And, Finally … (Part 1)

As National Donate Life Month draws to a close, we have a guest blog from Uncle Jim. That’s the same Jim Myers who is off to Washington, D.C. to speak on our behalf, has more Facebook groups than I can count right now, has his own podcast, and is just always involved with kidney matters. We are lucky to have him on our team.

Jim has approached the same topic I wrote about several months ago, but his approach is much more detailed and more in-depth than the blog I wrote. Here is something kidney transfer recipients should keep in mind as you read today’s blog: Most kidney transplant patients experience hearing loss, especially at higher frequencies. Unfortunately, kidney transplantation may not significantly improve hearing problems.

Since Uncle Jim is so thorough, I’ve had to separate his guest blog into two blogs, so you know next week will be on the same topic. Take it away, Jim!


 THE CONNECTION BETWEEN CKD AND HEARING LOSS

In my lifetime I have lost the hearing in my right ear. Recently, I discovered that my hearing loss may be connected to my 42 years of CKD/PKD, so I wanted to share what I have learned. I did a broadcast on Friday, March 8, 2024 on Hearing Loss and Kidney Disease. Here are some of my thoughts.

According to experts, there is a connection kidney disease and loss of hearing. (Nature.com)
There are nearly 1.6 billion people that suffer from hearing loss & it is the third-leading cause of disability worldwide. Chronic kidney disease (CKD) is also a common condition that is associated with adverse clinical outcomes and high health-care costs. It affects 15% of US adults & 37 million x are estimated to have chronic kidney disease.

The question is whether or not there is a connection between the two.  The answer appears to be yes. According to experts, the kidneys and the hearing organs share a common morphogenetic (same cells, tissue & genetic structure) origin and rely on similar biological structures (for example, cilia) and processes (for example, specialized cellular transport mechanisms) to function. So, the same Genetic Abnormalities that cause CKD can also cause hearing loss, and vice versa.

The NIH states,” Inadequate excretion of metabolic waste products by the kidneys results in circulation of these toxic materials in the body. This can cause damage to tissues and organ systems including the auditory system which can lead to hearing loss.” According to Nature.com, “A strong, graded and independent relationship exists between kidney function and the risk of hearing loss; the highest risk is observed in patients on haemodialysis, but kidney transplant recipients and people with mild CKD are also at increased risk.” Because tissue in our ear is substantially similar to the tissue in our kidneys, the toxic build up that damages kidney tissue also is capable of damaging inner ear tissue.

This appears to be confirmed by a 2010 study in Australia, that not just specific kidney diseases, but kidney disease in general can cause hearing loss in kidney patients. “This study examined the medical records of 2,564 people aged 50 and over, 513 of whom had moderate chronic kidney disease. Some 54.4% of all the patients with chronic kidney disease had some degree of hearing loss, as compared to only 28.3% of those who had no kidney problems.” Even more interesting, 30% of the CKD patients had a severe hearing loss compared to just 10% in those patients without CKD.”

The study concluded, “The link can be explained by structural and functional similarities between tissues in the inner ear and in the kidney. Additionally, toxins that accumulate in kidney failure can damage nerves, including those in the inner ear.” Also, some treatments for kidney ailments are ototoxic, meaning they cause hearing loss.”

As stated earlier, this is readily found in patients that are on hemodialysis. Experts suggest that infants, children and  adults with malformation or dysfunction of their hearing organs should be evaluated for the presence of malformation or dysfunction of their kidneys, and people with kidney disease should have their hearing checked for loss.

Some types of kidney diseases are mentioned more prominently than others in the literature as causes of hearing loss and if you have one of these diseases you may wish to have your hearing checked as well as your  kidney function. These diseases include:

• Alport’s Syndrome
• Polycystic Kidney Disease
• Meniere’s Disease

Many people with Alport’s Syndrome have problems with their ears and eyes. Alport syndrome is a rare inherited disorder that damages the tiny blood vessels in the kidneys. It can also cause hearing loss and eye problems. Alport syndrome is an inherited form of kidney inflammation (nephritis). It is caused by a defect (mutation) in a gene for a protein in the connective tissue, called collagen. The disorder is rare. There are three genetic types:

• X-linked Alport syndrome (XLAS) — This is the most common type. The disease is more severe in males than in females.
• Autosomal recessive Alport syndrome (ARAS) — Males and females have equally severe disease.
• Autosomal dominant Alport syndrome (ADAS) — This is the rarest type. Males and females have equally severe disease.

