Women in Nephrology

You know, in addition to being National Kidney Month, March is also National Woman’s Month. Once again, I decided to combine the two and write about women in nephrology. Nefrologia [English edition] started us off with names you may or may not recognize:

“ Internationally, in an attempt to highlight the work of women in the scientific field, the International Society of Nephrology (ISN) wanted to pay tribute to women who had collaborated closely in the development of the specialty…

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 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 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.”

I turned to BMC Nephrology to learn a bit about another woman in nephrology, Dr. Natalia Tomilina. This is from an interview with Dr. Tomilina:

“For me specializing in nephrology happened by chance. After graduating from university, I worked as a general practitioner, and very soon realized that I needed something more than just routine clinical practice; I needed to grow professionally. In 1962–1963 the hospital where I worked introduced a nephrology program. It was not yet a nephrology unit, just 20 beds on the internal medicine floor for patients with kidney diseases. At the time, nephrology as a specialty was only starting to be recognized both in the Soviet Union and in other countries. I was lucky to have met Professor Maria Ratner, who invited me to work with her. I could have moved to the hospital’s research institute, but it seemed to be less interesting, so I chose nephrology and Professor Ratner became my mentor. I found it fascinating, and I have continued to be fascinated by nephrology all my life….”

More recently, as I wrote in March 29’s 2021 blog:

“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.’ [Gail here: Dr. Grubbs writes the blog, The Nephrologist; has the YouTube channel, Real Kidney Talk with The People’s Nephrologist; and is an advocate with her Black Doc Village.]

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])’”

Just in case you wondered, Zippia [billed as the job experts] showed 47.37% of nephrologists were female as of 2021. And, yes, they did earn less than their male counterparts: 88 cents to the male’s dollar. From all the different sites I looked at, there is still a pay gap between the two genders. All I have to say about that is, “Huh? This IS 2024, isn’t it?”

Until next week,

Keep living your life!

Happy New Year!

Here’s hoping you enjoyed your Christmas, Kwanzaa, and/or Boxing Day. I’m sure there are some other holidays that were celebrated which I missed. I hope you enjoyed them, too. We were thrilled, as usual, to have our Arizona kids with us. Nothing like children to make a holiday festive. And now it’s a new year and we begin all over again. To help you with that, my new year’s gift to you is that What is It and How did I Get It? Early Stage Chronic Kidney Disease is free on Amazon all day today.

A young friend of mine said she doesn’t want a new her this year [You know: new year, new me.] but to better love the her she already has. I’m with this young friend. However, I wouldn’t mind some new help for chronic kidney disease. Let’s see if there is any.

Jardiance is a term I’ve heard often, but I don’t really know much about it.  Boehringer Ingelheim, tells us:

“JARDIANCE is a prescription medicine used to:

• reduce the risk of cardiovascular death and hospitalization for heart failure in adults with heart failure, when the heart cannot pump enough blood to the rest of your body
• reduce the risk of further worsening of kidney disease, end-stage kidney disease (ESKD), death due to cardiovascular disease, and hospitalization in adults with chronic kidney disease
• reduce the risk of cardiovascular death in adults with type 2 diabetes who also have known cardiovascular disease
• lower blood sugar along with diet and exercise in adults and children who are 10 years of age and older with type 2 diabetes”

Boehringer Ingelheim is self-described as “… the privately-held company [that] has been committed to researching, developing, manufacturing and marketing novel treatments for human and veterinary medicine.”

Jardiance is one of the flozins I wrote about on 8/23/21. Here, let me remind you what was written:

“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.” 

Hmm, that was back in 2021. So, what’s new about Jardiance? PR News Wire answered that question for us in June of this past year:

“The U.S. Food and Drug Administration (FDA) has approved Jardiance^® (empagliflozin) 10 mg and 25 mg tablets to lower blood sugar along with diet and exercise in children 10 years and older with type 2 diabetes, Boehringer Ingelheim and Eli Lilly and Company (NYSE: LLY) announced….

