It’s National Kidney Month

Hello, hello, and a belated welcome to National Kidney Month. This year, for a change, I decided to go to a non-medical site for a clear explanation of what this month is. The entire blog [except my introduction, of course.] is from National Today, a site committed to which celebrations are on which day[s]:

“March is dedicated to National Kidney Month. The kidneys, two bean-shaped organs located in the back of the abdomen, perform crucial functions to filter out toxins, produce red blood cells, and regulate pH. They filter about half a cup of blood every hour, creating urine from harmful and unnecessary waste.

When kidneys fail to function properly, waste builds up in the blood and leads to a weakened system and a host of problems like anemia, nerve damage, and high blood pressure. Chronic kidney disease(CKD) affects more than 1 in 7 American adults and is the 9th leading cause of death in the U.S.

HISTORY OF NATIONAL KIDNEY MONTH

National Kidney Month, observed every March, brings awareness to kidney health and encourages people to support kidney disease research and take steps to keep their own kidneys safe and healthy. 

Kidneys filter blood, make urine, and produce the red blood cells that carry oxygen through your body. These vital organs also control blood pressure and produce vitamin D to keep bones strong.

Malfunctioning kidneys can lead to painful kidney stones and infections that, left untreated, require a transplant. Some pre-existing conditions, like high blood pressure and diabetes, put you at increased risk for kidney disease. 

Chronic Kidney Disease(CKD) affects almost 40 million American adults. In 2016, three-quarters of a million people in the U.S. required dialysis or a kidney transplant. Dialysis and kidney transplants, the only treatment options for severe kidney failure, are difficult, expensive, and not always available. Patients seeking new organs may not always get them in time to survive; in the U.S., twelve people die each day waiting for a kidney.

To prevent kidney disease, the National Kidney Foundation recommends taking proactive steps to keep your kidneys healthy and prevent the onset of CKD. You can protect your kidneys by managing high blood pressure, making healthy food and drink choices, and reducing stress. 

The National Kidney Foundation grew out of a mother’s determination to further research into treatment for kidney conditions. When her infant son was diagnosed with nephrosis, Ada DeBold started the Committee for Nephrosis Research to organize efforts to find treatments and connect patients and doctors. DeBold continued crusading for the organization, which eventually became the National Kidney Foundation. The Foundation conducts fundraising to support important research into the treatment and prevention of kidney disease.

NATIONAL KIDNEY MONTH TIMELINE

1984

National Organ Transplant Act Passes

The NOTA establishes the National Organ Procurement and Transplantation Network, which maintains an organ matching registry to address organ shortages and streamline the donation process.

1954

First Successful Kidney Transplant

The first successful kidney transplant is performed between two identical twins in Boston.

1943

Dialysis Invented

Dutch doctor Willem Kolff invents the ‘artificial kidney’ to clean the blood of kidney failure patients.

1902

Animal Experiments

The first successful kidney transplants in animals are performed at the Vienna Medical School.

NATIONAL KIDNEY MONTH FAQS

What month is National Kidney Month?

National Kidney Month is observed annually during the month of March.

Is there a ribbon for kidney disease?

Kidney Disease Awareness is symbolized by the color green. Purchase green ribbons, green wristbands, or green magnets directly from a Kidney Disease Awareness non profit in order to help raise funds for treatments.

What are the symptoms of chronic kidney disease?

Symptoms include difficulty urinating or less urine, sweeping in the extremities, shortness of breath, nausea, and feeling cold and tired. If you experience chronic symptoms that you suspect are related to kidney function, consult your physician.

HOW TO OBSERVE NATIONAL KIDNEY MONTH

1. Join the organ donor registry

Most organ donations come from deceased people. Register to be an organ donor when you die and your healthy organs and tissue can save dozens of lives.

2. Donate to a kidney non-profit

Non-profit organizations do the important work of raising awareness about kidney disease, providing resources and assistance to patients, and connecting patients, doctors, and donors.

3. Be good to your kidneys

Are you keeping your kidneys healthy? Aim for a lower intake of sodium and sugars, more whole grains and low-fat dairy, and regular exercise to reduce your risk of kidney disease, high blood pressure, diabetes, and other diseases.

5 FASCINATING FACTS ABOUT KIDNEYS

1. You only need one kidney to live

Although you’re born with two kidneys, each of which have about 1.5 million blood-filtering units(nephrons), you only need about 300,000 nephrons to filter your blood properly.

2. Your kidneys are lopsided

The right kidney is slightly smaller and sits lower than the left to make room for another important organ, the liver.

3. You can drink too much water

This can cause a condition called hyponatremia, which, though not common, can damage the kidneys.

4. Sausage casing and orange juice cans

Willem Kolff, who invented the first artificial kidney that led to today’s dialysis technology, used sausage casings, orange juice cans, and a washing machine to create a rudimentary blood cleaning mechanism.

5. Climate change may increase kidney disease

As parts of the world get warmer, the dehydration that leads to kidney disease is likely to rise among manual laborers.

WHY NATIONAL KIDNEY MONTH IS IMPORTANT

1. It reminds us to be good to our bodies

Make sure you take care of your body and your vital internal organs so they can continue taking care of you.

2. It’s a chance to express gratitude for our health

If you have fully functional kidneys, be grateful! Take a minute to feel gratitude for all the internal organs that do the invisible, daily work of keeping us alive.

3. It shows that science is awesome

Just a few decades ago, kidney disease could mean a death sentence. Today, although it’s still a serious and frightening illness, we can often fight off kidney failure with dialysis and organ transplants.”

Many thanks to National Today  for their simple, straight forward explanation of National Kidney Month.

Until next week,

Keep living your life!

And the Nose…

Since I wrote about the ears and kidney disease last week, I got curious about the nose and kidney disease. Makes sense to me. If CKD can affect your hearing, why not your sense of smell? I was delighted to find out I wasn’t the only one interested in this.

Photo by Anastasia Shuraeva on Pexels.com

I started my inquiry with the Sage Journal which calls itself “Your gateway to world-class research.”  There I found a study originally published in Ear, Nose and Throat Journal that came to the following conclusion:

“The study has demonstrated that patients with CKD have prevalence of olfactory dysfunction, and it appears that the affectation was more at the central olfactory pathway. The severity of olfactory dysfunction increases with worsening severity of kidney disease. This finding will serve as basis to ensure olfactory function assessment is included as parts of routine evaluation of patients with CKD, with the aim of improving their overall well-being and quality of life.”

How very interesting. Therefore, if your kidneys become worse, so does your sense of smell. But why? Wait a minute. I never received an evaluation of my sense of smell at my nephrologist’s. Have you?

Let’s go back to seeing if we can figure out why our sense of smell is somehow attached to our kidney function. This is PubMed’s contribution to our search:

“Olfactory receptors (ORs) are chemosensors that are responsible for one’s sense of smell. In addition to this specialized role in the nose, recent evidence suggests that ORs are also found in a variety of additional tissues including the kidney. As this list of renal ORs continues to expand, it is becoming clear that they play important roles in renal and whole-body physiology, including a novel role in blood pressure regulation.”

As usual [Ah, you know me so well.] I needed more:

Science Digest included this information that may help:

Nefrologia (English Edition) points out the key points about loss of smell in kidney disease;

“Alterations in the olfactory function of patients with CKD in pre-dialysis, PD and HD are common, although little recognised.

• •

The tests most widely used for assessing olfactory function are odour threshold, discrimination and identification tests.

• •

One of the most important consequences of olfactory deficits is their association with the patient’s nutritional status.

• •

The effect of HD on smell is still not fully understood, as not all studies have shown correction of the deficit with treatment.

• •

Renal transplantation corrects dysosmia….” [Gail here. This is an altered perception of smell.]

While I find this fascinating, I wondered why it was important. The National Kidney Foundation had the answer:

“’Impairments in smell and taste have been linked with decreased appetite and food intake and can decrease the quality of life for affected patients,’ said Katherine Lynch, MD, a junior faculty member at Beth Israel Deaconess Medical Center. ‘The ability to smell and taste declines with age, but patients with chronic kidney disease tend to have earlier and greater decline in these senses than patients without kidney disease.’”

Dr. Lynch is studying the effects of smell and taste loss in order to identify ways to combat malnutrition and improve the lifestyle of patients with kidney disease. Her research is being supported by a Young Investigator’s Grant from the National Kidney Foundation.”

Umm, who said anything about taste. Let’s take a look at that, too. Kidneywise blew me away with their informative chart:

“Changes in CKD	Effects of change
Reduced saliva flow	Some studies have found that people with end-stage kidney disease have a reduced flow of saliva which may be caused by changes in fluid status. This can cause dry mouth which affects the taste buds.
Changes in saliva pH	Normal saliva is slightly acidic but some studies have shown that the saliva of people with end-stage kidney disease is more alkaline which can affect taste.
High levels of urea in saliva	People with end-stage kidney disease have higher levels of urea in their saliva than those with normal kidney function. This affects the perception of bitter taste, causing either an increase or a decrease in perception of bitter taste. It can also cause a metallic taste.
High levels of sodium in saliva	This can increase the salt taste threshold and can therefore cause a salty taste.
High levels of bicarbonate in saliva	This can cause a reduction in the intensity of savoury (umami) taste and may be one of the reasons for lack of interest in meat in many people with CKD.
High levels of  potassium in saliva	This can cause a metallic taste.
Lower levels of zinc in blood	Zinc deficiency can be as high as 40% in those receiving haemodialysis treatment. Zinc deficiency can lead to a reduction in overall taste.”

I started wondering if they had the same kind of chart for loss of smell. No such luck. On to how to treat loss of taste due to kidney disease. I crossed the pond [so to speak] and found what I was looking for on the National Health Service’s website:

“Food tastes
If your food tastes.	Tips
Bitter	Avoid foods sweetened with saccharin – this can leave a bitter aftertaste
Metallic	Gargle lemon juice before eating   Use plastic cutlery
Sweet	Add lemon juice to your water   Dilute drinks with soda or mineral water   Use spices such as ginger, nutmeg, and cinnamon to sugary foods/puddings to offset the sweetness
Salty	Avoid salty and processed foods   Add a pinch of sugar to food before serving
Aversion to meat/protein foods	Serve cold meats with pickle or chutney   Serve fish, chicken, and egg dishes with strong flavoured sauces i.e., curry, sweet and sour   Marinate meat in fruit juice or wine

More ideas to help you manage taste changes:

• Rinse your mouth or clean your teeth before meals.
• Suck on mints or chew gum.
• Use herbs and spices to add flavour e.g., pepper, cumin, and rosemary.
• Allow hot foods to cool down.
• If you are prescribed nutritional supplements, your dietitian may be able to recommend a sharper tasting variety, such as a juice or yoghurt style supplement.”

Well, that’s enough to absorb in one sitting. Let me know if you have specific questions and I’ll do my very best to answer them.

Until next week,

Keep living your life!

That’s Low

Just when I wonder if I’m going to run out of topics to write about, I receive a reader’s request. This week, I was saved by a request to write about low anion gap. I know, I know, it sounds like we’re pioneers trekking our way across the mountains when you see that phrase out of context. So, let’s put it into context.

If you looked, you’d find the phrase included in the following blood tests according to the Cleveland Clinic:  

“The anion gap measurement is based on the results of individual electrolyte blood tests, which are commonly included in the following routine bloodwork panels:

• Comprehensive metabolic panel (CMP).
• Basic metabolic panel (BMP).
• Electrolyte panel.”

Let’s do our usual backtracking a bit. My first stop was at Quest Health to find out what the CMP covers:

“This test is a useful tool containing routine screening tests that may help healthcare providers identify signs of certain medical conditions, such as kidney or liver disease, diabetes, hypertension, and other health conditions.

Glucose

Calcium

Total protein

Alanine aminotransferase

Aspartate aminotransferase

Alkaline phosphatase

Bilirubin

Blood urea nitrogen

Creatinine

Albumin

Carbon dioxide

Chloride

Potassium and sodium”

Hmm, no mention of the anion gap here.

Let’s try a different site, MedlinePlus, to see what the BMP tests for:

“A basic metabolic panel (BMP) is a test that measures eight different substances in your blood. It provides important information about your body’s chemical balance and metabolism. Metabolism is the process of how the body uses food and energy. A BMP includes tests for the following:

• Glucose, a type of sugar and your body’s main source of energy.
• Calcium, one of the body’s most important minerals. Calcium is essential for proper functioning of your nerves, muscles, and heart.
• Sodium, potassium, carbon dioxide, and chloride. These are electrolytes, electrically charged minerals that help control the amount of fluids and the balance of acids and bases in your body.
• BUN (blood urea nitrogen) and creatinine, waste products removed from your blood by your kidneys.”

Again, no mention of the anion gap. Surely, the electrolyte panel will evaluate the anion gap. This time I turned to GoodRxHealth:

“An electrolyte panel (also referred to as a ‘metabolic panel’) measures electrolytes and other substances in the blood that play important roles in your overall health. These include:

• Sodium (Na): plays a key role in fluid balance and brain function
• Potassium (K): regulates the heartbeat as well as nerve and muscle activity
• Chloride (Cl): contributes to fluid balance and acid-base levels in the blood
• Carbon dioxide (CO2): indicates how well your body is maintaining the right acid-base balance
• Blood urea nitrogen (BUN) and creatinine (Cr): two waste products that provide a measure of kidney function
• Glucose: also known as ‘blood sugar’”

What! Again, no mention of anion gap. Although, you may have noticed lots of duplication for items measured among the tests. That is sort of helpful. But that’s it! I’m turning to my favorite dictionary of all time, the Merriam-Webster to see if I can find a definition for this elusive phrase. Uh-oh, nothing there. [Oh well, you can’t find everything there just because it’s my favorite.]

The University of Rochester Medical Center was much more to the point:

“Your blood contains sodium, chloride, and bicarbonate. All of these are charged particles. The value for the anion gap tells your healthcare provider something about which other charged particles must be in your blood to make it neutral.

This test gives clues about different types of acidosis, when your blood is too acidic. It also tells your provider about alkalosis, when your blood is not acidic enough. Acidosis and alkalosis can be life-threatening. It’s important to find the causes and treat them as soon as possible.”

Finally. Now we get to the good part. What does a low anion gap mean? WebMD to the rescue:

“If you really do have a low anion gap, it could mean your blood doesn’t have enough of a protein called albumin. Albumin helps important vitamins, hormones, and enzymes move throughout the body. Low albumin can be a sign of:

• Kidney problems. Healthy kidneys block albumin from entering urine. When albumin is leaked into the urine, it may be a sign of kidney disease.
• Heart disease. Heart disease, when treated with diuretics, may lead to alkalosis and low albumin.
• Certain types of cancer . Cancer may cause potassium levels in the blood to drop, causing alkalosis. Chemotherapy cancer treatments may also lead to lower potassium levels.
• Liver disease. The acid—base balance in liver disease is complex. Your doctor may check look for respiratory alkalosis, metabolic acidosis, low albumin, and changes in your potassium levels.”

Wonderful, just wonderful. What are you supposed to do with that? Before you get upset, I ran across this very important warning on MedicalNewsToday:

“A low anion gap reading is very rare, and it often results from a laboratory error. As a result, a doctor who finds a low reading typically orders a second test.”

Add this information from Health Matters and I think we can start to make the connection between the kidneys and the anion gap:

“Our body chemistry consists of a never-ending cascade of molecules reacting with one another to make more complex molecules. A few are commonly familiar: sodium, potassium, and chloride. These can be further classified by their electrical charge. Sodium and potassium are positively charged and are referred to as cations; chloride is negatively charged and is referred to as an anion. An anion gap refers to the measured difference between cations and anions in serum, plasma, or urine….”

It seems low anion gap is very rare and could be due to lab error. If it’s confirmed, your doctor will have to test more to determine what is causing this condition before they can treat it. Notice kidney disease can cause low anion gap as well as some medications can. This was all new to me. I certainly hope it was helpful to the reader requested the information.

I very much appreciate reader comments telling me how interesting they find the blogs. Just remember that I’m not a doctor. I’m learning right along with you.

Until week,

Keep living your life!

Tipsy Is as Tipsy Does

I don’t drink. I just don’t like the taste of liquor. My husband doesn’t drink. It interferes with his medication. My young friend doesn’t drink. She’s breast feeding. Her cousin doesn’t drink. He’s allergic to alcohol. There’s another reason people don’t drink: they have chronic kidney disease.

I wanted to know how that worked, so learn along with me. My first stop was at the ever-trustworthy Healthline. By quoting the National Kidney Foundation, Healthline made it clear that drinking alcohol may affect healthy kidney function too and lead to CKD:

Photo by Chris F on Pexels.com

“At first, you might not have any symptoms of kidney damage from regular alcohol consumption. As the kidneys become overworked from heavy alcohol consumption, they will be less able to filter blood and maintain the correct water balance in the body.

As a result, you may experience the following symptoms:

• fatigue
• swelling of the legs, ankles, and feet due to fluid retention
• loss of appetite
• change in urine
• kidney pain”

Oh my. If that’s what can happen to healthy kidneys, what can happen to our damaged kidneys?

The National Kidney Foundation had a simple answer for us:

“Drinking alcohol affects many parts of your body, including your kidneys. A little alcohol—one or two drinks now and then—usually has no serious effects. However, excessive drinking–more than four drinks daily—can affect your health and worsen kidney disease. When experts talk about one drink, they are talking about one 12–ounce bottle of beer, one glass of wine, or one ounce (one shot) of ‘hard liquor.’”

I found that surprising because I had assumed all liquor was a no-no for CKD patients. My brother used to tell me repeatedly, “Assuming makes an ass out of you and me.” I guess he was right. Thanks, Paul.

Fresenius Kidney Care, [dialysis centers], explained more:

“Healthy kidneys work to remove excess waste, toxins, and fluid from your blood. When functioning properly, alcohol is one of the toxins that your kidneys filter from your body. However, alcohol can dehydrate your system, impairing your kidneys’ ability to function and maintain the right balance of fluids in your blood. Excessive alcohol consumption can also weaken or damage your kidneys, preventing them from filtering your blood properly. Drinking alcohol excessively can also increase your blood pressure, which over time, can cause damage to your kidneys.”

While all of this was interesting, it didn’t really get to the nitty-gritty of what alcohol does to the kidneys. It occurred to me that I could approach this from the other side, so I went to Recovery by the Sea’s website, an alcoholism recovery center, to see what they had to say about alcohol’s affect on the kidneys.

“Alcohol is one of the toxins that kidneys filter from the blood. While a drink or two on occasion is not going to be problematic, binge drinking and excessive, chronic drinking is likely to wreak havoc on the kidneys. Alcohol interferes with the kidneys’ toxin-filtering capability, thereby setting the stage for damage and an increased risk of health complications.

In addition to the kidneys’ ability to filter toxins, they also help maintain the right amount of fluid in the body. Alcohol has a dehydrating effect, one that markedly impairs the kidneys’ capacity to maintain fluid balance.

Another adverse effect of alcohol consumption on the kidneys is related to blood pressure. Drinking alcohol in excess can result in an increase in blood pressure both temporarily and over time. Alcoholics are more likely to have hypertension than those who drink moderately or not at all. Eventually, this can lead to chronically elevated blood pressure and is one of the most common causes of kidney disease.

It’s well-known that there’s also a risk of developing liver disease as a result of chronic drinking. The kidneys need adequate blood flow maintained at a certain level to filter the blood properly. Among alcoholics and persons with liver disease, the delicate balance of blood flow and blood filtering by the kidneys is disturbed.”

Did you know that alcohol may also be part of the problem in developing kidney stones? I didn’t until I read the following on The Asian Institute of Medical Sciences:

“The more you drink alcohol, the greater the chances of your getting kidney stones. The reason is very simple. Substituting alcohol for water can dehydrate you as it acts as a diuretic. You can prevent getting kidney stones by drinking copious quantities of water. Substituting water with alcohol would be counterproductive as your body would be constantly losing water. If your diet has too much salt in conjunction with high alcohol consumption, then your chances of developing kidney stones increase as it causes greater quantity of calcium in your urine. Further, you need to avoid foods high in phosphates like beans, dairy products, and nuts; and those which are high in oxalate, such as potato chips, French fries, beets, spinach, and nuts like the plague if your uric acid level is high. This combination of calcium and oxalates leads to the formation of renal calculi.
Alcohol might adversely affect magnesium exchange in the kidney tubules caused by a marked increase of magnesium excretion in the urine, leading to hypomagnesemia.”

KIdneyCareUK’s Kidney Kitchen has some sound advice for us:

“If you regularly drink as much as 14 units per week, it’s best to spread your drinking evenly over three or more days.

If you have one or two heavy drinking episodes a week, you increase your risk of death from long-term illness and injuries. Try to have several alcohol-free days over the week.

Avoid becoming dehydrated by making sure you consume non-alcoholic drinks in between the alcohol-containing ones.

Choose water, soda water, diet fizzy drinks (avoiding cola-style drinks) or no-added-sugar squash as healthier alternatives.

Red wine contains a little more potassium than white, so consider white wines rather than a glass of red with your meal if you are on a low-potassium diet.

Spirits are low in potassium and phosphate as well as lower in volume, so a good option if you need to restrict your fluid, but be mindful of the units. Consider using diet mixers or soda water if you have diabetes or are trying to lose weight (avoiding cola-style mixers due to their phosphate additive content).

Many wines, beers and lagers contain added phosphates and ciders are high in potassium so be mindful of this if you have been advised to lower potassium and/or phosphate in your diet.

Remember to incorporate other fluids you may be having into your fluid allowance, such as gravy, soups, ice creams, custards, creams and yoghurts.

For people with diabetes and CKD, alcohol may be safe to drink if you have your blood sugar level under control.

It’s always wise to check with your doctor or dietitian before incorporating alcohol into your diet and it is recommended that you combine your alcohol with food. Alcohol on an empty stomach can cause blood sugar levels to drop in those with diabetes. Additional ingredients in mixed drinks may also add carbohydrate that must be considered.

Finally, if you want to drink alcohol, please discuss this with your pharmacist and doctor as some medications do interact with alcohol.”

For a non-drinker, I now know more about alcohol than I’d ever wanted to. It’s worth it if you learned as much as I did.

Until next week,

Keep living your life!

And So It Begins

I was looking for some notes I’d made for today’s blog and couldn’t find them. Okay, so my office is being rearranged. After a few minutes of my kind of cursing [quite inventive, if I do say so myself], I accepted that I would just have to recreate them. Certainly not from memory since chemo brain and chronic kidney disease brain fog share the space in my brain. Yep, I was going to go back to the internet and research the topic all over again. 

Photo by Francesco Ungaro on Pexels.com

But I didn’t. I stumbled upon some information that blew me away. I had never wondered about this, not even a little. What is it, you ask. Let me answer your question with a question: Have you ever wondered how your kidneys came to be? That’s the information I stumbled upon, and it fascinated me. We’ll probably have to rely on quite a few definitions, but it’s still worth exploring. I’ll place the definitions in brackets next to the word being defined. They were gathered from my own brain and various sources. 

Duke Medical’s site is what sparked my interest: 

“Ascent of the kidneys 

The kidneys initially form near the tail of the embryo. 

Vascular buds from the kidneys grow toward and invade the common iliac arteries [the ones that carry blood to the lower extremities]. 

Growth of the embryo in length causes the kidneys to ‘ascend’ to their final position in the lumbar [the lower spine and the part of the back near it] region. 

