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! 

They Go Together

Let me tell you how today’s topic came into being first. My cousin, Dan Bernard, has a podcast called Human BioSciences. He decided to interview me. I was onboard from day one. The interview was released last week. As I was listening to it, I heard myself tell the story of the nurse who noticed I had chronic kidney disease and started to tell me about her pancreas/kidney transplant. Oh, you can listen to the podcast, too, at https://humanbiosciences.com/woundcarepodcast. Anyway, she never got to finish her story because it was my turn for surgery. 

I have CKD and I had ¾ of my pancreas removed due to cancer. I was stymied. Why both of these organs? What was the connection? Why [how?] did they go together? That’s what I intend to discover today. We all know what the kidneys are… otherwise why read my blog? But what about the pancreas? 

On June 13 of this year, I wrote about the pancreas/kidney transplant and how it’s done. What I didn’t write about was how the two organs work together. That’s what we’ll find out today. 

Just in case you’re not sure what the pancreas is, MedicineNet will help us out: 

“The pancreas, which is about the size of a hand, is located in the abdomen, just behind the stomach. It is surrounded by other organs including the small intestine, liver, and spleen. [Lost my spleen, also, during the cancer surgery.] The pancreas plays a vital role in converting the food into energy. It mainly performs two functions: an exocrine function [That means the secretion it produces is released outside its source.]  that helps in digestion and an endocrine function [This means the hormone is released directly into the blood stream.] that controls blood sugar levels. Because of the deep location of the pancreas, tumors of the pancreas may be difficult to locate.  

The exocrine pancreas produces natural juices called pancreatic enzymes to break down food. These enzymes travel through the tubes or ducts to reach the duodenum. [That’s the part of the small intestine located below the stomach.] The pancreas makes about eight ounces of digestive juices filled with enzymes every day. The different enzymes are as follows:  

Lipase: Along with bile, these enzymes break down fats. Poor absorption of fats leads to diarrhea and fatty bowel movements.  

Protease: It breaks down proteins and builds immunity against the bacteria and yeast present in the intestine. Poor absorption of proteins can cause allergies.  

Amylase: It helps to break down starch into sugar, which is then converted to energy to meet the body’s demand. Undigested carbohydrates can cause diarrhea.  

Unlike enzymes, hormones are released directly into the bloodstream. Pancreatic hormones include:  

Insulin: This hormone is produced in the beta cells of the pancreas and helps the body to use sugar as the energy source. Lack of insulin can increase blood sugar levels in the blood and cause serious diseases such as diabetes.  

Glucagon: Alpha cells produce the hormone glucagon. If blood sugar gets too low, glucagon helps to increase it by sending a message to the liver to release the stored sugar.  

Amylin: A hormone called amylin is made in the beta cells of the pancreas. This helps in controlling our appetite (eating behavior).”  

You’ll find the same sort of explanations in my newest book, Cancer Dancer.  [I never mentioned the book is free on Kindle Unlimited, did I?] That’s a pretty thorough explanation of the pancreas. Now let’s see if we can figure out the connection between the pancreas and the kidneys.   

MedlinePlus succinctly provided the answer: 

“Uncontrolled diabetes causes damage to many tissues of the body including the kidneys. Kidney damage caused by diabetes most often involves thickening and hardening of the internal kidney structures. Strict blood glucose control may delay the progression of kidney disease in type 1 and type 2 diabetics.” 

Aha! Diabetes is caused by resistance to the insulin produced by the pancreas or the pancreas not producing insulin. If the insides of your kidneys harden or thicken, you’re simply not getting your blood as clean as it could be. 

Whoa! While I’ve been paying attention to controlling my blood sugar, I have to admit it hasn’t been strict control. You know, it’s a special occasion or I think “just once,” and so indulge in carbs. Guess I’ll have to stop that now that I know better. You, too? 

Talking about carbohydrates, my diabetes/kidney dietitian mentioned a new [to me] product: Magic Spoon. The cereal has zero sugar, 5 grams of net carbs and 13 of protein. It’s both grain and gluten free. Unfortunately, I am not a fan. However, you might be. As best as I can figure out from their website, you can choose your own flavors for variety packs. They have some interesting flavors: fruity, peanut butter, camp classics, cocoa, frosted, cinnamon roll, blueberry muffin, and maple waffle. Here’s what the company has to say for itself: 

“Hi, we’re Greg and Gabi, co-founders of Magic Spoon. 

We’ve been friends for ten years: met at college, lived together, even started a previous business together (you could call us ‘cereal’ entrepreneurs…). We both grew up eating cereal every morning for breakfast, binging on the sugary crunch of the classic brands and then crashing from the empty carbs in the afternoon when we were supposed to be at our most productive. 

Now that we’re adults, we’ve searched for years for a cereal that has the same addictive quality as those sugar/corn bombs but actually fuels us for a healthy day. We’ve turned up nothing. 

Plus, as we learned more about the cereal industry, we were shocked by the true scope of the problem. The average American eats 100 bowls of cereal a year (this even includes people who don’t eat a single bowl!), and kids are one of the largest consumers. Yet almost every version in the aisle is stuck in that old paradigm of grains, empty carbs, and sugar. 

We experimented for over a year to create a cereal inspired by the flavors and nostalgia of Saturday-morning-cartoon cereal but upgraded for a 21st-century consumer. A guilt-free treat that tastes like you remember and you can eat at any time of day. 

That’s what Magic Spoon is all about—we hope you enjoy!” 

Until next week, 

Keep living your life! 

Nailed It!

Every so often, my friend Geo asks pertinent questions or tells me about something he’s read. This week he told me about an article he’d read on nail fungus and CKD. My initial reaction was to wonder what nail fungus could possibly have to do with chronic kidney disease. Of course, what followed was my determination to find out. 

Let’s start with nail fungus. I found the Mayo Clinic has a good explanation: 

“Nail fungus is a common condition that begins as a white or yellow spot under the tip of your fingernail or toenail. As the fungal infection goes deeper, nail fungus may cause your nail to discolor, thicken and crumble at the edge. It can affect several nails. 

If your condition is mild and not bothering you, you may not need treatment. If your nail fungus is painful and has caused thickened nails, self-care steps and medications may help. But even if treatment is successful, nail fungus often comes back. 

Nail fungus is also called onychomycosis (on-ih-koh-my-KOH-sis). When fungus infects the areas between your toes and the skin of your feet, it’s called athlete’s foot (tinea pedis).” 

I think we need one more thing before we see how CKD is involved and that is the definition of fungus. I was surprised to discover that the National Cancer Institute had the most easily understood definition of the term: 

“A plant-like organism that does not make chlorophyll. Mushrooms, yeasts, and molds are examples. The plural is fungi.” 

The thought of something like that growing on my nails is more than a little creepy. What’s even creepier is that CKD might have something to do with it. 

I found this on ResearchGate: 

“Abnormalities of the skin and its appendage are commonly encountered in renal patients…. Other frequently observed onychomycopathies in CKD patients include onychomycosis, onycholysis, leukonychia, clubbing, and brittle nails. Onychomycosis, a commonly encountered fungal infection, also often manifests among CKD patients. Nail diseases in patients on maintenance hemodialysis are common and may affect up to 71.4 % of these patients. There is no direct relation between the dose and duration of hemodialysis and the increased prevalence of nail abnormalities. A significant incidence of nail changes among renal transplant recipients has also been described with a reported overall frequency of 56.6 %. Nail pathology increases with age and correlates with longer duration of immunosuppression. The most commonly encountered nail changes in renal transplant recipients include leukonychia, absence of lunula, onychomycosis, longitudinal ridging, and Muehrcke lines.” 

Now before you start wondering why I’m taxing you with all these medical terms, the only one you need to deal with is “onychomycosis,” which, as the Mayo Clinic has already explained, is also called nail fungus. 

Seems pretty clear to me so far… except for what CKD has to do with it. The Global Nail Fungus Organization remedied that problem: 

“CKD patients may experience abnormal fingernail and toenail changes due to malnutrition. Nails are made up of protein, which people suffering from chronic kidney disease are likely lacking of in their diet. As damaged kidneys lose their ability to excrete wastes and toxins out of the body, they cause sufferers to lose vitamins and other nutrition, all of which are necessary for healthy growth of nails. They are also at high risk of zinc deficiency, which is related to nail changes. 

Therefore, CKD sufferers often experience abnormal nail changes, which include getting brittle nails, pitted nails, yellow or white coloring, and white streaks or spots on the nails. The most common nail disorders people with CKD often get are absent lunula (the crescent-shaped white area of the bed of a nail) and half and half nails (half white and half red, pink or brown color appearance of the nail with an apparent demarcation line). 

Since abnormal changes to the nail are consequences of having chronic kidney disease, even with known nail treatments, the nails are unlikely to go back to normal unless the kidney disease is treated successfully. 

Onychomycosis in Patients with Chronic Renal Failure 

Patients with chronic renal failure may also experience onychomycosis, or nail fungi infection. In one study aiming to assess the frequency of onychomycosis in CKD patients undergoing hemodialysis (the process of filtering wastes and other toxins from the body using a machine), it found out that the frequency of nail fungi infection among the 100 patients was 39%. The risk of acquiring the onychomycosis went up by 1.9% for each additional year in age, with diabetic patients 88% more likely to develop the infection than non-diabetic patients. 

The study did not find the association of the development of onychomycosis with the duration of hemodialysis treatment.” 

Conversely, our nails can tip us off that we have kidney disease. Walk-In Lab explains: 

“When people have kidney disease, nitrogen waste products build up in our bodies. Your kidneys are not filtering those products out properly. This can lead to changes in the look and structure of both fingernails and toenails. It’s not the ONLY cause of change though. Malnutrition and taking some medications can also contribute…. 

There are three different types of nails to be on the lookout for when it specifically comes to chronic kidney disease. 

Beau’s lines 

The name comes from a French physician, Joseph Honore Simon Beau, who first described the condition in 1846. Beau’s lines are deep grooved lines that run horizontally from side to side on the finger or toenail…. These can be signs of acute kidney disease that interferes with the growth of the nail. They can also be signs of diabetes and vascular disease.  

Ridged nails 

The official name for this is koilonychia. These are rough looking nails with ridges that are frequently spoon-shaped and concave. In the early stages of this condition, the nails may be brittle, chipping easily. Ridged nails happen when you have iron-deficiency anemia…. These type of nails can also be a sign of heart disease or hypothyroidism.   

White streaks/spots 

The medical name for this type of nail is leukonychia, which comes from the Greek words that mean ‘white nails.’ This is when white lines or dots appear on your finger or toenails. They can be many dots on one nail or it might be one larger spot that stretches across the nail…. Injury is the largest cause of white spots, but they can also be indicative of heart disease, psoriasis and arsenic poisoning, as well as kidney disease.   

Other things to look for in nails are loosening nails, black lines, redness around the nail bed, half-and-half nails (also known as Lindsay’s nails) as they can indicate other diseases besides kidney disease. 
If you look down at your nails and see any of these patterns, check with your local healthcare provider. They may want to run tests on you to see if it’s something minor or the start of something serious.” 

Well, I’m glad Geo asked. I suspected there was a connection but hadn’t expected it to be so complex. 

Until next week, 

Keep living your life! 

Did You Say Portable?

Way back in February of last year, I wrote about the Phase 1 KidneyX competition. Now we have the Phase 1 winner. Oh, you’ve forgotten what KidneyX is? No problem. This is from the previously mentioned blog: 

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

According to USA.gov, “The U.S. Department of Health and Human Services protects the health of all Americans and provides essential human services.” The American Society of Nephrology (ASN) is self-explanatory. The two working together present a powerful front.  

This was posted on the KidneyX  Prize Winner’s site: 

“Winner: Development Of A Dialysate-Free Waterless Portable And Implantable Artificial Kidney 

Winning Submission 

We have created a portable artificial kidney device that fits into a backpack that can be used at night or at work while sitting on a nearby table. Moreover, taking advantage of the fact that the device does not need water or dialysate, we will use the same technology to create for the first time a completely implantable artificial kidney. Patients are very enthusiastic about our portable and implantable artificial kidney devices because they offer more personalized treatment than dialysis and because of the more accurate ability to control fluctuations in toxins to be removed. Importantly patients are also excited about the improvement in their quality of life because of the ability to use the device at home or at work coupled with the increased ease of treatment. In addition, for patients who chose to remain on peritoneal dialysis, our technology offers the advantage of decreasing the number of treatment fluid exchanges needed. The important advantages of our technology to patients include: 1) Since the use of the device occurs at night or during the day at home or at work, patients will no longer need to go to a dialysis clinic and will have increased mobility to travel and work; 2) The technology will provide patients with more treatment options; 2) Dialysate solutions, large R/O water tanks and large storage space for home modalities will no longer be needed decreasing the overall cost of treatment; 3) Given the potential for greater clearances and efficiency of treatment, the diet and fluid intake can be liberalized; 4) In its ultimately implantable format, patients will be entirely mobile and not require a CVC line or access; 5) Given the shortage of kidneys for transplant, patients who have dreamt for years of getting off dialysis will now be offered this opportunity. 

Submitter Bio 

Ira Kurtz, MD, FRCP, FASN, is Distinguished Professor of Medicine, Chief of the Division of Nephrology, Factor Chair, and a member of the University of California, Los Angeles (UCLA) Brain Research Institute. Dr. Kurtz is a scientific and medical advisor for US Kidney Research Corporation for the development of a portable and implantable artificial kidney. Dr. Kurtz is a graduate of the University of Toronto and completed his postgraduate training at both the University of California, San Francisco, and the National Institutes of Health. Dr. Kurtz has been a faculty member at UCLA since 1985 and is board-certified in Internal Medicine by the American Board of Internal Medicine and in Nephrology by the American Board of Nephrology. Dr. Kurtz is a Fellow of the Royal College of Physicians and Surgeons of Canada, and the American Society of Nephrology, and is listed in Southern California Super Doctors. He is a member of the American Society of Clinical Investigation, the American Physiological Society, the Biophysical Society, and the American Society of Nephrology. Dr. Kurtz has authored over 300 scientific publications, book chapters, and abstracts. He is on the editorial board of several scientific journals and is an external reviewer of major scientific publications and grants. Dr. Kurtz’s primary areas of research include ion transport-related diseases, the physiology and biophysics of molecular transport processes in the kidney and extrarenal organs, structural biology, the atomic structure of membrane proteins, and the development of an artificial kidney. 

Since I am not on dialysis, I needed some terms explained. Maybe you do, too. 

CVC line: A central venous catheter is a thin, flexible tube that is inserted into a vein, usually below the right collarbone, and guided (threaded) into a large vein above the right side of the heart called the superior vena cava. It is used to give intravenous fluids, blood transfusions, chemotherapy, and other drugs. [This definition is from the National Cancer Institute. Those following are from Merriam-Webster Dictionary.] 

Dialysate: the material that passes through the membrane in dialysis 

peritoneum: the smooth transparent serous membrane that lines the cavity of the abdomen of a mammal and is folded inward over the abdominal and pelvic viscera 

peritoneal dialysis: a procedure performed in the peritoneal cavity in which the peritoneum acts as the semipermeable membrane 

Putting myself in what I think might be the mindset of a dialysis patient, I am filled with hope at the thought of possibly making my life easier and allowing me to work again. I’d like to hear from actual dialysis patients to get your take on this new machine.’ 

But wait; there’s more. In Tina Daunt’s interview on UCLA Health, Dr. Kurtz tells us: 

“’The device we’re working on is complicated,’ Dr. Kurtz said. ‘We have four separate components in it. The first component is called the ultrafiltration module, and it filters the blood. By filtering the blood, what I mean is that it prevents the cells in the blood and proteins from getting into the rest of the device’….  

There are additional components in the device, including a nanofiltration module to prevent the excretion of sugar in the artificial urine and two custom-designed electrodeionization modules that transport various ions into the synthetic urine. One of the electrodeionization modules is specific for potassium. 

‘If your blood potassium changes by just a little bit, the electricity in your heart can just go wacko and your heart can stop,’ Dr. Kurtz said. ‘So it’s very important that we keep the potassium in the blood within a certain range.’ 

Finally, the device includes a reverse osmosis module that ensures the appropriate amount of water is excreted in the synthetic urine…. 

Dr. Kurtz estimates that his team needs another 18 months to refine the technology on the wearable artificial kidney and then will focus on the implantable artificial kidney….” 

18 months. The article was printed in January of last year. We are soooo close. 

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! 

Dialysis & Transplant Change Your Renal Diet – Part 2

Before we start, let’s acknowledge that today is Independence Day in the U.S. For those not in the U.S., it’s the day we celebrate Congress’s Declaration of Independence from England back in 1776. The Second Continental Congress had ratified our independence just two days earlier. The most usual celebration is a fireworks display accompanied by a backyard bar-b-q with friends and family. 

That’s an easy transition to writing about your kidney [renal] diet no matter if you’re a chronic kidney disease stages 1-5 patient, a dialysis patient, or a transplantee. Last week, I wrote about two of 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. Those are the electrolytes potassium and phosphorous. 

Last week, I neglected to define electrolyte. MedlinePlus can rectify that right now: 

“Electrolytes are minerals in your blood and other body fluids that carry an electric charge. 

Electrolytes affect how your body functions in many ways, including: 

The amount of water in your body 

The acidity of your blood (pH) 

Your muscle function 

Other important processes 

You lose electrolytes when you sweat. You must replace them by drinking fluids that contain electrolytes. Water does not contain electrolytes.” 

I can practically hear you asking what electrolytes have to do with your kidneys. I turned to verywellhealth for an explanation we can all understand: 

“Electrolyte abnormalities are very common in kidney disease states for one simple reason—it is the kidney that typically has a central role in maintaining normal levels of most electrolytes. Therefore, these abnormalities are a consequence of abnormal kidney function, rather than a cause. 

Both low and high levels of electrolytes can be seen when the kidneys malfunction….” 

Aha! So, we’ve got to keep our kidneys as healthy as possible to control our electrolytes. It is a little too late to keep our electrolytes normal if we already have CKD, are on dialysis, or have a transplant. However, there’s no reason not to try. I think I already mentioned at one point that I have hyperkalemia [high potassium] for the first time. I also have a significantly lower GFR than I’m used to. You see where I’m going with this? 

Okay, let’s get to that third ‘p’ I mentioned. It’s protein. As stage 3B, I am restricted to five ounces a day. Since I’ve never had either high or low protein on my blood tests, I wonder if I am automatically sticking to that restriction. I honestly doubt it, so I’ll have to do better. Protein is hard on the kidneys. 

It’s a good thing that the National Kidney Foundation explains why so well: 

“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.” 

Luckily for me, I’ll be seeing my nephrologist later this week and will be sure to ask him how much protein I should be having on a daily basis. Due to the diabetes, I have gained weight. Perhaps that changed the amount of protein I should be having daily. We’ll see. Then again, there’s that change in my GFR. What will that change? Of course, I won’t know the amount of protein in my urine until I see the results from the blood tests I took previous to this appointment. 

I like to know exactly what happens in my kidneys, so let’s see what too little or too much protein can do to them. The Journal of the American Society of Nephrology has an explanation that is surprisingly easy for laypeople [that’s us: non-doctors] to understand: 

“Although there has not been a full elucidation of the underlying mechanisms by which high protein intake may adversely affect kidney function, particularly in the context of CKD, existing data suggest that glomerular hyperfiltration caused by a high-protein diet may lead to an increase in albuminuria and an initial rise and subsequent decline in GFR (Figure 2). Furthermore, growing evidence suggests that high-protein diets may be associated with a number of metabolic complications that may be detrimental to kidney health.”  Figure 2 is below. 

Reminder: albuminuria and proteinuria are not the same thing. 

Let’s take a look at the protein needs for dialysis patients. I found this on DaVita’s website: 

“Excess protein waste can cause nausea, loss of appetite, vomiting, weakness, taste changes and itching…. Dialysis removes protein waste from the blood and a low protein diet is no longer needed. Unfortunately, some amino acids are removed during dialysis. A higher protein intake is needed to replace lost protein.” 

What about protein needs after a transplant? The University of Michigan was more than helpful here: 

“For the first 6-8 weeks after transplant, you will need a high protein diet to help heal. Dialysis patients will need as much or more protein following transplant than they did during dialysis. Chronic Kidney Disease (CKD) patients not on dialysis will definitely require more protein after transplant. Protein is important for healing and strength. High doses of prednisone can cause muscle breakdown, making adequate protein intake even more crucial. Six to 8 weeks after the transplant, you should reduce protein intake to 6 to 8 ounces daily.” 

I thought we needed a little humor here, so I’ve included Australia’s Betterhealth list of protein foods: 

“lean meats – beef, lamb, veal, pork, kangaroo 

poultry – chicken, turkey, duck, emu, goose, bush birds 

fish and seafood – fish, prawns, crab, lobster, mussels, oysters, scallops, clams 

eggs 

dairy products – milk, yoghurt (especially Greek yoghurt), cheese (especially cottage cheese) 

nuts (including nut pastes) and seeds – almonds, pine nuts, walnuts, macadamias, hazelnuts, cashews, pumpkin seeds, sesame seeds, sunflower seeds 

legumes and beans – all beans, lentils, chickpeas, split peas, tofu.” 

There’s so much difference in the dietary needs amongst CKD, dialysis, and transplant patients… and we haven’t even dealt with the ‘s’ in the ‘3 p’s and 1 s.’ That’s sodium or, as we usually refer to it, salt although there is a difference between the two. That will be part 3 in this series. 

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 1

I’ve spent so much time dwelling on how to combine the renal/diabetes diet that I’ve overlooked other big dietary changes for those of us who have chronic kidney disease. Several of my fellow CKD awareness advocates have had transplants. Some others are on dialysis. I am stage 3B. We all need to follow a renal diet, but they are not the same ones. I’m a little cautious about sharing the different diets since I know so little about them, but somebody’s got to start somewhere with the differences. It might as well be me. 

I’ll start with the electrolytes I know about from my diet. Potassium is something I need to limit to about 2,000 mg. daily. According to the Collins Dictionary of Medicine, potassium is: 

“An important body mineral present in carefully controlled concentration. Potassium is necessary for normal heart rhythm, for the regulation of the body’s water balance and for the conduction of nerve impulses and the contraction of muscles.”   

If you’re on dialysis, it’s recommended you eat no more than 2,500 mg. daily, although some people may go as high as 3,000 mg. daily. Each person is different, so your nephrologist may urge you to keep your daily potassium at a different number. 

And as a transplantee? The goal is 2,000 mg. daily, just as it is for pre-transplant CKD patients. Potassium can be problematic for those with a kidney transplant. Some of the immunosuppressive medications taken to prevent rejection of the new organ can raise their potassium level.  