The frequency in which hearing loss appears with Alport’s is striking. Studies show that, approximately, 70% of patients with AS suffer from progressive sensorineural hearing loss.  Over time, Alport syndrome also leads to hearing loss in both ears. By the early teens, it is more common in males with XLAS, though in females, hearing loss is not as common and happens when they’re adults. With ARAS, boys and girls have hearing loss during childhood. With ADAS, it occurs later in life. Hearing loss usually occurs before kidney failure. Approximately 80% of males with X-linked Alport syndrome (XLAS) develop hearing loss during their lifetime, often by their teens. Hearing loss in females with XLAS is less frequent and occurs later in life, although about 40% will experience hearing loss.

Studies have shown that Polycystic Kidney Disease can cause hearing loss. One study in particular found a family with ADPKD associated with bilateral sensorineural deafness in a pedigree of four affected members in four generations.

Gail here. I found myself wanting to read more, but this blog is already longer than usual. Keep yourself primed for the remainder of Uncle Jim’s guest blog next week.

By the way, have you listened to Uncle Jim interview me last Friday night? Here’s the YouTube of it:

Until next week,

Keep living your life!

We’re Just Not Compatible

How many times have you heard this as a young single person? Not too many, I hope. I can clearly remember feeling terrible upon hearing this, “It’s not you; it’s me.” Worse yet when I was the one saying it. It did seem necessary all that long ago. Read on and you’ll find out what this has to do with National Donor Month.

As far as incompatible, in this case, I don’t mean you and me. [Although that could be true.] I mean a kidney transplant between two people who are not a match. Unsurprisingly, this is called an incompatible kidney transplant and you just might call it old fashioned since paired kidney donations have appeared. Let’s see what we can find out about incompatible donation anyway.

Photo by Nathan Cowley on Pexels.com

My old friend, The Mayo Clinic, offers the following:

“In the past, if your blood contained antibodies that reacted to your donor’s blood type, the antibody reaction would immediately cause you to reject your transplant. This would prevent a successful transplant. Back then, the only option was to identify recipient-donor transplant pairs with compatible ABO blood types.

Over the years, advances in medicine made ABO incompatible kidney transplant possible between some recipients and living donors. The option of having a living donor with a different blood type reduced the time on a waiting list for some people.

With an ABO incompatible kidney transplant, you receive medical treatment before and after your kidney transplant to lower antibody levels in your blood and reduce the risk of antibodies rejecting the donor kidney. This treatment includes:

  • Removing antibodies from your blood (plasmapheresis)
  • Injecting antibodies into your body that protect you from infections (intravenous immunoglobulin)
  • Providing other medications that protect your new kidney from antibodies) [stet.]”

I don’t know that I’d want to go through all this in addition to the bodily trauma of having a new organ in my body. Then again, knowing me, I’d probably have jumped at the chance if that was the only way for me to stay alive. [Hence, my eagerness to endure chemotherapy, surgery, and radiation to eradicate that nasty pancreatic cancer from my body.]

I do know that I needed more information on plasmapheresis since it was a new concept for me. The National Kidney Foundation did not disappoint:

“Plasmapheresis is a process that filters the blood and removes harmful antibodies.  It is a procedure done similarly to dialysis; however, it specifically removes antibodies from the plasma portion of the blood.  Antibodies are part of the body’s natural defense system which help destroy things that are not a natural part of our own bodies, like germs or bacteria.  Antibodies against blood proteins can lead to rejection after a blood-type incompatible transplant.  In severe cases, this could cause the kidney transplant to fail.  Plasmapheresis before transplant removes antibodies against the donor blood-type from the recipient, so they can’t attack and damage the donated kidney. 

Depending on the antibody levels and the transplant center protocols, a medicine to keep more antibodies from forming may also be administered intravenously. In rare cases, the patient’s spleen is removed using minimally invasive surgical technique to keep antibody levels low.

 After the transplant, the patient may require additional plasmapheresis treatments before discharge from the hospital. He or she will then take the similar immunosuppression medications as patients receiving a blood type compatible kidney.  At some centers, a biopsy may be done soon after transplant to ensure antibodies are not causing rejection of the transplanted kidney.”

