It’s Seasonal

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

A few reminders first. According to Medical News Today: 

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

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

I started seeing her for osteoarthritis decades ago. 

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

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

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

Photo by Ketut Subiyanto on Pexels.com

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

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

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

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

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

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

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

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

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

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

Other risk factors include: 

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

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

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

Until next week, 

Keep living your life! 

aHus is …

When I first stumbled upon this word, I thought it might have something to do with marriage since the initial syllable of husband is hus. According to Vocabulary.com, 

“The word husband comes from the Old Norse hūsbōndi, where hūs meant house and bōndi meant dweller.” 

But then, I looked up aHus. Was I ever wrong in assuming this had to do with a house. I turned to my trusted favorites to see what I could find out about this word I hadn’t heard before, starting with the American Kidney Fund: 

“aHUS (atypical hemolytic uremic syndrome) is a very rare disease that causes tiny blood clots to form in the small blood vessels of your body. These blood clots can block blood flow to important organs, such as your kidneys. This can damage your kidneys and lead to kidney failure.” 

I’m pretty sure we all know what atypical and syndrome mean. Just in case you forgot, uremic means of or about the urine. And hemolytic? That means blood (hemo) and lysis (rupturing). Or in this case, “rupturing of the red blood cells and the release of their contents into the surrounding fluid.” Thanks for helping us out here, Wikipedia. While this was the most reader friendly definition I could find, keep in mind that anyone can edit a Wikipedia entry. 

So, we’re back in the realm of rare diseases. I’d like to know what causes this particular rare disease. Since it is a rare disease, I went to GARD’s website for information about how one gets this disease. By the way, GARD is the new website for Genetic and Rare Diseases and is part of National Center for Advancing Translational Sciences. That’s part of the U.S. Department of Health and Human Services’ National Institutes of Health. 

“It can occur at any age and is often caused by a combination of environmental and genetic factors. Genetic factors involve genes that code for proteins that help control the complement system (part of your body’s immune system). Environmental factors include certain medications (such as anticancer drugs), chronic diseases (e.g., systemic sclerosis and malignant hypertension), viral or bacterial infections, cancers, organ transplantation, and pregnancy. In about 60% of aHUS, a genetic change may be identified. The genes associated with genetic aHUS include C3, CD46 (MCP), CFB, CFH, CFHR1, CFHR3, CFHR4, CFI, DGKE, and THBD. Genetic changes in these genes increase the likelihood (predisposition) to developing aHUS, rather than directly causing the disease. In most cases, there is no family history of the disease. In cases that do run in families, predisposition to aHUS is inherited in an autosomal dominant or an autosomal recessive pattern of inheritance.” 

Uh-oh, did you notice ‘organ transplantation’ as one of the environmental factors which may cause this disease? And ‘chronic disease’? That makes it even more important for us to know how to recognize if we have this disease. Well, how do we do that? 

I went to the site called aHusNews to see if they could pinpoint the symptoms. Sure enough, they could. 

“Often, people with aHUS will report a vague feeling of illness, with non-specific symptoms that may include paleness, nausea, vomiting, fatigue, drowsiness, high blood pressure, and swelling. 

There are three hallmark symptoms that define aHUS: hemolytic anemia, thrombocytopenia, and kidney failure. 

Symptoms can appear at any age, though it is slightly more common for them to first appear in childhood rather than later on in life. Adult-onset aHUS is more frequent in biological females than males, whereas childhood-onset disease affects both sexes equally.” 

Is that how it’s diagnosed, I wondered. A different site, called Ahus.org was helpful here.  

“…. After initial blood tests, the hospital may conduct Creatinine and BUN tests and may (or may not) reach an initial Diagnosis of atypical HUS. The flu like symptoms … will continue to worsen when episodes are active. At this point, kidney function may begin to fall, often quite dramatically. Other organs sometime experience problems in some cases. Quite often, seizures have been reported, along with other neurological issues. Sometimes gastronomical problems occur as well. 

During an extended atypical attack or episode, the tell-tale signs of aHUS are very obvious. Hemoglobin levels may fall to 6-7, when normal levels should be 11-13: Hematocrit levels may fall in the low 20s, when normal levels should be in the mid 30s. Creatinine and BUN levels start to rise, characteristics of failing kidney function. Blood Pressure will become a nagging, recurring problem. Diarrhea and vomiting may also be present (sometimes that occurs with the initial onset, at other times it occurs later) …. 

TRIGGERS VS. THE CAUSE 

It is important not to confuse ‘triggers’ of atypical HUS with the root cause. In normal life, many of us get colds, the flu, infections, and the body’s immune system deal with those properly. In aHUS, a person may get a cold, and it triggers a full blown aHUS episode. This occurs simply because the body’s immune system is not reacting properly to the event.” 

Photo by Andrea Piacquadio on Pexels.com

The site mentions other specific tests that may be done to diagnose aHus. 

All this is worrisome. Is there, perhaps, a cure? No, there isn’t. This is a lifelong disease, but there are treatments available. Our old friend WebMD explains: 

” The FDA has approved two drugs to treat aHUS: 

Eculizumab (Soliris) 

Ravulizumab (Ultomirus) 

Both drugs are monoclonal antibodies. These are human-made proteins that act like natural antibody proteins in your body. They attach to other proteins called antigens. Once they attach, they tell your immune system to destroy cells with that antigen. 

Eculizumab can increase your blood platelet and red blood cell counts. If you take it early enough, it can also reverse any kidney damage you have. 

Your doctor will give you eculizumab by injection in their office. You may have side effects from the drug…. You can also get ravulizumab as an injection. Common side effects include high blood pressure, headache, and cold symptoms. You could also have digestive system problems such as diarrhea, nausea, and vomiting. 

Eculizumab and ravulizumab are a type of drug called complement inhibitors. These kinds of drugs may carry a risk of getting meningococcal disease. The CDC suggests people taking them get a meningococcal vaccine. Your doctor may also suggest you take antibiotics to help prevent meningococcal disease. 

Besides eculizumab and ravulizumab, you can also treat the symptoms of aHUS with plasma therapy. Plasma is a liquid portion of your blood that takes important nutrients, hormones, and proteins throughout your body. 

When you get plasma therapy, you may either have a plasma infusion or plasma exchange. 

In a plasma infusion, a doctor puts plasma from a donor into your body. In a plasma exchange, a doctor filters plasma parts out of your blood and replaces them with donor plasma. 

If your kidneys don’t respond to treatment, you may need kidney dialysis or a kidney transplant.” 

Now you know, whether you wanted to or not. I’m sorry. 

Until next week, 

Keep living your life! 

Meet Me at the Meeting

This past week I registered for my second Association of American Kidney Patients Annual National Patient Meeting. This is their 47^th. My first was several years ago in Tampa, Florida. I was thrilled to see other chronic kidney disease awareness advocates I’d been working with and meet new ones. Due to Covid, I don’t attend live meetings anymore. This year’s AAKP meeting is virtual… just my style these days.   

It occurred to me that I hadn’t blogged about AAKP in a while. It’s time, isn’t it? I’ve long been fascinated by how this organization started as grass roots operation. This is from AAKP’s About Us page: 

“The American Association of Kidney Patients (AAKP) is the oldest and largest fully independent kidney patient organization in the U.S. Founded in 1969 by six dialysis patients, with doctor encouragement, our Founders helped create the End Stage Renal Disease (ESRD) Program, saving more than one million lives since 1973. 

Founded by Patients for Patients 

Our Founders wanted to form an organization that would elevate the kidney patient voice in the national healthcare arena, provide patients with educational resources to improve their lives, and give kidney patients and their family members a sense of community. These patients met twice a week in the King’s County hospital ward (NY) and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP. 

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP) ….” 

Fascinating, isn’t it? Before we go any further, I want to make certain you understand that this is not an advertisement, nor am I selling you anything. Membership and the meeting are both free. 

What goes on at these meetings, you might be wondering. This year, the meeting is from September 21-23 and offers so many different educational opportunities. We know I’m not on dialysis and am stage 3B. There are plenty of outbreak sessions I’m interested in. Some of these are: 

“Disease Management: Lab Values Explained! The Importance of Knowing Your Numbers & What Those Numbers May Mean for Your Health This session is proudly sponsored by CareDx, Inc. Lana Schmidt, AAKP National Board of Director, Ambassador, former dialysis patient, current transplant recipient Prabir Roy-Chaudhury, MD, PhD, FRCP (Edin); Professor of Medicine and Co-Director of the University of North Carolina (UNC) Kidney Center 

Disease Management: Be Prepared: What Kidney Patients Should Know Before Going into the Hospital This session is proudly sponsored by AstraZeneca. Leigh-Ann Williams, AAKP Ambassador, home hemodialysis patient Rohan S. Paul, MBBS, transplant nephrologist with Washington University in St. Louis, and the George Washington Transplant Institute; Member, Public Policy Committee, American Society of Transplantation (AST)  

Disease Management: Staying Healthy with Kidney Disease This session is proudly sponsored by Otsuka Pharmaceuticals. Jim Myers, AAKP National Board of Director, Ambassador, former dialysis patient, current transplant recipient Stephen Fadem, MD, FACP, FASN; Chair, AAKP Medical Advisory Board; Clinical Professor of Medicine, Baylor College of Medicine, Section of Nephrology”  

Should you be preparing for a transplant, transplanted already, or on dialysis, there are plenty of outbreak sessions for you, too. Everyone is covered in this meeting. Then there are the outbreak sessions about spreading awareness, research and innovation. You name it, there’s probably an outbreak session for it. 

Of course, there are also approximately hour-long general sessions on such topics as diversity, xenotransplantation, books as awareness [shoutout to Suzanne Ruff and Risa Simon], and even the need for a kidney emoji – no kidding. 

Lest you think this is all too intense [well, except for the emoji general session – although that’s a more serious topic than you suspect.] there are sponsor halls to view and networking conversations to join. There’s even a five minute “wellness” break during the day. I wonder if that means bathroom or water break. 

I don’t think I’ve mentioned the breakout sessions for vets or on the kidney diet yet. These can be very helpful for those who were unaware of these. I’m saying this because I just got an email from a vet whose doctor told him to just watch his sodium intake. The vet is at stage 3A and felt he could be doing more to prevent his CKD from progressing quickly. He was right.  

By the way, this year’s meeting theme is “Patient Consumers: Leaders for Kidney Research and Innovation.” We are the patient consumers – you and me. It follows that we are then the leaders in research and innovation. In order to fulfill that role, we need to educate ourselves about our kidneys, our conditions [stage, dialysis, transplant], how we can better our conditions, and how to get the word out for kidney disease awareness. We also need to know what innovations are on the horizon and how we can help our government help us. It sounds like a tall order, but the meeting will help you learn whatever you choose to. 

So, how do you get to go to this marvelous meeting [Oh goody, alliteration]? You can register at bit.ly/AAKPNPM or go directly to AAKP’s website. Those of you reading the blog on your computers can click through. On their website, you can also view the annual patient meetings of the last three years via YouTube to get an idea of what it’s like. You should also know that the meeting is interactive. Should you decide to register, you do need a computer and either Chrome or Foxfire. 

You know, the meeting is in just two days. Maybe you ought to go register now. See you there. 

Until next week, 

Keep living your life! 

There is a Difference, You Know

I usually write the blog on Friday since that’s the quietest day of the week in my house. Not this week, though. Bear had doctors’ appointments in two different offices. That sort of blew the day for us since we had lunch in-between and I’m just no good after 3:30. My brain and my body seem to shut down then. 

Photo by Andrea Piacquadio on Pexels.com

More often than not, I don’t know what I’m going to write about until I wake up that morning. I have not only the topic in my mind then, but also the opening paragraphs. I hadn’t realized how lucky I am to have this sort of, well, magic until I started talking with other writers about it. 

Today is all about diabetes. Here’s why: Last May, I wrote about CGM or Continuous Glucose Monitor. This sentence is from that blog: 

“The fluid mentioned in discussing the CGM is not your hemoglobin, but your blood serum.”  

I remember being surprised and wondering what the difference was. Today, we find out. How about a few definitions first? 

Blood serum – “the clear yellowish fluid that remains from blood plasma after clotting factors (such as fibrinogen and prothrombin) have been removed by clot formation” [Merriam-Webster Dictionary] 

Continuous Glucose Monitor – “Continuous glucose monitoring (CGM) devices help you manage Type 1 or Type 2 diabetes with fewer fingerstick tests. A sensor just under your skin measures your glucose levels 24 hours a day. A transmitter sends results to a wearable device or cell phone. It takes time to learn how to use CGM, but it can help you more easily manage your health.” [Cleveland Clinic] 

Hemoglobin – “Hemoglobin is an iron-rich protein in red blood cells. Oxygen entering the lungs attaches to hemoglobin in the blood, which carries it to tissues in the body.” [MedicalNewsToday] 

I like how I got to use my favorite dictionary of all time just now. Back to CGMs. I stumbled across a manufacturer’s site that explained quite a bit about CGMs. I am not endorsing the product, but am thankful for Medtronic’s explanation: 

“Your sensor glucose (SG) readings are taken from your interstitial fluid, and not from your blood, like fingersticks. Interstitial fluid is the fluid that surrounds the cells of your tissue below your skin, and usually glucose moves from your blood vessels and capillaries first and then into your interstitial fluid. It’s helpful to think about it like a rollercoaster where the front car is the blood glucose (BG) and the car in the back is the sensor glucose (SG): 

When on the rise, the BG value is greater than the SG that follows behind it. But when moving down the tracks, the BG in front is now less than the SG value. 

A few points to remember when using CGM with your MiniMed® 530G with Enlite® [Gail here – I’m guessing this holds true for other CMGs, too, since it makes sense. Also, the picture is of my Libre Freestyle 2, not a MedTronic product.]: 

SG and BG readings will rarely match and are expected to be different 

A greater difference between SG and BG will be seen when your glucose is changing quickly, such as after eating or after taking a bolus of insulin 

And most importantly, always confirm with your BG value before deciding to correct a high or treat a low glucose 

Here’s A Tip: Knowing the direction and speed of your glucose changes will be more useful than focusing on individual BG or sensor readings. When using continuous glucose monitoring (CGM) trends are the key. In fact, seeing trends and patters in your glucose is likely one of the primary reasons you started using CGM therapy. Trends highlight the direction that your sensor glucose readings are moving and the speed at which they are changing. Fingerstick blood glucose readings and sensor glucose readings are only snapshots of your glucose at that very moment. Trends can tell you if your glucose has been rising, falling, or appears to have been stable over several minutes, hours, and even the day. 

So it’s important not to focus too much on the individual sensor glucose numbers (as it is likely to be different from your BG meter reading) and more on trends and patterns in your glucose levels.” 

NewsMedicalLifeSciences has an interesting bit of information for us: 

“Whole blood and serum blood glucose is often different. Red blood cells have higher concentration of protein than serum and serum has higher water content and more dissolved glucose than whole blood. To obtain blood glucose in serum from figures in whole blood, it is multiplied by 1.15.” 

Between pre-diabetes and diabetes type 2, I’ve been in the diabetes world for years. Yet, no one – nephrologist, PCP, nor endocrinologist – has ever mentioned this to me. You’d think at least the endocrinologist would. 

I also find it interesting that I’d never been told about the 5-10 minute delay in accurately reporting serum blood glucose. What 5-10 minute delay, you ask. Whoops, I neglected to explain it, didn’t I? No problem. ResearchGate can do that for us: 

“This delay is the consequence of the process of glucose diffusion across the walls of capillary vessels and through the interstitial space to the sensor. This process requires some time, and the delay can be observed during both rising and decreasing BG values, probably with varying impact.” 

The National Institutes of Health offer a succinct summary of the advantages and disadvantages of serum blood glucose testing: 

“Advantages: In patients requiring insulin therapy (both type 1 diabetes and in patients with type 2 diabetes requiring intensive insulin therapy and or sulfonylureas, flash monitoring has been demonstrated to be cost-effective when compared to CBG self-monitoring of blood glucose (SMBG). Interstitial glucose measurements are recorded as frequently as every 5 minutes every hour, which has the benefit of monitoring for hypoglycemia during sleep at night. 

Disadvantages: Glucose is first seen in blood before it is seen in the interstitial fluid, which the CGM measures hence may not always be a reliable indicator in rapidly changing blood glucose levels. The high cost of sensors and machines (approximately $5000 per annum) may not make this a viable option in economically less advantaged clients and communities where health care is not subsidized by insurance or the government.” 

As for me, I’m glad not to have those finger pricks anymore. I’m only human, after all. 

Until next week, 

Keep living your life! 

Another New Concept

Let’s see how many of you know this new concept. Well, it’s new to me anyway: DUTCH.  I’ll bet it doesn’t ring any bells for you either. I’ll give you a hint. It’s an acronym, not an adjective. Ugh! I keep forgetting not everyone was an English teacher. An acronym is when you use just the first letters of a phrase rather than spelling each word out. An adjective describes a noun [person, place, thing, or idea].  

I gave in and started researching it. Dr. Lisa Watson, a naturopathic doctor from Canada, explains: 

“DUTCH is an acronym that stands for Dried Urine Test for Comprehensive Hormones. It is a simple, but sophisticated test that looks not just at your hormones, but how your body processes and metabolizes them. 

The DUTCH test looks not just at your reproductive hormones (although it does look at those quite thoroughly), but it also looks at your stress hormones, your androgens (male pattern hormones), your melatonin and the new DUTCH test also looks at organic acids – markers for mood and nutritional balance in the body.” 

Of course, then I wanted to know what dried urine had to do with it. I found the answer at DUTCH test complete collection instructions: 

“Complete all information on each collection device. 

 Saturate the filter paper by urinating directly on it OR use a clean cup and dip the filter paper. Leave the collection device open to dry for at least 24 hours.  

Once dry, close each collection device. Place all devices in the resealable plastic bag and return in the provided envelope….”  

So now we know what it is and how to do it, but what does it have to do with us? The answer may be in what it is that the D.U.T.C.H. looks at. The Holland Clinic [fortunate name for this test information, isn’t it?] lists the following hormones: 

• “Cortisol 
• Cortisone 
• Estradiol 
• Estrone 
• Estriol 

• Progesterone 
• Testosterone 
• DHEA 
• Melatonin 

This test also measures cortisol and cortisone rhythms and levels, and estrogen metabolism pathways.” 

Before we get to how any of these affect the kidneys or diabetes, here’s a reminder of what hormones are from The Cleveland Clinic: 

“Hormones are chemicals that coordinate different functions in your body by carrying messages through your blood to your organs, skin, muscles and other tissues. These signals tell your body what to do and when to do it. Hormones are essential for life and your health.” 

Cortisone is synthetic cortisol, so let’s deal with cortisol. 

Does cortisol look familiar? No? Maybe The Mayo Clinic can be helpful here: 

“Cortisol, the primary stress hormone, increases sugars (glucose) in the bloodstream, enhances your brain’s use of glucose and increases the availability of substances that repair tissues.” 

Blood sugar or glucose has to do with diabetes. For example, when my NY daughter had a problem and I couldn’t go there to help her with it, I had high blood sugar until it was resolved. And what does high blood sugar do to you? I turned to Healthline to see if I could find an answer… and I did: 

“If high blood sugar levels go untreated for too long, glucose will build up in your bloodstream and your cells will be starved for fuel. Your cells will use fat for fuel instead. 