For the first time ever in my 14 years as a chronic kidney disease patient I have hyperkalemia or high potassium. That means I’ve got to avoid foods high in potassium such as those on WebMD’s list: 

“Many fresh fruits and vegetables are rich in potassium: 

Bananas, oranges, cantaloupe, honeydew, apricots, grapefruit (some dried fruits, such as prunes, raisins, and dates, are also high in potassium) 

Cooked spinach 

Cooked broccoli 

Potatoes 

Sweet potatoes 

Mushrooms 

Peas 

Cucumbers 

Zucchini 

Pumpkins 

Leafy greens …

Photo by Pixabay on Pexels.com

Orange juice 

Tomato juice 

Prune juice 

Apricot juice 

Grapefruit juice 

Certain dairy products, such as milk and yogurt, are high in potassium (low-fat or fat-free is best). 

Some fish contain potassium: 

Tuna 

Halibut 

Cod 

Trout 

Rockfish 

Beans or legumes that are high in potassium include: 

Lima beans 

Pinto beans 

Kidney beans 

Soybeans 

Lentils 

Other foods that are rich in potassium include: 

Salt substitutes (read labels to check potassium levels) 

Molasses 

Nuts 

Meat and poultry 

Brown and wild rice 

Bran cereal 

Whole-wheat bread and pasta” 

There are exactly 16 items on this entire list that I don’t eat. It’s almost as if I have a potassium-based diet! Okay, changes coming… and quickly. That potassium is now listed on food labels will be helpful. 

In my first CKD book, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease, I called the dietary restrictions “the three p’s and one s.”  Let’s move on to another p, phosphorous. I am restricted to 800 mg. daily. According to verywellhealth: 

“Phosphorus is an essential mineral found in every cell of the human body. It is the second most abundant mineral next to calcium, accounting for about 1% of your total body weight. Phosphorus is one of 16 essential minerals that your body needs to function properly. 

Although the main purpose of phosphorus is to build and maintain bones and teeth, it also plays a major role in the formation of DNA and RNA (the genetic building blocks of the body). Doing so helps ensure that cells and tissues are properly maintained, repaired, and replaced as they age. 

Phosphorus also plays a key role in metabolism (the conversion of calories and oxygen to energy), muscle contraction, heart rhythm, and the transmission of nerve signals. Phosphorus is considered a macromineral (along with calcium, sodium, magnesium, potassium, chloride, and sulfur) in that you need more of it than trace minerals like iron and zinc.” 

I’m doing well at controlling my phosphorous via diet. I also look for these ingredients on food labels since phosphorous itself is not listed: 

Phosphorus additives found in foods include: 

• Dicalcium phosphate. 
• Disodium phosphate. 
• Monosodium phosphate. 
• Phosphoric acid. 
• Sodium hexameta-phosphate. 
• Trisodium phosphate. 
• Sodium tripolyphosphate. 
• Tetrasodium pyrophosphate. 

Thank you to the National Kidney Foundation for the above list. 

Let’s see how dialysis deals with phosphorous. DaVita tells us: 

“Neither hemodialysis or peritoneal dilaysis [sic] (PD) are very effective at eliminating phosphorus from the body. The amount of phosphorus removed in a dialysis treatment ranges from 250 to 1,000 mg per treatment. This number is affected by the pre-dialysis phosphorus level, the type of dialyzer and the amount of dialysis received.” 

I could not find a specific goal number for phosphorous when you are on dialysis, but most of the sites I looked at mentioned that your doctor will be watching your phosphorus levels with weekly blood tests. This is also when binders may come into play. Where else to go for a good definition of binders than Drugs.com? 

“Phosphate binders are used to decrease the absorption of phosphate from food in the digestive tract. 

They are used when there is an abnormally high blood phosphate level (hyperphosphatemia) which can be caused by impaired renal phosphate excretion or increased extracellular fluid phosphate loads. 

Phosphate binders react with phosphate to form an insoluble compound, making it unable to be absorbed from the gastrointestinal tract. When taken regularly with meals, phosphate binders lower the concentration of phosphate in serum.” 

Transplantees need to be careful since their immunosuppressant medications may raise their phosphorous levels. You’ll have to watch your diet, too. Healthline tells us some high phosphorous foods that need to be either cut out of your diet or minimized in your diet are:

• Dairy foods.
• Beans.
• Lentils.
• Nuts.
• Bran cereals.
• Oatmeal.
• Colas and other drinks with phosphate additives.
• Some bottled ice tea.

It looks like this blog will have to be a two parter, or maybe a series. You can see I anticipated that in the title of this blog. Here I am offering the most basic information about dietary changes for CKD, dialysis, and transplant and there’s an awful lot of that, basic or not. 

Until next week, 

Keep living your life! 

It’s Just Not Fair

We all know I’m a medical mess. But now, I’m a disgruntled medical mess. You see, when you take insulin, you gain weight. I have diabetes and I take insulin, so I gained weight. Healthline explains: 

“Weight gain is a normal side effect of taking insulin. Insulin helps you manage your body sugar by assisting your cells in absorbing glucose (sugar). Without insulin, the cells of your body are unable to use sugar for energy. You’ll eliminate the extra glucose in your bloodstream through your urine or have it stay in the blood, causing high blood sugar levels. 

You may experience weight loss before you start insulin therapy. The loss of sugar in your urine takes water with it, so some of this weight loss is due to water loss. 

Also, unmanaged diabetes can make you extra hungry. This can lead to eating an increased amount of food even when you start insulin therapy. And when you start insulin therapy and begin getting your blood sugar under control, the glucose in your body is absorbed and stored. This causes weight gain if the amount you eat is more than you need for the day.” 

Okay, I was warned by my endocrinologist. I didn’t like it, but I wasn’t going to waste the life that had just been saved for me. Pancreatic cancer, remember? 

So, what is not fair? It seems there’s a new drug you can take to lose weight when you’re on insulin and are type 2 diabetes. Yay! I can’t take it. Boo! I went to The Mayo Clinic to explore this drug and discovered more than I’d expected to: 

“Some diabetes medications that help regulate blood glucose levels — including metformin (Fortamet, Glucophage, others), exenatide (Byetta), liraglutide (Victoza), albiglutide (Tarzeum), dulaglutide (Trulicity), sitagliptin (Januvia), saxagliptin (Onglyza), canagliflozin (Invokana), dapagliflozin (Farxiga), empagliflozin (Jardiance) and pramlintide (Symlin) — may promote weight loss and enable you to reduce your insulin dosage.” 

I was surprised that all of these might help with weight loss, but then I remembered I had tried several of them as a pre-diabetic and did not do well on them. It was a while ago, but nausea as a side effect sticks out in my mind. 

I decided to do a search for the latest drug that both treated type 2 diabetes and helped with weight loss. Reminder: Type 1 diabetes is when you don’t produce enough insulin and type 2 is when you are insulin resistant. Healthline also provided this information: 

“A once-weekly injectable recently approved to treat type 2 diabetes may hold major potential as a weight loss medication for people with obesity, too, a study suggests. 

Overweight or obese participants without type 2 diabetes who took the drug, called tirzepatide (sold as the diabetes drug Mounjaro), lost an average of nearly 21 percent of their body weight at the highest dose studied. Scientists presented their findings at the American Diabetes Association (ADA)’s annual meeting in New Orleans and published the study in The New England Journal of Medicine. 

‘Definitely, the weight loss in this study is far more what we had ever seen with other FDA-approved medications in term of the absolute amount of weight lost or percentage of weight lost,’ says Osama Hamdy, MD, PhD, an associate professor at Harvard Medical School and medical director of the obesity clinical program at the Joslin Diabetes Center in Boston…. 

Tirzepatide is the first drug in a new family of medicines that target two hormones — glucagon-like peptide-1 (GLP-1) and glucose-dependent insulinotropic polypeptide (GIP) — that are involved in maintaining healthy blood sugar levels and sending signals from the gut to the brain when people are full. 

The U.S. Food and Drug Administration (FDA) approved tirzepatide in May to help manage blood sugar in people with type 2 diabetes; the diabetes treatment is called Mounjaro. 

A head-to-head clinical trial found tirzepatide in this setting to be more effective at controlling blood sugar and spurring weight loss in type 2 diabetes patients than semaglutide (Ozempic), an injected GLP-1 receptor agonist, or two commonly used forms of insulin, according to the FDA. 

In this earlier trial, tirzepatide reduced so-called hemoglobin A1C levels, which reflect average blood sugar levels over about three months, by 0.5 percent more than semaglutide and by about 1 percent more than insulin, the FDA said. 

The 15 mg dose of tirzepatide helped type 2 diabetes patients with obesity lose 12 pounds more than semaglutide, and 27 to 29 pounds more than the two forms of insulin evaluated, the FDA noted.” 

I’m impressed, so much so that I wanted to try this new drug. My endocrinologist said no. I was disgruntled about that. She explained that I only have one quarter of my pancreas [and here I thought I had two thirds, but I hadn’t realized the pancreas also has a neck. That was removed along with the body and tail leaving me only the head during the surgery to rid me of cancer.] So? What does that have to do with anything? 

PharmarcyTimes supplied the answer: 

“The drug has not been studied in patients with a history of pancreatitis and is not indicated for use in patients with type 1 diabetes mellitus, according to Eli Lilly.” 

Oh, I see. She wasn’t willing to take the chance of damaging my remaining one quarter of my pancreas. I had never had pancreatitis but did have pancreatic cancer. This sounds like a case of don’t poke the sleeping dog. I’ll admit that I am leery of anything that may have the slightest chance of causing another cancer in my body. Therefore, I will accept my endocrinologist’s decision although life just isn’t fair in this case. But, hey, I’m alive so why complain? 

Until next week, 

Keep living your life!  

They Can be a Pair

Last week, I was back in surgery… but for a welcome reason this time. After almost three years of remission, my oncologist felt it was safe to remove my PowerPort. That’s where the harsh chemotherapy drugs entered my body. I was glad to have it gone because it was attached to my jugular vein and that made me nervous. 

While I was in pre-op, one of the nurses looked at my chart and asked me about my chronic kidney disease. After I explained, she told me she had had a pancreas/kidney transplant. I was captivated to the point of almost being disappointed when it was time for my procedure, and she hadn’t finished relating her story. So, I decided to do what I usually do. Research it myself. 

I had all sorts of theories in my head about why the two might be transplanted together. I was curious to see if they were anywhere near the truth. The Mayo Clinic was helpful here: 

“Combined kidney-pancreas transplant. Surgeons often may perform combined (simultaneous) kidney-pancreas transplants for people with diabetes who have or are at risk of kidney failure. Most pancreas transplants are done at the same time as a kidney transplant.” 

Aha! Not only does that make sense, but it was one of my theories. I have diabetes, type 2 and I have CKD. Does that make me a candidate for a pancreas/kidney transplant. Actually, since the pancreatic cancer, I only have the head of my pancreas, does that affect the situation? 

I turned to The National Kidney Foundation to find out: 

“Adults who have kidney failure because of type 1 diabetes are possible candidates for a kidney-pancreas transplant. In type 1 diabetes, the pancreas does not make enough insulin, a hormone that controls the blood sugar level in your body. The transplanted pancreas can make insulin and correct this type of diabetes. 

In order to become active on the transplant waiting list you must be: 

18 years or older 

Have both Type 1 diabetes and kidney failure 

Complete evaluation and be approved by transplant center for a kidney and pancreas transplant” 

Well, that lets me out. Kidney failure is when your kidneys don’t work well enough to keep you alive. My GFR has lowered since my cancer dance, but at 41%, the kidneys are still doing their job. Nor do I have type 1 diabetes, the kind in which your pancreas produces insufficient insulin. Although I only have the head of my pancreas remaining, I’m producing enough insulin to be insulin resistant. [Gee, how lucky for me, she thought sarcastically.] 

The nurse I spoke with said her pancreas/kidney transplant had been redone. It was originally done the “old way” that caused her problems and needed to be done the “new way.” That’s when I was wheeled to the operating room. Darn! You know my curiosity was aroused. What was the old way? The new way? What problems had been caused by doing the operation the old way? 

I came across this discussion in Pub Med Central’s Annals of Surgery, May 1999: 

“Dr. John C. McDonald (Shreveport, Louisiana): This is a detailed report on the current outcome of simultaneous kidney-pancreas transplantation, and is another fine presentation from the Memphis group… (which) has led the field in reestablishing the concept that best results are obtained when endocrine activity is delivered through the portal system and exocrine function through the GI tract. This concept was thought correct intuitively in the early efforts of transplanting the pancreas but was soon abandoned because of technical complications.” 

I needed a little assistance understanding it. I offer you the same assistance. 

Endocrine means “relating to or denoting glands which secrete hormones or other products directly into the blood.” 

 The portal system is “the system of blood vessels consisting of the portal vein with its tributaries and branches.  

Exocrine? That’s “relating to or denoting glands that secrete their products through ducts opening onto an epithelium rather than directly into the bloodstream.” 

 Epithelium means “the thin tissue forming the outer layer of a body’s surface and lining the alimentary canal and other hollow structures.” 

And, finally, the alimentary canal is “the whole passage along which food passes through the body from mouth to anus. It includes the esophagus, stomach, and intestines — that runs from the mouth to the anus.” 

I’d like to think I knew all this, but instead I need to thank the various dictionaries I consulted for these definitions. Now, the way I’m reading this discussion seems to be saying that the original method of delivering the blood containing the glandular production via the portal and the other glands’ secretions via the GI tract. Hmmm, so first that was the best way to transplant the pancreas, then it wasn’t, then it was again. Well, what came in between? Or, since this discussion is from 1999, is there a new method now?  

This is from a MedlLinePlus article published last year: 

“The person’s diseased pancreas is not removed during the operation. The donor pancreas is usually placed in the right lower part of the person’s abdomen. Blood vessels from the new pancreas are attached to the person’s blood vessels. The donor duodenum (first part of the small intestine right after the stomach) is attached to the person’s intestine or bladder.” 
 

Look at that. Blood to the blood and exocrine secretions to the epithelium. I think that’s what the above means, but I wouldn’t swear to it. Wait a minute. The nurse did say that the new pancreas had been attached to her intestine which caused her trouble. Then it was removed from the intestine to be reattached to the bladder, which rectified the situation for her. So, I guess the current method is the original. 

I hate to leave you hanging, but I feel I just don’t understand enough to explain any more. Hopefully, what I have written will be of some help to those facing, or curious about, a pancreas/kidney transplant. Although, I didn’t really write much about a kidney transplant since I’ve written about that several times already. 

Until next week, 

Keep living your life!  

How Sweet We Need It

I had an odd experience just the other day. While Bear was having a procedure on his poor back, I was in the waiting room. You know how it is; after a while, people start to talk to each other… even though we were six feet apart and masked. The woman across from me mentioned to her granddaughter that her blood sugar was crashing. I overheard and offered her some glucose tablets that I always carry with me in case my own blood glucose crashes. She was glad I offered, but told me she used Advocate Glucose SOS. She saw the perplexed look on my face and handed over a packet for me to try.

That got me to thinking. Maybe there were other products for low blood sugar [Notice I’m using glucose and sugar interchangeably.] that I knew nothing about. Time to explore.

First let me remind you that diabetes is the foremost cause of chronic kidney disease. That’s why I write about it sometimes… like today. Then I’d like to tell you about what I was using. Years ago, when I was pre-diabetic, a diabetes educator recommended CVS Health Glucose Tablets which were only $1.99 for 10 tablets. That worked for me since CVS was our local pharmacy, so I never explored anything else. They came in several flavors. I remember strawberry and orange. They were gluten, sodium, and fat free, although there was not only natural but also artificial flavoring. There were only four grams of carbohydrate and, of course, it was fast acting. Such products are only used if you can’t get to food that will raise your blood sugar.

I know, I know. You’re asking yourself what’s the big deal about low blood glucose. The NIDDK defines it for us:

“ Low blood glucose, also called low blood sugar or hypoglycemia [Gail here: another synonym], occurs when the level of glucose in your blood drops below what is healthy for you. For many people with diabetes, this means a blood glucose reading lower than 70 milligrams per deciliter (mg/dL) …. Your number might be different, so check with your doctor or health care team to find out what blood glucose level is low for you.”   

So? Why is this a big deal for diabetics? Healthline explains:

“Insufficient blood sugar levels can cause a rapid heartbeat and heart palpitations. However, even if you have diabetes, you may not always have obvious symptoms of low blood sugar. This is a potentially dangerous condition called hypoglycemia unawareness. It happens when you experience low blood sugar so often that it changes your body’s response to it.

Normally, low blood sugar causes your body to release stress hormones, such as epinephrine. Epinephrine is responsible for those early warning signs, like hunger and shakiness.

When low blood sugar happens too frequently, your body may stop releasing stress hormones, called hypoglycemia-associated autonomic failure, or HAAF. That’s why it’s so important to check your blood sugar levels often.”

This is more serious than I realized. Let’s take a look at the product the lady in the waiting room used. All I got from their website is that it comes in four favors: green apple crisp, original sweet & tangy, fruit medley, and Kiwi-strawberry, and that it costs $10.99 for 6 packets. The packet itself gave me more information. What I liked is that there are “No artificial ingredients, colors, or flavors. Sodium and preservation free, caffeine and gluten free.” It has 15 grams of carbohydrate per serving, which is what is usually recommended to raise your blood glucose. Nuts! It contains tricalcium phosphate, a form of phosphorous. Some of us with CKD need to limit our phosphorous.

I want to make it clear I am not endorsing these products, just letting you know of their existence. After all, I’ve only tried the CVS product.

WebMD tells us what to do if you have low blood sugar:

“First, eat or drink 15 grams of a fast-acting carbohydrate, such as:

• Three to four glucose tablets
• One tube of glucose gel
• Four to six pieces of hard candy (not sugar-free)
• 1/2 cup fruit juice
• 1 cup skim milk
• 1/2 cup soft drink (not sugar-free)
• 1 tablespoon honey (put it under your tongue so it gets absorbed into your bloodstream faster)

Fifteen minutes after you’ve eaten a food with sugar in it, check your blood sugar again. If your blood sugar is still less than 70 mg/dL, eat another serving of one of the foods listed above. Repeat these steps until your sugar becomes normal.”

Aha! They recommend the products we’re learning about today as well as certain foods. My diabetes/CKD nutritionist likes orange juice to raise my blood glucose, but realizes I cannot always get it if I’m not home. That’s why I carry a product with me at all times. I cringe at thinking of what might happen if I didn’t have it in the car or my purse and had low blood glucose while I was driving.

Let’s look at one more product. Amazon has Rite Aid glucose gummies in assorted fruit flavors. You get 60 pectin gummies for $7.28, but each is only two grams of carbohydrate. It might be fun. They remind me of candy. They’re vegetarian, but aren’t all blood glucose products? I really don’t know, but it makes sense that they would be.

There are a myriad of low blood sugar products available. While this was a surprise to me, it allows diabetics great choice.

Why shouldn’t we ignore low blood glucose, I wondered. The American Diabetes Association had the answer… and it wasn’t pretty.

“If the blood sugar glucose continues to drop, the brain does not get enough glucose and stops functioning as it should. This can lead to blurred vision, difficulty concentrating, confused thinking, slurred speech, numbness, and drowsiness. If blood glucose stays low for too long, starving the brain of glucose, it may lead to seizures, coma, and very rarely death.”

Okay then. Those of us with diabetes, let’s pay attention to our blood glucose levels.

Until next week,

Keep living your life!

One Thing is Not Like the Other

Here in the United States, today is Memorial Day. I’d like to take a minute to honor those who have died defending our freedom and let you know how glad I am that a certain Lieutenant Colonel (Retired) is not one of them. He’s my husband, Bear. Thank you to all the soldiers of every race, religion, and sex who have kept us safe and died in the effort. 

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. 

Now, let’s look at not dying. Diabetes is the number one cause of chronic kidney disease. While this is not news to those of us with CKD or diabetes, I do have some information that is new to me. But let’s start at the beginning. Do you remember the definition of diabetes? No? No problem. According to the CDC: 

“Diabetes is a chronic (long-lasting) health condition that affects how your body turns food into energy. 

Most of the food you eat is broken down into sugar (also called glucose) and released into your bloodstream. When your blood sugar goes up, it signals your pancreas to release insulin. Insulin acts like a key to let the blood sugar into your body’s cells for use as energy. 

If you have diabetes, your body either doesn’t make enough insulin or can’t use the insulin it makes as well as it should. When there isn’t enough insulin or cells stop responding to insulin, too much blood sugar stays in your bloodstream. Over time, that can cause serious health problems, such as heart disease, vision loss, and kidney disease.” 

The American Diabetes Association tells us that appropriate levels of blood glucose for diabetics is an A1c [a blood test showing the average of your blood glucose over the previous three months] of over 7 is diabetic. Another way of testing is a finger prick of 70-130 before meals or above 180 after meals. It’s this method of testing I want to write about today. 

Okay, so what is this ‘finger prick’? You actually make a hole in your finger to obtain a drop of blood. This hemoglobin is then tested via a blood test strip and a monitor. Here, VeryWellHealth will show you how it’s done: 

• “Turn on the glucometer. This is usually done by inserting a test strip. The glucometer screen will tell you when it’s time to put blood on the strip. 
• Use the lancing device to pierce the side of your finger, next to the fingernail (or another recommended location). This hurts less than lancing the pads of your fingers. 
• Squeeze your finger until it has produced a sufficent-size [sic] drop. 
• Place the drop of blood on the strip. 
• Blot your finger with the alcohol prep pad to stop the bleeding. 
• Wait a few moments for the glucometer to generate a reading.” 

The glucometer is the device. The test strip is what you apply your blood to. The lancet or lancing device is what pierces your skin. You can usually regulate the level of the needle on the lancet to find one that is less painful. 

One thing I’d like you to remember is that this method tests hemoglobin. 

I wasn’t a fan of pricking my fingers several times a day, especially after years of doing just that. I’ve previously explained that after losing two thirds of my pancreas to cancer, I was referred to the endocrinologist [specialist who deals with hormones of the body. Insulin is a hormone.] who suggested I might do better with insulin than I was doing with the oral medication. She also asked permission to prescribe a continuous monitoring device [CGM]. Wait. What was this? 

WebMD explains: 

“CGM measures the amount of glucose in the fluid inside your body. Different devices collect the information in different manners using tiny sensors. In some cases, the sensor is placed under the skin of your belly in a quick and painless fashion or, it can be adhered to the back of your arm. A transmitter on the sensor then sends the information to a wireless-pager-like monitor that you can clip on your belt. 