I was having a pretty hard time figuring out when and how incompatible transplants started being used until I hit upon the World Journal of Transplantation:

“Principally after 1998, there was a worldwide increase in the rate of kidney transplantations from living donors that involved ABOi. This fact may be principally ascribed to four factors. (1) Since 1998, our knowledge of the diagnosis and treatment of ABMR has substantially improved. (2) By the beginning of 2000, Japanese authors published excellent results in renal transplantations involving ABOi … although the main limitation of the Japanese strategy was the splenectomy associated with their pretransplantation protocol. (3) Later, Johns Hopkins University and the Mayo Clinic in the United States documented the possibility of performing such transplantation without splenectomy with the administration of an anti-CD20 monoclonal antibody (rituximab [RTX].  (4) Finally, Swedish authors developed a new technique that demonstrated outcomes in renal transplantation involving ABOi that were similar to the outcomes of standard renal transplantation….”

Wait a minute. What is this splenectomy of which they speak? Oh, right, I had one during my cancer surgery. Welcome back to my long absent favorite dictionary, the Merriam-Webster, for the definition: surgical removal. Now, what’s a spleen? Thank you to Medical News Today for answering my question:

“The spleen’s main roles are:

  • filtering old or unwanted cells from the blood
  • storing red blood cells and platelets
  • metabolizing and recycling iron
  • preventing infection

The spleen filters the blood, removing old or unwanted cells and platelets. As blood flows into the spleen, it detects any red blood cells that are old or damaged. Blood flows through a maze of passages in the spleen. Healthy cells flow straight through, but those considered unhealthy are broken down by large white blood cells called macrophages.

After breaking down the red blood cells, the spleen stores useful leftover products, such as iron. Eventually, it returns them to the bone marrow to make hemoglobin, the iron-containing part of blood,

The spleen also stores blood cells that the body can use in an emergency, such as severe blood loss. The spleen holds around 25-30% of the body’s red blood cells and about 25% of its platelets.

The spleen’s immune function involves detecting pathogens, such as bacteria, and producing white blood cells and antibodies in response to threats.”

No wonder I’m so tired all the time. Especially if we add my chronic kidney disease stage 3B and sleep apnea. Yuck!

Oh, one last note. Remember, incompatible transplant is not used as much these days since paired donations and transplant chains have come into use.

Until next week,

Keep living your life!

Yes, Living Donation Help is Available

Let’s say you’ve read the past two  or three blogs and understand that more kidney donations are needed. Let’s say deceased donation is just not hitting you right. Let’s say you want to make a living donation since you have two kidneys and only need one to stay alive. First of all, congratulations on making that big decision. Next, do you know there are organizations that will help you… and it won’t cost you a penny. I’ll let the organizations speak for themselves.

You do need to apply for this first one. Not all applications are guaranteed entry to the program.

The National Living Donor Assistance Center
“Many people would like to donate an organ to a family member or friend, but would have trouble paying for related expenses—like transportation, lodging, food, and dependent care—that are not covered by insurance, especially if they lose wages during their recovery from donation surgery. The costs of the process can be a burden for donors and recipients; for some, these costs might make living organ donation impossible.

The National Living Donor Assistance Center exists to provide access to transplantation for those who want to donate, but face financial barriers to doing so.

This program is administered by the Division of Transplantation (DoT), Healthcare Systems Bureau (HSB), Health Resources and Services Administration (HRSA), United States Health and Human Services (HHS) through a cooperative agreement with the University of Kansas (KU) and the American Society of Transplant Surgeons (ASTS). For details about the legislation that authorizes this program and its history, please click here.”

UNOS (United Network for Organ Sharing) offers information that clarifies some of the questions you may have, in addition to assistance in donating.

“With living donation, a living person donates an organ or part of an organ for transplantation. Most living donors donate one of their kidneys or a part of their liver. Much more rarely, living donors may donate other organs. Living organ donors make thousands of transplants possible every year.

Relatives, loved ones, friends and even individuals who wish to remain anonymous often serve as living donors to spare a patient a long and uncertain wait. In 2023, more than 6,900 transplants were made possible by living donors.

If you are considering living donation, it is critical to gather as much information as you can from various sources.

View downloadable brochures for more detailed information

Who can be a living donor?

Living donors should be:

  • in good overall physical and mental health and
  • older than 18 years of age.