When your cells use fat instead of glucose, the process produces a byproduct called ketones: 

People with diabetes can develop diabetic ketoacidosis (DKA), a potentially deadly condition that causes the blood to become too acidic. Because of poorly functioning insulin in people with diabetes, ketone levels aren’t kept in check and can rise to dangerous levels very quickly. DKA can result in diabetic coma or death.” 

Whoa, baby! How do we recognize this dangerous state before it puts us in a coma or kills us? 

“Early symptoms include the following: 

Thirst or a very dry mouth 

Frequent urination 

High blood glucose (blood sugar) levels 

High levels of ketones in the urine 

Then, other symptoms appear: 

Constantly feeling tired 

Dry or flushed skin 

Nausea, vomiting, or abdominal pain. Vomiting can be caused by many illnesses, not just ketoacidosis. If vomiting continues for more than two hours, contact your health care provider. 

Difficulty breathing 

Fruity odor on breath 

A hard time paying attention, or confusion” 

Thank you to Diabetes.org for the above information. 

So, is D.U.T.C.H. worth your time, effort, and money? That’s between you and your doctor. I do need to let you know I found both nutritionists and endocrinologists online who felt the test was not worth the $119-$600 it costs. It is not covered by insurance. I’ve also read that they feel this test is useless since other tests can offer the same information in their results. So many pros and cons! 

Time to switch topics for a little bit. The AAKP [American Association of Kidney Patients] National Patient Meeting 2022 is coming up on September 21-23. You may register on their website at https://aakp.org/programs-and-events/national-patient-meeting/ 

In their own words: 

“Each year, AAKP hosts a timely and interactive virtual meeting featuring a diverse line-up of speakers crossing all sectors of the kidney community including the top influencers in kidney care from Federal government, medical professionals, academia, private industry and non-profit professional organizations in the kidney community; along with a virtual exhibit hall which will allow participates to engage with various kidney-related companies/organizations. 

All 2022 AAKP events will be held virtually to ensure the safety of all participants.” 

Unsure what this is all about? You can also view YouTubes of the last two National Patient Meetings through their website. Still have questions? Call AAKP at (800) 749-2257 or (813) 636-8100. 

Well, it’s time for this internationally famous blogger and author [as one interviewer called me] to go finish the laundry. 

Until next week, 

Keep living your life!  

Move It (Please)

Lately, everywhere I look I see some information about exercise. That’s probably because I’ve had enough of hiding from it. I didn’t feel like I had much control over my pancreatic cancer, but I did have control over whether I exercised or not. So, I didn’t. Bad move on my part. It’s taken me almost three years to understand that I wasn’t doing myself any favors by avoiding exercise. 

So first, I tried tap dancing. I’d always wanted to learn how to do that. Gregory Hines was my hero at one time just because he was such a marvelous tap dancer. That didn’t work out too well. I have osteoarthritis in my feet, knees, and hips. My rheumatologist strongly suggested I NOT tap dance. Oh, well. 

Then I thought I’d go back to walking. I used to love to take my dog on long, wandering walks. Unfortunately, Sweet Ms. Bella succumbed to her own cancer. A few years later, my big, fluffy, white dog, Shiloh, came to live with us. One thing this 70 lb. dog does not do is walk on a leash. That didn’t really matter as much as I’d thought it did because I got older and simply could no longer deal with the Arizona heat. I wonder if the chemotherapy had anything to do with that. 

My third attempt at exercise was with an online app. This one was sort of a chair yoga. I hadn’t remembered about the bone on bone in my neck or the neuropathy in my hands and feet. Ouch! Not to worry, I’ll find something; it’s just a matter of trying.  

Meanwhile, let’s take a look at why it’s so important for us to exercise. It’s important for everyone, but I mean chronic kidney disease patients and diabetes specifically.  

“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 triglycerides. 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 revisited the topic of exercise towards the end of last year and found new information, which makes sense since more than 10 years has passed since the publication of my first CKD book: 

“As for lowering both parts of your blood pressure, that’s good news too since high blood pressure is the second most common cause of CKD …. By the way, systolic is the top number which measures your heart rate when blood is being pumped to all parts of your body. Diastolic is the bottom number which measure your heart rate when your heart is at rest.  

Lowering your BMI is also a boon. Excess weight may lead to diabetes which, in turn, could lead to CKD. According to the National Center Biotechnology Information [NCBI],  

‘A high body mass index is one of the strongest risk factors for new-onset CKD. In individuals affected by obesity, a compensatory hyperfiltration occurs to meet the heightened metabolic demands of the increased body weight. The increase in intraglomerular pressure can damage the kidneys and raise the risk of developing CKD in the long term.’”    

And then, there’s the latest information about exercise from the National Kidney Foundation:  

“How does exercise benefit me? 

With exercise, it becomes easier to get around, do your necessary tasks and still have some energy left over for other activities you enjoy. 

In addition to increased energy, other benefits from exercise may include: 

Improved muscle physical functioning 

Better blood pressure control 

Improved muscle strength 

Lowered level of blood fats (cholesterol and triglycerides) 

Better sleep 

Better control of body weight …. 

Type of Exercise 

Choose continuous activity such as walking, swimming, bicycling (indoors or out), skiing, aerobic dancing or any other activities in which you need to move large muscle groups continuously. 

Low-level strengthening exercises may also be beneficial as part of your program. Design your program to use low weights and high repetitions, and avoid heavy lifting. 

How Long to Exercise 

Photo by Andrea Piacquadio on Pexels.com

Work toward 30 minutes a session. You should build up gradually to this level. 

There is nothing magical about 30 minutes. If you feel like walking 45 to 60 minutes, go ahead. Just be sure to follow the advice listed under “When should I stop exercising?” in this brochure. 

How Often to Exercise 

Exercise at least three days a week. These should be non-consecutive days, for example, Monday, Wednesday and Friday. Three days a week is the minimum requirement to achieve the benefits of your exercise. 

How Hard to Work While Exercising  

This is the most difficult to talk about without knowing your own exercise capacity. Usually, the following ideas are helpful:  

Your breathing should not be so hard that you cannot talk with someone exercising with you. (Try to get an exercise partner such as a family member or a friend.) You should feel completely normal within one hour after exercising. (If not, slow down next time.)  

You should not feel so much muscle soreness that it keeps you from exercising the next session.  

The intensity should be a “comfortable push” level.  

Start out slowly each session to warm up, then pick up your pace, then slow down again when you are about to finish.  

The most important thing is to start slowly and progress gradually, allowing your body to adapt to the increased levels of activity.” 

There’s more on their website.  

No excuses now. Let’s go exercise. 

Until next week, 

Keep living your life! 

What’s Your Superpower?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Pros of being a supertaster: 

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

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

Cons of being a supertaster 

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

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

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

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

Here are some reminders to help you see the connections.  

Pros: 

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

Cons: 

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

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

Until next week, 

Keep living your life! 

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! 

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! 

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!

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!  

What’s the Supply Chain Got to Do with Us?

That’s a good question. As a chronic kidney patient stage 3b, it hasn’t got too much to do with me except for which foods are available. As a diabetic, I may have trouble getting insulin down the line… and I don’t mean due to the price. But some of my readers on dialysis are having problems right now due to the supply chain. 

When I first heard the term ‘supply chain,’ I took guesses as to what it might mean. Let me spare you from that. The phrase wasn’t included in my favorite dictionary, the Merriam-Webster, so I turned to Dictionary.com: 

“marketing a channel of distribution beginning with the supplier of materials or components, extending through a manufacturing process to the distributor and retailer, and ultimately to the consumer” 

In this case, the consumer is the dialysis patient with the retailer being the dialysis clinic. The distributor is probably the representative of the manufacturing company. The shortage I’ve been reading about is that of dialysate. But what is that? 

This time my favorite dictionary came through: 

“the material that passes through the membrane in dialysis” 

As a non-dialysis CKD patient, my first question was “What membrane?” Luckily, the National Center for Biotechnology Institute [NCBI] explained simply: 

“The blood and dialysis fluid are separated only by a thin wall, called a semipermeable membrane. This membrane allows particles that the body needs to get rid of to pass through it, but doesn’t let important parts of the blood (e.g. blood cells) pass through.” 

Okay now, back to our original quest to figure out how the supply chain is affecting dialysis patients. 

 Take a look at these quotes on KHOU [Houston, Texas] in late January of this year: 

“Statement of Brad Puffer, spokesperson for Fresenius Medical Care North America: 

‘We recognize the critical need for these supplies for patients requiring dialysis treatment. Our delivery drivers and manufacturing employees have been impacted by the latest wave of COVID-19 which has resulted in regional delivery and supply challenges. This has occurred despite a high vaccination rate among our employees and strict safety procedures in place. 

‘We are committed to resolving this unprecedented situation and have gone to great lengths to deliver dialysis supplies, including bringing in volunteer employees from other parts of the company and National Guard members to supplement our workforce. Our company will continue to work tirelessly to resolve these issues in order to maintain high-quality patient care.’ 

Statement of Dr. Jeffrey Hymes, Chief Medical Officer for Fresenius Kidney Care: 

‘In emergency situations, it is sometimes necessary to temporarily adjust the dialysis prescription to optimally utilize available resources. These decisions are made at the direction of our patients’ treating physicians with attention to the needs of each individual. We know from our previous experience in natural disasters that these changes can be made while still meeting the standards for adequate dialysis. Our patients’ health and safety remain our top priority.’” 

So, it’s not that there’s a dearth of dialysate, but that Covid has caused a need for more and also knocked out many of the necessary workers. Covid is a pandemic [worldwide illness], which may become endemic [common illness]. If dialysis patients’ time on the machine that saves their lives is shortened, how safe will they be? 

MyHealth.Alberta.ca answers that question: 

“If you don’t get enough dialysis treatment, you may have extra fluid that stays in your body and causes swelling you’ll see in your legs and arms. This is called fluid overload. Your blood also holds on to more of your body’s waste products, making it more likely that you’ll feel sick. Too much of your body’s waste products in your blood is called uremia. 

Uremia and fluid overload can cause: 

you to feel weak and tired all the time 

shortness of breath 

high blood pressure between dialysis treatments 

blood pressure to go down or drop during dialysis 

inflammation of the heart muscle (swelling, redness, soreness) 

higher risk for infection 

problems with bleeding 

poor appetite, nausea, and real weight loss 

inability to tolerate exercise 

a bitter taste in your mouth 

yellow skin 

itchy skin” 

These are not exactly unprecedented times since there was the pandemic of 1918, but dialysis was not invented until the 1940s, so that’s not a lot of help.  

There are two types of dialysis. WebMD defines them: 

“Hemodialysis: Your blood is put through a filter outside your body, cleaned, and then returned to you. This is done either at a dialysis facility or at home. 

Peritoneal dialysis: Your blood is cleaned inside your body. A special fluid is put into your abdomen to absorb waste from the blood that passes through small vessels in your abdominal cavity. The fluid is then drained away. This type of dialysis is typically done at home.” 

Guess what cleans your blood. That’s right, dialysate. Does this mean you’re doomed if you’re on dialysis? Is this a blog of gloom and doom? No, not at all. In late February of this year, ABC 2 News in Baltimore shared the following:  

“A DaVita spokesperson wrote: 

‘Given the urgency of the situation, patients’ physicians temporarily adjusted prescriptions as we concurrently notified patients—both in person and in writing. These adjustments ordered by our patients’ physicians are backed by research and proven safe and effective.’ 

The National Kidney Foundation said treatments can safely be adjusted if patients are closely monitored. 

‘I would consider this approach as contingency management to avoid needing to go to crisis management,’ wrote Dr. Pavlesky.” 

Rest assured. You are being well taken care of. 

Until next week, 

Keep living your life! 

It’s the Month of….

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

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

“Asset Management Awareness Month 

Developmental Disabilities Awareness Month 

Endometriosis Awareness Month 

Irish-American Heritage Month 

Multiple Sclerosis Awareness Month 

National Athletic Training Month 

National Brain Injury Awareness Month 

National Breast Implant Awareness Month 

National Caffeine Awareness Month 

National Celery Month 

National Cerebral Palsy Awareness Month 

National Cheerleading Safety Month 

National Craft Month 

National Colorectal Cancer Awareness Month 

National Credit Education Month 

National Flour Month 

National Frozen Food Month 

National Kidney Month 

National Noodle Month 

National Nutrition Month 

National Peanut Month 

National Sauce Month 

National Trisomy Awareness Month 

National Umbrella Month 

National Women’s History Month 

National Social Work Month” 

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

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

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

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

“Protein 

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

The amount of protein you need is based on: 

your body size 

your kidney problem  

the amount of protein in your urine 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life!  

Say It Out Loud

I have a cousin I’m very friendly with who loves being a member of Toastmasters International. She’s been involved with them for years and years. Her opinion of them is that they help you express your message and that it’s fun. That, of course, got me to thinking. I wondered if Toastmasters could be useful in advocating for a transplant, especially your own transplant.  

Talk about serendipity! It was just about at this point in time that Leesa Thompson and I got to communicating. She’d had a transplant fairly recently and had been thinking along the same lines I was. One thing led to another, and I asked her if she would guest blog about her experience. She, in turn, approached Josiah Wolfson who explains why he joined the Virtual Kidney Stories Toastmasters Club. I find this exciting. What if all those that wanted transplants could advocate for themselves effectively? Let’s see what Josiah and Leesa, who worked together on this blog, have to say. 

(Josiah is the Vice-President in charge of Public Relations for the club. Leesa is the President.) 

JOIN THE VIRTUAL KIDNEY STORIES TOASTMASTERS CLUB AND IMPROVE YOUR ADVOCACY  

“Your ability to advocate for yourself may determine whether you live or die.” 

As a patient living with kidney disease, it may feel like you’re on your own. From one day to the next, you go from living your normal life to being diagnosed with an unfamiliar disease that rocks your world. It’s normal for things to get harder before they get easier and that can be overwhelming. Unfortunately, you can’t expect the system to work for you. You’re better off hoping for the best while expecting the worst. Taking the initiative by (a) getting clear on your treatment options and (b) advocating for yourself is the best way to improve your circumstances.  

There’s no guarantee that anyone will provide you with a comprehensive overview of your treatment options. So, you have to educate yourself. Spoiler alert, dialysis and kidney transplantation are the only two treatment options for kidney disease. It is undisputed that kidney transplantation is the better option for those patients healthy enough for the operation, but that requires a kidney donation.  

Advocating for yourself will take different forms at different times. It spans from fighting to be added to the UNOS Kidney Transplant Waitlist, to asking someone to consider becoming your lifesaving kidney donor. Putting yourself out there like this may scare you and will likely push you outside your comfort zone. These fears and insecurities stop more than half of kidney patients from asking someone to be a living kidney donor. Your ability to advocate for yourself may determine whether you live or die. 

Leesa Thompson, a recent kidney recipient, partnered with Toastmasters to create the Kidney Stories Toastmasters Club, a dedicated Toastmasters club focused on the kidney community. Leesa had experienced the empowering benefits of Toastmasters in a general community club that helped her find her voice to advocate for herself.  

Leesa went from battling chronic kidney disease for more than four decades to getting a lifesaving kidney transplant. By developing her advocate skills, she found a non-directed kidney donor within eight months of being informed that she would need to begin dialysis if she didn’t get a kidney transplant. Through social media, yard signs, newspaper articles, a magazine spread, an alumni spotlight, flyers, and calling cards, Leesa’s online story received over 32,500 views in only six weeks. Her efforts resulted in a stranger becoming her swap donor. Leesa has been a member of Toastmasters for sixteen months. She credits her improved public speaking, leadership skills, and heightened motivation to help others to Toastmasters.  

Leesa asked me to join the Kidney Stories Toastmasters Club and shared with me her vision of using the time-tested Toastmasters program to help the kidney community. The club mission is to provide a supportive and positive learning experience in which members of the kidney community are empowered to develop communication and leadership skills, resulting in greater self-confidence and personal growth in order to better advocate for themselves and others.  

Toastmasters International is a longstanding nonprofit organization that helps people find their voice in a safe space. Through its educational program and regular small group peer driven meetings, Toastmasters brings benefits such as: 

• Improved communication, public speaking, leadership, and soft skills; 
• Sharpened presentational skills; 
• More confident members who can think better on their feet; and 
• Increased team collaboration and networking. 

Photo by Mikhail Nilov on Pexels.com

I’m Josiah Wolfson and I joined the Kidney Stories Club because I want to help create a safe space for those in the kidney community to share their stories while also improving my own leadership and advocacy skills. On January 13, 2022, I donated a kidney to a stranger. I saw it as a simple cost benefit analysis that provided low risk of surgical or long-term complications and a couple weeks of recovery in exchange for saving a life. Sharing my transplant story publicly proved more challenging than the transplant itself. I created Kidney Abundance (@kidneyabundance) to promote living kidney donation because we could collectively solve the kidney shortage crisis if more people would donate a kidney. I feel fortunate to have the opportunity use my voice to advocate for such an important cause. Since joining the Kidney Stories Club, I have already had the opportunity to share my transplant story, receive constructive feedback about my speech, and network with others from the kidney community. The support and accountability I have received from the Kidney Stories Toastmasters Club has encouraged me to continue spreading my story.   

Join the Kidney Stories Toastmasters Club and see that you are not alone in your battle against kidney disease. Our next virtual meeting is on March 20, 2022, at 7:00-8:30pm (EST) and will be held every first and third Sunday of the month. Take this important step in developing skills to craft and deliver a persuasive speech that may just save your life. Email kidneystoriestoastmasters@gmail.com for the zoom link and membership information. 

Gail here. Consider this… and then send your email. If I needed a transplant, I certainly would. 

Until next week, 

Keep living your life! 

Black History Month and the Present

I’ll bet you thought I’d forgotten all about Black History Month. Not at all, dear readers, not at all. It’s just that since this is a yearly occurrence and I’ve been blogging about kidney disease for 14 years, it becomes harder and harder to uncover Black nephrologists I haven’t written about before. Of course, including current Black nephrologists changes the picture somewhat. This year, I turned to Blackamericanweb for some help and found it, 

“Dr. Velma Scantlebury [Gail here: sometimes she is referred to as Scantlebury-White.] is the first African American female transplant surgeon in America. She is currently the associate director of the Kidney Transplant Program at Christiana Care in Delaware. [Gail here again: actually, she retired last year.] With more than 200 live donor kidney transplants under her career, she holds extensive research credit in African American kidney donation led by Northwestern Medicine Transplantation Surgeon Dinee C. Simpson, MD, Dr. Scantlebury has stated that she refuses to retire until there are ten more Black women in transplant surgery in the United States. Currently there is only one other Black woman transplant surgeon.” 

And who is the other ‘Black woman transplant surgeon’? Could it be the Dinee C. Simpson mentioned above? I went to Northwestern Medicine’s site to find out. 

“The Northwestern Medicine African American Transplant Access Program (AATAP) … is committed to breaking down barriers to transplant care in the African American community through access to education, resources and world-class transplant care. Dr. Simpson, who is the first African American female transplant surgeon in Illinois, founded the program to address disparity in access to transplantation experienced by the Black community.” 

Nice, but two Black nephrologists do not a blog make. Thankfully, Black Health Matters came to the rescue: 

“Kirk Campbell, M.D. 