‘As the burden of type 2 diabetes increases among young people, so does the need for additional treatment options with proven clinical benefits,’ said Lennart Jungersten, M.D., Ph.D., senior vice president, Medicine & Regulatory Affairs, Boehringer Ingelheim. ‘This FDA approval, which is based on the efficacy results and safety data from the DINAMO trial, marks an important milestone in helping address a clear unmet need for oral treatment options, in addition to metformin, to lower A1c in this rapidly rising population.’

Type 2 diabetes represents a significant and growing health concern among young people in the U.S. Over the past two decades, the prevalence of type 2 diabetes in people aged 10-19 has nearly doubled. New treatment options are critical to help address the over 5,700 new cases of type 2 diabetes in this population each year in the U.S.”

This is why the FDA approval is so important:

“Empagliflozin is the first and only SGLT2 inhibitor approved for this patient population
– More than 5,700 young people are diagnosed with type 2 diabetes annually in the U.S.”

Keep in mind that diabetes is the foremost cause of chronic kidney disease. Also, CKD can cause heart disease.

The Mayo Clinic is metaphorically tugging on my pants leg now. Let’s see what that’s all about. This is from March 2023:

“Dr. Naim Issa, a Mayo Clinic transplant nephrologist says there is a class of medications to help people with chronic kidney disease ….

Most people don’t have symptoms of chronic kidney disease until it’s at an advanced stage.

‘Early detection of chronic kidney disease may help us actually treat and prevent patients ahead of time before the need for dialysis or kidney transplantation,’ says Dr. Issa.

He says a new class of drugs, SGLT2 inhibitors, is being called a game changer. The drugs were originally designed to treat diabetes — a main cause of chronic kidney disease.

Medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin and empagliflozin.

‘In large trials, we observed groundbreaking success with those medications in slowing down the progression of chronic kidney disease, to the extent of avoiding dialysis and the need for kidney transplantation,’ Dr. Issa says.

The medications are used whether the patient is diabetic or not.

‘They are actually game-changer medications that help us prevent the progression of chronic kidney disease,’ says Dr. Issa.”

What an encouraging way to start the new year. Here’s to even more new help for CKD.

Until next week,

Keep living your life!

Finding A Living Donor

Leesa Thompson, a Facebook friend from the kidney community, mentioned she was a kidney coach. I wasn’t sure what kidney coaches did. So, I asked her to write a guest blog. This is Leesa’s blog.  

If you’re like me, when your doctor said you either needed dialysis or a kidney transplant, it was overwhelming. I remember this conversation all too clearly. I cried, had some lunch and a drink, then cried some more. I was scared and upset knowing that I would have to do something incredibly difficult – at least for me – which was to ask for help. If I wanted to live a normal life not attached to a dialysis machine, I would need someone else’s kidney. How do you ask someone for that?  

Today, after having received a living donor kidney transplant, and having successfully coached many other patients in need, I can tell you there’s a powerful strategy that transplant centers don’t tell you. You don’t have to ask someone to be your living donor.  

Say what? 

I didn’t ask anyone to be my donor. Instead, I shared my story and need as far and wide as possible. My story included four basic sections:  

• Who am I?  
• What are my interests?  
• What happened to me?  
• How would a kidney transplant affect my life? 

I built a simple website and shared it on Facebook. Within six weeks, I received over 32,600 views. My swap donor came forward.  [According to the University of Michigan’s Transplant Center, “A paired kidney exchange, also known as a ‘kidney swap’ occurs when a living kidney donor is incompatible with their recipient, but does match another person on the waitlist.  Two live donor transplants would occur.”] 

We often think of living donation as a huge sacrifice. I would say that it certainly is! But interestingly, most living donors say that the experience was deeply enriching for them.  Simply put, there are many special people out there who more than embrace the altruism of saving a life.  

The question is — how do you reach thousands of people to let them know about your need? 