Medical conditions such as uncontrolled high blood pressure, diabetes, cancer, certain infections, or an uncontrolled psychiatric condition, could prevent you from being a living donor.

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.

Visit the UNOS patient website, Transplant Living, to learn more about living donation.”

The National Kidney Registry outlines the approximate time necessary to donate a kidney.

“Donating a kidney is a life-changing gift but also a major commitment that involves extensive testing, major surgery and weeks of recovery time. If you decide to donate a kidney, here’s the process you’ll go through.

Screening & Testing

  1. 45 mins Complete a confidential screening / medical history
  2. ~3 days Center will contact you
  3. ~3 days Complete standard workup
  4. 1 – 4 months Get cleared for donation

Surgery & Recovery

  • 1 day Complete pre-op
  • 1 – 5 hours Complete surgery
  • 1 – 4 days Recover in hospital
  • 1 week Refrain from flying
  • 1 – 4 weeks Recover at home*

*Most people can return to normal activities after 2 – 4 weeks. Donors with physically demanding jobs may need 4 – 6 weeks of recovery before returning to work. High-performance athletes will need 6 months to a year before they are back to pre-donation performance levels.”

How could I not check the American Kidney Fund for more information?

“If you are interested in living kidney donation:

  • 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.”

Hey, how do you find the transplant centers anyway? The National Kidney Foundation offers easy to follow directions.

“To find a transplant center in your area visit the Organ Procurement and Transplantation Network (OPTN) website. Then follow these steps:

  1. Select ‘Transplant Centers by Organ’ under Member Type
  2. Select ‘Kidney’ for Organ Type
  3. Select your state or region”

I tried it… just to check, of course. I entered my state rather than region and found four kidney transplant centers in Arizona. Well, that was easy.

Today’s blog was only a sampling of the places that can help you with your living kidney donation. I hope it was enough to peak your interest.

Until next week,

Keep living your life!

National Donate Life Month Redux

It’s the second week of National Donor Month already. I did want to say congratulations again to all those who post on social medica that they’ve received their kidney… and not just this month.

I’d like to show you some of the activities for this month. You may want to join some of these observances. Thank you to Donate Life America for the following list:

  • National Donate Life Blue & Green Day– April 12, 2024
    On National Donate Life Blue & Green Day, the public is encouraged to wear blue and green and to engage in sharing the Donate Life message and promoting the importance of registering as an organ, eye and tissue donor.
  • Blue & Green Spirit Week– April  6–12, 2024
    Each day of the week leading up to National Donate Life Blue & Green Day is dedicated to a special theme, and will include: recognizing donors, volunteers and healthcare heroes; giving hope to those waiting; and engaging the public in fun at-home activities.
  • National Pediatric Transplant Week– April 21–27, 2024
    National Pediatric Transplant Week focuses on the powerful message of ending the pediatric transplant waiting list. Throughout the week, clinical partners share their innovative work and patient stories (candidates and recipients), donor families whose children have saved and healed lives through organ, eye, and tissue donation are honored, and recipient families share their thanks and celebrate milestones. Donate Life America (DLA) would like to thank the United Network for Organ Sharing (UNOS), the American Society of Transplantation (AST),  American Society of Transplant Surgeons (ASTS) and Transplant Families for their partnership in developing and promoting National Pediatric Transplant Week.”

By the way, this is all new to me. So new that I missed Donate Life Living Donor Day on April 3. For those of you who are living donors, I sincerely hope both you and the person or chain members you donated to are doing well and enjoyed the observances that day.

Donate Life America’s web page has an explanation of who they are for folks who haven’t heard of them before or folks that have but didn’t quite know what they did [like me]:

“Donate Life America is a 501(c)3 nonprofit organization leading its national partners and Donate Life State Teams to increase the number of donated organs, eyes and tissues available to save and heal lives through transplantation while developing a culture where donation is embraced as a fundamental human responsibility. 

DLA owns, manages and promotes Donate Life℠, the national logo and brand for the cause of donation; motivates the public to register as organ, eye and tissue donors; provides education about living donation; manages the National Donate Life Registry at RegisterMe.org; and develops and executes effective multi-media campaigns to promote donation.” 