Now, remember the glucometer tests your hemoglobin for blood glucose? The fluid mentioned in discussing the CGM is not your hemoglobin, but your blood serum. That was news to me and, for some reason, I found it fascinating. Now I understand how that little, teeny needle applied to my skin – I wear the CGM on the back of my arm – can read my blood glucose. It is also a tremendous relief to feel that prick once every two weeks, instead of several times a day. Well, sometimes I do have to use the glucometer and prick my finger to make certain the CGM is calibrated. 

The monitor displays your sugar levels at 1-, 5-, 10-, or 15-minute intervals. If your sugar drops to a dangerously low level or a high preset level, the monitor will sound an alarm.” 

A few weeks ago, I promised to let you know when Cancer Dancer was published. Not only was it published last week, but Amazon deemed it the # 1 New Release in Chemotherapy. It garnered its first review that same week AND it was a five-star review! Should you decide to read it, I ask you also post a review… the same as I ask if you read one of the SlowItDownCKD series books. All the books I write are available in both digital and print formats. Let me ask you a question: Do you think I should also publish my books in hard cover? 

Enjoy your Memorial Day and remember what it celebrates. 

Until next week, 

Keep living your life! 

Bad Water

I found this on a slip of paper on my desk… in my handwriting. I wasn’t sure if this was for my #1 New Release for Chemotherapy on Amazon Cancer Dancer. But that was published last week. Then again, maybe it was the sequel (or prequel) I was thinking about for my time travel romance Portal in Time. Wait, maybe it was for a SlowItDownCKD blog. I was flummoxed. I figured I wouldn’t know unless I researched it. Sure enough, I got a hit: lead in the water and chronic kidney disease patients.

Let’s go with that. We know our kidneys love water, although your nephrologist may call it hydration. Many of us have been urged to drink 64 ounces daily. Obviously, not those on dialysis whose fluid intake is restricted. I’ve written about the fact that other liquids – like coffee or tea and anything that can melt to liquid form – count towards those 64 ounces. We know that sodas are one of the liquids we are to avoid, especially dark sodas since they contain phosphorous.  

On to that lead in the water. While this is harmful for anyone, I wondered why it is especially harmful to those with CKD. This is from a Journal of the American Society of Nephrology article published last year:

“’For individuals with heightened susceptibility to lead exposure, such as those with chronic kidney disease, there is no safe amount of lead contamination of drinking water,’ says John Danziger at Beth Israel Deaconess Medical Center in Massachusetts.

Danziger and his colleagues analysed health information from 597,968 patients with chronic kidney disease in the US who started dialysis between 2005 and 2017, as well as official data on lead concentrations in city water systems in the five years leading up to their dialysis initiation.

The team found that those who lived in cities with detectable levels of lead in the water systems had significantly lower concentrations of the oxygen-transporting protein haemoglobin in their blood before starting dialysis and during the first month of the therapy than people who lived where lead wasn’t detectable in the water. Lead is known to interfere with the ability of blood cells to produce haemoglobin, increasing the risk of anaemia.

Every 0.01 milligram per litre increase in lead concentration in the water was associated with a 0.02 gram per decilitre reduction in haemoglobin concentration in people’s blood.

The trend was observed even at lead levels below the US Environmental Protection Agency’s threshold of 0.015 milligrams per litre, which mandates regulatory action that can include public education, water treatment and lead service line replacement. ‘More comprehensive surveillance of household water is critical,’ says Danziger.”

Looks like a couple of definitions are in order. Hemoglobin [American spelling]:

“Transports oxygen in the blood via red blood cells and give the red blood cells their color”

While anemia [American spelling] is:

“A blood disease in which the number of red blood cells decreases”

Both these definitions are from my first CKD book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Although that book was published over a decade ago, the definitions haven’t changed.

Dr. Danziger mentions elsewhere in the article that he is referring to individuals with advanced CKD. What makes that even worse is that these people, those on dialysis, are the ones that need to limit their fluid intake. Do you remember that water is considered the best fluid for CKD patients?

MedPageToday has more from Dr. Danziger’s study:

“’Our findings suggest that for those with kidney disease, there is no safe amount of lead in drinking water,’ the researchers wrote. ‘While water has generally been considered a minor cause of lead toxicity, increased absorption and decreased excretion in those with kidney disease confer an exaggerated susceptibility.’

Children are at increased risk from lead exposure, and the complications of chronic kidney disease (CKD) confer similar susceptibility, the investigators explained. Metabolic conditions prevalent in CKD, such as hypocalcemia, iron deficiency, and malnutrition, increase the proportion of lead absorbed across the gastrointestinal tract. In addition, patients with CKD excrete lead less effectively, resulting in circulating levels that are much higher than in individuals with normal renal function.

In addition to its neurological, cardiovascular, and endocrine effects, lead can also cause significant hematological problems, the researchers noted. Studies have shown that lead interferes with heme biosynthesis, increases red cell destruction, and reduces gastrointestinal iron absorption, and lead toxicity has been linked with lower hemoglobin levels.”

Let’s pause for a definition some may need at this point. Hypocalcemia is too little calcium in the blood as determined by a blood test. In addition to keeping your bones and teeth strong, calcium is important to help your heart and muscles function properly. It also has a role in the clotting of your blood and your nerve function.

None of this sounds particularly good. So what do you do if you live in an area with ‘acceptable’ levels of lead in your water? The CDC suggests the following:

• “You can reduce or eliminate your exposure to lead in tap water by drinking or using only tap water that has been run through a “point-of-use”  filter certified by an independent testing organizationexternal icon to reduce or eliminate lead (NSF/ANSI standard 53 for lead removal and NSF/ANSI standard 42 for particulate removal). If you have a lead service line, use a filter for all water you use for drinking or cooking.
• You can flush your water to reduce potential exposure to lead from household lead plumbing. This is especially important when the water has been off and sitting in the pipes for more than 6 hours. Before drinking, flush your home’s pipes by running the tap, taking a shower, doing laundry, or doing a load of dishes.  Drink or cook only with water that comes out of the tap cold. Water that comes out of the tap warm or hot can have higher levels of lead. Boiling this water will not reduce the amount of lead in your water.
• You can virtually eliminate your exposure to lead in water by drinking or using only bottled water that has been certified by an independent testing organization.external icon This may not be the most cost-effective option for long-term use.”

I’d had no idea how lead in the water affects advanced CKD patients. Did you?

Until next week,

Keep living your life!

How Pets Help

We’ve all heard that pets relax us. My family was a cat family until we moved into a house. We had so many dogs in Staten Island while the girls were growing up that I’m not sure I can remember them all. Here in Arizona, it’s only been my Sweet Ms. Bella – who instantly loved Bear – and Shiloh, our present big, fluffy, white dog.

Bella

I’m particularly interested in how our pets can help us with our chronic kidney disease. This all started when I wondered out loud what I should write about for this week’s blog. Bear called out, “Pets!” He was being silly, but I liked the idea. Let’s see if we can figure this out.

Here’s what the CDC has to say about having pets:

“There are many health benefits of owning a pet. They can increase opportunities to exercise, get outside, and socialize. Regular walking or playing with pets can decrease blood pressure, cholesterol levels, and triglyceride levels.  Pets can help manage loneliness and depression by giving us companionship. Most households in the United States have at least one pet.

Studies have shown that the bond between people and their pets is linked to several health benefits, including:

• Decreased blood pressure, cholesterol levels, triglyceride levels, feelings of loneliness, anxiety, and symptoms of PTSD.
• Increased opportunities for exercise and outdoor activities; better cognitive function in older adults; and more opportunities to socialize”

Now, let’s apply that to CKD patients. Hypertension, or high blood pressure, is the second most common cause of chronic kidney disease. I turned to the National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK) to pinpoint exactly how hypertension affects your kidneys:

“High blood pressure can constrict and narrow the blood vessels, which eventually damages and weakens them throughout the body, including in the kidneys. The narrowing reduces blood flow.

If your kidneys’ blood vessels are damaged, they may no longer work properly. When this happens, the kidneys are not able to remove all wastes and extra fluid from your body. Extra fluid in the blood vessels can raise your blood pressure even more, creating a dangerous cycle, and cause more damage leading to kidney failure.”

Thank you, Shiloh, with helping to keep my blood vessels unconstricted.

What about high cholesterol levels? WebMD was able to help us out here:

“Cholesterol is a waxy substance. Your body makes it and uses it to build your cells. You also get it from many foods. But having too much cholesterol can lead to health problems….

High cholesterol can build up in arteries to increase your risk of a heart attack or stroke. It turns out that high cholesterol isn’t good for your kidneys either.”

Along with high cholesterol, high triglycerides are detrimental to your kidneys. These fats in your blood can lead to diabetes, which is the foremost cause of CKD. High triglycerides might also raise your creatinine level. You need to remember that you do need some triglyceride since they store unused calories. These are used by your body for energy. You just don’t want high triglycerides.

I had no idea my dogs and cats were helping me control my CKD. By the way, other pets can also help. It doesn’t have to be a dog or cat.

We know – fortunately or not – that exercise if important if you have CKD. This is something I explored in my first CKD book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglyceride s. The greater your triglycerides, the greater the risk of increasing your creatinine. There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising….

Keeping it simple, basically, there’s a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensify your activity….

What I didn’t know at the time is that your body becomes accustomed to a certain kind of exercise and then it isn’t as effective anymore.”

I can’t walk Shiloh since she ends up walking me, but we play. We run back and forth down the length of the long central hallway in the house. I’m certain you can figure out how to get some exercise playing with your pet if you, too, cannot walk him.

Shiloh

As an older adult, I was interested in the “better cognitive function in older adults” benefit of having a pet. As a CKD patient, I wondered if it would have any effect on CKD brain fog. The National Center For Biotechnology Information [NCBI) succinctly tells us via their work that not nothings been proven about this yet:

“Exercise interventions are likely to be beneficial based on biological plausibility and pilot trial data.”

Relaxation is also helpful if you have CKD. Stress needs to be avoided. Petting your pet or otherwise spending time with them is relaxing. Avoiding stress is one of the ways you could help delay the worsening of your chronic kidney disease.

I like to rub behind Shiloh’s ears. She loves it and it relaxes me. I also like to brush her. She leans into the brush, and I baby talk to her. Both of us benefit from this form of relaxation. Bear likes to rub her belly. Again, they both love it… and I’ll bet they’re both benefiting from this.

All on Amazon

Yes, I do think pets help in dealing with your CKD. Who couldn’t use lowered blood pressure, cholesterol, triglycerides, and a chance at extra stress relief? Do you have a pet? IF not, would you consider getting one after reading this blog?

Chronic Kidney Disease Changed My Life

Those of us with CKD always say that, don’t we? There’s so much we have to change about our lives once we’re diagnosed. That is, if you want to keep your CKD under control and possibly slow down its progression. There are the dietary changes to start. Then the medications. Don’t forget the lifestyle changes: exercise, avoid alcohol, no drinking, rest, adequate sleep. We all know the drill.

However, those are not the only things that changed in my life. I’d written ‘how to’s, literary guides, and study guides for decades. I’d taught research writing on the college level… and I’d earned an Academic Certificate in Creative Writing. Add my having been a teacher for most of my adult life and you have the basis for a CKD awareness advocate. That is how my life changed the most with my diagnosis.

The first thing I did was research for myself. I then decided that was pretty selfish. What about the people who didn’t understand what their nephrologists were saying and didn’t know how to research for themselves? Keep in mind, this was back in 2008 way before the patient based treatment movement began.

I had never published a book myself. Rather, I had always written for publishers at their request. That changed with my desire to become an advocate for CKD awareness. My thinking was, “Who’s going to publish a book about CKD for patients by a lay person?” I was and I did. What Is It and How Did I Get it? Early Stage Chronic Kidney Disease was the first book. I kept it reader friendly and explained what I hadn’t understood and what others had asked me about.

That sparked a bunch of readings at bookstores, coffee shops, and civic clubs. Then the book was mentioned in various publications, both locally and nationally. I was getting the word out! The book and its information also ignited requests from various groups for articles and/or caused those groups I’d requested to write for to change their minds and say yes. I even organized a Kidney Walk out here in Arizona. And now I serve as a patient advisor for two pharmaceutical companies.

What struck me the most was when an Indian doctor told me about how very poor his patients were and that he wanted them to have the information in the book, but they couldn’t possibly afford it. Together, we worked out a plan for me to blog a chapter a week. He would print each week’s blog and make multiple copies for his patients. Great! Now I just needed to learn how to blog.

Again, I did… with the help of my older daughter. Thank goodness she knew what she was doing because I didn’t. But it worked. I blogged as SlowItDownCKD. Once the books’ chapters were all blogged, I was having such fun being a CKD awareness advocate that I didn’t want to stop. So, I didn’t and that’s where the SlowItDownCKD book series began. Each year I would gather that year’s blogs and format them into a book. At this point, they go from 2011 to 2021.

You’re right; no once can keep covering the basics of CKD for a decade. I branched out into writing about dialysis, transplant, pediatric nephrology, and different kinds of kidney disease. There were also guest blogs from the adult children of CKD patients, transplantees, other CKD writers, and innovators.

I no longer give book talks or participate in meetings, unless they are online. Covid and cancer took my energy. But I still write and will continue to do so. I still feel it’s important that people know about this disease. So many have CKD and don’t know it. It’s sort of sad since all it takes is a blood test and a urine test to be diagnosed. I urge you to keep telling your friends and family how easy it is to make certain they’re not part of the club no one wants to join. Thanks for taking the time to read my story.

And thanks to all the readers who share the blog, talk to others about it, buy the books and share them with friends and family. Thanks to all those who urge their friends and family to get tested, who go with them to be tested, and who accompany them to be an extra ear at their nephrology appointments. And thanks to those who urge their nephrologists to remember to explain and ask questions of their patients.

According to the Centers for Disease Control and Prevention (CKD):

“More than 1 in 7, that is 15% of US adults or 37 million people, are estimated to have CKD. As many as 9 in 10 adults with CKD do not know they have CKD. About 2 in 5 adults with severe CKD do not know they have CKD.”

That is as of last year and only for the United States. I turned to MedAlertHelp to find the global statistics:

“The global estimated CKD prevalence is between 11.7% and 15.1%. To be more specific, that’s around 13.4%, or 850 million people suffering from chronic kidney disease worldwide, as per chronic kidney disease statistics worldwide for 2020….”

That was two years ago. Imagine what it is now. Surely, you can see the need for CKD awareness. You can help. Start talking about chronic kidney disease… please.

Until next week,

Keep living your life!

Food!

This was meant to be last week’s blog… until Lori Hartwell of RSNHope gifted us with a guest blog, that is. No way I was going to pass that goody up. Since I’m the scheduler as well as the writer, it was easy to change what would be posted when. But a promise is a promise. So, today we talk about chronic kidney disease cookbooks and food preparation sites. 

Photo by Lisa Fotios on Pexels.com

What better place to start than the National Kidney Foundation? They make life easy by dividing their information into different categories. This is from their website: 

“Kidney disease stages 1-4   

How a healthy diet to [sic] help prevent the progression of kidney disease.   

Dialysis   

Most patients on dialysis need to limit the amount of sodium, potassium, and phosphorus in their diets.   

Transplant   

After a kidney transplant, your diet will still be an important part of maintaining your overall health.   

Kidney Stones   

If you have had kidney stones, you may need to follow a special diet to prevent kidney stones coming back.”  

Not only do you find different diets and reasons for eating that way for each condition, but there is a ‘find a renal dietitian’ link. You can also enter a search for recipes by using the search function in the upper right-hand corner of any of their pages. 

How about the American Kidney Foundation? Have you tried their Kidney Kitchen yet? They had 657 CKD friendly recipes at last count. If you click ‘Find Recipes’ on their home page, this is what will pop up: 

“Difficulty Levels Nutrients Meal Types Dietary Requirements Collection” 

Each of these has a detailed dropdown menu. For example, should you choose ‘Meal Types,’ you’d have a choice of ‘Lunch, Dinner, Sides, Breakfast, Dessert, Snacks, Drinks, or Condiments.’ Now that’s convenient. 

The American Association of Kidney Patients (AAKP) has some delicious menus you can download. For instance,  

“Overnight Oats 

No-Crust Quiche with Leeks 

Basmati Summer Salad 

Zesty Chickpea Stew 

Hamburger New Style 

Pineapple Beef Stir-fry 

Garlic Shrimp Linguini 

Summer Chicken Breast 

Fine Fish Stew 

Pear and Ginger Upside Down Cake 

Dutch Apple Soufflé 

Tropical Mocktail” 

These recipes are from their AAKP Delicious! sixth edition. You can order recipe cards and even some select issues of earlier AAKP Delicious! editions. 

I see that dialysis centers such as DaVita and Fresenius have recipes available for those on dialysis. DaVita even has downloadable cookbooks, while Fresenius has 320 downloadable recipes. I must say my mouth is starting to water from reading all these luscious recipes. 

Let’s take a look at hold-in-your-hands cookbooks for those who are not interested in downloading and/or printing recipes. My favorite is still Renal Diet Cookbook for the Newly Diagnosed: The Complete Guide to Managing Kidney Disease and Avoiding Dialysis by Susan Zogheib MHS RD LDN, probably for her meatballs alone. Although we did enjoy the other recipes we tried from this book. This is the book description on Amazon: 

“Your new kidney-friendly diet made easy with meal plans and flavorful recipes 

When you’ve just been diagnosed with stage 1-4 chronic kidney disease, learning to follow diet restrictions can be a challenge. But your meals don’t have to be complicated or boring to support your health and slow the disease’s progression. Keep it simple and flavorful with the Renal Diet Cookbook for the Newly Diagnosed. This practical cookbook equips you with essential info, 4 weekly meal plans, and 100 easy, kidney-healthy recipes to kick-start your renal diet. 

Find out how kidney disease works, and learn how diet plays a key role in keeping you healthy and avoiding dialysis. Explore at-a-glance food charts to help you regulate nutrients like sodium, potassium, phosphorus, and protein. All of the book’s recipes include nutrition facts, and many can be made in 30 minutes or less―accommodating your busy schedule and helping keep your kidney-friendly diet stress-free. 

The Renal Diet Cookbook for the Newly Diagnosed includes: 

100+ Satisfying recipes―Enjoy Buckwheat Pancakes, Creamy Broccoli Soup, Lemon Garlic Halibut, Meatloaf with Mushroom Gravy, Strawberry Pie, and much more. 

4 Weekly meal plans―Get started with four weeks of daily menus, complete with shopping lists, snack suggestions, and nutrition facts for every recipe. 

5 Steps to a renal diet―Take your new diet one step at a time in five practical stages, including specific guidance for reading food labels and controlling portions.” 

I thought a more well-known author might appeal to those of you who like already having heard about the author: 
 

“The Cooking Doc’s Kidney-Healthy Cooking: A Modern 10-Step Guide to Preventing and Managing Kidney Disease by Dr. Blake Shusterman 

Dr. Blake Shusterman is a board certified nephrologist (kidney doctor) and creator of the YouTube cooking show ‘The Cooking Doc.’ 

In this book he combines his medical knowledge, real world patient care experience and his passion for delicious food to create an easy to follow 10-step guide for preventing and managing kidney disease and a collection of meticulously tested recipes that are accessible and home cook friendly. 

If you or your family members are searching for the best dietary recommendations to manage and prevent kidney disease, this book can help set you on the right path no matter where you are in your journey. A combination of concrete health tips, scientific knowledge, inspirational stories, charts, and beautiful recipes and pictures, this book can help you understand the dietary needs for each stage of kidney disease and make you a better cook. From tweaked classics, such as Vegan Bolognese and Macaroni & Cheese, to modern and diverse fare such as Thai Shrimp Salad and Chicken Farro bowls, this book gives you more than 50 flavor packed, low sodium recipes alongside expert nutritional analysis, pro-tip sidebars, and cooking tips and techniques. 

The 10-steps: 

1. Understand Your Kidneys 

2. Choose Your Beverages Wisely 

3. Uncover Hidden Salt and #ChangeYourBuds 

4. Embrace Plant-Based Eating 

5. Get Potassium Right 

6. Avoid High Protein Pitfalls 

7. Discover Alkaline-Rich Foods 

8. Identify and Eliminate Sneaky Phosphorus 

9. Integrate the DASH, Mediterranean and Diabetic Diets into your Routine 

10. Keep an Open Mind if you Start Dialysis 

It must be lunchtime by now. I’m eager to get in the kitchen with all these recipe sources. 

Until next week, 

Keep living your life! 

Surprise!

Last week, I mentioned that this week’s blog would be about chronic kidney disease cookbooks and food preparation blogs. That’s what I’d planned at the time. But then a guest blog appeared in my mailbox. 

Lori Hartwell, the author, is one of the first people I met when I decided I wanted to become a CKD awareness advocate. She was kind enough to publish several of my articles. Recently, we met again since we were both working on the same zoom project. We talked about swapping guest blogs… and then life got in the way, as it usually does. Being a person of her word, she didn’t forget. I’ll turn this blog over to Lori now. 

***** 

Kidney Disease Diagnosis: Help is Out There 

By Lori Hartwell 

I’ve lived with kidney disease since the age of 2, back when the medical world was first learning how to treat the disease. I was not expected to live. Dialysis was in its infancy stages back in 1968, and so was I. The medical community became my world. I earned my education as a patient, while spending so much of my time in hospitals and in being the first to try a new treatment. It was a lonely start in life as I missed many childhood experiences. I spent all my teenager years on dialysis.   

Years later, after beating all odds, I started the Renal Support Network (RSN). I did it because I didn’t want others with kidney disease to feel as lonely as I once did.  I wanted to let them know if they become knowledgeable about their illness, proactive in their care they will realize there is lots of hope! 

In 1993 I started RSN as a support network for others, like myself, who live with chronic kidney disease. Peer support is important to learn how to deal with all the emotions and to navigate this illness – “One friend can make the difference.” We have expanded our programs to help people have hope and to be proactive in their care.   

As RSN’s President and Founder, it is my goal to give people living with chronic kidney disease (CKD) tools to take control of the course and management of this life-threatening illness. It’s hard to believe through our patient engagement programs we have grown to reach millions of people.  

It is important to be aware of the epidemic of kidney disease. The Center for Disease Control states that more than 15% of the adult population in the United States live with chronic kidney disease (CKD). It’s possible to have kidney disease and not know. Don’t be afraid to get tested. Kidney function can be maintained, and the progression of the disease can be slowed down if caught in the early stages. Don’t be afraid to get tested; it is a simple blood test. An ounce of prevention is worth a pound of cure.     

It is also believed that people with CKD tend to have higher levels of anxiety and depression than others. They often feel isolated because of their outward appearances which make them different than their peers. They also have different priorities in life. When others are thinking about “the big game” or which nail salon offers the best manicure, people with CKD are struggling to understand the disease and learn how to live a full life despite the fact that they have CKD.   

