breaks down into the waste materials that the kidneys must remove, so excessive protein puts an extra burden on the kidneys. Eating moderate amounts of protein is still important for proper nutrition. A dietitian can help you find the right amount of protein in your diet.

Avoiding Injury

…. Having a solitary kidney should not automatically disqualify you from sports participation. Children should be encouraged to engage in some form of physical activity, even if contact sports are ruled out. Protective gear such as padded vests worn under a uniform can make limited contact sports like basketball or soccer safe. Doctors, parents, and patients should consider the risks of any activity and decide whether the benefits outweigh those risks.

I am happy to say I think our new relative is going to find this a comforting blog. I know I did.

Oh, talking about one. I have one desk copy of the now retired The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 left. Leave a comment if you’d like to have it. All I ask is that you not have received a free book from me before.

Until next week,

Keep living your life!

 

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/ :

Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

A Laboring Electrolyte

It’s Labor Day here in the United States. I feel a special affinity for this holiday and wanted to explain the day some more. Oh, I already did in SlowItDownCKD 2016:

“For those of you in the United States, here’s hoping you have a healthy, safe Labor Day. I come from a union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant aimed at the men who were saving up funds to bring their families here from Europe. I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

‘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 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.’”

Now, how do I transition from Labor Day to magnesium? Hmmm, my hard working daughter brought up the subject in today’s phone conversation, but that doesn’t seem like a good transition. Aha! Magnesium is a hard working electrolyte. Okay, that works for me.

Let’s start off with the basics. This passage from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will give you an idea of what magnesium is and what it may have to do with you as a CKD patient:

“In order to fully understand the renal diet, you need to know a little something about electrolytes. There are the sodium, potassium, and phosphate you’ve been told about and also calcium, magnesium, chloride and bicarbonate. They maintain balance in your body. This is not the kind of balance that helps you stand upright, but the kind that keeps your body healthy. Too much or too little of a certain electrolyte presents different problems.”

Problems? With magnesium? Maybe we need to know what magnesium does for us. 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 much magnesium? Keep in mind that as CKD patients, electrolytes are not being as effectively eliminated by our kidneys as they could be since we have some degree of decline in our kidney function.

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 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
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 ….”

Notice how many times the kidneys were mentioned. 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!

Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

Until next week,
Keep living your life!

Ratio: Is That Like Rationing?

urine containerA friend called me Friday night wondering what her creatinine/albumin ratio meant since that reading was high on her last blood draw. Actually, she wanted to know if this was something to worry about. After extracting a promise that she would call her doctor with her questions today when her physician’s office opened for business again, I gave her some explanations. Of course, then I wanted to give you the same explanations.

Although the Online Etymology Dictionary tells us both ratio and rationing are derived from the same Latin root – ratio – which means “reckoning, calculation; business affair, procedure,” also “reason, reasoning, judgment, understanding,” they aren’t exactly the same. My old favorite, The Merriam-Webster Dictionary defines ratio at dictionaryhttps://www.merriam-webster.com/dictionary/ratio in the following way: the relationship in quantity, amount, or size between two or more things, as in that of your creatinine and albumin.

As for rationing, if you’re old enough to remember World War II, you know what it means. If you’re not, the same dictionary can help us out again. At https://www.merriam-webster.com/dictionary/rationing, we’re told it’s “a share especially as determined by supply.” Nope, doesn’t work here since we’re not sharing our creatinine or albumin with anyone else. We each have our own supply in our own ratios, albeit sometimes too high or sometimes too low.

What are creatinine and albumin anyway? Let’s see what we can find about creatinine in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

“Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.”

Well, what about albumin? This can get a bit complicated. Remember, the UACR (Hang on, explanation of this coming soon.) deals with urine albumin. There’s an explanation in SlowItDownCKD  2016 about what it’s not: serum albumin.