Believe it or not there are many organizations that have templated “Microsites,” dedicated to giving kidney patients a voice online to share their story. [Oxford Language Dictionary defines microsite as “an auxiliary website with independent links and address that is accessed mainly from a larger site.”] 

My favorite is The Great Social Experiment. This started off as an incredibly fascinating and riveting podcast documentary series which is an absolute must listen for anyone with ESRD [end stage renal disease.].  After releasing the series, the creator David Krissman created a Microsite tool which gives patients their own webpage to tell their story and has all their relevant information in one place. Why do I like this one the best?  

1. It’s completely free. 

2. The design is simple and informative. 

3. It’s the first one I’ve seen that’s video compatible!   

4. Every person who registers gets up to five free t-shirts, which will automatically be shipped to you. 

5. You’ll receive a QR code via email which you can use on billboards, yard sides, and business cards.  

6. David Krissman created a very informative video on how to tell your story.  

Regardless of how you create your web presence, the important thing is to share it. A website on its own will not garner traffic. Assemble a team of advocates (close friends and family) that will share your site far and wide. Don’t stop sharing until you find your donor.  

For me, it didn’t happen immediately. But, as mentioned earlier, in six weeks I received over 32,600 views and my swap donor came forward. He wasn’t a match, but the transplant center helped us become part of a chain and I received my kidney.  

People often ask how I found my donor so quickly. I used lots of creative ideas that people often don’t think of. I had newspaper articles and an alumni spotlight written, participated in podcasts, tv spots, did an email blast, sat at event tables, and used social media to name a few. Many people host awareness events and participate in local events during which they carry signs with their info.  

The best strategy was word of mouth. Any time that someone asked how I was, I told them my elevator pitch [extremely short introduction making a part or two and a connection]. It seemed that for six weeks I talked about my need for a kidney every time I had the opportunity. All these methods led me to finding my kidney very quickly. I’d like to help you to do the same for finding yours. 

In the past two years, I’ve coached numerous patients who have received a living donor kidney. My clients seem to struggle with the steps needed to build their site themselves. They need help with writing and telling their story.  

To this end we formed Kidney Stories Toastmasters, Kidney Stories Toastmasters Club #7979708 (toastmastersclubs.org), which just celebrated its first birthday. Toastmasters is the perfect place to learn the public speaking and advocacy skills needed to develop and share your story. We have meetings on the 1^st and 3^rd Sunday night of the month. Our members include a wide variety of people from the kidney community including professionals, advocates, caregivers, patients, recipients, and donors.  

At each meeting, we have a featured speaker that tells their personal kidney story of hope and inspiration. We give each person an opportunity to update the group on their challenges and accomplishments. We share strategies for finding your living donor.  

For many people suffering with CKD which has ultimately led to ESRD, a living kidney transplant is often your best treatment option. A deceased donor requires a longer wait time and doesn’t offer the longevity that a living kidney offers. Finding a living kidney may seem difficult but it is not impossible. With tools such as TGSE and a good kidney coach, you should be able to find your living kidney donor and be back to living your best life in the shortest time possible. If I can be of further help, I’m here for you.  

Thanks, Leesa. Although I’m not in that position, I think if I were looking for a kidney, I would both contact Leesa and join this particular Toastmasters group. 

Until next week, 

Keep living your life! 

Talk about Variations!

Happy New Year to one and all. Here’s hoping this new year is better to us medically than the last three years have been. I’m referring to Covid, the flu, and RSV. Our New Year’s Eve was the usual one of comforting poor Shiloh, our big, white, fluffy dog, who is terrified by the sound of gunshots, as well as the sound of the fireworks. We live in Arizona. There is horse property behind the house and an arroyo only a quarter of a mile away. Both seemed to be used for shooting off the guns. Fireworks show up on our street.  

