Born with Kidney Disease 

We’ve had guest blogs from people who donated a kidney, received a preemptive kidney, received a non-preemptive kidney, are on dialysis, and those who advocate for kidney disease awareness. I don’t believe we’ve had a guest blog from someone who was born with kidney disease. That’s where Cody Kubiak comes in. 

Photo by Daniel Reche on Pexels.com

He has his own blog, Kidneys Quit, We Don’t. More to the point for us today, Cody was born with kidney disease at a time when kidney transplants were performed on very young children. Well, I’ll let him tell his own story: 

“Hey there, my name is Cody Kubiak and I have quite the unique kidney transplant story. For starters, unlike many who are diagnosed as they grow older and start having experiences with kidney disease or kidney problems, I was born with kidney failure right from the start. I was born with a rare development-al anomaly known as Posterior Urethral Valves or PUV for short. It’s essentially a blockage in your ureters that will kill your kidneys if the blockage isn’t fixed. It affects about 1 in every 8,000 male births worldwide. To this day the exact cause isn’t known. Nowadays this is fixable in utero but in 1989 that wasn’t the case. So, I was born with destroyed kidneys and high blood pressure. I would go on to have ostomies put in and had a couple different bladder surgeries.  

My parents even learned how to tube feed me once I eventually left the NICU. To this day I’m still blown away by their ability to handle all they did. The doctors told my parents we’d need to perform a kidney transplant on me as soon as I was big enough to undergo the procedure. My mother was a match and without any hesitation my mother said let’s do it. I had my kidney transplant when I was just 13 months old in April of 1990 thanks to my mom. Nowadays most hospitals won’t perform a transplant on anyone that is extremely young like I was. You typically have to wait until you reach a certain weight or age now before transplantation. There’s still a lot of debate on the subject on just how young is too young for a transplant.  

My childhood was relatively normal. I had good lab numbers mostly and besides the occasional biopsy anytime my creatinine went up I lived what I consider to be a normal life. I thank my parents largely for that because they always found a great balance for me between living a life and being safe. I couldn’t play contact sports and had to take meds twice a day everyday but eh, it wasn’t bad. I had a great childhood and even into my teen years I went to public school with no problems. I went on to graduate from high school in 2007 and went to community college here in Austin, Texas.   

2014 had just started and I had routine labs like always. My creatinine was high which wasn’t new to me but meant I needed to undergo a biopsy to see how everything was going. I didn’t have any concerns really because my creatinine had fluctuated before and I felt fine.  But it was that day I learned that just because you don’t feel sick doesn’t mean a part of your body isn’t. I learned my original kidney trans-plant that I had gotten from my mom was rejecting.  

I had heard that term my whole life, but it never clicked with me that it could happen at any time and at any age. Being born into this world put me in a unique position, because I had grown up with this. It’s all I knew. I had grown up adapting to it all, but the fear wasn’t there because I didn’t have the awareness most have because it all happened when I was born. Now after keeping that kidney healthy and safe for 25 years it had enough and I started going through CKD, but this time as a fully aware young adult. I slowly got more and more sick with each month that went by.  

By early 2015 my kidney function had fallen low enough to start getting people tested. A good friend of mine started a Facebook group Cody’s Warriors to help me find a donor. I had several people, friends and family stand up and get tested but they all had some small anomaly that kept them from donating. Fall of 2015 hit and I needed to start dialysis. Just as I was losing hope of finding a donor my aunt, not by blood but through marriage got tested and was a match. On September 16th, 2015, I had my second kidney transplant, and everything went great!   

It was after that transplant I wanted to start seeking out others like me and start a blog in hopes of helping others. I felt great and figured everything was behind me, but it wasn’t. I started getting sick after the transplant and after months of tests I discovered I had PTLD. [That’s Post-transplant lymphoproliferative disease.] Basically, my newly transplanted kidney had the EB virus [Gail here: Epstein-Barr virus infection] my body was never exposed to before. This resulted in Lymphoma cancer. I underwent chemo for about 3 months, and I was in remission. After overcoming all that in 2016, I found out in 2017 I had necrosis in my hip from taking prednisone my whole life. So, I had a complete hip replacement and again overcame and recovered. Then I’d run into the same issue with my left foot and had a bone graft and reconstructive surgery on that in 2019.  

Eventually things got better and so far, things have been great. I used to have so much depression over my situation until I started helping people. I found that experience to be infinitely rewarding and my goal today is to just be there for every kidney patient going through even a fraction of this and to see me and understand and know they aren’t ever alone no matter what your age is or how you got thrown into this world. If I can do it, so can you.”    

I see we aspire to the same goal. I’ve always maintained that those of us in the kidney disease awareness world are a sharing bunch. Thanks for demonstrating that.

Until next week,

Keep living your life!                                                                                                                    

We interrupt…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The FDA explains: 

Photo by Towfiqu barbhuiya on Pexels.com

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

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

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

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

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

Until next week, 

Keep living your life! 

What Are the Basics, Anyway? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The balance of fluids in your body 

The way nerves and muscles work 

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Feeling Bookish 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

 Only Two Weeks Left 

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

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

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

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

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

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

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

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

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

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

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

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

“MISSION STATEMENT 

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

VISION STATEMENT 

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

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

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

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

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

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

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

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

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

Why join a CKD support group 

Joining a support group will allow you to: 

Safely share your emotions 

Hear firsthand experiences of living with the disease and its treatments 

Trade coping mechanisms 

Receive encouragement 

Feel connected, understood, and empowered” 

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

Newsfeed 

New For Me 

My Notebook 

My Topics 

Dictionary 

Suggest An Article  

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

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

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

Until next week, 

Keep living your life! 

This One’s a Doozy 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Diabetes can harm the kidneys by causing damage to: 

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

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

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

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

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

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

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

Until next week, 

Keep living your life!   

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.   

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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! 

That’s Not Pair Of, But Para 

Thanks for waiting, Beth. This one’s for you. Beth asked if I’d covered hyperparathyroidism and chronic kidney disease. Lo and behold, I hadn’t. Haven’t a clue how I missed that one. Let’s rectify that right now. 

The Merriam-Webster Dictionary, still my favorite after all these years, defines the parathyroid as:  

“any of usually four small endocrine glands that are adjacent to or embedded in the thyroid gland and

produce parathyroid hormone” 

Wonderful, a definition that leaves us with other words that need to be defined. Using the same dictionary, we have the following meanings: 

“Endocrine: secreting internally, specifically: producing secretions that are distributed in the body by way of the bloodstream 

Hormone: a product of living cells that circulates in body fluids (such as blood) or sap and produces a specific often stimulatory effect on the activity of cells usually remote from its point of origin 

Parathyroid hormone: a hormone of the parathyroid gland that regulates the metabolism of calcium and phosphorus in the body   

Thyroid: a gland at the base of the neck that produces hormones which affect growth, development, and the rate at which the body uses energy” 

Now it makes sense. But wait a minute. Beth asked about hyperparathyroidism. No problem. We know hyper means overactive, so we’ll be dealing with an overactive parathyroid gland. 

Now let’s see what symptoms there are. The Mayo Clinic has that covered: 

“Hyperparathyroidism is often diagnosed before signs or symptoms of the disorder are apparent. When symptoms do occur, they’re the result of damage or dysfunction in other organs or tissues due to high calcium levels in the blood and urine or too little calcium in bones. 

Symptoms may be so mild and nonspecific that they don’t seem related to parathyroid function, or they may be severe. The range of signs and symptoms include: 

Osteoporosis 

Kidney stones 

Excessive urination 

Abdominal pain 

Tiring easily or weakness 

Depression or forgetfulness 

Bone and joint pain 

Frequent complaints of illness with no apparent cause 

Nausea, vomiting or loss of appetite” 

Calcium? Now we’re getting to the part ckd plays in hyperparathyroidism. Reminder: ckd is a decrease in the function of your kidneys for at least three months.  

I went to Kidney Health Australia for more information about calcium and the kidneys: 

“If you have kidney disease your body is not able to keep the levels of calcium and phosphate at healthy levels. When your kidneys start to fail they cannot remove the excess phosphate from your body. Kidney disease also leads to an increase in production of parathyroid hormone. This also leads to too much phosphate in your body. The phosphate builds up in your body and binds to calcium. This causes your calcium levels to decrease, which may weaken your bones. The phosphate and calcium can narrow your blood vessels and increase your risk of heart disease and stroke. It can also cause skin ulcers and lumps in your joints.” 

So, we see that it’s not only calcium involved in hyperparathyroidism but also phosphate. Think of it like the scales of justice. Calcium goes down and phosphate goes up. Conversely, phosphate goes down and calcium goes up. 

The National Kidney Foundation explains: 

“Normal working kidneys can remove extra phosphorus in your blood. When you have chronic kidney disease (CKD), your kidneys cannot remove phosphorus very well. High phosphorus levels can cause damage to your body. Extra phosphorus causes body changes that pull calcium out of your bones, making them weak.” 

Phosphate and phosphorous are used interchangeably in discussing kidney function, although they’re not exactly the same thing. 

There may also be confusion in another area as noted by Medline Plus

“Though their names are similar, the thyroid and parathyroid glands are completely different. The parathyroid glands make parathyroid hormone (PTH), which helps your body keep the right balance of calcium and phosphorous.” 

You should also know there are three kinds of hyperparathyroidism. The first – primary – is not kidney related so we’ll skip that and let Healthline demystify the other two: 

“Secondary Hyperparathyroidism 

Treatment involves bringing your PTH level back to normal by treating the underlying cause. Methods of treatment include taking prescription vitamin D for severe deficiencies and calcium and vitamin D for chronic kidney failure. You might also need medication and dialysis if you have chronic kidney failure.

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What Are the Complications Associated with Hyperparathyroidism? 

If you suffer from hyperparathyroidism, you might also have a condition called osteoporosis which is also sometimes referred to as “thinning” of the bone. Common symptoms include bone fractures and height loss due to vertebral body (spinal column) fractures. This can develop when excess PTH production causes too much calcium loss in your bones, making them weak. Osteoporosis typically occurs when you have too much calcium in your blood and not enough calcium in your bones for a prolonged period. 

Osteoporosis puts you at a higher risk for bone fractures. Your primary care provider can check for signs of osteoporosis by taking bone X-rays or doing a bone mineral density test. This test measures calcium and bone mineral levels using special X-ray devices…. 

Tertiary Hyperparathyroidism 

This type occurs when your parathyroid glands keep making too much PTH after your calcium levels return to normal. This type usually occurs in people with kidney problems. 

This is looking serious. How do you know if you have hyperparathyroidism? I’ll let WebMD handle this one: 

“Your doctor will ask about your medical history and look for symptoms including a swollen thyroid, a fast pulse, moist skin, and shaking in your hands or fingers. They’ll give you tests that might include: 

Thyroid panel. This blood test measures levels of thyroid hormones and thyroid-stimulating hormone (TSH). 

Thyroid scan. A technician injects a small amount of radioactive iodine into your bloodstream. Your thyroid absorbs it, and a special camera takes pictures of the gland to look for nodules or other signs of problems. 

Ultrasound. A technician runs a device called a transducer over your neck. It uses sound waves to create images of your thyroid. 