“Maybe we should take a look at serum albumin level. Serum means it’s the clear part of your blood, the part without red or white blood cells. This much is fairly common knowledge. Albumin is not. Medlineplus, part of The National Institutes of Health’s U.S. National Library of Medicine at https://medlineplus.gov/ency/article/003480.htm tells us, ‘Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.’ Uh-oh, this is also not good: a high level of serum albumin indicates progression of your kidney disease. Conversely, kidney disease can cause a high level of serum albumin.”

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This is from SlowItDownCKD 2015 and explains what the UACR is and why your albumin-to-creatinine ratio (UAC R) is important:

In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse , a service of the NIH, at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.”

Basically, that means if you have a high UACR once, get your urine retested a week or two later before you even think about worrying, which is what my friend’s doctor confirmed. But do make sure to get that second test so you can be certain your kidney function is not being compromised.

I was thrilled that both my paper and notes from the field about Chronic Kidney Disease Awareness were accepted for Landmark’s Journal for the  Conference for Global Transformation AND then be able to Journal for the Conference for Global Transformationpresent a poster about it during the conference this past weekend. In addition I was lucky enough to have lunch with one of the keynote speakers. Who, you ask? Amy D. Waterman, Ph.D.

This is one important person to us. She has changed the face of pre dialysis and transplant education globally by starting “an educational nonprofit corporation and has been awarded more than $20 million in grants…she has reached tens of thousands of people to date, educating them in the miracle of live organ donation. Last year, Dr. Waterman was invited to the White House to share about the possibility of ending the organ donor shortage.” This material is from the Journal of the 2017 Conference for Global Transformation, Volume 17, No. 1.

This is exactly what we need to do for early and moderate stage CKD. This is what the social media presence, the blogs, and the books are about. And you know what? That’s just.plain.not.enough. Last I heard, I have 107,000 readers in 106 countries. And you know what? That’s just.plain.not.enough. Am I greedy? Absolutely when it comes to sharing awareness of CKD. Do I know how to expand my coverage? Nope…not yet, that is. I am so very open to suggestions? Let me hear them!

K.E.E.P.Lest we forget, this year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. As they’ve stated, “The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.”

Until next week,

Keep living your life!

 

B.U.N. No, not bun. B.U.N.

Let’s consider this part 2 of last week’s blog since all these terms and tests and functions are intertwined for Chronic Kidney Disease patients. Thanks to reader Paul (not my Bear, but another Paul) for emphatically agreeing with me about this.

Bing! Bing! Bing! I know where to start. This is from The National Kidney Disease Education Program at the U.S. Department of Health and Human Services’ information about being tested for CKD.

“If necessary, meaning if your kidney function is compromised, your pcp will make certain you get to a nephrologist promptly.  This specialist will conduct more intensive tests that include:

Blood:

BUN –

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.”

If you read last week’s blog about creatinine, you know there’s more to the testing than that and that more of the information is in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. No sense to repeat myself so soon.

Let’s take this very slowly. I don’t think it necessary to define blood, but urea? Maybe. I found this in SlowItDownCKD 2015:

“But how can I explain blood urea?  I’ll allow the experts to do that.

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

‘Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly or that you are dehydrated (have low body water content).’

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well….”

You with me so far? If there’s suspicion of CKD, your nephrologist tests your serum creatinine (see last week’s blog) and your BUN.  Wait a minute; I haven’t explained nitrogen yet. Oh, I see; it has to be defined in conjunction with urea.

Thanks to The National Kidney Foundation at https://www.kidney.org/atoz/content/understanding-your-lab-values for clearing this up:

“Urea nitrogen is a normal waste product in your blood that comes from the breakdown of protein from the foods you eat and from your body metabolism. It is normally removed from your blood by your kidneys, but when kidney function slows down, the BUN level rises. BUN can also rise if you eat more protein, and it can fall if you eat less protein.”

So now the reason for this protein restriction I wrote about in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease should be clear.

“So, why is protein limited? One reason is that it is the source of a great deal of phosphorus. Another is that a number of nephrons were already destroyed before you were even diagnosed. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.  Restricting protein is a way to reduce the nephrons’ work.”