An associate professor in the Division of Nephrology and the Vice Chair of Diversity and Inclusion, as well as the director of the Nephrology Fellowship Program and an ombudsperson for medical students at the Icahn School of Medicine at Mount Sinai in New York. Kirk Campbell, M.D., treats patients with renal disease and leads an NIH-funded research program focused on understanding the mechanism of podocyte injury in the progression of proteinuric kidney diseases….  

Olayiwola Ayodeji, M.D.  

Nephrologist Olayiwola Ayodeji, M.D., has led the development of the Clinical Trials Program at Peninsula Kidney Associates and served as a principal investigator on many research trials. He currently serves as the Medical Director of Davita Newmarket Dialysis Center and the Davita Home Training Center. He is board certified in nephrology and internal medicine.  

Paul W. Crawford, M.D. 

A nephrology and hypertension specialist with a private practice in Chicago, Paul W. Crawford, M.D. has been practicing for more than 40 years. He is a graduate of Loyola University of Chicago/Stritch School of Medicine.    

Photo by William Fortunato on Pexels.com

Crystal Gadegbeku, M.D. 

A graduate of the University of Virginia, Crystal Gadegbeku, M.D., is a nephrology specialist in Philadelphia, Pennsylvania. She is Chief of the section of nephrology, hypertension and kidney transplantation, and Vice Chair of community outreach at Lewis Katz School of Medicine at Temple University. Her clinical interests include chronic kidney disease, hypertension in chronic kidney disease and pregnancy in chronic kidney disease.  

Eddie Greene, M.D. 

Mayo Clinic internist and nephrologist Eddie Green, M.D., treats chronic kidney disease, heart disease and kidney cancer. His interests include chronic renal failure, cardiovascular disease in chronic renal failure and renal cell cancer.  

Susanne Nicholas, M.D. 

Board certified in internal medicine and nephrology, Susanne Nicholas, M.D., has clinical interests in nephrology and hypertension. Her research over the past 15-plus years has led to the identification of a novel biomarker of diabetic kidney disease, which is being validated in clinical studies.  

Carmen Peralta, M.D. 

Clinical investigator and association professor of medicine Carmen Peralta, M.D., is co-founder and executive director of the Kidney Health Research Collaborative. She is a leader in the epidemiology of kidney disease and hypertension. A graduate of Johns Hopkins University, her research activity focuses on three areas: 1) approaches to improving care of people with kidney disease and reducing racial and ethnic disparities; 2) hypertension, arterial stiffness and kidney disease; and 3) biomarkers for detection, classification and risk of early kidney disease.  

Neil Powe, M.D. 

A graduate of Harvard Medical School, Neal Powe, M.D., is head of the University of California San Francisco Medicine Service at the Priscilla Chan and Mark Zuckerberg San Francisco General Hospital. This is one of the leading medicine departments in a public hospital with strong basic, clinical and health services research programs focused on major diseases affecting diverse patients locally, nationally and globally. His primary intellectual pursuits involve kidney disease patient-oriented research, epidemiology and outcomes and effectiveness research.  

Crystal Tyson, M.D. 

Located in Durham, North Carolina, Crystal Tyson, M.D., is a specialist in nephrology and renal medicine. “I enjoy building relationships with my patients and collaborating with them on how to best accomplish those goals with available therapies,” she says.  

As you can see, the Black community is currently represented in the field of nephrology. It might have been that the history of Black nephrologists was limited by not only race, but how new the field was. We need to remember that nephrology was not recognized as a specialty until the 1950s. 

However, Zippa.com: the Career Expert, had what I consider distressing news on their site. Last year, only 4.6% of nephrologists were Black, down from 5.21% in 2016. Could that be because Blacks were the lowest paid nephrologists? And why are they still the lowest paid nephrologists? I find this disturbing. Don’t you? 

Until next week, 

Keep living your life! 

The Hard Stuff

With marijuana being legalized in so many states and so much information about it more readily available, I started wondering what other drugs might do to chronic kidney disease patients. I don’t mean prescriptions, but substances like heroin or cocaine. So, I did what I always do: I researched it. I have a curious mind. 

Photo by Alena Shekhovtcova on Pexels.com

The National Kidney Foundation tells us in no uncertain terms, 

“Most street drugs, including heroin, cocaine and ecstasy can cause high blood pressure, stroke, heart failure and even death, in some cases from only one use. Cocaine, heroin and amphetamines also can cause kidney damage.” 

I wanted to know how they can do this and learned a new word in the process. This is from The Recovery Village, a rehabilitation center: 

“Essentially what happens with rhabdomyolysis is a breakdown of tissue during an overdose-related coma because the person has been not moving for an extended period. The muscles start to disintegrate and that produces chemicals, which then go into the bloodstream and set off other damaging reactions throughout the organs. This is one of the number one reasons for kidney failure. During this situation, heart damage and heart attack can also occur. 

Also, people who use heroin intravenously may be more likely to contract infections that can lead to kidney inflammation, and for people who inject heroin under the skin, there’s an increased chance of getting secondary amyloidosis. This is a buildup of protein in organs and tissues that can lead to kidney failure.” 

By the way, you’re right if you guess the new word is rhabdomyolysis. Amyloid may be another word you need defined since it’s helpful in understanding the definition of amyloidosis. That’s what the Merriam-Webster Dictionary is for: 

“a waxy translucent substance consisting primarily of protein that is deposited in some animal organs and tissues under abnormal conditions (such as Alzheimer’s disease)” 

Worser and worser, as I image Alice from Alice in Wonderland might say. But we’re not done yet, DrugAbuse.com explains why street drugs are even worse for us as CKD patients than we may have thought: 

“Drugs and alcohol are no exception when it comes to the renal filtration process; in fact, the majority of abused substances are excreted through the kidneys …. 

There are a few factors that influence the kidneys’ ability to expel drugs, such as…: 

The acidity of urine. 

The kidneys’ condition. 

Circulation through kidneys. 

Urine flow. 

Kidney functioning can be negatively impacted by….: 

Exposure to toxins. 

Aging. 

Hypertension. 

Diabetes. 

Persistent kidney infections. 

Nephrolithiasis (kidney stones). 

In some cases, if the kidneys are not functioning properly, the effects of a drug may be amplified and thus, the kidneys are more easily prone to toxicity from the substance…. This can be particularly dangerous for someone suffering from an addiction to drugs or alcohol who is often increasing their dose to counteract tolerance.” 

So, it’s not just using street drugs that’s dangerous for our kidneys. It’s also that the more you use street drugs, the more you need for the high you seek. That further damages your kidneys. 

In some instances, these street drugs can cause kidney disease in people who had normal kidneys before the use of street drugs. This is from the American Addiction Centers, 

“Drug abuse can also impact the functioning of the kidneys. If the kidneys are not functioning properly, the effects of drug use can be amplified, and this can lead to further issues with the kidneys. For instance, individuals who develop tolerance to alcohol or drugs often significantly increase the amount of the substances they use, and this can contribute to problems with toxicity and kidney functioning over time. 

Chronic abuse of drugs or alcohol can lead to severe kidney damage and even to kidney failure. Substance abuse may directly damage the kidneys or may indirectly damage them through some other process, such as increased body temperature or rhabdomyolysis (the breakdown of muscle tissue in the release of cells in the bloodstream).” 

Hmmm, that could mean that if you didn’t have CKD when you started using street drugs, you may develop it by using these street drugs. To make it worse, it’s not always CKD, which is a decline in your kidney function for at least three months. Street drugs can also cause Acute Kidney Injury [AKI], which is defined by MedScape as: 

“…, is commonly defined as an abrupt decline in renal function, clinically manifesting as a reversible acute increase in nitrogen waste products—measured by blood urea nitrogen (BUN) and serum creatinine levels—over the course of hours to weeks.” 

Hours to weeks. It doesn’t take long for street drugs to affect your kidneys in some cases.   

Another treatment center, Sunrise House Treatment Center has some interesting information about street drugs and what they do to our kidneys, 

“Some drugs of abuse can damage the kidneys more than others. Here are some substances that cause kidney damage or renal failure: 

…. Benzodiazepines: When abused, these psychiatric prescription medications can cause rhabdomyolysis, or the breakdown of muscles that damages the kidneys. 

Cocaine: This potent stimulant can lead to rhabdomyolysis, or the breakdown of muscle tissue that poisons the blood and eventually the kidneys. The drug is toxic to the kidneys in multiple other ways, usually involving blood circulation through the organs and how the kidneys are able to filter out toxins to convert to urine. People who abuse cocaine for a long time are much more likely to suffer kidney damage or renal failure than the general public. 

…. MDMA: This club drug can cause kidney failure from dehydration, chemical adulterants, and hyperthermia (overheating), leading to muscle breakdown. 

Methamphetamines: Crystal meth and other versions of methamphetamines break down muscles and release toxins into the system that the kidneys cannot filter properly. 

Opioids: Heroin is especially toxic to the kidneys, in part due to the adulterants found in this street drug. However, any opioid drug can cause damage to the kidneys through muscle breakdown. 

Synthetic marijuana: Kidney damage can occur rapidly due to toxins in any synthetic drug, but it can occur particularly quickly due to abuse of synthetic cannabinoids like K2 or Spice. These lab-created chemicals are similar in structure to cannabinoids like THC, but they do not have the same effects on the brain. Because they are made with artificial chemicals, there are many other molecules in them that can be very harmful to the body. Additionally, these unregulated drugs contain vastly different doses of the intoxicating substance, so dosing is nearly impossible, which can rapidly lead to overdose. Kidney failure is one consequence of overdosing on synthetic marijuana.” 

Notice it’s synthetic marijuana that can cause kidney damage. But I think I’ll continue to get my high from watching my grandson’s antics anyway. 

Until next week, 

Keep living your life!  

Skin Deep

 Holy Cow! It’s the last day of January already. One down, 11 more to go. That’s quite a bit of time to get 2022 to be different from 2020 [As Natalie Gelman sings] and 2021. Do we ever need that to happen.  

Photo by Kampus Production on Pexels.com

For example, I had a dermatology appointment recently. Before I exited my car, I made sure my N95 was in place and hang what my hair looked up with those straps mangling it. Then, I approached the no contact thermometer. No fever. Great, now I could stand six feet away from the person in front of me waiting to check in. Once she was done, I was handed a freshly cleaned iPad upon which to check in. The waiting room was enormous… and there were exactly three people waiting. Finally, it was my turn. 

I had just enough time to start wondering what, if anything, chronic kidney disease had to do with the condition of your skin. Well, that was one good thing; due to the pandemic, there’s now a very short waiting time to see your doctor. [I’d rather go back to long waits and no pandemic.] 

One thing I remembered about CKD and your skin was that once you have a transplant, you are more vulnerable to skin cancer. In fact, a transplanted friend just when through this. Apparently, his sun hat and sun block weren’t enough. Now he uses zinc oxide on his nose, too. Come to think of it, he’s the second person I know personally who’s gone through this. 

What else? Are there other connections between CKD and your skin? Let’s find out. 

New-Medical, Life Sciences, which is based in the UK and Australia, taught me a new word and, unfortunately, a new condition: 

“Xerosis 

Xerosis is a condition that is characterized by dry and rough skin. The patient usually experiences scaling, fissures, and general discomfort. About 50-75% of dialysis patients experience this particular skin issue. The cracks that can develop in the skin increases the chance for further infection from viruses or bacteria present in the environment. 

Management of xerosis includes: 

Emollients: Moisturizers and emollients can soothe dry, scaly skin. 

Avoiding hot water and humidifiers: Too much hot water can further aggravate skin issues and cause excess drying. 

Bath oils: Bathing in natural oils can further moisturize the skin. 

Steroid cream: Medical creams can help alleviate itching.” 

I have seen this, but living in Arizona, presumed it was from too much exposure to the sun. As you can see, I learn as much as you do by writing these blogs. 

I decided to turn to some of my usual search sites. Medscape did not disappoint, although we will need a vocabulary lesson with this information.: 

“Pigmentary alteration occurs in 25-70% of the dialysis population and increases over time. A multitude of uremia-related changes are responsible for the pigmentary alterations. Before the widespread use of erythropoietin, pallor was common and was attributed to the significant anemia. A brown–to–slate-gray discoloration may occur as a result of hemosiderin deposition in association with iron overload from excessive transfusions. Over time, many patients develop a yellowish hue, which has been attributed to retained urochromes and carotene, which are subsequently deposited in the epidermis and subcutaneous tissues. A brownish hyperpigmentation is common, mostly in a sun-exposed distribution. This hyperpigmentation results from an increase in melanin production because of an increase in poorly dialyzable beta-melanocyte stimulating hormone.” 

Now for that vocabulary lesson. I bolded the words above that will be defined below. 

Hemosiderin: “Hemosiderin staining is a medical condition in which one presents yellow or brown patches on the skin. These are in fact the result of the macrophages [Gail here: these are a type of white blood cell] consuming the dead red blood cells, leading to the production of hemosiderin.” [MDDK.com] 

Urochrome: “a yellow pigment to which the color of normal urine is principally due.” [Merriam-Webster Dictionary]

Carotene: “Yellow-red pigments widely distributed in plants and animals, notably in carrots; include precursors of vitamin  A.” [Medical Dictionary for the Dental Professions]   

Beta-melanocyte stimulating hormone: “The major biological property of b-Melanocyte Stimulating Hormone is hyperpigmentation.” [InterScience Institute] 

There’s another way that CKD affects your skin. Have you heard the term pruritus? We know the suffix ‘us’ means prone to, but what about ‘prur’? ETYMOLOGEEK tells us, 

“English word pruritus comes from Proto-Indo-European *prews-, and later Latin prurio (I itch or tingle. I long for.) ”Apologies for that sidestep. Old English teachers never die, you know. Let’s get back on track.  

DermNet Az tells us that pruritus means, 

“Pruritus is the medical term for itch. Itch is an unpleasant sensation on the skin that provokes the desire to rub or scratch the area to obtain relief. Itch can cause discomfort and frustration; in severe cases it can lead to disturbed sleep, anxiety and depression. Constant scratching to obtain relief can damage the skin (excoriation, lichenification) and reduce its effectiveness as a major protective barrier.  

Pruritus is often a symptom of an underlying disease process such as a skin problem, a systemic disease, or abnormal nerve impulses.” 

CKD is a systemic disease. 

How about one more? Moon face is a term often used instead of the medical term moon facies. MedicineNet elucidates, 

“Moon face, otherwise known as moon facies, is a medical sign characterized by the face developing a rounded appearance due to fat deposits on the sides of the face. 

The most common cause of moon face is said to be associated with Cushing’s syndrome or prolonged steroid treatment (especially corticosteroids).“ 

Healthline further explains,  

“One of the most common causes of moon face is the steroid medication prednisone. Prednisone is prescribed for a variety of conditions because it helps reduce swelling and inflammation. 

You might be prescribed prednisone if you’ve had an organ transplant….” 

That includes kidney transplants. 

You know that old song,  

“Your thigh bone connected to your hip bone 
Your hip bone connected to your back bone”? 

Well, it turns out your inner organs are connected to your outer organ, too. Hey, did you know that your skin is the largest organ? 

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!  

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! 

It’s Only Logical

 For the last two years I’ve been grappling with exercise. I know it’s necessary, but I don’t want to do it. I keep telling myself that I’ll get over it; it being my need for control ever since I had cancer. I couldn’t control that, but I could control whether or not I exercised. I know it’s more than a little bit ridiculous, but the emotions don’t always listen to logic. Over a decade ago I wrote my first chronic kidney disease book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. I included a chapter on exercise. Maybe that would help. I didn’t want to copy the entire chapter for today’s blog, so here you have what I consider the relevant parts. Maybe it’ll help you, too, if you’re having the same problem as I am. I know from reader comments that many of us are in the same exercise boat. Ready? Let’s start rowing. 

“I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglyceride levels. 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. 

I researched, researched, and researched again. Each explanation of what exercise does for the body was more complicated than the last one I read. 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 intensity your activity…. 

I’ve discovered articles that say you need to exercise every day, and those that say you need to take a day or two off each week.  Frankly, I’m at the point where I try for every day but remember the articles that say take a day or two off each week if I don’t get to make the time every day that week.  I don’t know if it’s a function of age or not, but sometimes the day slips away, and I haven’t exercised yet.   

Photo by MART PRODUCTION on Pexels.com

For me, planning is important.  For example, I’m going dancing tonight, [Update: Covid put an end to that.] so I know I don’t have to stop writing to exercise.  Yesterday, I did – so I figured that since I can’t sit still at the computer for more than two hours at a time, I’d use the exercise bike [Update: long gone in deference to my knees and hip] and watch a movie during my second computer break.  The day before, I had appointments left and right without too much time for myself, so I had my coffee in the morning then used a one mile walking tape.  I usually use a three mile tape, but knew time was going to be tight that day and figured one mile was better than no miles…. 

There are days when an arthritic hip prevents me from doing any full body exercise.  I make sure no one is watching, then I dance vigorously but only from the waist up.  If it’s summertime here, I can water walk without too much pain when the arthritis acts up. [Update: Covid ended that, too.] 

The point is that exercise is going to help you impede the progress of your CKD.  Learn to at least tolerate exercise, if you can’t learn to love it.”    

This was written over 11 years ago and seems a bit simplistic. Let’s see what newer information there is about exercise and ckd. BMC, a research publisher, included a 2019 study by BMC Nephrology which concluded: 

“…exercise therapy may be a potential strategy to improve eGFR, reduce SBP, DBP and BMI in non-dialysis CKD patients. Limited evidence from short-term studies suggests that exercise may reduce TG, but not Scr, TC, HDL or LDL.” 

Don’t worry. They also included definitions for the abbreviations: 

“SBP: Systolic blood pressure 

DBP: Diastolic blood pressure 

BMI: Body mass index 

TG: Triglyceride 

SCr: Serum creatinine 

TC: Total cholesterol 

HDL: High density lipoprotein 

LDL: Low density lipoprotein” 

This sounds suspiciously like the list of what exercise can do for anyone, not just ckd patients, except for one very important aspect: eGFR. That’s your estimated glomerular filtration rate. In other words, it’s the evaluator of your kidney health. The higher the function, the better your kidneys are working. 

My eGFR just tanked to 40, almost the lowest it’s ever been. It’s probably due to using two different kinds of insulin, but that’s a blog for another day. The point is that exercise became part of my daily routine as soon as I saw that blood test result. Enough of these emotive issues. Time to return to logic. 

As for lowering both parts of your blood pressure, that’s good news too since high blood pressure is the second most common cause of ckd here in the USA. By the way, systolic is the top number which measures your heart rate when blood is being pumped to all parts of your body. Diastolic is the bottom number which measure your heart rate when your heart is at rest. 

Lowering your BMI is also a boon. Excess weight may lead to diabetes which, in turn, could lead to ckd. According to the NCBI [National Center for Biotechnology Information], 

“A high body mass index is one of the strongest risk factors for new-onset CKD. In individuals affected by obesity, a compensatory hyperfiltration occurs to meet the heightened metabolic demands of the increased body weight. The increase in intraglomerular pressure can damage the kidneys and raise the risk of developing CKD in the long term.”   

Got it. Let’s both get off the computer and get moving. 

Until next week, 

Keep living your life! 

Are You Sure About That?