Rather than ‘drag’ their blood supply with them as they ascend, the kidneys send out new and slightly more cranial [Of or relating to the skull or cranium] branches and then induce the regression of the more caudal [a. Of, at, or near the tail or hind parts; posterior: the caudal fin of a fish. b. Situated beneath or on the underside; inferior.] branches.  

This is a highly regimented procedure. What if something goes awry? What could happen then? Back to Duke Medical for some possible answers:  

“A. Duplication of the urinary tract 

Occurs when the ureteric bud [what eventually becomes the ureter] prematurely divides before penetrating the metanephric blastema [the other part of the embryo that becomes part of the kidney, usually the nephrons]. 

Results in either a double kidney and/or a duplicated ureter and renal pelvis [“The renal pelvis is a chamber where all the urine-forming ducts meet and further routes urine to the urinary bladder.” Mansi Kohli.] 

B. Renal-Coloboma syndrome 

The Pax2 gene essential for metanephric mesenchyme [later to become nephrons, the filters in your mature kidneys] to differentiate into epithelial tubules [“Renal tubular epithelial cells are resident cells in the tubulointerstitium [connecting tissue between the cells in the tubules] that have been shown to play crucial roles in various acute and chronic kidney diseases.” National Library of Medicine.]  in response to inductive signals from ureteric bud, so mutations (even if HETEROZYGOUS [Two variations of a gene on the same locus of a chromosome]) can produce renal defects.  Patients typically exhibit the following symptoms: 

Renal hypoplasia [incomplete development] – due to reduced proliferation of the mesenchyme [tissue found in organisms while they develop] derived epithelia [body tissue that covers all surfaces of your body, inside and out] during development. 

Vesicouretral Reflux [Urine flows backwards up into the kidneys and ureters from the bladder] – most likely due to improper connection of the ureter to the bladder or possibly due to inherent defects in epithelial cells of the mature ureter.              

Colobomas (ventral fissures in iris, retina, and/or optic nerve) – due to failure of the optic fissure to fuse (expression of Pax2 is observed in ventral part of the optic cup and optic stalk). 

C. Nephroblastoma (Wilms Tumor) 

found in infants from 0-24 months of age 

consists of blastemal [a mass of cells that is capable of becoming an organ or appendage], epithelial, and stromal [supporting tissue] cell types 

associated with mutations in genes related to kidney development (PAX2, WT1, etc.) 

essentially due to incomplete mesenchymal-to-epithelial transformation (i.e. the cells fail to fully differentiate and transform into cancerous cells). 

D. Polycystic kidney disease 

can arise due to a variety of factors: 

loss of polarity: aberrant differentiation of tubule cells results in inappropriate location of Na/K [sodium/potassium] channels to the apical [apex] (rather than basal [base]) domain of the cells.  Na+ is pumped apically, water follows resulting in dilation of tubule lumens [part of the nephrons, have no red blood cells]. 

Overproliferation: excessive growth of tubule epithelium can occlude the lumen causing blockage.” 

You have been incredible today reading a blog with all the definitions stuck in the descriptions. Thank you for bearing with me on that. I feel the mystery has been solved. I hope you do, too. Knowing how kidneys are formed, believe it or not, makes me feel more appreciative of them – even though I was already very appreciative of them. 

With the holidays coming up, I’m going to be that nag who reminds you to take care of your kidneys. Watch your renal diet. Get adequate sleep. Try not to smoke or drink. Exercise even though you don’t want to. And most importantly of all, don’t let the stress get you. Avoid it, minimize it, do whatever you can to stay … without smoking or drinking. 

The next blog will be on the 19^th, which means it will be during Chanukah. Christmas and Kwanzaa won’t be far behind. Have I left out whatever holiday you observe? Let me know. Hmm, maybe next week’s blog should be about holiday meals. 

Until next week, 

Keep living your life! 

Oh, Those Dimples

 Most often when you see a doctor, he or she will press your leg with one of his fingers, look at the indent made that quickly pops back to normal, and murmur, “Hmmm.” That’s what my rheumatologist did last time I saw her, only she didn’t say, “Hmmm.” She said, “Look at that, Gail.” Uh-oh. 

I looked… and saw the indent still there. I know what that meant: edema. My favorite dictionary since high school almost 50 years ago, Merriam-Webster, defines edema for us: 

“an abnormal infiltration and excess accumulation of serous fluid in connective tissue or in a serous cavity 

 called also dropsy” 

So that’s what dropsy is. I’d always wondered.  

Back to the matter at hand. What does edema have to do with chronic kidney disease – if anything. 

Comprehensive Vascular Care, a practice in Michigan, offered some facts new to me: 

“It’s also linked to two other major diseases: 1 in 3 adults with diabetes and 1 in 5 adults with high blood pressure may also have kidney disease. All three conditions can lead to edema (swelling) in the legs.” 

I realized when I read this that my endocrinologist, primary care doctor, and nephrologist also always checked for edema. How did I not know the connection between their specialties and edema? After having written the blog for over a decade, it occurs to me that you may not know, either. Let’s find out together. 

We know the simple test of pressing a finger into your leg to determine if edema is present. MediceNet tells us there are other tests which may be used to figure out if you have edema: 

“X-ray 

Electrocardiogram (EKG) 

Blood tests 

Urinalysis (urine test)” 

Let’s say it is found that you have edema. Sure, it may be associated with your ckd, high blood pressure, or/and diabetes, but how? 

“You probably know your kidneys help eliminate fluids from your body through urination. But, kidneys also filter fluids, removing excess waste products from your blood. If your kidneys don’t work properly, fluid can get trapped in your body. Some waste products, such as sodium, can cause fluid to get trapped in your soft tissues and cause swelling under your skin.  

Kidney disease can cause swelling — or edema — anywhere in the body, but it’s most common in the feet, andkles [sic], and lower legs — all areas affected most by gravity. Some people also have swelling in their hands or face.  

If there’s a lot of swelling, you might notice that when you press the swollen skin with your finger, the area stays dimpled or ‘pitted’ even after you remove your finger. This is sometimes called pitting edema, and it’s typically associated with more severe edema.  

If your tissues continue to swell, this will put more pressure on your skin, and your skin may look shiny or taut in the affected areas. Your skin may also be more prone to cuts and sores because it’s stretched out. Some people develop skin ulcers, which are deep sores that take a long time to heal.” 

Thanks to Houston Kidney Specialist Center for the above information. 

By the way, let’s not forget that high blood pressure and diabetes are the two leading causes of ckd. 

Oh, the dimpling is more severe than I’d thought. Let’s see what else might cause edema. Nephrology Specialists of Tulsa helps out here: 

“Edema has many causes, some much more serious than others. It can result from standing or walking in excessive heat; sitting for prolonged periods; eating too much salt; getting sunburned; or being premenstrual or pregnant. More serious causes of edema include the following: 

Lymph-node problems (particularly after a mastectomy) 

Certain medications 

Venous insufficiency 

Congestive heart failure 

Cirrhosis 

Kidney disease 

Chronic bronchitis or emphysema 

Infection, injury or allergic reaction 

A lack of protein in the diet can also cause edema” 

While that’s interesting, I still want to know what it is in the kidneys specifically that causes edema. 

I found one answer on the Mayo Clinic’s site: 

“Nephrotic syndrome is a kidney disorder that causes your body to pass too much protein in your urine. 

Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. The condition causes swelling, particularly in your feet and ankles, and increases the risk of other health problems.” 

Johns Hopkins Medical had more of the detail I was looking for: 

“Nephrotic syndrome results from damage to the kidneys’ glomeruli. These are the tiny blood vessels that filter waste and excess water from the blood and send them to the bladder as urine. 

Your glomeruli keep protein in the body. When they are damaged, protein leaks into the urine. Healthy kidneys allow less than 1 gram of protein to spill into the urine in a day. In nephrotic syndrome, the glomeruli let 3 grams or more of protein to leak into the urine during a 24-hour period.  

Nephrotic syndrome may happen with other health problems, such as kidney disease caused by diabetes and immune disorders. It can also develop after damage from viral infections. 

The cause of nephrotic syndrome is not always known.” 

So, what do we do about edema? According to National Health Service of the UK: 

“You may be advised to reduce your daily salt and fluid intake, including fluids in food such as soups and yoghurts, to help reduce the swelling. 

In some cases you may also be given diuretics (tablets to help you pee more), such as furosemide. 

Side effects of diuretics can include dehydration and reduced levels of sodium and potassium in the blood.” 

Okay, that’s just a bit confusing since as ckd patients who are not on dialysis, we are usually advised to drink plenty of water. 

I just pressed my thumb into my leg. No dimple! Why don’t you try it on yourself? 

Until next week, 

Keep living your life! 

It’s Seasonal

Now that I’m getting older [oh, all right, old], I see loads of specialists for my comorbidities. One of them, my rheumatologist, has mentioned several times that eGFR is lower in the summer and higher in the winter. I wondered why, but she’d already gone on to discussing my arthritis by the time I formulated my question. It seems like now is a good time to answer that question. Want to explore it with me? 

A few reminders first. According to Medical News Today: 

“A rheumatologist is an internal medicine doctor who specializes in diagnosing and treating inflammatory conditions that affect the joints, tendons, ligaments, bones, and muscles. 

Rheumatologists diagnose and treat musculoskeletal conditions, but they do not perform surgery.” 

I started seeing her for osteoarthritis decades ago. 

And eGFR? SelfCode, a site that is new to me which helps you decode your lab results, has that covered: 

“Glomerular Filtration Rate (GFR) is the amount of blood filtered every minute by tiny filters in the kidneys called glomeruli. Although it may sound complicated, in essence, it measures how well your kidneys are working….” 

Ready to explore the seasonal up and down of eGFR now? The first site that I could understand [Let’s remember I’m not a doctor and never claimed to be one.] which explained the connection between eGFR lowering during the summer was from the European Renal Association.  

Photo by Ketut Subiyanto on Pexels.com

“In general, our body has various ways of regulating the body temperature and releasing excess heat. The best-known method is through sweating. If the temperature control centre in our brain, known as the ‘hypothalamus’, detects that our comfort body temperature of 37 degrees [That’s Celsius; it’s 98.6 Fahrenheit.] exceeded, the sweat glands in the skin are stimulated to produce more. We consequently give off heat by ‘evaporating’ the sweat on the surface of the body. In addition, the body dilates our skin vessels. The heart pumps more warm blood into the dilated skin vessels, which also dissipates heat. 

The increased sweating naturally leads to a loss of fluid and important body salts, the so-called electrolytes. The lack of fluid and the heat-induced widening of the vessels lead to a drop in blood pressure. The heart no longer pumps enough blood through the body and the kidneys,” explains Professor Dr. Christoph Wanner, Head of Nephrology at the German University Hospital in Würzburg and President of the European Renal Association (ERA). ‘If you don’t compensate for this fluid loss, you become dehydrated. This can result in kidney failure. The risk to develop urinary stones and urinary tract infections is also bigger when the body is dehydrated.’” 

Now this may look like it doesn’t address the question, but remember we need to keep hydrated to keep the eGFR up. Increased sweating is a factor. Losing fluid and electrolytes is a factor. Widening of the vessels is a factor. A drop in blood pressure is a factor. The kidneys not receiving enough blood is a factor.  

Well, it seems my rheumatologist is right about lower eGFR in the summer. Wait a minute. That means she’s correct about a higher eGFR in the winter. Logically, if something is lower in some instances, it’s higher in others. Medically, we can work this backwards. 

If the kidney disease patient is not abundantly sweating, then they are not losing fluid and electrolytes. If they are not losing fluid and electrolytes, their blood vessels are not widening. If their blood vessels are not widening, their blood pressure is not dropping. If their blood pressure is not dropping, the kidneys are receiving enough blood. If the kidneys are receiving enough blood, your eGFR will be higher than it would be if none of this were the case. Voila! There we have a higher [than summer] eGFR in the winter. 

I thought it was interesting that blood pressure is also usually lower during the summer. The Mayo Clinic has the information on this: 

“Blood pressure can be affected in summer weather because of the body’s attempts to radiate heat. High temperatures and high humidity can cause more blood flow to the skin. This causes the heart to beat faster while circulating twice as much blood per minute than on a normal day. 

The greatest risks are when the temperature is above 70 degrees F and the humidity is more than 70%. The higher the humidity, the more moisture in the air. 

Some people are at higher risk of being affected by humidity, including people over 50; those who are overweight; or those who have heart, lung or kidney conditions. 

Heat and sweating also can lower the amount of fluid in the body, which can reduce blood volume and lead to dehydration. This can interfere with the body’s ability to cool off and may create strain on the heart. 

Other risk factors include: 

• Adults with heart, lung and kidney problems 
• Seniors who follow a low-salt or low-sodium diet 
• People who have a circulatory disease or problems with circulation 
• Adults who take diuretics, sedatives and blood pressure medication” 

Well now I understand why I thought I was going to pass out in Cuba. I live in Arizona, which has very low humidity. Cuba is high humidity. Lots of sweating going on at the time. Lots of drinking water, too, but apparently not enough.  

We knew that high blood pressure could cause chronic kidney disease. Now we know that low blood pressure can affect your CKD. 

Until next week, 

Keep living your life! 

That Delicious All-American Italian Food: Pizza

Last night, my grandson had pizza for dinner along with his vegetables and fruit. We were facetiming with him during his dinner. So, then Bear wanted pizza for dinner. I hesitated. Wasn’t even good pizza junk food? And, therefore, not on the renal diet? Why isn’t it, I wondered because I like pizza, too. 

Pepperoni, Sausage, And Black Olive Thin Crust Pizza by Jennifer Bourn is licensed under CC-CC0 1.0

Verywellfit, a nutrition and exercise site, offers the following information about one slice of pizza: 

“The following nutrition information is provided by the U.S. Department of Agriculture (USDA) for one slice (107g) of regular cheese pizza from a standard fast-food pizza chain… 

• Calories: 285 

• Fat: 10.4g 
• Sodium: 640mg 
• Carbohydrates: 35.6g 
• Fiber: 2.5g 
• Sugars: 3.8g 

• Protein: 12.2g” 

Since we are chronic kidney disease patients, let’s start with the obvious. Yes, sodium. The Ontario Renal Network suggests 2000 mg. of sodium a day for us, but also suggests we speak with our nephrologists or dietitians for a more specific individualized number. For example, men are often permitted more sodium since they have larger bodies. But that, too, is a generalization. 

I don’t know about you, but I find it hard to eat only one slice of pizza. Two slices have 1,280 mg. of sodium. That’s already 60% of my sodium intake! Don’t forget I’ll be eating two other meals, a bedtime snack [I’m a diabetic] and have sides with my pizza. 

And protein? What about protein? The usual limitation for chronic kidney disease patients is five ounces. Again, this is a generalization. Your nephrologist or dietitian will be able to individualize the amount of protein you can safely have each day. Five ounces equals about 141,748 grams. Two slices of pizza – plain, cheese pizza – only has 24.4 grams of protein. But how many of you eat plain, cheese pizza? Bear adds meatballs, ham, bacon, Italian sausage, and pepperoni [No, I don’t eat any slices from his half.]. Add up the grams of protein. I’m pretty sure the add ons will either wipe out or greatly reduce the amount of protein you can have in your other meals the day you have pizza. 

Photo by Nataliya Vaitkevich on Pexels.com

As a diabetic, I need to limit my lunch and dinner carbohydrate intake to 45 grams per meal. Two slices of pizza equal a carbohydrate intake of 71.2 grams. Since the main thrust of the diabetes diet is to keep your blood sugar on a steady level, going that far over my carbohydrate limit for lunch or dinner is going to cause a blood glucose spike. For those of you who like cold pizza for breakfast [Who? Me?], the diabetic carbohydrate limit for breakfast is 30 grams. Even if you have only one slice, you’re already over your breakfast limit for carbohydrates. 

I don’t even want to start on sugar intake as a diabetic. In and of itself, the 7.6 grams of sugar in two slices of pizza is not necessarily a problem except that again – you have to eat two other meals and a snack. They, also, are going to contain sugar and you probably don’t know how much until you decide what to eat for that particular meal. Let’s remember what the Nation Kidney Foundation has to say about diabetes: 

“Over time, having high blood sugar from diabetes can cause damage inside your kidneys. As a result, they filter out some good things along with waste. As more damage happens, kidneys will have less function and waste builds up.” 

For those of you without diabetes or CKD, diabetes is the leading cause of CKD. Avoid it by all means.   

I would say the fiber is a good thing. It seems most of us don’t eat enough fiber. Too little fiber may lead to constipation. As DaVita puts it: 

“Many people with CKD don’t get enough fiber, because many fiber sources are too high in potassium and phosphorus [Gail here: These are two electrolytes that are also limited on the renal diet]. Increasing your fiber intake, [sic] can cause gas, bloating and cramps.” 

DaVita, a CKD education and dialysis company, has a good list of foods that both contain fiber and are on the kidney diet. 

Photo by RODNAE Productions on Pexels.com

As for fat, I wasn’t too sure about what role that plays in your diet, so I turned to the American Kidney Fund for help: 

“Fat gives you energy and helps you use some of the vitamins in your food. You need some fat in your eating plan to stay healthy. Too much fat can lead to weight gain and heart disease. Limit fat in your meal plan, and choose healthier fats when you can, such as olive oil.” 

But then there’s more on the plus side of fat: 

“When we first look at a pizza, it might appear to be high in fat content. Again, research has shown that the fat content of most pizza rarely exceeds the 10% level. Compare this to a piece of steak with upwards of 20% fat, and you begin to realize just how good pizza really is. On top of all this, because vegetable oil, olive oil, and oil-based shortenings are commonly used in the crust formulation, pizza and pizza products (calzone, stromboli, and bread sticks) are good sources of polyunsaturated fat, with only modest cholesterol contributions (through meat and cheese toppings) to the diet.” 

Thank you to PMA Pizza Media, a pizza trade vehicle, for the above information. 

And finally, the caloric intake, which is a whopping 570 calories [about 46 minutes of running for goodness sake!] for two slices. Your calorie intake limitation for CKD is highly individualized, so let’s make things easy and use my 1350 to 1450 restriction. Should I eat those two slices of delicious cheese pizza [which would really be a vegetable pizza for me raising the number of calories even more], I have just eaten almost half of my caloric intake for the day. Do I – or you – really love pizza that much? I have to admit I do, although I don’t have pizza too often. 

This was fun, taking pizza apart and then putting it back together again. I suspect you’ll find another blog dealing with what is usually considered sort of a junk food soon. I’ve got to admit I’m not so sure this is a junk food anymore. 

Until next week, 

Keep living your life! 

What’s Your Superpower?

Last week, I mentioned that my renal/diabetes dietician had suggested Magic Spoon cereal since it’s low carbohydrate. I didn’t care for it. Marc Hernandez of Uhling Consulting was surprised, since he and his family really liked it. We tried to figure out why I didn’t. Then Marc hit on something. Maybe I was a super taster. Oh goody, a new concept for me. 

Let’s get a definition for super taster before we go any further. According to Healthline, a super taster is 

“… a person who tastes certain flavors and foods more strongly than other people.” 

Well, that’s obvious. We need more. And that’s what I discovered on LiveScience: 

“… The tally of little mushroom-shaped projections on the tongue, called fungiform papillae, reveals a person’s tasting prowess or deficit.  

Nestled within the walls of these tiny bumps are our taste receptors, called taste buds, which register the five currently recognized tastes: bitterness, saltiness, sourness, sweetness and umami (savoriness). Touch receptors in the fungiform papillae also help us ‘feel’ our food’s texture and temperature.  

The application of blue food coloring makes the papillae easier to count. In a 6-millimeter diameter circle, which is ‘about the size of a hole punch,’ Bartoshuk said, supertasters can have as many as 60 fungiform papillae packed into the small space; nontasters can have as few as five.” 

Wait, there’s more information from the discoverer and coiner of the term super tasters from CBC Radio:  

“In Bartoshuk’s research, she found that 25 per cent of people are incredibly sensitive to a bitter tasting chemical known as 6-n-propylthiouracil, or PROP. Another 25 per cent, deemed non-tasters, can’t detect PROP at all, she says, while the remaining 50 per cent are considered average tasters. 

While affixing super to anything sounds great, being a supertaster can actually be quite difficult, says Bartoshuk, who coined the terms supertaster and non-taster. 

Supertasters are differentially more sensitive to bitter. Having more tastebuds means there are also more pain receptors, and that’s why supertasters often can’t handle spicy foods and generally avoid anything bitter. As a result, they are often seen as picky eaters. 

However, their aversion to bitterness is evolutionary, says Bartoshuk. 

‘Supertasters are differentially more sensitive to bitter’ than the average person. 

Bartoshuk says there are 25 different bitter genes expressing 25 different bitter receptors. 

‘Why would nature do that? Because bitter is our poison detection system.’” 

So, do I feel honored or cursed to possibly be a super taster? I think I need more information. 

Wow! While more testing is needed, I found this article on National Geographic encouraging: 

“Henry Barham, a rhinologist at the Baton Rouge General Medical Center, in Louisiana, published a study in the medical journal JAMA Network Open on May 25 that analyzed nearly 2,000 patients and found that ‘supertasters’—individuals who are overly sensitive to some bitter compounds—were less likely to test positive for the virus. If this association holds true, it implies, for example, that people who don’t find broccoli too bitter are in a higher risk group for severe COVID-19. 

‘This is a very interesting study that suggests that receptors on our tongue that allow us to sense bitter flavors are also linked to our vulnerability to respiratory infections like COVID-19,’ says David Aronoff, director of the division of infectious diseases at Vanderbilt University Medical Center, in Nashville, Tennessee, who was not involved with this research. That taste receptors may also be involved with immunity is surprising, he says…. 

According to Aronoff, the study has limitations. The relatively small number of adults examined were in a fairly narrow age range, so it’s not known whether the correlation between taste preferences and COVID-19 severity exists in children or the elderly. In addition, he says, the population studied may differ in unknown ways that influenced the results.” 

Hmmm, and that has to do with the renal diet or diabetes how? Back to Healthline for the answer: 

“Pros of being a supertaster: 

May weigh less than average or non-tasters. That’s because supertasters often avoid sugary, fatty foods that are often packed with calories. These flavors can be too overwhelming and unenjoyable, just like bitter flavors. 

Are less likely to drink and smoke. The bittersweet flavors of beer and alcohol are often too bitter for supertasters. Plus, the flavor of smoke and tobacco can be too harsh, too.  

Cons of being a supertaster 

Eat few healthy vegetables. Cruciferous vegetables, including Brussels sprouts, broccoli, and cauliflower, are very healthy. Supertasters often avoid them, however, because of their bitter flavors. This can lead to vitamin deficiencies. 

May be at a higher risk for colon cancer. The cruciferous vegetables they can’t tolerate are important for digestive health and helping lower the risk of certain cancers. People who don’t eat them may have more colon polyps and higher cancer risks. 

May have an increased risk for heart disease. Salt masks bitter flavors, so supertasters tend to use it on many foods. Too much salt, however, can cause health problems, including high blood pressure and heart disease. 

May be picky eaters. Foods that are too bitter just aren’t pleasant. That limits the number of foods many supertasters will eat.” 

Here are some reminders to help you see the connections.  

Pros: 

Obesity can lead to diabetes. Smoking and drinking can hasten your CKD. 

Cons: 

SALT! The bane of CKD. Also, being picky means you may not be fulfilling your nutritional needs and, instead filling up on foods that will only worsen your CKD and/or diabetes. 

After all this researching, I’ve come to the conclusion that I am not among the 25% of the population that are super tasters. Nor am I part of the 25% of non-tasters. Yep, I’m part of the 50% of average tasters. I just happen not to care for the taste of Magic Spoon. Again, that doesn’t mean you won’t. After all, Marc and his family like it. 