The funny thing is that the turning of the year got me to thinking about hepatitis C. Why? I have no clue. Hmm, maybe it was reading Kidney Disease: Improving Global Outcomes (KDIGO) 2022, particularly this statement: 

“Hepatitis C virus (HCV) infection in the chronic kidney disease (CKD) population has presented some unique challenges. These include its high prevalence among dialysis patients, transmission within dialysis units and by infected grafts, and the resultant increased risk of progressive liver disease in chronically infected patients who remain on dialysis, as well as in kidney transplant recipients.” 

I thought about it and decided I needed more information. I’m sure it was included in the KDIGO publication, but that’s basically for doctors, so I needed something more lay person based. I started with the definition of Hepatitis C, courtesy of WebMD: 

“Hepatitis C is a liver infection that can lead to serious liver damage. It’s caused by the hepatitis C virus. About 2.4 million people in the U.S. have the disease. But it causes few symptoms, so most of them don’t know. The virus spreads through an infected person’s blood or body fluids. 

There are many forms of the hepatitis C virus, or HCV. The most common in the U.S. is type 1. None is more serious than any other, but they respond differently to treatment.” 

Uh, did they forget to mention it affects the kidneys? The American Kidney Fund didn’t, however: 

“Hepatitis C is connected to CKD because: 

Hepatitis C can cause a type of kidney disease called glomerulonephritis. Your kidneys are made up of thousands of tiny filters called glomeruli. Glomerulonephritis is the inflammation (swelling) of the kidney filters (glomeruli), which causes permanent damage. When your kidney filters are damaged, this can lead to CKD. 

When you have hepatitis C, you have a higher chance of getting diabetes. Diabetes is the leading cause of kidney disease and kidney failure.” 

Let’s get some definitions now. I turned to my favorite dictionary of all time [Are you tired of hearing that?], The Merriam-Webster Dictionary for help: 

“acute or chronic nephritis that involves inflammation of the capillaries of the renal glomeruli, has various causes (such as streptococcal infection, lupus, or vasculitis) or may be of unknown cause, and is marked especially by blood or protein in the urine and by edema, and if untreated may lead to kidney failure” 

Nice, that gives us some more information. Now I know you probably know what diabetes is, but this definition from the same dictionary is not quite what I expected, although it makes sense: 

“any of various abnormal conditions characterized by the secretion and excretion of excessive amounts of urine” 

Well, what should we do about hepatitis C? That’s a rough one, since there are different types of hepatitis C. The Mayo Clinic explains: 

“Hepatitis C infection is caused by the hepatitis C virus (HCV). The infection spreads when blood contaminated with the virus enters the bloodstream of an uninfected person. 

Globally, HCV exists in several distinct forms, known as genotypes. Seven distinct HCV genotypes and more than 67 subtypes have been identified. The most common HCV genotype in the United States is type 1. 

Although chronic hepatitis C follows a similar course regardless of the genotype of the infecting virus, treatment recommendations vary depending on viral genotype.” 

We also need to keep in mind that there are different stages of CKD [including ESRD]. In addition, both transplant and dialysis have to be taken into account when treating a kidney disease patient who also has hepatitis C. 

It seems to me that there should be symptoms, although many people aren’t aware they have hepatitis C. I found that confusing until I took a look at PennMedicine’s site.  

“Most people who are recently infected with HCV do not have symptoms. Some people have yellowing of the skin (jaundice). Chronic infection often causes no symptoms. But fatigue, depression and other problems can occur. 

Persons who have long-term (chronic) infection often have no symptoms until their liver becomes scarred (cirrhosis). Most people with this condition are ill and have many health problems. 

The following symptoms may occur with HCV infection: 

• Pain in the right upper abdomen 
• Abdominal swelling due to fluid (ascites) 
• Clay-colored or pale stools 
• Dark urine 
• Fatigue 
• Fever 
• Itching 
• Jaundice 
• Loss of appetite 
• Nausea and vomiting” 

This all sounds terribly intricate. Probably because it is. Between the different kinds and stages of kidney disease and the different types of hepatitis C, precision medicine is needed. But, it is not a hopeless medical condition to have. In fact, some types of hepatitis C will eventually cure themselves. 