I just made a neurology appointment for my husband since he has Alzheimer’s. That got me to thinking. What about us? Are chronic kidney disease patients also in need of a neurologist? It may seem an odd question to you, but we are already aware of brain fog caused by ckd. That’s neurological. What else should we know about? 

Wait, I’m rushing again. How about a reminder of what brain fog is? HealthCentral was helpful here: 

Photo by SHVETS production on Pexels.com

“People with kidney disease sometimes describe themselves as feeling like they have ‘brain fog’—a nice-ish way of saying they are muddled in their thinking, have trouble concentrating, and keep forgetting things. These symptoms can have several kidney disease-related causes. For one, ‘low iron levels can lead to cognitive problems or dizziness because you have fewer red blood cells transporting oxygen to your brain,’ …. Confusion may also be a result of high toxin levels in your brain. Elevated protein levels, a hallmark of CKD, can affect brain function as well.” 

I’ve written about brain fog before, and it seems to be accepted by the ckd community. But what else is there that we don’t know in regard to our neurological health when we have ckd? 

verywellhealth has quite a bit of information about neuropathy and ckd:  

“Neuropathy is nerve damage that causes tingling, numbness, pain, and other abnormal nerve sensations in the peripheral nerves (i.e., those of the arms and legs). It can occur for several reasons. Uremic neuropathy is a type that affects patients with advanced kidney disease or end-stage kidney disease patients who are on dialysis…. 

Unfortunately, neuropathy is very common in those with kidney disease. It may be related to nutrient imbalances, aspects of dialysis, or common overlapping conditions. The nerve damage may be permanent and get worse over time…. 

People with advanced kidney disease or those on dialysis have a higher risk for uremic neuropathy…. 

The reason(s) for this are unclear, but it could be that: 

Nerves tend to degenerate in kidney failure. Deficiencies of essential nutrients like thiamine (vitamin B1) or an excess of zinc might contribute…. 

Other diseases common in dialysis patients, like hyperparathyroidism, may be to blame…. 

Certain kinds of neuropathy, like carpal tunnel syndrome, seem to occur more frequently in the arm with dialysis access. A drop in blood supply to the nerves in the hand might be a contributing factor…. 

An increase in pressure due to dialysis access can lead to excess fluid or blood in the surrounding tissues, which might compress a nerve…. 

High phosphorus levels may cause calcium phosphate deposits to form, which could contribute to neuropathy…. 

With objective testing, more than half of dialysis patients could have signs of a nerve problem…. Those who don’t get the minimum prescribed amount of dialysis have a higher risk of developing neuropathy….However, not everyone with neuropathy and kidney disease is on dialysis.” 

Now, we know that I developed neuropathy from having chemotherapy and others have developed neuropathy via their diabetes. Did you know about CKD neuropathy? I must admit that I didn’t. 

I feel compelled to take a moment to remind you that not every CKD patient ends up with these neurological effects and, should they develop one, it can be in varying degrees. For example, my neuropathy is not painful, nor does it curtail my activities, but it is evident. My buddy with neuropathy says she’s barely aware of hers.

 I was sorry to discover that stroke may be one of the neurological side effects of CKD. AHA Journal printed an abstract on June 3 of this year which explains the whys and wherefores of stroke if you have ckd: 

“The global health burden of chronic kidney disease is rapidly rising, and chronic kidney disease is an important risk factor for cerebro-vascular disease. Proposed underlying mechanisms for this relationship include shared traditional risk factors such as hypertension and dia-betes, uremia-related nontraditional risk factors, such as oxidative stress and abnormal calcium-phosphorus metabolism, and dialysis-specific factors such as cerebral hypoperfusion and changes in cardiac structure. Chronic kidney disease frequently complicates routine stroke risk prediction, diagnosis, management, and prevention. It is also associated with worse stroke severity, outcomes and a high burden of silent cerebrovascular disease, and vascular cognitive impairment.” 

I was wondering what else I hadn’t even thought of until I started researching the neurological aspects of ckd. I found this information on Medscape: 

 “Uremic encephalopathy is an organic brain disorder. It develops in patients with acute or chronic renal failure, usually when the estimated glomerular filtration rate (eGFR) falls and remains below 15 mL/min….  

Manifestations of this syndrome vary from mild symptoms (eg, lassitude, fatigue) to severe signs (eg, seizures, coma). Severity and progression depend on the rate of decline in renal function; thus, symptoms are usually worse in patients with acute kidney injury. Prompt identification of uremia as the cause of encephalopathy is essential because symptoms are read-ily reversible following initiation of dialysis….^“ 

Again, not every CKD patient will develop this, nor will all those that do have severe symptoms. The idea of the blog is to educate, not scare. Some of us are in a fragile mindset just from being diagnosed. I’ve been diagnosed for over 13 years and was unaware of everything I wrote about today with the exception of brain fog and neuropathy.  

One more before we end.  

“The incidence of uremic seizures with kidney failure is ∼10%. These seizures are often nonconvulsive and may mimic uremic encephalopathy. Recognition and management of such situations may be challenging for treating physicians who are non-neurologists,” according to PubMed. 

Be aware that ∼ means approximately equal to. Another way to look at this is that ∼90% of kidney failure patients don’t develop uremic seizures. 

While these ckd side effects are considered common, they don’t seem to be discussed very much. I know my nephrologist has only discussed the first two with me. I speak with CKD patients all the time and none of them has ever mentioned the others, either. Is it possible that these are not as common as researchers think they are? Keep in mind that I’m not a doctor nor a professional re-searcher and this is simply my opinion.  

Until next week, 

Keep living your life! 

That Old, Familiar Feeling

Can you hear me laughing? I’ve been nauseous for a while. I know, I know. I was taking an antibiotic that could make me nauseous. I acknowledged that. I’m laughing because my next thought was of pregnancy. Hah! I’m 74 and decades past menopause. 

 So why the nausea? It turns out that it’s my ridiculously high blood glucose levels. It spiked while I was taking an antibiotic for a urinary tract infection and has continued to spike. It never occurred to me that it would continue to spike once I ended the antibiotic. My endocrinologist was surprised too. 

Type 2 diabetes entails high blood sugar, insulin resistance, and insufficient insulin production. Guilty on all three counts. I’d already had type 2 diabetes before two thirds of my pancreas was removed but didn’t take it seriously since my blood sugars were only a little high sometimes with the medication I was taking. I certainly take it seriously now. My endocrinologist and I stopped the glipizide I’d been prescribed for the high blood sugar and started working with straight insulin. So straight that I inject it directly into my stomach. Every other day we increase the dosage. We have not found the sweet spot yet. I say we because my endocrinologist and I are working very closely on this. 

Enough background. Let’s take a look at the connection between high blood glucose [sugar] and nausea. Enterade, while a company that deals with products to make you more comfortable while undergoing cancer treatment, neatly explains how nausea works: 

“Nausea is controlled by a part of the autonomic nervous system which controls involuntary body functions (such as breathing or digestion)”. 

 We already know that it could be a side effect of certain medications or pregnancy. Common knowledge also is that seasickness causes nausea. MedicalNewsToday offers other explanations: 

“…. Diabetes is a common cause of a digestive disorder called gastroparesis. Gastroparesis affects how the stomach contracts, meaning that food passes more slowly into the intestine…. 

Pancreatitis occurs when the pancreas becomes swollen and inflamed. People living with diabetes have a higher risk of developing pancreatitis…. 

Diabetic ketoacidosis occurs when blood sugar levels become very high, and ketones [Gail here: These are the byproducts when fat is broken down for energy.] build up to dangerous levels in the blood. It can be life-threatening and is a medical emergency….” 

It would be a cosmic joke if the one third of my pancreas still remaining after the distal pancreatectomy I underwent for pancreatic cancer were experiencing pancreatitis. That’s just how my mind works: humor first. 

But I digress. So here I am with nausea. I know I can take the same anti-emetic [anti-nausea and vomiting drug] I took during chemotherapy, but I do not want to add yet another drug to my regimen. Surely, there are home remedies. Oh, look, The Cleveland Clinic suggests some ways to prevent nausea. If possible, I’d rather prevent than treat.  

“Nausea can be prevented by: 

Eating small meals throughout the day instead of three large meals 

Eating slowly 

Avoiding hard-to-digest foods 

Consuming foods that are cold or at room temperature to avoid becoming nauseated from the smell of hot or warm foods 

Resting after eating and keeping your head elevated about 12 inches above your feet helps reduce nausea. 

If you feel nauseated when you wake up in the morning, eat some crackers before getting out of bed or eat a high protein snack (lean meat or cheese) before going to bed. Drink liquids between (instead of during) meals, and drink at least six to eight 8-ounce glasses of water a day to prevent dehydration. Try to eat when you feel less nauseated.” 

All right, that’s good information but what if we miss our window to avoid nausea. How do we deal with it then? I went to my old favorite WebMd for some suggestions. 

“Home treatments can help relieve nausea. 

Drink water, sports drinks, or broths. Juices and soft drinks should be avoided. 

Eat as tolerated, but only light, bland foods, such as crackers or plain bread to begin with. If your nausea is chronic, you’ll need to find a variety of vegetables and proteins that don’t upset your stomach to maintain proper nutrition. 

Stay away from fried or greasy foods. 

Steer clear of sweets. 

Eat small meals and eat them slowly. 

Rest a while after eating with your head elevated.” 

Don’t forget that acupuncture and acupressure can be helpful for relieving nausea.

Photo by Pressmaster on Pexels.com

I realize there are other causes of nausea I haven’t mentioned. I did mention seasickness, but there’s also car sickness, plane sickness, any kind of motion sickness. Then there’s taking pills on an empty stomach. [Bear is fastidious about this one.] Let’s not forget eating too much or, conversely, eating too little. And, of course, drinking too much alcohol. What I find interesting it that ‘too much’ or ‘too little’ is unique to the person.  

Here’s one you probably hadn’t thought of as a cause of nausea: stress. Considering the state of the world today with Covid and its variants, I’m going to deal with this a bit. I went to milltain, a Netherlands-based group devoted to eliminating stress in your life to see if I could find some information there. 

“…. The researchers suspect that depression and anxiety [Gail yet again: anxiety is a reaction to stress.] cause decreased activity of the vagus nerve. This is the cranial nerve that controls many of your intestinal processes. 

This nerve in your brain is also less active whenever you’re anxious. This will cause you to feel nauseous, which causes your vagus nerve to be even less active…. Your stomach produces less gastric acid in this stage and your stomach functioning is slowed down by the vomiting centre in your brain. You produce more saliva (to protect your teeth against the gastric acid) and food is pushed back up from the duodenum. [Gail again: That is if the nausea process continues.]”  

I’m starting to think I have more information than I need for us to understand the connection between nausea and diabetes. So, I’ll end here. 

Until next week, 

Keep living your life! 

It Never Made Me Laugh

What never made me laugh, you ask. Laughing gas. Well, let’s use its official name – nitrous oxide. If you think that’s odd, wait until you read this … your kidneys produce nitric oxide.  

Photo by Anna Shvets on Pexels.com

I think I’d better mention right out of the gate that, although both have nitrogen, they are not the same. DifferenceBetween.com explains: 

“Nitric oxide is the molecule with the chemical formula NO, and the chemical formula of nitrous oxide is N2O. Therefore, by looking at the formula we can say that the nitric oxide has only one nitrogen atom and nitrous oxide has two nitrogen atoms.” 

So, we are really not discussing laughing gas anymore [although it made for a good introduction]. We’ll be dealing with nitric oxide. 

According to Nature Views Nephrology: 

“Nitric oxide and other bioactive nitrogen species have pivotal roles in multiple physiological functions, including modulation of the kidney, cardiovascular and metabolic systems; in the kidney, nitric oxide has a crucial role in autoregulation and modulation of tubular transport…. 

Reduced nitric oxide bioactivity has been associated with ageing and kidney, cardiovascular and metabolic disorders, which are often coupled with oxidative stress.” 

Let’s see if we can take a closer look at what nitric oxide does in your kidneys. 

NCBI, The National Center for Biotechnology Information – which is part of the United National Library of Medicine, which in turn, is part of the National Institutes of Health tells us: 

“Nitric oxide has been implicated in many physiologic processes that influence both acute and long-term control of kidney function. Its net effect in the kidney is to promote natriuresis and diuresis, contributing to adaptation to variations of dietary salt intake and maintenance of normal blood pressure…. 

In chronic kidney diseases, the systolic [That’s the top number, in case you’ve forgotten.] blood pressure is correlated with the plasma level of asymmetric dimethylarginine, an endogenous inhibitor of nitric oxide synthase. A reduced production and biological action of nitric oxide is associated with an elevation of arterial pressure, and conversely, an exaggerated activity may represent a compensatory mechanism to mitigate the hypertension.”   

Hmmm, maybe we’ll understand that better if we had a few definitions under our collective belt. Back to my favorite dictionary, the Merriam-Webster Dictionary. 

“endogenous – 1: growing or produced by growth from deep tissue 

2a: caused by factors inside the organism or system 

  b: produced or synthesized within the organism or system 

           [Looks like #2b will work for us.] 

synthase – any of various enzymes that catalyze the synthesis of a substance without involving the breaking of a high-energy phosphate bond (as in ATP) 

natriuresis – loss of sodium in the urine 

 diuresis – an increased excretion of urine” 

It seems to me that what the NCBI is basically saying is that if the nitric oxide in your kidney is not doing its job, your blood vessels don’t expand as they should, and you have high blood pressure. In addition, as we’ll learn right now, you could have more brain fog. Remember here, I’m not a doctor and have never claimed to be one. Moving on…  

A local brain wellness center, Renovare Brain Wellness, offers more information: 

“Nitric oxide expands the blood vessels, increases the blood flow, and decreases plaque formation and blood clotting…. 

On the average, we lose 10 percent of our body’s ability to make nitric oxide for every decade of life. By the age of 40, studies show that we make 50% less Nitric oxide than we did as a teenager.” 

I’m 74; this would mean that I have lost a whooping 70% [almost 75%?] of my nitric oxide production. No wonder my blood pressure is out of whack, to say nothing of my brain fog. 

I attempted to discover exactly how this process works but found the research too technical for me. Even using the dictionary, I could not quite understand what I was reading. I’ll bet your nephologist could explain it in simple terms. I intend to ask mine when I see him. 

On another subject, several years ago, before cancer and Covid which have kept me home for three years,

I joined others at the American Association of Kidney Patients’ Meeting in Tampa, Florida. I met many people in the kidney community there. Some I still work with. Some I’ve lost track of. Some helped me out with guest blogs when I was incapacitated by the cancer.

One of these people is James Myers. He is definitely a kidney warrior. Are you aware of James Myers’ multiple kidney groups on Facebook? Not to make light of the subject, but he’s got something for everyone. 

Kidney Advocates 

Kidney Writers 

Pre-Emptive Kidney Transplants 

Kidney Success Stories 

Kidneys and Diabetes 

Take Care of Your Kidneys 

Acute Kidney Injury 

Kidneys and Science 

Home Dialysis 

Kidneys and Your Heart 

This is only a partial list of his Facebook groups. He’s also posted and been interviewed on other Facebook kidney groups such as Urban Outreach and AAKP’s page. He is a fount of information… and a good guy. Take a look. We all need a bit of support at some time in our kidney journey. 

I have a little vent to end today’s blog. As mentioned above, I’ve been housebound [except for medical appointments] for about three years. I am busy writing and taking care of Bear, but one thing I never am is bored. I don’t understand those that can’t find something in their homes they want to do. Or maybe a hobby they want to pursue. Others I know have started online businesses, finished their degrees, finally took the time to learn about that thing they’re obsessed with. Are you bored? Is there nothing that interests you enough to pursue it? Maybe you can help me understand. 

Until next week, 

Keep living your life! 

That’s Harsh

When I had the distal pancreatectomy two years ago [still cancer free!], my spleen had to go, too, since the tumor was wrapped around it. Or was it the artery feeding it? I don’t remember, but either way, my spleen is gone. That’s not great. According to Britain’s National Health Service, 

“The spleen has some important functions:  

it fights invading germs in the blood (the spleen contains infection-fighting white blood cells)  

it controls the level of blood cells (white blood cells, red blood cells and platelets)  

it filters the blood and removes any old or damaged red blood cells.” 

3D Illustration Concept of Spleen a Part of Human Internal Organ System Anatomy X-ray 3D rendering

While I’ve had all the necessary vaccines to accommodate my being spleen less, I’m still at a disadvantage. True, your liver, bone marrow, and lymph nodes take over some of the spleen’s work once it is removed. But I’m already immunocompromised by having chronic kidney disease… and so are you.  

You probably remember that the endodontist had me take a regiment of penicillin as soon as he started to drill that hole in my head [tooth, really] that you read about last week. Now, I have a urinary tract infection. My primary physician ordered Cipro for me right away. 

But what is that? I got my answer at WebMD, 

“This medication is used to treat a variety of bacterial infections. Ciprofloxacin belongs to a class of drugs called quinolone antibiotics. It works by stopping the growth of bacteria. This antibiotic treats only bacterial infections. It will not work for virus infections (such as common cold, flu). Using any antibiotic when it is not needed can cause it to not work for future infections.” 

Hmmm, my sister-in-law had taken this when she had pneumonia and ended up with some pretty awful side effects. What I found on Medline Plus about ciprofloxacin [Cipro is the brand name.] convinced me this is a harsh drug. 

Photo by Kindel Media on Pexels.com

“IMPORTANT WARNING: 

Taking ciprofloxacin increases the risk that you will develop tendinitis (swelling of a fibrous tissue that connects a bone to a muscle) or have a tendon rupture (tearing of a fibrous tissue that connects a bone to a muscle) during your treatment or for up to several months afterward. These problems may affect tendons in your shoulder, your hand, the back of your ankle, or in other parts of your body. Tendinitis or tendon rupture may happen to people of any age, but the risk is highest in people over 60 years of age. Tell your doctor if you have or have ever had a kidney, heart, or lung transplant; kidney disease; a joint or tendon disorder such as rheumatoid arthritis (a condition in which the body attacks its own joints, causing pain, swelling, and loss of function); or if you participate in regular physical activity. Tell your doctor and pharmacist if you are taking oral or injectable steroids such as dexamethasone, methylprednisolone (Medrol), or prednisone (Rayos). If you experience any of the following symptoms of tendinitis, stop taking ciprofloxacin, rest, and call your doctor immediately: pain, swelling, tenderness, stiffness, or difficulty in moving a muscle. If you experience any of the following symptoms of tendon rupture, stop taking ciprofloxacin and get emergency medical treatment: hearing or feeling a snap or pop in a tendon area, bruising after an injury to a tendon area, or inability to move or to bear weight on an affected area. 

Taking ciprofloxacin may cause changes in sensation and nerve damage that may not go away even after you stop taking ciprofloxacin. This damage may occur soon after you begin taking ciprofloxacin. Tell your doctor if you have ever had peripheral neuropathy (a type of nerve damage that causes tingling, numbness, and pain in the hands and feet). If you experience any of the following symptoms, stop taking ciprofloxacin and call your doctor immediately: numbness, tingling, pain, burning, or weakness in the arms or legs; or a change in your ability to feel light touch, vibrations, pain, heat, or cold. 