Radioactive iodine uptake test. You swallow a small amount of radioactive iodine. A device called a gamma probe measures how much of the iodine collects in your thyroid. If this uptake is high, you probably have Graves’ disease or thyroid nodules.” 

Consider these as Chanukah gifts

For treatment – as mentioned – there’s drugs, radioactive iodine, surgery, and more. Treatment is individualized, so that will be between you and your doctor. Aren’t you glad Beth asked for this blog? 

Until next week, 

Keep living your life! 

Prednisone, Too? 

Last week, we explored whether or not chronic kidney disease can cause diabetes. I remembered while writing that blog a reader told me prednisone caused her diabetes. [Take that brain fog!]  Really? Well, let’s take a look at that. 

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Let’s start at the beginning, lest I go trotting off to conclusions first. A definition of prednisone should be a good beginning. This is WebMD’s definition of the drug: 

“Prednisone is a corticosteroid. It prevents the release of substances in the body that cause inflammation. It also suppresses the immune system.” 

Uh, okay, but what’s a corticosteroid? Luckily for us, years ago I stumbled upon a study site called Quizlet. Their information is easily understood, so I rely on them a great deal. This is how they explain what a corticosteroid is: 

“any of a group of steroid hormones produced in the adrenal cortex or made synthetically. There are two kinds: glucocorticoids and mineralocorticoids. They have various metabolic functions and some are used to treat inflammation.” 

Maybe we should take a look at the two kinds to see which prednisone is. Several years ago, Healthline conferred an award on this blog two years running. I like their reader friendly information as much as they like the blog. Naturally, I turned to them for help on this.   

“Glucocorticoid drugs are man-made versions of glucocorticoids, steroids that occur naturally in your body. They have many functions. One is to interrupt inflammation by moving into cells and suppressing the proteins that go on to promote inflammation. They also help your body respond to stress and regulate how your body uses fat and sugar. 

Because glucocorticoids have so many functions, man-made or synthetic glucocorticoids have been developed to help treat many different conditions.” 

Okay, got it. How about mineralocorticoids? I was missing my favorite dictionary [Weird, isn’t it?], The Merriam-Webster, so that’s where I looked. 

“a corticosteroid (such as aldosterone) that affects chiefly the electrolyte and fluid balance in the body” 

Wait a minute. Both deal with the kidney’s function. We know ckd may cause inflammation and we know the kidneys control the electrolyte and fluid balance in the body. So, which one is prednisone? After hopping from medical site to medical site I conceded they all said the same thing: prednisone is classified as a glucocorticoid. I was surprised, but we have to remember that I’m not a doctor and never claimed to be one. They went to medical school; I didn’t. 

Our always reliable National Kidney Foundation spelled out the uses of prednisone in kidney disease: 

“Steroid drugs, such as prednisone, work by lowering the activity of the immune system. The immune system is your body’s defense system. Steroids work by slowing your body’s response to disease or injury. Prednisone can help lower certain immune-related symptoms, including inflammation and swelling…. 

Prednisone can also help avoid organ rejection after a kidney transplant, because of its ability to lower your immune system’s response to the new kidney. The body recognizes a transplanted organ as a foreign mass. This triggers a response by the body’s immune system to attack it. 

Prednisone can also be used to manage other kidney disorders, including: 

Focal glomerulosclerosis (FSGS) 

Minimal change disease (MCD) 

IGA nephropathy 

These conditions can lead to nephrotic syndrome. As a result, large amounts of protein leaks into the urine. This in turn reduces the amount of protein in your blood, known as proteinuria. Prednisone is used to help lower proteinuria in these disorders.” 

While this is interesting, it still doesn’t elucidate whether or not prednisone can cause diabetes. I decided to cross the pond [as they say] for a more definitive response from Diabetes.co.UK: 

“Corticosteroids are used to reduce harmful inflammation but can lead to diabetes – often referred to as steroid diabetes. 

People on steroids who are already at a higher risk of type 2 diabetes or those who need to take steroids for longer periods of time are the most susceptible to developing steroid induced diabetes…. 

To achieve their purpose, corticosteroids mimic the action of cortisol, a hormone produced by the kidneys and responsible for brining [sic] on our body’s classic stress response of higher blood pressure and increased blood glucose levels. 

Corticosteroids increase insulin resistance thus allowing blood glucose levels to rise and remain higher.” 

Wow, just wow. Not only can prednisone bring on diabetes, but this has a name: steroid diabetes. I wanted to know more, so I stayed in England and went to Northumbria Healthcare, part of the NHS Foundation Trust: 

“Why does it happen?  

Blood glucose levels are normally controlled by a substance called insulin which is naturally produced by a gland called your pancreas. Steroids can cause your body to become more resistant to the insulin produced causing blood glucose levels to rise. 

The facts  

The rise in blood glucose levels will usually happen between one or two days after starting steroids, and you will probably find that this will happen more commonly in the afternoon and evening. Your blood glucose will return to previous levels one or two days after stopping your steroids. With steroid induced diabetes some people will continue to have high blood glucose levels after the steroid course is finished. This is because the blood glucose levels were raised before taking steroids but they were unaware of it.” 

It is comforting to know this need not be a permanent condition. Yet, I was concerned. Diabetes is one of the two most common causes of ckd. Did this mean that those with a transplant could develop ckd again? I certainly hope I’m wrong, but that sounds like a blog for another day.

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Quick! Let me sneak in a wish for a Happy Thanksgiving for you and yours in whatever form you celebrate. I’m a member of a Facebook group called ‘Morning Gratitude,’ so this is an entire day of what I think about each morning. I wish you all the best health you can have. 

Until next week, 

Keep living your life!  

Does It or Doesn’t It? 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Sweet Dreams Are Made of This 

Today’s title probably made you think of the British group, Eurythmics (Annie Lenox & Dave Stewart). True, they did release an album by that name in 1983 with the lead song having the same name, but that’s not what I had in mind. I was thinking more of blood glucose, or blood sugar as it’s sometimes called. That’s the ‘sweet’ part of the title. ‘Dreams’ refers to the night. 

This week, I discovered that your blood glucose may rise in the early morning hours. That explains why mine was always so high when I woke. I could stop scratching my head about that, but it also got me to thinking my usual question: why?  

This phenomenon even has its own name: the dawn effect. WebMD explains: 

“It’s tied to whether the hormone insulin, which removes glucose from the blood, is working the way it’s supposed to. Blood sugar levels surge while you’re sleeping, usually around 4 to 8 a.m. for someone with a normal sleep schedule…. In a healthy person, insulin can handle the surge by telling muscle, fat, and liver cells to absorb the glucose from the blood, which keeps your levels stable. 

For people who have diabetes or who are likely to get it, insulin can’t do that job very well, so blood sugar levels will rise higher.” 

I wasn’t quite satisfied with the answer, so I turned to my old buddy, The Cleveland Clinic for more: 

“Your body uses glucose (sugar) for energy and it is important to have enough extra energy to be able to wake up in the morning. So for a period of time in the early morning hours, usually between 3 a.m. and 8 a.m., your body starts churning out stored glucose to prepare for the upcoming day. 

At the same time, your body releases hormones that reduce your sensitivity to insulin. In addition, these events may be happening while your diabetes medication doses taken the day before are wearing off.” 

I found myself intrigued by this explanation but still wasn’t satisfied so I figured the American Diabetes Association would probably have something more detailed but still understandable. They did: 

“In the early hours of the morning, hormones, including cortisol and growth hormone, signal the liver to boost the production of glucose, which provides energy that helps you wake up. This triggers beta cells in the pancreas to release insulin in order to keep blood glucose levels in check. But if you have diabetes, you may not make enough insulin or may be too insulin resistant to counter the increase in blood sugar. As a result, your levels may be elevated when you wake up. The dawn phenomenon does not discriminate between types of diabetes. Approximately half of those with either type 1 or type 2 experience it.” 

Now, we’re talking. When I had pancreatic cancer, two thirds of my pancreas had to be removed. How much insulin can the remaining one third of a pancreas produce? I thought I was satisfied with what I’d read. 

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Well, I was until I discovered the rare and controversial Somogyi effect in my researching. That threw a monkey wrench into my thinking. Healthline cleared my confusion: 

“According to the theory of the Somogyi effect, when insulin lowers your blood sugar too much, it can trigger a release of hormones that send your blood sugar levels into a rebound high. It’s thought to be more common in people with type 1 diabetes than type 2 diabetes.” 

Take a look at the list of symptoms provided by MedicalNewsToday. Luckily for me, I don’t have any of them. 

“Symptoms of the Somogyi effect start with high blood glucose levels upon waking that do not respond to increased insulin doses. 

The symptoms also include low blood glucose levels at 2:00 a.m. or 3:00 a.m. as well as the following, which are symptoms of low blood sugar: 

night sweats 

a rapid heart rate 

waking up with a headache 

blurred vision 

confusion 

dizziness 

dry mouth 

fatigue 

increased appetite 

thirst” 

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Let’s move away from the discoverer named Somogyi effect and go back to the dawn effect. That must have symptoms, too. And there they are, right on MedicalNewsToday again. 

“faintness 

nausea 

vomiting 

blurry vision 

weakness 

disorientation 

feeling tired 

extreme thirst” 

Wait a minute. I’ve been nauseous for the last two days as well as feeling tired and having extreme thirst. There must be something I can do about this situation. Watch me run to the Mayo Clinic. Sure enough, they have the advice I was looking for: 

  • Avoid carbohydrates at bedtime. 
  • Adjust your dose of medication or insulin. 
  • Switch to a different medication. 
  • Change the time when you take your medication or insulin from dinnertime to bedtime. 
  • Use an insulin pump to administer extra insulin during early-morning hours. 

You know, the only thing I can do by myself is the first suggestion. It’s a good thing I have an appointment with my endocrinologist coming up very soon. 

Of course, there are other causes of occasional high blood glucose when you awaken. Stress, anxiety, having high carbohydrate snacks before bedtime, illness, and lack of exercise also play their role in high blood glucose. 

Let’s talk about anxiety. In these CoVid times, we can get pretty anxious. You don’t want it contributing to the dawn effect [should you incur that].  

  • “Any type of physical activity, even if it’s just a quick walk around the block during your lunch break. 
  • Meditation or yoga 
  • Speaking to a supportive friend, coworker or clergy. 
  • Being gentle with yourself—give yourself a break and don’t be so hard on yourself. 
  • Doing something fun, like engaging in a hobby or reading. 
  • Eating healthy foods. 
  • Reducing or eliminating your alcohol and caffeine consumption 
  • Getting enough sleep 

If your anxiety continues for more than two weeks or if you’re finding it difficult to complete everyday activities, you should consider talking to a counselor or psychologist who can provide help and direction.” 

Thank you to Raleigh Medical Group for these suggestions. 

Until next week, 

Keep living your life! 

Not Polycystic Kidney Disease

My sister-in-law and I were discussing my brother’s health the other day. For the first time, she told me a cyst had been noticed on his left kidney. Wait a minute, I have a cyst on my left kidney. Was this something familial? 