I am stage 3B chronic kidney disease. I know little about donation or transplants. So, I need to know why there are all these celebrations and observances. Perhaps you too are curious. The Kidney Foundation answered my question:

“Many people who need transplants of organs and tissues cannot get them because of a shortage of donations. Of the 123,000 Americans currently on the waiting list for a lifesaving organ transplant, more than 101,000 need a kidney, but only 17,000 people receive one each year. Every day 12 people die waiting for a kidney. Organ and tissue donation helps others by giving them a second chance at life.”

Whoa! How can that be? Maybe religious beliefs forbid donation? As a Jew, I was taught that I need to be buried as I was born – whole. My Jewish Learning, my go-to site for clarifying anything I don’t understand about my religion offers the following:

“… there is widespread support for organ donation across the spectrum of Jewish observance, from Reform to haredi Orthodox. Some authorities, citing the injunction in Leviticus 19 not to stand idly by the blood of one’s neighbor, go further in suggesting that Jewish tradition mandates organ donation in certain circumstances. The Conservative movement endorsed that position in 1995, when it established that post-mortem organ donation is not merely permissible, but required. Some Orthodox figures also consider organ donation obligatory.”

Christianity, Islam, Muslim, Hinduism, and Buddhism are also in favor of organ donation. Rather than blanket approval of organ donation, many religions differentiate between the two types of donations: living and deceased. Remember, there may be different sects within the same religion and these sects may differ in their opinions regarding organ donation. 

I think I mentioned in an earlier blog that I am donating my disease-ridden body to science instead. While my religion does not endorse this, there is so much wrong with my body that I feel it can offer many teaching lessons to researchers and scientists.

Life Source reminds us why donations – not only kidney donations – are so important:

  • “In the United States, more than 100,000 men, women and children are on the national organ transplant waiting list ….
  • Every 8 minutes, a new name is added to the ever-growing transplant wait list. Unfortunately, an average of 16 people die each day waiting for their second chance at a healthy life to arrive.
  • ONE person – one registered organ donor – can save up to 8 lives through organ donation, and improve over 75 lives through tissue and cornea donation.” 

I’ve mentioned the two types of kidney donation above. I had no idea there were two until I started writing the blog. Just in case this is new to you, too, here is the information about them from UC Davis Health. Notice that living donation is further divided into different categories:

“Donor kidneys come from two sources: deceased organ donors or living donors. Deceased donors are people who have suffered brain death after a head trauma or medical problem in the brain such as bleeding.  The families of these patients make the generous decision to donate their organs. Patients who are on the transplant wait list are waiting for organs from deceased donors. It is not uncommon for patients to wait many years for a deceased donor kidney.

Kidneys can also come from living donors. There are three types of living donors:

  • Living related donors (LRD) are donors who are blood relatives of the recipient. Usually these are parents, children or siblings.
  • Living unrelated donors (LURD) are not blood related and are usually spouses or friends of the recipient.
  • A third type of living donor is called an altruistic donor or non-directed donor. These donors volunteer to donate a kidney to any person in need without knowledge of the recipient. In these cases, the transplant wait list or donor paired exchange can be used to select a recipient.”

There will be more on donation in next week’s blog.

Until next week,

Keep living your life!

This is no Joke

Today is April Fool’s Day! [Oh, happy anniversary to cousins Gail and Bob Halpern.] But today’s topic is no joke. Last week, the lovely Leesa Thompson eased us into National Donate Life Month. We’ll learn more about this today.

Let’s start at the beginning. This is a relatively new celebration, started in 2003, only 21 years ago. The American Society of Transplantation explains:

“National Donate Life Month (NDLM) was instituted by Donate Life America and its partnering organizations in 2003. Celebrated in April each year, NDLM features an entire month of local, regional and national activities to help encourage Americans to register as organ, eye and tissue donors and to celebrate those that have saved lives through the gift of donation.”

The American Society of Transplantation describes itself as:

“The American Society of Transplantation is a diverse organization dedicated to advancing the field of transplantation and improving patient care by promoting research, education, advocacy, organ donation, and service to the community through a lens of equity and inclusion.

The history of the AST starts in 1981, when its charter members met and decided a separate society should be organized for transplant physicians. The American Society of Transplant Physicians (ASTP) was founded on May 10, 1982, and open to all physicians and health professionals interested in transplant medicine and biology. In 1998, the ASTP name was changed to the American Society of Transplantation (AST). Today, we are a growing and diverse organization of more than 4,200 members representing all areas of the field of organ transplantation and donation. In 2018, the Society grew, incorporating patient voice into its efforts through the evolution of its public facing Power2Save campaign. As we look to the future, our vision is bold and aspirational. While our 5 pillars remain the same, it is important that we plan a deliberate roadmap for the future.”