This is starting to sound like a rabbit warren – one piece leads to another, which verves off to lead to another, and so forth and so on. All right, let’s keep going anyway.

Guess what. Urea is also tested via the urine. Nothing like confusing the issue, at least to those of us who are lay people like me. Let’s see if Healthline at http://www.healthline.com/health/urea-nitrogen-urine#overview1 can straighten this out for us.

“Your body creates ammonia when it breaks down protein from foods. Ammonia contains nitrogen, which mixes with other elements in your body, including carbon, hydrogen, and oxygen to form urea. Urea is a waste product that is excreted by the kidneys when you urinate.

The urine urea nitrogen test determines how much urea is in the urine to assess the amount of protein breakdown. The test can help determine how well the kidneys are functioning, and if your intake of protein is too high or low. Additionally, it can help diagnose whether you have a problem with protein digestion or absorption from the gut.”

Hmmm, these two don’t sound that different to me other than what is being analyzed for the result – blood (although blood serum is used, rather than whole blood) or urine.

What about BUN to Creatinine tests? How do they fit in here? After all, this is part 2 of last week’s blog about creatinine. Thank you to Medicine Net at http://www.medicinenet.com/creatinine_blood_test/article.htm for explaining. “The BUN-to-creatinine ratio generally provides more precise information about kidney function and its possible underlying cause compared with creatinine level alone.”

Dizzy yet? I think that’s enough for one day.

In other news, the price of all my Chronic Kidney Disease books has been reduced by 20%. I think more people will avail themselves of this information if they cost less… and that’s my aim: CKD awareness. If you belong to Kindle’s share program, you can take advantage of the fact that the price there was reduced to $1.99. You can also loan my books to a Kindle friend or borrow them from one for free for 14 days. Or you can ask your local librarian to order all five books, another way of reading them free. I almost forgot: as a member of Kindle Unlimited and the Kindle Owners’ Lending Library, you also read the books for free although you do need to pay your usual monthly subscription fee.

Students: Please be aware that some unscrupulous sites have been offering to rent you my books for a term for much more than it would cost to buy them. I’ve succeeded in getting most of them to stop this practice, but more keep popping up.

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

Until next week,

Keep living your life!

Never Too Old to Learn

CoffeeCupPopCatalinStockLast week, we were delighted to have an overnight guest we hadn’t seen for a year or two. While we were all waking ourselves up the next morning, I asked him if he’d like some coffee.  Yep, he’s my family; that look of delight on his face when he thought of coffee confirmed it. Then I asked if he took milk in his coffee. Hmmm, more confirmation: he passed on the milk claiming lactose intolerance, another family trait. But when we got to the sugar question, he startled me. His response was something like no thanks, I have high cholesterol. After a moment of stunned silence, I asked why he connected cholesterol and sugar. He said his doctor told him to cut down on sugars to lower his cholesterol. Hmmm, very interesting.

This is the definition of cholesterol from What Is It and How Did I Get It? Early Stage Chronic Early Disease:FullSizeRender (2)

While the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel.

If that doesn’t ring a bell, here’s the definition of dyslipidemia:

Abnormal levels of cholesterol, triglyceride or both

Now we know there’s a normal and an abnormal level of cholesterol and that can’t be good. Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti, one of leading nephrologists in the U.S., explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

IMG_2982Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

I repeat, “…can delay the loss of kidney function.” That has been your ultimate goal since you were diagnosed, hasn’t it?

You may become confused by the three different kinds of cholesterol readings when you see the results of your blood tests.  I know I was, so I researched them and then wrote about them in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol. LDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.FullSizeRender (3)

Wait a minute. Where did triglycerides come into this? According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/ART-20048186

Triglycerides and cholesterol are separate types of lipids that circulate in your blood. Triglycerides store unused calories and provide your body with energy, and cholesterol is used to build cells and certain hormones. Because triglycerides and cholesterol can’t dissolve in blood, they circulate throughout your body with the help of proteins that transport the lipids (lipoproteins).