Let’s start at the beginning with the definition of a kidney cyst. This one is from the Mayo Clinic

“Kidney cysts are round pouches of fluid that form on or in the kidneys. Kidney cysts can be associated with serious disorders that may impair kidney function. But more commonly, kidney cysts are a type called simple kidney cysts — noncancerous cysts that rarely cause complications.” 

That’s not much different from the definition of cysts, except that these form on or in the kidneys. 

Front view of kidney with simple cyst.

You’ve probably read about a kidney disease that causes multiple cysts on the kidneys: polycystic kidney disease or PDK. According to The National Kidney Foundation

“Polycystic kidney disease (also called PKD) causes numerous cysts to grow in the kidneys. These cysts are filled with fluid. If too many cysts grow or if they get too big, the kidneys can become damaged. PKD cysts can slowly replace much of the kidneys, reducing kidney function and leading to kidney failure.” 

It’s also an inherited disease, but that’s not what we’re looking at today. We’re dealing with one or two isolated cysts. Naturally, our next question should be why do some of us develop these. The Cleveland Clinic sort of has the answer: 

“Kidney cysts occur when the tube of a nephron begins to get bigger and fill with fluid. Researchers don’t know what causes this to occur, but they do know that simple cysts aren’t inherited. It is believed that injury or microscopic blockages in the tubules may lead to the development of some simple kidney cysts.” 

We have the theory, but no proof. One thing is certain, this type of kidney cyst is not inherited as those in PKD are.  

A definition of nephrons might be in order here… just in case you forgot what they are. This is how I defined them in my first book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease

“Nephrons: The part of the kidney that actually purifies and filters the blood.” 

That book was written so long ago that my name was still Gail Rae, but some things don’t change – like the definition of nephrons. 

Back to the question about the fact that my brother – my sibling – and I both have simple kidney cysts. I could not find any definitive evidence that our being related had anything to do with us both having simple kidney [or renal] cysts. I did learn that age has a lot to do with it and that males are more likely to develop renal cysts. I also learned that they are not uncommon. 

I know mine was picked up in routine scans, as was my brother’s. I became curious as to whether there was another way of discovering simple renal cysts. WebMD explained that you may have symptoms: 

“Simple kidney cysts usually don’t cause symptoms. In most cases, a doctor finds them during an ultrasound or computerized tomography (CT) scan done for another reason. If you do have symptoms, they may include: 

Pain in your side, back, or upper abdomen if they enlarge and press on other organs 

Fever, chills, or other signs of infection 

Blood in your urine 

Blocked blood or urine flow through your kidneys (rare) 

Impaired kidney function (rare) 

Simple kidney cysts have been associated with high blood pressure, but it is unclear what the relationship is between the two.” 

Okay, so you know you have a renal cyst. What do you do now? Usually nothing as MedicalNewsToday makes clear: 

“Most simple kidney cysts do not need any treatment beyond periodic monitoring. 

Kidney cysts that cause symptoms may require treatment, particularly if they block the flow of urine or blood through the kidneys. In these cases, a doctor may recommend draining the cyst, using a procedure called sclerotherapy. 

During sclerotherapy, a doctor uses ultrasound to guide a needle to the cyst. The sac of fluid is then punctured with the needle and drained. 

Next, the doctor will inject a saline solution into the area to harden the surrounding tissue and prevent another cyst from forming. The procedure is done using local anesthesia and on an outpatient basis. 

In rare cases of a very large cyst, surgery may be required to drain or remove the growth. Normally, this is done with a small tool that has a light and camera on one end that allows the surgeon to keep the incision small. 

Kidney cyst removal is usually performed in a hospital under general anesthesia. 

In the case of an infected cyst, antibiotic therapy may be started prior to any other treatment.” 

Cedars-Sinai explicates two other methods of renal cyst removal.

“Retrograde Intrarenal Surgery (RIRS) 

RIRS is the treatment of choice when the cyst can be reached from the draining portion of the kidney basin. A small telescope goes through the natural opening of the body, into the ureter and up into the kidney. A cut is made with a laser, and the cyst is opened into the draining system. A small tube (stent) is left in the ureter for about two weeks to allow proper healing. RIRS is an outpatient procedure. The stent is removed in the office. 

Percutaneous Kidney Surgery 

Percutaneous kidney surgery is done for large cysts in the back of the kidney. This is a minimally invasive method that allows the surgeon to do endoscopic surgery within the kidney using a small tract. A tract is an opening created by a small incision through the skin and tissues directly into the kidney. A sleeve is placed into the kidney, bridging the distance from the skin. The doctor performs the surgery by guiding endoscopic instruments through the sleeve into the kidney. Under X-ray control, the cyst is opened and a large portion of the wall is removed. This procedure usually requires an overnight stay in the hospital.” 

Who knew that a simple kidney cyst could be so complicated? 

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! 

There’s a Connection? 

A reader who has become an online friend told me he had been seeing a hematologist for blood clots. It never occurred to me that this had anything to do with chronic kidney disease. I thought we were just chatting. He realized I didn’t get the connection and pointed it out. [Thank you, Geo.] Wow, this was yet another thing I hadn’t known about CKD. Let’s find out what we can about blood clots and ckd together. 

According to the National Kidney Foundation

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

VTE? Here we are in alphabet city. I turned to World Thrombosis Day for a definition: 

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

Ugh! More alphabet city, but at least we know what we’re dealing with now. 

Only four years ago, Boston University School of Medicine researchers made a discovery that could help explain why ckd may lead to blood clots: 

“Chronic kidney disease is associated with buildup of urea in the blood, and leads to accumulation of ‘uremic’ solutes which was thought to result in cardiovascular toxicity including thrombosis.” 

Do you remember what urea is? Don’t worry. The dictionary tells us it is, 

.

“a colorless crystalline compound which is the main nitrogenous breakdown product of protein metabolism in mammals and is excreted in urine.” 

The National Center for Biotechnology Information [NCBI] may be able to be of further assistance if I supply a few definitions. 

“Patients with CKD manifest a coagulopathy consisting of delayed clot formation, but increased final clot strength and decreased clot breakdown. Furthermore, the elevated clot strength is mediated by increased fibrinogen levels in CKD patients.” 

Turns out we only need two definitions: coagulopathy and fibrinogen. Healthgrades defines coagulopathy as: 

“Coagulopathy is a condition in which the blood’s ability to clot is impaired. This condition can cause prolonged or excessive bleeding, which may occur spontaneously or following an injury or medical and dental procedures. Coagulopathy can be a primary medical condition or a complication of some other disorder.” 

Our other word needing a definition is fibrinogen. Healthline to the rescue! 

“Fibrinogen, or factor I, is a blood plasma protein that’s made in the liver. Fibrinogen is one of 13 coagulation factors responsible for normal blood clotting. 

When you start to bleed, your body initiates a process called the coagulation cascade, or clotting cascade. This process causes coagulation factors to combine and produce a clot that’ll stop the bleeding. 

If you don’t have enough fibrinogen or if the cascade isn’t working normally, clots will have difficulty forming. This can cause excessive bleeding.” 

By now, you probably get why CKD can cause excessive bleeding, but what about ‘increased final clot strength and decreased clot breakdown?’ PubMed was helpful here: 

“Fibrinogen and platelets combine to generate a mature clot, but in CKD platelets are dysfunctional.” 

 
We’re all over the medical map here. What do platelets have to do with CKD causing blood clots? And what are they anyway? It might help if you knew that their alternative name is thrombocyte…  the same root as in thrombosis or blood clot. Remember also, that your blood cells have three parts: white cells to ward off infection, red to carry oxygen throughout your body, and platelets to help the blood clot. Bingo! 

Of course, now we need to know why CKD patients have dysfunctional platelets. I read bunches of too technical articles and studies about this for the blog. Only one word I could understand stood out for me. Uremia. Having too much urea in the blood. The result of the kidneys doing a poor job of filtering uremic toxins. The kidneys. CKD…. and that is how ckd and blood clots are connected, folks. 

I have to admit this was a tough blog to write. I usually write a blog in one sitting, but this one took two days of multiple sittings in order to understand what I was reading and simplify it so I could write about it. Some blogs are like that. 

Topic change: I’m in the midst of reading Amy Donohue’s Social Media Stole My Kidney which was published only two and a half months ago. Here’s what Amy has to say about her book: 

“Amy Donohue saw a tweet one night in January 2011. A friend’s mom had just agreed to be put on the kidney donor list, as her kidney disease was getting worse every year. Amy saw the tweet and responded ‘I’ll do it. I’ll donate my kidney. What do I have to do?’ 

During the testing process, Amy lost her job, got a new one, met amazing people in the community, and learned about life and love. 
 
This book also informs and educates those who may be interested in being a living donor, with tips on recovery in the hospital and at home.” 

Amy guest blogged about her kidney donation back in July of this year. I recommend this book to anyone even wondering about what it’s like to donate a kidney. While the information is not new to me, I think it will be to anyone who is a kidney novice. Amy writes in an easy going, reader friendly style so it’s fun to read, too. Having met her several times, I am lucky enough to see her, in my mind’s eye, speaking the words she wrote. She’s a pretty animated gal. 

Until next week,

Keep living your life!

Never Heard of It 

The ‘it’ in question here is Dent disease. I thought maybe it was something that edema caused. You know, you poke your finger into a water retaining limb and the dent stays there. It turns out it has nothing to do with dents as we know them. 

Rarediseases.org cleared up my misconception. 

“Dent disease was first reported in the medical literature in 1964 by Drs. Dent and Friedman who described two unrelated boys with rickets. The disorder was eventually fully described by Dr. Oliver Wrong in 1990 who named the disease after his colleague and mentor Dr. Dent. Over the years Dent disease was referred to by other names including X-linked recessive nephrolithiasis with renal failure, X-linked recessive hypercalciuric hypophosphatemic rickets, and idiopathic low-molecular-weight proteinuria with hypercalciuria and nephrocalcinosis. Generally, Dent disease is now broken into type 1 and type 2 based upon the specific genetic mutation present. There are other individuals with Dent disease who lack known mutations of these two genes (non 1/ non 2).” 

Aha! So, as often is the case, the disease was named after the doctor who first discovered it. The alternative names for the disease are much too involved and complicated for the layperson to remember as far as I’m concerned. 

‘Mutations of these two genes?’ What two genes? MedlinePlus, a part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health made it almost easy to understand not only which genes, but what their purposes are. 

“Dent disease can result from mutations in the CLCN5 or OCRL gene. Mutations in the CLCN5 gene cause Dent disease 1, which accounts for about 60 percent of all cases of Dent disease. Mutations in the OCRL gene cause Dent disease 2, which accounts for about 15 percent of all cases. In the remaining 25 percent of cases, the genetic cause of the disorder is unknown. 

The proteins produced from the CLCN5 and OCRL genes play critical roles in normal kidney function, particularly the function of the proximal tubules. These structures help to reabsorb nutrients, water, and other materials that have been filtered from the bloodstream. The kidneys reabsorb needed materials into the blood and excrete everything else into the urine. Studies suggest that mutations in the CLCN5 or OCRL gene disrupt the reabsorption function of the proximal tubules, which leads to the progressive kidney problems found in people with Dent disease. 