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 3

Here’s hoping you had a nice, quiet, safe July 4^th, Canada Day, or whatever holiday your country celebrates. Here’s hoping you were able to adhere to your renal diet, too. As I told one reader years ago when she was overwhelmed by the dietary changes she had to make, make one change at a time if you have to. You’ll get there. 

Let’s see now. This topic has definitely turned into a series instead of a two parter. In the last two blogs, I wrote about the three ‘p’s as I called them in my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. These are phosphorous, potassium, and protein. Guess that leaves the one ‘s’ in the renal diet. I made mention last week that sodium and salt are not exactly the same thing, so let’s look at that first.  

Thank you to WebMd for this explanation: 

“Sodium is a type of metal that is always found as a salt. The most common dietary form is sodium chloride. Sodium chloride is commonly called table salt. 
 
Table salt accounts for 90% of dietary sodium intake in the US. Sodium helps to balance levels of fluids and electrolytes in the body. This balance can affect blood pressure and the health of the kidneys and heart.”   

A usual restriction for CKD patients is 2000 mg./day. That’s where I am, too. Although, I have seen 2,300 mg./day for men.

Hmmm, how does sodium “affect blood pressure and the health of the kidneys and heart.” The more I blog, the more I want to know the how. I turned to The American Stroke Association: 

“’With the circulatory system, salt’s effects are a very simple plumbing problem,’ said Dr. Fernando Elijovich, a professor of medicine at Vanderbilt University. 

The heart is the pump and blood vessels are the pipes, he said. Blood pressure goes up if you increase how much blood has to move through the pipes. Blood pressure also rises if you shrink those pipes. 

Salt does both. When there’s excess salt in your system, the heart pumps more blood in a given time, boosting blood pressure. And over time, salt narrows the vessels themselves, which is the most common ‘plumbing’ feature of high blood pressure. 

The harm can come quickly. And over time. 

Within 30 minutes of eating excess salt, your blood vessels’ ability to dilate is impaired, Elijovich said. The damage from persistent high blood pressure shows up down the road, in the form of heart attacks, strokes and other problems. 

The good news, Laffer said, is the benefits of cutting back on excess salt also show up quickly. If you significantly reduce how much salt you eat, your blood pressure goes down within hours or days.” 

Wow, you can actually visualize this. 

Did you remember that high blood pressure is one of the leading causes of CKD? With CKD, your kidneys do not function well and filter out less sodium. This seems circular. You develop high blood pressure from too much sodium and then develop chronic kidney disease. Your kidneys no longer effectively function so you excrete less sodium… which raises your blood pressure even more.  

This much I know because I’m stage 3A CKD. I was 3B when I wrote the first two parts of this series. I believe increased hydration brought me up to 3A again, but that has nothing to do with sodium. Or does it? 

And in dialysis? DaVita Kidney Care has this to say about sodium restriction in dialysis: 

“If you have stage 5 CKD and require dialysis, you will be asked to follow a low-sodium diet. The diet will help control blood pressure and fluid intake. Controlling sodium intake will help avoid cramping and blood pressure drops during dialysis. Your dietitian will determine how much sodium you can eat each day and counsel you on regulating it in your diet.” 

Finally, let’s look at sodium restrictions for transplantees. I automatically went to the National Kidney Foundation: 

“Most people still need to limit salt after they get a transplant, although it is different with each person. Transplant medicines, especially steroids, may cause your body to hold on to fluid, and salt makes this problem worse. Increased fluid in the body raises blood pressure. Controlling blood pressure is very important to your transplant. Your doctor will decide how much sodium is best for you. It is a good idea to limit foods high in salt, such as: 

Table salt 

Cured meats, such as ham, bacon, and sausage 

Lunch meats, such as bologna, salami, and hot dogs 

Pre-packaged frozen dinners 

Ramen noodles, boxed noodles, and potato and rice mixes 

Canned soups and pasta sauce 

Pickled foods, such as olives, pickles, and sauerkraut 

Snack foods, such as salted chips, nuts, pretzels, and popcorn” 

I love learning as I write these blogs. The thing that surprised me most was why dialysis patients need to restrict their sodium intake. I think I need to learn more about dialysis. 

Back to The National Kidney Foundation to end this week’s blog with this informative chart: 

Limit the Amount of…	Food to Limit Because of their High Sodium Content	Acceptable Substitutes
Salt & Salt Seasonings	Table salt Seasoning salt Garlic salt Onion salt Celery salt Lemon pepper Lite salt Meat tenderizer	Fresh garlic, fresh onion, garlic powder, onion powder, black pepper, lemon juice, low- sodium/salt-free seasoning blends, vinegar
Salty Foods	High Sodium Sauces such as: Barbecue sauce Steak Sauce Soy sauce Teryaki sauce Oyster sauce Salted Snacks such as: Crackers Potato chips Corn chips Pretzels Tortilla chips Nuts Popcorn Sunflower seeds	Homemade or low-sodium sauces and salad dressings; vinegar; dry mustard; unsalted crackers, popcorn, pretzels, tortilla, or corn chips
Cured Foods	Ham Salt pork Bacon Sauerkraut Pickles, pickle relish Lox & Herring Olives	Fresh beef, veal, pork, poultry, fish, eggs
Luncheon Meats	Hot Dogs Cold cuts, deli meats Pastrami Sausage Corned beef Spam	Low-salt deli meats (if you need to limit phosphorus, these are likely high in phosphorus)
Processed Foods	Buttermilk Cheese Canned: Soups Tomato products Vegetable juices Canned vegetables Convenience Foods such as: TV Dinners Canned raviolis Canned Chili Packaged Macaroni & Cheese Canned Spaghetti Commercial mixes Frozen prepared foods Fast foods	Natural cheese (1-2 oz per week)         Homemade or reduced-sodium soups, canned food without added salt         Homemade casseroles without added salt, made with fresh or raw vegetables, fresh meat, rice, pasta, or no added salt canned vegetables

Until next week, 

Keep living your life! 

Leftovers

The last time Easter, Passover, and Ramadan coincided was 33 years ago. This year, Passover started on the evening of April 15, Easter Sunday – the end of Holy Week – fell on either April 17 (for Western Christendom) or will fall on April 24 (for Eastern Orthodoxy), and the month-long fast of Ramadan began on April 2. That’s a lot of special food for the kidney diet. 

True, most of these holidays are over, but what to do with the leftover special food? Let’s take a look. I’ll start with Passover food since that’s what I’m most familiar with. First thing you should know is that Jews do not eat leavened bread, only matzoh which is unleavened, during the seven or eight days of Passover. That symbolizes that the Jews needed to leave Egypt quickly, so quickly that there wasn’t time for their bread to rise.  

My mother made terrific matzoh ball soup… and she made a lot of it. Enough so there would be plenty left over for us to store in the refrigerator and send some home with guests. You can do the same providing it’s low sodium. After all, it’s just chicken stock, carrots, celery, and matzoh balls, although you may make it a little differently.  Did you know that low sodium matzoh ball mix is readily available? 

Photo by cottonbro on Pexels.com

The main course for Passover in my home was baked chicken and roasted vegetables. This is so easy. If you’ve cooked with no sodium spices instead of salt, all you need to do is warm up the leftovers. No wonder my mother made so much. She didn’t have to cook for the rest of the week!  

When I started hosting the seders as an adult, I did the same thing. Once I was diagnosed with chronic kidney disease, I found myself surprised at how little change I had to make to this meal to ensure it was kidney friendly. All I had to do was keep it low sodium. Sometimes, the warmed-up leftovers even tasted better than when they were originally served. 

Easter celebrates the resurrection of Jesus for Christians. I’ve made one or two Easter meals for my husband, stepdaughters, and sons-in-law. This was a little more difficult because it was a meat meal. They preferred a standing rib roast. I’m not much of a red meat eater so I had to ask the butcher what it looked like and then I needed to look up recipes. Despite how many of us were at these Easter dinners, there were leftovers. You guessed it, having used sodium free spices in the cooking, all I had to do was warm up the leftovers. Well, that’s not exactly true, just as with the Passover meal, I had to be careful about how much of the chicken for that meal or the standing rib roast for this one I had. Everyone’s different, but my nephrologist keeps me capped at five ounces of protein per day. 

We had served only kidney friendly vegetables with this but had no leftovers. So, we made a fresh salad with carrots, a few mushrooms, and just a bit of spinach to go with the standing roast leftovers. Simple, tasty, and kidney friendly. We used few mushrooms and spinach because they are high in potassium, one of the things CKD patients need to be aware of.  

Photo by George Dolgikh @ Giftpundits.com on Pexels.com

Come to think of it, the only problem with the leftovers for both Passover and Easter was the desserts. DaVita has a tasty recipe for Apple Cinnamon Farfel Kugel for Passover. They also have a mouthwatering recipe for Strawberry Pie for Easter. I’m offering you these suggestions because I usually don’t bother with dessert, serving fresh fruit and coffee instead. I do acknowledge that dessert is the crowning glory of meals, especially holiday meals, for some people whether they are CKD patients or not. The Peeps and chocolates my kids brought to the meal offer proof of that statement. 

Now to tackle a Ramadan meal. First, you need to know that Muslims fast from dawn to dusk each of the one-month days of Ramadan. That means the meals are extra special. There are many recipes for the before dawn meal, but scrambled eggs seem to be the quickest and easiest. Yes, you can make enough to have leftovers. You just need to remember to spice it with no sodium spices (Think something like Mrs. Dash spices.) and watch your protein limit. 

Photo by Vivaan Rupani on Pexels.com

Breaking the fast after dusk requires something an empty stomach can handle. One such food is Rice Roti, as Americans call it. You may already be aware of the ingredients: water, oil, rice flour. [This is a good recipe for me since I have a wheat sensitivity.] You may know it as Tandal Achi Bhakri or Pathiri. It’s low potassium and saltless the way CKD patients make it. Be careful of the accompaniments you choose. You are watching your sodium, potassium, phosphorous, and protein intake, right? It’s usually cooked on a tava or cooking pan. You may know it as a sac or saj. You can use a frying pan instead if you’d rather. 

Okay, so what do you do with the leftovers? Since they are already salt and potassium free, you simply warm them up and add the accompaniments. One could be cranberry dip with fresh fruit, providing you don’t have hyperkalemia [high potassium]. Another might be corn idlis. DaVita has some good recipes with electrolyte counts included. Oh, but we’re taking about leftovers, aren’t we? Again, heat or chill your accompaniments as needed. 

The one thing to be careful about is the desserts. Many are made with dried fruits. These are extremely high in potassium since potassium becomes concentrated in such foods.  

Maybe living life on the kidney diet is not as hard as we may have thought. Leftovers certainly are easy if the food is cooked according to the kidney diet in the first place. As for cooking – even special holiday foods – there are numerous websites and cookbooks to help. Hmmm, maybe that should be the topic of next week’s blog. 

Until next week, 

Keep living your life! 

It’s the Month of….

World Kidney Day was March 10^th this year. While I publicized it widely on social media, I didn’t blog about it because I have just about every year for the last 11 years or so. Just scroll to ‘World Kidney Day’ on the topics dropdown to the right of the blog and you can read last year’s blog about it. 

By now, we all know March is National Kidney Month as well as Women’s History Month. Did you know it’s also National Nutrition Month? National Day Calendar tells us there is much more being celebrated this month: 

“Asset Management Awareness Month 

Developmental Disabilities Awareness Month 

Endometriosis Awareness Month 

Irish-American Heritage Month 

Multiple Sclerosis Awareness Month 

National Athletic Training Month 

National Brain Injury Awareness Month 

National Breast Implant Awareness Month 

National Caffeine Awareness Month 

National Celery Month 

National Cerebral Palsy Awareness Month 

National Cheerleading Safety Month 

National Craft Month 

National Colorectal Cancer Awareness Month 

National Credit Education Month 

National Flour Month 

National Frozen Food Month 

National Kidney Month 

National Noodle Month 

National Nutrition Month 

National Peanut Month 

National Sauce Month 

National Trisomy Awareness Month 

National Umbrella Month 

National Women’s History Month 

National Social Work Month” 

I’ll admit I had to look up Trisomy. I figured it was three something since tri means three. The Medical Dictionary backed me up: 

“the presence of an additional (third) chromosome of one type in an otherwise diploid cell (2n +1).”   

Now, I’ll agree with you that some of these seem pretty silly, but I also think it’s no accident that National Kidney Month and National Nutrition Month are both in March. Wait, before I forget, you can also use the topic dropdown to read last year’s blog on National Women’s History Month. 

I haven’t written about the basics of chronic kidney disease treatment in a while, but nutrition is one of them. I’ll let the National Kidney Foundation explain about the first of the ‘3 Ps and 1 S’ as I called them in my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. 

“Protein 

Your body needs protein to help build muscle, repair tissue, and fight infection. If you have kidney disease, you may need to watch how much protein you eat. Having too much protein can cause waste to build up in your blood, and your kidneys may not be able to remove all the extra waste. If protein intake is too low, however, it may cause other problems so it is essential to eat the right amount each day. 

The amount of protein you need is based on: 

your body size 

your kidney problem  

the amount of protein in your urine 

Your dietitian or healthcare provider can tell you how much protein you should eat.” 

My first nephrologist limited me to 5 ounces of protein daily 13 years ago. That still hasn’t changed. 

What about that one S? I thought the National Kidney Fund would be helpful here and they were, as long as you remember sodium, the 1 S, is one of the two elements of table salt: 

“Salt makes you thirsty and can make your body retain fluid. Having more fluid in your body can raise your blood pressure. When you have high blood pressure, your kidneys must work harder to filter blood. Over time, this can lead to kidney damage. 

Too much fluid in your body also puts more strain on your heart, lowers your protein levels, and leads to difficulty breathing. Taking steps to limit excess fluid buildup, and thereby controlling blood pressure, is vital to improving your health. 

If you have high blood pressure, eating a low or no added salt diet can help to lower it. Increasing your daily physical activity and taking blood pressure medicines if prescribed by your doctor are other ways to manage your blood pressure. Taking steps to keep your blood pressure at a healthy level may help keep kidney disease from getting worse.” 

2 Ps to go. One of them is potassium. I went right to my old and trusted site WebMD for information: 

“Every time you eat a banana or a baked potato with the skin on (not just the tasty buttered insides), you’re getting potassium. This essential mineral keeps your muscles healthy and your heartbeat and blood pressure steady. 

If you have a heart or kidney condition, though, your doctor may recommend a low-potassium diet. Your kidneys are responsible for keeping a healthy amount of potassium in your body. If they’re not working right, you may get too much or too little. 

If you have too much potassium in your blood, it can cause cardiac arrest — when your heart suddenly stops beating. 

If you have too little potassium in your blood, it can cause an irregular heartbeat. Your muscles may also feel weak.” 

Hang on, here’s the last P – phosphorous. That’s the one element you usually don’t find on food labels. For CKD patients, that’s pretty annoying since you may have to keep track of all 3 Ps and 1S at your nephrologist’s or renal dietitian’s direction. Mayo Clinic, another trusted site I’ve been consulting for over a dozen years, explains: 

“Phosphorus is a mineral that’s found naturally in many foods and also added to many processed foods. When you eat foods that have phosphorus in them, most of the phosphorus goes into your blood. Healthy kidneys remove extra phosphorus from the blood. 

If your kidneys don’t work well, you can develop a high phosphorus level in your blood, putting you at greater risk of heart disease, weak bones, joint pain and even death …. 

How much phosphorus you need depends on your kidney function. If you have early-stage kidney disease or you’re on dialysis, you may need to limit phosphorus. Nearly every food contains some phosphorus, so this can be hard to do.” 

While National Nutrition Month is for everyone, we – as CKD patients – need to pay more than usual attention to our nutrition if we don’t want our chronic kidney disease to go spiraling out of control. Naturally, our diets need to be individualized based on the stage of our disease and diet is not all there is to slowing down the progression of the decline of your kidney function (the definition of CKD), but it’s a start. 

Until next week, 

Keep living your life!  

What Are the Basics, Anyway?

Happy New Year! You know, the only way for it to be happy is for you to make it happy. For us, that includes taking care of our chronic kidney disease in the most basic ways. “Remind me; what are those?” my good buddy asked when I said that to her. So, this will be a back to basics blog to begin the new year. 

We all know that what we eat has a lot of influence on our kidneys. Way back when I was writing What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I called this influence “the three p’s and an s.” That’s an easy way to remember what I’ll explain next. Remember though, we are each unique patients and you and your nephrologist will decide to what extent you follow these suggestions.  

Okay then. Let’s start. MedlinePlus has a comprehensive explanation of potassium: 

“Potassium is a mineral that your body needs to work properly. It is a type of electrolyte. It helps your nerves to function and muscles to contract. It helps your heartbeat stay regular. It also helps move nutrients into cells and waste products out of cells. A diet rich in potassium helps to offset some of sodium’s harmful effects on blood pressure…. 

Your kidneys help to keep the right amount of potassium in your body. If you have chronic kidney disease, your kidneys may not remove extra potassium from the blood…. You may need a special diet to lower the amount of potassium that you eat.” 

Then there’s protein. We’re pretty familiar with the definition, but what does it has to do with your kidneys? The National Kidney Foundation has that one covered: 

“…. Protein is used to build muscle, heal, fight infection, and stay healthy. Protein needs vary based on your age, sex and overall general health. Protein in the diet comes from both animal and plant sources…. 

You need protein every day to meet your body’s needs, but if you have kidney disease, your body may not be able to remove all the waste from the protein in your diet. Excess protein waste can build up in your blood causing nausea, loss of appetite, weakness, and taste changes…. 

The more protein waste that needs to be removed, the harder the kidneys need to work to get rid of it. This can be stressful for your kidneys, causing them to wear out faster. For people with kidney disease who are not on dialysis, a diet lower in protein is recommended.” 

The final ‘p’ is phosphorous. I turned to WebMD for help with this one: 

“Phosphorus is a mineral, likeiron [sic] or potassium. You have more of this mineral in your body than any other except calcium…. 

It plays an important role in keeping you healthy, so it’s an important part of your diet. One of its main tasks is to serve as a building block for healthy teeth and bones. You may think that’s calcium’s job. But calcium needs phosphorus to make your teeth and bones strong. 

Phosphorus also helps your nerves and muscles do their jobs. It’s a buffer that keeps the pH level in your blood balanced. Phosphorus also helps you turn fat, carbs, and protein into energy…. 

When they work well, your kidneys remove extra phosphorus your body can’t use. 

If you have a kidney condition like chronic kidney disease, you may have high levels of phosphorus. This can cause your bones to lose calcium or calcium deposits to form in your blood vessels, eyes, heart, and lungs. If you have too much phosphorus in your body for a long period of time, your chance of a heart attack or stroke goes up.” 

Wow, and we’re not done yet. There’s sodium, too.  The to the MayoClinic for the following: 

“The body needs some sodium to function properly. Sodium plays a role in: 

The balance of fluids in your body 

The way nerves and muscles work 

The kidneys balance the amount of sodium in the body. When sodium is low, the kidneys hold on to it. When sodium is high, the kidneys release some in urine. 

If the kidneys can’t eliminate enough sodium, it builds up in the blood. Sodium attracts and holds water, so the blood volume increases. The heart must work harder to pump blood, and that increases pressure in the arteries. Over time this can increase the risk of heart disease, stroke and kidney disease. 

Some people are more sensitive to the effects of sodium than are others. That means they retain sodium more easily, which leads to fluid retention and increased blood pressure.” 

Now you can understand the plethora of kidney diet cookbooks. Or you can limit these electrolytes yourself. That’s what I did until I developed diabetes. I’ve had CKD for 14 years, so some of the estimating had become rote. Honestly, now I’m back to needing help to combine the renal and diabetes diet. 

Dealing with “the three p’s and one s” is the beginning of taking care of your CKD. There’s also exercise, sleep, avoiding stress, rest, watching your weight, avoiding alcohol and smoking, and keeping tight control of your diabetes, heart disease, and high blood pressure. Oh, limiting your sodium will help you with your high blood pressure, too.  

There isn’t enough space in this particular blog to write about each of those. Let me know if you’d like a blog explaining more about the items in the previous paragraph. Meanwhile, see what you [or you and doctor] can do to help with them. 

Welcome to 2022, the year you take a bigger part in making yourself happy by taking care of your CKD. 

Until next week, 

Keep living your life! 

Water, Water, Everywhere

 As Chronic Kidney Disease patients, we are warned that we need to keep hydrating. That seems to be the current term for adequate water intake. I just call it drinking water. Surprise! Drinking too much water can also be harmful to your kidneys. 

I know; this is a shock. Let’s go back to the beginning to see why you need water for your health in the first place. Of course, the National Kidney Foundation came to mind immediately, and with good reason. They are a trusted source. This is their explanation. 

Photo by Pixabay on Pexels.com

“Keep your kidneys healthy by being ‘water wise.’ This means drinking the right amount of water for you. A common misconception is that everyone should drink eight glasses of water per day, but since everyone is different, daily water needs will vary by person. How much water you need is based on differences in age, climate, exercise intensity, as well as states of pregnancy, breastfeeding, and illness. 

About 60-70% of your body weight is made up of water, and every part of your body needs it to function properly. Water helps the kidneys remove wastes from your blood in the form of urine. Water also helps keep your blood vessels open so that blood can travel freely to your kidneys, and deliver essential nutrients to them. But if you become dehydrated, then it is more difficult for this delivery system to work. Mild dehydration can make you feel tired, and can impair normal bodily functions. Severe dehydration can lead to kidney damage, so it is important to drink enough when you work or exercise very hard, and especially in warm and humid weather.” 

That sounds reasonable, so what is this about too much water? Last February, PubMed published a study about this. By the way, PubMed is part of the National Center for Biotechnology [NCBI] which, in turn, is part of the National Library of Medicine [NLM]. That, in turn, is part of the National Institutes of Health [NIH]. This is what that study concluded. 

“In patients with CKD, the relation between plain water intake and progression to kidney failure appears to be U-shaped. Both low and high intake may not be beneficial in CKD.” 

Wait a minute here. Maybe we’d better find out more specifically how it is that water benefits the kidneys. Medical News Today had the answers I was looking for. 

“Water helps dissolve minerals and nutrients, making them more accessible to the body. It also helps remove waste products. 

The kidneys play a key role in balancing fluid levels. 

These two functions make water vital to the kidneys. 

Every day, the kidneys filter around 120-150 quarts of fluid. 

Of these, approximately 1-2 quarts are removed from the body in the form of urine, and the rest is recovered by the bloodstream. 

Water is essential for the kidneys to function. 

If the kidneys do not function properly, waste products and excess fluid can build up inside the body. 

Untreated, chronic kidney disease can lead to kidney failure. The organs stop working, and either dialysis or kidney transplantation is required.” 

It’s clear that water intake is essential for keeping our kidneys as healthy as possible, even though we have CKD. So, how can you cause damage by drinking too much water? The Mayo Clinic tells us: 

“Drinking too much water is rarely a problem for healthy, well-nourished adults. Athletes occasionally may drink too much water in an attempt to prevent dehydration during long or intense exercise. When you drink too much water, your kidneys can’t get rid of the excess water. The sodium content of your blood becomes diluted. This is called hyponatremia and it can be life-threatening.” 