Donate Life America was a fount of information. One type of donation is deceased donation. I wrote about that in last year’s Christmas blog. I unwittingly called it a cadaver donation and am still apologizing for that mistake. However, I digress, so back to Donate Life America which offers more information about deceased donation:

“Deceased organ donation is the process of giving an organ or a part of an organ, at the time of the donor’s death, for the purpose of transplantation to another person. Only after all efforts to save the patient’s life have been exhausted, tests have been performed to confirm the absence of brain or brainstem activity, and brain death has been declared, is donation a possibility. 

The state donor registry and National Donate Life Registry are searched securely online to determine if the patient has authorized donation. If the potential donor is not found in a registry, their next of kin or legally authorized representative is offered the opportunity to authorize the donation. Donation and transplantation professionals follow national policy to determine which organs can be transplanted and to which patients on the national transplant waiting list the organs are to be allocated.”

I’ve written about living donation, too. Rather than list the multiple blog dates, you can use the Topic dropdown on the right side of the blog and scroll down to donation. In the meantime, I’m going to hop over to the American Kidney Fund to find out about the different kinds of living donation:

“ If you need a new kidney, consider a living donor kidney transplant. A kidney transplant from a living donor will last longer than a transplant from a donor who has died (a deceased donor). And your transplant can happen as soon as you and your living donor are ready!

A living donor kidney transplant is a surgery to give you a healthy kidney from someone who is still alive. On average, living kidney donor transplants last 15 to 20 years. Deceased donor transplants last 10 to 15 years on average. Each year, about 4 out of every 10 donations (40%) are from living donors. 

What are the types of living donor transplants?

Directed & nondirected donation

Directed donation is when a living donor gives a kidney to a person they have chosen, such as a family member or friend. This is the most common type of living donor transplant.

Nondirected donation is when a living donor gives a kidney to a stranger. This is sometimes called altruistic or good Samaritan donation and is the least common type of donation.

Kidney paired donation (KPD) and donation chains

Kidney paired donation (KPD) and donation chains can happen when a donor and recipient pair are not a good match, so they swap with other pairs to get better matches. These swaps make transplants possible for more people and have become more common in recent years:

  • With kidney paired donation (also called paired exchange), two donor and recipient pairs swap donors to get better kidney matches.
  • With donation chains, many pairs or nondirected donors swap donors to get better kidney matches.

Incompatible kidney transplant

Some transplant centers now offer incompatible kidney transplants when a donor and recipient are not a good match. Transplant doctors use special methods to make the recipient’s body less sensitive to the donor’s incompatible kidney. Talk to your doctor about if this could be an option for you.”

Because I’m 77, I wondered if my age would be a problem should I need a transplant. The National Kidney Foundation answered my question:

“In many cases, people who are older or have other health conditions like diabetes can still have successful kidney transplants. Careful evaluation at a transplant center is needed to understand and deal with any special risks. You may be asked to do some things that can lessen certain risks and improve the chances of a successful transplant. For example, you may be asked to lose weight or quit smoking. Only a transplant center can decide if you are healthy enough to receive a kidney transplant.

If you have diabetes, you may also be able to have a pancreas transplant. Ask your healthcare professional about getting a pancreas transplant along with a kidney transplant.”

After 14 years of writing about anything kidney related, I realize this is a pretty superficial blog about donation. Hang on, we have the rest of the month for more information.

Until next week,

Keep living your life!

A Matter of Life: National Kidney Month, Donor Month, and the Donor’s Dilemma

Our old friend, Leesa Thompson …. Wait a minute! I don’t mean you’re old, Leesa. I mean we’ve had a couple of guest blogs from you before. Please forgive me. Anyway, Leesa has brought another guest blog to me. This one is perfect for National Kidney Month and a lovely way to end this celebratory month. Take it away, Leesa…

National Kidney Month is observed annually in March to raise awareness about kidney health, kidney disease prevention, and the importance of early detection and treatment. During this month-long observance, various organizations, including the National Kidney Foundation (NKF) and the American Kidney Fund (AKF), as well as healthcare providers and advocates, work to educate the public about kidney health and the risk factors associated with kidney disease. The primary goals of National Kidney Month are to:

1. Raise Awareness: National Kidney Month aims to increase awareness about the importance of kidney health and the prevalence of kidney disease, which affects millions of people worldwide. By educating the public about the risk factors, symptoms, and complications of kidney disease, advocates hope to encourage individuals to take proactive steps to protect their kidney health.