Because the OCRL gene is active (expressed) throughout the body, it is unclear why Dent disease 2 primarily affects the kidneys and, to a lesser extent, the brain, eyes, and other tissues.” 

Another tidbit I picked up from multiple sites is that it is almost exclusively a male’s disease, although female carriers may have some slight symptoms. That’s because it is associated with x sex chromosomes. Females have two x chromosomes; males only have one. The other male sex chromosome is y. One x chromosome is more vulnerable than two are. 

Okay, now the question is how do you get this disease? Heredity, folks, unfortunately heredity. The good news is that it’s a rare disease. 

Of course, now we want to know the symptoms. Well, at least, I do. Wikipedia was helpful here, but you need to keep in mind that anyone can edit a Wikipedia entry. 

  • “Extreme thirst combined with dehydration, which leads to frequent urination 
  • Nephrolithiasis (kidney stones) 
  • Hypercalciuria (high urine calcium – >300 mg/d or >4 mg/kg per d) with normal levels blood/serum calcium) 
  • Aminoaciduria (amino acids in urine) 
  • Phosphaturia (phosphate in urine) 
  • Glycosuria (glucose in urine) 
  • Kaliuresis (potassium in urine) 
  • Hyperuricosuria (excessive amounts of uric acid in the urine) 
  • Impaired urinary acidification 
  • Rickets” 

Looks to me like these symptoms are all over the nephrology map. How do you treat them? The Genetic and Rare Diseases Information Center [GARD], part of National Center for Advancing Translational Sciences, which – in turn – is part of the National Institutes of Health [wait, we’re not done yet], a part of the U.S. Department of Health and Human Services was as helpful as the site’s name is long:  

“No standard guidelines have been established for the treatment of Dent disease. The main goals of treatment are to decrease hypercalciuria, prevent kidney stones and nephrocalcinosis, and delay the progression of chronic kidney disease (CKD). 
 
Thiazide diuretics in doses greater than 0.4 mg/kg/day have decreased urinary calcium excretion by more than 40% in boys with Dent disease. However, frequent side effects included hypokalemia, volume depletion, and cramping. Careful dosing and close monitoring for these side effects are necessary. 
 
Angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs) have been used in children with proteinuria to prevent or delay further loss of kidney function. However, their effectiveness has not been clear. 
 
Although a high citrate diet has been used in the treatment of Dent disease (aiming to slow progression of CKD), no human trials have proven its effectiveness. 

I realize I’ve been using some terms that have not been defined. We’ll take care of that right now. Thank you to MedicineNet for the definitions. 

“hypophosphatemic rickets – A familial form of rickets characterized by hypophosphatemia (low blood phosphate level), defective intestinal absorption of phosphate, and rickets unresponsive to vitamin D. The basic problem is decreased resorption of phosphate by the tubules in the kidney. 

nephrocalcinosis – The deposition of calcium (in the form of calcium phosphate and calcium oxalate) in the substance of the kidney, a process that can impair the function of the kidney function. The disorder may be symmetric or, in anatomic disorders such as medullary sponge kidney, involve only a single kidney. 

Thiazide diuretics (water pills) – medications that are used to treat high blood pressure (hypertension) and reduce fluid accumulation in the body. They work by reducing the ability of the kidneys to reabsorb salt and water from the urine and into the body thereby increasing the production and output of urine (diuresis).” 

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! 

Water, Water, Everywhere

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

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

Photo by Pixabay on Pexels.com

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

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

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

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

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

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

The kidneys play a key role in balancing fluid levels. 

These two functions make water vital to the kidneys. 

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

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

Water is essential for the kidneys to function. 

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Podocytes Revisited

I haven’t written about these important little guys in almost a decade, so I thought it might be time. Way back then, I introduced them in SlowItDownCKD 2011.  

“Hope for Treating Chronic Kidney Disease Via Regeneration of Specialized Cells 

                 by Kathy Jones on December 06, 2011, at 7:26 PM                     Genetics & Stem Cells News         

Pedocytes are specialized type of epithelial cells in the kidney, which get damaged in more than 90 percent of all chronic kidney disease cases. 

 Now researchers at the Stanford University School of Medicine have uncovered an unexpected pathway that reveals for the first time how these cells may regenerate and renew themselves during normal kidney function. 

This finding is an important step toward one day therapeutically coaxing the cells to divide, which could be used to treat people with chronic kidney disease. 

‘Researchers have studied these cells for years, but the prevailing view has been that they don’t renew themselves,’ said associate professor of medicine Steven Artandi, MD, PhD. ‘Now we’ve found that podocytes can enter and leave the cell cycle in response to certain common signaling pathways.’ …. 

Podocytes are found only in the kidney and are an integral structural component of its blood-filtering system. They stand shoulder-to-shoulder in a part of the organ called the glomerulus and wrap their long ‘feet’ [Gail here: ped means foot in Latin, while pod means foot in Greek] the semi-permeable capillaries through which blood flows. Narrow slits between the feet allow small molecules, such as water and salts, to pass while blocking large proteins. 

This filtering process is the first step to forming urine, and it is critically important — even one missing cell can leave a gap that would allow unwanted molecules through the barrier. (Imagine wrapping your hands around a length of leaky garden hose so that the water seeps out between your fingers. Lift up one finger and you’re liable to get sprayed in the face.) 

This may be why previous researchers searching for signs of self-renewal in podocytes were unsuccessful, because any such renewal or replacement would likely need to be carefully orchestrated to avoid compromising the filtration system. As a result, scientists have been forced to conclude that the podocytes rarely, if ever, divided. 

‘It used to be thought that you were born with podocytes, and you died with the same podocytes — you don’t make any more during your lifetime,’ said Artandi. The only exception was certain rare types of kidney disease in which the podocytes abandon their blood-filtration duties en masse to de-differentiate into less-specialized, dividing cells that little resemble their predecessors. As a result, the glomerulus collapses and the patients’ kidneys begin to fail. One such disease is HIV-associated nephropathy, or HIVAN. 

The problem was, such a scenario doesn’t make a lot of evolutionary sense — particularly when other epithelial cells routinely regenerate themselves. ‘Podocytes are vitally important, and are also under enormous physical stress,’ said Artandi. ‘It’s hard to understand why we would have such a vulnerable blood-filtration system.’ 

To understand more about kidney biology, Artandi and Shkreli investigated the role of a protein component of the telomerase complex called TERT. Although telomerase is best known as an enzyme involved in cell aging, recent research in Artandi’s lab and others have shown that TERT also plays a role in many types of cellular regeneration. 

The researchers found that temporarily increasing the expression of TERT in adult, otherwise healthy laboratory mice caused the formerly stolid podocytes to abruptly de-differentiate and begin dividing. As a result, the glomerulus collapsed in a way that resembles what happens in humans with HIVAN. Conversely, ceasing the overexpression allowed the cells to stop dividing, re-specialize and resume their normal functions. 

When Artandi and Shkreli looked closely at the glomeruli in humans with HIVAN, they found that TERT expression was increased. Equally important, the Wnt signaling pathway, which is important in embryonic development and in the self-renewal of stem cells, was also activated. (Previous research in the Artandi lab has linked telomerase activity to the Wnt pathway.)  Blocking Wnt signaling in a mouse model of HIVAN also stopped the podocytes from dividing and improved their function. 

‘The implication is that podocytes may utilize recognized pathways of regeneration to renew themselves throughout life,’ said Artandi. People suffering from chronic kidney disease may simply have worn out or outpaced their podocytes’ capacity for renewal, he believes. 

Now that the researchers know podocytes have the ability [sic] regenerate in response to common cellular signals, their next step is to learn whether this regeneration occurs in healthy animals and people. ‘If we can harness this regeneration,’ Artandi said, ‘we may one day be able to treat people with chronic kidney disease.’” 

‘The URL for this article is  http://www.medindia.net/news/Hope-for-Treating-Chronic-Kidney-Disease-Via-Regeneration-of-Specialized-Cells-94388-1.htm 

That was then. Let’s see what more current info on podocytes tells us.  

This is from the September 2020 issue of Karger Journals which is a 131-year-old publisher of health sciences.  

“Podocytes are highly specialized cells located in the glomeruli, are incapable of undergoing mitosis [Gail again: this means splitting.] under normal conditions, and are mainly committed to avoid the loss of proteins in the urine. Their loss in the urine, defined as podocyturia, determines the appearance of glomerulosclerosis, proteinuria, and CKD. Podocyturia antedates proteinuria as a biomarker of kidney dysfunction, but at the present time, it is not a validated method to be employed in clinical grounds. Its main indication is to unravel the pathophysiological mechanisms of glomerular diseases.” 

Now I’m wondering why not? If podocyturia shows up before proteinuria, why allow it to progress to proteinuria? By the way, proteinuria is just what it sounds like: spilling protein in your urine instead of keeping it where it should be – in the blood. Is there no way to test for podocyturia? Is that the problem? 

But wait. I found this in a research paper by J. Bras Nefrol in the Brazilian Journal of Nephrology from back in 2013: 

“One of the assays used to assess podocyturia is indirect immunofluorescence with specific antibodies directed against podocyte antigens in urinary sediments.” 

This was in reference to lupus nephritis, but if the test can be used to detect one form of kidney disease, why not others? Of course, I’m not a doctor and have never claimed to be one. That’s important here because it explains that there is so much I don’t know that nephrologists do. I wish they’d explain why we can’t use this test for podocyturia. It might be able to prevent kidney disease. 

Until next week, 

Keep living your life! 

What the Heck is a Flozinator?

That’s the question I’ve been asking myself for weeks after seeing the term used on Twitter by such luminaries as Joel M. Topf, MD FACP [That means Fellow of the American College of Physicians.], The Nephrology Journal Club, nephrologist Swapnil Hiremath, and pediatric nephrologist Michelle Rheault, among others. First, I thought it was solely a nephrologists’ thing but hey, when has that ever stopped me? 

While the term is a new one, it’s traveled fast. It’s now accepted in the medical community. For example, this is the title of a paper published on PubMed, specifically on the National Institutes of Health’s National Library of Medicine’s National Center for Biotechnology Information site.   

“Biologically Plausible Trends Suggesting that Low-Protein Diet May Enhance the Effect of Flozination by SGLT2 Inhibitor Dapagliflozin on Albuminuria” 

Now we just need to know what the word means. While I couldn’t find a dictionary definition, I gathered from the twits [posts on Twitter] which I read that it means a doctor who uses empagliflozin, dapagliflozin and canagliflozin when treating a patient. Nice, so what are they? And how am I to explain in slightly under 900 words max? 

Let’s start with what I wrote about dapagliflozin on October 7th, 2019: 

“The obvious first stop to my way of thinking was Medline Plus, part of the U.S. Library of Medicine, which in turn, is part of the Institutes of National Health. 

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

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

[Could not find any attribute for this chart. Please let me know if you know the authors.]

Okay, got it. I’ll bet you do, too. On to canagliflozin. This is from my December 30th, 2019, blog: 

“I scooted over to EurekAlert! when I realized they were announcing a drug I’d blogged about: 

‘A drug like canagliflozin that improves both cardiovascular and renal outcomes has been eagerly sought by both patients with Type 2 diabetes and clinicians caring for them,’ added Kenneth Mahaffey, MD, professor of medicine at the Stanford University School of Medicine and co-principal investigator of the trial. ‘Now, patients with diabetes have a promising option to guard against one of the most severe risks of their condition.’ 