I liked the easily understood [and comforting] information about this from NHSInform: 

“Hepatitis C can be treated with a single, or combination of, medicines that stop the virus multiplying inside the body….  New, all-oral medicines are now available for everyone and treatment is usually only for 8-12 weeks. 

Using these latest medications, around 95% or more of people with hepatitis C will be cured. However, it’s important to be aware that you won’t be immune to the infection and should take steps to reduce your risk of becoming infected again. 

If the infection is diagnosed in the early stages, known as acute hepatitis, treatment may not need to begin straight away. Instead, you may have another blood test after a few months to see if your body fights off the virus. 

If the infection continues for several months, known as chronic hepatitis, treatment will usually be recommended.” 

There is so much more information about hepatitis C in kidney disease that I urge you to explore the sites I visited today. 

Until next week, 

Keep living your life! 

These are not the Lucky Kind

We all know about the superstition that horseshoes are lucky. Some might even argue that this is fact, not a superstition. Today, I’ll be writing about the unlucky kind of horseshoe. Some of you may know about this already; some may not. I didn’t and was surprised by what I found. 

First off, a definition of horseshoe kidneys [Surprise!] might be helpful. WebMD was pretty comprehensive in their definition: 

“Horseshoe kidney, also called renal fusion, is a condition that starts before a child is born. 

As a baby develops in the womb, their kidneys move into position just above the waist — one on each side of the body. But sometimes that doesn’t happen as it should. Instead, the kidneys fuse together at their base, forming a U or horseshoe shape. It usually happens between weeks 7 and 9 of the pregnancy. 

The condition isn’t common — about 1 in 500 babies have it, boys more often than girls. And many kids won’t have serious health issues because of it. 

However, about one in three children with fused kidneys will also have a problem with their heart, blood vessels, nervous system, reproductive or urinary systems, digestive system, or bones. There’s no cure for renal fusion, but your child’s doctor can help them manage those conditions.” 

Oh, so we’re back in pediatrics again. I’m glad I decided to write about pediatric kidney problems once my first grandson was born a little over three years ago. My daughter tells me she and her friends find my pediatric kidney blogs helpful. At least, that’s what I think she said. Here’s hoping every parent finds the pediatric kidney blogs helpful. 

Back to the topic at hand… or kidney, rather. Of course, my next step was to find out what causes horseshoe kidney. Thanks are due to MedicalNewsToday for the following information: 

“Doctors are not sure what causes horseshoe kidney, but certain factors seem to raise the risk. 

People with certain chromosomal disorders have a higher chance of also having horseshoe kidney. These disorders include: 

Edwards syndrome 

Turner syndrome 

Down syndrome 

However, having horseshoe kidney does not necessarily mean a person has a chromosomal abnormality. Other factors that scientists associate with horseshoe kidney include: 

alcohol consumption during pregnancy 

glycemic control due to diabetes 

exposure to certain drugs during pregnancy, such as thalidomide 

Doctors no longer give thalidomide to pregnant people, but some people affected by the drug still survive today.” 

I reasoned that we all know what Down syndrome is, but not necessarily the other two syndromes. I turned to Symptoms and Treatments for explanations: 

“Edwards syndrome is a chromosomal abnormality characterized by the presence of an extra copy of genetic material on the 18th chromosome, either in whole or in part. The additional chromosome usually occurs before conception. The effects of the extra copy vary greatly, depending on the extent of the extra copy, genetic history, and chance. 

This disorder [Turner syndrome] also known as gonadal dysgenesis affects women whose X chromosome is missing or have other abnormalities with one of their sex chromosomes. Normal females have forty six chromosomes comprising two X chromosomes. When one has Turner syndrome, he or she has one X chromosome and if the two are present, one of them is usually abnormal.” 