Taking ciprofloxacin may affect your brain or nervous system and cause serious side effects. This can occur after the first dose of ciprofloxacin. Tell your doctor if you have or have ever had seizures, epilepsy, cerebral arteriosclerosis (narrowing of blood vessels in or near the brain that can lead to stroke or ministroke), stroke, changed brain structure, or kidney disease. If you experience any of the following symptoms, stop taking ciprofloxacin and call your doctor immediately: seizures; tremors; dizziness; lightheadedness; headaches that won’t go away (with or without blurred vision); difficulty falling asleep or staying asleep; nightmares; not trusting others or feeling that others want to hurt you; hallucinations (seeing things or hearing voices that do not exist); thoughts or actions towards hurting or killing yourself; feeling restless, anxious, nervous, depressed, memory changes, or confused, or other changes in your mood or behavior. 

Taking ciprofloxacin may worsen muscle weakness in people with myasthenia gravis (a disorder of the nervous system that causes muscle weakness) and cause severe difficulty breathing or death. Tell your doctor if you have myasthenia gravis. Your doctor may tell you not to take ciprofloxacin. If you have myasthenia gravis and your doctor tells you that you should take ciprofloxacin, call your doctor immediately if you experience muscle weakness or difficulty breathing during your treatment….” 

There’s more, much more, but these are the parts that may deal with us. There was also a warning that you may need to take your blood glucose readings more often if you have diabetes and take Cipro. Diabetes is the number one cause of CKD and CKD is the number one cause of diabetes. How many of us have diabetes?  

Did you notice that you need to inform your doctor if you had kidney disease or have had a kidney transplant? Or that it may cause peripheral neuropathy? I’ve had that since chemotherapy two years ago. And, of course, you all know I have CKD. 

So, my primary care physician knows I have kidney disease, diabetes, peripheral neuropathy, and am over 60. Then why did she prescribe this harsh antibiotic for my current urinary tract infection? Michigan Medicine on the University of Michigan’s Health site gives it to us in one sentence: 

“Ciprofloxacin should be used only for infections that cannot be treated with a safer antibiotic.” 

Until next week, 

Keep living your life! 

There’s a Hole in My Head

I’m in the middle of having a root canal. The last time I had one was just about the time I was diagnosed with chronic kidney disease, a little more than 13 years ago. Since then, I’ve written about periodontal issues, dry mouth, Novocain, but not about the connection between diabetes, ckd, and dental issues. That’s what I’ll be dealing with today. 

Let’s start at the very beginning with an explanation of root canal. The American Association of Endodontists [Endodontists treat the soft tissue inside your teeth.] had an easily understood explanation: 

“Endodontic treatment can often be performed in one or two visits and involves the following steps: 

The endodontist examines and takes a radiograph of the tooth using x-rays, then administers local anesthetic. After the tooth is numb, the endodontist places a small protective sheet called a ‘dental dam’ over the area to isolate the tooth and keep it clean and free of saliva during the procedure. 

The endodontist makes an opening in the crown of the tooth. Very small instruments are used to clean the pulp from the pulp chamber and root canals and to shape the space for filling. 

After space is cleaned and shaped, the endodontist fills the root canals with a biocompatible material, usually a rubber-like material called gutta-percha. The gutta-percha is placed with an adhesive cement to ensure complete sealing of the root canals. In most cases, a temporary filling is placed to close the opening. The temporary filling will be removed by your dentist before the tooth is restored. 

After the final visit with your endodontist, you must return to your dentist to have a crown or other restoration placed on the tooth to protect and restore it to full function.” 

Photo by Evelina Zhu on Pexels.com

Got it? By the way, it really doesn’t hurt and there’s just a bit of an ache for the first day or so due to the pressure that had been exerted. At least, that’s the way it was for me. 

Now let’s see what we can find out about the kidney connection with a root canal. DaVita, a dialysis center which also educates about CKD, had just what I was looking for: 

 “Both tooth decay and gum disease can lead to infections that can cause problems for people with kidney disease and those who have diabetes…. 

Tooth decay and gum disease are caused by plaque. Plaque is a sticky film of bacteria that coats the teeth. The sugars and starches of the food you eat react with the plaque, causing it to release acids. These acids wear away the hard tooth enamel, eventually leading to cavities and tooth decay…. 

Gum disease starts when plaque accumulates and hardens over time. This hardened plaque is called tartar. Tartar settles at your gum line and can make your gums sensitive and irritated. If you notice your gums bleed after brushing your teeth, this is a symptom of gingivitis, an early stage of gum disease. Left untreated, tartar can build up to the point where the gums pull away from your teeth. This gap forms pockets that let in food and bacteria, which can cause infections. This stage of gum disease is called periodontitis…. 

A study in the Journal of Clinical Periodontology reported that people with kidney disease and those on dialysis are more likely to have periodontal disease and other oral health problems than the general population. Buildup of bacteria in the mouth can cause infection. Because people with kidney disease have weakened immune systems, they are more susceptible to infections…. 

Kidney patients are advised to tell their kidney doctor when a dental procedure is required. The doctor may recommend antibiotics be taken prior to the procedure to help guard against infection. [My endodontist prescribed them after my first treatment with him.] The dentist should be made aware that their patient has kidney disease or is on dialysis. [I told him before we started treatment that I have ckd.] Ideally, dental procedures, such as tooth extraction, should occur on a non-dialysis day for those on hemodialysis. Heparin, administered during hemodialysis, may cause some people to have extra bleeding.” 

I wanted to know how the pulp got infected in the first place. [That’s me: always asking “Why?”] I also wanted to be able to understand the answer. WebMD filled the bill: 

“A tooth’s pulp can become irritated, inflamed, and infected due to deep decay, repeated dental procedures on a tooth, large fillings, a crack or chip in the tooth, or trauma to the face.” 

Photo by Alex Green on Pexels.com

In my case, it was the large filling who knows how many years ago. So there I was with ckd, diabetes, and needing a root canal.  I knew my immune system wasn’t great and so did the endodontist; hence, the antibiotics. What I didn’t know was that dental problems could trigger other infections for those with ckd or diabetes. What I didn’t know was that this minor infection could become a major one because my immune system was weak due to the ckd and diabetes. 

Let me remind you why our immune systems are weak. I included this in SlowItDownCKD 2020: 

“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 ‘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’“  

It made more sense when I added this in the same blog, 

“According to the National Kidney Foundation, 

‘…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’.” 

There you have it – the connection between CKD, diabetes, and a root canal. 

Until next week, 

Keep living your life! 

Pleasant Dreams

I have Sleep Apnea and so do many of you. I used a mouth guard for years. Once that stopped working for me, I switched to a BiPap, but wasn’t too happy with it. Quick reminder: BiPap means Bilevel Positive Airway Pressure or your prescription air pressure breathing in and a lighter air pressure breathing out.

My hair was always flattened, and I was always tired. I needed something that wouldn’t leak and had no head straps, but what? Then I discovered DreamPort. Since Sleep Apnea can affect your Chronic Kidney Disease and your Diabetes, and even your high blood pressure, I knew I had to share this new information with you.

Stuart Heatherington, the Founder and Executive Chairman of Bleep, LLC jumped to when I asked him to write a guest blog about his product. While this is not an advertisement for DreamPort, I do recommend it for those with Sleep Apnea who are having problems with mask leakage and/or are just plain tired of flattened hair and lines on their faces.

“Sleep Apnea is when a person stops breathing as they sleep, and it can happen hundreds of times a night. The person’s airway closes from as little as a few seconds to longer than a minute in severe cases. In order to start breathing again, you are jarred awake to break the obstruction with loud snoring and gasping for breath. Sleep Apnea disrupts normal restful sleep waking the individual up from 10/hr. to as much 150/hr., leaving the sufferer tired and stressed, and, if untreated, at a much higher risk of heart attack, stroke, kidney ailments, hypertension, blood sugar spikes, car accidents, memory issues, etc.

I’m sure many of you know a family member or friend suffering from Sleep Apnea, if you do not suffer from Sleep Apnea yourself. Almost everyone knows someone that falls asleep at family get-togethers or the second they sit in a car as a passenger.

The gold standard for treatment is called CPAP or APAP therapy. With this therapy a PAP machine uses room air to keep the airway open and prevent it from collapsing and causing an obstructive apnea. PAP therapy has been around for decades and is proven to effectively treat obstructive Sleep Apnea. However, many patients struggle with PAP therapy and it is largely due to the comfort of the mask.

There are hundreds of FDA approved CPAP masks on the market, and they all have one thing in common – the mask is held in place with headgear and straps. The issue with headgear is that although it holds the mask in place, it does not prevent leaks. Leaks occur when the seal between the mask and face/nose is broken, and air leaks out. The fix for the leaky mask is to tighten the headgear and mask on your face. This fix then leads to many other issues that trouble CPAP users such as lines on the face that last for hours, skin irritation and breakdown on the nose and in the nose, matted and damaged hair. Those are just a few examples. So, you can see how many CPAP users struggle with the therapy, to the point that some give up. The Bleep DreamPort Sleep Solution is different in that we do not use headgear, and we do not leak.     

The DreamPort is adhered to the nose using hypoallergenic surgical foam tape [Gail here: I have not had any problems with the adhesive.] to create a night-long leak-free seal. It’s Latex-Free, BPA-Free, Corn-Free and Silicone-Free on the seal. Because the tape adheres directly to the nose, there is no leak, and because there is no leak and no headgear, there is nothing to tighten. All the issues I previously mentioned just go away.

DreamPorts are nightly disposable, so each night the individual gets a fresh new set of DreamPorts to apply. Since we are different from traditional CPAP masks, it is very important that the instructions are carefully read, or the instructional video is watched to ensure proper use. It is also important to clean your nose area prior to applying the DreamPorts with an astringent such as Witch Hazel or Alcohol, as soaps have oils and moisturizers in them that can impact the ability of the adhesive to stay on all night.

Because there is no leak and no headgear, the individual can sleep in any position. With a standard CPAP mask and traditional headgear, whenever the individual rolled over on their side, the pillow pressed up against the mask and caused a leak. This leak would wake up the individual. Because DreamPort seals so well, the pillow will not cause a leak and the individual can sleep in any position.     

I am a Sleep Apnea sufferer myself and have experienced all the issues most people have with Sleep Apnea. A number of years back, while traveling to a CEU conference, I woke up at 3AM with an epiphany. I jotted down the idea on a napkin and woke my wife up to talk about it until 5 a.m. That was a Saturday morning. We drove home Sunday after the show.

I went straight to Lowes and CVS and bought the items needed to put the proof-of-concept together. I took my old CPAP mask and reconfigured it using copper tubing from Lowes and corn patches bought at CVS and an older product called Provent that used a tape similar to our needs. Although the initial design was a bit crude, it worked all night at a pressure of 10 centimeters of pressure. On Monday morning I started the work of hiring a patent attorney and hired an engineer a couple days later to help with concept design. 

End result? You can find us on www.bleepsleep.com or visit our Facebook page at BleepSleep.”

I have no reservations about endorsing this product. How very nice to be able to sleep on my side again if I want to. How very nice to actually get a good night’s sleep again. Thank you for that, Stuart.  

What’s That Sound I Hear?

My husband suffers from tinnitus and often complains about how loud “the crickets” are. He tells me there’s nothing that can be done about this. But then, a reader asked about tinnitus, and I realized chronic kidney disease patients have a three time more likelihood of developing this malady. Now I can no longer accept that nothing can be done. 

Photo by Dane Sam on Pexels.com

Let’s start at the beginning. Just what is this? Oh goody, time to consult my favorite dictionary. That, of course, is The Merriam-Webster: 

“a sensation of noise (such as a ringing or roaring) that is typically caused by a bodily condition (such as a disturbance of the auditory nerve or wax in the ear) and usually is of the subjective form which can only be heard by the one affected” 

Wait a minute. That doesn’t say anything about chronic kidney disease. But a large study published by The National Center for Biotechnology Information [(NCBI] does:  

“This study presented that CKD is a significant and independent risk factor for tinnitus. The patients with CKD have a 3.02 times higher risk of developing tinnitus. Furthermore the patients with end stage renal disease and dialysis are at a 4.586 times risk of tinnitus than general population and carry a higher risk of tinnitus than the patients with CKD and without dialysis….”   

The NCBI is part of the United States National Library of Medicine [NLM], which is a branch of the National Institutes of Health [NIH].    

Everyday Health tells us what the causes of tinnitus may be: 

“Tinnitus is often associated with high blood pressure, allergies, and abnormal kidney function. Tinnitus can also occur because of: 

Tumors 

Cardiovascular problems 

Medication side effects 

Loss of hearing 

Being around very loud noises 

A head or neck injury 

Bones in the middle ear that become harder” 

 
Did you notice “high blood pressure” and “abnormal kidney function” in the explanation above? By the way, my husband had been around very loud noises the whole time he served in Vietnam.  

I found a highly readable explanation on the connection between the kidneys and ears at Hearing Unlimited. 

“If you asked a medical professional about the kidneys and the ears, they would tell you that ‘the kidneys share physiologic, ultrastructural and antigenic similarities with the stria vascularis of the cochlea.’ Or, in plain English: a specific part of our ears shares functional and structural characteristics with our kidneys. 

Photo by Hassan OUAJBIR on Pexels.com

It almost sounds unreal – how could the ears share similarities with the kidneys? But research has confirmed that physiological mechanisms of fluid and electrolyte balance are present in both organs. This matters because it means that when a health issue affects the functionality of one (i.e. the kidneys or the ears), it’s likely to affect the other ….” 

Now what? It’s there. You have CKD, but you don’t know if that’s the cause of your tinnitus. WebMD has some suggestions that may or may not work, but they seem worth a try… except for those you just can’t try because you have CKD. For example, I’d stay away from the herbals because they aren’t regulated. Do check any other medications with your nephrologist before you proceed. 

“Even if a specific cause is never found, there is still hope for successful treatment. A combination of therapies over time usually offer the best hope. 

Biofeedback, relaxation training, counseling, and individualized psychotherapy helps manage stress and helps you change your body’s reaction to the tinnitus. Tinnitus Retraining Therapy (TRT) combines counseling with special background sounds designed to help people suppress the sounds of their tinnitus. 

Antianxiety medications, such as Valium or Xanax, as well as a wide range of antidepressant medications, are very helpful for tinnitus sufferers. Other medications, such as diuretics (water pills), muscle relaxants, anticonvulsants medications, and antihistamines, are also used. 

Special hearing aids, electronic masking devices, or both, are often used when other methods have failed to achieve control. Cochlear implants and cochlear stimulation devices are being investigated for severe, intractable tinnitus cases. Surgical injections of lidocaine directly into the inner ear are also being used in some cases. 

Alternative treatments such as hypnosis, acupuncture, chiropractic adjustments, vitamin/mineral supplements, and herbal remedies may have some promise, but there is little, if any, meaningful research as to their effectiveness. Ginkgo biloba — which is being studied to determine its effectiveness for tinnitus — is said to improve blood flow and nerve function. Use ginkgo biloba with caution if you have a bleeding disorder or take blood thinners. Explore alternative options carefully, with the cooperation of your medical providers.” 

That got me to wondering if lifestyle changes could be of any help. Bingo! Hearing Associates of Las Vegas suggests you avoid the following: 

“Smoking 

Caffeine consumption 3 hours before bed 

Drink more water and less other liquids 

Any food triggers 

Listening to media at high settings” 

Photo by Andrea Piacquadio on Pexels.com

Avoiding smoking and drinking more water are two suggestions that would help your CKD even if you didn’t have tinnitus. 

I got curious about the special hearing aids since that’s something we hadn’t tried for my husband. In attempting to research that, I discovered something called a masker.  

“A tinnitus Masker is an electronic hearing aid device that generates and emits broad-band or narrow-band noise at low levels, designed to mask the presence of tinnitus. 
 
Such masking noise is also referred to as white noise. For an individual suffering from both hearing loss and tinnitus, the masker and the hearing aid can operate together as one instrument.” 

This information is from Hear-It. I thought you might think they were a selling site [as I did], so I’m including this information from their website: 

“Hear-it.org is a non-commercial web site and has been established to increase public awareness of hearing loss. Hear-it.org is one of the world’s leading and most comprehensive websites on hearing, hearing loss and tinnitus and how to treat and live with hearing loss or tinnitus.” 

Until next week, 

Keep living your life! 

A New Pregnancy and a New Diagnose

I have two grandsons. One is three and a half. The other is 21 months. How do I explain to them what my life is like if I go on dialysis? Or require a transplant? Sure, I’m a writer… but not for children. That’s a special kind of author. That’s why I asked Jessica Webb, a Christian children’s book writer, if she wouldn’t mind explaining how she came to write a kidney disease book for children. She was kind enough to guest blog to clue us in on her particular journey. Here’s what she wrote:   

I was always aware that I was different from other kids my age for as long as I can remember. But it wasn’t until I was pregnant that I found out something wasn’t right. A 24 hour urine test came back with a very high protein count. That was the beginning of a new chapter in my life. 

I was referred to one of the top nephrologists in Louisville, Kentucky when I was about four months pregnant. To my dismay, my pregnancy was now considered high risk. I was informed I had some sort of kidney disease, but a biopsy could not be performed until after I had the baby.   

We continued routine OB/GYN appointments, nephrology appointments, and high-risk OB/GYN appointments.  Around 35 weeks, my creatinine was close to 2.5. My doctor panicked and said the baby had to be born before there was more kidney damage. That started 48 hours of hell.  

I was pumped full of magnesium because I’d had a few bouts of high blood pressure. The medical staff assumed I had preeclampsia. Magnesium sulfate was protocol for preeclampsia. I felt paralyzed and everything was blurry. I started having very, very low blood pressure, was throwing up, and came close to passing out.  

The morning after my son’s birth, I awoke feeling sick. I still was nearly blind and could not move a muscle. I told my husband something was amiss, and they have to stop giving me this magnesium ASAP. 

My husband and I don’t like conflict. We try to trust doctors and nurses. We never had a reason not to. But I told my husband if something doesn’t happen, I’m going to die. “Get me the nurse now!” I yelled.  

For the first time in my life, I was aggressive towards the nurse because she wasn’t listening to me. I told her to stop the magnesium right away. She did. A few hours later, a nephrologist arrived who said, “Thank God, you told them to stop the magnesium because it was eight on the 1-10 magnesium scale. Nine is when most people go into cardiac arrest.”  

The nurses had also given me Advil and Motrin for pain and that made my creatinine skyrocket. I learned during that hospital stay how differently we have to treat our bodies as people with kidney disease. Our bodies do not react the same way as non-kidney patients’ bodies do.   

Once I was discharged from the hospital and then my son was a month later, I started my journey of finding out what my kidney disease was caused by. We did a biopsy. The nephrologist told me there had been no doubt in his mind I had FSGS. Then began the extensive researching, reading, and asking questions about this disease. I learned that even with a transplant, FSGS can come back in the new transplanted kidney. I was devastated. 

What really helped me get through those months was that I started to illustrate and write children’s books. I wrote two Christian based books over those months and sold a lot to friends and family.  

I knew what my third children’s book had to be. I wanted to write a book about kidney disease, dialysis, and transplant. I wanted it to be light-hearted and funny, so young children could understand the seriousness of the situation. If they had a family member on dialysis, I wanted to explain to them why this person didn’t always feel healthy enough to participate. Or, if they were the ones on dialysis or had to have a transplant, to give them ways to cope. I also wanted to show preventive ways to take care of your kidneys and give more information on the subject in general.  