I wanted a bit more about hyponatremia. I knew that hypo means ‘low’ from that Greek and Latin Roots one credit course I took to fill out my course requirements in undergraduate school. It turned out to be one of the more enjoyable courses I took. Anyway, back to hyponatremia.’Natr’ means sodium in medical terms and ’emia’ is the Greek suffix for blood. Add them together and you get low sodium in the blood. Notice, it’s not that you’re adding sodium, but rather that you’re diluting the existing sodium. 

So far, we’ve figured out we can’t drink too little or too much water if we want to keep whatever kidney function we have left. Does that mean we need to drink exactly eight glasses of water a day just as common knowledge tells us to? That’s not what we readdiscovered earlier in the blog. Welll, how does water balance in our bodies work then?

Funny you should ask. I was just reading an article by Tamara Hew-Butler, associate professor of exercise and sports science at Wayne State University, about this. She says,

“Because total body water balance, or what we exercise scientists call homeostasis, is complicated, mammals survive by making real-time adjustments at the kidney. That’s why when it comes to hydration, our kidneys are king. 

Within each kidney — we need only one (we are born with a spare, just in case) — is an undercover network of aquaporin-2 (AQP-2) water channels which respond to a hormone called arginine vasopressin. This is the body’s main anti-diuretic (water retention) hormone. It is secreted by the posterior pituitary gland in response to nerve signals sent from specialized brain sensors which detect subtle changes in water balance. These specialized sensors are called circumventricular organs. 

The kidneys will make molecular adjustments to both underhydration and overhydration within 40 seconds in response to any upset in the water balance. These adjustments result from the mobilization armies of AQP-2 water channels, numbering about 12 million per collecting duct cell. 

This is why when we drink more water than our body needs — above thirst — we immediately have to discharge any excess water. Or when we forget our water bottle during practice, we stop urinating to conserve body water. This quick coordinated action between the brain, cranial nerves and kidneys is far more efficient and precise than any phone app, gadget or personalized recommendation available.” 

I have to admit the scientific information about overhydrating is new to me. I find it fascinating and could go on and on about it, but it will take several blogs to do so. 

Until next week, 

Keep living your life! 

Uh, What’s That?

 Finally, a bunch of help for slowing down chronic kidney disease! The latest one that caught my eye was Kerendia. It was the spelling that grabbed me. [Remember: I am a former English teacher.] This is the announcement from diaTribe: 

“On July 9, the FDA approved the drug KERENDIA (finerenone) which has been shown to slow the progression of chronic kidney disease (CKD) that is associated with type 2 diabetes. This new medication is indicated to reduce the risk of eGFR decline, kidney failure, cardiovascular death, non-fatal heart attacks, and hospitalization for heart failure – which are all associated with CKD as a result of having type 2 diabetes.” 

DiaTribe is new to me and you, so here’s what they have to say about themselves: 

“At The diaTribe Foundation, we believe that the millions of people living with diabetes, prediabetes, and obesity today deserve education and support to help them manage their health. 

Through our publication, diaTribe, we provide readers with cutting-edge diabetes insights and actionable tips that empower them to manage their diabetes. In doing so, we hope to help people become happier and healthier.” 

To say the least, this is ‘cutting-edge’ news. But why the two different names? The drug company that developed the drug – Bayer – uses Kerendia as its brand name, a common practice for drugs. For example, you’re probably familiar with aspirin [which is a NSAID, so don’t take it if you have CKD.]. That’s a brand name. The actual name for aspirin is acetylsalicylic acid. Just so, Kerendia is the brand name for finerenone. 

I have to admit I simply had no clue as to what finerenone is. So, I did what I always do. I looked it up.  It turns out that finerenon is a non-steroidal mineralocorticoid receptor antagonist. Wonderful. That didn’t help me in the least. 

Let’s go bit by bit. We do know that non-steroidal isn’t good for CKD patients. Time to hit the dictionaries. The Freedictionary’s Medical Dictionary tells us it means: 

“Not containing steroids or cortisone. Usually refers to a class of drugs called Non Steroidal Anti-Inflammatory Drugs” 

Do you remember why we can’t take NSAIDS? I enjoyed the easily understood answer to this question from Ochsner Health. They are one of the top hospitals in the USA. 

“NSAIDs can affect kidneys by several different mechanisms. They can cause high blood pressure and can also interact with some blood pressure drugs in a way that prevents them from working correctly such as diuretics, ACE inhibitors, and ARBs which are a group of drugs that are designed to relax blood vessels. NSAIDs may increase your fluid retention and can lead to decreased blood flow to kidneys. This is because NSAIDs block prostaglandins, which are the natural chemicals that dilate blood vessels and allow oxygen to reach the kidneys to keep them alive and healthy.” 

Got it. On to mineralocorticoid. The same dictionary as previously used tells us that it means: 

“Hormones from the outer layer (cortex) of the adrenal gland that promote retention of sodium and excretion of potassium in the urine.” 

And here we are trying our darnedest to avoid sodium and potassium. I think we can figure out both receptor and antagonist by ourselves. Add all this together and we find that non- steroidal mineralocorticoid receptor antagonist is not a NSAID but does prevent the introduction of certain hormones that make our sodium and potassium levels worse. I think. That wasn’t so hard, was it? [She asked tongue in cheek.] 

Now that we know what it is… sort of, let’s find out if there are side effects. Most drugs have them. I turned to my trusty old pal, RxList: 

Photo by Lisa A on Pexels.com

“Side effects of Kerendia include: 

high blood potassium (hyperkalemia),  

low blood pressure (hypotension), and  

low blood sodium (hyponatremia).” 

This is important to know because, as WebMD explains: 

“The body needs a delicate balance of potassium to help the heart and other muscles work properly. But too much potassium in your blood can lead to dangerous, and possibly deadly, changes in heart rhythm.”  

As for hypotension, The MayoClinic has that one covered: 

“Even moderate forms of low blood pressure can cause dizziness, weakness, fainting and a risk of injury from falls. And severely low blood pressure can deprive your body of enough oxygen to carry out its functions, leading to damage to your heart and brain.” 

And, finally, hyponatremia. Healthline, that wonderful company that awarded this blog not one, but two, awards tells us: 

“Sodium is an essential electrolyte that helps maintain the balance of water in and around your cells. It’s important for proper muscle and nerve function. It also helps maintain stable blood pressure levels.” 

I also noticed on a few sites that grapefruit or grapefruit juice can make the occurrence of side effects more frequent. There are other, less common side effects of kerendia. 

Keep in mind that this drug is only for those who have Chronic Kidney Disease and type 2 Diabetes. I think that calls for a little refresher. Type 1 Diabetes is when you don’t produce insulin. Type 2 is when you produce insulin, but your body is resistant to using the insulin you produce. Insulin is: 

“a protein pancreatic hormone secreted by the beta cells of the islets of Langerhans that is essential especially for the metabolism of carbohydrates and the regulation of glucose levels in the blood and that when insufficiently produced results in diabetes mellitus” 

Great! I got to use my favorite dictionary, The Merriam-Webster, for that definition.  

Personally, I am no longer pre-diabetic since two thirds of my pancreas have been removed due to cancer. Unfortunately, it’s because I am now a Type 2 Diabetic. You can’t have all the pancreatic hormone you need if you only have one third of your pancreas. 

Some blogs come easy; some don’t. This one didn’t. I hope it helps you understand this new drug so you don’t have to research it yourself. 

Until next week, 

Keep living your life! 

A Question I Never Did Answer

 This has been a week fraught with the good (my friend’s high school graduation) and the bad (settling someone’s estate). I didn’t realize until yesterday that today would be Monday. What was I going to write about? I hadn’t really thought about it. Oh wait. Somewhere along the line recently, someone or some company asked me about Losartan. Good question. I could write about that.  I guess I’d better get digging. 

First thing I did was check Drugs.com to see what it is. 

“Losartan (Cozaar) belongs to a group of drugs called angiotensin II receptor antagonists. [Gail here: also called an ARB.] It keeps blood vessels from narrowing, which lowers blood pressure and improves blood flow. 

Losartan is used to treat high blood pressure (hypertension). It is also used to lower the risk of stroke in certain people with heart disease. 

Losartan is used to slow long-term kidney damage in people with type 2 diabetes who also have high blood pressure. 

Losartan may also be used for purposes not listed in this medication guide.” 

Now I know why it was mentioned to me. I have both high blood pressure and type 2 diabetes. But I’m not so sure I understand how it works. 

Let’s start figuring it out by defining angiotensin II receptor antagonists. First, we need to know that angiotensin ll receptor antagonists and angiotensin ll receptor blockers are one and the same. Now, Mayo Clinic to the rescue: 

“Angiotensin II receptor blockers help relax your veins and arteries to lower your blood pressure and make it easier for your heart to pump blood. 

Angiotensin is a chemical in your body that narrows your blood vessels. This narrowing can increase your blood pressure and force your heart to work harder. 

Angiotensin II receptor blockers block the action of angiotensin II. As a result, the medication allows your veins and arteries to widen (dilate).” 

Wait a minute here. If angiotensin is the chemical, why is there an ‘II’ after that word in the name of the receptor blocker? [I really do wonder about things like this.] Are you ready for this? According to  Encyclopaedia Britannica, there are not one, not two, but three kinds of angiotensin: 

“There are three forms of angiotensin. Angiotensin I is produced by the action of renin (an enzyme produced by the kidneys) on a protein called angiotensinogen, which is formed by the liver. Angiotensin I is transformed into angiotensin II in the blood by the action of angiotensin-converting enzyme (ACE). Angiotensin II acts directly on blood vessels, causing their constriction and thereby raising blood pressure. This substance also can cause vessel constriction through indirect mechanisms, such as by stimulating the release of the steroid hormone aldosterone and substances called catecholamines from the adrenal glands and by blocking the reuptake of the hormone norepinephrine into neurons. Angiotensin III is a metabolite of angiotensin II and shares similar, though less potent, actions.” 

Look at that kidney involvement, will you. But we are going down the rabbit hole, aren’t we? Okay, let’s get to it. The logical next step is to define aldosterone.  You and Your Hormones does just that: 

“Aldosterone is a steroid hormone. Its main role is to regulate salt and water in the body, thus having an effect on blood pressure.” 

Salt and water, also important to kidney function. 

So, what are catecholamines and why are they important to those of us with kidney disease? 

“Catecholamines increase heart rate, blood pressure, breathing rate, muscle strength, and mental alertness. They also lower the amount of blood going to the skin and intestines and increase blood going to the major organs, such as the brain, heart, and kidneys.” 

Thank you to the University of Michigan’s Michigan Medicine for an explanation that is easily understood. Did you notice the kidney involvement here, too? 

Just one more definition, but you need to know that norepinephrine and noradrenaline are the same thing. [Confusing!] I turned to Lumen Boundless Biology for help: 

“Norepinephrine, produced by the adrenal medulla, is a stress hormone that increases blood pressure, heart rate, and glucose from energy stores; in the kidneys, it will cause constriction of the smooth muscles, resulting in decreased or inhibited flow to the nephrons.” 

Uh-huh, the kidneys again. 

Alright, so it all sounds good to go with Losartan in that it will be helpful for your kidneys. Aha! That is not exactly the case. It turns out that doctors do not start kidney disease patients at the highest doses of losartan since that may cause hyperkalemia, better known as high potassium. Here’s a conundrum: Losartan can also cause kidney disease. This is what MedicalNewsToday tells us are the possible serious side effects of taking losartan. 

“High potassium blood levels. Symptoms can include: 

heart rhythm problems 

muscle weakness 

slow heart rate 

Allergic reactions. Symptoms can include: 

swelling of your face, lips, throat, or tongue 

Low blood pressure. Symptoms can include: 

feeling faint or dizzy 

Kidney disease. Symptoms can include: 

swelling in your feet, ankles, or hands 

Unexplained weight gain” 

Does this mean don’t take losartan even if it’s prescribed by your family doctor or nephrologist? No, not at all. It simply means you have to be carefully monitored. Remember, I’m not a doctor nor have I ever claimed to be one, so I urge you to check with yours. 

I kept running across RAAS in my searching. It turns out that mean Renin-Angiotensin- Aldosterone System. What’s that? Beats me. But the Merck Manual, Consumer Version knows: 

“Regulating Blood Pressure: The Renin-Angiotensin-Aldosterone System 

The renin-angiotensin-aldosterone system is a series of reactions designed to help regulate blood pressure. 

When blood pressure falls (for systolic, to 100 mm Hg or lower), the kidneys release the enzyme renin into the bloodstream. 

Renin splits angiotensinogen, a large protein that circulates in the bloodstream, into pieces. One piece is angiotensin I. 

Angiotensin I, which is relatively inactive, is split into pieces by angiotensin-converting enzyme (ACE). One piece is angiotensin II, a hormone, which is very active. 

Angiotensin II causes the muscular walls of small arteries (arterioles) to constrict, increasing blood pressure. Angiotensin II also triggers the release of the hormone aldosterone from the adrenal glands and vasopressin (antidiuretic hormone) from the pituitary gland. 

Aldosterone and vasopressin cause the kidneys to retain sodium (salt). Aldosterone also causes the kidneys to excrete potassium. The increased sodium causes water to be retained, thus increasing blood volume and blood pressure.” 

And it all comes full circle. Oh, one last thing: too much activation of the RAAS causes kidney disease. Oh, my. 

Until next week, 

Keep living your life! 

I Can’t Eat That

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

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

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

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

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

3: medical practice concerned with allergies

4: a feeling of antipathy or aversion”

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

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

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

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

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

“the quality or state of being sensitive: such as

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

b: the quality or state of being hypersensitive

c: the degree to which a radio receiving set responds to incoming waves

d: the capacity of being easily hurt

e: awareness of the needs and emotions of others”

Definition a is the one we need.

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Good Oils or Bad Oils?

 Here’s hoping those of you in the U.S.A. had a safe and thoughtful July 4^th. 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!

 

Bipolar Disorder and Chronic Kidney Disease

It turns out I know more people with bipolar disorder than I’d thought. Of course, that led me to wonder again what, if anything, this might have to do with CKD. That’s just the way my mind works. Everything – and I do mean everything – leads back to CKD for me. So, as usual, I started asking them questions and poking around on the internet.

It seems that most of them are taking lithium to help control the bipolar disorder. Okay, I’ll bite: what is lithium? Drugs.com at https://www.drugs.com/lithium.html has quite a lot to say about this drug, but I’ll start with the basic definition:

“Lithium affects the flow of sodium through nerve and muscle cells in the body. Sodium affects excitation or mania.

Lithium a mood stabilizer that is a used to treat or control the manic episodes of bipolar disorder (manic depression). Manic symptoms include hyperactivity, rushed speech, poor judgment, reduced need for sleep, aggression, and anger.

Lithium also helps to prevent or lessen the intensity of manic episodes.”

Notice sodium is mentioned. Keep that in mind while we backtrack for a definition of bipolar disorder. It seems I jumped right in without giving you some of the necessary background information. I’ll rectify that right now.

The National Institute of Mental Health at https://www.nimh.nih.gov/health/topics/bipolar-disorder/index.shtml tells us:

“Bipolar disorder (formerly called manic-depressive illness or manic depression) is a mental disorder that causes unusual shifts in mood, energy, activity levels, concentration, and the ability to carry out day-to-day tasks.

There are three types of bipolar disorder. All three types involve clear changes in mood, energy, and activity levels. These moods range from periods of extremely ‘up,’ elated, irritable, or energized behavior (known as manic episodes) to very ‘down,’ sad, indifferent, or hopeless periods (known as depressive episodes). Less severe manic periods are known as hypomanic episodes.

• Bipolar I Disorder— defined by manic episodes that last at least 7 days, or by manic symptoms that are so severe that the person needs immediate hospital care. Usually, depressive episodes occur as well, typically lasting at least 2 weeks. Episodes of depression with mixed features (having depressive symptoms and manic symptoms at the same time) are also possible.
• Bipolar II Disorder— defined by a pattern of depressive episodes and hypomanic episodes, but not the full-blown manic episodes that are typical of Bipolar I Disorder.
• Cyclothymic Disorder (also called Cyclothymia)— defined by periods of hypomanic symptoms as well as periods of depressive symptoms lasting for at least 2 years (1 year in children and adolescents). However, the symptoms do not meet the diagnostic requirements for a hypomanic episode and a depressive episode.

Sometimes a person might experience symptoms of bipolar disorder that do not match the three categories listed above, which is referred to as ‘other specified and unspecified bipolar and related disorders’ .”

In the July 3^rd, 2017, blog, I wrote about those who already have CKD and then develop bipolar disorder.

“Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend…

“How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

As we can see, this is not the first time I’ve written about a dual diagnose of these two diseases – one mental, one physical – and how they affect each other. One of the interesting facts I found is that you need to tell your doctor if you have kidney disease when he prescribes lithium. None of my friends has CKD yet, although one is under surveillance (if that’s the proper word) since she’s having some decline in her eGFR.

Remember I asked you to keep that sodium reference in mind? One problem with lithium is that it requires you to include sodium in your diet. As a CKD patient, you’re asked to limit your sodium intake. You can’t do both at once. This is from WebMD at https://www.webmd.com/bipolar-disorder/guide/bipolar-disorder-lithium#2:

“Tell your doctor about history of cancer, heart disease, kidney disease, epilepsy, and allergies. Make sure your doctor knows about all other drugs you are taking. Avoid products that are low in sodium (salt) since a low sodium diet can lead to excessively high lithium levels.

So what can you do to protect your kidneys if you must take lithium for your mental health? This is what Psychiatric Times at https://www.psychiatrictimes.com/view/6-ways-protect-kidneys-while-prescribing-lithium has to say about the subject:

“Tip 1. Avoid toxicity

The link between lithium and renal dysfunction may be explained by exposure to toxic lithium levels. Toxic levels kill renal cells, and that damage builds up every time the level rises above the toxic line….

Tip 2. Keep the level low

Keeping the lithium level as low as possible can prevent renal impairment. The ideal level needs to be personalized and tends to fall with age….

Tip 3. Dose lithium once a day

Dosing lithium once in the evening reduces the risk of renal problems….

If high serum levels are needed to treat active mania, dosing twice a day may be necessary to avoid toxic peaks. The line of toxicity is different for each patient because it’s defined by symptoms.…

Tip 4. Drinking and urinating too much

Polyuria and polydipsia are common adverse effects of lithium (30% to 80%), and they are not always benign. When severe, they may indicate nephrogenic diabetes insipidus (NDI), which means that changes in the renal tubules are impeding the kidneys ability to concentrate the urine. Those changes raise the risk of future renal impairments.

Besides stopping lithium, the main treatment for NDI is amiloride, a potassium sparing diuretic (5 mg po qd). Amiloride may prevent further renal problems by reducing fibrotic changes in the kidneys…. This medication is best managed through consultation with the medical team because it carries a risk of hyperkalemia, particularly in patients with renal insufficiency or diabetes.

Tip 5. Consider N-Acetylcysteine

N-Acetylcysteine (NAC) is an antioxidant that can protect and even reverse renal toxicity, including toxicity from lithium…. NAC is part of a healthy diet, and the capsule form is safe, well-tolerated (the main risk is constipation), and inexpensive. Sounds like a winner, but there is one catch. The renal studies…were all done in animals.

However, there is another reason to use NAC in bipolar disorder. This supplement is effective for bipolar depression in some, but not all, studies… and those benefits are more pronounced in the medically ill….

The dose in bipolar disorder (2000 mg/day) is about twice the amount that was used for renal protection (10 mg/kg)….

Tip 6. Measure

Renal function should be monitored every 3 to 6 months on lithium. Older patients benefit from more frequent monitoring, as do those with a history of toxicity, high serum levels, or drug interactions. Creatinine is usually sufficient, but a more accurate measure of renal function is the estimated glomerular filtration rate (eGFR)….

Laboratory changes that should prompt a nephrology consult include:

• eGFR < 30 ml/min/1.73m²
• Creatinine ≥ 1.5 mg/dL
• A decline of eGFR by more than 4 ml/min/1.73m… per year….”

There’s more, much more, on this site if you’re interested.

Until next week,

Keep living your life!

 

Kidney Healthy Food Labels?

How many of you remember the KidneyX competition? Let me refresh your memories, just in case. This is from this year’s January 13th, blog:

“Redesign Dialysis Phase II

Building off the success of KidneyX’s inaugural prize competition, Redesign Dialysis Phase I, Phase II challenges participants to build and test prototype solutions, or components of solutions, that can replicate normal kidney functions or improve dialysis access. Up to 3 winners will each be awarded $500,000.

Submissions are due by 5:00 ET on January 31, 2020.

Who Can Participate?

You can submit a solution even if you did not submit anything in Phase I….

What is KidneyX Looking for in Redesign Dialysis, Phase II?

We are seeking prototype solutions that address any of these categories:

• Blood Filtration (filtering blood to remove waste and excess fluid)
• Electrolyte Homeostasis (maintaining appropriate levels of key minerals in the blood)
• Volume Regulation (regulating the amount of and/or removing excess fluid).
• Toxin Removal and Secretion (removing, limiting or preventing toxins in the bloodstream).
• Filtrate Drainage and Connectivity (removing excess filtrate after processing; connectivity issues for filtration, processing, and exterior drainage)
• Dialysis Access (vascular, peritoneal, blood circuit, or alternative (e.g., GI tract) access)

… design targets, as well as the categories themselves, were developed based on the Kidney Health Initiative’s Technology Roadmap for Innovative Approaches to Renal Replacement Therapy, which is an excellent resource to learn more about technical and scientific needs in this space.

Tests of the prototype’s function or performance should demonstrate rigor, reproducibility, and statistical analysis….

You can learn more at https://www.kidneyx.org/prizecompetitions/RedesignDialysisPhase.”

I was lucky enough to have one of the phase I winners contact me re a two question survey about his entry. That led to a few emails back and forth which resulted in Anthony’s guest blog today….

“My name is Anthony, and I was recently chosen as a winner in the KidneyX, ‘Patient Innovator Challenge’ competition. KidneyX is a recently formed partnership between the US Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN).  According to their website, they were established ‘to accelerate innovation in the prevention, diagnosis, and treatment of kidney disease.’  The competition welcomed the public to submit ideas on how to improve therapeutic options and the quality of life for those living with kidney disease.

As a former employee of a dialysis company, I always thought that there was something more that could be done in terms of the prevention and treatment of people living with kidney disease. The lack of awareness and research around kidney disease was always a concern to me. Quite frankly I never stopped thinking about it, even after my departure from the industry.  Then one day, I came up with an idea that I believe will solve a lot of problems within the CKD community. My solution is ‘Kidney Healthy’ food labels.

Food labels are a major factor in dictating consumer food purchases today. With major food labels such as ‘gluten free’ and ‘organic’ leading the way, many consumers are now allowing food labels to dictate their purchasing decisions. Consumers are now demanding more transparency in the foods they eat, and food labels serve as a driving force for consumers to take control of their health.

The statistics on kidney disease are not very promising. According to the National Kidney Foundation, Chronic Kidney Disease, or CKD affects an estimated 37 million people in the United States, which equates to 15% of the population. 468,000 of those individuals are currently on dialysis (End Stage Renal Disease), a treatment that cost this country $89,000 per patient each year, which equates to a cost of almost $42 billion dollars a year. According to The Kidney Project, ESRD is increasing in the United States by 5% each year, so it’s only inevitable that this cost is going to continue to increase as the years go by. In addition, two million people suffer from ESRD worldwide; this number is increasing by 5-7% each year.

I believe ‘Kidney Healthy’ food labels could serve as a universal solution to slow down the progression, lower the cost, create better patient outcomes, and ultimately bring more awareness to those living with (and without) Chronic Kidney Disease.