Still with me?  Good, because you can do something about this.

cholestero

Sometimes, it’s as simple as lifestyle changes like adjusting your diet. While I don’t agree with all of this advice, DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/lowering-cholesterol-with-chronic-kidney-disease/e/5304 can get you started.

  •  Avoid foods high in saturated fat and cholesterol such as whole milk, cheese and fat from meat.
  • Bake, grill, broil and roast your poultry, fish and meat. Choose lean cuts of meat and trim off any fat.
  • Eggs are an excellent source of protein, but the yolks are high in cholesterol. Try egg substitutes like Egg Beaters® or Scramblers®, or substitute two egg whites for a whole egg.
  • Eat at least two servings of fish every week. Salmon, tuna, herring and trout contain good amounts of omega-3 fatty acids that lower your risk of heart disease.
  • Try spreads like Benecol® or Take Control® in place of butter or margarine. Plant sterols and stanols in these spreads help lower cholesterol levels.
  • Choose oils that are high in mono- and polyunsaturated fats: canola, olive, peanut, corn, safflower, soybean and sunflower.
  • Read food labels and try to eliminate foods with trans-fats (found in hydrogenated oils, margarine and many commercially prepared snack foods).
  • Eat kidney-friendly fruits and vegetables.water melon

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.

As was suggested in this Everyday Health article (http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx) included in SlowItDownCKD 2015, exercise will help.

       Try these exercise options to help shed pounds and manage high cholesterol:

  • Walking
  • Jogging or running
  • Swimming
  • Taking an aerobics class
  • Biking
  • Playing tennis, basketball, or other sports
  • Using weight machines or lifting free weights to build muscle tone

statinsIf life style changes don’t work for you, your doctor may prescribe a statin.  The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/statin defines this as:

any of a group of drugs (as lovastatin and simvastatin) that inhibit the synthesis of cholesterol and promote the production of LDL-binding receptors in the liver resulting in a usually marked decrease in the level of LDL and a modest increase in the level of HDL circulating in blood plasma

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition.

Finally, sugar. What did my cousin’s doctor mean about sugar’s role in lowering his cholesterol? This was news to me, so I researched. Sure enough, my cousin’s doctor was right.  According to Progressive Health at http://www.progressivehealth.com/sugar-may-be-the-cause-of-your-elevated-cholestero.htm:

Sugar is a good example of a carbohydrate with high glycemic index. It can, therefore, increase the amount of small, dense LDL particles in the blood.

Although, health experts used to advocate that we cut the amount of sugar we consume because high blood sugar can cause insulin resistance and increase the risk of diabetes, there is now another reason to cut down on our sugar consumption.sugar

A number of studies show that sugar can affect the kind and amount of cholesterol released into the blood.

So? According to the US National Library of Medicine National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297703/

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

The Lamp Post and the Kidneys

disabledThis past week, my car and I tangled with a lamp post. My car got the worst of it. Luckily, I was driving very slowly in a parking lot while looking for the Disabled Parking Spots. (Ironic, isn’t it?) All I got were bruises and stiffness. Or did I?

As usual when confronted with something I didn’t know about, I started wondering:  What happened to my kidneys safely buried in my body while my skin turned black and blue from the seat belt and my hand ended up with tendonitis from gripping the steering wheel so firmly?

Do you remember where the kidneys are? Here’s the drawing from the National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of Health which was included in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. You can see that they are internal organs, which means they are not directly under the skin, but protected by layers of fat and muscle (Hmmmm, I usually wish there were more muscle and less fat over them), and other organs.

Location of Kidneys

What is it

According to The University of Michigan Medical School’s Dissector Answers at http://www.med.umich.edu/lrc/coursepages/m1/anatomy2010/html/gastrointestinal_system/kidney_ans.html#a1:

“Besides their peritoneal covering, each is embedded in two layers of fat, with a membrane, the renal fascia, in between the layers. Inside the renal fascia is the perirenal fat, while outside the membrane is the pararenal fat. (The perirenal layer is inside, while the pararenal layer is around the renal fascia.)”