The researchers found the drug canagliflozin, a sodium glucose transporter 2 (SGLT2) inhibitor, was less effective at lowering blood sugar in people with reduced kidney function but still led to less kidney failure, heart failure and cardiovascular events such as heart attacks, strokes and death from cardiovascular disease. 

Professor Perkovic said the results were impressive. ‘The substantial benefit on kidney failure despite limited effects on blood glucose suggest that these drugs work in a number of different ways beyond their effects on blood sugar. This is an area of intense ongoing research.’”  

Notice that drug, just like the one before it and the one I’ll be writing about next end in ‘flozin.’ That should give you the biggest hint of what a flozinator does. 

Back to MedlinePlus

“Empagliflozin is used along with diet and exercise, and sometimes with other medications, to lower blood sugar levels in people with type 2 diabetes …. Empagliflozin is also used to reduce the risk of stroke, heart attack, or death in people who have type 2 diabetes along with heart and blood vessel disease. It is in a class of medications called sodium-glucose co-transporter 2 (SGLT2) inhibitors. Empagliflozin lowers blood sugar by causing the kidneys to get rid of more glucose in the urine. It is not used to treat type 1 diabetes (condition in which the body does not produce insulin and, therefore, cannot control the amount of sugar in the blood) or diabetic ketoacidosis (a serious condition that may develop if high blood sugar is not treated). 

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

You may know this as the drug Jardiance. 

Notice all three are classified as SGLT2 inhibitors. I decided to take a look at the FDA’s website

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

It looks like we’ve come full circle so it must be time to say goodbye. Wait! I almost forgot to mention that the Nephrology Journal Club is selling Flozinator merchandise. In their own words:

“We, at #NephJC, want to see SGLT2i blow-up and turn the tide in the war on chronic kidney disease. These drugs are amazing.

We also want to keep the work we do at NephJC moving forward and for that we need money. So we are putting these two goals together in the form of Merch!

Help us keep the #FOAMed flowing and tell the world that you are a FLOZINATOR!”

The address for merchandise is http://www.nephjc.com/flozinator. In addition to the mug, they also have pins and t-shirts. Doctors, are you listening?

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: 

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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.” 

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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! 

To Biopsy or Not to Biopsy

My husband of eight years, Bear, is a veteran. We won’t be celebrating him today, but we will on Veterans Day. Today, we celebrate those who weren’t able to return to us, to marry, to have children or grandchildren, to further their education, or start the business of their dreams. Today, we celebrate those who never got the chance to discover and develop their art or their craft, the ones who didn’t grow older. Today is Memorial Day and we remember all those who fought so we didn’t have to. I’ve thrown in a couple of clichés because they work here; they’re meaningful. Thank you fallen warriors for your sacrifice and thank you to your families, too. 

There is no way to glide into today’s blog topic from the above tribute, so I’ll just plunge ahead. 

I read about people having kidney biopsies all the time and I wonder why I never had one. Mind you, I’ve been wondering this for well over a decade. It’s time to find out, don’t you think? 

For those who don’t recognize the term: 

“A biopsy is a procedure that removes cells or tissue from your body. A doctor called a pathologist looks at the cells or tissue under a microscope to check for damage or disease. The pathologist may also do other tests on it. 

Biopsies can be done on all parts of the body. In most cases, a biopsy is the only test that can tell for sure if a suspicious area is cancer. But biopsies are performed for many other reasons too. 

There are different types of biopsies. A needle biopsy removes tissue with a needle passed through your skin to the site of the problem. Other kinds of biopsies may require surgery.” 

Thank you to MedlinePlus for that information. MedlinePlus is part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health. 

Oh, a little more about pathologists. They study the causes and effects of diseases, so it makes sense that they would be the ones at the microscope.  

Let me give you an example of a biopsy. We all know I had pancreatic cancer. It was diagnosed via a fine needle aspiration. WebMD explains: 

“In fine needle aspiration, a thin needle is inserted into an area of abnormal-appearing tissue or body fluid. As with other types of biopsies, the sample collected during fine needle aspiration can help make a diagnosis or rule out conditions such as cancer. Fine needle aspiration is generally considered a safe procedure. Complications are infrequent.” 

Because the organ being biopsied was the pancreas, a needle could not be inserted into the skin. The pancreas is well hidden in the body, so an endoscopy was performed. That’s the opposite of a colonoscopy. [Lots of ‘scope’ or ‘scopy’ words today.] Instead of a long thin tube being inserted into the anus, it was inserted into the mouth and a fine needle was threaded through this tube to obtain the necessary tissue. 

Got it? Now, how is a kidney biopsy performed and why? Or in my case, why not? 

I turned to my trusted friend The MayoClinic for some answers. 

“A kidney biopsy may be done to: 

Diagnose a kidney problem that can’t otherwise be identified 

Help develop treatment plans based on the kidney’s condition 

Determine how quickly kidney disease is progressing 

Determine the extent of damage from kidney disease or another disease 

Evaluate how well treatment for kidney disease is working 

Monitor the health of a transplanted kidney or find out why a transplanted kidney isn’t working properly”  

Well, that all makes sense to me so why didn’t my nephrologist order one for me? [I’m starting to sound like the one kid in the class who wasn’t invited to the birthday party.] The paper Patient education: Kidney (renal) biopsy (Beyond the Basics) written by William L Whittier, MD, FASN and Stephen M Korbet, MD, MACP published on UpToDate clarified for me: 

“The following are the most common reasons for kidney biopsy. You may have one or more of these problems, but not everyone with these problems needs a kidney biopsy: 

●Blood in the urine (called hematuria). … 

●Protein in the urine (called proteinuria) – This occurs in many people with kidney problems. A kidney biopsy may be recommended if you have high or increasing levels of protein in the urine or if you have proteinuria along with other signs of kidney disease…. 

●Problems with kidney function – If your kidneys suddenly or slowly stop functioning normally, a kidney biopsy may be recommended, especially if the cause of your kidney problem is unclear.” 

Oh, I see. I didn’t have hematuria and my proteinuria was minimal. The cause of the problem seemed to be clear. I was getting older and so were my kidneys. [Maybe I really didn’t want to be invited to this birthday party after all.] 

I still wanted to know how the procedure was done. Was a needle really stuck through your skin? Did it hurt? The National Institute of Diabetes, and Digestive and Kidney Diseases, also part of the National Institutes of Health, offered an extremely detailed answer. 

“The procedure typically takes about an hour and includes the following steps: 

Most people will lie on their abdomen on an examination table. The technician will place a firm pillow or sandbag under a person’s body to support the abdomen and help push the kidneys up toward the person’s back and the surface of the skin. People who have a transplanted kidney lie on their backs because surgeons place transplanted kidneys in the front-lower part of the abdomen, to one side of the bladder. 

A nurse or technician will give the person sedatives through the IV. 

The health care provider will mark the point where the needle will enter the skin, clean the area, and inject a local anesthetic to numb the area. 

Next, the health care provider uses imaging techniques, such as ultrasound, to guide the biopsy needle into the kidney. Ultrasound uses a device called a transducer that bounces safe, painless sound waves off organs to create an image of their structure. Sometimes the health care provider uses a computerized tomography scan or magnetic resonance imaging to guide the needle into the kidney. 

The health care provider will ask the person to hold his or her breath and stay still as the health care provider inserts the biopsy needle and removes the kidney tissue. When the health care provider takes the biopsy, the instrument will make a clicking or popping noise. The health care provider may need to insert the needle three or four times. People most often will need to hold their breath for about 30 seconds or a little longer for each insertion. 

The health care provider uses imaging techniques such as ultrasound to guide the biopsy needle into the kidney. 

For people with bleeding problems, the health care provider uses a laparoscope—a thin tube with a video camera. This procedure is surgery that requires general anesthesia. The surgeon makes a small incision into the back and inserts the laparoscope to see the kidney. The surgeon can insert tiny tools through the laparoscope to collect tissue samples and can watch after the procedure through the camera to make sure that if there is any bleeding, he or she can stop it.” 

Now I know… and so do you. 

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. 

Regulating Blood Pressure: The Renin-Angiotensin-Aldosterone System

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 Do You Know? 

Often, people will ask me how I knew I had Chronic Kidney Disease. I didn’t have any symptoms although I did suffer from high blood pressure, which is the second most common cause of CKD. Well, how did I know then?

When I changed doctors to one closer to my home, she had her own set of thorough tests completed for me as a new patient. One of them was the eGFR [estimated Glomerular Filtration Rate]. She saw that 39% and had me in a nephrologist’s office the next day. The National Kidney Foundation explains why:  

“When your kidneys are working well, they filter out wastes and excess fluid that become part of the urine your body makes each day. When kidneys aren’t working well, you do not remove enough wastes and fluids to keep you healthy. You also cannot make important hormones for your blood and bones. Your GFR number is an estimate of how well your kidneys are working and keeping you healthy. If your GFR number is low, your kidneys are not working as well as they should. Early detection will allow for early treatment. Early treatment may keep kidney disease from getting worse.” 

Remember those old television commercials that announced, “But wait! There’s more.” That applies here, too. In addition to the blood test for eGFR, I needed a urine test. Thank you to The American Kidney Fund for revealing the necessity of this: 

“When your kidneys are damaged, they may let protein leak into your urine. This can be one of the earliest signs of kidney disease. To check for protein in your urine (called proteinuria), your doctor may suggest a urine test. There are two types of urine tests your doctor may use. 

Dipstick urine test 

A dipstick urine test tells your doctor if there is protein in your urine. Your doctor may test your urine in the office or ask you to bring a sample from home. If your first dipstick urine test shows protein in your urine, ask your doctor when you should be tested again. Also ask if a urine albumin-to-creatinine (UACR) test is right for you. 

Urine albumin-to-creatinine ratio (UACR) 

A UACR test tells your doctor how much albumin is in your urine. Your doctor will test your urine to see how much albumin (a type of protein) and creatinine (a kind of waste) are in it. Your doctor will compare these results to figure out your UACR. A normal UACR is less than 30mg/g. If your UACR is more than 30 mg/g, ask your doctor when you should be tested again. Also ask your doctor if you should have an eGFR test.” 

These two tests, the former gold standard for assessing CKD, seem to be falling out of favor. You see, the blood test relies on race as one of its elements. I was taught that was because Afro-Americans have a denser muscle mass. Okay, that seemed acceptable. It also seems that this is no longer acceptable. I understand that racism must be combatted, but what about the science of denser muscle mass? If I’m correct, that’s one of the reasons Cystatin-C is slowly becoming the norm in CKD testing, but certainly not the only one.  

What is Cystatin-C? Let’s find out together. The most easily understood explanation I found was. The Medical Center of the University of Rochester’s

“Your body makes cystatin C constantly, and the protein is found in different fluids, including blood, spinal fluid, and breast milk. When your kidneys are healthy, they filter cystatin C out of the blood so it can be excreted in your urine. 