When I looked around to see if there was anything like that when my son was little, I couldn’t find anything. He learned the hard way. But I would have given anything to have a book to help his little mind understand the gravity of the situation. My book, The Book About Kidneys: And No, Not the Beans, has been a hit with the dialysis community. I’m so glad to be offering this resource to the little ones in our lives.   

Three things I wish I’d known before this all happened: 

One – I wish someone had told me to take a breath and get a second or even third opinion.  

Two – YOU are the only true advocate for yourself and your health. Doctors only know what they’ve seen before or what they’ve studied. But this is a very complex disease, and all of our bodies are different. Don’t let anyone brush off a symptom they say is unrelated.  

Three – If you aren’t the one on dialysis but your loved one is, be patient with them. This disease is a nasty one. One day they may not feel too bad and the next may be their worst day. Love them and be kind. Don’t just ask them how you can help. Take it upon yourself to do so.  

I hope to release more books on the subject of kidney disease and major illness. You can find my books on Amazon. Thanks! Jess 

While the book does have a bit of a Christian bent, I found it well worthwhile for children. It’s fun and informative without being overwhelming to “little minds.” I’m a bit relieved that there is a book to explain to my grandsons should that be necessary. 

Until next week, 

Keep living your life! 

Uh, What’s That?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo by Lisa A on Pexels.com

“Side effects of Kerendia include: 

high blood potassium (hyperkalemia),  

low blood pressure (hypotension), and  

low blood sodium (hyponatremia).” 

This is important to know because, as WebMD explains: 

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

As for hypotension, The MayoClinic has that one covered: 

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

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!

 

The Other Side of the Coin

We are having an extreme heat warning here in Arizona. For us, that means we stay in the air conditioned house. For some reason, that makes me very eager to write. I’m working on a book about my dance with cancer, a sequel to Portal in Time (or maybe a prequel), and a murder mystery. But, of course, the blog comes first. This is my payback for everything good that’s ever happened to me. 

Last week, I wrote – without going too deeply into the topic – about obtaining a kidney. This week I’ll be writing about donating a kidney. I have it in mind to ask a friend who is a kidney donator about writing a guest blog, but we may have to wait a bit for that. She is one busy person. 

So, without this first-hand experience, let’s see what we can find out. According to the National Kidney Foundation, living donation can come from the following: 

“Living donation takes place when a living person donates an organ (or part of an organ) for transplantation to another person. The living donor can be a family member, such as a parent, child, brother or sister (living related donation). 

Living donation can also come from someone who is emotionally related to the recipient, such as a good friend, spouse or an in-law (living unrelated donation). Thanks to improved medications, a genetic link between the donor and recipient is no longer required to ensure a successful transplant. 

In some cases, living donation may even be from a stranger, which is called anonymous or non-directed donation.” 

But not everyone can donate a kidney. I turned to Dignity Health, the fifth largest health system in the nation, for more information about not being able to donate: 

“Living donors should be in good overall physical and mental health and older than 18 years of age. Some medical conditions could prevent you from being a living donor. Medical conditions that may prevent a living kidney donation may include uncontrolled high blood pressure, diabetes, cancer, HIV, hepatitis, acute infections, or a psychiatric condition requiring treatment. Since some donor health conditions could harm a transplant recipient, it is important that you share all information about your physical and mental health. 
 
You must be fully informed of the known risks involved with donating and complete a full medical and psychosocial evaluation. Your decision to donate should be completely voluntary and free of pressure or guilt.” 

So now that we have an idea of who can and who cannot donate a kidney, the original question remains. How do you donate? 

The most logical source I could think of for this information was The American Kidney Fund. Here’s what they had to say: 

“Contact the transplant center where a transplant candidate is registered. 

You will need to have an evaluation at the transplant center to make sure that you are a good match for the person you want to donate to and that you are healthy enough to donate. 

If you are a match, healthy, and willing to donate, you and the recipient can schedule the transplant at a time that works for both of you. 

If you are not a match for the intended recipient, but still want to donate your kidney so that the recipient you know can receive a kidney that is a match, paired kidney exchange may be an option for you. 

Another way to donate a kidney while you are alive is to give a kidney to someone you do not necessarily know. This is called living non-directed donation. If you are interested in donating a kidney to someone you do not know, the transplant center might ask you to donate a kidney when you are a match for someone who is waiting for a kidney in your area, or as part of kidney paired donation. You will never be forced to donate.” 

Let’s take a look at the actual procedure now. The most commonly used surgical procedure for kidney donation is laparoscopic. The University of California San Francsico explains it far better than I could: 

“Laparoscopic donor nephrectomy is minimally invasive surgery that utilizes instruments such as a camera (videoscope) and tools (instruments) to remove the kidney on long, narrow rods that are placed into the abdomen through small incisions. 

The videoscope and surgical instruments are maneuvered through three or four small incisions in the abdomen. Carbon dioxide is pumped into the abdominal cavity to inflate it, which helps the surgeon to see and maneuver better.  

Once the kidney is freed, it is secured in a bag and pulled through an incision that is about 3 inches long and is several inches below the umbilicus (belly button).  

Laparoscopic donor nephrectomy has several benefits over open nephrectomy, including faster recovery time, shorter hospital stay, and less post-operative pain.  The majority of transplant centers today perform laparoscopic donor nephrectomy for their living donors.” 

Finally, let’s find out what life would be like for you after donating your kidney. 

“You will need a few weeks to months to heal from surgery, but after that most donors are able to return to their normal daily life: 

You won’t need lifelong medicines 

You can eat the same things you did before donation 

You can be active and play sports 

You can still get pregnant or father a child 

Most living donors say they were happy with the donation experience and that they would do it again. It’s a chance to change someone’s life. In a few cases, related living donors have even reported an improved quality of life after donation. 

To stay healthy, you’ll need medical checkups yearly and need to stay at a healthy weight after donating.” 

Thank you to UNOS [United Network for Organ Sharing] for the above information. 

I think I just may have become a kidney donor myself if I didn’t have diabetes. In any case, I did find this fascinating. It’s one of those things I’ve always wondered about and promised myself that I would find out about some day. Someday has come and now we both know a bit about being a kidney donor. 

Until next week, 

Keep living your life!  

There is Help

You may have noticed that I ‘steal’ most of my Facebook transplant posts from Jim Myers, better known in the kidney community as Uncle Jim. As kidney disease advocates, we are a very sharing bunch. You may have figured this out yourself when you read all the guest blogs while I was dealing with pancreatic cancer. Jim’s guest blog was on March 23, 2020. Use the archives dropdown to the right of the blog if you’d like to re-read the guest blogs mentioned today. 

I used to write in the foreword to the SlowItDownCKD book series that I didn’t deal with transplant because I didn’t know much about it. I think it was really because the thought any major surgery scared me. After two of my own during the cancer dance, I’m not afraid to write about transplants. Again, you’ve probably figured that out yourself by the number of transplant blogs in the last few years. 

While I’ve explained what a transplant is , why it’s needed, what kinds of kidneys can be used [4/19/21’s blog], and how the operation is executed [4/26/21’s blog], I have not written anything yet about help in finding a kidney. That’s where today’s blog comes in. Now keep in mind that this is not the only way to obtain a kidney, but it is a big help. 

The Resources & Services Administration’s Data Warehouse, a part of the Department of Health and Human Services, offered some numbers for us. Last year in the U.S. alone, there were 92,036 patients [about the seating capacity of the Los Angeles Memorial Coliseum] waiting for a kidney transplant. Only 21,656 received one. I decided to include kidney/pancreas transplants, too. 1,579 patients needed this double transplant, but only 674 received it. I am not a numbers person, but even I found this astounding. Look at the disparity between those people needing a kidney transplant and those receiving one. 

The American Kidney Fund offered quite a bit of information about getting on the national organ waiting list: 

“The process of getting listed for a kidney transplant often begins when your doctor refers you for the transplant surgery. But, you do not have to be referred by a doctor. You are free to visit a transplant center to be evaluated if you are interested in transplant. 

You can only be ready for a kidney transplant after you have passed the required evaluation at a transplant center that looks at your physical health, mental health, and finances. If you pass this evaluation and the transplant team decides you are ready for transplant, you will be added to the national waiting list. 

The national organ waiting list is managed by an organization called the United Network for Organ Sharing (UNOS), a private, nonprofit agency that works with the federal government. UNOS keeps track of all the people in the United States who need kidney transplants, and matches them with donors. 

The national waiting list is not an ordered list that gives priority to the person who has been listed the longest. The UNOS waiting list uses complex ways to calculate where and when the best kidney match becomes ready for you. 

The United States is divided into 11 regions and 58 local Organ Procurement Organizations (OPO)s, which are areas used to find matches for transplant. For example, if a kidney becomes available, UNOS will first try to find a match in the OPO where the kidney is being donated. If no match is found there, UNOS will search within the larger region. If no match is found within the OPO or region, the kidney will then be available to someone who lives outside the region. 

When deciding who gets an available kidney, UNOS considers things about the donor and the person who is getting a kidney (the recipient): 

The age of the recipient 

Blood type of the donor and recipient 

The size of the donor kidney compared to the body of the recipient 

How urgent it is for the recipient to get a kidney 

How long the recipient has been waiting for a kidney 

The distance of the recipient from the donor kidney” 

 
There’s also something called a kidney exchange or swap. UCLA Health explains what this is: 

“What is a Kidney Swap? 

If a donor and recipient have a different blood type, they can exchange their kidneys with another donor and recipient pair in a similar situation. 

This can also be done among three pairs.” 

I turned to the Mayo Clinic to find out if there are people who would not be eligible for a kidney transplant: 

“But for certain people with kidney failure, a kidney transplant may be more risky than dialysis. Conditions that may prevent you from being eligible for a kidney transplant include: 

Advanced age 

Severe heart disease 

Active or recently treated cancer 

Dementia or poorly controlled mental illness 

Alcohol or drug abuse” 

Uh-oh, is 74 considered advanced age? Is a year and a half ago recently treated cancer? I am so glad I’ve been able to keep my GFR in the low 50s. 

There is another kind of kidney transplant. That is preemptive. As Uncle Jim [Hi again, Jim!] wrote on the National Kidney Foundation’s website: 

“A preemptive kidney transplant is a transplant that takes place for a kidney patient, before starting dialysis. It usually takes place before your kidney function deteriorates to the point where you need dialysis. In the U.S., only 2.5% of all kidney transplants are preemptive. Preemptive transplants are considered to be the preferred method of transplants when compared to post-dialysis transplants.” 

Kevin Fowles guest blogged about his preemptive kidney transplant in March 16, 2020’s blog. There’s much, much more information you’ll need to know about kidney transplants if you need one or even if you’re just interested. I think to cover all the information I’d have to blog about them for several weeks.

I wanted to give you a gentle introduction to the different kinds of kidney transplants there are and how to start obtaining one. There is a wait… a long wait. So be prepared. Speak with your nephrologist to start the process or for questions particular to your kidney disease. You can always ask me general questions about transplants, and I’ll try to answer them for you. Keep in mind that I’m not only NOT your doctor, I’m not a doctor at all. 

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! 

Never Heard of It Before

Before I get to what I’ve never heard of before, let’s pay homage to what I have heard of before. Therefore: Happy [yesterday] Father’s Day to all the fathers of all sexes and those acting as fathers. 

Photo by Cristian Dina on Pexels.com

While I’ve written about Juneteenth before, this is the first time I’m wishing you a glorious Juneteenth while it is a National Holiday. Good on you, Ms. Opal Lee! 

On to the kidney part of today’s blog. 

I’ve been a chronic kidney disease patient for 13 years and I have never, not even once, heard of Kremezin until another patient mentioned it. Not having a clue as to what it was, I turned to The National Center for Biotechnology Information (NCBI), a part of the United States National Library of Medicine (NLM), which is a branch of the National Institutes of Health (NIH). This is from a 2019 study published there: 

“AST-120 (KREMEZIN®) consists of oral, spherical carbon particles that adsorb uremic toxins and their precursors within the gastrointestinal tract, allowing them to be excreted in the feces. Uremic toxins such as indoxyl sulfate and p-cresyl sulfate are abundant in the blood of chronic kidney disease (CKD) patients and are related to the progression of both CKD and cardiovascular disease. AST-120 was approved in Japan in 1991 followed by Korea (2004), Taiwan (2007) and the Philippines (2010) for treating uremic symptoms and prolonging the time to initiation of dialysis in patients with progressive CKD.”   

As reported in BMC Nephrology last year:  

“OSCA effectively reduced serum IS levels in moderate to severe CKD patients. Gastrointestinal symptoms were the most commonly reported complications, but no treatment-related severe adverse effects were reported.” 

OSCA means oral spherical carbon adsorbent, a new kremezin type medication. According to their website: 

“BMC Nephrology is an open access journal publishing original peer-reviewed research articles in all aspects of the prevention, diagnosis and management of kidney and associated disorders, as well as related molecular genetics, pathophysiology, and epidemiology.”   

Hmmm, it sounded like a pretty easy solution to slowing down the progression to dialysis and/or transplantation, so why didn’t I know about it? And why didn’t you? 

Photo by Pixabay on Pexels.com

Then I thought that it might have disastrous side effects and that’s why it wasn’t widely used in the United State. A 2010 Korean study in The Korean Journal of Nephrology disabused me of that idea: 

“The most common adverse effects of AST-120 were gastrointestinal symptom, such as constipation, abdominal discomfort, nausea/vomiting.” 

While not pleasant, [Those remind me very much of the side effects of chemotherapy.] you can live with these if you want to delay dialysis and/or transplantation. 

I was having trouble finding more information about carbon based medical products, so I thought I’d try a more generalized approach. Bingo! This is from a 2018  Henry Ford Health System’s Henry Ford Live Well Blog: 

“…. Many people are looking for ways to reduce inflammation and detox, so there’s a huge market for these products. The problem is, there’s no agency overseeing the safety or effectiveness of activated charcoal, and it’s not governed by the Food and Drug Administration (FDA). [I bolded that; it’s so important.] 

Breaking Down the Facts on Activated Charcoal 

Before you slip some activated charcoal in your morning protein shake, it’s important to note that activated charcoal is not the same as the charcoal you buy at Home Depot for your backyard barbeque, nor is it made from the same stuff as the char on your overdone toast. Instead, it comes from burning specific types of wood — including bamboo, birch and balsam — at super-high temperatures, then oxidizing it. 

The particles left behind are almost pure carbon, so they’re able to suck up moisture and chemicals. But that doesn’t mean using it is safe or should be done without medical supervision. 

Here are … facts you should know before you purchase anything with activated charcoal: 

Photo by fotografierende on Pexels.com

It draws out impurities. Charcoal has a rich history as a medical treatment. Its porous texture binds to toxins and prevents your body from absorbing them. That’s one reason it’s a staple in hospital emergency rooms. Doctors commonly use it as an antidote for food poisoning and drug toxicity…. 

It can bind to medications, vitamins and minerals. Activated charcoal does bind to chemical toxins to flush them out, but it also binds to nutrients. Take too much and you could compromise your nutrient status or interfere with the way your body absorbs medication. It can make blood pressure medication and even birth control pills less effective. 

It can help patients with kidney disease. For patients with end-stage renal disease, activated charcoal may be a viable alternative to dialysis. The reason: It binds to urea and other toxins, reducing the number of waste products that filter through your kidneys. If you have kidney disease, talk to your doctor…. [Again, my bolding.] 

The Bottom Line 

Activated charcoal is still a largely unstudied and misunderstood compound and as far as safety goes, consumers are at the mercy of the manufacturer. Any chemical that has the potential to do good also has the potential to harm. Only use activated charcoal under the direction of a medical professional, particularly if you’re planning to ingest it.”  

This is now hour three on today’s blog and I still haven’t found any evidence that Kremezin is FDA-approved or sold in the United States. It is clear that it is used in other countries and can be ordered from those countries. But I wouldn’t suggest it. I found prices ranging from $340.00 to $440.99 for 336 500 mg. tablets. That’s quite a discrepancy. Additionally, the granular form is still being sold even though it has harsher side effects. 

If you’re interested, speak with your nephrologist. There may be good reasons that I wasn’t able to unearth you shouldn’t take this drug, effective or not. Then again, there may be good reasons to take it. Precision Medicine dictates that we are all unique patients, and we are. What works for you may not work for me and vice-versa. But wow! What if you were introducing your nephrologist to a new drug to help slow down the progression of the decline of your kidney function? I sort of doubt that would be the case, but it just might be. 

Until next week, 

Keep living your life! 

It Gets a Little Confusing

I’m familiar with hospice, as I’m sure quite a few of us are.  Way back in 1988, they came to my folks’ house for my father when he had pancreatic cancer. When my mother could no longer physically take care of him, he was moved to a hospice facility. Although I lived in New York and they lived in Florida, I spent quite a bit of time in hospice with my father. I was terrified and wholly unaware of what this was or what they were doing for us. Thank goodness they were there to help us. 

The Hospice Foundation of America tells us what hospice is: 

“Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life. 

An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family. 

Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life.” 

When I had pancreatic cancer two years ago, it wasn’t hospice that I heard discussed, but palliative care. One problem, I didn’t know what it was. Get Palliative Care explains: 

“Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family. 

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.” 

Let’s take a look at these two different concepts. What’s the difference between them? Hospice is for those “with a terminal illness,” while palliative care is for those “with a serious illness.” Well, isn’t a serious illness terminal? 

Photo by Karolina Grabowska on Pexels.com

No, it isn’t. Some of you knew that already, but some of you didn’t. Terminal means end, like a train terminal… or the end of life. According to Johns Hopkins Medicine – in the medical sense – serious means: 

“Vital signs may be unstable and not within normal limits. Patient is acutely ill. Indicators are questionable.” 

Serious is not necessarily critical. Remember that the next time you call a hospital to ask about the condition of a friend or family member. 

I knew palliative care grew from the hospice movement, but I didn’t know how or why. I turned to UPMC (University of Pittsburgh Medical Center) Palliative and Supportive Institute for the answer: 

“…. Palliate comes from pallium, the Latin word for ‘cloak’. [The English teacher in me just had to include that information.] To palliate is to cloak, or cover up, the symptoms of an illness without curing it. This meaning grew into the idea of alleviating or reducing suffering.  

Palliative care got its start as hospice care, often delivered by caregivers at religious institutions. Dame Cicely Saunders, a British physician, founded the first formal hospice in 1948 specifically to care for patients with terminal illnesses. Her success in improving her patients’ quality of life led her to introduce the concept of hospice care to other physicians, who quickly recognized the value in respecting people’s wishes and needs at the end of life. Caregivers began to understand that these values could apply to patients without terminal illnesses as well.

A New Way of Caregiving

In 1990, the World Health Organization (WHO) recognized palliative care as a distinct specialty dedicated to relieving suffering and improving quality of life for patients with life-limiting illnesses or serious injuries. WHO described the goals of palliative care as the prevention, assessment, and multidisciplinary treatment of physical, spiritual, and psychological problems. Palliative care was now an established entity, separate from hospice and sometimes administered along with curative treatments, but hospitals were rather slow to adopt the practice.  