Help is out there! Having even one friend can really make a difference. Connect with the Renal Support Network where you’ll find a variety of national, online patient support group activities to curb the loneliness that so often affects those with CKD. Chances are you’ll find more than one friend if you make that connection. And always be careful about depression. It can sneak up on you! Read the book, “Chronically Happy – Joyful Living in Spite of Chronic Illness,” and be inspired. It is my personal story of deciding to take simple, logical steps to live a full life and realize one’s dreams.  

Perhaps you are having difficulty understanding kidney disease. Knowledge is power! Listen in to the Essentials of Chronic Kidney Disease podcast to hear Dr. Stephen Fadem, a nephrologist in Houston, Texas, speak as he sheds light on CKD. He talks about the steps you can take in collaboration with your physician to either delay the progression of your disease or, in many instances, prevent it. Many people are not even aware that they have CKD, so be sure to be tested during your annual physical. Worried about your diet? The CKD Diet – What to Know Based on New Science by Dr. Kam Kalantar will be helpful.   

Learning can be fun, and you’ll see how when you check out the animated video, “Share Your Spare.” You’ll be introduced to Neff and Nuff, the two “kidney pals” who talk about what it means to donate the “gift of life.” If you share the video with your friends and family, it may encourage them to register to become organ donors. Watch the entire animated series on our website.  

Or maybe you are one of the many people living with CKD who need help with your diet. If so, this podcast, the “What’s for Dinner” blues, is for you! There’s been talk about low-protein diets, but keep in mind that your body still needs a certain amount of protein. Adding more plant-based sources of protein may help. It’s important to talk to a renal dietitian to know what is right for you.  

I have seen the evolution of this illness for 5O plus years of living kidney disease.  Although living with CKD can be difficult, the illness is manageable, especially when you have the opportunity to learn from other people’s experiences and wisdom, so make connections!  

Visit https://www.rsnhope.org/ today, join us and hang onto hope!  

**** 

Yet again, many thanks to Lori for all she offers to those of us who suffer from CKD, just as she does. As you can see, CKD awareness advocates like to work with each other. 

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! 

But How Do I Remember?

It’s common knowledge that our kidneys love water [unless you’re on dialysis]. It’s also common knowledge that many of us have problems combining the kidney and diabetic diets. In the United States, under Medicare you’re entitled to two hours of a dietician’s time per year if you have chronic kidney disease. Well, three the first year of your diagnose. If you’re not on Medicare, you’d have to check your insurance. Many of them do cover dieticians. 

Photo by Pixabay on Pexels.com

I took advantage of Medicare’s offering and am seeing a dietitian in order to combine the kidney and diabetic diets. Actually, I’m seeing him virtually. We had a zoom visit yesterday and somehow got on the topic of how to remember to drink the amount of water I need daily. I thought I’d set a reminder on my phone for every hour, but then he reminded me there are apps that will alert you to drink water. 

Naturally, that got me to thinking about these apps… and feeling sure we could all use whatever information I found about them. Ladies and gentlemen, prepare to hydrate. 

Although I wanted the app for my iPhone or Apple Watch, I used my computer to search. My first search was for ‘best free hydration reminder apps for 2022.’ Waterllama caught my eye, not just for the cute name, but for its 4.9 out of 5 star rating. This app does offer in app upgrades, although the basic app is free. According to their website, 

“… • Smart drink water reminders during your day 

• Track water in any drink: water, tea, matcha, coffee, juice, smoothie, soup, soda, beer, wine, cider, vermouth, liquor, etc [sic] 

• Fun Challenges: Sober Bear, Weight Loss Sloth, No Cheat Cheetah 

• Widget 

• Streaks habit tracker free 

• Fill up cute characters 

• Celebrate your day with a shareable recap illustration 

• Calculate daily water intake goal based on your weight, activity & weather 

• Set Custom drinking water goal 

• Custom drinks – set a name, icon, cup size, hydration ratio & caffeine 

• Water intake calendar 

Photo by cottonbro on Pexels.com

• Apple Health sync 

• Oz/Ml units 

• Water tracker Apple Watch app…. 

• Waterllama now remembers your last 3 intake amounts for any beverage that you add on a daily basis. You can quickly swipe or tap through them and add instantly without interacting with the cup. 

• You can also tap the dots icon at the bottom right of the screen to enter the exact amount manually.” 

Although the app is from the Ukraine, they are up and running despite Russia’s invading their country. 

My Water – Daily Water Tracker is rated 4.8 out of 5 stars, but there isn’t much information on their site. 

“It helps and motivates you to drink water according to the schedule and will keep the water drinking logs, including the quantity and time you drink water…. 

This app has been updated by Apple to display the Apple Watch app icon.” 

What’s nice about this app is that up to six members of the family can share it and it’s also available for your iPad. 

Despite its 4.2 star rating, Daily Water-Drink Reminder is the one I chose for myself. The description from their website will explain why: 

“⁃ Set goal amount of daily drinking water and track it. 

⁃ Log amount of daily drinking water. 

⁃ Touch to log each drinking. 

⁃ Check glasses of water drunk each day. 

⁃ Customize volume of each glass of water. 

⁃ Customize how much of water you drink each time, 1/4 glass, 1/2 glass or A glass. 

⁃ Plan drinking schedule and it will remind you when it’s time. 

⁃ 10 free alert sounds to choose. 

⁃ Histogram to show the amount of your one day’s, recent one week’s and one month’s amount of drinking water. 

⁃ Show amount of glasses of water you have drunk one day on the icon. 

⁃ Email the data of date, amount of water to anyone you would like. 

⁃ Supports transferring data to Health app. 

⁃ Supports WiFi backup & restore. 

⁃ Supports Dropbox backup and restore. 

⁃ Support oz and ml. 

⁃ Supports Apple Watch version. 

⁃ Supports 3D Touch function. 

⁃ Supports Today Widget.” 

What especially drew me was the simple entering of how much you drank on each of the water glasses in the app. Simple is the way I like to go. 

I’m sure by now, Android users are starting to feel left out. Don’t. Another 4.5 rated app, Water Drink Reminder – Hydro is one of those for you: 

“★ Water demand calculator – will calculate and suggest the amount of water to drink each day 
★ Reminders – will ensure regular hydration 
★ Charts and statistics – will show your progress as you regularly drink water 
★ Adjustable sizes of containers – adjust them to your needs 
★ Multilanguage （Deutsch, English, Español, Français, Italiano, Русский, Polski, Português, 中文, 日本語） 
★ automatic backup copies in a cloud 
★ data transfer between various devices 
★ access to analyses and charts from web browser (http://hydro-app.com)” 

Another Android app, with a 4.8 rating this time, is Water Drink Reminder. This is from their website: 

” * Water tracker that will remind you when and how much water to drink throughout the day 
* Customized cup and standard (oz) or metric (ml) units 
* You can set your start and end time to drink water for each day 
* Graph and logs of your schedule 
* Syncs weight data with Google Fit. 
* Syncs weight and drink water data with S Health. 
* You can login through your Google account. 
* You can backup and restore your drinking data through the water tracker.” 

As you can see, there are slight differences among the features the apps offer. This is all new to me and slightly overwhelming. That’s why I thought if I started you off in your search, it may not be overwhelming to you. Let’s remember I’m not the expert here. 

Until next week, 

Keep living your life! 
 

Does Coffee Count?

We all have water guidelines. Those on dialysis need to keep it down and those who aren’t need to keep it up. For example, my nephrologist suggested 64 ounces per day. That’s the equivalent of eight glasses of eight ounces each. To be honest, I use a water bottle that has the ounces marked on it. It’s just easier. 

Photo by Ivan Samkov on Pexels.com

Yet, eight ounces is not right for everyone. The National Kidney Foundation makes several recommendations: men usually need about 13 ounces while women need nine; and using their own words: 

“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.” 

Umm, why do we need water anyway? The Southeastern Massachusetts Dialysis Group tells us as chronic kidney disease patients [pre-dialysis also despite the group’s name], 

“Water helps your kidneys remove waste from your blood. Your body excretes these wastes and excess fluids in the form of urine that travels to your bladder before leaving your body. Water also helps keep your arteries open so that your blood can flow freely to your kidneys. This blood delivers oxygen and nutrients that help your kidneys function. Dehydration makes it more difficult for this delivery system to work. 

Mild dehydration can impair normal bodily functions, including your kidneys. Severe dehydration can actually lead to kidney damage. Drinking fluids is the best way to avoid dehydration, especially when you work or exercise especially hard or in warm or humid weather. 

People with diabetes, kidney disease or other illnesses that affect the kidneys need to take in adequate amounts of fluid to keep their kidneys performing well. People with low blood pressure need to take in plenty of fluids to maintain kidney health, for example. Your kidneys act like filters to remove toxins from your body. To push blood through the filters, though, the blood has to be moving with force; in cases of low blood pressure, there is not enough pressure to force the blood through the tiny filters of the kidneys.” 

Notice, please that the word ‘water’ has been replaced by the word ‘fluid.’ 

Hot cup of coffee by Markus Spiske is licensed under CC-CC0 1.0

But wait a minute, I drink two eight-ounce cups of black coffee most every day. Coffee is mostly water, isn’t it? Does that count in my water – or fluid – allowance? Let’s figure it out. I went to Everyday Health for this information: 

“There are so many different types of coffee to choose from, and your personal preference will affect how much hydration you’ll get from your brew. Two main factors dictate how much hydration you’ll be getting: the amount of caffeine and the volume of the beverage. For example, according to Mayo Clinic, an 8-oz cup of regular brewed coffee contains about 96 mg of caffeine while the same sized cup of decaffeinated brewed coffee contains only 2 mg of caffeine. This means, while you’ll be getting about 7 oz of hydration from the regular coffee, you’ll be getting the full 8 oz of fluid from the decaf. Caffeinated instant coffee falls somewhere in between, with 62 mg of caffeine per 8-oz serving. Similarly, a 1-oz serving of espresso contains about 64 mg of caffeine, which gives it almost as much diuretic power as a full 8 oz of caffeinated coffee, but since that’s all packed into only 1 oz of fluid, you’re really not getting any hydration from a shot of espresso.” 

Wow! That means I’m getting 14 of my 64 ounces from my favorite beverage. I only drink water and the black coffee, but if I’m ill or having stomach problems, I will eat soup. Is that a fluid, too? 

My favorite dictionary, the Merriam-Webster, defines soup for us: 

“a liquid food especially with a meat, fish, or vegetable stock as a base and often containing pieces of solid food” 

Double wow! So even if I’m not that hungry and just have a cup of soup, there’s another eight ounces or so of liquid, or as I see it being called now, hydration. So now I’ve had about 24 of my 64 ounces of liquid [no longer just water and sometimes called hydration] requirement for the day. 

Hmmm, if soup counts as a liquid and coffee counts as a liquid [tea, too], what else does? Thanks to the American Kidney Fund’s Kidney Kitchen for the following graphic: 

“Examples of fluid: 

Ice 

Soups and stews 

Pudding 

Ice cream, sherbet, sorbet, popsicles, etc. 

Protein drinks (Nepro, Novasource, Ensure, etc.) 

All beverages (water, soda, tea, coffee, milk, nondairy milk, etc.) 

Jell-O® other gelatin products and gelatin substitutes (pectin, arrowroot powder, etc.)” 

Triple wow! So, if you get tired of water, water, water [I don’t.] to fulfill your fluid or hydration needs, look at the variety of foods you can have. Of course, if you have diabetes, you’d have to get the sugar free versions of these foods… and, please, no chemical artificial sweeteners. Sort of opens up the world of fluids, doesn’t it? [Notice I’m using the word ‘fluids’ or the word ‘hydration’ instead of the word ‘water.”] 

St. Joseph’s Healthcare, Hamilton has a bit more information for us: 

“Fluid is a liquid or any food that turns into a liquid at room temperature…. Fruits and vegetables naturally contain water. If consumed in moderation, fruits and vegetables should not contribute large volumes of water to your daily total intake of fluids. Therefore, fruits and vegetables do not need to be counted as part of your daily fluid intake.” 

I prefer to stick with my water and coffee but look at all the foods that have been made available to you. My favorite treat as a child was chocolate pudding. I remember the smooth, rich creaminess of it. My brother’s was orange jello. He said it felt cool going down his throat. I’ll be content with my memories. You go enjoy these foods. 

Until next week, 

Keep living your life!  

Happy Birthdays

Next week is my birthday. I’ll be three quarters of a century old. Which, of course in my weird way of thinking, brings me to the fact that this month is insulin’s 100^th birthday. That same insulin that keeps me going now that I have only one third of my pancreas left due to cancer. That same insulin that keeps diabetics, both type 1 and type 2, going. I was curious about how all this came about. 

Many thanks to the American Diabetes Association for their comprehensive explanation: 

Photo by Mikhail Nilov on Pexels.com

 
“Before insulin was discovered in 1921, people with diabetes didn’t live for long; there wasn’t much doctors could do for them. The most effective treatment was to put patients with diabetes on very strict diets with minimal carbohydrate intake. This could buy patients a few extra years but couldn’t save them. Harsh diets (some prescribed as little as 450 calories a day!) sometimes even caused patients to die of starvation. 

So how did this wonderful breakthrough blossom? Let’s travel back a little more than 100 years ago.… 

In 1889, two German researchers, Oskar Minkowski and Joseph von Mering, found that when the pancreas gland was removed from dogs, the animals developed symptoms of diabetes and died soon afterward. This led to the idea that the pancreas was the site where ‘pancreatic substances’ (insulin) were produced. 

Later experimenters narrowed this search to the islets of Langerhans (a fancy name for clusters of specialized cells in the pancreas). In 1910, Sir Edward Albert Sharpey-Shafer suggested only one chemical was missing from the pancreas in people with diabetes. He decided to call this chemical insulin, which comes for the Latin word insula, meaning “island.” 

So what happened next? Something truly miraculous. In 1921, a young surgeon named Frederick Banting and his assistant Charles Best figured out how to remove insulin from a dog’s pancreas. Skeptical colleagues said the stuff looked like ‘thick brown muck,’ but little did they know this would lead to life and hope for millions of people with diabetes. 

With this murky concoction, Banting and Best kept another dog with severe diabetes alive for 70 days—the dog died only when there was no more extract. With this success, the researchers, along with the help of colleagues J.B. Collip and John Macleod, went a step further. A more refined and pure form of insulin was developed, this time from the pancreases of cattle. 

In January 1922, Leonard Thompson, a 14-year-old boy dying from diabetes in a Toronto hospital, became the first person to receive an injection of insulin. Within 24 hours, Leonard’s dangerously high blood glucose levels dropped to near-normal levels. 

The news about insulin spread around the world like wildfire. In 1923, Banting and Macleod received the Nobel Prize in Medicine, which they shared with Best and Collip. Thank you, diabetes researchers! 

Soon after, the medical firm Eli Lilly started large-scale production of insulin. It wasn’t long before there was enough insulin to supply the entire North American continent. In the decades to follow, manufacturers developed a variety of slower-acting insulins, the first introduced by Novo Nordisk Pharmaceuticals, Inc., in 1936. 

Insulin from cattle and pigs was used for many years to treat diabetes and saved millions of lives, but it wasn’t perfect, as it caused allergic reactions in many patients. The first genetically engineered, synthetic ‘human’ insulin was produced in 1978 using E. coli bacteria to produce the insulin. Eli Lilly went on in 1982 to sell the first commercially available biosynthetic human insulin under the brand name Humulin. 

Insulin now comes in many forms, from regular human insulin identical to what the body produces on its own, to ultra-rapid and ultra-long acting insulins. Thanks to decades of research, people with diabetes can choose from a variety of formulas and ways to take their insulin based on their personal needs and lifestyles. From Humalog to Novolog and insulin pens to pumps, insulin has come a long way. It may not be a cure for diabetes, but it’s literally a life saver.” 

Naturally, I had to know who I recognized that might have died from diabetes or diabetes related complications. Ranker.com was helpful here: 

Alexander Graham Bell in 1922 

Johnny Cash in 2003 

Carroll O’Connor in 2011 

Buddy Hackett in 2003 [Personal note, I remember seeing him perform while I was a cocktail waitress in one of the Catskill Mountain Borsch Belt hotels where I earned my college tuition.] 

James Cagney in 1986 

Ella Fitzgerald in 1996 

Penny Marshall in 2018 

Jules Verne in 1905 

Nell Carter in 2003 

William F. Buckley, Jr. in 2008 

Okay, I get it that Mr. Bell and Mr. Verne died before insulin was in common use, but what did the others die of? According to the New York Times, Mr. Cagney not only had diabetes, but had suffered several strokes. The Los Angeles Times tells us that Ms. Fitzgerald died of heart disease and stroke. I went to the Tennessean to discover that Mr. Cash died of respiratory failure brought on by complications from diabetes. The Washington Post mentions that Mr. Hackett had diabetes. The New York Post points out that Ms. Carter had suffered from diabetes for years. The Guardian explained that Mr. Buckley suffered from diabetes and emphysema. Wikipedia informs us that Mr. O’Connor died of a heart attack brought on by complications from diabetes. Ms. Marshall died of atherosclerotic cardiovascular disease and diabetes according to USA Today. 

My point? Diabetes doesn’t exist in a vacuum. If not taken care of, there can be other comorbidities that seem to sneak in. We know that high blood glucose can damage your small blood vessels, including those in the kidneys. It’s the kidneys that filter your blood. If your kidneys are not working properly – perhaps due to diabetes damage – fluids and wastes build up in your body. A body that doesn’t function as well as it could will lead to other illnesses.  

Take care of your diabetes. Work with your endocrinologist to find the correct dosage and brand of insulin you need… and be thankful for insulin. I know I certainly am. 

Until next week, 

Keep living your life!  

We interrupt…

Wow, just wow. I had intended to keep writing about the basics of chronic kidney disease today, but I just spoke with my nephrologist via FaceTime. That’s a call I had waited over a month to have, even though my GFR had dropped 20 points. I thought the drop constituted the need for an immediate callback from him, but he just didn’t have the time. He was overwhelmed with the hospitalized Covid patients who needed dialysis. 

During our talk today, he told me it isn’t just nephrology that’s affected. All specialties are now three months out for appointments. Three months! There’s a shortage of staff due to Covid, including doctors that specialize in a specific organ. 

I found this downright scary until he explained that this variant, Omicron, probably will not spike as long as the others have. At least that’s the latest prognosis. I did find that comforting. My GFR has resumed its usual number, so I can afford to be comforted by this. I think of others who have immediate medical problems and I cringe. 

How, in heaven’s name, can we improve this situation? How can we help? First and foremost, get your vaccine. My husband and I are fortunate enough to have had both Moderna vaccines and the Moderna booster with nothing more than a sore arm for a day or two as a side effect. I know not everyone is that lucky. I also know it’s worth whatever side-effects you have. My grown children lost their father to Covid before there were vaccines available. 

Are the vaccines safe for us? I’ll let the National Kidney Foundation answer that question: 

“While the effectiveness rates of COVID-19 vaccines are very good, we now know that people who are on immunosuppression medications for the treatment of advanced kidney disease and kidney transplant recipients, may not receive the same level of protection, also known as antibody immunity, from the COVID-19 vaccine as people who are not on immunosuppressive medication. 

Most doctors agree that the benefits of the vaccine for people with chronic kidney disease at any stage, those on dialysis, and kidney transplant recipients are much greater than the risk of serious disease or complications from COVID-19. Talk to your doctor or other healthcare professional about getting a COVID-19 vaccine.” 

Okay, we’ve heard that before. But what is in the vaccines? According to the Moderna website, there is no virus in the vaccination: 

“A vaccine based on messenger RNA (mRNA) technology does not use inactivated virus, attenuated virus, or any other kind of virus. 

The Moderna COVID‑19 Vaccine uses mRNA to provide a blueprint for your cells to build your body’s defense against the virus. 

This allows the body to generate an antibody response, and to retain the information in memory immune cells, with the goal of attacking the virus if the vaccinated individual is exposed.” 

Let’s take a look at Pfizer’s vaccine now.  This is what the Centers for Disease Control offers: 

“All COVID-19 vaccine ingredients are safe. Nearly all of the ingredients in COVID-19 vaccines are ingredients found in many foods – fats, sugars, and salts. The Pfizer-BioNTech COVID-19 vaccine also contains a harmless piece of messenger RNA (mRNA). The COVID-19 mRNA teaches cells in the body how to create an immune response to the virus that causes COVID-19. This response helps protect you from getting sick with COVID-19 in the future. After the body produces an immune response, it discards all of the vaccine ingredients, just as it would discard any substance that cells no longer need. This process is a part of normal body functioning. 

All COVID-19 vaccines are manufactured with as few ingredients as possible and with very small amounts of each ingredient.” 

I’m not going to research the Johnson & Johnson vaccine since there seems to be some controversy about its effectiveness and the possibility of blood clots. Do not panic if you’ve taken it, a booster might just do the trick for you. Originally, people liked this vaccine because only one dose was needed. 

Vaccines are not your only line of defense. Masks also help. We’ve been using cloth masks, but the N95 or KN95 seem to provide better protection again the omicron variant. 

The FDA explains: 

Photo by Towfiqu barbhuiya on Pexels.com

“A surgical mask is a loose-fitting, disposable device that creates a physical barrier between the mouth and nose of the wearer and potential contaminants in the immediate environment. These are often referred to as face masks, although not all face masks are regulated as surgical masks. Note that the edges of the mask are not designed to form a seal around the nose and mouth. 

An N95 respirator is a respiratory protective device designed to achieve a very close facial fit and very efficient filtration of airborne particles. Note that the edges of the respirator are designed to form a seal around the nose and mouth. Surgical N95 Respirators are commonly used in healthcare settings and are a subset of N95 Filtering Facepiece Respirators (FFRs), often referred to as N95s.” 

Let’s not forego hand sanitizer, either. We have bottles of it on the shelf right next to our front door. We also have sanitizer in the pockets on the car’s doors. We make a conscience effort to use them. 

Don’t forget about that six foot distance between you and others. Since both my husband and I are immunocompromised, just as you might be if you’re a transplantee, we stay home except for medical appointments. And that’s only if Televideo appointments are not appropriate. Our visitors are only those who are double vaxxed and boostered. And, yes, we do ask that they wear their masks while in the house and use hand sanitizer upon entering the house.  
 

Has this made our lives miserable? No, not at all. Bear is 75 and I am almost 75. We have grandchildren. I have lots of kidney disease awareness to spread. We can find plenty to keep us happily occupied in the house in return for a greater possibility of having a future. Do your bit so that the length of medical waits may lessen… please. 