This is a fairly sensitive blood test to look at your kidney health. Cystatin C can be used to calculate your glomerular filtration rate (GFR). Your healthcare provider can use this to see how well your kidneys are working and if there is a problem. It can also be used to check the progress of your disease, if you have kidney problems.” 

I wasn’t sure enough about this being the best test for CKD, so I turned to Lab Tests Online to see what they had to say. 

“Because cystatin C levels fluctuate with changes in GFR, there has been interest in the cystatin C test as one method of evaluating kidney function. Tests currently used include creatinine, a byproduct of muscle metabolism that is measured in the blood and urine, blood urea nitrogen (BUN), and eGFR (an estimate of the GFR usually calculated from the blood creatinine level). Unlike creatinine, cystatin C is not significantly affected by muscle mass (hence, sex or age), race, or diet, which has led to the idea that it could be a more reliable marker of kidney function and potentially used to generate a more precise estimate of GFR. 

While there are growing data and literature supporting the use of cystatin C, there is still a degree of uncertainty about when and how it should be used. However, testing is becoming increasingly more available and steps are being taken toward standardizing the calibration of cystatin C results.” 

Ah, I see, race need not be taken into account. Hmmm, neither does sex, age, or diet. This almost sounds too good to be true. 

Whoops! I haven’t reminded you what the BUN [blood urea nitrogen] test mentioned above is. My longtime standby, The Mayo Clinic clarifies: 

“A common blood test, the blood urea nitrogen (BUN) test reveals important information about how well your kidneys and liver are working. A BUN test measures the amount of urea nitrogen that’s in your blood. 

Here’s how your body typically forms and gets rid of urea nitrogen: 

Your liver produces ammonia — which contains nitrogen — after it breaks down proteins used by your body’s cells. 

The nitrogen combines with other elements, such as carbon, hydrogen and oxygen, to form urea, which is a chemical waste product. 

The urea travels from your liver to your kidneys through your bloodstream. 

Healthy kidneys filter urea and remove other waste products from your blood. 

The filtered waste products leave your body through urine. 

A BUN test can reveal whether your urea nitrogen levels are higher than normal, suggesting that your kidneys or liver may not be working properly.” 

Considering the information uncovered in today’s blog, I don’t think I’d mind at all if my nephrologist started to use the Cystatin-C method to test my eGFR. How about you? 

Until next week, 

Keep living your life! 

What About My Kids?

It’s May already. I don’t know if it’s lockdown that’s making the months seem to fly by or if it’s that I don’t look at the calendar very often. Either way, I know my first born’s birthday is May 6th. Happy birthday, my lovely Nima. By the way, Nima is Tibetan for the sun and my world did revolve around her just as our planet revolves around the sun. 

But when I was diagnosed with Chronic Kidney Disease way back in 2008, I became a bit nervous. Was this something I could conceivably [nice play on words, huh?] have passed on to her or her younger sister… and now that sister’s son? You’ve probably figured out that this mother worried about her children became the world’s best researcher overnight. Hmmm, that was 13 years ago. I wonder what the current research tells us about this. 

According to the University of Michigan’s Michigan Medicine, over 60 types of kidney disease can be inherited. These include: 

“Autosomal Dominant Polycystic Kidney Disease (ADPKD): The most common inherited kidney illness, ADPKD causes cysts to form on the kidneys. It occurs in about one in 800 people, and is passed down from parent to child through generations. Major health problems from ADPKD usually occur in adulthood, with more than 30,000 people in the U.S. each year suffering kidney failure as a result.  

Autosomal Recessive Polycystic Kidney Disease (ARPKD): This condition is also characterized by cysts, and affects about 1 in 20,000 people. ARPKD generally causes symptoms in early to late childhood. Learn more about dominant and recessive polycystic kidney disease on the PKD Foundation website. 

Thin Basement Membrane Disease 

Gitelman and Bartter Syndromes 

Collagen-related kidney diseases including Alport Syndrome: Learn more about Alport Syndrome on the Alport Syndrome Foundation website.  

Lowe Syndrome: Learn more about Lowe Syndrome on the Lowe Syndrome Association website. 

Hereditary Interstitial Kidney Disease: Gout associated inherited kidney diseases 

Tuberous Sclerosis 

Cystinosis: Learn more about Cystinosis on the Cystinosis Research Network website. 

Fabry Disease 

Nephronophthisis” 

While I’ve written about many of these, there are some that are new to me – and possibly to you – so I’ll write just a little bit about each of those. Also note that some of the websites are linked for you. 

Thank you, UNC School of Medicine‘s Kidney Center for the following: 

“TBM disease (also known as benign familial hematuria and thin basement membrane nephropathy) is, along with IgA nephropathy, the most common cause of blood in the urine without any other symptoms. The only abnormal finding in this disease is a thinning of the basement membrane of the glomeruli (filters) in the kidneys. Most patients with TBM disease maintain normal kidney function throughout their lives.” 

I haven’t written about Gitelman Syndrome. Luckily, there’s NORD to help us out here: 

“Fundamentally, like Bartter’s syndrome, Gitelman syndrome is a salt wasting nephropathy. The symptoms and severity of the disorder can vary greatly from one person to another and can range from mild to severe. For unknown reasons, the onset of symptoms is frequently delayed until the second decade of life. Symptoms and severity can even vary among members of the same family. Common symptoms can include episodes of fatigue, muscle weakness, and muscle cramps sometimes accompanied by gastrointestinal problems such as abdominal pain, nausea and vomiting. Some individuals may need to urinate frequently and will pass a large volume of urine (polyuria).” 

I turned to an old reliable favorite, MedlinePlus for information about Lowe Syndrome: 

“Kidney (renal) abnormalities, most commonly a condition known as renal Fanconi syndrome, often develop in individuals with Lowe syndrome. The kidneys play an essential role in maintaining the right amounts of minerals, salts, water, and other substances in the body. In individuals with renal Fanconi syndrome, the kidneys are unable to reabsorb important nutrients into the bloodstream. Instead, the nutrients are excreted in the urine. These kidney problems lead to increased urination, dehydration, and abnormally acidic blood (metabolic acidosis). A loss of salts and nutrients may also impair growth and result in soft, bowed bones (hypophosphatemic rickets), especially in the legs. Progressive kidney problems in older children and adults with Lowe syndrome can lead to life-threatening renal failure and end-stage renal disease (ESRD).” 

Cystinosis sounded somewhat familiar, but then I thought perhaps it was because it starts with “cyst.” It turns out I was wrong, as the Cystinosis Foundation explains: 

“Cystinosis is the most common inherited cause of Fanconi syndrome, a renal tubular disease characterized by the inability of the kidneys to reabsorb electrolytes, amino acids, proteins and glucose from the urine. This leads to the loss of large volumes of urine, salts, minerals and nutrients. Laboratory testing may reveal severe electrolyte abnormalities, including low potassium (hypokalemia), low phosphorus (hypophosphatemia) and low bicarbonate (metabolic acidosis). Fanconi syndrome leads to growth failure, excessive thirst (polydipsia), excessive urination (polyuria), and soft bones (rickets). Treatment of Fanconi syndrome requires replacing lost electrolytes such as potassium, phosphorus and bicarbonate. 

Without treatment, children with cystinosis progress to end-stage kidney failure by an average age of 8-10 years. Even with treatment, many children develop kidney failure in adolescence. In the past, this meant death. Today patients can be treated with dialysis and kidney transplantation. Even with a transplant, however, the disease continues to affect every other organ in the body.” 

I think we have room for one more, so let’s look at Nephronophthisis. A site that is new to me, The Weizmann Institute of Science’s Malacards, explained succinctly: 

“It is characterized by inflammation and scarring (fibrosis) that impairs kidney function. These abnormalities lead to increased urine production (polyuria), excessive thirst (polydipsia), general weakness, and extreme tiredness (fatigue). In addition, affected individuals develop fluid-filled cysts in the kidneys, usually in an area known as the corticomedullary region. Another feature of nephronophthisis is a shortage of red blood cells, a condition known as anemia. Nephronophthisis eventually leads to end-stage renal disease (ESRD), a life-threatening failure of kidney function that occurs when the kidneys are no longer able to filter fluids and waste products from the body effectively. Nephronophthisis can be classified by the approximate age at which ESRD begins: around age 1 (infantile), around age 13 (juvenile), and around age 19 (adolescent).” 

I got so involved with these diseases, that I almost forgot about CKD. It turns out that it may run in families, just as hypertension and diabetes may. While hypertension runs in my family, diabetes runs in my children’s father’s family. That means, I’m sorry to say, that they are at considerable risk of CKD since hypertension and diabetes are the two main causes of CKD. Nuts! 

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! 

And Then There’s Living Donation

This week just flew by. I guess good news does that. The good news is that this blog is live on Spotify. Just download the free app and enter SlowItDownCKD in the search bar. There we are. Most of the blogs take about seven and a half minutes of listening time. We’re also live on Anchor, Google Podcasts, Pocket Casts, RadioPublic, and Copy RSS. The link is https://anchor.fm/slowitdownckd. Of course, the digital and print books are still available on Amazon.  

Sometimes, kidney transplants are live, too. [How do you like that easy transition to today’s topic?] What do I mean, exactly? I mean the kidney to be transplanted is from a living donor. There’s a separate set of guidelines about choosing a living donor’s kidney than there is for that of a deceased donor.  

By the way, my use of term ‘cadaver donor’ last week created quite a controversy, so I went to a newly discovered site for me, Gift of Life, to find acceptable terms. The one I should have used is ‘deceased.’ My sincerest apologies to those who I inadvertently offended. 

Back to the guidelines for living kidney donation. Let’s find out about them together. First, I’d like to know more about what living kidney donation is. The National Kidney Foundation, my constant favorite source of anything kidney, explains: 

“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.” 

Got it. I went to another trusted source, the American Kidney Fund, to find out a bit about what would qualify you to be a living kidney donor. 

“If you want to be a living donor, you will need to have a medical exam with blood tests to be sure you are healthy enough to donate a kidney. Some of the tests needed may include: 

Blood tests 

Urine tests 

Pap smear/ gynecological exam 

Colonoscopy (if over age 50) 

Screening tests for cancer 

Antibody test 

X-ray 

Electrocardiogram (EKG) which looks at your heart 

Other image testing like a CT scan 

You are also required to meet with a psychologist and an Independent Living Donor Advocate to be sure you are mentally and emotionally ready to donate one of your kidneys. 

If you are found to be healthy, and your antibodies and blood type are well-matched to the person getting your kidney, you may be approved to donate your kidney.” 

Who better than the Living Kidney Donors Network to explain why a living kidney donation is preferred over a deceased kidney donation. 