I decided to submit my idea to the KidneyX ‘Patient Innovator Challenge’ competition, and was so honored to be chosen as a winner.  Although I do understand that when it comes to kidney disease, there really isn’t a ‘one diet fits all,’ I still would love to live in a world where kidney patients can rely on a universal food label (such as organic or gluten-free). Obviously a food certification process would have to be created to establish this label, or labels for that matter (CKD Stage 1, 2, 3, etc. label), but my goal is to have a more standardized approach to the kidney diet for patients by way of ‘Kidney Healthy’ food labels.

My next step is to get my idea in front of the CKD community. I am currently conducting an independent research project that I need your help with. I believe that creating Kidney Healthy Food labels (similar to organic and gluten-free) will assist in slowing down the progression of Chronic Kidney Disease, and preserve a better quality of life for both CKD and ESRD patients.

As a member of the CKD Community, Please take this 2 Question Survey to help. Your participation is greatly appreciated!

When you are finished, please forward this survey to the CKD community to assist in helping.

Here is the link to the survey:

https://www.surveymonkey.com/r/KidneyHealthyFoodLabels

 

In other news, those who were interested in Flavis’s low protein, low sodium, low phosphorous products may find their Ditali appealing. We enjoyed the delicate taste of this pasta. By the way, their chocolate chip cookies were pretty good, too.

Keep yourselves as safe as you can during the lock down. Lock down is better than die any day and we are especially open to the virus with our compromised immune systems. Keep that in mind when you start to get restless.

Until next week,

Keep living your life!

Lovely, Lovely Medicinal Food

A few weeks ago, I received some interesting emails from a company called Flavis. I hadn’t heard of them before, so I followed my curiosity and emailed back. It turns out they’re a company that produces low protein, potassium, phosphorous, and sodium carbohydrates. Hmmm, as Chronic Kidney Disease patients we need to keep a lid on our intake of these electrolytes. Could this company and others like them help?

They were kind enough to send samples of their wares. Some of it tasted like medicinal food, but oh those cookies. It would be dangerous for me to keep them in the house. My husband, who doesn’t have CKD, loved them, too. I enjoyed their pasta products, too. Now, lest you get the wrong idea, I am not endorsing this company because I don’t know what others like it are available. However, I wanted to know about their products… which may very well be similar to the products of other such companies and, therefore, helpful to CKD patients.

According to my thinking, logically the first thing to do was look at their website. You can find it at http://www.Flavis.com just as I did. I’m going to copy and paste the parts of their Chronic Kidney Disease material that will help us understand more about this product.

“FLAVIS kidney-friendly foods are starch-based and have reduced protein, phosphorus, sodium, and potassium content. They reduce the kidneys’ workload, and they have the same look, taste, and calorie Content as the foods they replace. These products include pasta, rice, bread, bread products (breadsticks, crostini, rolls, sliced bread, crackers), sweets, and flour. They are suitable for patients in all stages of CKD, especially in the conservative management at stage 3-4.”

I have to admit, the bread was not bad at all and, if Bear had liked the taste more, I would have been perfectly happy using only their pasta products. I liked their taste. Unfortunately, I automatically cooked the rice in the electric rice cooker, apparently a no-no, so I can’t say anything about the taste of the rice.

My goodness! I am endorsing Flavis. Why? Look what I found on the National Kidney Foundation website:

“FLAVIS and the NKF Team-Up to Promote Kidney Health Through Diet

FLAVIS, the kidney friendly food brand, and the National Kidney Foundation partner to promote medical nutrition therapy to help maintain residual kidney function among chronic kidney disease patients

New York, NY – April 8, 2019 – Dr. Schar USA’s (Lyndhurst, NJ) kidney friendly food brand, FLAVIS is teaming up with the National Kidney Foundation to promote the benefits of special dietary foods for people with chronic kidney disease (CKD). FLAVIS, offering a wide portfolio of kidney friendly breads, pasta, snacks, and baking products provides nutrition solutions for patients following a diet low in protein, phosphorus, sodium and potassium, and support to kidney healthcare professionals. The National Kidney Foundation is the largest, most comprehensive and longstanding patient-centric organization dedicated to the awareness, prevention and treatment of kidney disease.

CKD affects 15% of the U.S. adult population. This disease progresses to higher stages as kidney function declines. Some studies show that medical nutrition therapy (MNT) using a low protein diet, under the direction of a nephrologist and registered dietitian nutritionist (RDN), may slow this decline. Through this partnership, FLAVIS and the National Kidney Foundation will provide educational outreach to healthcare professionals that promotes the importance of MNT and proper nutrition for CKD patients to improve dietary adherence and quality of life.

Medical nutrition therapy for CKD, as implemented by a registered dietitian nutritionist, emphasizes an individualized diet plan based upon each patient’s clinical status, goals, and preferences.  MNT for CKD patients includes one or more of the following: decreased sodium, phosphorus, and protein intake, along with sufficient energy, high fiber, and decreased saturated fat intake.  Potassium may also be restricted if the patient has high serum potassium levels. The benefits of MNT include decreasing the risk of complications from high blood pressure and diabetes, reduced uremic toxin levels, and preserved kidney function over time. Studies of MNT in Americans with CKD have shown only about 10% of those eligible receive this nutrition counseling support. FLAVIS’ products are a good source of energy and fiber, and are low in protein, sodium, phosphorus and potassium. These products may help people with CKD preserve kidney function and improve disease outcomes. In partnering with the National Kidney Foundation, FLAVIS aims to provide education and awareness about the benefits of MNT to promote improved quality of life in the CKD population.  For more information about this partnership visit kidney.org/FLAVIS.

Kidney Disease Facts

In the United States, 30 million adults are estimated to have chronic kidney disease—and most aren’t aware of it.  1 in 3 American adults are at risk for chronic kidney disease.  Risk factors for kidney disease include diabetes, high blood pressure, heart disease, obesity, and family history. People of African American, Hispanic, Native American, Asian, or Pacific Islander descent are at increased risk for developing the disease.  African Americans are 3 times more likely than Whites, and Hispanics are nearly 1.5 times more likely than non-Hispanics to develop end stage renal disease (kidney failure).”

 

I am happy to have found this. I remember – even though it was a decade ago – how hard it was to adapt my regular diet to the kidney diet and how often I had to respond, “No, thank you,” after asking the ingredients of a certain meal. Thank you Dr. Shar for helping my fellow CKD sufferers and me enjoy guilt free meals when we feel like having pasta.

By the way, I’m not ignoring COVID-19, I assure you. I’m sifting through all the information I can find before I write about it. As you know, that information changes daily. I’ve ordered my masks and searched out my gloves from the garage. I stay at home except when I have to go out for chemotherapy… and those trips concern me.

Until next week,

Keep living your life!

 

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!

More Time to Learn

I don’t think I’ve ever felt this tired in my life. Cancer does that… and it leaves me a lot of time in bed to explore whatever I’d like to on the internet. So now I’m discovering all these – what’s the word? – possibly peripheral? diseases that affect the kidneys. For example, while I don’t have the energy to post a new Chronic Kidney Disease picture on Instagram every day, I do check the site daily and like what appeals to me and learn from what’s new to me.

That’s where I noticed posts about Bartter syndrome. If you’re like me, you want to know about something you’ve never heard of before. Let’s explore this together.

I went directly to my old friend, MedlinePlus, which is part of the U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000308.htm for a definition and the causes:

“Bartter syndrome is a group of rare conditions that affect the kidneys.

Causes

There are five gene defects known to be associated with Bartter syndrome. The condition is present at birth (congenital). The condition is caused by a defect in the kidneys’ ability to reabsorb sodium. People affected by Bartter syndrome lose too much sodium through the urine. This causes a rise in the level of the hormone aldosterone, and makes the kidneys remove too much potassium from the body. This is known as potassium wasting. The condition also results in an abnormal acid balance in the blood called hypokalemic alkalosis, which causes too much calcium in the urine.”

It looks like there are a few terms here we may now be familiar with. Let’s take a look at aldosterone. The Hormone Health Network from the Endocrine Society at https://www.hormone.org/hormones-and-health/hormones/aldosterone tells us:

“Aldosterone is produced in the cortex of the adrenal glands, which are located above the kidneys…. Aldosterone affects the body’s ability to regulate blood pressure. It sends the signal to organs, like the kidney and colon, that can increase the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine. The hormone also causes the bloodstream to re-absorb water with the sodium to increase blood volume. All of these actions are integral to increasing and lowering blood vessels. Indirectly, the hormone also helps maintain the blood’s pH and electrolyte levels.”

And hypokalemic alkalosis? What is that? Healthline at https://www.healthline.com/health/alkalosis#types  gave me the answer: “Hypokalemic alkalosis Hypokalemic alkalosis occurs when your body lacks the normal amount of the mineral potassium. You normally get potassium from your food, but not eating enough of it is rarely the cause of a potassium deficiency. Kidney disease, excessive sweating, and diarrhea are just a few ways you can lose too much potassium. Potassium is essential to the proper functioning of the:

• heart
• kidneys
• muscles
• nervous system
• digestive system”

Hmmm, so kidney disease can cause you to lose too much potassium, which can then interfere with the proper functioning of your kidneys. Doesn’t sound good to me. But, remember that the condition is congenital and will show up at birth.

Let’s say it does. Then what? According to Verywellhealth at https://www.verywellhealth.com/bartter-syndrome-2860757:

“Treatment of Bartter syndrome focuses on keeping the blood potassium at a normal level. This is done by having a diet rich in potassium and taking potassium supplements if needed. There are also drugs that reduce the loss of potassium in the urine, such as spironolactone, triamterene, or amiloride. Other medications used to treat Bartter syndrome may include indomethacin, captopril, and in children, growth hormone.”

Food rich in potassium? I’m sure bananas came directly into your mind but there are others. I chose to use the National Kidney Foundation’s list of high potassium foods at https://www.kidney.org/atoz/content/potassium since this is a blog about CKD. “What foods are high in potassium (greater than 200 milligrams per portion)? The following table lists foods that are high in potassium. The portion size is ½ cup unless otherwise stated. Please be sure to check portion sizes. While all the foods on this list are high in potassium, some are higher than others.

High-Potassium Foods
Fruits	Vegetables	Other Foods
Apricot, raw (2 medium) dried (5 halves)	Acorn Squash	Bran/Bran products
Avocado (¼ whole)	Artichoke	Chocolate (1.5-2 ounces)
Banana (½ whole)	Bamboo Shoots	Granola
Cantaloupe	Baked Beans	Milk, all types (1 cup)
Dates (5 whole)	Butternut Squash	Molasses (1 Tablespoon)
Dried fruits	Refried Beans	Nutritional Supplements: Use only under the direction of your doctor or dietitian.
Figs, dried	Beets, fresh then boiled
Grapefruit Juice	Black Beans
Honeydew	Broccoli, cooked	Nuts and Seeds (1 ounce)
Kiwi (1 medium)	Brussels Sprouts	Peanut Butter (2 tbs.)
Mango(1 medium)	Chinese Cabbage	Salt Substitutes/Lite Salt
Nectarine(1 medium)	Carrots, raw	Salt Free Broth
Orange(1 medium)	Dried Beans and Peas	Yogurt
Orange Juice	Greens, except Kale	Snuff/Chewing Tobacco
Papaya (½ whole)	Hubbard Squash
Pomegranate (1 whole)	Kohlrabi
Pomegranate Juice	Lentils
Prunes	Legumes
Prune Juice	White Mushrooms, cooked (½ cup)
Raisins	Okra
	Parsnips
	Potatoes, white and sweet
	Pumpkin
	Rutabagas
	Spinach, cooked
	Tomatoes/Tomato products
	Vegetable Juices”

I also have a list of food sensitivities, so I avoid those foods. If you do, too, you might want to cross those foods off your high potassium foods list if you just happen to have Bartter syndrome.

Time for a few personal notes here. Thank you all for your well wishes and good cheer. Via a clinical trial, I have been able to shrink the pancreatic cancer tumor by two thirds and bring my blood tumor marker down to BELOW normal. This raises my chances for a successful Whipple surgery from 50% to 70% and that’s before another round of chemotherapy with radiation added. Hopeful? You bet! I also wanted to remind you that the SlowItDownCKD series makes a wonderful graduation, wedding, and Father’s Day gift for those new to Chronic Kidney Disease, those not new to Chronic Kidney Disease, and those who would like to share CKD with others in their lives.

Until next week,

Keep living your life!

That’s Not a Kind of Kidney Disease. Or Is It?

It’s like I’m attuned to anything kidney. After eleven years of writing about Chronic Kidney Disease, I’ll bet I am. Sometimes, it’s the smallest connection that triggers something in my mind. For example, Sjögren’s syndrome kept nagging at me, although I’d never heard of it as a sort of kidney disease. So, what was it and what did it have to do with the kidneys? I went right to the Sjögren’s Syndrome Foundation at https://info.sjogrens.org/conquering-sjogrens/sjogrens-kidney-disease for information.

“Sjögren’s & Kidney Disease

by Philip L. Cohen, MD, Professor of Medicine, Temple University School of Medicine 

About 5% of people with Sjögren’s develop kidney problems. In most of these patients, the cause is inflammation around the kidney tubules, where urine is collected, concentrated, and becomes acidic. The infiltrating blood cells (mostly lymphocytes) injure the tubular cells, so that the urine does not become as acidic as it should. This condition, called distal renal tubular acidosis, is frequently asymptomatic, but can cause excessive potassium to be excreted in the urine, and may lead to kidney stones or (very rarely) low enough blood potassium to cause muscle weakness or heart problems. Very occasionally, injury to the renal tubules can cause impairment in the ability to concentrate urine, leading to excessive urine volume and increased drinking of fluids (nephrogenic diabetes insipidus).

A smaller number of patients with Sjögren’s may develop inflammation of the glomeruli, which are the tiny capillaries through which blood is filtered to produce urine. This may cause protein to leak into the urine, along with red blood cells. Sometimes a kidney biopsy is needed to establish the exact diagnosis and treatment. Treatment options may include corticosteroids and immunosuppressive drugs to prevent loss of kidney function.

This information was first printed in The Moisture Seekers, SSF’s patient newsletter for members.”

This reminds me of when I was teaching critical thinking on the college level. First, we’d hit the class with an article about something foreign to them and then, we’d show them how to figure out what it meant. For our purposes, a few explanations and perhaps a diagram or two might be a good place to start.

Tubules, huh? What are those? Actually, the word just means tube shaped. Remembering that renal and kidney mean the same thing, we can see the problem area.

Here’s another picture. This one to show you glomeruli.

Now remember, CKD patients are usually limited as to how much fluid they can drink per day. Too much forces the kidneys to work too hard to clear the urine from your body. Remember the car analogy from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease?

As for potassium, that’s one of the electrolytes CKD patients need to be aware of. This article by Dr. Parker on Healthy Way at http://www.bmj-health.com/what-does-potassium-do/ explains:

“Potassium does many important functions in the body. This essential mineral is mainly found inside the cells of our body. Low potassium levels are associated with many health conditions including hypertension, irregular heartbeat, and muscle weakness. We should take adequate amounts of potassium-rich foods for a healthy life.

Potassium is essential for the heart

We need potassium to maintain the blood pressure within normal range. There should be a balance between sodium and potassium in the body to regulate our blood pressure. Too much sodium and too little potassium can elevate your blood pressure.

In addition, potassium is needed for the contraction of the heart. Potassium levels in the blood should be kept nearly constant or within a narrow range for the proper pumping action of the heart. The heart may stop beating if we have high or low levels of potassium in the blood.

We need potassium for stronger muscles

Most of the potassium in the body is found inside the muscle cells. It is the main positively charged ion inside the cells. It is essential for the contraction of muscles. Low levels of potassium are associated with muscle twitching, cramps and muscle weakness. Very low levels can cause paralysis of the muscles.

Hypokalemic periodic paralysis is a disorder that causes occasional episodes of muscle weakness and paralysis caused by lower levels of potassium in the blood. It is a genetic condition that runs in families.

It is essential for nerve conduction

Sodium and potassium are needed to maintain the electrical potential across the nerve cells. This electrical charge is essential for the conduction of nerve signals along the nerves.

It protects from stroke

Researchers found eating potassium-rich foods is associated with reduced incidents of stroke. A recent study conducted in postmenopausal women supports the findings. One of the co-researchers says, ‘post-menopausal women should eat more potassium-rich foods, such as fruits, vegetables, beans, milk and unprocessed meats in order to lower their risk of stroke and death’.

It is important for water and electrolyte balance in the body

Water and electrolyte balance is maintained by the kidneys. This is one of the important functions of the kidneys. Aldosterone, a hormone secreted by the adrenal glands plays the primary role in the balance of sodium and potassium.

The normal blood level of potassium is 3.5 to 5 mmol/l. A level of less than 3.5 is called hypokalemia, and more than 5 is called hyperkalemia. To achieve the normal blood level, we need to take about 4 to 5 grams of potassium per day. An average size banana will provide about 25% of daily requirement.

It is recommended to eat foods that have plenty of potassium. In addition, your diet should contain low amounts of sodium (salt). Taking supplements is not a good idea. It can cause many side effects.

People who have certain medical conditions such as chronic kidney failure should not eat large amounts of potassium-rich foods.

People who take certain types of medications should consult a doctor about their potassium intake. Some may need additional intake while others may need to restrict the intake of potassium rich foods.”

So, while Sjögren’s syndrome may not be a kind of kidney disease, it can affect your kidneys. Thanks for keeping me company while I made the connection for myself.

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!

Pancreas + Kidneys = ?

31 years ago, my father died of pancreatic cancer. For some reason, I remember him asking me what electrolytes were as soon as he was diagnosed. I didn’t know. I do now, but I don’t know if there’s a connection between the pancreas and the kidneys. Of course, I mean other than the fact that they are all organs in your body.

Oh, sorry, I didn’t give you the definition. This is from Healthline at https://www.healthline.com/nutrition/electrolytes  :

“’Electrolyte’ is the umbrella term for particles that carry a positive or negative electric charge ….

In nutrition, the term refers to essential minerals found in your blood, sweat and urine.

When these minerals dissolve in a fluid, they form electrolytes — positive or negative ions used in metabolic processes.

Electrolytes found in your body include:

• Sodium
• Potassium
• Chloride
• Calcium
• Magnesium
• Phosphate
• Bicarbonate

These electrolytes are required for various bodily processes, including proper nerve and muscle function, maintaining acid-base balance and keeping you hydrated.”

Ummm, you have Chronic Kidney Disease. These are the electrolytes you need to keep an eye on, especially sodium, potassium, and phosphate. But why did Dad ask me about them?

I plunged right in to find the answer and immediately found a journal article… on a pay site. Not being one to pay for what can be found for free (and is 30 years old, by the way), I decided to look for as much information on the pancreas as I could find and see what we could figure out together.

Let’s start at the beginning. According to the Sol Goldman Pancreatic Cancer Research Center of Johns Hopkins Medicine – Pathology at http://pathology.jhu.edu/pc/basicoverview1.php?area=ba:

“What is the pancreas?

The pancreas is a long flattened gland located deep in the belly (abdomen). Because the pancreas isn’t seen or felt in our day to day lives, most people don’t know as much about the pancreas as they do about other parts of their bodies. The pancreas is, however, a vital part of the digestive system and a critical controller of blood sugar levels.

Where is the pancreas?

The pancreas is located deep in the abdomen. Part of the pancreas is sandwiched between the stomach and the spine. The other part is nestled in the curve of the duodenum (first part of the small intestine). To visualize the position of the pancreas, try this: touch your right thumb and right ‘pinkie’ fingers together, keeping the other three fingers together and straight. Then, place your hand in the center of your belly just below your lower ribs with your fingers pointing to your left. Your hand will be the approximate shape and at the approximate level of your pancreas.”

I tried that. It’s not as easy as it sounds.

So now we sort of know what and where it is, but what does it do? No problem, Columbia University Irving Medical Center has just the info we need at http://columbiasurgery.org/pancreas/pancreas-and-its-functions:

“Exocrine Function:

The pancreas contains exocrine glands that produce enzymes important to digestion. These enzymes include trypsin and chymotrypsin to digest proteins; amylase for the digestion of carbohydrates; and lipase to break down fats. When food enters the stomach, these pancreatic juices are released into a system of ducts that culminate in the main pancreatic duct. The pancreatic duct joins the common bile duct to form the ampulla of Vater which is located at the first portion of the small intestine, called the duodenum. The common bile duct originates in the liver and the gallbladder and produces another important digestive juice called bile. The pancreatic juices and bile that are released into the duodenum, help the body to digest fats, carbohydrates, and proteins.

Endocrine Function:

The endocrine component of the pancreas consists of islet cells (islets of Langerhans) that create and release important hormones directly into the bloodstream. Two of the main pancreatic hormones are insulin, which acts to lower blood sugar, and glucagon, which acts to raise blood sugar. Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys.”

The kidneys? Now it’s starting to make sense. We need whatever specific electrolyte balance our lab work tells us we need to keep our kidneys working in good stead and we need a well-functioning pancreas to regulate our blood sugars. Hmmm, diabetes is one of the two leading causes of CKD. It seems the pancreas controls diabetes since it creates insulin.

What could happen if the pancreas wasn’t doing its job, I wondered.  This is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/pancreatitis/symptoms-causes/syc-20360227,

“Pancreatitis [Me here: that’s an inflammation of the pancreas] can cause serious complications, including:

• Pseudocyst. Acute pancreatitis can cause fluid and debris to collect in cystlike pockets in your pancreas. A large pseudocyst that ruptures can cause complications such as internal bleeding and infection.
• Infection. Acute pancreatitis can make your pancreas vulnerable to bacteria and infection. Pancreatic infections are serious and require intensive treatment, such as surgery to remove the infected tissue.
• Kidney failure. Acute pancreatitis may cause kidney failure, which can be treated with dialysis if the kidney failure is severe and persistent.
• Breathing problems. Acute pancreatitis can cause chemical changes in your body that affect your lung function, causing the level of oxygen in your blood to fall to dangerously low levels.
• Diabetes. Damage to insulin-producing cells in your pancreas from chronic pancreatitis can lead to diabetes, a disease that affects the way your body uses blood sugar.
• Malnutrition. Both acute and chronic pancreatitis can cause your pancreas to produce fewer of the enzymes that are needed to break down and process nutrients from the food you eat. This can lead to malnutrition, diarrhea and weight loss, even though you may be eating the same foods or the same amount of food.
• Pancreatic cancer. Long-standing inflammation in your pancreas caused by chronic pancreatitis is a risk factor for developing pancreatic cancer.

Did you catch kidney failure and diabetes? I believe we now know how the kidneys and pancreas are related to each other. Ah, if only I’d known how to research 31 years ago….

Until next week,

Keep living your life!

Bulking Up

While I make sure to state that I’m not a doctor, I’m not always certain my readers get that. This is why I was so glad that a reader asked me a question about her doctor’s advice, prefacing her question by stating that she knows I’m not a doctor. I feel better.

Her question? It’s about fiber and Chronic Kidney Disease. But first, let’s find out exactly what fiber is. According to Harvard’s T. H. Chan School of Public Health at https://www.hsph.harvard.edu/nutritionsource/carbohydrates/fiber/,

“Fiber comes in two varieties, both beneficial to health:

• Soluble fiber, which dissolves in water, can help lower glucose levels as well as help lower blood cholesterol. Foods with soluble fiber include oatmeal, nuts, beans, lentils, apples and blueberries.