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! 

Feeling Bookish

Here’s hoping you had a terrific Christmas and/or Kwanzaa this past weekend. With Covid, it was a quiet, just-the-two-of-us weekend celebration. Although, Bear did have his traditional non-renal Christmas dinner and the non-diabetic Christmas cookies his daughter made for him.  

Presents for us were minimal. What can you possibly get for people our age that they don’t already have? But there were lots of presents for the grandsons. Even though they’re only two and three years old, each was given books. 

Yep, that got me to thinking. We know What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and the SlowItDownCKD series are available on Amazon. But what else is available for chronic kidney disease patients? 

As I started to poke around on the internet, I saw that CKD books were majorly divided into two categories: textbooks we probably wouldn’t understand and cookbooks [loads and loads of cookbooks]. I was surprised by this and could not accept that my book and other two I found were the only books for kidney patients published in 2021. 

One of those books is DIALYSIS IS NOT YOUR LIFE – DINYL: The Power To Redefine Your Life While on Dialysis by Fred Hill. 

“When I began dialysis, I was terrified and thought my life was over. The only information I could find was explaining what dialysis was and the importance of phosphorus, potassium, etc. There was nothing to encourage, motivate, and/or teach me how to live a quality level of life while on dialysis. I wrote this book as a tool to inspire every dialysis patient and to let them know that your life is not over. You can still live and enjoy your life out loud while on dialysis!” 

The other book is Unbelievable Facts About Kidney Disease written by Intelligentsia Publishing. 

“Learn facts you have never heard before and erase the many myths you have heard about kidney disease. We all have kidneys and most of us have heard of kidney disease but there’s still so much that we don’t know about this disease. From their causes, symptoms, to potential treatments and many more, we bet you haven’t heard some of these health facts! Unbelievable Facts About kidney disease [sic] provides information about kidney diseases, the various types from acute kidney failure to chronic kidney disease, and everything you need to know about this disease. This educational book is meant for adults, teenagers, students, and children; you will Learn about kidneys, their unique functions, how to prevent this disease, and much more. This book also contains quiz questions at the back that are perfect for students who want to learn more about the kidneys and a bonus activity page at the end.” 

Again, I can’t accept that only three CKD books for us were published this past year. Should you know of any CKD books for patients that are not textbooks, diet books, or [this is new] journals, and were published this year, please let us know.          

However, I did discover a book that was updated in 2021: 

In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors by Risa Simon. 

“Enhanced & Expanded [ UPDATED RELEASE—November 8, 2021] Need to find a Living Kidney Donor? Don’t Know Where to Start? Start Here. This Book is a Life-Changing Game-Changer! You need a living kidney donor, but you don’t know where to start. You want to make sure you don’t miss any of the important steps in the process, but there’s no owner’s manual on that sort of thing. You’ve been told to talk to your family and friends, but you shudder at the thought of that unimaginable “ASK.” What if you could find a way to attract potential donors without ever having to ask anyone to give up a kidney? Well, now you can—and this book shows you how! Whether you’re trying to avoid dialysis (or end your wait for a transplant), In Pursuit of a Better Life: The Ultimate Guide for Finding Living Kidney Donors is the book you need.” 

I thought maybe I was searching incorrectly so I searched for CKD books for patients published in 2020 as a test. This time, in addition to those textbooks [You should see the prices for them.] and diet books, I did find books for us. So, I was searching correctly. It didn’t make me feel that much better because there seems to be such a dearth of the kind of books we need, the books that can be understood by those that are not in the medical profession but want to know about our condition. 

By the way, I want to make it clear that I am not endorsing these books, simply letting you know they exist should you chose to read them. The descriptions were written by the authors themselves. Back to 2020: 

Learn the Facts about Kidney Disease: A Self-Help Guide to Better Kidney Health with Proven Therapies by Steven Rosansky, M.D. 

“This book written for the average reader, offers useful information for patients with very mild CKD to those patients who need to plan for dialysis or kidney transplant. It offers scientifically proven ways to slow progression of CKD, including a chapter on a Smart Diet for all CKD patients. This diet not only can slow CKD progression but can also help patients to live longer and better. It offers the best treatments for the medical problems that can come with a diagnosis of CKD. For most patients this book will alleviate concerns about having CKD and for some patients with advanced CKD it offers an approach that can delay the start of dialysis for many months or even years in some cases.” 

How to Survive Outpatient Hemodialysis: A Guide for Patients with Kidney Failure by Steve Belcher, RN, MSN, MS. [Steve wrote a guest blog for SlowItDownCKD and also interviewed me on his podcast in the past.] 

“For kidney failure patients anxious and unaware of what to expect on their first days of outpatient hemodialysis, How to Survive Outpatient Hemodialysis is an uncomplicated read. It prepares new dialysis patients and their caregivers for the unknowns practically so that they are not overwhelmed with their new day to day reality.” 

Kidney Failure to Kidney Transplantation: A Patient Guide by Dr. Fahad Aziz & Dr. Sandesh Parajuli    

“Dr. Parajuli and Dr. Aziz have written this book to help educate patients who may have questions about: 
* The decision to pursue the transplant option 
* The transplant process 
* How transplant recipients are selected 

Should you choose to – or have to [thanks, Covid] – stay in New Year’s Eve, especially if you’ll be alone, now you have some suggestions for books to keep you company. 

Until next week, 

Keep living your life! 

Only Two Weeks Left

Well, will you look at that? 2021 is almost behind us. ‘Finally!,’ some folks may say. But didn’t we say the same thing at the end of 2020?  

One thing about this year and last is that we’ve become comfortable with online life. That includes all kinds of kidney disease awareness, support, and education. I’m well aware that SlowItDownCKD is not the only vehicle that offers these. Today’s blog will be an introduction to other sites that also offer one, two, or three of these.   

Kidney Trails and I just agreed that my weekly blog will be posted on their site. I’m excited about that, so I’ll jump right onto their site https://kidneytrails.com. This is what they have to say about themselves: 

“Kidney Trails is an organization that is dedicated to helping those that may be facing kidney disease by…  

…bringing real life experience from those that have travelled the road of kidney disease and also information from the medical professionals to help you on your journey. 

… bringing you stories of inspiration to inspire you to aim higher and reach your goals. 

… bringing you a quote or thought to help you in your week.” 

Their site is impressive. Take a look for yourself. By the way, What Is It Like to Be a Dialysis Patient, written by their Chief Operating Officer Dwelyn Williams, is available at KidneyTrails.com/store. Scroll down to the bottom of the page. 

Another group I’m associated with is Lyfebulb at Lyfebulb.com. Their mission statement follows: 

“Our mission is to reduce the burden of chronic disease through the power of the patient.”

 They do this in a multitude of ways. First is patient engagement as ambassadors. That’s me and it could be you, too. Look for the application on their site. They deal with many conversations: general medical issues, transplant, chronic kidney disease, inflammatory bowel disease, diabetes, multiple sclerosis, cancer, migraine, psoriasis, chronic cough, mental health, and substance use disorders. But it’s not only patient discussions, but there are also innovation challenges, panel discussions, community activities, and more. Check them out for yourself. 

On to the Urban Kidney Alliance at https://urbankidneyalliance.org. They have both a mission and a vision statement: 

“MISSION STATEMENT 

To advocate, educate, enlighten, empower, and consult communities and individuals in urban cities at-risk for chronic kidney disease (CKD) and other health-related conditions. We collaborate and engage with community stakeholders and gatekeepers to increase health education awareness and promotion in urban communities at-risk for chronic kidney disease. 

VISION STATEMENT 

To be a vital resource for kidney disease awareness and education for individuals and communities at risk for chronic kidney disease. We look forward to doing our part to create a world without health disparities and free of health information ignorance.” 

I have a special spot in my heart for them because, not only did Steve Belcher interview me on their podcast, but Steve also wrote a guest blog for SlowItDownCKD while I was taken up with my cancer dance. Here’s another by the way, Steve has a book out, How to Survive Outpatient Hemodialysis. 

There’s no way this blog would be complete without the Renal Support Network at https://www.rsnhope.org. This is from their website: 

“Renal Support Network (RSN) empowers people who have kidney disease to become knowledgeable about their illness, proactive in their care, hopeful about their future and make friendships that last a lifetime. 

People who have kidney disease are often more receptive when essential information is presented to them by someone who has walked in their shoes and who shares their personal experience. Seeing fellow peers do well despite the diagnosis is often overlooked as a key element of care. Survivorship is essential!” 

They offer a magazine, the famous teen prom, renal recipes, a peer support hot line, podcast, concerts, advocacy, and loads more. There’s so much to choose from. I would urge you to take a gander. 

Lori Hartwell, the founder, was one of the first people I contacted well over 13 years ago when I first wanted to become a CKD advocate. I entered (and won) the essay contest. Lori and I stayed in contact off and on over the years. We were recently surprised to find we were both working on the same project when we ran into each other online. Yet another by the way, Lori also has a book out, Chronically Happy. 

Several years ago, I was happily involved with creating Responsum Health as a patient advisor. Their website states: 

“Living with a chronic condition, like kidney disease, can leave you feeling isolated and alienated. It can be hard to express how you feel to your family members, friends, and colleagues who don’t experience the disease-related challenges you do every day. Support groups for kidney disease, whether peer- or facilitator-led, provide an opportunity to connect with other kidney disease patients who understand what you’re going through. 

Why join a CKD support group 

Joining a support group will allow you to: 

Safely share your emotions 

Hear firsthand experiences of living with the disease and its treatments 

Trade coping mechanisms 

Receive encouragement 

Feel connected, understood, and empowered” 

There is a great deal of kidney disease information on the site, as well as a forum for patients, and a newsfeed. Their menu includes  

Newsfeed 

New For Me 

My Notebook 

My Topics 

Dictionary 

Suggest An Article  

I was lucky enough to have met David White who is on their Expert Advisory Council at an AAKP meeting a few years ago. I’ve been a patient advisor with Kevin Fowler, another member of the Expert Advisory Council, a number of times and he also jumped right in with a guest blog for SlowItDownCKD during that awful cancer dance. 

There are so many more groups, but there’s no more room in today’s blog. If you’d like to know about a specific group, ask. You can leave your questions in the comments section of the blog. 

Have yourself a Merry Christmas and Happy Kawanza. Oh, and my last by the way: Don’t forget the SlowItDownCKD series.

Until next week, 

Keep living your life! 

This One’s a Doozy

Have I got a doozy of a topic for this week. As you may or may not know, I had diabetes type 2 before two thirds of my pancreas was removed to rid me of cancer. I’ve also had chronic kidney disease for 13 years now. I know, what a medical mess [but an alive medical mess!]. I was on Glipizide – an oral medication for diabetes – for a while and then it just didn’t work well, so we switched to injectable insulin. That was doing the job for a while and then…. 

I have blood glucose readings in the 300s, 400s, even hitting 500. That is so not normal. My usual blood glucose range is 70-150. Wait a minute. My eGFR tanked, too. It went from 50% to 40%. The want-to-be-detective in me saw a connection here, but was it real? Time to start digging. There are a few things you should know first. 

One would be the function of the pancreas and what that has to do with insulin. MedicineNet tells us: 

“The pancreas, which is about the size of a hand, is located in the abdomen, just behind the stomach. It is surrounded by other organs including the small intestine, liver, and spleen. [Lost my spleen, too, during the cancer surgery.] The pancreas plays a vital role in converting the food into energy. It mainly performs two functions: an exocrine function [That means the secretion it produces is released outside its source.]  that helps in digestion and an endocrine function [This means the hormone is released directly into the blood stream.] that controls blood sugar levels. Because of the deep location of the pancreas, tumors of the pancreas may be difficult to locate. 

The exocrine pancreas produces natural juices called pancreatic enzymes to break down food. These enzymes travel through the tubes or ducts to reach the duodenum. [That’s the part of the small intestine located below the stomach.] The pancreas makes about eight ounces of digestive juices filled with enzymes every day. The different enzymes are as follows: 

Lipase: Along with bile, these enzymes break down fats. Poor absorption of fats leads to diarrhea and fatty bowel movements. 

Protease: It breaks down proteins and builds immunity against the bacteria and yeast present in the intestine. Poor absorption of proteins can cause allergies. 

Amylase: It helps to break down starch into sugar, which is then converted to energy to meet the body’s demand. Undigested carbohydrates can cause diarrhea. 

Unlike enzymes, hormones are released directly into the bloodstream. Pancreatic hormones include: 

Insulin: This hormone is produced in the beta cells of the pancreas and helps the body to use sugar as the energy source. Lack of insulin can increase blood sugar levels in the blood and cause serious diseases such as diabetes. [I bolded this.] 

Glucagon: Alpha cells produce the hormone glucagon. If blood sugar gets too low, glucagon helps to increase it by sending a message to the liver to release the stored sugar. 

Amylin: A hormone called amylin is made in the beta cells of the pancreas. This helps in controlling our appetite (eating behavior).” 

You’ll find the same sort of explanations in my upcoming new book, Cancer Dancer. I’ll let you know when it’s released. 

You may need these reminders about your kidney function. Estimated Glomerular Filtration [abbreviated as eGFR or GFR] rates of 40% and 50% are both stage 3 CKD. But stage 3 is broken down to two parts: 45-59% is stage 3a while 30-44% is stage 3b… worse than stage 3a. So, I dropped from stage 3a to 3b.  

Hmm, was that because my blood glucose was so high? According to the National Kidney Foundation: 

“Diabetes can harm the kidneys by causing damage to: 

Blood vessels inside your kidneys. The filtering units of the kidney are filled with tiny blood vessels. Over time, high sugar levels in the blood can cause these vessels to become narrow and clogged. [Again, my bolding.] Without enough blood, the kidneys become damaged and albumin (a type of protein) passes through these filters and ends up in the urine where it should not be. 

Nerves in your body. Diabetes can also cause damage to the nerves in your body. Nerves carry messages between your brain and all other parts of your body, including your bladder. They let your brain know when your bladder is full. But if the nerves of the bladder are damaged, you may not be able to feel when your bladder is full. The pressure from a full bladder can damage your kidneys. 

Urinary tract. If urine stays in your bladder for a long time, you may get a urinary tract infection. This is because of bacteria. Bacteria are tiny organisms like germs that can cause disease. They grow rapidly in urine with a high sugar level. [You guessed it: my bolding.] Most often these infections affect the bladder, but they can sometimes spread to the kidneys.” 

Well, if your kidney’s blood vessels are narrowed and clogged, or you can’t tell when your bladder is full, or a bladder infection spreads to the kidneys, your kidneys are not going to work as well as they should. If you don’t remedy any of these three problems, it stands to reason you could be harming your kidneys which would reduce your kidney function. 

DaVita, the dialysis and CKD education company that helped me bring CKD education to the Salt River Pima-Maricopa Indian Community when I first started working for CKD awareness, puts it quite succinctly: 

“When blood sugar levels get too high, the condition is called hyperglycemia. Hyperglycemia is a problem for people with diabetes, and it poses a significant health risk when you have chronic kidney disease (CKD). If your diabetes is not controlled, it can lead to increased loss of kidney function, cardiovascular disease, vision loss and other complications. That’s why it is vital for people with kidney disease and diabetes to learn the symptoms of high blood sugar and develop ways to prevent it.” [You know who bolded that.] 

Like insulin. In my case, it’s a matter of learning the appropriate dosage of insulin. It’s still new to me and, obviously, too low a dosage. We’ll get it right. 

Until next week, 

Keep living your life!   

Does It or Doesn’t It?

I was speaking with a diabetes expert the other day when I found myself shocked. She told me in no uncertain terms that chronic kidney disease does NOT cause diabetes and that she’d never heard of that. Was I deluded? Was I wrong in thinking I’d read studies that it does? Was I going a wee bit nutsy? I hadn’t realized how very convinced I was that it does. 

Okay, boys and girls, now we dig… with respect to this Harvard Medical School graduate. You know me: if I don’t understand something, I have to find out for myself. Which means you find out, too, via the blog. 

I found one sentence in an article on the Joslin Diabetes Center site, part of Harvard Medical School, which puzzled me: 

“Gordin [Gail here: that’s Daniel Gordin, MD, PhD, lead author on the paper] examined complications in people with at least 25 years of diabetes, by which time kidney disease usually occurs in those prone to the condition.” 

What did this mean? It seems to suggest that chronic kidney disease causes diabetes, but it’s not clear enough. I had to look further. Bingo! Science Daily published a study fromThe Journal of Clinical Investigation that had an explanation I could understand: 

“At the heart of pancreatic beta cells, Drs. Koppe [Gail again: she’s a nephrologist.] and Poitout identified a particular protein, called phosphofruktokinase 1. ‘The function of this protein is altered by an increase in blood urea, which occurs in chronic kidney disease. Increased urea causes impaired insulin secretion from the pancreatic beta cells. This creates oxidative stress and excessive glycosylation of phosphofructokinase 1, which causes an imbalance of blood glucose and may progress to diabetes,’ said Dr. Poitout, who is also professor at the University of Montreal and the Canada Research Chair in Diabetes and Pancreatic Beta-Cell Function.” 

How about a reminder here? Urea, as defined by RxList is: 

“A nitrogen-containing substance normally cleared from the blood by the kidney into the urine. …”   

Nope, I’m not convinced that my thinking ckd causes diabetes was a misconception. Back to the drawing board or, in this case, the keyboard. WebMD published a HealthDay News article that was helpful: 

“”We have known for a long time that diabetes is a major risk factor for kidney disease, but now we have a better understanding that kidney disease, through elevated levels of urea, also raises the risk of diabetes,” he said in a university news release. 

‘When urea builds up in the blood because of kidney dysfunction, increased insulin resistance and impaired insulin secretion often result,’ Al-Aly said. 

He’s an assistant professor of medicine at Washington University School of Medicine in St. Louis.” 

I want to make sure you understand that we are not discussing diabetic kidney disease. I had to rewrite this blog several times because I got them mixed up. Don’t you mix them up. Health teaches us that: 

“Diabetic kidney disease is exactly how it sounds: a type of kidney disease caused by diabetes. It’s also known as diabetic nephropathy. 

Photo by Artem Podrez on Pexels.com

‘When you have diabetes, over time the small blood vessels in your body are injured,’ explains Dr. Malone. When that happens in your kidneys, they can’t do their job and clean your blood properly. As a result, your body holds onto more water and salt than it should, and waste materials build up in your blood. How quickly or slowly this happens depends on how well—or poorly—your diabetes is controlled. 

‘If you catch it early and treat the underlying diabetes, your chronic kidney disease will get better,’ says Priyamvada Singh, MBBS, a kidney specialist at the Ohio State University Wexner Medical Center in Columbus, Ohio. ‘But if you let your diabetes go uncontrolled and your blood glucose run wild, the damage may happen very quickly.’” 

All clear? You know we’re not talking about diabetic kidney disease, but rather ckd causing diabetes? And that all the information above supports that ckd can cause diabetes? Good. Now let me throw a monkey wrench into the works. 

I also came across a study supporting that ckd does not cause diabetes. So, where are we? I’m comfortable thinking that ckd may cause diabetes. That’s different than ckd does cause diabetes. Either way, there is a strong connection between the two. I’d suggest that have yourself tested for ckd if you have diabetes. It’s a simple blood test plus a urine test. 

Maybe it’s a good idea to have yourself tested for diabetes, too, if you have ckd. The health system I use, HonorHealth, suggests the following: 

“Much of the time, a simple blood test that evaluates your current blood glucose level is the first step in diagnosing diabetes. 

If the blood test reveals that your level is above 125 mg/dl, your doctor will ask you to repeat the test on a different day to confirm a diabetes diagnosis. Or your doctor may immediately order an A1C test, which measures your average blood glucose (sugar) levels over the last three months. The test looks at the amount of glucose that has attached to the red blood cells as they move through the bloodstream. The more glucose in the blood, the higher the A1C percentage. The higher the A1C, the more damage is occurring to your large and small blood vessels. 

Especially for those who have diabetes, the A1C test gives you a better picture overall than just a single blood test that measures only your current level of blood glucose that day. 

A normal A1C level ranges from 4.5 to 5.6 percent for someone who doesn’t have diabetes. When the A1C test is used for diagnosing diabetes, an A1C level above 6.4 percent on two separate tests indicates diabetes. 

For those with diabetes, doctors often recommend an A1C level of 7 percent or less for optimal well-being.” 

This was a difficult blog to write, but it was fun, too. 

Until next week, 

Keep living your life! 

What It’s Like To Be A Kidney Donor

Last week I’d mentioned that I don’t have any first hand experience as a kidney donor, but knew someone who did. Although I know she’s pretty busy with her business, I took a chance and asked her if she’d like to guest blog about her experience as a kidney donor. Amy Donohue responded practically before I hit send. She was ready, much more than willing, and able to do just that. I had her guest blog in my hands within a day. As Amy says, “I love spreading the gospel of live organ donation.”

Ladies and gentlemen, this was Amy’s experience.

“I’ll do it. I’ll donate my kidney. What do I have to do?

Amy and TinyMom

That was a Friday night tweet from me in January, 2011, to a Twitter follower whose mother finally agreed to be put on the transplant list at Mayo Clinic. I saw a conversation between two people I had been following for a few years and responded.

I started testing as soon as I learned the process, and it started with a blood test to see if our blood types matched closely enough for me to be able to donate. My recipient, TinyMom, emigrated to the States in the 70s. Her kidney failure had been caused by high amounts of ibuprofen for a migraine. I lost my father to cancer, and couldn’t help in any way at all, which prompted me to help her.

My testing had to be spread out over a couple months because I’m a single woman, living alone, and I had had, at the time, a fairly new job. I kept track of all appointments to give to my bosses and maintain transparency about my testing and donating. I tried to do as many tests at once as possible, and spent Valentine’s Day 2011 at the Mayo Clinic in North Phoenix. 

The first test that day was a pregnancy test. When someone wants to donate, tests have to be thorough because there can be no harm to the donor, and they need to make sure we are healthy enough to not only donate, but make it through a 90-minute surgery. Next, I had to give several vials of blood. The third appointment that day was with an advocate. For donors, transplant centers want to be sure donors are advocated for and taken care of. I also had to see a social worker and psychiatrist, to make sure my intentions were pure. I had a mammogram, CT scan, and gave more blood and urine during the testing process.

I wanted nothing out of this but to help a woman have a better quality of life. Due to the whole process starting because of a tweet, though, I also had to do media interviews. I wanted to do them to educate others who may be interested in donating. The more open I was about testing, the more I hoped others would follow suit and do what I was doing. The interviews were exhausting for me, because not only was donating a kidney on my mind 24/7, but it also invited a lot of negativity. Thankfully, I had a ton of community support to get through it. I still hadn’t even met TinyMom, until we had our local FOX affiliate interview all of us together.