“Kidney transplants save and improve the lives of people with kidney failure. Kidney donation from deceased donors has not been able to keep up with the need for kidney transplants. Over 5,000 people die every year waiting for a kidney transplant.  
Living kidney donation has revolutionized kidney transplantation and is now preferred when compared to a deceased donor transplant. Several benefits and advantages of living donation are now recognized:  

  • Living donation eliminates the recipient’s need for placement on the national waiting list. 
  • Short and long term survival rates are significantly better for transplants from living donors than transplants from deceased donors. (On average, approximately 18 years for a kidney from a living donor compared to 13 years for a kidney from a deceased donor). 
  • The recipients knows the donor, his/her lifestyle choices and medical history 
  • Living donor kidneys almost always start functioning immediately, whereas deceased donor kidneys can take from a few days to a few weeks to start functioning. (Often called a Sleepy Kidney) 
  • Shortens the waiting time for others on the waiting list. 
  • Health deteriorates the longer someone remains on dialysis. 
  • A kidney transplant doubles the life expectancy compared to staying on kidney dialysis treatment. 
  • May be able to avoid being on dialysis 
  • The recipient has time to plan for the transplant 
  • Waiting for a deceased donor can be very stressful and unhealthy. 
  • The surgery can be scheduled at a mutually-agreed upon time rather than performed on an emergency basis. 

Perhaps the most important aspect of living donation is the psychological benefit. The recipient can experience positive feelings knowing that the gift came from a loved one or a caring stranger. The donor experiences the satisfaction of knowing that he or she has contributed to the improved health of the recipient.” 

I wasn’t sure about antibodies although I know what they are and have heard of them in relation to living kidney donors. Johns Hopkins, another source I often turn to, had an explanation I could understand.  

“To test a recipient for these antibodies, a sample of their blood is mixed with a sample of the potential donor’s blood. This test is called a ‘crossmatch,’ and shows how a recipient’s antibodies react with the potential donor’s. Test results can be either positive or negative. It may seem confusing at first, but a positive crossmatch means that a donor and recipient are not compatible. 

A positive crossmatch results in the recipient’s antibodies attacking the donor’s which means the kidney is not suitable for transplant. 

A negative crossmatch means that the recipient’s antibodies do not attack the donor’s which means the kidney is suitable for transplant…. 

If a donor and recipient are not compatible, a transplant can still be performed. Experts at the Johns Hopkins Comprehensive Transplant Center developed a method call plasmapheresis, which helps make a kidney more compatible for a recipient and significantly affects survival outcomes.” 

As you can see from today’s blog, this is a complex matter. We have only touched upon what needs to be involved with a living donor kidney transplant. To further complicate matters, there are two distinct kinds of living donor kidney transplants as UNOS, the site of the United Network for Organ Sharing, tells us: 

“Directed donation 

In a directed donation, the donor names the specific person to receive the transplant. This is the most common type of living donation. The donor may be: 

a biological relative, such as a parent, brother, sister or adult child, 

a biologically unrelated person who has a personal or social connection with the transplant candidate, such as a spouse or significant other, a friend or a coworker, or 

a biologically unrelated person who has heard about the transplant candidate’s need. 

If tests reveal that the donor would not be a good medical match, paired donation may be an option. 

Paired donation 

Sometimes a transplant candidate has someone who wants to donate a kidney to them, but tests reveal that the kidney would not be a good medical match. Kidney paired donation, or KPD, also called kidney exchange, gives that transplant candidate another option. In KPD, living donor kidneys are swapped so each recipient receives a compatible transplant. 

For example, in the diagram above, Barbara wants to donate to her sister Donna, but they do not have matching blood types. Carlos wants to donate to his wife Maria, but they are also not compatible. By ‘swapping’ donors so that Carlos matches Donna and Barbara matches Maria, two transplants are made possible. This type of exchange often involves multiple living kidney donor/transplant candidate pairs.” 

 While today’s blog is longer than usual, there’s still more information we need to know about kidney transplants. There are now 90,872 people [about the seating capacity of the Los Angeles Memorial Coliseum] in the United States awaiting a kidney transplant. That is an astounding number. National Donate Life Month is turning out to be a learning experience for me as well as you. 

Until next week, 

Keep living your life! 

Dying is Not the End

Unbeknownst to me until I started researching kidney transplant, there is a National Donor Day. According to DonateLife

“Observed every year on February 14th, National Donor Day is an observance dedicated to spreading awareness and education about organ, eye and tissue donation. By educating and sharing the Donate Life message, we can each take small steps every day to help save and heal more lives, and honor the donor’s legacy of generosity and compassion. National Donor Day is a time to focus on all types of donation—organ, eye, tissue, blood, platelets and marrow. Join us by participating in local events, sharing social media messages and encouraging others to register as donors. 

National Donor Day is also a day to recognize those who have given and received the gift of life through organ, eye and tissue donation, are currently waiting for a lifesaving transplant, and those who died waiting because an organ was not donated in time.” 

I would suspect it’s no accident that this is celebrated on Valentine’s Day. 

On to cadaver donor, as promised last week. I’ve been perusing kidney transplant social media sites this past week and found lots of questions by those considering, and meeting the conditions for, a kidney transplant. A number of them wanted to know the difference between a cadaver transplant and a living donor transplant. It’s not as obvious as you might think. 

A cadaver transplant comes from a cadaver, or dead body, as you’ve probably figured out. Sometimes it’s called a deceased or non-living donor transplant. But what are the guidelines for which kidneys are useable and which are not?  Let’s see if the Donor Alliance can help us out with some general background information. 

“Kidney allocation is heavily influenced by waiting time, or how long the recipient has been listed for transplant. Fortunately there is a bridge treatment for many in end-stage renal disease, called dialysis, which allows candidates to survive while awaiting a transplant. In addition, blood type and other biological factors, as well as body size of the donor and recipient are always key factors. Medical urgency and location are also factors but less so than other organs as they [sic] kidney can remain viable outside the body for 24-36 hours under the proper conditions. 

The waiting list is not simply a list of people who are eligible for transplant. It’s a dynamic, complex algorithm based on carefully developed policy that ensures scarce organs are allocated to recipients as fairly and accurately as possible within highly constricted time frames.” 

Okay, so one guideline for a cadaver kidney is that it can remain alive outside the body for 24-36 hours. That seems to indicate, as mentioned above, that the location of both the donor and recipient are important, even though that’s fairly long for cadaver organs. 

I was surprised to learn that there are different types of deceased donor transplants.  

“A deceased donor is an individual who has recently passed away of causes not affecting the organ intended for transplant. Deceased donor organs usually come from people who have decided to donate their organs before death by signing organ donor cards. Permission for donation also may be given by the deceased person’s family at the time of death. 

A deceased donor kidney transplant occurs when a kidney is taken from a deceased donor and is surgically transplanted into the body of a recipient whose natural kidneys are diseased or not functioning properly. 

Types of Deceased Donor Organs 

There are several different types of deceased donor kidneys. These names are used to describe certain anatomic, biological, and social features of the donor organs. You may decide not to receive any or all of these organs, and you may change your mind at any time. 

Standard Criteria Donors (SCD): These kidneys are from donors under age 50 and do not meet any of the criteria below that are assigned to Expanded Criteria Donors. 

Expanded Criteria Donors (ECD): These organs come from donors over age 60 or age 50-59 that also have at least two of the following criteria – history of high blood pressure, the donor passed away from a CVA (stroke) or had a creatinine higher than the normal laboratory value (1.5 mg/dl). About 15-20% of the donors in the United States are Expanded Criteria. 

Donation after Cardiac Death (DCD): These donors do not meet the standard criteria for brain death. Their hearts stopped before the organs were removed. Donation after Cardiac Death occurs when continuing medical care is futile, and the donor patient is to be removed from all medical life-sustaining measures/supports. 

Double Kidney Transplants (Duals): During the year we may have access to donors that are at the more extreme limit of the Expanded Criteria Donor. Research has found that using both of these kidneys in one recipient is preferable to only one. 

Donors with High-Risk Social Behavior: These donors are individuals who at some point in their life practiced high-risk behavior for sexually transmitted disease, drug use, or were incarcerated. All of these donors are tested for transmissible disease at the time of organ recovery. You will be informed of the high-risk behavior. 

All of these kidneys supply suitable organs for transplant, and all are expected to provide good outcomes with good organ function. However, the outcomes may be 5-10% less than that achieved with Standard Criteria organs. Accepting a kidney that is not considered Standard Criteria may substantially reduce your waiting time.” 

Thank you to one of my favorite sources, the Cleveland Clinic for this information. 

While this is not all the information available about deceased kidney donors, I think it’s important to know how to register to be a donor. I registered when I had my first child. Her birth had gotten me to thinking about helping others. 

The Health Resources and Service Administration’s OrganDonor.gov provides the easiest two ways: 

“Signing up on your state registry means that someday you could save lives as a donor—by leaving behind the gift of life. When you register, most states let you choose what organs and tissues you want to donate, and you can update your status at any time.” 

There is a download for your state on their site. The other way is: 

“…in-person at your local motor vehicle department.” 

You know which I hope you choose in the time of Covid. 

I chose to donate my body to science. MedCure is the organization that clinched my decision for me. 

“Everything we know about the human body comes from studying whole body donors. At MedCure, we connect you or your loved ones to the physicians, surgeons, and researchers who are continuing this vital work. Their discoveries and innovations help people live longer, make treatments less invasive, and create new ways to prevent illness or disease. 

We are constantly overwhelmed by the incredible generosity and selflessness of our donors.  MedCure honors their gifts by covering, upon acceptance, all expenses related to the donation process. These costs include transportation from the place of passing, cremation, and a certified copy of the death certificate, as well as the return of cremated remains to the family or a scattering of the ashes at sea. By request, we can provide a family letter that shares more detailed information on how you or your loved one contributed to medical science.” 

Whichever you chose, thank you for saving lives one way or another. 

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 DISEASESAnti-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
DIABETESDiabetes: 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 KIDNEYSPolycystic Kidneys
HYPERTENSIVE NEPHROSCLEROSISHypertensive Nephrosclerosis
RENOVASCULAR AND OTHER VASCULAR DISEASESChronic Nephrosclerosis: Unspecified; Malignant Hypertension; Polyarteritis; Progressive Systemic Sclerosis; Renal Artery Thrombosis; Scleroderma
CONGENITAL, RARE FAMILIAL, AND METABOLIC DISORDERSCongenital Obstructive Uropathy; Cystinosis; Fabry’s Disease; Hypoplasia/Dysplasia/Dysgenesis/Agenesis; Medullary Cystic Disease; Nephrophthisis; Prune Belly Syndrome
TUBULAR AND INTERSTITIAL DISEASESAcquired 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
NEOPLASMSIncidental Carcinoma; Lymphoma; Myeloma; Renal Cell Carcinoma; Wilms’ Tumor
RETRANSPLANT/GRAFT FAILURERetransplant/Graft Failure
OTHEROther 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! 

Almost the End of National Kidney Month 

Today we have the fifth National Kidney Month blog. You know, it’s also National Women’s Month. What better way to celebrate both than to write about women in nephrology?  I had intended to complete multiple searches for this information, but it looks like Martín-Gómez MA, García Agudo R, and Arenas Jiménez MD beat me to it with their paper El papel de la mujer a lo largo de la historia de la Nefrología which appeared in Nefrologia. 2019;39:15–17.  

In English rather than its original Spanish, the title is The role of women throughout the history of Nephrology. As a woman and a Chronic Kidney Disease writer, I owe them a huge debt of gratitude. Here are the parts of their paper pertaining to individual women in nephrology: 

“Dr Josephine Briggs, responsible for research at the US National Institutes of Health in the 1990s on the renin-angiotensin system, diabetic nephropathy, blood pressure and the effect of antioxidants in kidney disease. 