Great! All I needed to know now is what that meant.  We already know from the quote above that perirenal fat is inside the renal fascia, while pararenal fat is outside, but what’s the fascia?

The Medical Dictionary section of the Free Dictionary at http://medical-dictionary.thefreedictionary.com/fascia cleared that up right away:

renal-fascia“a sheet or band of fibrous tissue such as lies deep to the skin or invests muscles and various body organs.”

Wait a minute; what about peritoneal? I had this vague memory of hearing the word before, but not its definition. Just to mix it up a little bit, this time I turned to MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=4842, but for the root word peritoneum since the suffix ‘al’ just means relating to and will only confuse the issue. …

“The membrane that lines the abdominal cavity and covers most of the abdominal organs.”

I needed the information on AnatomyZone at http://www.anatomyzone.com/tutorials/location-and-relations-of-the-kidney/ to find out what lies in front of the kidneys.

“… the colon runs in front of the kidney. …. It runs in front of the lower part of the kidney, the inferior pole of the kidney. That’s the hepatic flexure….. the descending part of the duodenum sits in front of the medial part of the kidney.   The descending part of the duodenum is retroperitoneal as well and it sits right up against the kidney….on top of the kidney. This is the suprarenal gland or the adrenal gland.

…. the other side of the colon sits in front of the left kidney…. the stomach and the spleen sitting in front of it. … the end of the pancreas sitting in colonfront of it as well. “

This reads a bit choppy because it is describing an interactive visualization of the kidneys. If you want to find out more and have a little fun with the site, do click through on the site’s URL. I found this even more entertaining than my Concise Encyclopedia of the Human Body (London: Red Lemon Press, 2015) which I can pore over for hours just marveling at this body of ours.

It seems to me that I’ve ignored whatever is behind the kidneys so let’s find out what’s there. Oh, of course…

“The ribs and muscles of the back protect the kidneys from external damage. Adipose tissue known as perirenal fat surrounds the kidneys and acts as protective padding.” Many thanks to another interactive site, Inner Body at http://www.innerbody.com/image_urinov/dige05-new.html#full-description for this information.

By the way, adipose tissue – or perirenal fat – is an energy storing fat. While necessary, too much of this makes us appear fat and can compromise our health. This is the white, belly fat mentioned in conjunction with kidney disease in The Book of Blogs: Moderate Stage Chronic Kidney FullSizeRender (3)Disease, Part 2:

“Other studies have suggested that once diagnosed with kidney disease, weight loss may slow kidney disease progression, but this is the first research study to support losing belly fat and limiting phosphorus consumption as a possible way to prevent kidney disease from developing.  Dr. Joseph Vassalotti, chief medical officer at the National Kidney Foundation  11/3/13”

It seems I’ve developed a sort of pattern here. We’ve looked in front of the kidneys and behind them. What’s above them, I was beginning to wonder. Then I realized I already knew… and so do you if you’ve been reading my work: They lie below the diaphragm and the right is lower than the left because the liver is on the right side above the kidneys. The adrenal glands which were mentioned above are also on top of your kidneys. According to Reference.com, a new site for me at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278:

“Adrenal glands are triangular-shaped, measure approximately 1.5 inches high and 3 inches long and are composed of two parts, according to Johns Hopkins Medicine. The outer part is the adrenal cortex, which creates cortisol, aldosterone and androgen hormones. The second part is the adrenal medulla, which creates noradrenaline and adrenaline.adrenal

Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. Aldosterone helps regulate sodium and potassium levels, blood volume and blood pressure. Androgen hormones are steroid hormones that are converted to female or male hormones in other parts of the body.

Noradrenaline helps regulate blood pressure, increasing it during times of stress, notes Endocrineweb. Adrenaline is often associated with the adrenal glands, and it increases the heart rate and blood flow to the muscles and the brain.”

It looks like my kidneys and I had nothing to worry about.  They’re well protected from the impact of the accident.  *sigh* If only my car had been as well protected…

IMG_2980IMG_2982

Until next week,

Keep living your life!