Two weeks before the scheduled surgery, I was fired from my job for missing my sales goal due to testing. Thankfully, the following morning, a Twitter follower hired me, and I started working immediately. I couldn’t be unemployed for the couple of weeks leading up to the surgery, because then I would have nothing to do but think about what was coming. I was tired of thinking.

The Today Show came out twice to interview us, and were there as we were being wheeled into the operating room. My last words: “Get that f**king camera out of my face!” (Sorry for the language!) All I wanted was to get this kidney out of me and into her, so she could be there for her family, and here I was, in a hospital gown all doped-up but still having a camera in my face. At this point, I wanted that anesthesia so I could have a break for a couple hours. I was exhausted mentally and emotionally. It was April 19th, 2011.

As I was being prepped for surgery, the surgeon noticed a potential problem. When they had given me a CT scan to decide which kidney to take, they had to make sure TinyMom had the same number of veins and arteries going to and from the kidney. They decided on my right kidney, which is rare, because it seemed like the best match.

When they cut me open, though, they realized I had had an extra renal vein that didn’t show up on the CT scan. My team of surgeons immediately spoke with TinyMom’s team, explaining there could be a potential problem. They had just finished prepping her for surgery.

Their response: “You’re not gonna believe this, but SHE has the SAME renal vein that didn’t show up on her CT scan!” 

This was meant to be. 

When I heard about it after waking up in my room, I cried. It was finally over, and we had a connection that was even deeper than I had thought. 

I was up and walking around within an hour or two of getting to my room. The more we walk after surgery, the quicker we heal and can go home. My stay was about 48 hours. I was walking around the nurses station by the evening of my donation. I was feeling great! 

I was out of the hospital in 48 hours, and got home on a Thursday. I was at my desk working the next day. The worst part of the recovery was the constipation from the anesthesia. I was hiking within 3 weeks of surgery, and could have sex around that time, too. Since they removed my kidney where women have a C-section, I just had to wait for the swelling of my abdominal muscles to ease before resuming normal physical activities. 

It’s been ten years now, and I am healthier than I have ever been. I haven’t seen TinyMom for awhile, due to the pandemic, but we will get together soon. We talk on the phone a lot and really miss each other. We have a deep connection, made deeper by a 3-ounce organ.”

Thank you, Amy. Now we know. 

Until next week,

Keep living your life!

 

It’s All Connected

With Mother’s Day last month and Father’s Day this month, I’ve been thinking about family a lot. Basically, I’ve been wondering if there are any oblique links to chronic kidney disease for any members of my family. As I ruminated, one link popped up. One of my daughters has PCOS… and has recently been diagnosed with diabetes… which we know is the primary cause of CKD. Uh-oh. 

Photo by Klaus Nielsen on Pexels.com

Let’s see how this all works. We know that CKD is the progressive decline of your kidney function for at least three months. We know that diabetes is either not producing insulin, which is type 1, or being unable to make use of the insulin you do produce, which is type 2. By the way, I’m type 2 but that was diagnosed many years after the ckd was diagnosed for me. CKD is also a prime cause of diabetes. It works both ways: CKD can cause diabetes and diabetes can cause CKD.  

And PCOS? Each time, my daughter tells me about it I have to ask, “Uh, what is that again?” PCOS is polycystic ovary syndrome. Big help, huh? Thank goodness for a more thorough answer from my old buddy TheMayoClinic: 

“Polycystic ovary syndrome (PCOS) is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. 

The exact cause of PCOS is unknown. Early diagnosis and treatment along with weight loss may reduce the risk of long-term complications such as type 2 diabetes and heart disease.” 

I wondered if my daughter knew something was amiss or if her doctor picked this up, so I did the usual – looked up the symptoms. I found John Hopkins Medicine the most helpful source for this information: 

“The symptoms of PCOS may include: 

Missed periods, irregular periods, or very light periods 

Ovaries that are large or have many cysts 

Excess body hair, including the chest, stomach, and back (hirsutism) 

Weight gain, especially around the belly (abdomen) 

Acne or oily skin 

Male-pattern baldness or thinning hair 

Infertility  

Small pieces of excess skin on the neck or armpits (skin tags) 

Dark or thick skin patches on the back of the neck, in the armpits, and under the breasts” 

Wait a minute. This is not that clear. Where does the insulin part of PCOS come in? That’s what is responsible for diabetes and diabetes is the foremost cause of CKD. Webmd explains: 

“Your body makes hormones to make different things happen. Some affect your menstrual cycle and are tied to your ability to have a baby. The hormones that play a role in PCOS include: 

Androgens. They’re often called male hormones, but women have them, too. Women with PCOS tend to have higher levels. 

Insulin. This hormone manages your blood sugar. If you have PCOS, your body might not react to insulin the way it should. 

Progesterone. With PCOS, your body may not have enough of this hormone. You might miss your periods for a long time or have trouble predicting when they’ll come.” 

Aha! So PCOS interferes with your insulin… which is practically the definition of insulin. MedicalNewsToday confirms this in describing the three major types of diabetes: 

“Type I diabetes: Also known as juvenile diabetes, this type occurs when the body fails to produce insulin. People with type I diabetes are insulin-dependent, which means they must take artificial insulin daily to stay alive. 

Type 2 diabetes: Type 2 diabetes affects the way the body uses insulin. While the body still makes insulin, unlike in type I, the cells in the body do not respond to it as effectively as they once did. This is the most common type of diabetes, according to the National Institute of Diabetes and Digestive and Kidney Diseases, and it has strong links with obesity. 

Gestational diabetes: This type occurs in women during pregnancy when the body can become less sensitive to insulin. Gestational diabetes does not occur in all women and usually resolves after giving birth.” 

Let’s move on to how diabetes can cause CKD, just in case you’ve forgotten. The National Institutes of Diabetes and Digestive and Kidney Diseases, which is part of the National Institutes of Health, which is part of the U.S. Department of Health and Human Services is of service here: 

“High blood glucose, also called blood sugar, can damage the blood vessels in your kidneys. When the blood vessels are damaged, they don’t work as well. Many people with diabetes also develop high blood pressure, which can also damage your kidneys….” 

Remember, it’s your insulin that controls the amount of blood glucose you have. Without producing insulin or if your body doesn’t respond well to insulin, you have diabetes. If you have diabetes your kidneys’ blood vessels may be damaged and you may ‘develop high blood pressure,’ which is a major cause of CKD. 

High blood pressure is actually the second most likely cause of CKD. So, it seems that PCOS can lead to diabetes which may lead to high blood pressure, the latter two both major causes of CKD. It seems to me that I noticed cardiovascular risk can also be associated with PCOS. VeryWellHealth makes it clear how this happens: 

“Having PCOS increases a woman’s chances of getting heart-related complications. 

This is due to the higher levels of insulin that have been associated with PCOS and are known to increase one’s risk for elevated triglycerides, low levels of high-density lipoprotein (HDL), high cholesterol, blood pressure, and atherosclerosis. These conditions can increase your risk for a heart attack and stroke.” 

I wonder if you’ve realized that CKD can also cause heart problems. The Kidney Fund clarifies: 

“The heart and the kidneys work closely together. When there is a problem with one, things can go wrong in the other. Heart disease can cause CKD, and CKD can also cause heart disease. 

When you have heart disease, your heart may not pump blood in the right way. Your heart may become too full of blood. This causes pressure to build in the main vein connected to your kidneys, which may lead to a blockage and a reduced supply of oxygen rich blood to the kidneys. This can lead to kidney disease. 

When the kidneys are not working well, your hormone system, which regulates blood pressure, has to work harder to increase blood supply to the kidneys. When this happens, your heart has to pump harder, which can lead to heart disease.”  

It is all connected. PCOS to diabetes to CKD to heart problems. Before you start to worry, it doesn’t have to be like that. Take care of yourself and prevent the diseases if you can. 

Until next week, 

Keep living your life! 

Cellulitis, CKD, and Diabetes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

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

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

Try these steps to help ease any pain and swelling: 

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

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

Elevate the affected part of your body.” 

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

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

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

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

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

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

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

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

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

Signs and symptoms don’t respond to oral antibiotics 

Signs and symptoms are extensive 

You have a high fever 

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

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

Until next week, 

Keep living your life! (Safely, please) 

 

“klot” + “id”

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

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

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

b: a coagulated mass produced by clotting of blood”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

pain

redness of the skin

warmth of the skin

swelling of the area

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

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

coughing

coughing up blood

dizziness or even fainting

rapid shallow breathing, or tachypnea

rapid heartbeat

irregular heartbeat

shortness of breath”

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

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

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

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

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

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

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

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

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

Lose weight, if you are overweight

Stay active

Exercise regularly; walking is fine

Avoid long periods of staying still

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

Keep It Where It Belongs

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

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

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

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

According to the same study:

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

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

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

2: the toxic bodily condition associated with uremia”

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

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

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

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

Emergency surgery

Emergency surgery carries double the risk of elective surgery.

Wound type

BMI >25

Obese patients are more likely to develop an incisional hernia

Midline incision

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

Wound infection

This increases incisional hernia risk by 68%.

Pre-operative chemotherapy

Intra-operative blood transfusion

Advancing age

Pregnancy

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

It Isn’t Ain’t; It’s AIN.

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

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

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

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

 b: affecting the interstitial tissues of an organ or part“

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

The Dye is Cast

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

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

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

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

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

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

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

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

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

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

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

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

“What is Contrast Induced Nephropathy (CIN)?

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

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

What is Nephrogenic Systemic Fibrosis (NSF)?

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

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

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

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

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

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

Until next week,

Keep living your life!

I’ve Been Compromised

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Autoantibodies: an antibody active against a tissue constituent of the individual producing it

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

Balloon sans Cake or Ice Cream

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

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

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

Information

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

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

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

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

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

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

“When is dialysis needed?

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

How does hemodialysis work?

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

How does the dialyzer clean my blood?

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Good Oils or Bad Oils?

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

 

How Sweet It Isn’t

Hello again. Last week when I was writing about Bipolar Disorder and Chronic Kidney Disease, I mentioned nephrogenic diabetes insipidus. During the week I realized how little I know about that.

Let’s start by going back and reviewing what I wrote last week:

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

Frankly, that’s not enough information for me, although it’s pretty clear. Former English teacher here. Let’s take a look at the words themselves. Keep in mind, this is what I learned along the years.

Nephro = kidneys

Genic = Beginning in

So we know this disease begins in the kidneys. And diabetes? According to Michigan State University at https://www.canr.msu.edu/news/how_diabetes_got_its_name,

“The ancient Greek word for diabetes means, ‘passing though; a large discharge of urine.’ The meaning is associated with frequent urination, which is a symptom of diabetes.”

And finally insipidus. I found myself turning to Wikipedia at https://en.wikipedia.org/wiki/Diabetes_insipidus#:~:text=”Insipidus”%20comes%20from%20Latin%20language,or%20zest%3B%20not%20tasty for help with this.

” ‘Insipidus’ comes from Latin language insipidus (tasteless), from Latin: in- ‘not’ + sapidus ‘tasty’ from sapere ‘have a taste’ — the full meaning is ‘lacking flavor or zest; not tasty’.”

This one I didn’t quite get. Back to the above link to figure out what tasteless has to do with this disease.

“Application of this name to DI arose from the fact that diabetes insipidus does not cause glycosuria (excretion of glucose into the urine).”

Ah, so the urine is not sweet. Reminder: Diabetes can be diagnosed by the doctor tasting the urine. While this was more common in the 1600s, I have read about doctors tasting urine for diabetes more recently and even currently. If the urine is sweet, diabetes is present.

This is interesting. I’d never considered a form of diabetes that didn’t deal with blood glucose, which may also be called blood sugar, so sweet. Of course, I then began to wonder if taking lithium was the only way to develop this disease. The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/diabetes-insipidus/symptoms-causes/syc-20351269#:~:text=Nephrogenic%20diabetes%20insipidus%20occurs%20when,or%20a%20chronic%20kidney%20disorder was quite a bit of help here:

“Nephrogenic diabetes insipidus occurs when there’s a defect in the kidney tubules — the structures in your kidneys that cause water to be excreted or reabsorbed. This defect makes your kidneys unable to properly respond to ADH.

The defect may be due to an inherited (genetic) disorder or a chronic kidney disorder. Certain drugs, such as lithium or antiviral medications such as foscarnet (Foscavir), also can cause nephrogenic diabetes insipidus.”

This is a lot of new information to understand unless we get more help. Let’s take a look at kidney tubules now. I turned to my old favorite Healthline at https://www.healthline.com/health/human-body-maps/kidney#nephrons and found the following:

“Each tubule has several parts:

• Proximal convoluted tubule. This section absorbs water, sodium, and glucose back into the blood.
• Loop of Henle. This section further absorbs potassium, chloride, and sodium into the blood.
• Distal convoluted tubule. This section absorbs more sodium into the blood and takes in potassium and acid.

By the time fluid reaches the end of the tubule, it’s diluted and filled with urea. Urea is byproduct of protein metabolism that’s released in urine.”

That makes sense, but what about this ADH? What is that?  My Health Alberta Ca at https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=hw211268 tells us:

“Antidiuretic hormone (ADH) is a chemical produced in the brain that causes the kidneys to release less water, decreasing the amount of urine produced. A high ADH level causes the body to produce less urine. A low level results in greater urine production.

Normally, the amount of ADH in the body is higher during the night. This helps prevent urination while you are sleeping. But if the levels of ADH remain low during the night, the body will produce large amounts of urine, so urination during the night is more likely.”

We know how you can develop nephrogenic diabetes insipidus, but how do you treat it once you’ve been diagnosed? WebMD at https://www.webmd.com/diabetes/guide/nephrogenic-diabetes-insipidus-symptoms-causes-and-treatments offers us the following:

“If a drug like lithium is responsible, switching medicines might improve nephrogenic diabetes insipidus.

Most adults with nephrogenic diabetes insipidus are able to keep up with fluid losses by drinking water. For some people, though, the symptoms of near-constant thirst and urination can become intolerable. Some treatments can reduce the symptoms of nephrogenic diabetes insipidus, at least somewhat:

• Diet. A low-salt, low-protein diet reduces urine output.
• Nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen (Motrin), indomethacin (Indocin), and naproxen (Naprosyn) also can reduce urination. [Gail here: but as CKD patients, we can’t take NSAIDS.]
• Diuretics. It might seem paradoxical, but “water pills” like hydrochlorothiazide and amiloride can ease excessive urination from nephrogenic diabetes insipidus.

All adults and children with nephrogenic diabetes insipidus should take frequent bathroom breaks. This helps to avoid over-distending the bladder, which can cause long-term problems, though rarely.

The most important treatment for nephrogenic diabetes insipidus is to ensure constant access to lots of water. Not keeping up with fluid losses can lead to dehydration or electrolyte imbalances, which can sometimes be severe. Seek medical help if symptoms don’t improve after rehydrating, eating fresh fruit, and taking a multivitamin.”

Now, the biggie…. Is this rare disease curable? Unfortunately it isn’t, although,

“For individuals with acquired NDI treating the underlying cause (e.g., correcting metabolic imbalances or discontinuing drug use) can reverse the kidneys resistance to vasopressin. [Gail here again: Vasopressin is another name for ADH as far as I can tell.] However, this reversal may take weeks. In some cases caused by the use of drugs such as lithium, it may take years for the kidneys to respond to vasopressin again or it can become irreversible.”

Thank you to National Organization for Rare Diseases (NORD) at https://rarediseases.org/rare-diseases/nephrogenic-diabetes-insipidus/ for the above information.

I feel like I’ve been down the rabbit hole with Alice with all this new information about a rare disease that your already existing kidney disease may cause. Hopefully, you won’t be one of its victims.

Until next week,

Keep living your life!

Bipolar Disorder and Chronic Kidney Disease

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

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

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

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

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

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

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

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

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

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

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

In the July 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!

 

A Different Kind of App

Periodically for the last decade, I’ve written about apps that could help us manage our Chronic Kidney Disease. They would be those with electrolyte counters, portion counters, GFR calculators, and even calorie counters or exercise counters. They were helpful. Some still exist; some have gone by the wayside.

In recent years, I’ve been vocal about the necessity for CKD patients to understand what our disease is, how it came to be, and what we might do about it. This is different from wanting people to be aware of CKD. My contention is that the educated patient is the one most able to help him or herself.

Responsum for CKD does just that, but I’ll let them explain their app themselves. This is from their April 28^th blog at https://responsumhealth.com/great-news-for-the-ckd-community/.

“I have great news to share with Responsum Health’s extended family of supporters and everyone around the world whose lives are affected by kidney disease. Responsum Health, with support from Otsuka Pharmaceutical, is launching a new platform and app designed specifically for people with kidney disease, including chronic kidney disease (CKD)—a condition that affects 37 million Americans.

Responsum for CKD represents our company’s second disease-specific platform—the first being Responsum for PF—and includes some amazing new features. These include a translation function into seven languages and a dynamic social wall called Community Chat, which automatically suggests articles and resources based upon each comment or entry. Just like with pulmonary fibrosis, Responsum for CKD will be available as a free web-based platform and a mobile app for iOS and Android.

We’ve recruited an all-star Content Advisory Council made up of some of the top specialists in CKD to serve as our content validators. Instead of partnering with a specific patient advocacy group to vet our content, we chose this approach to ensure that the platform is free of commercial bias. We will roll out the names of our esteemed council alongside the app launch.

To the CKD community, Responsum Health is on the way! We can’t wait to serve you, join you, learn from you, and listen to you.

Let’s get started!

Andy Rosenberg
Founder and CEO, Responsum Health”

Perhaps we could use a bit more information. Let’s try their May 5^th press release at https://responsumhealth.com/press-and-media/responsum-health-launches-innovative-kidney-disease-information-platform/.

“Responsum Health Launches Innovative Kidney Disease Information Platform
New technology supports patients, families, caregivers, and healthcare professionals

​[WASHINGTON, D.C., May 28 2020] — Today, Responsum Health (Responsum), an innovative developer of personalized patient apps and chronic disease knowledge communities, with support from Otsuka Pharmaceutical, a global healthcare company, announced the launch of an online connection and knowledge platform for patients with kidney disease, such as chronic kidney disease (CKD), a condition that affects an estimated 37 million Americans. The platform, called Responsum for CKD, can be accessed for free via web browser or mobile app.

Designed to meet the needs of patients, families, caregivers, and healthcare professionals, Responsum for CKD offers a number of informational and community-oriented features. At its core, Responsum replaces unreliable web aggregators and social sites by providing patients and caregivers with a customized Newsfeed that has easy-to-read summaries of important kidney health news items. All of the information found on Responsum’s platforms is written by professional health writers and vetted by a team of researchers under the guidance of an advisory council, which is made up of leading kidney health experts.

Other features include a moderated social wall to serve as a community chat room and the Patient One-Sheet, which allows patients to easily collect, download, print, and share their key medical information. Patients will also have access to a robust collection of trusted patient support links.

“We are grateful that Otsuka is willing to support our mission to educate, support, and empower patients with chronic conditions through our unique approach to providing patients with the information they need to drive better outcomes,” said Andrew Rosenberg, founder of Responsum Health. “By working with recognized leaders from the patient advocacy community, we have created a trusted online platform that fills a vital information gap—while simultaneously creating an authentic, welcoming online community for people with kidney disease.”

About Responsum Health

Responsum Health’s mission is to build and support online knowledge communities for chronic disease patients. The company offers a free, revolutionary patient engagement platform that monitors, searches, and curates the Internet to generate a personalized news feed of article summaries, which are vetted by Responsum’s patient group partners. Responsum wraps the news feed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share them with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and support one another through a moderated, disease-specific social wall.”

The one thing that has been missing from other CKD apps is the education. I write to help people become aware of CKD and maybe understand a little bit of what affects you as a CKD patient. Responsum has articles in real time, so to speak. What I mean by that is if you’re interested in potassium and ask a question in the community about it, you also have articles attached that will explain more about your topic: no searching, no delay, just click on the upper right hand corner. How marvelous.

I think I’ve mentioned that I’ve been involved in what we used to call think tanks about what CKD patients need. My answer has always been education… and what could be better than immediate education? The one sheet with your medical information is also a boon, but not specific to only this app.

But the community with instant articles about your topic? Priceless. I would say that it’s free is also priceless, but that’s a little bit obvious. Do I recommend this app? Yes. Do I use this app? Yes… and if asked my opinion, I would say you should use it, too. The key to our kidney health just may be self-education.

Until next week,

Keep living your life!

Echo… Echo… Echo…

Remember that golden time I’ve mentioned before? The time when I problem solve and write in my head just as I’m waking up? Well, today the word was echo at that time. Echo? As in echo chamber? Echo Canyon? No, doesn’t feel right. Got it! Echocardiogram.

The English teacher in me is already delighted. Why? I know what most of the word means through my college study of Greek and Latin roots. Card means heart, io is simply a connective, and gram means write. What about echo you ask? I think we all know what that means in common usage, but in conjunction with cardiogram? Yep, time for some help.

The Merriam-Webster Dictionary, still my favorite, at https://www.merriam-webster.com/dictionary/ echocardiography tells us an echocardiogram is,

“the use of ultrasound to examine the structure and functioning of the heart for abnormalities and disease”

Let’s put in a little reminder of what an ultrasound is here. This is from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5897:

“A test in which high-frequency sound waves (ultrasound) are bounced off tissues and the echoes are converted into a picture (sonogram).”

Oh, like the picture of my grandson growing in his mom’s womb. Great, now what does this have to do with Chronic Kidney Disease? I just had an echocardiogram because my oncologist was concerned about the great distance between my diastolic (lower) and systolic (upper) numbers on my blood pressure readings. It was fine, but it did get me to thinking about what CKD and the heart have in common.

Here’s a reminder from Healthline at https://www.healthline.com/health/diastole-vs-systole#:~:text=Your%20systolic%20blood%20pressure%20is,bottom%20number%20on%20your%20reading of what the two numbers mean:

“Your systolic blood pressure is the top number on your reading. It measures the force of blood against your artery walls while your ventricles — the lower two chambers of your heart — squeeze, pushing blood out to the rest of your body.

Your diastolic blood pressure is the bottom number on your reading. It measures the force of blood against your artery walls as your heart relaxes and the ventricles are allowed to refill with blood. Diastole — this period of time when your heart relaxes between beats — is also the time that your coronary artery is able to supply blood to your heart.”