Dr Renée Habib (France), a pioneer of nephropathology [Gail here: that means disease or damage of the kidneys.] in Europe. She worked with the founders of the ISN to establish nephrology as a speciality. 

Dr Vidya N Acharya, the first female nephrologist in India inspiring the study of kidney diseases, dedicating her research to urinary infections and heading a Nephrology department in Mumbai. 

Dr Hai Yan Wang, head of department and professor of Nephrology at the Peking University First Hospital since 1983, president of the Chinese Society of Nephrology and editor of Chinese and international nephrology journals. 

Dr Mona Al-Rukhaimi, co-president of the ISN and leader of the working group on the KDIGO guidelines in the Middle East, as well as a participant in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism. 

Dr Saraladevi Naicker, who created the first training programme [sic]for nephrologists in Africa and the Kidney Transplant Unit at Addington Hospital. 

Dr Batya Kristal, the first woman to lead a Nephrology department in Israel and founder of Israel’s National Kidney Foundation. She conducts her current research in the field of oxidative stress and inflammation. 

Dr Priscilla Kincaid-Smith, head of Nephrology at Melbourne Hospital, where she promoted the relationship between hypertension and the kidney and analgesic nephropathy. The first and only female president of the ISN, she empowered many other women, including the nephrologist Judy Whitworth, chair of the World Health Organization committee…. 

Dr M. Teresa D’Ocón Asensi, the first female head of the Nephrology Department at the Hospital San Carlos in Madrid since it was founded in 1962 and designer of a conservative prosthesis of the peritoneal catheter tract based on urological plugs. She was the only female member of the board of directors of the SEN (Sociedad Española de Nefrología [Spanish Society of Nephrology]) since its formation in 1964, until 1976.  

Women were not represented again in the management of the Spanish society until 1987, with the figure of Dr M. Dolores Jarillo Ibáñez (1987–1993)…. 

Dr María Teresa González, creator of the first nephrology and diabetes clinic at the Hospital de Bellvitge, in 1978. 

Dr Dolores Prats, who promoted peritoneal dialysis and studies on permeability and duration of the peritoneal membrane at the Hospital Clínico in Madrid. She succeeded her female predecessor as head of department, following said predecessor’s death in 1981. 

Dr Ana Gonzalo Fondona, who performed the first studies on complement activation in glomerulopathies at the Hospital de Bellvitge…. 

Isabel Entero, creator of the Fundación Renal Íñigo Álvarez de Toledo, founder of ALCER (Asociación para la Lucha Contra las Enfermedades de Riñón [Spanish Association for the Fight Against Kidney Diseases]) in 1976 and participant in the Transplant Act in 1979 

Dr Blanca Miranda, who replaced Isabel Entero as director of said Foundation from 1982, formed part of the drafting committee of the journal Nefrología from 1995 and coordinator of the Spanish National Transplant Organisation between 1996 and 2004. 

The journal Nefrología, which was created in 1981 by Dr Luis Hernando, did not include women on the editorial board until 1989: Dr Nieves Gallego, Dr Emma Huarte and Dr Dolores Jarillo….” 

You’ll notice the paper was printed in the beginning of 2019, so I decided to add more current women in nephrology. 

Dr. Vanessa Grubb first approached me when she was considering writing a blog herself. I believe she’s an important woman nephrologist since she has a special interest in the experiences of Black kidney patients. Here is what University of California’s Department of Medicine’s Center for Vulnerable Populations lists for her: 

“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.” 

I think Dr. Li-li Hsiao should also be included in today’s blog since she has a special interest in the Asian community and their experiences with kidney disease. The following is from the Boston Taiwanese Biotechnological Association:  

“…. She is the Director of Asian Renal Clinic at BWH; the co-program director and Co-PI of Harvard Summer Research Program in Kidney Medicine. She is recently appointed as the Director of Global Kidney Health Innovation Center. Dr Hsiao’s areas of research include cardiovascular complications in patients with chronic kidney disease; one of her work published in Circulation in 2012 has been ranked at the top 1% most cited article in the Clinical Medicine since 2013. Dr. Hsiao has received numerous awards for her outstanding clinical work, teaching and mentoring of students including Starfish Award recognizing her effective clinical care, and the prestigious Clifford Barger Mentor Award at HMS. Dr. Hsiao is the founder of Kidney Disease Screening and Awareness Program (KDSAP) at Harvard College where she has served as the official advisor. KDSAP has expanded beyond Harvard campus. Dr. Hsiao served in the admission committee of HMS; a committee member of Post Graduate Education and the board of advisor of American Society of Nephrology (ASN). She was Co-Chair for the ‘Professional Development Seminar’ course during the ASN week, and currently, she is the past-president of WIN (Women In Neprology [sic]).   

I don’t believe we, as women, will continue to be underrepresented in the nephrology community for very much longer. 

Until next week, 

Keep living your life! 

SLOWITDOWNCKD News

Digitally available on Amazon today! Print copy coming soon. So glad I was able to get this out during National Kidney Month!!!

Published in: on March 22, 2021 at 5:07 pm  Leave a Comment  

What’s New?

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

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

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

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

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

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

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

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

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

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

According to the same agency

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

National Kidney Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  1. Meet regularly with your health care team. Staying connected with your doctor, whether in-person or using telehealth via phone or computer, can help you maintain your kidney health. 
  1. Manage blood pressure and monitor blood glucose levels. Work with your health care team to develop a plan to meet your blood pressure goals and check your blood glucose level regularly if you have diabetes. 
  1. Take medicine as prescribed and avoid NSAIDs like ibuprofen and naproxen. Your pharmacist and doctor need to know about all the medicines you take. 
  1. Aim for a healthy weight. Create a healthy meal plan and consider working with your doctor to develop a weight-loss plan that works for you. 
  1. Reduce stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day. 
  1. Make time for sleep. Aim for 7 to 8 hours of sleep per night. 
  1. Quit smoking. If you smoke, take steps to quit. 

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

Learn more about managing kidney disease 

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

Until next week, 

Keep living your life! 

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 DiseaseSlowItDownCKD 2011SlowItDownCKD 2012

SlowItDownCKD 2013SlowItDownCKD 2014SlowItDownCKD 2015;

 SlowItDownCKD 2016SlowItDownCKD 2017

SlowItDownCKD 2018SlowItDownCKD 2019the 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! 

Black History Month: Entertainers I Miss

This is the last week of Black History Month and I’d like to honor that. I’ve previously written about Blacks in the history of nephrology and other paths in life. Being a former actor and just having had a visit from a member of my acting community (a safe visit: double masked, hand sanitized, and social distanced.), I got to thinking about Blacks in entertainment who died of kidney disease.  

But first, this is what I included in the upcoming SlowItDownCKD 2020 to explain what Black History Month actually is: 

“As Andrea Wurtzburger wrote in People Magazine (I knew there was a reason I grabbed this first each time I waited in one medical office or another.) in the February 13, 2020… 

‘Black History Month is an entire month devoted to putting a spotlight on African Americans who have made contributions to our country. Originally, it was seen as a way of teaching students and young people about the contributions of Black and African Americans in school, as they had (and still have) been often forgotten or left out of the narrative of the growth of America. Now, it is seen as a celebration of those who’ve impacted not just the country, but the world with their activism and achievements.’” 

Now keep in mind that the further back we go, the more people there are that died of kidney disease since treatment was non-existent at first and then limited. Nephrology is a relatively young field of medicine. According to NEJM Resident 360, a nephrology journal for medical students, 

“The initial recognition of kidney disease as independent from other medical conditions is widely attributed to Richard Bright’s 1827 book ‘Reports of Medical Cases,’ which detailed the features and consequences of kidney disease. For the next 100 years or so, the term ‘Bright’s disease’ was used to refer to any type of kidney disease. Bright’s findings led to the widespread practice of testing urine for protein — one of the first diagnostic tests in medicine. 

The study of kidney disease was furthered by William Howship Dickinson’s description of acute nephritis in 1875 and Frederick Akbar Mahomed’s discovery of the link between kidney disease and hypertension in the 1870s. Mahomed’s original sphygmograph, created when he was a medical student, was improved in 1896 by Scipione Riva-Rocci, of Italy, with the use of a cuff to encircle the arm….” 

I’m listening to Art Tatum’s (10/13/09 – 11/5/56) music as I write today’s blog. According to National Public Radio (NPR): 

“One of the greatest improvisers in jazz history, Art Tatum also set the standard for technical dexterity with his classic 1933 recording of ‘Tea for Two.’ Nearly blind, Tatum had artistic vision and ability that made him an icon of jazz piano, a musician whose impact will be felt for generations to come…. 

Although his excessive drinking didn’t affect his playing, it did unfortunately affect his health. Tatum began showing evidence of euremia, a toxic blood condition resulting from a severe kidney disease. On Nov. 5, 1956, Tatum died at age 47, and although his career was relatively short, Tatum’s brilliant playing remains unparalleled and highly influential.” 

As far as I can tell, ‘euremia’ is either an alternative or misspelling of uremia. I could not find it despite multiple sources. Each one reverted to ‘uremia’. 

Have you heard of Ivan Dixon? No? How about the tv series ‘Hogan’s Heroes’? Encyclopedia.com organizes their information a bit differently: 

“Career: Stage, television, and screen actor, 1957-91; film and television director, 1970-93. 

Memberships: Academy of Motion Picture Arts and Sciences; Directors Guild of America; Negro Actors for Action; Screen Actors Guild. 

Awards: Emmy Award nomination, 1967, for The Final War of Olly Winter; received four National Association for the Advancement of Colored People Image Awards; Black Filmmakers Hall of Fame; National Black Theatre Award; Paul Robeson Pioneer Award, Black American Cinema Society. 

For his achievements on the stage and screen, Dixon was inducted into the Black Filmmakers Hall of Fame. He was the recipient of four National Association for the Advancement of Colored People Image Awards, in addition to the National Black Theatre Award and the Paul Robeson Pioneer Award given by the Black American Cinema Society.” 

He died of complications from kidney failure. There seems to be no record of what these complications were, although we can guess. 

Barry White (9/12/44 – 7/4/03), a singer and songwriter whose voice I will always miss, died of a stroke while awaiting a transplant. His kidney disease had been caused by hypertension.  The following is from Biography.com, which has much more information about him. 

“…. Love Unlimited’s success in 1972 can in large part be attributed to White’s throaty vocals in such hits as “Walkin’ In The Rain With The One I Love.” The group’s success rejuvenated White’s own career, receiving acclaim for such songs as “I’m Gonna Love You Just A Little More Baby” and “Never, Never Gonna Give Ya Up” in 1973 and “Can’t Get Enough Of Your Love, Babe” and “You’re The First, The Last, My Everything” in 1974…. 

During the peak of his career, White earned gold and platinum discs for worldwide sales. The UK singer Lisa Stansfield has often publicly supported White’s work and in 1992, she and White re-recorded a version of Stansfield’s hit, “All Around The World.” During the ’90s, a series of commercially successful albums proved White’s status as more than just a cult figure….” 

To be honest, the only way I could have enjoyed writing this blog more is if these talented people were still with us. 

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!