• Insoluble fiber, which does not dissolve in water, can help food move through your digestive system, promoting regularity and helping prevent constipation. Foods with insoluble fibers include wheat, whole wheat bread, whole grain couscous, brown rice, legumes, carrots, cucumbers and tomatoes.

The best sources of fiber are whole grain foods, fresh fruits and vegetables, legumes, and nuts.”

We all know people need fiber, but do you know why? I found the answer stated the most succinctly on Verywell Fit’s site at https://www.verywellfit.com/all-about-fiber-2242215.

“Besides reducing the glycemic effect of meals and contributing to colon health, there is evidence that fiber may benefit us in other ways. It seems to help lower cholesterol and triglycerides, and also may help to prevent:

• Ulcers, particularly in the beginning of the small intestine (duodenal ulcers)
• Diabetes
• Heart Disease
• Cancer”

As a diabetic, I understand why I need fiber, but what about as a CKD patient? DaVita at https://www.davita.com/diet-nutrition/articles/basics/fiber-in-the-kidney-diet has that one covered:

“Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

• Keeps GI (gastrointestinal) function healthy
• Adds bulk to stool to prevent constipation
• Prevents diverticulosis (pockets inside the colon)
• Helps increase water in stool for easier bowel movements
• Promotes regularity
• Prevents hemorrhoids
• Helps control blood sugar and cholesterol”

Hmmm, this is very similar to reasons why everyone – CKD or not – should pay attention to fiber. But, take a look at this list of high fiber foods from the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948:

Fruits                                              Serving size              

Raspberries	1 cup	8.0
Pear	1 medium	5.5
Apple, with skin	1 medium	4.5
Banana	1 medium	3.0
Orange	1 medium	3.0
Strawberries	1 cup	3.0

 

Vegetables	Serving size	Total fiber (grams)*
Green peas, boiled	1 cup	9.0
Broccoli, boiled	1 cup chopped	5.0
Turnip greens, boiled	1 cup	5.0
Brussels sprouts, boiled	1 cup	4.0
Potato, with skin, baked	1 medium	4.0
Sweet corn, boiled	1 cup	3.5
Cauliflower, raw	1 cup chopped	2.0
Carrot, raw	1 medium	1.5

 

Grains	Serving size	Total fiber (grams)*
Spaghetti, whole-wheat, cooked	1 cup	6.0
Barley, pearled, cooked	1 cup	6.0
Bran flakes	3/4 cup	5.5
Quinoa, cooked	1 cup	5.0
Oat bran muffin	1 medium	5.0
Oatmeal, instant, cooked	1 cup	5.0
Popcorn, air-popped	3 cups	3.5
Brown rice, cooked	1 cup	3.5
Bread, whole-wheat	1 slice	2.0
Bread, rye	1 slice	2.0

 

Legumes, nuts and seeds	Serving size	Total fiber (grams)*
Split peas, boiled	1 cup	16.0
Lentils, boiled	1 cup	15.5
Black beans, boiled	1 cup	15.0
Baked beans, canned	1 cup	10.0
Chia seeds	1 ounce	10.0
Almonds	1 ounce (23 nuts)	3.5
Pistachios	1 ounce (49 nuts)	3.0
Sunflower kernels	1 ounce	3.0

*Rounded to nearest 0.5 gram.

Source: USDA National Nutrient Database for Standard Reference, Legacy Release

Looks delicious, doesn’t it. So what’s the problem? Well, CKD patients are restricted in their diets… and even the permissible foods are restricted as far as amounts we can eat. It all depends upon our most current lab results. Do we need less potassium? Then we need to eat even less potassium rich food. The same is true for all the electrolytes. That means our diets may not contain enough fiber.

CKD is an inflammatory disease. Fiber can lower inflammation. So what’s a CKD patient to do?

My reader was recommended supplements by her doctor. One was Solfi Green, something new to me.

I went to MIMS in the Philippines (while a new site to me, they self-describe as “Asia’s one-stop resource for medical news, clinical reference and education”)  at https://www.mims.com/philippines/drug/info/solfi%20green?type=full  for the ingredients and found this:

“Ingredients: Fructose, Mixed Fruit Powder, Mixed Vegetable Powder, Soluble Dietary Fiber, Physllium (sic) Husk, Oat Fiber, Wheat Fiber, Citric Acid, Wheat Grass, Alfalfa, Rooibos Extract, Contains Permitted Food Conditioner.”

Wait a minute, Psyllium Husk? I clearly remember writing that this can cause inflammation of the gastrointestinal tract. We need to decrease, not increase inflammation as CKD patients. I would steer clear of this.

Would my reader need to steer clear if she were a dialysis or transplant patient? Drugs.com at https://www.drugs.com/drug-interactions/psyllium.html  doesn’t seem to think any specific dosage reduction is necessary, but they also don’t mention it can cause inflammation or that it is high in potassium. Dialysis patients, beware. If you’re a transplant, you simply need to watch your labs as you would anyway. Just keep in mind psyllium husk can be both an inflammatory and laxative.

Another supplement suggested to my reader is C-lium fiber. I went directly to their website at http://c-liumfibre.com/faq/index.html#Q15  and found this warning in their FAQ:

“If you have rectal bleeding, history of intestinal blockage, difficulty swallowing, diabetes mellitus, heart disease, hypertension, kidney disease, or if you are on a low-sugar or low-sodium diet, contact your doctor before taking C-Lium Fibre.”

Obviously, my reader has gone to her doctor since these two supplements were prescribed by her doctor. I have to make a confession here. When something is prescribed for me, I research it. If I don’t like what I find, I speak with my doctor. If she can explain in more detail or tell me something that is not in my research which I should be aware of to make an informed decision and it’s all positive, I go with the prescription. If not, well….

Of course, you have to make your own decision, just as I do. Here’s hoping this has helped my reader.

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

“THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

“Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars“

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20^th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“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”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

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!

 

Dare You Have Your First Mother’s Day?

Mother’s Day is this Sunday… and it’s my step-daughter’s first. That led me to remember my first with Ms. Nima Beckie Rosensfit and  I realized I’d never even heard of Chronic Kidney Disease then. But what if I had and I wanted to have a baby. What would I have to know?

That got me going. I know I blogged about this topic in February of this year, but I wanted to see if there was enough information for a part 2 to that blog. But, first, let’s take a look at how pregnancy affects the kidneys in a non-ckd woman.

The US National Library of Medicine, National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4089195/  helpful here:

“GFR rises early to a peak of 40% to 50% that of prepregnancy levels, resulting in lower levels of serum creatinine, urea, and uric acid. There is a net gain of sodium and potassium, but a greater retention of water, with gains of up to 1.6 L. Through effects of progesterone and alterations in RAAS, the systemic vascular resistance falls, leading to lower blood pressure and an increased RPF.”

You may need a reminder of some of these terms. Let’s see if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease has their definitions. Aha! There are potassium and creatinine.

““Creatinine is … a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger.

“Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Why is this counteraction important you ask.  This tidbit from SlowItDownCKD 2011 explains:

“Then I found this in BrightHub.com’s February 13th article The Importance of the Potassium and Sodium Balance.

‘When there is potassium and sodium balance, cells, nerves and muscles can  all  function  smoothly.  With  an  imbalance,  which  is almost  always due to both an excess of sodium, and a deficiency of potassium, a set of reactions occurs leading to high blood pressure and unnecessary strain on blood vessels, the heart and the kidneys. Research has shown that there is a direct link between chronic levels of low potassium and kidney disease, lung disorders, hypertension and stroke’.”

And urea? The newly published SlowItDownCKD 2017 contains this information:

“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).’”

It’s probably common knowledge that serum means in the blood rather than urine and that uric acid is the waste that remains when your body’s cells die. What baffled me was RAAS and RPP. It turns out that RAAS is renin-angiotensin-aldosterone system which, while interesting, would simply take too long to explain for this blog’s purpose. RPF is renal plasma flow. I love words, but this was getting to be a bit much for even me. I wanted to get to CKD in pregnancy. So let’s do that.

Let’s say I needed more reassurance that I could have a baby even though I had CKD. I felt like I found just that when I discovered RareRenal  at http://rarerenal.org/patient-information/pregnancy-and-chronic-kidney-disease-patient-information/and what they had to say about pregnancy and CKD.

“Good antenatal care from the earliest stages of pregnancy improves outcomes generally. This is particularly true for women with CKD. Planning for pregnancy allows women with CKD to get pregnant at the right time, while on the right medications and in the best possible health. To achieve this all women with significant CKD should receive pre-pregnancy advice so that they can assess the potential risk and to ensure that everything is in place to minimise it.

These are the key things to think about before getting pregnant:

When should a woman with CKD get pregnant?  This depends on the nature of the kidney disease. In general if a woman’s kidney function is likely to get worse over time it is better to plan the pregnancy sooner rather than later while function is still good. On the other hand, for a kidney disease that flares up and then settles down, such as Lupus nephritis, it is better to wait until the flare has settled for at least six months. Other factors to take into account are a woman’s age and fertility. They may have had drugs in the past to treat a kidney condition that can impair fertility (e.g. cyclophosphamide). If so they may need to take advice on whether this is an additional problem. Should she get pregnant at all? There are very few women these days who are advised not to get pregnant. Even then it is always up to the woman (and her partner) whether to take the risk. It is much better to be forewarned of the possible problems and to discuss these in advance.

Will she need extra medicines when she’s pregnant?  Women trying to get pregnant should start taking the vitamin folic acid to reduce the chance of their baby having spina bifida, an abnormality of the spinal cord. The normal dose of folic acid is 400ug per day and can be bought over the counter. However, if the folate level is low or a patient is on the drug azathioprine which affects the way folic acid works, the dose of 5mg daily may be prescribed. No other over the counter vitamins are required unless specifically advised by a doctor or midwife. All pregnant patients should avoid additional supplements of vitamin A. If vitamin D levels are low GPs will advise correction with high dose prescribed vitamin D (also known as cholecalciferol). Women with kidney diseases are at higher risk of pre-eclampsia. Aspirin lowers the risk of pre eclampsia, and women with CKD are usually offered a low dose aspirin (75mg once daily) throughout pregnancy unless there are specific reasons not to take it e.g. they are allergic to aspirin. Pregnant women with a high level of protein in their urine have an increased risk of developing blood clots (thrombosis). This can be reduced by small daily injections of low molecular weight heparin. Heparin reduces the way the blood clots. Both pregnancy and CKD can cause a low blood count (anaemia). When combined, anaemia can be more of a problem. Iron tablets or injections may be used and some women need to take the hormone erythropoietin (EPO) as  a weekly or monthly injection to overcome the anaemia. Blood transfusions are usually avoided in pregnancy. Pregnancy alters the control of sugar (glucose) in the body. This may be worse for patients on steroids (e.g. prednisolone), those from an Asian or African background, or who are overweight. Patients may develop a condition called gestational diabetes (diabetes caused by pregnancy) and require treatment with insulin.” How very reassuring. I’m ready… I mean are you ready to have your baby?

Until next week,

Keep living your life!

Smoke Gets In Your Hair

Last weekend I was in Las Vegas renewing my vows to Bear as my brother and sister-in-law renewed their vows to each other. It was their 50th year of marriage, our 5th. I listened to what they had to say to each other during the ceremony and realized that was what I would have said to Bear on our 50th, if we were young enough to be able to count on having a 50th. And then I began to wonder how many people do reach this milestone in their lives.

More than the ceremony, it was the smoke in the casinos, the restaurants, the shops, and the cabs that got me to thinking about this. Even our non-smoking rooms had the scent of cigarettes. I know how much harm smoking can do to my kidneys, but what was this second hand smoke doing to them? If it clung to our hair and clothes, what else was it doing to us?

The very minute I was told I have CKD, I stopped the social smoking I had been doing. I would be surprised if I smoked a whole pack of cigarettes each month back then. But I wasn’t taking any chances on not raising my GFR. It was 39% at diagnose, so the smoking had to stop. Yet, it wasn’t until this past weekend that I became concerned about second hand smoke.

It appears that I’m not the only one concerned about second hand smoke. The National Kidney Fund (NKD) at https://www.kidney.org/blog/staying-healthy/second-hand-smoke-may-be-harmful-kidneys offers the following:

“Secondhand smoking was defined as living with at least 1 person who smoked, or having an elevated level of cotinine (a breakdown product of nicotine) in their blood. The researchers found that active smoking was associated with slightly lower kidney function and higher amounts of protein in the urine. Interestingly, secondhand smoke exposure was also associated with slightly lower kidney function in this study even after taking [into] account differences in age, sex, weight, demographics and parental education level. Differences in kidney function observed in the study were relatively small, but these small differences could have important effects on risk of developing hypertension and chronic kidney disease.”

What makes it worse is that hypertension, or high blood pressure, is one of the two leading causes of CKD. So second hand smoke could lead to CKD itself and/or one of the leading causes of CKD. Either way, it sounds like a losing proposition to me.

Of course, I needed to know more about cotinine. The Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/biomonitoring/Cotinine_FactSheet.html was able to help me out here:

“Cotinine is a product formed after the chemical nicotine enters the body. Nicotine is a chemical found in tobacco products, including cigarettes and chewing tobacco. Measuring cotinine in people’s blood is the most reliable way to determine exposure to nicotine for both smokers and nonsmokers exposed to environmental tobacco smoke (ETS). Measuring cotinine is preferred to measuring nicotine because cotinine remains in the body longer.

How People Are Exposed to Cotinine

Nicotine enters people’s bodies when they smoke or chew tobacco. When exposed to ETS from nearby smokers, smaller amounts of nicotine enter the body of the nonsmoker. Workers who harvest tobacco and produce tobacco products can also be exposed through their skin.”

While I don’t usually write about younger people and Chronic Kidney Disease, this quote from the Johns Hopkins Bloomberg School of Public Health at https://www.jhsph.edu/news/news-releases/2013/navas-acien-smoking-may-impact-kidney-function-among-adolescents.html caught my eye:

“’Tobacco use and exposure to secondhand tobacco smoke are major health problems for adolescents, resulting in short-term and long-term adverse health effects,’ said Ana Navas-Acien, MD, PhD, senior author of the study and an associate professor with the Bloomberg School’s Department of Environmental Health Sciences. ‘In this nationally representative sample of U.S. adolescents, exposure to tobacco, including secondhand smoke and active smoking, was associated with lower estimated glomerular filtration rates—a common measure of how well the kidneys are working. In addition, we found a modest but positive association between serum cotinine concentrations, a biomarker of tobacco exposure, among first-morning albumin to creatinine ratio. These findings further support the conclusion that tobacco smoke may damage the kidneys.’”

Lower estimated glomerular filtration rates???? No, thank you. I rarely go to casinos or any other place that allows smoking for that matter. I just don’t like the odor. Now I have a much more important reason to avoid such places.

Switching topics here. Something else I rarely mention is CKD cookbooks, probably because I don’t cook that often and firmly believe CKD patients need to eat according to their lab results. Months ago I received one such book in the mail and carefully explained to the author’s representatives that I don’t review CKD cookbooks on the blog. It’s an attractive book and always caught my eye just lying there on the kitchen counter for the last several months. During one of those in-the-house-trying-to-recoup-my-energy days after we got back from Las Vegas, I did the logical thing and picked it up to read.

Susan Zogheib, a registered dietitian with a Master’s in Health Science fulfilled my CKD cookbook dreams in her The Renal Diet Cook for the Newly Diagnosed in that she suggested repeatedly that we, as CKD patients, must work on our diets with our doctors and/or renal dietitians, especially if we have high blood pressure or diabetes. I also like that she clearly made the point that you have to take into account the stage of your CKD, your labs, your concurrent medical problems, and more. This, while including fairly easy recipes for some good looking meals. I never thought I’d like a cookbook. Well, there was the Betty Crocker one pre-CKD when I was a young bride still in college.

My 71st birthday is Friday. Naturally that means it’s time for a book giveaway. My birthday equals your gift. Three is my favorite number, so the first three book giveaway virgins (haven’t won a book before) to offer another bit of information about second hand smoke or CKD cookbooks win one of my CKD books. Sounds fair to me.

Until next week,
Keep living your life!

Apps Again

Last week I mentioned kidney diet apps and that I suspected the ones I wrote about in SlowItDownCKD 2016 may be outdated or not exist anymore. Let’s jump right in before I need to get up from the computer to walk around for a while. I’ve been working on another book and been sitting here a long time. We all know that’s not good for us.

This is from SlowItDownCKD 2016:

“According to GCFLearnFree.org – a program of Goodwill Community Foundation® and Goodwill Industries of Eastern NC Inc.® (GIENC®) – at http://www.gcflearnfree.org/computerbasics/understanding-applications/1/,

‘Simply put, an app is a type of software that allows you to perform specific tasks. Applications for desktop or laptop computers are sometimes called desktop applications, while those for mobile devices are called mobile apps.’

During an internet search, I found that NephCure which provides ‘detailed information about the diseases that cause Nephrotic Syndrome (NS) and Focal Segmental Glomerulosclerosis (FSGS)’ (and was one of the first organizations to interview me about CKD, by the way) – at http://nephcure.org/livingwithkidneydisease/managing-your-care/kidney-health-tracking-tools/helpful-mobile-apps/ was way ahead of me in discussing apps. This is what’s on their website:

Diet and Nutrition Apps

• KidneyAPPetite – Gives daily summaries of key nutrients for kidney health, check the nutritional value of foods before you eat it, and provides printable summaries to refer to. Great for patients on a renal diet! Cost: Free, Device: iOS

• Pocket Dietitian – Created by a Nephrologist, allows you to choose your health conditions and dietary restrictions to see recommended foods as well as keep track of what you have eaten. You can even see your past nutrition in graph form. Cost: Free, Device: iOS and Android

• My Food Coach – is designed to help you understand and manage all of your nutritional requirements. This app offers personalized nutrition information, recipes and meal plans. Cost: Free, Device: iOS and Android

• HealthyOut – Enables you to search and order nearby healthy food and browse for healthy options while out to eat. You can even choose a specific diet such as gluten free! Cost: Free, Device: iOS and Android

• Restaurant Nutrition – Allows you to search restaurants and look at nutritional values, locate nearby restaurants, and keep a food journal. The Restaurant Nutrition application shows nutritional information of restaurant foods. Cost: Free, Device: iOS and Android

While I could easily go to most of the apps’ websites by clicking on the name while I held down the control button, this was not the case with Pocket Dietician. I was able to find it and lots of descriptive information about it in the Google Play store, but kept getting the message that I had no devices. The help function on the site was not helpful.

What about My Food Coach? It has an extra feature that my favorite lacked: a warning when a recipe would bring you over your renal diet limits. It’s recipe oriented, which doesn’t endear it to me since I like to experiment cooking my big five ounces of protein daily with my three different size servings of different fruits that are on my renal diet. I also avoid red meat.

HealthyOut, while not specifically for CKD, does have a function for the Mediterranean diet which is more often than not recommended for us. I thought this was a hoot since it never occurred to me that you can check restaurant foods by the restaurant name. I am adding this app to my iPhone.”

It looks like I was wrong. Most of these are still available. Unfortunately KidneyDiet, my all-time favorite, is no more. Neither is Restaurant Nutrition. But let’s see what other apps are available for us.

If sodium (salt) is a problem for you, there’s an app for that. According to For Your Kidney at http://foryourkidney.com/en/2016/01/04/5-best-apps-kidney-health/:

“Sodium One is a user friendly Sodium Counter app. Patients with High Blood Pressure or Chronic Kidney Disease can benefit from this app a lot. The App allows you to track water intake as well as exercise and weight history. The main focus of Sodium One however, is to manage your daily sodium allowance. The tracking is actually very accurate when it comes to calorie counts. A great extra is that this app does not require an internet connection.”
This is $0.99 and only available in IOS. That’s Apple.

I do want to mention there are apps specifically for those on dialysis. I have not included them in this blog, although NephCure did include KidneyAPPetite. An internet search for ‘dialysis apps,’ or something along that line, will help you find them.

I’ve tried a few other apps that were not dedicated to those with CKD and found moderate success with them. One is Keto, which bills itself as “Stupid Simple”… and it is. However, it’s limited to carbs, fat, and protein. You’re on your own for phosphorous, potassium, and sodium. Oh, KidneyDiet, come back! The nice part of Keto is that you can scan barcodes (Is that really one word these days?) and add your own foods and meals IF you upgrade from the basic free version. Their website at https://play.google.com/store/apps/details?id=com.venninteractive.ssketo  tells you this is only available for Android, but I have it on my IOS device.

Under Armour’s MyFitnessPal at https://freepps.top/apps/health-fitness/calorie-counter-myfitnesspal has been around for a while. Again, while this is not perfect for those with CKD, it is a great help. I like that you can set goals and request reminders about your goal, as well as add foods. Of course, Premium offers you a lot more… and charges you accordingly. Articles about exercise and weight pop up, too. And then there are recipes. Again, it doesn’t do the whole trick, although it does count potassium, protein, sodium and calories . What’s missing is phosphorous. The bonuses are carb, fat (by type, no less) cholesterol, fiber, sugar, vitamins A & C, calcium, and iron counters. This is also a free Apple app.

Lose It! at https://www.loseit.com/ is not as comprehensive for the CKD patient. It allows you to track fat, carbs, protein, and calories. Here, again, you can set your goals. You can even take pictures of your food to track it. However, I find I want something more CKD oriented with potassium, phosphorous, and sodium counters included. This looks like it may be a good app for weight loss, but I’m wondering how much help it is for the CKD patient.. This is a free Android app.

At this point, I stopped checking out apps. There are so many more in just a little over the year I last looked at apps. But they’re not quite for the likes of us. It looks like MyFitnessPal is the closest we can come to a kidney app, unless you’re on dialysis. Then I’d go for KidneyAPPetite.

Before I go, here’s a shameless plug for my new book. It’s Sort of Dark Places, available on Amazon and is not CKD related at all. I’ve fictionalized the stories people have told me about their most difficult times. I found it cathartic to write even though these are not my stories. Advance readers have told me they did, too. Give it a try.

In honor of the great Dr. Martin Luther King’s birthday, the first person who hasn’t already won a free book that lets me know they’ve read today’s blog wins a copy of SlowItDownCKD 2012.

Until next week,
Keep living your life!

The Elusive Diet Plan

I find it amazing, absolutely amazing, how limited my diet has become in the last decade. It’s not just the renal diet, or even the renal diet with the prediabetes way of eating added. I had some testing done and found ‘food sensitivities’ as well as out and out allergies that needed attention. And now? It turns out I have Irritable Bowel Syndrome or IBS, which requires I change my eating habits yet again.

When I was first diagnosed with Chronic Kidney Disease, I was introduced to the Northern Arizona Council on Renal Nutrition Diet. I reproduced that in SlowItDownCKD 2015 and here it is again…still crooked. (Can I blame that on macular degeneration? No? Oh well.) Unfortunately for me, I can’t just “limit,” which is what the second column on each page suggests, so I have to avoid. One exception leads to a second and then a third, so to me, “limit” means Do.not.eat.

I understood I had to limit my phosphorous, potassium, protein, and sodium to preserve my kidney function and was scared enough by my diagnosis to follow this diet religiously, recording the amounts I ate in a little notebook. Nowadays, there are apps that will help you track these electrolytes. I listed a few in SlowItDownCKD 2016, but that list surely needs updating a full year or more later. Perhaps I should write about that next week.

Back to the renal diet. This meant changes for me, lots of them. My staple – bread – would now be limited, as would potatoes. I am so the grandchild of my grandfather, a Russian miller. I am also lactose intolerant so those limitations were not a problem since I didn’t eat dairy in the first place. The measuring is what I had to get used to in all categories… and I did, to the point where I can eye measure just about all the foods.