Got it. This next quote is a little medicalese, but basically it’s saying there are specific difficulties if you have both CKD and high blood pressure. It’s from Kidney International at https://www.kidney-international.org/article/S0085-2538(19)30276-5/fulltext :

“In CKD and ESKD, risk factors for HF include long-standing hypertension with often worsened blood pressure (BP) control as CKD worsens, salt and water retention causing excessive preload, and cardiomyopathic factors including left ventricular (LV) hypertrophy and fibrosis. In addition, there are CKD- and ESKD-specific factors that affect afterload (increased arterial stiffness and high output shunting through arteriovenous fistulae or grafts) as well as load-independent factors (neurohormonal activation, impaired iron utilization, anemia, demand ischemia, profibrotic factors [e.g., fibroblast growth factor 23 {FGF-23}], inflammation, etc.)…. Arteriovenous fistulae or grafts have been reported to worsen right ventricular hypertrophy, increase pulmonary pressures, associate with significant right ventricular dilatation, and reduce right ventricular function, which are closely linked to survival….”

An echocardiogram can show in real time if all the ventricles of your heart are working correctly as far as pumping blood and and/or leaking when your heart should be at rest.

Well, why get an echocardiogram if you already know you have CKD and high blood pressure? Here’s WebMD at https://www.webmd.com/heart-disease/guide/diagnosing-echocardiogram#4’s response.  You can find much more information there, too, as is true of all the sites mentioned.

“An echocardiogram can help your doctor diagnose several kinds of heart problems, including:

• An enlarged heart or thick ventricles (the lower chambers)
• Weakened heart muscles
• Problems with your heart valves
• Heart defects that you’ve had since birth
• Blood clots or tumors”

Mayo Clinic at https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856 offers an easily understandable explanation of the actual process. There are many types of echocardiograms, but this is the most usual.

“Transthoracic echocardiogram

In this standard type of echocardiogram:

• A technician (sonographer) spreads gel on a device (transducer).
• The sonographer presses the transducer firmly against your skin, aiming an ultrasound beam through your chest to your heart.
• The transducer records the sound wave echoes from your heart.
• A computer converts the echoes into moving images on a monitor.”

This is yet another reminder of why we need to have both the heart and kidneys functioning well. This one is from Heart.org at https://www.heart.org/en/health-topics/high-blood-pressure/health-threats-from-high-blood-pressure/how-high-blood-pressure-can-lead-to-kidney-damage-or-failure#:~:text=The%20:

• “Damaged kidney arteries do not filter blood well. Kidneys have small, finger-like nephrons that filter your blood. Each nephron receives its blood supply through tiny hair-like capillaries, the smallest of all blood vessels. When the arteries become damaged, the nephrons do not receive the essential oxygen and nutrients — and the kidneys lose their ability to filter blood and regulate the fluid, hormones, acids and salts in the body.
• Damaged kidneys fail to regulate blood pressure. Healthy kidneys produce a hormone called aldosterone to help the body regulate blood pressure. Kidney damage and uncontrolled high blood pressure each contribute to a negative spiral. As more arteries become blocked and stop functioning, the kidneys eventually fail.”

The American Journal of Kidney Disease at https://www.ajkd.org/article/S0272-6386(18)30598-5/fulltext gives us these final words on why an echocardiogram could be necessary for certain CKD patients:

“Abnormal cardiac structure and function are common in chronic kidney disease (CKD) and end-stage renal disease (ESRD) and linked with mortality and heart failure.”

Topic change: We tried Flavis’s high protein spaghetti and found it just as light and delightful as their penne. This, I can endorse.

Oh, before I forget. I like to read… a lot. One of the books I read recently was Ray Flynt’s Transplanted Death. I don’t want to tell you too much about it, except that it is a well-written murder mystery with a good story that revolves around transplant recipients, two of them kidney recipients. I am recommending this book.

Until next week,

Keep living your life!

It’s Not Your Hands and Feet; It’s Your Brain.

Here I sit feeling so incredibly pleased that I don’t have pancreatic cancer anymore. Yet, at the same time, I’m so very displeased with the neuropathy that has me using a cane and causing my fingers to hit between the keys on the keyboard instead of on them. I’ve already mentioned in a previous blog that this is a brain connection problem. Today, I’d like to explore that more.

Let’s start with something simple before we wade into what I suspect is going to be complex. Lexico’s English Dictionary at https://www.lexico.com/en/definition/neuropathy tells us neuropathy is,

“Disease or dysfunction of one or more peripheral nerves, typically causing numbness or weakness.”

I get the numbness or weakness, but what are peripheral nerves? I went to WebMD at https://www.webmd.com/brain/understanding-peripheral-neuropathy-basics#1 for help.

“The name of the condition tells you a bit about what it is:

Peripheral: Beyond (in this case, beyond the brain and the spinal cord.)
Neuro-: Related to the nerves
-pathy: Disease

Peripheral neuropathy refers to the conditions that result when nerves that carry messages to and from the brain and spinal cord from and to the rest of the body are damaged or diseased.

The peripheral nerves make up an intricate network that connects the brain and spinal cord to the muscles, skin, and internal organs. Peripheral nerves come out of the spinal cord and are arranged along lines in the body called dermatomes. Typically, damage to a nerve will affect one or more dermatomes, which can be tracked to specific areas of the body. Damage to these nerves interrupts communication between the brain and other parts of the body and can impair muscle movement, prevent normal sensation in the arms and legs, and cause pain.”

Let’s see if we can find out what these nerves are. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/14737-neuropathy has an easily understood answer for us,

“The peripheral nervous system is made up of three types of nerves, each with an important role in keeping your body healthy and functioning properly.

• Sensory nerves carry messages from your five senses (sight, hearing, smell, taste, touch) through your spinal cord to your brain. For example, a sensory nerve would communicate to your brain information about objects you hold in your hand, like pain, temperature, and texture.
• Motor nerves travel in the opposite direction of sensory nerves. They carry messages from your brain to your muscles. They tell your muscles how and when to contract to produce movement. For example, to move your hand away from something hot.
• Autonomic nerves are responsible for body functions that occur outside of your direct control, such as breathing, digestion, heart rate, blood pressure, sweating, bladder control and sexual arousal. The autonomic nerves are constantly monitoring and responding to external stresses and bodily needs. For instance, when you exercise, your body temperatures increases. The autonomic nervous system triggers sweating to prevent your body’s temperature from rising too high.

The type of symptoms you feel depend on the type of nerve that is damaged.”

Now the biggie: What causes neuropathy? MedicineNet at https://www.medicinenet.com/peripheral_neuropathy/article.htm was right there with an answer.

1. “Diabetes mellitus
2. Shingles (post herpetic neuralgia)
3. Vitamin deficiency, particularly B12 and folate
4. Alcohol
5. Autoimmune diseases, including lupus, rheumatoid arthritis or Guillain-Barre syndrome
6. AIDS, whether from the disease or its treatment, syphilis, and kidney failure
7. Inherited disorders, such as amyloid polyneuropathy or Charcot-Marie-Tooth disease
8. Exposure to toxins, such as heavy metals, gold compounds, lead, arsenic, mercury, and organophosphate pesticides
9. Cancer therapy drugs such as vincristine (Oncovin and Vincasar) and other medications, such as antibiotics including metronidazole (Flagyl) and isoniazid
10. Rarely, diseases such as neurofibromatosis can lead to peripheral neuropathy. Other rare congenital neuropathies include Fabry disease, Tangier disease, hereditary sensory autonomic neuropathy, and hereditary amyloidosis.
11. Statin medications have been linked to peripheral neuropathy, although neuropathy caused by statins only rarely causes symptoms.

While diabetes and postherpetic neuralgia are the most common causes of peripheral neuropathy, oftentimes no cause is found. In these situations, it is referred to as idiopathic peripheral neuropathy.”

Uh-oh, diabetes, Vitamin B12 deficiency, cancer therapy drugs, antibiotics, and statins. Any of these could have caused my neuropathy. Since many Chronic Kidney Disease patients develop diabetes (which is also the foremost cause of CKD), you need to keep your eyes open for the symptoms.

Of course, knowing the symptoms would be helpful. The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/peripheral-neuropathy/symptoms-causes/syc-20352061 explains:

“Signs and symptoms of peripheral neuropathy might include:

• Gradual onset of numbness, prickling or tingling in your feet or hands, which can spread upward into your legs and arms
• Sharp, jabbing, throbbing or burning pain
• Extreme sensitivity to touch
• Pain during activities that shouldn’t cause pain, such as pain in your feet when putting weight on them or when they’re under a blanket
• Lack of coordination and falling
• Muscle weakness
• Feeling as if you’re wearing gloves or socks when you’re not
• Paralysis if motor nerves are affected

If autonomic nerves are affected, signs and symptoms might include:

• Heat intolerance
• Excessive sweating or not being able to sweat
• Bowel, bladder or digestive problems
• Changes in blood pressure, causing dizziness or lightheadedness”

Treatment may be any number of things. Medical News Today at https://www.medicalnewstoday.com/articles/147963#treatment elucidates for us:

“Treatment either targets the underlying cause, or it aims to provide symptomatic pain relief and prevent further damage.

In the case of diabetic neuropathy, addressing high blood sugars can prevent further nerve damage.

For toxic causes, removing the exposure to a suspected toxin, or stopping a drug, can halt further nerve damage.

Medications can relieve pain and reduce burning, numbness, and tingling.

Drug treatment for neuropathic pain

Medications that may help include:

• drugs normally used for epilepsy, such as carbamazepine
• antidepressants, such as venlafaxine
• opioid painkillers, for example, oxycodone or tramadol

Opioid painkillers come with warnings about safety risks.

Duloxetine may help people with chemotherapy-induced neuropathy.

Doctors can also prescribe skin patches, such as Lidoderm, for temporary, localized pain relief. This contains the local anesthetic lidocaine. The patches are like bandages, and they can be cut to size.

The choice of drug should take into account medications for other conditions, to avoid unwanted interactions.”

Before I close, do you remember my writing about Flavis’s low protein products? We combined their penne with Bear’s signature ground turkey spaghetti sauce and it was exquisite. I’m not one for heavy pasta, so I really liked how light and delicate it tasted.

Until next week,

Keep living your life!

Two or More

Time for another reader question, but first, let’s pay attention to what day today is. Many people see today as the day for bar-b-ques or backyard ball games (or, at least, they did before Covid 19). When I married Bear a little more than seven years ago, he explained about Memorial Day. I knew it was to honor those who died protecting us, but it was so much more meaningful when explained by a veteran… someone who didn’t die protecting us and lived on to meet me and marry me. So give some quiet thoughts to these men and woman today, will you?

Now, the question. This reader has both lupus like immune mediated glomerular nephritis and Wegeners vasculitis with kidney involvement. Her question is how does she handle both?  And, here I thought I had it bad with pancreatic cancer (now gone), Chronic Kidney Disease, diabetes, and a whole host of what I consider lesser diseases!

Starting slowly is a must here since I am like a fish out of water with these two diseases. According to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088,

”Granulomatosis with polyangiitis is an uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys.

Formerly called Wegener’s granulomatosis, this condition is one of a group of blood vessel disorders called vasculitis. It slows blood flow to some of your organs. The affected tissues can develop areas of inflammation called granulomas, which can affect how these organs work.

Early diagnosis and treatment of granulomatosis with polyangiitis might lead to a full recovery. Without treatment, the condition can be fatal.”

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4757-granulomatosis-with-polyangiitis-gpa-formerly-called-wegeners/management-and-treatment tells us,

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

Okay, got it. Now let’s take a look at lupus like immune mediated glomerular nephritis. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064 reminds us about lupus:

“Lupus: A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system. The first symptom is a red (or dark), scaly rash on the nose and cheeks, often called a butterfly rash because of its distinctive shape. As inflammation continues, scar tissue may form, including keloid scarring in patients prone to keloid formation. The cause of lupus is unknown, although heredity, viruses, ultraviolet light, and drugs may all play a role. Lupus is more common in women than in men, and although it occurs in all ethnic groups, it is most common in people of African descent. Diagnosis is made through observation of symptoms, and through testing of the blood for signs of autoimmune activity. Early treatment is essential to prevent progression of the disease. A rheumatologist can provide treatment for lupus, and this treatment has two objectives: treating the difficult symptoms of the disease and treating the underlying autoimmune activity. It may include use of steroids [Gail here: Remember they’re used in treating this reader’s other disease, too.] and other anti-inflammatory agents, antidepressants and/or mood stabilizers, intravenous immunoglobulin, and, in cases in which lupus involves the internal organs, chemotherapy.”

But our reader has lupus LIKE immune mediated glomerular nephritis, so she may need to deal with the symptoms, but not the treatment. Wikipedia at https://en.wikipedia.org/wiki/Immune-mediated_inflammatory_diseases informs us,

“An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.”

That’s as close as I could get to the definition of immune mediated.  We know that glomerular means of or about the glomerulus. Dictionary.com at https://www.dictionary.com/browse/glomerular helped me out here:

“Also called Malpighian tuft. a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”

And nephritis? After a decade of writing this blog, we probably all know that’s an inflammation of the nephrons.

Let’s combine the pieces to see what we get.  The nephron’s glomeruli are inflamed in the same way lupus inflames the organs. Remember that GPA also causes inflammation. (By the way, this is the perfect point in the blog to remind you I am not a doctor and have never claimed to be one.)

But how is it treated? Here’s where I admit defeat. There is quite a bit of information available on Lupus, Lupus Nephritis, and the like. But I could not find anything that includes ‘Lupus like.’

The commonality between the two diseases seems to be inflammation. But isn’t that at the root of all Chronic Kidney Disease? I admit to being surprised twice while writing this particular blog:

• GPA was called by its older name by the doctor.
• The dearth of treatment information for lupus like immune mediated glomerular nephritis.

Until next week,

Keep living your life!

D’immunity

I can just see your faces now. Huh? What is that? The concept makes sense, but the word doesn’t. Do you remember my mentioning that one of the joys of being a writer is that you make up words? Well, that’s one I made up right after my doctor talked with me about vitamin D and immunity. He was talking about warding off a reoccurrence of cancer, but when I started researching I found that it has to do with all immunity.

Wait a minute. Just as I keep reminding you that I’m not a doctor and never claimed to be one, it’s important you realize that when I use the word ‘research,’ I mean searching the web and whatever journals or texts I have available. I am not a researcher in the true sense of the word. My favorite dictionary, The Merriam-Webster at https://www.merriam-webster.com/dictionary/research can help us out here:

“1: careful or diligent search

2: studious inquiry or examination especially : investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws

3: the collecting of information about a particular subject”

(‘Er’ is a suffix that means ‘one who,’ so a researcher is one who researches.) Most of us think of a researcher as the second definition. I think of myself as the third definition.

Okay, now that’s cleared up let’s get back to the miraculous vitamin D and your immunity. ScienceDaily at https://www.sciencedaily.com/releases/2019/04/190417111440.htm tells us,

“The University of Edinburgh team focused on how vitamin D affects a mechanism in the body’s immune system — dendritic cells’ ability to activate T cells.

In healthy people, T cells play a crucial role in helping to fight infections. In people with autoimmune diseases, however, they can start to attack the body’s own tissues.

By studying cells from mice and people, the researchers found vitamin D caused dendritic cells to produce more of a molecule called CD31 on their surface and that this hindered the activation of T cells.

The team observed how CD31 prevented the two cell types from making a stable contact — an essential part of the activation process — and the resulting immune reaction was far reduced.

Researchers say the findings shed light on how vitamin D deficiency may regulate the immune system and influence susceptibility to autoimmune diseases.

The study, published in Frontiers in Immunology, was funded by the Medical Research Council, Biotechnology and Biological Sciences Research Council, Natural Environment Research Council and Wellcome.”

If you’re like me, you’ll need help with some of these terms.

Dendritic cells are:

“a branching cell of the lymph nodes, blood, and spleen that functions as a network trapping foreign protein,”

according to Dictionary.com at https://www.dictionary.com/browse/dendritic-cell.

Let’s take a look at T cells now. I was comfortable with MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=11300’s definition:

“T cell: A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body’s immune response to specific pathogens. The T cells are like soldiers who search out and destroy the targeted invaders.

Immature T cells (termed T-stem cells) migrate to the thymus gland in the neck, where they mature and differentiate into various types of mature T cells and become active in the immune system in response to a hormone called thymosin and other factors. T-cells that are potentially activated against the body’s own tissues are normally killed or changed (“down-regulated”) during this maturational process.”

I’m sure my doctor had been telling me about this during the course of my treatment, but last week – now that I’ve been declared cancer free – immunity became a big issue to me and I finally listened with both ears. Maybe you should, too, since we’re in the middle of the Corona Virus Pandemic.

Let’s get some more information about vitamin D and your immunity. Healthline at https://www.healthline.com/nutrition/vitamin-d-coronavirus#effect-on-immune-health gives us another view of vitamin D and the immune system:

“Vitamin D is necessary for the proper functioning of your immune system, which is your body’s first line of defense against infection and disease.

This vitamin plays a critical role in promoting immune response. It has both anti-inflammatory and immunoregulatory properties and is crucial for the activation of immune system defenses ….

Vitamin D is known to enhance the function of immune cells, including T-cells and macrophages, that protect your body against pathogens….

In fact, the vitamin is so important for immune function that low levels of vitamin D have been associated with an increased susceptibility to infection, disease, and immune-related disorders ….

For example, low vitamin D levels are associated with an increased risk of respiratory diseases, including tuberculosis, asthma, and chronic obstructive pulmonary disease (COPD), as well as viral and bacterial respiratory infections….

What’s more, vitamin D deficiency has been linked to decreased lung function, which may affect your body’s ability to fight respiratory infections….”

I caught a word or two in that explanation that we may need defined.

Vocabulary.com at https://www.vocabulary.com/dictionary/pathogen informs us that a pathogen is,

“… is a tiny living organism, such as a bacterium or virus, that makes people sick. Washing your hands frequently helps you avoid the pathogens that can make you sick.”

How about macrophages? I went to News Medical Life Sciences at for their definition.

“Macrophages are important cells of the immune system that are formed in response to an infection or accumulating damaged or dead cells. Macrophages are large, specialized cells that recognize, engulf and destroy target cells. The term macrophage is formed by the combination of the Greek terms “makro” meaning big and “phagein” meaning eat.”

This must be what my doctor was talking about re cancer.

On another note: I am 73, still undergoing chemotherapy, and have Chronic Kidney Disease. Please be kind to me and others like me by wearing your mask, even if you hate it or think it makes you look weak. You could be saving my life.

Until next week,

Keep living your life!

I Never Knew

I’ve already mentioned that I read a lot while undergoing chemotherapy for my pancreatic cancer. I don’t have the energy for much else, although I do find my energy slowly increasing day by day. Often, I come across words or terms that are new to me as I read. One such term is ‘hypertensive nephrosclerosis.’ That’s a mouthful, so let’s start slowly.

‘Hypertensive’ is not a problem since we know that hyper means,

“hyper– a prefix appearing in loanwords from Greek, where it meant “over,” usually implying excess or exaggeration (hyperbole); on this model used, especially as opposed to hypo-, in the formation of compound words (hyperthyroid).”

Thank you, Dictionary.com at https://www.dictionary.com/browse/hyper-. A little reminder: a prefix is a group of letters added at the beginning of a word which changes its meaning. Aren’t you glad I was an English teacher for over forty years?

You’ve probably already figured out that ‘tensive’ has to do with some kind of tension. According to Dictionary.com again, but this time at https://www.dictionary.com/browse/tensive?s=ts, it means,

“adjective

stretching or straining”

That is a sort of tension, so you’re right. Add the prefix to the root word and suffix and you get ‘hypertension.’ Maybe a little grammar lesson would help here. A suffix is a group of letters added at the end of a word that change its meaning by expressing tendency, disposition, function, connection, etc. (By the way, some of this was taken from – yep – Dictionary.com again. This time at https://www.dictionary.com/browse/-ive?s=t.) What else? Oh, yes, ‘root.’ That’s the main part of the word; in this word, it’s tens. I know, I know, you didn’t come here for a grammar lesson.

Good thing ‘nephrosclerosis’ is a compound word. We know all about ‘nephro’ since it means kidney. And ‘sclerosis?’ That means hardening. This is a good point to mention this can be fatal. A former colleague recently died of sclerosis.

So ‘nephrolsclerosis’ is a hardening of the kidneys. Let’s check that out just to be sure. According to MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=4533:

 Nephrosclerosis: A progressive disease of the kidneys that results from sclerosis (hardening) of the small blood vessels in the kidneys. Nephrosclerosis is most commonly associated with hypertension or diabetes and can lead to kidney failure.

With me so far? Just one more step, let’s add ‘hypertensive’ to ‘nephrosclerosis.’ Emedicine at https://emedicine.medscape.com/article/244342-overview tells us,

“The term hypertensive nephrosclerosis has traditionally been used to describe a clinical syndrome characterized by long-term essential hypertension, hypertensive retinopathy, left ventricular hypertrophy, minimal proteinuria, and progressive renal insufficiency. Most cases are diagnosed based solely on clinical findings….”

Okay, let’s break down the definition of what we just added together to understand this term. You already know what ‘hypertension’ and ‘proteinuria’ are from reading my blogs. If you forgot, use the click throughs in the above definition. That leaves ‘hypertensive retinopathy’ and ‘left ventricular hypertrophy’ since we also know what ‘progressive renal insufficiency’ is.

‘Hypertensive retinopathy’ is summarized by DoveMed, a new site for me whose stated mission is

“We provide reliable unbiased medical information to healthcare consumers and providers by leveraging our unique ecosystem of world class products and services.”

at https://www.dovemed.com/article-synonyms/stage-4-hypertensive-retinopathy/ in this manner:

• “Hypertensive Retinopathy (HR) refers to abnormal changes of the retina that is located in the back of the eye, due to chronic hypertension (high blood pressure)
• The retinal arteries are autoregulated, meaning they can control their own shape based on changes in systemic blood pressure. However, at extremely high blood pressures, such as a blood pressure of 140/110 mmHg or over, they are unable to autoregulate. This can result in retinal complications
• Depending on the severity of the signs and symptoms, Hypertensive Retinopathy can be classified to 4 stages – stage 1, 2, 3, and 4. Stage 1 Hypertensive Retinopathy has mild signs and symptoms, whereas Stage 4 Hypertensive Retinopathy has severe signs and symptoms
• These changes typically occur in individuals who have had very high blood pressure for several years. The signs and symptoms of Hypertensive Retinopathy may include leakage of fats from the blood vessels, retinal edema (fluid in the retina), and swelling of the optic nerves
• Some of the complications can include lack of oxygen delivered to the retina, as well as swelling of the macula and optic nerve that can result in the vision being affected
• The treatment typically consists of controlling systemic hypertension with medications. Prognosis is generally good for individuals with stage 1 or 2 Hypertensive Retinopathy”

That leaves ‘left ventricular hypertrophy.’ Have no fear! The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314 is here to help us out:

“Left ventricular hypertrophy is enlargement and thickening (hypertrophy) of the walls of your heart’s main pumping chamber (left ventricle).