I wondered if there were symptoms. Boston Children’s Hospital answered that question: 

“While each child may experience symptoms differently, the most common symptoms of horseshoe kidney include: 

urinary tract infection: usually uncommon in children under 5 years and unlikely in boys at any age 

kidney stones: if the stones remain in the kidney, your child may have no symptoms. If the stones pass through her urinary tract, she could experience the following symptoms: 

flank (around the side, just above the waist) pain 

restlessness 

sweating 

nausea and/or vomiting 

blood in urine 

changes in urinary frequency 

chills 

fever 

cloudy urine 

hydronephrosis: occurs when there is a urinary tract obstruction and the kidney(s) become enlarged and potentially damaged. Symptoms of hydronephrosis may include the following: 

abdominal mass 

poor weight gain 

decreased urination 

urinary tract infection 

About one-third of children with horseshoe kidney have no symptoms.” 

How do you even know your baby has horseshoe kidneys? I suppose you could tell by the symptoms, but some babies don’t have any symptoms. Children’s National clarified the diagnostic procedure for horseshoe kidneys: 

“The healthcare provider will ask about your child’s symptoms and health history. He or she may also ask about your family’s health history. He or she will give your child a physical exam. Your child may also have tests, such as: 

Renal ultrasound (sonography). This is a painless test that uses sound waves and a computer to create images of body tissues. During the test, a healthcare provider moves a device called a transducer over the belly in the kidney area. This sends a picture of the kidney to a video screen. The healthcare provider can see the size and shape of the kidney. He or she can also see a growth, kidney stone, cyst or other problems. 

Mag-3 diuretic renal scan. A diagnostic nuclear imaging technique that is conducted by injecting a radioactive fluid into the vein. The radioactive material is then carried to the kidneys where it gives off signals that can be picked up by cameras. Midway during the procedure a diuretic medication is given to speed up urine flow through the kidneys. This helps detect any area of blockage in the urinary tract. 

Blood tests. These look at how well the kidneys are working. 

Urine test. This test checks for chemicals in the urine and signs of infection.” 

Babies grow up. What happens to adults who have horseshoe kidneys? The article: Renal outcomes in adult patients with horseshoe kidney pulled no punches: 

“Patients with HSK [horseshoe kidney] are at risk of ESRD [End Stage Renal Disease], which may be attributable to the high prevalence of complications. Accordingly, these patients should be regarded as having chronic kidney disease and require regular monitoring of both kidney function and potential complications.” 

One more thing: horseshoe kidney is also called renal fusion. 

Until next week, 

Keep living your life! 

Meet Me at the Meeting

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

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

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

Founded by Patients for Patients 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

What a Waste

Once again, my online friend Geo mentioned something related to chronic kidney disease that I hadn’t thought of. His point of view about chronic kidney disease is a lot different than mine. When Geo brings something to my attention, he also includes medical links. I read them and thought to myself, “Thanks, Geo. This is something CKD patients should know about.”  

The something is Hydroxymethylbutyrate. That’s quite a mouthful, so it’s usually referred to as HMB. Ring any bells? It didn’t for me, so I turned to WebMD to find out just what this is. 

“Hydroxymethylbutyrate (HMB) is a chemical that is produced when the body breaks down leucine. Leucine is an amino acid, one of the building blocks of protein. People use HMB to make medicine. [Gail here: I thought that might be a typo, but no, that’s the quote.] 

HMB is most commonly used for building muscle or preventing muscle loss.” 

Apparently, it many different names according to the same source: 

“Beta-hydroxy-beta-methylbutyrate, B-Hydroxy B-Methylbutyrate Monohydreate, Beta-Hydroxy-Beta-Methylbutyric Acid, Calcium B-Hydroxy B-Methylbutyrate Monohydrate, Calcium HMB, Hidroximetilbutirato, HMB, HMB de Calcium, Hydroxyméthylbutyrate, Hydroxymethyl Butyrate, Hydroxyméthyl Butyrate”  

Hmm, so what does preventing muscle loss have to do with us? I imagine body builders might also use it to build muscle. That, of course, is pure conjecture on my part. Wait a minute, I do remember something about muscle loss with kidney disease. Maybe that’s the angle we should research here. Let’s see. 