The Growth of Palliative Care 

Palliative care eventually began to catch hold in hospitals across the United States. Between 2000 and 2011, the prevalence of palliative care in U.S. hospitals with 50 or more beds has increased more than 157% (according to the Center to Advance Palliative Care). Today, palliative care programs ensure whole-person healthcare for patients in approximately 75% of all hospitals with more than 300 beds. As more people begin to understand and appreciate the benefits that palliative care offers, the specialty has become available in nursing homes, ambulatory care centers, and home care programs.” 

Photo by Anna Shvets on Pexels.com

Inpatient palliative care is widely accepted in the U.S. now, but what if you want palliative care at home? What can be done for you without entering the hospital?  

“Medical evaluations, including monitoring for common symptoms like nausea, vomiting, pain, and anxiety 

Prescribing medications to ease these symptoms 

Additional medical applications like treating wounds and other medical needs 

Physical therapy and other rehabilitation needs 

Providing emotional and spiritual support in addition to physical 

Providing social interaction 

Providing guidance on navigating the healthcare system and understanding individual healthcare needs” 

Thank you to Crosswords Hospice and Palliative Care for the above information. 

This is starting to sound a lot like home health care. I wondered if the two were the same. The Alliance had a wonderfully simple clarification and even included hospice: 

• “Home health services help you get better from an illness or injury, regain your independence, and become as self-sufficient as possible. 
• Palliative care is a form of home health care in which patients face chronic or quality of life-limiting illnesses, and focuses on the relief of symptoms, pain and stress. Patients may receive curative treatments. 
• Hospice is for patients with a limited life expectancy, who are no longer receiving curative treatments for any terminal illness.” 

By the way, The Alliance is a pretty interesting group. This is how they describe themselves: 

“Employers are the second-largest purchaser of health care in the country, yet typically have little say in its price – which has gone up every year since 1996 – or its quality. However, by self-funding and banding together to leverage their purchasing power, employers can generate more control over their costs and demand better care for their dollar together.  

The Alliance serves as the voice of those self-funded employers who are tired of health care as usual; we’ve been creating clarity in health care for over 30 years by providing transparent, creative approaches to network and benefit plan design to unlock savings where others can’t – or won’t – using Smarter NetworksSM and sophisticated data mining and analysis.” 

What does any of this have to do with kidney disease? Palliative care is for kidney disease, too. 

Until next week, 

Keep living your life! 

A Point to Ponder

It’s clear to me that it’s past time for me – and you – to understand this. When I first was diagnosed with Chronic Kidney Disease back in 2008, it was my understanding that Blacks, or Afro-Americans as they were referred to back then, had a higher muscle mass and that’s why there was a different algorithm for their GFR. But as Dr. Vanessa Grubbs has questioned, “This equation assumes that Black people are a homogeneous group of people, and doesn’t take into account, how Black is Black enough?” 

Before I forget [truly a valid concern these days], this is her profile from University of California, San Francisco’s Profiles: 

“Dr. Vanessa Grubbs is an Associate Professor in the Division of Nephrology at UCSF and has maintained a clinical practice and research program at Zuckerberg San Francisco General Hospital since 2009. Her research focuses on palliative care for patients with end-stage kidney disease. She is among the 2017 cohort for the Cambia Health Foundation Sojourns Scholar Leadership Program, an initiative designed to identify, cultivate and advance the next generation of palliative care leaders; and the 2018 California Health Care Foundation’s Health Care Leadership Program. 
 
Her clinical and research work fuel her passion for creative writing. Her first book, HUNDREDS OF INTERLACED FINGERS: A Kidney Doctor’s Search for the Perfect Match, was released June 2017 from Harper Collins Publishers, Amistad division and is now in paperback….”   

She has a valid point. We have children in the family who have a white mother and a Black father. Are they Black? They don’t look Black to me. Are they white? They don’t look white to me. Heaven forbid they were ever diagnosed with Chronic Kidney Disease, which GFR should be used? The one for Afro-Americans? The one for non-African Americans? And who decides? Their mother? Their father? Their future nephrologist? 

What about the children in the family who have a Mexican father and a white mother? Are they considered Black? They don’t look Black to me. Are they white? They don’t look white to me. Heaven forbid they were ever diagnosed with Chronic Kidney Disease, which GFR should be used? The one for Afro-Americans? The one for non-African Americans? And who decides? Their mother? Their father? Their future nephrologist? I repeated the same questions as for the previous children so you can see that we could go on with the same questions for just about every mother/father combination you can think of.  

As late as last month, Missouri State University’s Office for Institutional Equity and Compliance offers the following definitions: 

“African American – Nonwhite person of African descent who lives in the United States. Not a synonym for Black. See Black. 

Afro-American – Outdated synonym for African American. Although not a derogatory term, avoid when possible. Use Black or African American if appropriate. See African American, Black ….. 

Black – Nonwhite person of Black descent, regardless of national origin. Use Black only in this larger context. Use terms as African American, Haitian, etc. when race is known. See African American, white …. 

White – Defined by the U.S. Census Bureau as a person of descent from the original people of Europe, the Middle East and North Africa….” 

As far as I know Mexico is not in Europe, the Middle East, North Africa, or Africa. So where does this leave these kids and all other Mexico or biracial kids [and adults] when deciding which algorithm to use in calculating their GFR? Wait a minute, where does this leave all non-white, non-Black people? 

But what about muscle mass; how do you determine it before finding a GFR? Or do you?  

I was getting a bit confused here, so I turned to the National Kidney Foundation for help: 

“African American patients: The CKD-EPI and MDRD Study equations include a term for the African American race to account for the fact that African Americans have a higher GFR than Caucasians (and other races included in the CKD-EPI datasets and MDRD Study) at the same level of serum creatinine. This is due to higher average muscle mass and creatinine generation rate in African Americans …. 

Male and female patients: The CKD-EPI and MDRD Study equations include a term for female sex to account for the fact that men have a higher GFR than women at the same level of serum creatinine. This is due to higher average muscle mass and creatinine generation rate in men…. 

Age: The CKD-EPI and MDRD Study equations include a term for age to account for the fact that younger people have a higher GFR than older people at the same level of serum creatinine. This is due to higher average muscle mass and creatinine generation rate in younger people …..” 

So, it’s not just Blacks’ GFRs that are calculated differently due to muscle mass. It’s also men of any race and younger people. I am not a doctor but then it doesn’t make any sense to me that there are two result categories: African American and non-African American. Why not Average Muscle Mass and Higher Muscle Mass? 

I neglected to explain what CKD-EPI and MDRD are: 

“In adults, the most widely-used equations for estimating glomerular filtration rate (GFR) from serum creatinine are the Chronic Kidney Disease Epidemiology Collaboration (CKD-EPI) equation … and the isotope dilution mass spectrometry (IDMS) traceable Modification of Diet in Renal Disease (MDRD) Study equation ….” 

Thank you to The National Institutes of Health’s National Institute of Diabetes, Digestive, and Kidney Diseases for that explanation. I’ve got to admit that all I got was that these two equations are used to estimate the GFR or Glomerular Filtration Rate. It’s the GFR that determines if you have CKD and, if you do, what stage you’re in.  

Somehow, I feel there’s more to this, especially since the National Kidney Foundation in conjunction with the American Society of Nephrology has created a task force exploring the possibilities for excluding race in the GFR algorithm. Stay tuned. 

Until next week, 

Keep living your life! 

A Question I Never Did Answer

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Salt and water, also important to kidney function. 

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

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

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

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

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

Uh-huh, the kidneys again. 

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

“High potassium blood levels. Symptoms can include: 

heart rhythm problems 

muscle weakness 

slow heart rate 

Allergic reactions. Symptoms can include: 

swelling of your face, lips, throat, or tongue 

Low blood pressure. Symptoms can include: 

feeling faint or dizzy 

Kidney disease. Symptoms can include: 

swelling in your feet, ankles, or hands 

Unexplained weight gain” 

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

I’ve Had Cancer, But Not This Kind

Several days ago, I received a call from a cousin who I haven’t seen nor heard from since my brother’s funeral almost three years ago. You know that can’t be good… and it wasn’t. It seems she might have kidney cancer. We are a cancer prone family, but this is the first possible diagnose of this kind. She wanted to know what I knew about it and I had nothing to tell her. But I will after this blog and you’ll know a lot more about it, too.  

Having no knowledge of this kind of cancer except that it starts in the kidneys, I decided my usual go-to the Mayo Clinic might be the best place for a general overview. 

“In adults, renal cell carcinoma is the most common type of kidney cancer. Other less common types of kidney cancer can occur. Young children are more likely to develop a kind of kidney cancer called Wilms’ tumor. 

The incidence of kidney cancer seems to be increasing. One reason for this may be the fact that imaging techniques such as computerized tomography (CT) scans are being used more often. These tests may lead to the accidental discovery of more kidney cancers. Kidney cancer is often discovered at an early stage, when the cancer is small and confined to the kidney.” 

Let’s not forget that the kidneys are buried deep in the body where a physical examination may not reach for signs of tumors. 

My cousin said she had no symptoms. Was that usual with this type of cancer? I know from my own experience that sometimes those with Chronic Kidney Disease have no symptoms, but this was cancer. The Cancer Treatment Centers of America laid out the possible symptoms for us: 

“The most common sign of kidney cancer is blood in the urine (hematuria), which may make the urine look rusty or dark red. Other signs of kidney cancer may include:  

Low back pain or pressure on one side that doesn’t go away 

A mass or lump on the side or lower back 

Fatigue 

Loss of appetite or unexplained weight loss 

A persistent fever not caused by infection 

Anemia (low red blood cell count) 

Swelling of the ankles and legs 

In men, a cluster of enlarged veins, called a varicocele, around a testicle, typically, the right testicle 

Although these symptoms may indicate a kidney tumor, they also may be caused by other, less serious health issues. Some kidney cancer patients experience none of these signs, and others experience different symptoms entirely.” 

I was curious as to how my cousin knew what her primary physician suspected since she’d told me she hadn’t had a biopsy yet. WebMD explained the other tests she may have undergone. 

“Urine tests check for blood in your urine or other signs of problems. 

Blood tests show how well your kidneys are working. 

Intravenous pyelogram (IVP) involves X-raying your kidneys after the doctor injects a dye that travels to your urinary tract, highlighting any tumors. 

Ultrasound uses sound waves to create a picture of your kidneys. It can help tell if a tumor is solid or fluid-filled. 

A CT scan uses X-rays and a computer to create a series of detailed pictures of your kidneys. This may also require an injection of dye. CT scans have virtually replaced pyelogram and ultrasound as a tool for diagnosing kidney cancer. 

Magnetic resonance imaging (MRI) uses strong magnets and radio waves to create detailed images of soft tissues in your body. You may need an injection of a contrast agent to create better pictures. 

Renal arteriogram. This test is used to evaluate the blood supply to the tumor. It is not given often but may help diagnose small tumors. It has other uses, as well.” 

While blood and urine tests can also confirm CKD and are familiar to us, renal arteriogram was something that was new to me. So, it sounds like she may go straight to CT since both the pyelogram and ultrasound are not as effective in diagnosing kidney cancer. 

Picture this. My cousin has been diagnosed and is going slightly berserk. Cancer is not an easy diagnosis. She goes to her primary doctor and (s)he refers her to one of these specialists who will bring in the rest of the team: 

“In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. For kidney cancer, the health care team usually includes these individuals: 

Urologist. A doctor who specializes in the genitourinary tract, which includes the kidneys, bladder, genitals, prostate, and testicles. 

Urologic oncologist. A urologist who specializes in treating cancers of the urinary tract. 

Medical oncologist. A doctor trained to treat cancer with systemic treatments using medications. 

Radiation oncologist. A doctor trained to treat cancer with radiation therapy. This doctor will be part of the team if radiation therapy is recommended. 

Cancer care teams include a variety of other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.” 

Cancer.net, which is doctor approved patient information from the American Society of Clinical Oncologists, was my source for this information. 

Wait a minute. “What’s the role of the nephrologist in all this? After all, that’s the kidney specialist,” my cousin may ask. According to UCLA Health’s Core-Kidney: 

“Nephrologists screen and identify kidney cancer patients that are at high risk of developing CKD after surgery. Nephrologists team with urologists for ‘before and after surgery’ care of patients. Nephrologists are routinely consulted for optimization of blood pressure of kidney cancer patients, correction of anemia, avoidance of drugs that are potentially toxic to kidneys and adequate hydration of kidneys during contrast use with computer tomography or during surgery.” 

I know, I know. What’s important to her right now is how this kidney cancer may be treated. I went straight to the horse’s mouth (so to speak) for help with this one. The National Kidney Foundation offers a multitude of options. To paraphrase, they are: 

Open, laparoscopic surgery, or robotic surgery to remove part or all of the kidney 

Thermal ablation 

Active Surveillance 

Chemotherapy and Radiation 

There are more options for advanced kidney cancer. 

For the first time in a decade, I don’t know how to end this blog. Let’s put it this way; I’ve had cancer, even though it wasn’t kidney cancer and I just plain hope cancer is not something you’ll have to deal with. 

Until next week, 

Keep living your life! 

How Is It Done?

A slightly belated welcome to the last week of National Donate Life Month to you. I have learned so much about kidney donation via my research for the blog this month, and hope you have, too. What makes more sense than to take a look at the donation process this week? 

Ready? I suppose the physical donation is the first part of the process so let’s look at that first. This is what Jefferson Heath, the home of Home of Sidney Kimmel Medical College, had to say about deceased donors: 

“It isn’t necessary to match the donor and recipient for age, sex or race. All donors are screened for hepatitis viruses and the HIV virus. What’s more, all deceased donor organs are tested extensively to help ensure that they don’t pose a health threat to the recipient. Also, many studies – such as ABO blood type and HLA matching – are performed to ensure that the organs are functioning properly. 

As soon as a deceased donor is declared brain-dead, the kidneys are removed and placed in sterile fluid similar to fluid in body cells. They are then stored in the refrigerator. The harvested kidneys need to be transplanted within 24 hours of recovery – which is why recipients are often called to the hospital in the middle of the night or at short notice.” 

I wondered if the process were different for a living donation. The Mayo Clinic tells us: 

“Both you and your living kidney donor will be evaluated to determine if the donor’s organ is a good match for you. In general, your blood and tissue types need to be compatible with the donor. 

However, even if your donor isn’t a match, in some cases a successful transplant may still be possible with additional medical treatment before and after transplant to desensitize your immune system and reduce the risk of rejection.” 

Now to the actual process. Johns Hopkins offered this very clear explanation of the process: 

“Generally, a kidney transplant follows this process: 

You will remove your clothing and put on a hospital gown. 

An intravenous (IV) line will be started in your arm or hand. More catheters may be put in your neck and wrist to monitor the status of your heart and blood pressure, and to take blood samples. Other sites for catheters include under the collarbone area and the groin blood vessels. 

If there is too much hair at the surgical site, it may be shaved off. 

A urinary catheter will be inserted into your bladder. 

• 

• 

You will be positioned on the operating table, lying on your back. 

Kidney transplant surgery will be done while you are asleep under general anesthesia. A tube will be inserted through your mouth into your lungs. The tube will be attached to a ventilator that will breathe for you during the procedure. 

The anesthesiologist will closely watch your heart rate, blood pressure, breathing, and blood oxygen level during the surgery. 

The skin over the surgical site will be cleansed with an antiseptic solution. 

The healthcare provider will make a long incision into the lower abdomen on one side. The healthcare provider will visually inspect the donor kidney before implanting it. 

The donor kidney will be placed into the belly. A left donor kidney will be implanted on your right side; a right donor kidney will be implanted on your left side. This allows the ureter to be accessed easily for connection to your bladder. 

The renal artery and vein of the donor kidney will be sewn to the external iliac artery and vein. 

After the artery and vein are attached, the blood flow through these vessels will be checked for bleeding at the suture lines. 

The donor ureter (the tube that drains urine from the kidney) will be connected to your bladder. 

The incision will be closed with stitches or surgical staples. 

A drain may be placed in the incision site to reduce swelling. 

A sterile bandage or dressing will be applied.” 

I wanted to know if there might be side effects or something else I should worry about as a kidney transplant recipient. The United Kingdom’s National Health Service was detailed in their response: 

“Short-term complications 

Infection 

Blood clots 

Narrowing of an artery 

Arterial stenosis can cause a rise in blood pressure.  

Blocked ureter 

Urine leakage 

Acute rejection 

Long-term complications 

Immunosuppressant side effects: 

an increased risk of infections 

an increased risk of diabetes 

high blood pressure 

weight gain 

abdominal pain 

diarrhoea 

extra hair growth or hair loss 

swollen gums 

bruising or bleeding more easily 

thinning of the bones 

acne 

mood swings 

an increased risk of certain types of cancer, particularly skin cancer” 

Not everyone experiences these complications, nor are they insurmountable as far as I can tell. 

But what about the donor? Could he experience any ill effects? According to the trusted and respected National Kidney Foundation: 

“You will also have a scar from the donor operation- the size and location of the scar will depend on the type of operation you have. 

Some donors have reported long-term problems with pain, nerve damage, hernia or intestinal obstruction. These risks seem to be rare, but there are currently no national statistics on the frequency of these problems. 

In addition, people with one kidney may be at a greater risk of: 

high blood pressure 

Proteinuria 

Reduced kidney function” 

Naturally, as a donor, you’ll also be concerned about the financial aspects of donating. UNOS has information about this: 

“Medical bills 

The transplant patients’ health insurance, Medicaid, or Medicare may cover these costs: 

Testing 

Surgery 

Hospital stay 

Follow-up care related to donation 

Personal bills 

Paid vacation and sick leave… 

Tax deductions and credits… 

Time off… 

Tax deductions or credits for travel costs and time away from work… 

Short-term disability insurance… 

FMLA (Family and Medical Leave Act) … 

NLDAC (National Living Donor Assistance Center) … 

AST (American Society of Transplantation) … 

Other 

Your private insurance or a charity may also cover costs you get during donation related to: 

Travel 

Housing 

Childcare” 

Not everyone is entitled to these financial aids. It depends on your employer, your length of time at that job, your state, and previous financial standing. 

• 

You’ve probably noticed how little Gail there is in today’s blog and how much research there is. Remember, I knew extraordinarily little about transplant before writing this month’s blogs. 

Until next week, 

Keep living your life! 

Giving It Away

Good-bye to National Kidney Month and a belated hello to National Donor Month. I don’t usually write about transplants and don’t know that much about them, so you and I will be learning together today. Restricting this blog to solely kidney transplants, there’s still quite a bit to write about. 