Left ventricular hypertrophy can develop in response to some factor — such as high blood pressure or a heart condition — that causes the left ventricle to work harder. As the workload increases, the muscle tissue in the chamber wall thickens, and sometimes the size of the chamber itself also increases. The enlarged heart muscle loses elasticity and eventually may fail to pump with as much force as needed.

Left ventricular hypertrophy is more common in people who have uncontrolled high blood pressure. But no matter what your blood pressure is, developing left ventricular hypertrophy puts you at higher risk of a heart attack and stroke.

Treating high blood pressure can help ease your symptoms and may reverse left ventricular hypertrophy.”

Adding all this information together, it’s clear that hypertensive blood pressure is going to do you no good in any way. So what do we do to avoid high blood pressure? That’s right! And the CDC backs you up. Take a look at https://www.cdc.gov/bloodpressure/prevent.htm.

“Prevent High Blood Pressure

….Eat a Healthy Diet

Choose healthy meal and snack options to help you avoid high blood pressure and its complications. Be sure to eat plenty of fresh fruits and vegetables.

Talk with your health care team about eating a variety of foods rich in potassium, fiber, and protein and lower in salt (sodium) and saturated fat. For many people, making these healthy changes can help keep blood pressure low and protect against heart disease and stroke.

The DASH (Dietary Approaches to Stop Hypertension) eating plan is a healthy diet plan with a proven record of helping people lower their blood pressure….

Visit the CDC’s Nutrition, Physical Activity, and Obesity website to learn more about healthy eating and nutrition.

Keep Yourself at a Healthy Weight

Having overweight or obesity increases your risk for high blood pressure. To determine whether your weight is in a healthy range, doctors often calculate your body mass index (BMI). If you know your weight and height, you can calculate your BMI at CDC’s Assessing Your Weight website. Doctors sometimes also use waist and hip measurements to assess body fat.

Talk with your health care team about ways to reach a healthy weight, including choosing healthy foods and getting regular physical activity.

Be Physically Active

Physical activity can help keep you at a healthy weight and lower your blood pressure. The Physical Activity Guidelines for Americans recommends that adults get at least 2 hours and 30 minutes of moderate-intensity exercise, such as brisk walking or bicycling, every week. That’s about 30 minutes a day, 5 days a week. Children and adolescents should get 1 hour of physical activity every day.

Visit the website for CDC’s Division of Nutrition, Physical Activity, and Obesity to learn about ways you can be physically active.

Do Not Smoke

Smoking raises your blood pressure and puts you at higher risk for heart attack and stroke. If you do not smoke, do not start. If you do smoke, quitting will lower your risk for heart disease. Your doctor can suggest ways to help you quit.

For more information about tobacco use and quitting, see CDC’s Smoking and Tobacco Use Web site.

Limit How Much Alcohol You Drink

Do not drink too much alcohol, which can raise your blood pressure. Men should have no more than 2 alcoholic drinks per day, and women should have no more than 1 alcoholic drink per day. Visit the CDC’s Alcohol and Public Health website for more information.

Get Enough Sleep

Getting enough sleep is important to your overall health, and enough sleep is part of keeping your heart and blood vessels healthy. Not getting enough sleep on a regular basis is linked to an increased risk of heart disease, high blood pressure, and stroke…. Visit CDC’s Sleep and Sleep Disorders website for resources on how to get better sleep.”

Until next week,

Keep living your life!

Kidney Healthy Food Labels?

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

“Redesign Dialysis Phase II

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

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

Who Can Participate?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Here is the link to the survey:

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

 

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

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

Until next week,

Keep living your life!

Allow Me to Introduce You…

We all know I’m not the only one raising awareness about Chronic Kidney Disease. I’ve posted guest blogs from other writers, those who bring our plight to the attention of the government, manufacturers of products that may help us, and patients and/or donors themselves. But I realize I’m ‘old school.’ There are those who are more comfortable with other forms of social media, such as broadcasting shows. Hopefully, you haven’t seen the two YouTubes I created years ago. For an actor, they are awful. Others are doing a much better job of broadcasting than I can.

One such person is Steve L. Belcher. After I realized I’ve been seeing his name again and again on Facebook, I decided to ask him to guest blog. I certainly learned a lot from his blog and I hope you do, too. This is not a competition among Chronic Kidney Disease awareness advocates, but an informal coalition. We all want you to know as much as you can about this disease we share. Steve’s blog explains the background for all the shows he broadcasts. Kudos, my friend, kudos.

“Urban Kidney Alliance, Inc. was founded and created September 2014 as a 501 (c) (3) grassroots nonprofit [Gail here. This has to do with restrictions on lobbying rights.] by Steve L. Belcher, RN, MSN, MS – a former dialysis nurse clinician – as a result of witnessing the lack of resources for kidney patients dialyzing in renal treatment facilities located in urban communities. Many patients undergoing kidney dialysis from urban communities are forced to make hard decisions between purchasing lifesaving medications or food to feed themselves or family members. Urban Kidney Alliance, Inc. initially assisted patients with financial needs for medications, transportation to and from treatment, utilities, and communication devices. Due to the enormous cost of assisting patients and lack of donations, Urban Kidney Alliance could no longer operate under this operational concept.

At this juncture Urban Kidney Alliance, Inc. decided to refocus its mission towards kidney disease education, collaboration, and advocacy. Urban Kidney Alliance, Inc. believes refocusing their mission will have a better impact on reaching communities and individuals at-risk for chronic kidney disease. Urban Kidney Alliance, Inc.’s goal is to reach three million people with their message of kidney disease awareness.

Before the inception of Urban Health Outreach, there was Urban Renal Talk with Tamika & Steve. On October, 2017, Tamika Ganues joined Urban Kidney Alliance, Inc. as Vice President of Operations. During our early beginnings, we began broadcasting Urban Renal Talk with Tamika and Steve from our cellphones to our Facebook Page. The Urban Renal Talk with Tamika and Steve broadcast was created to interview kidney patients and professionals making a difference in the chronic kidney disease community. Since the beginning Urban Renal Talk with Tamika and Steve has come a long way with over four hundred broadcast shows to date. Our shows consist of digital broadcasting, which is the distribution of audio or video content to a dispersed audience via any electronic mass communication medium.

As a result of the overwhelming positive response to Urban Renal Talk with Tamika & Steve, we decided to create a second show directed towards the transplant community called Sunday Morning Transplant Coffee. However, this wasn’t always the case. Our viewership began slowly. Many people haven’t heard of our show and the work we were doing to raise kidney disease awareness and education. The majority of our guests in the beginning were patients sharing their struggles and triumphs with kidney disease. As we began to be consistent with our shows, we were able to schedule and confirm professional guests on the show. Sunday Morning Transplant Coffee Talk was broadcast every Sunday from 11:00 am – 12:00 pm EDT and interviewed guests who were either transplant recipients, transplant donors, or had received a transplant which was later rejected.

January 2019 was the launch and creation of the Urban Health Outreach Media Network on Facebook, a subsidiary of Urban Kidney Alliance, Inc. Urban Health Outreach Media was created to be an online kidney disease education and awareness media broadcasting company to reach more people at-risk and affected by kidney disease globally. Currently, Urban Health Outreach Media broadcasts five shows during the week. The shows are:

The Lisa Baxter Show Sunday 8:00 PM – 8:30 PM

World Kidney News Sunday 9:00 PM – 10:00 PM

Smashing Kidney Disease Tuesday 8:00 PM – 9:00 PM

Warriors Quest Wednesday 8:30 PM – 9:30 PM

Urban Renal Talk with Tamika & Steve Thursday 9:00 PM – 10:00 PM

Kidney Stories 2 first and last Friday of each month from 8:00 PM -9:00 PM EST.

Each show has its own unique style and approach to addressing kidney disease. For example, Warriors Quest gives kidney patients seeking a living kidney donor transplant the opportunity to share their story and transplant hospital information in hopes of finding a donor.

We felt there was a need to create these shows to address the many aspects of kidney disease and the comorbidities associated with it such as diabetes and hypertension. Social media has become a focal point for millions of people to interact and socialize with each other across the country. Urban Kidney Alliance, Inc. wanted to draw on this population with the multiple shows. In addition, the multiple kidney disease groups on Facebook give us another way to disseminate our patient education to patients who undergo in center hemodialysis, home hemodialysis, peritoneal dialysis, and transplantation. Since the start of Urban Health Outreach Media, the shows have lived up to our expectations, yet we still have a long way to go. We measure the success of our shows by the increase in viewership over time.

The author Steve L. Belcher, RN, MSN, MS, DN-CM [Me again: This means Delegating Nurse/Case Manager.], has been affiliated with the kidney dialysis industry for over thirty-three years. He began his career in 1985 as a Patient Care Technician, and – in 1996 – started his career as a Dialysis Staff Nurse. In addition, Steve has worked at many dialysis clinics throughout the United States as a Dialysis Travel Nurse. Today, Steve L. Belcher, RN is the Executive Director of Urban Kidney Alliance, Inc. and resides in Washington, D.C.”

Steve, I salute you for all you do to bring CKD awareness to the rest of us. Thank you.

Saving CKD Lives

Last week, I wrote about Covid-19 and a little about precautions explaining why we – as Chronic Kidney Disease patients – need to take extra care. A reader in Ireland was shocked that this was all we had in the way of protecting ourselves (as much as possible) from contacting the virus here in the United States. The precautions weren’t that much different than the precautions for everyone else.

There are a few things going on here. First is that we have no leadership from Mr. Trump who seems to have decided this is not his responsibility. That leaves us with the governors of each of the fifty United States and, in some cases, the mayors of individual cities in each of these states to lead us. They may have very different ideas.

There is this post I found on Facebook that exemplifies our situation in the U.S. Unfortunately, it is not attributed to anyone. I would love to give credit where credit is due.

“WE ARE NOT IN THE SAME BOAT …

I heard that we are all in the same boat, but it’s not like that. We are in the same storm, but not in the same boat. Your ship could be shipwrecked and mine might not be. Or vice versa.

For some, quarantine is optimal. A moment of reflection, of re-connection, easy in flip flops, with a cocktail or coffee. For others, this is a desperate financial & family crisis.

For some that live alone they’re facing endless loneliness. While for others it is peace, rest & time with their mother, father, sons & daughters.

With the $600 weekly increase in unemployment some are bringing in more money to their households than they were working. Others are working more hours for less money due to pay cuts or loss in sales.

Some families of 4 just received $3400 from the stimulus while other families of 4 saw $0.

Some were concerned about getting a certain candy for Easter while others were concerned if there would be enough bread, milk and eggs for the weekend.

Some want to go back to work because they don’t qualify for unemployment and are running out of money. Others want to kill those who break the quarantine.

Some are home spending 2-3 hours/day helping their child with online schooling while others are spending 2-3 hours/day to educate their children on top of a 10-12 hour workday.

Some have experienced the near death of the virus, some have already lost someone from it and some are not sure if their loved ones are going to make it. Others don’t believe this is a big deal.

Some have faith in God and expect miracles during this 2020. Others say the worst is yet to come.

So, friends, we are not in the same boat. We are going through a time when our perceptions and needs are completely different.

Each of us will emerge, in our own way, from this storm. It is very important to see beyond what is seen at first glance. Not just looking, actually seeing.

We are all on different ships during this storm experiencing a very different journey.”

Let’s take a look at the Chronic Kidney Disease boat to see what I can find out for us. I immediately went to the National Kidney Foundation at https://www.kidney.org/coronavirus/kidney-disease-covid-19. If you’ve read last week’s blog, then you already know we are more vulnerable to Covid-19 and why.

“Are there special precautions that someone with kidney disease should take?

Older adults and people with kidney disease or other severe chronic medical conditions seem to be at higher risk for more serious COVID-19 illness. If you are at higher risk of getting very sick from COVID-19, you should:

• Stock up on supplies
• Take everyday precautions to keep space between yourself and others
• When you go out in public, keep away from others who are sick, limit close contact
• Wash your hands often
• Avoid crowds as much as possible
• During an outbreak in your area, stay home as much as possible.

Please remember that if you are on dialysis, you should not miss your treatments. Contact your clinic if you feel sick or have any questions or concerns.

If you have a kidney transplant, it is important to remember to keep taking your anti-rejection medicines, maintain good hygiene and follow the recommendations from your healthcare team. Contact your healthcare team with any questions or concerns….

Should CKD patients wear masks in public?

It is best to stay home, unless you need to attend a dialysis treatment. If you must go out in public, ask your healthcare provider if it is necessary as a CKD patient to wear a face mask since each individual case is different.

The Centers for Disease Control and Prevention (CDC) recommends face masks for those who are infected with COVID-19, have symptoms of COVID-19, or taking care of someone with COVID-19.

The CDC also recommends wearing cloth face coverings to slow the spread of COVID-19 in areas where community-based transmission is significant. These homemade cloth face coverings are not masks and do not replace the President’s Coronavirus Guidelines. (Gail here: As you can see, Trump doesn’t have much more to offer than what we already know. To be fair, this site hasn’t been updated since March 16^th, over a month ago. Wait a minute! Why isn’t this site updated daily?)

Tips for using a mask include a snug but comfortable fit covering the bridge of the nose and the entire mouth. Also, be sure to be laundered [sic] the cloth mask after use each outdoor use, ideally without damage to the shape or structure of the mask. … The CDC also recommends coffee filters as an alternative. Use of any mask is in addition to practicing social distancing or at least 6 feet from others to limit coronavirus spread. All patients at high risk, such as immunosuppressed transplant recipients or people receiving dialysis should follow the directions of their clinicians regarding the type of face covering that should be used outside of a clinic setting.

When in public it is important to practice social distancing by staying 6 feet away from other people and to also avoid touching your face. Wash your hands immediately after you have been in public.”

This is still paltry information at best. Emedicine at https://www.emedicinehealth.com/script/main/art.asp?articlekey=228849 gives us just a bit more insight about patients on dialysis according to the CDC:

“The CDC (Centers for Disease Control and Prevention) guidance recommends that for medically stable patients facilities give the option of waiting in a personal vehicle or outside the facility and to be contacted by mobile phone when they are ready to be seen.

• Dialysis facilities should have space allocated to allow patients who are ill to sit separately from other patients by at least 6 feet.
• Patients experiencing respiratory symptoms should promptly be taken to appropriate treatment areas to reduce time in waiting areas.
• For those with symptoms, ideally, dialysis treatment should be provided in a separate room from other patients, with the door closed.
• If a separate room is not available, the masked patient should be treated at a corner or end-of-row station not near the main traffic flow. A separation of at least 6 feet should be maintained between masked, symptomatic patients and other patients during treatment.
• Use of hepatitis B isolation rooms should only be considered for patients with respiratory symptoms if the patient has hepatitis B or if no patients treated at the facility have hepatitis B.

Healthcare personnel caring for patients with undiagnosed respiratory infections should further observe standard contact and droplet precautions with eye protection unless a suspected diagnosis such as tuberculosis requires airborne precautions, according to the guidance.

Precautions should include using gloves, facemasks, eye protection, and isolation gowns.”

And transplantees? I am so frustrated by the lack of more concrete information that might be more helpful than that given to non-kidney patients. UNOS (United Network for Organ Sharing) at https://optn.transplant.hrsa.gov/governance/policy-notices/ offers the following information:

“COVID-19 Policy Actions Implemented

The table below contains information for actions taken to address OPTN operational issues in the COVID-19 crisis.

Policy	Summary	Documents & supporting resources	Effective date
Policy 1.4.F: Updates to Candidate Data during 2020 COVID-19 Emergency	This emergency policy will allow transplant programs to refresh candidate clinical data with data obtained through previous testing in order to maintain current waitlist priority. This policy prevents candidates who cannot undergo routine testing due to the COVID-19 crisis from being adversely affected on the waitlist.	OPTN Policy Notice	March 17, 2020
Policy 3.7.D: Applications for Modifications of Kidney Waiting Time during 2020 COVID-19 Emergency	This emergency policy allows transplant programs to submit a waiting time modification application to retroactively initiate waiting time for affected candidates. This policy prevents potential non-dialysis candidates who meet creatinine clearance or glomerular filtration rate (GFR) criteria from being disadvantaged because they cannot obtain other testing required.	OPTN Policy Notice	April 3, 2020
Policy 18.1: Data Submission Requirements Policy 18.2: Timely Collection of Data Policy 18.5.A: Reporting Requirements after Living Kidney Donation Policy 18.5.B: Reporting Requirements after Living Liver Donation	This emergency policy change relaxes requirements for follow-up form submission. The intent of the policy is to prevent unnecessary exposure risk to transplant recipients and living donors, and also to alleviate data burden for centers in the midst of COVID-19 crisis.

 

Longer blog or not today – and it is much longer – I wish you all would adhere to these conditions. Are they restricting? Possibly. Are they uncomfortable? Could be. Are they lifesaving? It seems they are. Be safe.

Until next week,

Keep living your life!

Saving Lives

Last week, I promised to write about COVID-19 and Chronic Kidney Disease for today’s blog. This topic has touched me personally since one of my daughters was sent to the hospital when it was suspected she’d contacted the virus. Without the COVID-19 test, we still don’t know if she has the virus. We do know she still has the cough. Luckily, an x-ray proved her lungs were clear, so she was sent home with a Z-pack and orders to take Tylenol. No, she doesn’t have CKD, but her treatment at the hospital left me with a lot of questions for those of us who do.

Once again, I’m rushing headlong into the topic. Let’s slow down and start at the beginning. Why is it called COVID-19 anyway? According to the Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/coronavirus/2019-ncov/faq.html,

“On February 11, 2020 the World Health Organization announced an official name for the disease that is causing the 2019 novel coronavirus outbreak, first identified in Wuhan China. The new name of this disease is coronavirus disease 2019, abbreviated as COVID-19. In COVID-19, ‘CO’ stands for ‘corona,’ ‘VI’ for ‘virus,’ and ‘D’ for disease. Formerly, this disease was referred to as ‘2019 novel coronavirus’ or ‘2019-nCoV.’”

There are many types of human coronaviruses including some that commonly cause mild upper-respiratory tract illnesses. COVID-19 is a new disease, caused be [sic] a novel (or new) coronavirus that has not previously been seen in humans. The name of this disease was selected following the World Health Organization (WHO) best practice for naming of new human infectious diseases.”

I don’t know about you, but I want to know about corona viruses. How did they get that name? So I went to Dictionary.com at https://www.dictionary.com/browse/coronavirus where I hoped to find that information. This is what was there.

“any of various RNA-containing spherical viruses of the family Coronaviridae, including several that cause acute respiratory illnesses.”

To be honest, all I understood was that it “causes acute respiratory illnesses.” Like my daughter’s coughing. But why would she be given a Z-pack for that? Healthcare-Online at www.healthcare-online.org/What-Is-A-Z-Pack.html confirmed my belief that antibiotics are for bacterial infections, not viral ones. Curiouser and curiouser.

Drugs.com at https://www.drugs.com/medical-answers/antibiotics-kill-coronavirus-3534867/ had the answer.

“The World Health Organization (WHO) is very clear that antibiotics do not work against viruses, only bacteria, and yet health care providers are using antibiotics in some patients with COVID-19. This is because:

• Patients with viral pneumonia can develop a secondary bacterial infection that may need to be treated with an antibiotic, although, this complication is reported to be uncommon early on in the course of COVID-19 pneumonia.
• Also known as Azithromycin, a Z-pack is a medication used for treating serious and severe infections caused by bacteria. It contains macrolide antibiotic, which helps in stopping all forms of growth caused bantibiotic, although, this complication is reported to be uncommon early on in the course of COVID-19 pneumonia.If treatment is required for a secondary bacterial infection then a range of antibiotics can be used such as penicillins (ampicillin plus sulbactam [Unasyn], piperacillin plus tazobactam [Zosyn]), macrolides (azithromycin), cephalosporins (ceftriaxone [Rocephin]), aminoglycosides (tobramycin) and glycopeptides (vancomycin [Vancocin HCL]) for example. Often a combination of two different antibiotics is used.
• Azithromycin is also thought to have antiviral and anti-inflammatory activity and may work synergistically with other antiviral treatments. In in vitro laboratory studies azithromycin has demonstrated antiviral activity against Zika virus and against rhinoviruses, which cause the common cold.”

Time to deal with CKD when you have COVID-19. I wanted to understand how CKD could make you more vulnerable to this disease. I turned to Prevention at https://www.prevention.com/health/a31245792/coronavirus-high-risk-groups/ for more information.

“People with underlying health conditions are at a higher-than-normal risk of developing severe forms of COVID-19…. When your body is already dealing with a separate health condition, it has less energy to put toward fighting an acute infection…. The CDC says these conditions include:

• Blood disorders, such as sickle cell disease or taking blood thinners
• Chronic kidney disease, as defined by your doctor
• Chronic liver disease, as defined by your doctor
• Compromised immune system, including undergoing cancer treatment such as chemotherapy or radiation, having received an organ or bone marrow transplant, or taking     high doses of corticosteroids or other immunosuppressant medications, and HIV or AIDS
• Current or recent pregnancy in the last two weeks
• Endocrine disorders, such as diabetes
• Metabolic disorders
• Heart disease
• Lung disease, including asthma
• Neurological and neurologic and neurodevelopment conditions”

This is definitely not a case of misery loves company. Not only do I have CKD, but I am undergoing chemotherapy. Oh, and I have diabetes. To all others in the high risk group, I’m so sorry we all belong to this particular community right now.

Hmmm, do we need to do something more than everyone else needs to do to avoid COVID-19? After spending more time than usual surfing the web, I admit I was surprised that there were no extra precautions other than those for everyone else. What are those you ask? Back to the CDC for their infograph at https://www.cdc.gov/coronavirus/2019-ncov/downloads/COVID19-What-You-Can-Do-High-Risk.pdf which makes it easy for us to understand. It also defines who is higher risk. Unfortunately, it could not be reproduced, so you’ll have to go to the website directly.

I always seem to feel better when I understand what might be a threat to me or anyone in one of my communities. The purpose of today’s blog was to help you understand so that you may also feel better. Make no mistake: This is serious. I only go out to Chemotherapy every other week. Even young, not high risk people from my dancing community are being safe. They are not going out either (unless they are essential workers). Do yourself a favor and save your life by staying in.

Until next week,

Keep living your life!

Lovely, Lovely Medicinal Food

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

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

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

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

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

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

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

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

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

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

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

Kidney Disease Facts

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

 

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

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

Until next week,

Keep living your life!