Then came the pre-diabetes dietary changes. My A1C was continually elevated. I didn’t want to develop diabetes, so I knew this test that measures blood glucose had to start registering lower readings. Hmmm, I was able to adhere to the renal diet. I’ll just modify that with these new changes, I thought.

Writing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2  helped me  understand how to do this:

“Ahh! So all carbohydrates, whether from starches or sugars break down into sugar glucose. This is starting to sound familiar. When I brought my pre-diabetes to the nutritionist at my nephrologist’s office, she gave me quite a bit of information and a handout from DCE, a dietetic practice group of the American Dietetic Association. Did you know that starchy vegetables, fruits, juices and milk also contain carbohydrates? It hadn’t occurred to me…. The Mayo Clinic has a good diet plan for diabetes, but it won’t work for Chronic Kidney Disease patients as it is. For example, whole wheat flour raises your blood glucose less than white flour, but has too much phosphorous for us, so we are warned to avoid it. Yoghurt, cheese, beans, and nuts are no-nos on my renal diet, but are often recommended in diabetes diets.”

My diet became noticeably more limited. But I was still willing to work on it. I remembered that CKD can cause diabetes, just as diabetes can cause CKD. I had enough trouble without diabetes, thank you very much.

Boom! Enter food allergies and sensitivities. Lettuce? I was living on salads at this point, but no more unless I could get a spinach salad. I wouldn’t necessarily miss lima beans, brazil nuts, buckwheat, celery, cherries, corn, cucumbers, lamb (ugh), oranges, red raspberries, and watermelon. Whine: some of my staples were on the list, too: rice, shellfish, vanilla, and yeast. Oh yeah, the little bit of mustard I cheatingly ate every once in a while was on the allergy list, too. *sigh*

It took quite a bit of telling myself I could do this and referring to this NEW list constantly to get my now three purpose diet under control. It was especially hard during sad times in my life.

As happens (thank goodness), the sad times with their emotional eating passed and I could get back to doing what my body needed. So why was I feeling so unwell? Was it a UTI? An ulcer? Something worse?

Welcome to eating modification number four. It’s Irritated Bowel Syndrome… and stress can be the source. The stress was caused by sadness in my case: my brother’s death, a bad outcome for testing on another family member, a third one’s hospitalization, a friend’s death, another’s illness. Now that my sad times were ended, at least temporarily, I had to deal with the aftermath.

While the disease is self-explanatory and the causes apparent, I still needed to know how to treat it. The MayoClinic at https://www.mayoclinic.org/diseases-conditions/irritable-bowel-syndrome/diagnosis-treatment/drc-20360064 was helpful, but also informed me that each person with IBS may need different treatments and that there were different kinds of IBS and different tests for each kind. This is the information I found most helpful, although two more of my staples – broccoli and cauliflower – are no longer available to me.

“Your doctor might suggest that you eliminate from your diet:

• High-gas foods. If you experience bloating or gas, you might avoid items such as carbonated and alcoholic beverages, caffeine, raw fruit, and certain vegetables, such as cabbage, broccoli and cauliflower.
• Gluten. Research shows that some people with IBS report improvement in diarrhea symptoms if they stop eating gluten (wheat, barley and rye) even if they don’t have celiac disease.
• FODMAPs. Some people are sensitive to certain carbohydrates such as fructose, fructans, lactose and others, known as FODMAPs — fermentable oligo-, di-, and monosaccharides and polyols. FODMAPs are found in certain grains, vegetables, fruits and dairy products. Your IBS symptoms might ease if you follow a strict low-FODMAP diet and then reintroduce foods one at a time.”

I’m laughing right now. This could not get more complicated. Uh, maybe I shouldn’t say that. Don’t want to draw attention from the diet gods, do I? At any rate, I see this as a challenge. Until I get tired, that is. Then it’s a formidable task.

Until next week,
Keep living your life!

To Eat It Or Not To Eat It

Merry Christmas… and for tomorrow, Happy Kwaanza. Oh, all right, let’s throw in Happy Chanukah although that’s already passed this year. What all these celebrations – yes, and New Year’s Eve, too – have in common is food. And food has potassium and phosphorous in it. Those are two of the electrolytes that Chronic Kidney Disease patients have to curtail.

Let’s backtrack a little bit and find out what these are. Each was included in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Phosphorus: One of the electrolytes, works with calcium for bone formation, but too much can cause calcification where you don’t want it: joints, eyes, skin, and heart.

Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Now, let’s see if we can get a bit more information about the ill effects of having too much of either one.

This is from SlowItDownCKD 2011:

“Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

And potassium? SlowItDownCKD 2012 has the answer:

“Too much potassium can cause irregular heart beat and even heart attack. This can be the most immediate danger of not limiting your potassium.”

We all have limitations on these (as well as sodium and protein) based upon our latest blood and urine lab results. Since my lab results registered normal for both electrolytes, I have pretty generous daily limitations: potassium: 3000 mg; phosphorous: 800 mg. If you’re like me, the numbers didn’t mean much.

Let’s try this another way. My husband’s traditional family Christmas dinner consists of standing rib roast, sweet potatoes baked in orange juice with marshmallow topping, string bean casserole, dinner rolls, tea or coke, and apple pie. (I added salad so there would be something I could eat.)

We’ll need a list of high potassium and high phosphorous foods before we can to analyze the meal. Luckily, there is one for phosphorus in SlowItDownCKD 2015:

HIGH PHOSPHORUS FOOD TO LIMIT OR AVOID

Beverages:
ale                                                    beer
chocolate drinks                           cocoa
drinks made with milk                dark colas
canned iced teas

Dairy Products:
cheese                                              cottage cheese

custard                                            ice cream

milk                                                 pudding

cream soups                                  yogurt

Protein:
carp                                                crayfish
beef liver                                       chicken liver
fish roe                                          organ meats
oysters                                           sardines

Vegetables:
dried beans and peas                  baked beans
black beans                                   chick peas
garbanzo beans                            kidney beans
lentils lima                                    northern beans
pork’n beans                                 split peas
soy beans

Other foods:
bran cereals                                brewer’s yeast
caramels                                      nuts
seeds                                            wheat germ
whole grain products

Now we need a list of high potassium foods. The National Kidney Foundation at https://www.kidney.org/atoz/content/potassium was helpful here. They also have a list for “Other Foods.”:

Fruits and Vegetables:
Apricot, raw (2 medium) dried (5 halves)    Acorn Squash
Avocado (¼ whole)                                           Artichoke
Banana (½ whole)                                             Bamboo Shoots
Cantaloupe                                                          Baked Beans
Dates (5 whole)                                                  Butternut Squash
Dried fruits                                                          Refried Beans
Figs, dried                                                            Beets, fresh

then boiled
Grapefruit Juice                                                  Black Beans
Honeydew                                                            Broccoli, cooked
Kiwi (1 medium)                                                 Brussels Sprouts
Mango(1 medium)                                             Chinese Cabbage
Nectarine(1 medium)                                        Carrots, raw
Orange(1 medium)                                             Dried Beans and Peas
Orange Juice                                                       Greens, except Kale
Papaya (½ whole)                                              Hubbard Squash
Pomegranate (1 whole)                                      Kohlrabi
Pomegranate Juice                                             Lentils
Prunes                                                                    Legumes
Prune Juice                                                           White Mushrooms,

cooked (½ cup)
Raisins                                                                    Okra
Parsnips

Potatoes, white and sweet
Pumpkin  

Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices

(Looks like my formatting is on vacation. Sorry about that, folks.)

Okay, here comes the hard part. Let’s scan the lists to see which of the foods in the dinner my husband craved are on this list. I see canned iced teas, dark colas, orange juice, and sweet potatoes. The potassium and phosphorous in one serving (?) of each is as follows:

food                                  potassium                                    phosphorous
canned iced tea                    18 mg.                                            32 mg.
dark cola                               44 mg.                                            62 mg.
orange juice                       235 mg.                                            40 mg.
sweet potatoes                   542 mg.                                            81 mg.
totals                                   839 mg.                                          215 mg.

Doesn’t look bad at all, does it? But it’s all guesswork. Is your liquid serving an ounce? Eight ounces? What about the juice in the sweet potato dish? Surely it’s not just one ounce. And maybe not eight depending upon how much of the juice is in the size portion of the sweet potato dish you had. Maybe you had seconds. Same for the sweet potatoes.

Since this is not at all a precise science, you’re better off practicing more limiting rather than less. I’m not a doctor as I keep mentioning, but I don’t see anything wrong with a just a taste or a small serving of each.

Of course, I’m not a fan of soda or any canned drink, so I get a pass on that. If you’re not sure how much of what you can eat on a daily basis, make an appointment with your renal dietician after the holidays and just enjoy today’s Christmas meal.

Hey, that doesn’t give you free reign to eat all those things expressly not on your renal diet. I know if I decide to eat some of the standing rib roast, I’m still limited to five ounces of protein a day… including the hardboiled egg I had for breakfast.

Lay.off.the.salt.shaker.too. Sodium is not your friend if you have CKD. Ask your hostess if he or she has Mrs. Dash’s seasoning or garlic powder (NOT SALT) should you be asked if you’d like the salt. Oh, was the green bean casserole made with canned, creamy soup? That’s going to up the salt content. Just another thing to be aware of when salivating at the sight of the scrumptious meal in front of you today.

I’d go really light on the hot chocolate, too, if you were planning on having some. The message here is to enjoy, but limit, those high phosphorous and potassium holiday foods you really crave.

Until next week (and next year),
Keep living your life!

Decisions, Decisions

A reader asked me how I choose the articles or studies I include in the blogs. Now you’ve got to remember that researching and I go way back. I was fortunate in that Research Writing was my favorite course to teach before I retired as a community college instructor. I loved it.

I was going to give you my take on researching when I stumbled across Dr. Alicia White’s piece on the United Kingdom’s National Health Services site at https://www.nhs.uk/news/Pages/Howtoreadarticlesabouthealthandhealthcare.aspx. She’s already written what I would have, so I’m dedicating today’s blog to that. I have not reproduced all of it only because I don’t have the room in the blog for that. Oh, those are not typos; they’re the UK spelling. Take it away, Dr. White:

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On”. On reading further, you’ll often find the headline has left out something important, such as: “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually (study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. …, you need to analyse the article to see what it says about the research it is reporting on….

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. …

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. … Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t…..

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and are also more susceptible to finding things (including things that are wrong) purely by chance. … When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

…. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. …

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. … Without either, retain some healthy scepticism.

Did the study actually assess what’s in the headline?

…. For example, you might read a headline that claims: “Tomatoes reduce the risk of heart attacks.” What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest….

Many thanks to Dr. White for her explanations.

Here we are in the middle of madness, holiday madness that is. Of course, that means we need to remind ourselves to slow down and de-stress. Exercising is one way to de-stress. We all have different ways to do that. The important thing is to do it… and stick to your renal diet if you follow one.

To those of who you celebrate Chanukah, I wish you a happy and a healthy first night tomorrow night. We’ll be lighting the Menorah along with you. It’ll be hard not to eat the chocolate gelt (money), but you can do it.

Until next week,
Keep living your life!

Feed Me

Over the years, I’ve seen advertisements for food preparation services. You know the ones that cook your meals and deliver them weekly. I would approach the people offering the service to see what they could do with the renal diet. That was a deal killer right there.

All right, I figured. Maybe what I should be doing is finding a chef who is willing to work with kidney patients rather than ask existing food preparation services to accommodate just me. I even had one chef who agreed that this is a valuable service and something she wanted to do. I was excited. Then she simply stopped emailing and answering calls. That was a couple of years ago.

I sort of gave up… until I ran into an advertisement for Clarence’s food service. I figured it was worth it to try again and called him. It was.

I explained to Clarence that I don’t permit advertising on my blog, but I would like other Chronic Kidney Disease patients to see how they can make use of food preparation services such as his. He was kind enough to write this guest blog for us. I’m hoping that this inspires you to approach a chef in your area to ask him/her if he/she is willing to provide such a service. Of course, not all of us want to have someone else prepare our meals or want to spend the money to do so, so this is a blog for that portion of readers who do.

Meal Planning for Those with Kidney Disease.
Clarence Ferguson, RTSM, CMTA, NT

Understanding your kidney disease, or renal disease, is the first step in taking control of your health. While I am not a doctor, I have aligned myself with those whose specialize in CKD so that I can adjust meals accordingly. When you have kidney disease, your kidneys are no longer able to remove waste effectively from your body or to balance your fluids. The buildup of wastes can change the chemistry of your body causing some symptoms that you can feel, and others that you don’t.

With kidney diseases, the first symptoms you may have are ones that you won’t feel but that will show up in tests that your doctor orders. Common problems are high blood pressure, anemia and weakening bones. It is important to find a kidney doctor (also called a nephrologist). And once you have your doctor’s recommendation that’s where we come in and prepare your meal according to his or her recommendations.

Okay Clarence, we know that but how do we navigate healthy eating?

Here are some suggestions for you and what I prepare for clients who struggle with CKD.

Make sure these snacks are readily available:
1. Fruit: apples, grapes, tangerines or strawberries; dried cranberries or blueberries; or packaged fruit cups with diced     peaches, pears, pineapple, mandarin oranges or mixed fruit. Make sure they are organic.
2. Low- or no-sodium microwave popcorn.
3. Low-sodium crackers, pita chips or unsalted pretzels.
4. Pouches of tuna or chicken and a side of Vegainse (a dairy free option for mayonnaise).
5. Kidney-friendly nutrition bars or liquid supplements, such as the ones from ID life, since they meet these guidelines.

What we do at Fit Body Foods
1. Compare brands. Sodium and potassium levels can vary significantly from one brand to another.
2. Look for low-sodium labels on packaging. Stock up on the lowest sodium broths, stocks and condiments.
3. Choose fresh vegetables, or frozen or canned veggies with no added salt or sodium.
4. Use only 1/4 as much of the tomato sauce and canned tomatoes that a recipe calls for to limit potassium and sodium.
5. Don’t use canned fish or chicken with added salt. All fish is fresh, so we can control the sodium levels by rinsing to reduce the sodium. Try to limit use of canned goods in general.
6. Avoid baking and pancake mixes that have salt and baking powder added. Instead, make a kidney-friendly recipe from scratch.
7. Use sweet pickles instead of dill pickles and check for added salt.
8. Check cold and instant hot cereals for sodium amounts. Although oatmeal contains more phosphorus than some cereals, it may be okay one to two times a week if phosphorus is well-controlled.
9. Check the ingredients in vinegar. Some vinegars, such as seasoned rice vinegar, contain added salt and sugar.
10. Avoid store-bought sauces and gravies that have mystery ingredients in them. Make our own instead from real-food ingredients.
11. Use homemade soup recipes, such as Rotisserie Chicken Noodle Soup, instead of pre-made or canned soups. Some soups contain more than 800 mg sodium per serving.
12. Low – and reduced – sodium broth is great for use in cooking. We save the homemade broth from stewed or boiled chicken or beef.
13. Don’t trade sodium for potassium. Some products replace salt with potassium chloride.
14. Limit nuts, seeds and chocolate as they are high in potassium and phosphorus.

We prepare food weekly and deliver to our clients on Sundays. We take the worry out of meal prep, our meals start at $7.99 a meal, and we can accommodate most palates. We can be reached for orders at: info@coachclarence.com.

Below is a sample recipe:
Cucumber-Carrot Salad
Diet types: CKD non-dialysis, Dialysis, Diabetes
Portions: 4
Serving size: 1/2 cup
Ingredients:
1/4 cup unseasoned rice vinegar
1 teaspoon sugar
1/2 teaspoon olive oil
1/8 teaspoon black pepper
1/2 cucumber
1 cup carrots
2 tablespoons green onion
2 tablespoons red bell pepper
1/2 teaspoon Mrs. Dash® Italian Medley seasoning blend

Notice there is nothing new here. We all know this information. What is appealing is having someone else, someone who understands our diet limitations, buy the food and prepare it for our meals. I explained to Clarence that our food needs as far as electrolytes change with each blood test and he agreed that it’s important to eat according to your numbers. That’s something he’s very willing to pay attention to. Should this interest you, why not approach a professional in your area to see if they can also provide such a service?Big news! SlowItDownCKD 2011 is now available on Amazon.com in both print and digital (and needs reviews: hint). SlowItDownCKD 2012 will not be far behind. These are the first and second parts of the reformatted, larger print, more comprehensively indexed The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, (available only until SlowItDownCKD 2012 is published).

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!

Two Masters

A friend of mine, the one I mentioned when I wrote about renal sally ports, recently has had a relapse. Yep, he neglected to take his medications at the proper times. That can cause havoc for mental illness, especially bipolar disorder. It got me to thinking. What if my friend had Chronic Kidney Disease AND bipolar disease? How could he handle both diagnoses at the same time?

Let’s start at the beginning. There are certain drugs I take in the hopes of delaying dialysis as long as possible. One of those is the ACE Inhibitor I’d been taking for hypertension for about two decades before I was even diagnosed with CKD. Here’s the definition from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “ACE Inhibitor: A blood pressure medication that lowers protein in the urine if you have CKD.”

It works by both relaxing the blood vessels and reducing the blood volume. This, in turn, lowers your blood pressure which, in turn, lowers your heart’s oxygen needs. And the problem for my friend would be? Well, maybe just remembering to take the medication each day.

However, according to MedicineNet.com at http://www.medicinenet.com/ace_inhibitors/page2.htm,
The most common side effects are:
• Cough
• Elevated blood potassium levels
• Low blood pressure
• Dizziness
• Headache
• Drowsiness
• Weakness
• Abnormal taste (metallic or salty taste)
• Rash
• Chest pain
• Increased uric acid levels
• Sun sensitivity
• Increased BUN and creatinine levels

Did you notice increased uric acid levels, and increased BUN and creatinine levels? This could be a dicey medication for CKD patients if they did not heed their doctor’s advice once (s)he has evaluated the patient’s labs. That’s the problem here: not having the ability to be a compliant patient during a bipolar episode.

I was also prescribed a drug for cholesterol, a statin. This drug inhibits (the word of the day) an enzyme in the liver that produces lipids. As reported in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:
According to Dr. Dr. Robert Provenzano, chief of nephrology at St. John Hospital and Medical Center in Detroit, “…LDL, bad cholesterol, directly impacts acceleration of Chronic Kidney Disease.” One of the possible side effects is of this drug is Type 2 Diabetes. All I can say about that is thank goodness these side effects are not the norm.

Here’s the problem: statins have to be taken at night. That’s when the body produces cholesterol. Again, can my friend be compliant during an episode? What about the drugs he already takes? Are they going to somehow interfere with these common drugs for CKD?

Lithium is the usual drug for him. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:
“There were two Plenary Sessions I attended at the Southwest Nephrology Conference I attended last weekend. It was at the second one, ‘Psychiatric issues in kidney patients’ that I suddenly sprang to attention. What was this man saying? Something about lithium doubling the risk for Chronic Kidney Disease? And I was off… how many psychiatric patients knew that fact? How many of their caretakers knew that just in case the patient was not responsible at the time of treatment? What about children? Did their parents know? Was a screening for CKD performed BEFORE lithium was prescribed?”

Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend:

“What is lithium?
Lithium is a common medicine used to help calm mood for treating people with mental disorders. Since such disorders need lifelong treatment, long-term use of lithium may be harmful to organs, such as the kidneys.

How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

I keep reminding myself that the word “may” appears over and over again. Yet, since my friend either wasn’t taking his medication at all or not taking it as prescribed, it wasn’t working…and he is still at risk for CKD.

I found this tidbit on Drugs.com at https://www.drugs.com/interactions-check.php?drug_list=1477-0,1489-0, ACE Inhibitors: “…may increase the blood levels and effects of lithium. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications.” Wait. So you need an ACE Inhibitor if you have CKD, but it can interfere with the lithium you take if you’re bi-polar. And statins? While I couldn’t find any interactions, I did find the caution that there may be some and to check with your doctor. I am aware he takes an anti-depressant, but in researching, have discovered there are many that are safe to take with CKD.

My friend usually goes to his medical appointments, but he neglects to mention certain symptoms and sometimes has trouble telling reality from non-reality. Does he know whether his doctor has warned him about the higher risk of CKD or not? Does he know that he may develop a form of diabetes from long term use of lithium? Does he know that if even one of his parents has CKD, his risk is doubled yet again?

Tomorrow is July 4th, the day the United States celebrates its independence from the tyranny of England. Where is my friend’s independence from the tyranny of his mental illness? The English and the United States have learned to peacefully share our existences (right, English readers?). Here’s hoping my friend can learn to peacefully share his existence with bipolar disorder… and CKD should he develop it. Heaven forbid.

Until next week,
Keep living your life!

Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

CKD and the VA or It’s Not Alphabet Soup at All

Today is Memorial Day in the United States. It is not a day to say Happy Memorial Day since it is a day commemorating those who gave their lives for our freedom. Lots of us have bar-b-ques or go to the park or the beach to celebrate. No problem there as long as we remember WHO we are celebrating. I promise: no political rant here, just plain appreciation of those who serve(d) us both living and dead. Personally, I am honoring my husband, my step son-in-law, and all those cousins who just never came home again.

I explained the origins of this day in SlowItDownCKD 2015 (May 25), so won’t re-explain it here. You can go to the blog and just scroll down to that month and year in the drop down menu on the right side of the page under Archives. I was surprised to read about the origins myself.

We already know that Chronic Kidney Disease will prevent you from serving your country in the military, although there are so many other ways to serve our country. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

‘The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services establishes medical standards, which, if not met, are grounds for rejection for military service. Other standards may be prescribed for a mobilization for a national emergency.

As of September 13, 2011, according to Change 1 of this Instruction, the following was included.

‘Current or history of acute (580) nephritis or chronic (582) Chronic Kidney Disease of any type.’

Until this date, Chronic Kidney Disease was not mentioned.”

You can read the entire list of The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services at http://dtic.mil/whs/directives/corres/pdf/613003p.pdf. You’ll also find information there about metabolic syndrome, high blood pressure, high cholesterol, diabetes, and pre-diabetes as conditions for non-enlistment.

This got me to thinking. What if you were had already enlisted when you developed CKD. Yes, you would be discharged as medically unfit, but could you get help as a veteran?

According to the Veterans Administration at https://www.research.va.gov/topics/Kidney_disease.cfm#research4,

“In 2012, VA and the University of Michigan began the work of creating a national kidney disease registry to monitor kidney disease among Veterans. The registry will provide accurate and timely information about the burden and trends related to kidney disease among Veterans and identify Veterans at risk for kidney disease.

VA hopes the kidney disease registry will lead to improvements in access to care, such as kidney transplants. The department also expects the registry will allow VA clinicians to better monitor and prevent kidney disease, and will reduce costs related to kidney disease.”

That’s what was hoped for five years ago. Let’s see if it really came to fruition.

Oh, this is promising and taken directly from The U.S. Department of Veterans Affairs.

“VA eKidney Clinic

The VA eKidney Clinic is now available! The eKidney Clinic offers patient education through interactive virtual classrooms where Veterans can learn how to take care of their kidneys and live a good life with kidney disease. Please visit the VA eKidney Clinic website or click on the picture below. For additional information see the eKidney Clinic Patient Information Brochure.”

The Veterans Health Administration doesn’t just provide information, although I must say I was delighted to see the offer of Social Work Services. There is also treatment available. Notice dialysis mentioned in their mission statement.