There are many reasons for needing a kidney transplant. The U.S. Department of Health & Human Services’s Health Resources & Services Administration’s Organ Procurement and Transplantation Network provides the following list of reasons: 

Kidney Diagnosis Categories	>Kidney Diagnoses
GLOMERULAR DISEASES	Anti-GBM; Chronic Glomerulonephritis: Unspecified; Chronic Glomerulosclerosis: Unspecified; Focal Glomerularsclerosis; Idio/Post-Inf Crescentic; Glomerulonephritis; IGA Nephropathy; Hemolytic Uremic Syndrome; Membranous Glomerulonephritis; Mesangio-Capillary 1 Glomerulonephritis; Mesangio-Capillary 2 Glomerulonephritis; Systemic Lupus Erythematosus; Alport’s Syndrome; Amyloidosis; Membranous Nephropathy; Goodpasture’s Syndrome; Henoch-Schoenlein Purpura; Sickle Cell Anemia; Wegeners Granulomatosis
DIABETES	Diabetes: Type I Insulin Dep/Juvenile Onset; Diabetes: Type II Insulin Dep/Adult Onset; Diabetes: Type I Non-insulin Dep/Juv Onset; Diabetes: Type II Non-insulin Dep/Adult Onset
POLYCYSTIC KIDNEYS	Polycystic Kidneys
HYPERTENSIVE NEPHROSCLEROSIS	Hypertensive Nephrosclerosis
RENOVASCULAR AND OTHER VASCULAR DISEASES	Chronic Nephrosclerosis: Unspecified; Malignant Hypertension; Polyarteritis; Progressive Systemic Sclerosis; Renal Artery Thrombosis; Scleroderma
CONGENITAL, RARE FAMILIAL, AND METABOLIC DISORDERS	Congenital Obstructive Uropathy; Cystinosis; Fabry’s Disease; Hypoplasia/Dysplasia/Dysgenesis/Agenesis; Medullary Cystic Disease; Nephrophthisis; Prune Belly Syndrome
TUBULAR AND INTERSTITIAL DISEASES	Acquired Obstructive Nephropathy; Analgesic Nephropathy; Antibiotic-induced Nephritis; Cancer Chemotherapy-Induced Nephritis; Chronic Pyelonephritis/Reflex; Nephropathy; Gout; Nephritis; Nephrolithiasis; Oxalate Nephropathy; Radiation Nephritis; Acute Tubular Necrosis; Cortical Necrosis; Cyclosporin Nephrotoxicity; Heroin Nephrotoxicity; Sarcoidosis; Urolithiasis
NEOPLASMS	Incidental Carcinoma; Lymphoma; Myeloma; Renal Cell Carcinoma; Wilms’ Tumor
RETRANSPLANT/GRAFT FAILURE	Retransplant/Graft Failure
OTHER	Other Rheumatoid Arthritis; Other Familial Nephropathy

Quite a few of these reasons should look familiar to you if you’ve been reading the blog regularly since I’ve written about them. You can use the topics dropdown to the right of the blog if you’d like to refresh your memory about specific reasons. 

Let’s take a look at some astounding numbers. Unfortunately, The National Kidney Foundation could only offer statistics from 2014. Very few sources separate donations specifically by organ, so we’re lucky to have even these older numbers.  

“There are currently 121,678 people waiting for lifesaving organ transplants in the U.S. Of these, 100,791 await kidney transplants. (as of 1/11/16) … 

The median wait time for an individual’s first kidney transplant is 3.6 years and can vary depending on health, compatibility and availability of organs … 

In 2014, 17,107 kidney transplants took place in the US. Of these, 11,570 came from deceased donors and 5,537 came from living donors… 

On average: 

Over 3,000 new patients are added to the kidney waiting list each month… 

13 people die each day while waiting for a life-saving kidney transplant… 

Every 14 minutes someone is added to the kidney transplant list… 

In 2014, 4,761 patients died while waiting for a kidney transplant. Another, 3,668 people became too sick to receive a kidney transplant… “ 

Fewer kidney transplants are being performed during the current pandemic. The American Kidney Fund explains why: 

“Because living-donor kidney transplants require two hospital beds and post-surgical recovery care in the hospital, we are hearing that a growing number of transplant centers are temporarily putting living-donor transplants on hold. This both preserves the availability of hospital beds for emergencies and COVID-19 patients, and also keeps non-infected people out of the hospital…. 

The coronavirus spreads easily from person to person, and can be spread by people who do not show symptoms of COVID-19. This puts anyone who has a compromised immune system—including transplant patients who take immunosuppressive drugs—at an increased risk of becoming infected. 
 
Even with social distancing, the virus is still spreading in communities. Newly transplanted patients would be especially vulnerable during their recovery period after transplant surgery. 
 
Another obstacle hospitals face is the need to test deceased donors for the coronavirus. Transplanting an organ from a coronavirus-positive patient could present a grave risk to the recipient. With limited test kits needed for living patients, and the lag time between testing and getting results, some hospitals may have to forgo testing—and procuring organs from—deceased donors…. 

Because COVID-19 is a serious respiratory illness, the most critical patients must be put on ventilators. Ventilators are normally used to keep an organ donor patient alive who is medically brain-dead so that their organs may be removed and transplanted. Those ventilators may be needed for COVID-19 patients instead….” 

Fewer transplants or not, I was curious about how it’s decided who is eligible for a kidney transplant. Nebraska Medicine had the answer in simple terms we can all understand: 

“In order to be eligible to receive a kidney transplant: 

You must have chronic irreversible kidney disease that has not responded to other medical or surgical treatments. You are either on dialysis or may require dialysis in the near future. 

You must qualify for and be able to tolerate major surgery. 

You and your family members/support system must be able to understand the risks and benefits of transplantation, including the long-term need for close medical follow-up and lifelong need for anti-rejection therapy. 

You and your family must be able to accept the responsibilities, including financial, that are part of the long-term care you will need after transplantation. 

Exclusion 

You may not be eligible to receive a kidney transplant due to: 

The presence of some other life-threatening disease or condition that would not improve with transplantation. This could include certain cancers, infections that cannot be treated or cured, or severe, uncorrectable heart disease. 

A history of chronic noncompliance including, but not limited to, medical treatments, medications or other behaviors that would affect your ability to fully care for yourself after transplantation. 

A history of chronic and ongoing drug and/or alcohol abuse that cannot be successfully treated before transplantation, putting you at risk for continued harmful behavior after transplantation. 

A history of serious psychiatric disorders that cannot be successfully treated before transplantation, and that would be considered a high risk for ongoing or increased severity of the psychiatric disorder after transplantation.” 

Note: Weight is included in your tolerability for major surgery. 

There’s so much more to write about re kidney transplant. Next week, we’ll talk about the process itself. 

Until next week, 

Keep living your life! 

National Kidney Month

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

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

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

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffering with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk. 

National Kidney Month is a time to increase awareness about the function of the kidneys and kidney disease. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease. One in three Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 26 million Americans who already have kidney disease, and most do not know it because there are often no symptoms until the disease has progressed.” 

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

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

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

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

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

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

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

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

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

1. Meet regularly with your health care team. Staying connected with your doctor, whether in-person or using telehealth via phone or computer, can help you maintain your kidney health. 

2. Manage blood pressure and monitor blood glucose levels. Work with your health care team to develop a plan to meet your blood pressure goals and check your blood glucose level regularly if you have diabetes. 

3. Take medicine as prescribed and avoid NSAIDs like ibuprofen and naproxen. Your pharmacist and doctor need to know about all the medicines you take. 

4. Aim for a healthy weight. Create a healthy meal plan and consider working with your doctor to develop a weight-loss plan that works for you. 

5. Reduce stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day. 

6. Make time for sleep. Aim for 7 to 8 hours of sleep per night. 

7. Quit smoking. If you smoke, take steps to quit. 

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

Learn more about managing kidney disease 

• Managing Chronic Kidney Disease 
• Eating Right for Chronic Kidney Disease 
• Nutrition for Advanced Chronic Kidney Disease in Adults 
• High Blood Pressure & Kidney Disease 
• Chronic Kidney Disease Tests & Diagnosis 
• Keeping Kidneys Safe – Know How Medicines Affect the Kidneys External link 
• Kidney Disease in Children” 

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

Until next week, 

Keep living your life! 

World Kidney Day, 2021

Will you look at that? The world keeps moving on, pandemic or not. And so, I recognize that Thursday of this week is World Kidney Day. In honor of this occasion, I’ve chosen to update whatever I’ve written about World Kidney Day before … now sit back and enjoy the read. 

…World Kidney Day? What’s that? I discovered this is a fairly new designation. It was only fifteen years ago that it was initiated. 

 According to http://worldkidneyday.org, 

“World Kidney Day is a global awareness campaign aimed at raising awareness of the importance of our kidneys.” 

Sound familiar? That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; SlowItDownCKD 2011; SlowItDownCKD 2012; 

SlowItDownCKD 2013; SlowItDownCKD 2014; SlowItDownCKD 2015;

 SlowItDownCKD 2016; SlowItDownCKD 2017; 

SlowItDownCKD 2018; SlowItDownCKD 2019, the soon to be published SlowItDownCKD 2020; Facebook; Instagram; LinkedIn; Pinterest; Twitter; and this blog. We may be running along different tracks, but we’re headed in the same direction. 

According to their website,  

“The International Society of Nephrology (ISN) is a global professional association dedicated to advancing kidney health worldwide since 1960 through education, grants, research, and advocacy.  

We do this for all our stakeholders by:  

BRIDGING THE GAPS of available care through advocacy and collaborations with our global partners  

BUILDING CAPACITY in healthcare professionals via granting programs, education and research  

CONNNECTING OUR COMMUNITY to develop a stronger understanding of the management of kidney disease.  

The ISN, through its members and in collaboration with national and regional societies, engages 30,000 health professionals from across the globe to reduce the burden of kidney diseases and provide optimal health care for patients.”  

If you go to Initiatives on the ISN’s website, you’ll find the following: 

“World Kidney Day (WKD) is a joint initiative between the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). 

World Kidney Day is a global campaign that aims to raise awareness of the importance of our kidneys to overall health and to reduce the frequency and impact of kidney disease and its associated health problems. 

World Kidney Day is an annual event that takes place worldwide. Hundreds of organizations and individuals launch initiatives and events on WKD to help raise awareness of kidney disease.” 

Now we just need to know what the International Federation of Kidney Foundations (IFKF) has to say about themselves: 

“Vision 

Better kidney health for all. 

Optimal care for people affected with Kidney Disease or Kidney Failure. 

Mission 

Leading a worldwide movement to 

Promote better kidney health with primary, secondary and tertiary preventive measures. 

Promote optimal treatment and care so as to maximize the health, quality of life, and longevity for people with or at high risk for developing Kidney Disease or Kidney Failure.” 

As of July of last year, the name has been changed to the International Federation of Kidney Foundations – World Kidney Alliance (IFKF-WKA) 

Photo by Karolina Grabowska on Pexels.com

Back to World Kidney Day’s website now, if you please. 

“The World Kidney Day Steering Committee has declared 2021 the year of ‘Living Well with Kidney Disease’. This has been done in order to both increase education and awareness about effective symptom management and patient empowerment, with the ultimate goal of encouraging life participation. Whilst effective measures to prevent kidney disease and its progression are important, patients with kidney disease – including those who depend on dialysis and transplantation – and their care-partners should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities.” 

Their site offers materials and ideas for events as well as a map of global events. Prepare to be awed at how wide spread World Kidney Day events are. 

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to a toolbox full of helpful education about your kidneys to preventative measures. 

Just as this year’s, the previous World Kidney Day themes were all educational and much needed by the CKD community. 

“2020 Kidney Health for Everyone Everywhere – from Prevention to Detection and Equitable Access to Care 

2019 Kidney Health for Everyone, Everywhere 

2018 Kidneys & Women’s Health. Include, Value, Empower 

2017 Kidney Disease & Obesity – Healthy Lifestyle for Healthy Kidneys 

2016 Kidney Disease & Children – Act Early to Prevent It! 

2015 Kidney Health for All 

2014 Chronic Kidney Disease (CKD) and aging 

2013 Kidneys for Life – Stop Kidney Attack! 

2012 Donate – Kidneys for Life – Receive 

2011 Protect your kidneys: Save your heart 

2010 Protect your kidneys: Control diabetes 

2009 Protect your kidneys: Keep your pressure down 

2008 Your amazing kidneys! 

2007 CKD: Common, harmful and treatable 

2006 Are your kidneys OK?” 

If only my nurse practitioner had been aware of National Kidney Month [That’s the topic of next week’s blog] or World Kidney Day, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier? That was thirteen years ago. This shouldn’t still be happening… but it is. 

Photo by Gabby K on Pexels.com

I received a phone call a few years ago that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately. 

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about. There had been no diagnose of Chronic Kidney Disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD. 

What a waste of the precious time he could have had to do more than stop smoking, which he did [to his credit], the moment he was told it would help with the diabetes.  Would he be where he was then if his medical practitioners had been aware of National Kidney Month or World Kidney Day, especially since this man was high risk due to his age and diabetes?  I fervently believe so. 

I have a close friend who was involved in the local senior center where she lives.  She said she didn’t know anyone else but me who had this disease.  Since 1 out of every 7 people does nationally (That’s 15% of the adult population) and being over 65 places you in a high risk group, I wonder how many of her friends were included in the 90% of those in the early stage of CKD who don’t know they have CKD or don’t even know they need to be tested.  I’d have rather been mistaken here, but I’m afraid I wasn’t. National Kidney Month or World Kidney Day could have helped them become aware. Thank you to the CDC for these figures. Please note the figures are as of 2019. 

For those of you who have forgotten [Easily understood explanations of what results of the different items on your tests mean are in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.], all it takes is a blood test and a urine test to detect CKD.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem. 

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog or hit ‘Apps’ on the Topics Dropdown .Responsum is a good place to start. None of us needs to hear another sorrowful, “If only I had known!” 

Until next week, 

Keep living your life! 

What’s That Sound I Hear?

Ever since I had the surgery that removed part of my pancreas, my gall bladder, and my spleen while saving my life, I’ve had a superabundance of flatulence and belching. Remaining delighted that I’m alive, I’m still, well, embarrassed by this. I called the surgeon to see if this were normal. He hadn’t prescribed any long-term medication, so I think he was a bit surprised at my question. His answer was no. 

Hmmm, maybe it was another medication since medication can be the source of both belching and flatulence. I called all my other doctors (and there were plenty). Nope, no one had prescribed a medication that would cause this. I’m fairly careful with my diet, so what could be the cause? 

Ah, there I am starting in the middle again. Let’s go back to what each of these terms is. 

Scotland’s National Health Service Inform explains what flatulence is: 

“Flatulence is passing gas from the digestive system out of the back passage. [Gail here: I love how delicately that’s phrased.] It’s more commonly known as ‘passing wind,’ or ‘farting’. 

Farting is often laughed about, but excessive flatulence can be embarrassing and make you feel uncomfortable around others. However, it can usually be controlled with changes to your diet and lifestyle. 

Flatulence is a normal biological process and is something everyone experiences regularly. Some people pass wind only a few times a day, others a lot more, but the average is said to be about 5 to 15 times a day.” 

While I like how easily I understood the definition, I wanted a little bit more and to find out about belching, too. Fortis Memorial Research Institute helped here and even threw in a bit about bloating – which seems to go along with belching and flatulence. It also explained what the pain you might experience with these three is: 

“Belching is a normal process and results from swallowed air accumulating in the stomach. The [sic] can be subsequently passed as rectal gas (flatus) also. 

Bloating is the subjective feeling that the abdomen is full but does not necessarily mean that the abdomen is enlarged. 

Flatulence refers to the passage of rectal gas. The gas is generally a combination of swallowed air and gas produced by the action of colon bacteria on undigested food. 

Gas accumulation can lead to pain which could seem like gallbladder pain or pain that can radiate up to the chest and seem like cardiac pain.” 

This was more informative, but I still wanted to find out more about this subject. (I guess I’m just never satisfied!). The MayoClinic provided me with that: 

“Flatulence: Gas buildup in the intestines 

Gas in the small intestine or colon is typically caused by the digestion or fermentation of undigested food by bacteria found in the bowel. Gas can also form when your digestive system doesn’t completely break down certain components in foods, such as gluten, found in most grains, or the sugar in dairy products and fruit. 

Other sources of intestinal gas may include: 

Food residue in your colon 

A change in the bacteria in the small intestine 

Poor absorption of carbohydrates, which can upset the balance of helpful bacteria in your digestive system 

Constipation, since the longer food waste remains in your colon, the more time it has to ferment 

A digestive disorder, such as lactose or fructose intolerance or celiac disease” 

There must be a way to cut down on belching and flatulence, I thought. Even if it’s normal, maybe it doesn’t have to happen so very often. So, I turned to my old buddy, Everyday Health to see if I could find some of the causative behaviors: 

“Eating high-fiber foods like beans, legumes, fruits, vegetables, and whole grains 

Drinking carbonated beverages 

Chewing gum 

Eating too quickly or talking while chewing, which results in swallowing more air 

Drinking through a straw 

Consuming artificial sweeteners 

Chronic intestinal diseases like diverticulitis or inflammatory bowel disease 

Food intolerances like celiac disease or lactose intolerance 

Bacterial overgrowth in the small bowel” 

That sounds easy enough. Yet, something was missing for me. I’d had cancer and still have chronic kidney disease. Is there some kind of connection? I found none with cancer, but Kidney Health Australia did make the connection between chronic kidney disease, and belching, bloating, and flatulence. 

“Reduced kidney function can lead to bowel problems such as constipation and diarrhoea. This can cause stomach discomfort including pain, bloating, gas and nausea. A renal dietitian or renal nurse may be able to suggest how to safely increase the fibre in your diet. Gentle exercise such as walking can also help relieve discomfort. Medications can also provide relief.” 

It’s the gas you produce that causes bloating (sometimes), belching, and flatulence. Remember that the Mayo Clinic cited constipation can contribute to these. Now we find that “reduced kidney function” can lead to constipation. 

That’s what ckd is: a progression in the decline of your kidney function for at least three months. 

Your flatulence, bloating, and/or belching may also be a complication of another problem. Check in with your medical team. You have to remember that I am not a doctor and have never claimed to be one.  

Healthline suggests the following conditions may be the cause: 

“If your diet doesn’t contain a large amount of carbohydrates or sugars, and you don’t swallow excessive air, your excessive flatulence may be due to a medical condition. 

Potential conditions underlying flatulence range from temporary conditions to digestive problems. Some of these conditions include: 

constipation 

gastroenteritis 

food intolerances, such as lactose intolerance 

irritable bowel syndrome (IBS) 

Crohn’s disease 

celiac disease 

diabetes 

eating disorders 

ulcerative colitis 

dumping syndrome 

gastroesophageal reflux disease (GERD) 

autoimmune pancreatitis 

peptic ulcers” 

Uh-oh, did you notice “diabetes” in the list above? That’s the second most prevalent cause of CKD and vice-versa. 

Hopefully, today’s blog has told you everything you always wanted to know about ckd & flatulence, belching, and bloating, but were afraid to ask (with apologies to Woody Allen). 

Until next week, 

Keep living your life! 

Your Kidneys and Covid – or – Covid and Your Kidneys

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

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

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

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

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

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

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

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

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

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

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

Your kidneys also make hormones that help 

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

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

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

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

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

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

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

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

Limit your interactions with other people as much as possible. 

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

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

The CDC further explains: 

“Three Important Ways to Slow the Spread 

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

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

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

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

Until next week,

Keep living your life!

It’s Not Just Scaly Patches

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

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

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

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

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

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

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

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

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

Plaques of scales or crust on the scalp.” 

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

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

“Causes 

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

Symptoms: 

Skin: 

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

Joints/Spine: 

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

Nails: 

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

Enthesis (plural, entheses): 

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life!  

One Thing is Not Like the Other

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• Lipases 
• Amylase 
• Lactase 

These terms may look familiar from your quarterly blood tests. 

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

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

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

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

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

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

Well, they have an announcement for you: 

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

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

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

COVID-19 Kidney Care Challenge Round 1 Winners 

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

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

Did you know that patients were involved in these projects? 

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

Until next week, 

Keep living your life!