An article in the September 2020 issue of Journal of Nephrology makes it clear just how much this should matter to us. 

“Muscle loss is a frequent finding in CKD, especially for patients with more advanced stages of the disease including ESKD patients undergoing hemodialysis (HD) …. The consequences of muscle loss are not only related to physical disability as commonly observed in the elderly. [Gail again: Uh-oh, since the definition of elderly is over 65, this means me… and possibly you.] In fact, many studies in the past decades have also linked muscle loss in CKD patients with worse QoL, depression, PEW, fracture risk, cardiovascular complications, graft failure and post-operative complications in transplant recipients, as well as with increased hospitalization and mortality.”   

You may need these definitions. I know I did. QoL means quality of life, while PEW means protein energy wasting. 

Holy cow! How did I not know this? How does muscle loss work anyway? This explanation is from Nephrology, Dialysis, Transplantation: 

“Muscle mass is maintained by the balance of protein metabolism, and small but persistent imbalances between protein synthesis [That means one of the most fundamental biological processes by which individual cells build their specific proteins.] and degradation will induce muscle wasting. It is now recognized that the catabolic [Catabolism is the part of the metabolism responsible for breaking complex molecules down into smaller molecules.] environment of CKD, which includes metabolic acidosis [the buildup of acid in the body due to kidney disease or kidney failure], inflammation, increased glucocorticoid [a kind of steroid] production and suppressed insulin/insulin-like growth factor 1 (IGF-1) signalling [sic] stimulates and accelerates substantial muscle protein loss through the activation of protein degradation, suppression of protein synthesis and impairment of muscle regeneration ….” 

Sorry about all the inserts, but definitions were needed. Thanks to all the different dictionaries that afforded these definitions. Anyway, this does not sound good, folks. Maybe we’d better find out how we can recognize this in ourselves. 

It’s a little bit technical, but the out-take from this year’s Nutritional Management of Renal Disease (Fourth Edition) on Science Direct offers the answer we’re looking for: 

“PEW is manifested by low levels of serum albumin or prealbumin, sarcopenia [a condition characterized by loss of muscle mass], weight loss, vascular calcification, and increased levels of C-reactive protein, and it is closely associated with increased risk of morbidity and mortality and impaired quality of life….” 

No good.  We have to do something about this, but what? The most usual answer I found as I scoured website after website is Krager’s  Blood Purification study: 

“We have reviewed the pathophysiology of pertinent nutritional issues across the CKD, ESRD, and transplant CKD spectrum. New developments include nutritional benefits of intradialytic meal replacement, scoring systems for PEW, and the emerging field of exercise therapy in CKD and ESRD to combat frailty and reverse the effects of PEW.” 

I’m sorry, Geo, I could find very little about using HMB to treat protein wasting in CKD.  The good news is that it does no harm to the kidneys, either. Every website I pulled up made that conclusion. More good news is that, 

“HMB is an effective supplement for those who want to speed up their recovery from high-intensity exercise — both weight training and endurance cardio. It helps to boost and preserve muscle mass and strength, and can be useful for weight loss….” 

The above quote is from MyProtein, a training site that does sell supplements. However, it was written by a registered dietitian. 

Let’s get back to what CKD patients can do for protein wasting now. PubMed Central recommends the following: 

• Dietary Intervention 
• Phosphorus management 
• Alkali therapy for metabolic acidosis 
• Exercise 

This was a hard blog to write. The ones with concepts that are new to me usually are. But I thoroughly enjoy learning about new concepts, so I don’t mind how hard it was. I hope you learned something new, too. 

Topic change: These are the CDC’s statistics as of last year, 

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

You know what to do: urge your friends and family to take the simple blood and urine tests for CKD. 

Until next week, 

Keep living your life!