“Mission: The VHA Kidney Program’s mission is to improve the quality and consistency of healthcare services delivered to Veterans with kidney disease nationwide. The VHA Kidney Program provides kidney-related services to dialysis centers throughout VA’s medical centers. Professional guidance and services are available in the form of consultation and policies developed by VA kidney experts. These experts are dedicated to furthering the understanding of kidney disease, its impact on Veterans, and developing treatments to help patients manage disease symptoms. In addition, the VHA Kidney Program provides VA healthcare professionals with clinical care, education, research, and informatics resources to improve healthcare at local VA dialysis facilities.”

I did find it strange that there was a cravat on the Veterans Administration site that they do not necessarily endorse the VHA Kidney Program, especially since it is so helpful.

 

 

 

How involved is the VA with CKD patients? Take a look for yourself at this 2015 statistics by going to https://www.va.gov/HEALTH/services/renal/documents/Kidney_Disease_and_Dialysis_Services_Fact%20Sheet_April_2015.pdf

• All Veterans enrolled in VA are eligible for services, regardless of service connection status
• Enrolled Veterans can receive services from the VA or from community providers under the Non-VA Care Program if VA services are unavailable
• 49 VA health care facilities offer kidney disease specialty care (nephrology services)
• 96 VA facilities offer inpatient and/or outpatient dialysis; 25 centers are inpatient-only. Of the 71 VA outpatient dialysis centers, 64 are hospital based units, 2 are joint VA/DoD units, 4 are freestanding units, and one is within a community based outpatient clinic (CBOC)
• VA enrollees must be offered the option of home dialysis provided either directly by the VA or through the Non-VA Care Program
• 36 outpatient hemodialysis centers offer home dialysis care directly.
• 5 VA medical centers host kidney transplantation programs.
• VA Delivered Kidney Care (Calendar Year 2013) 13,794 Unique Veterans receiving dialysis paid for by VA; representing an annual increase of 13% since 2008. 794 Veterans received home dialysis; 55percent (434) by VA facilities and 45percent (360) under the Non-VA Care Program.
• Increasing use of telehealth services to increase Veteran access to kidney specialty care Secure messaging: 7,319 messages, Clinical video telehealth: 4,977 encounters
• VA Kidney Research (FY ’14) the research budget for the study of kidney disease has been $18.5 million per year for the past 5 years (FY ’10-FY ’14). The VA Cooperative Studies Program has supported national clinical trials addressing the best treatment of Veterans with CKD since at least 1998.

It seems to me our veterans are covered. Now if we could only make sure the rest of us stay covered no matter what bills the current administration signs into law.

Until next week,

Keep living your life!

Yet Another Possibility

Today we have yet another fitness plan? Weight loss plan? Health plan? Beauty plan? I don’t know what to call it since they offer so many different types of products. What’s that, you ask. It’s called Wakaya Perfection. It seems a great number of my friends and acquaintances have been involved in their health in this way recently. They, however, do not have Chronic Kidney Disease.

Let’s get this part out of the way: I want to go there. Yes, there. Wakaya is not only a company, but an island in the South Pacific and it.is.beautiful. Take a look at their website (wakayaperfection.com) so you can see for yourself… but, of course, that’s not what this blog is about.

The company has several different lines, so I decided to look at one product from each to evaluate them for CKD patients. Remember, should they not be viable options for CKD patients does not mean they’re not viable for those without CKD.

Let’s start with the weight loss products since that’s what’s on my mind lately. That would be the Bula SlimCap. This is what their website has to say about these caps:

“At Wakaya Perfection, when we say all natural, that is exactly what we mean. Our tropical flavors are:

• Sugar Free
• Fat Free
• Gluten Free

And Contain:

• NO Artificial Flavors, Ingredients or Colors
• NO Monosodium Glutamate (MSG)
• NO Insect or Animal Matter
• NO Growth Hormones
• NO Antibiotics
• NO Herbicides or Pesticide

That sounds great and appeals to me. Wait a minute, natural is good, but what is it that’s natural? I couldn’t find an ingredient list other than this:

• All Natural Flavors
• Active Ingredients
• Pink Fijian Ginger
• Stevia Reb-A 98%
• Quick Dissolve Blend

What makes it a quick dissolve blend? What are the all natural flavors? What are the active ingredients? Ginger is permissible for CKD patients, but how much ginger is in each cap? And as for Stevia Reb-A 98%, this is a warning I found on New Health Guide at http://www.newhealthguide.org/Stevia-Side-Effects.html: “The FDA has noted that stevia may have a negative impact on the kidneys, reproductive, cardiovascular systems or blood sugar control.” Uh-oh, they mentioned our kidneys.

Oh well, that’s only one product and maybe there’s some other source of ingredients somewhere. Hmmm, I’d want to know what’s in a product and how much of each ingredient is in it before I took it, especially with CKD on my plate.

Let’s switch to a fitness product. I stayed away from the protein shake meal replacements for the reasons I explained about such products in SlowItDownCKD 2016. This is the poignant part of that blog:

“Ladies and gentlemen, our protein intake is restricted because we have CKD. Why would we take a chance on increasing the protein in our bodies? Here’s a reminder from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease about why we need to limit our protein.

‘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.’”

Why don’t we take a look at the BulaFit Burn Capsules? Wakaya Perfection describes them as,

“A potent combination of herbs and extracts that help you manage appetite/cravings while providing sustained energy and heightened focus throughout your day. BulaFIT BURN™ is designed to help boost fat burning and provide a sense of wellbeing that reduces cravings for food and snacking.

When combined with a healthy diet and exercise, BURN capsules promote a sense of well being and energy that reduces cravings for food and snacking. BURN can also play an important role in increasing the results of ketosis and even avoiding the ‘keto flu’ that some people may experience with other ketogenic programs.”

Huh? What’s keto flu? I figured a site with the name Keto Size Me (http://ketosizeme.com/keto-flu-101-everything-need-know/) could help us out here… and they did. “The ‘keto flu’ is what we commonly call carbohydrate withdrawal symptoms. These symptoms usually occur in people who start a low carb diet that alters their hormones and causes and electrolyte imbalances.”

Wait! Electrolyte imbalances? But we work so hard with the renal diet trying to keep these within the proper range for CKD. I went back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for a little reminder about electrolytes.

“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….Too much or too little of a certain electrolyte presents different problems.”

Nope, not me. I’m keeping my electrolytes right where they belong. This is not looking good for the Chronic Kidney Disease patient. I vote no; you, of course, have to make up your own mind.

News of a local opportunity: This year’s first Path of Wellness Screening will be Saturday, June 17^th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. 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!

Just Blend In

Well, if that doesn’t beat all! Here I thought I was juicing until a reader asked me if my nephrologist knew the difference between juicing and blending. There’s something called blending? Let’s get my doctor out of the equation right away. He may or may not know the difference between the two, but I certainly didn’t.

I heard juicing and just assumed (and we all know what happens when we assume) it meant tossing 80% vegetables – since this was prescribed for fast weight loss – and 20% fruits in the blender. Hmmm, the name of the machine I used should have tipped me off that there was a difference, but it went right over my head.

Let me tell you what I learned. Juice, according to Dictionary.com at http://www.dictionary.com/browse/juicing, is: “the natural fluid, fluid content or liquid part that can be extracted from a plant or one of its parts…” while juicing is “to extract juice from.” Uh-uh, I wasn’t doing that. There was no pulp left after the vegetables and fruits were processed in the blender. It all sort of mushed – oh, all right – blended together.

The same dictionary tells me blending is: “to mix smoothly and inseparably together.” Yep, that’s what I’ve been doing. By the way, for those of you who asked to be kept posted about any weight loss, I’ve lost five pounds in ten days. To be perfectly candid, there was one day of I’m-going-to-eat-anything-I –want! mixed in there.

Another CKD Awareness Advocate wondered just what I was doing to my electrolyte limits while on this blending (I do know that’s what it is now.) diet. I arbitrarily chose a recipe from a juicing book I got online before I realized I wasn’t juicing. The recipe called for:

2 beets (what a mess to peel and chop)

2 carrots (I used the equivalent in baby ones since my hands were already starting to hurt from dealing with the beets)

8 strawberries

7 leaves of kale – which I learned is also called Tuscan cabbage

I added a cup of water since I wasn’t taking any pulp out, so the mixture was really thick.

All the ingredients were on my renal diet. So far, so good. But the question was about my daily electrolyte limits. My limits are as follows (Yours may be different since the limits usually are based upon your most current labs.):

Calories – 2100

Potassium – 3000 mg.

Phosphorous – 800 mg.

Protein – 5 ounces (141,748 mg.)

Sodium – 2000 mg.

Nutritional Data at http://nutritiondata.self.com/facts/vegetables-and-vegetable-products/2348/2 tells me I drank this much of each of those electrolytes in the total of two drinks I had of this concoction… I mean blend. The measurement is milligrams and each drink replaces a meal.

 

 

	Protein	Phosphorus
Beets	1300	33
Carrots	2700	42
Kale	2200	38
Strawberries	1000	37
Totals	7200	150

 

	Potassium	Sodium
Beets	267	1300
Carrots	359	2700
Kale	299	2200
Strawberries	233	1000
Totals	1158	7200

 

	Calories
Beets	33
Carrots	42
Kale	38
Strawberries	37
Totals	150

I had to backtrack a little to figure out that 8 baby carrots is the equivalent to 2/3 of a cup or a little over five oz. Thanks to http://www.fruitsandveggiesmorematters.org/how-much-do-i-need for the help there. They were also the source I used to verify that 8 large strawberries equal 1 cup or 8 oz.

The calculations were the hardest part of this blog for me. I rounded up whenever possible. Also, keep in mind that different sites or books may give you different approximations for the electrolytes in the different amounts of each different food you blend. I discovered that when I was researching and decided to stick with the simplest site for me to understand.

So, did I exceed my limits? I am permitted three different vegetables per day with a serving of half a cup per vegetable. There are only three vegetables in this recipe. I did go over ½ cup with the all of them, yet am under my limitations for each of the electrolytes. This is complicated. As for the fruit, I am also allowed three different ones with ½ cup limit on each. Or can I count the one cup of strawberries as two servings of today’s vegetables? Welcome to my daily conundrum.

Over all, I still have plenty of electrolytes available to me for my third meal today, which is to be a light meal of regular foods (provided they’re on my renal diet). I also have two cups of coffee a day which has its own numbers:

Protein  Phosphorus Potassium  Sodium   Calories

6000              14                232               9               4

Add those in and I still have plenty of food available to me with the electrolytes within the balance limits. The funny part is that I’m not hungry for hours after one of the blended drinks and, bam! all of a sudden I’m ravenous. I usually have the light meal mid-day so I’m not still digesting at bedtime. This is really important: on that I’m-going-to-eat-anything-I –want! day, I was hungier and hungier the more I ate and didn’t recognize when I was full.

The nice part about blending is that the fiber is still in the mixture. Fiber is necessary for a multitude of reasons when you’re a CKD patient. DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/fiber-in-the-kidney-diet/e/5320 lists those reasons for us:

Benefits of fiber

Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

• Keeps GI (gastrointestinal) function healthy
• Adds bulk to stool to prevent constipation
• Prevents diverticulosis (pockets inside the colon)
• Helps increase water in stool for easier bowel movements
• Promotes regularity
• Prevents hemorrhoids
• Helps control blood sugar and cholesterol

Our fourth anniversary is Thursday. We have had numerous health problems to deal with since that date, BUT we’ve also had numerous opportunities for fun…and we’ve taken each one. Did I ever tell you we had the ceremony at 4 p.m. in our backyard and the reception at 6 p.m. in order to help us remember the date? 4/6 = April 6^th. Get it?

Anyway, any help offered to make the blending and a light meal work on Saturday when we’ll be celebrating by attending the Phoenix Film Festival (http://www.phoenixfilmfestival.com/) all day and night will be gratefully accepted. Bring your copy of one of my books. I’ll gladly sign it for you.

Until next week,

Keep living your life!

Women and Water (Men, too)

Welcome to March: National Kidney Month and Women’s History Month. I’m going to fudge a bit on the ‘History’ part of that as I did last month with Black History Month. I don’t often have guest bloggers, but this month will feature two women as guest bloggers in honor of Women’s History Month. The first is Jessica Walter, who sent me the following email last month:

Hi There,

I am a freelance health and food writer, I have teamed up with a small senior lifestyle advice site, I worked with them to develop a complete guide on how to eat better and be healthier from a dietary point of view. This includes detailed information on why being hydrated is so important. … you can check out the article here:

https://www.senioradvisor.com/ blog/2017/02/7-tips-on- developing-better-eating- habits-in-your-senior-years/.

I liked what Jessica had to say and how easily it could be adapted not only for senior Chronic Kidney Disease patients, but all Chronic Kidney Disease patients.

In addition, she sent me this short article about hydration and CKD. It’s easy to read and has some information we constantly need to be reminded of.

Staying Hydrated When You Have Chronic Kidney Disease

We all know that drinking water is important for our health, and monitoring fluid intake is critical for those with chronic kidney disease. Too much water can be problematic, but so can too little. Dehydration can be serious for those with chronic kidney disease. If you are suffering from vomiting, diarrhea, fever, or diabetes, or if you urinate frequently, you may become dehydrated because you are losing more fluid than you are taking in. For those without chronic kidney disease, the solution is to increase the intake of water until the body is sufficiently hydrated.

Since dehydration can decrease blood flow to the kidneys, and as fluid intake must be controlled in patients with chronic kidney disease, it’s important to closely monitor their fluid intake and loss in these circumstances.

Recognizing The Signs

The first step is to recognize the physical signs of dehydration. You may have a dry mouth or dry eyes, heart palpitations, muscle cramps, lightheadedness or fainting, nausea, or vomiting. You may notice a decrease in your urine output. Weight loss of more than a  pound or two over a few days can also be an indicator of dehydration. If you are taking ACE inhibitors and ARBs, such as lisinopril, enalapril, valsartan, or losartan, or water pills or diuretics, these medications can harm your kidneys if you become dehydrated. It is doubly important to be aware of signs of dehydration if you are on any of these medications.

Steps to Take

To rehydrate your body, start by increasing your intake of water and ensure that you are eating plenty of fruits and vegetables. (Me here: remember to stay within your renal diet guidelines for fruits, vegetables, and fluids.)If you cannot keep water down, or if increased consumption doesn’t alleviate the signs of dehydration, contact your health care provider  immediately.

They may also recommend a different fluid than plain water since electrolytes and minerals can also be reduced if you are dehydrated, but you may still need to watch your intake of potassium, phosphorus, protein, and sodium. Your doctor may recommend an oral rehydration solution that will restore your body to a proper level of hydration. If you have a fluid restriction because you are on dialysis, you should consult your healthcare provider if you have issues with or questions about hydration. Taking in or retaining too much fluid when you have these restrictions can lead to serious complications, including headaches, swelling, high blood pressure and even stroke. Carefully monitoring your fluid intake and watching for signs of dehydration will help you to avoid the consequences of dehydration.

I’ve blogged many times over the last six years about hydration. I’m enjoying reading this important material from another’s point of view. I’m sorry Jessica’s grandmother had to suffer this, but I’m also glad Jessica chose to share her writing about it with us.

 

This June, 2010, article included in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 furthers explains:

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

The CDC also offers advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

• Drink more water than usual and don’t wait until you’re thirsty to drink.
• Check on a friend or neighbor, and have someone do the same for you.
• Check the local news for health and safety updates regularly.
• Don’t use the stove or oven to cook——it will make you and your house hotter.
• Wear loose, lightweight, light-colored clothing.
• Take cool showers or baths to cool down.
• Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning

It’s clear we need to keep an eye on our hydration. While we’re doing that, keep the other eye out for SlowItDownCKD 2016 purposely available on World Kidney Day on Amazon.

Until next week,

Keep living your life!

The Three Musketeers

I was in Cuba last week with very sketchy internet, so it was not possible to post a blog. But for now, I was thinking about a friend – you know, one of those Facebook friends you never met but you feel an instant kinship with – who told me that her surgeon warned her that her recovery from the spinal fusion surgery she’d recently had would be slow because she has Chronic Kidney Disease.

CKD…bone healing. Let’s start slowly and work this one out.  First of all, what do the kidneys have to do with your bones?

I turned to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for some answers.

“Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy….Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body….Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

Whoa! Each one of those thoughts needs at least a bit more explanation. Let’s start with the jobs of the kidneys. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 has a paragraph that mentions some of them. I turned it into a list to make it more visual.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, 

help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.”

Another of those various substances in the blood they help to regulate is phosphorous. That’s where one of the connections between CKD and your bones lies. If your phosphorous is not being correctly regulated by your kidneys (since your kidneys are impaired), yes you do experience pain and broken bones, but did you notice that your body also diverts your necessary-for-bone-health calcium to regulate the other substances in your blood?

I wanted to know more about phosphorous so I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I got a chuckle from seeing that I’d quoted from my first book in explaining how phosphorous works. I’d forgotten about that.

“This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues…. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.”

Talk about multi-tasking. Let’s focus in on the calcium/phosphorous connection. Kidney Health Australia at http://kidney.org.au/cms_uploads/docs/calcium-and-phosphate-balance-fact-sheet.pdf explained this succinctly:

“When your kidney function declines, you are unable to get rid of excess phosphate. (Me here: that’s what we call phosphorous except when dealing with inorganic chemistry.)  The phosphate builds up in your body and binds to calcium, which, in turn, lowers your calcium levels. When your calcium levels get too low, glands in your neck (called the parathyroid glands) pull the extra calcium your body needs out of your bones. This can make your bones easy to break. The bound phosphate and calcium get deposited in your blood vessels. It can increase your risk of heart disease and stroke. It can also cause skin ulcers and lumps in your joints.”

So where does vitamin D come in? As was mentioned in SlowItDownCKD 2015,

“’Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.’ We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read the blogs about vitamin D?  Good!” 

It sounds like vitamin D is in charge here. Let me get some more information about that for us. Bingo: DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/vitamin-d-and-chronic-kidney-disease/e/5326 was able to help us out here.

“Vitamin D is responsible for:

• Building and maintaining strong bones
• Keeping the right level of calcium and phosphorus in the blood
• Preventing bones from becoming weak or malformed
• Preventing rickets in children and osteomalacia in adults

Too much vitamin D can be toxic….”

Hmmm, the three work together with vitamin D as their captain.

I wondered what foods would be helpful for my friend in her healing process.

“Calcium

Milk, yogurt, cheese, sardines, spinach, collard greens, kale, soybeans, black-eyed peas, white beans and foods often fortified with calcium: breakfast cereals, orange juice, soy milk, rice milk

Vitamin D

Salmon, mackerel, sardines, tuna, flounder, sole, cod

Phosphorus

Ricotta cheese, barley, soybeans, sunflower seeds, cottage cheese, lentils”

Thank you to Weill Cornell Medical College’s Women’s Health Advisor at http://www.cornellwomenshealth.com/static_local/pdf/WHA0210_BoneHealth.pdf for the above information.

But, you know, it’s never just that easy. As CKD patients, we have limits of how much protein, potassium, sodium, and – wait for it – phosphorous we can eat each day. There is no socking in all the good stuff for kidney disease patients.

I can see why my friend’s surgeon told her the recovery might be slow. Something else that keeps the bones strong is weight bearing exercise, but how can she do that right now?

Until next week,

Keep living your life!

 

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

I purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the function of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”

Until next week,

Keep living your life!

What Are You Doing for Others?

Today is Martin Luther King’s birthday. Today, more than ever, we need to heed his message. Whether you apply it to today’s bizarre political scene, your local community, your family, your co-workers doesn’t matter. What matters is the operant word: doing.

That picture and those words got me to thinking.  What AM I doing for others? And what still needs to be done?

My commitment is to spread awareness of Chronic Kidney Disease (CKD). As a patient myself, I know how important this is. As you know, CKD is a costly, lethal disease if not caught early and treated… and it’s not just older folks – like me – who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it.

We also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.

I was a private person before this CKD diagnosis so many years ago. Now, in addition to a Facebook page, LinkedIn, and twitter accounts as SlowItDownCKD, I make use of an Instagram account where I post an eye catching picture daily with the hashtag #SlowItDownCKD. This brings people to my weekly blog about CKD (the one you’re reading now) and the four books I wrote about it: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (which explains CKD) and the others – The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1; The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2; and SlowItDownCKD 2015 – which are the blogs in print for those who don’t have a computer or are not computer savvy.

Healthline is a well-respected, informative site for medical information. This past year this blog, SlowItDownCKD, was a winner in their list of The Six Best Kidney Disease Blogs. That brought the hits on my page up by the hundreds. That means hundreds more people are now aware of Chronic Kidney Disease, how it is diagnosed, how it is treated, and how to live with it.

But not everything is working as I’d hoped it would. Unfortunately, I am still not having success in having Public Service Announcements placed on television or radio. Nor have I been able to interest most general magazines or newspapers in bringing the disease to the public’s awareness.

It hasn’t totally been a wipeout there, though. Michael Garcia did interview me on The Edge Podcast and both Nutrition Action Healthletter, Center for Science in the Public Interest (the nation’s largest-circulation nutrition newsletter) and New York State United Teachers (membership 600,000) ‘It’s What We Do’ profiled my work spreading CKD Awareness. Profiling my work, interviewing me, mentioning the blog all bring awareness of Chronic Kidney Disease to the public. Awareness leads to testing. Testing leads to diagnosing. Diagnosing leads to treatment. Treatment leads to saving lives. This is why I do what I can to spread awareness of Chronic Kidney Disease.

What about you? Can you speak about CKD with your family? Your friends? Your co-workers? Your brothers and sisters in whichever religion you follow? What about your neighbors? I was surprised and delighted at the number of non CKD friends and neighbors who follow the blog. When I asked why they did, they responded, “I have a friend….” We may all have a friend who may have CKD, whether that friend has told us yet or not.

There are more formal methods of spreading this awareness if that interests you. The National Kidney Foundation has an Advocacy Network.

“A NKF Advocate is someone who has been affected by kidney disease, donation or transplant and who wants to empower and educate others. These include people with kidney disease, dialysis patients, transplant recipients, living donors, donor family members, caregivers, friends and family members.

Advocacy plays an integral role in our mission. You can make a significant difference in the lives of kidney patients by representing the National Kidney Foundation. We give you the tools you need to make your voice heard.”

You can read more about this program at https://www.kidney.org/node/17759 or you can call 1.800.622.9010 for more information.

The American Kidney Fund also has an advocacy program, but it’s a bit different.

“There is strength in numbers. More than 5,100 passionate patients, friends, loved ones and kidney care professionals in our Advocacy Network are making a huge difference on Capitol Hill and in their own communities. Together, we are fighting for policies that improve care for patients, protect patients’ access to health insurance and increase funding for kidney research. As advocates, we play a key role in educating elected officials and our communities about the impact of kidney disease.”

You can register for this network online at http://www.kidneyfund.org/advocacy/advocate-for-kidney-patients/advocacy-network/

Obviously, I’m serious about doing that which will spread awareness of CKD. You can take a gander at my website, www.gail-raegarwood.com, to see if that sparks any ideas for you as to how you can start doing something about spreading awareness of CKD, too. I urge you to do whatever you can, wherever you can, and whenever you can.

Until next week,

Keep living your life!

 

Starting the New Year with a Miracle

Happy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at SlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written for the lay person, not the medical community. By the way, the National Kidney Foundation also has information about CKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Chanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By sharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas station? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

I just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.

Until next week,

Keep living your life!