2. Promote Prevention: Kidney disease is often preventable or manageable when detected early. National Kidney Month provides an opportunity to promote healthy lifestyle habits, such as maintaining a balanced diet, staying hydrated, exercising regularly, managing blood pressure and blood sugar levels, and avoiding tobacco use, which can help reduce the risk of developing kidney disease.

3. Support Patients: National Kidney Month also serves as a platform to show support for individuals living with kidney disease and those who have undergone kidney transplantation. It highlights the importance of access to quality healthcare, treatment options, and support services for kidney disease patients and their families. Throughout National Kidney Month, activities may include educational events, screenings, fundraisers, advocacy campaigns, and social media initiatives aimed at raising awareness and promoting kidney health. By participating in these activities and spreading the word about kidney health, individuals can help reduce the burden of kidney disease and improve outcomes for those affected by this condition.

Donate Life Month is an observance held annually in April [Gail here: more on that next month] to raise awareness about organ donation and encourage individuals to register as organ, eye, and tissue donors. During Donate Life Month, various events, campaigns, and educational initiatives are organized by organizations such as Donate Life America, transplant centers, and other healthcare organizations to promote the importance of organ donation and transplantation. The primary goal of Donate Life Month is to inspire people to make the decision to become organ donors and to discuss their wishes with their families. By increasing awareness about the critical need for organ donors and dispelling myths and misconceptions surrounding donation, advocates hope to save more lives and improve the quality of life for individuals awaiting life-saving transplants. Throughout the month of April, activities may include community outreach events, educational workshops, social media campaigns, donor registration drives, and storytelling initiatives featuring transplant recipients, donor families, and healthcare professionals. These efforts aim to highlight the profound impact of organ donation on individuals and communities and to encourage meaningful conversations about donation and transplantation. Participation in Donate Life Month provides an opportunity for individuals to learn more about the donation process, the importance of registering as a donor, and the incredible gift of life that organ donation represents. By engaging with the Donate Life community and supporting initiatives to raise awareness, individuals can help to increase the number of registered donors and ultimately save more lives through organ transplantation.

Becoming a living kidney donor is a decision that carries significant weight, both for the donor and the recipient. Understanding the full spectrum of advantages and disadvantages associated with this altruistic act is essential for individuals contemplating such a profound gesture, particularly in light of the critical shortage of available kidneys for transplantation.

On the positive side, the primary benefit of being a living kidney donor lies in the opportunity to save a life. With approximately 100,000 individuals approved for kidney transplants in the United States alone, the demand for organ donors far exceeds the available supply. By offering one of their kidneys to someone suffering from kidney failure, donors directly impact the recipient’s health and lifespan. This act of selflessness not only saves a life but also brings immeasurable satisfaction and a deep sense of fulfillment to the donor, knowing they’ve made a tangible and potentially life-saving difference in another person’s life. Moreover, the impact of a kidney donation extends beyond the individual recipient to their family, friends, and community. It fosters a culture of compassion and generosity, inspiring others to consider organ donation as a means of giving back and making a positive impact on society. Additionally, undergoing the rigorous medical evaluation process before donation can lead to early detection and treatment of previously undiagnosed health issues in the donor, ensuring the best possible outcome for both parties involved. Furthermore, living kidney donors typically experience minimal long-term health effects, with studies indicating that they generally enjoy good health and life expectancy post-donation. This reassurance can alleviate concerns about the potential impact on the donor’s own health and well-being. Additionally, the experience of being a living kidney donor can lead to personal growth and a deeper appreciation for one’s own health. Donors often report feeling a renewed sense of purpose and gratitude for their own well-being, inspiring them to prioritize self-care and adopt healthier lifestyle habits.

However, despite the numerous benefits associated with being a living kidney donor, there are also potential drawbacks and considerations to be mindful of. Donating a kidney involves undergoing surgery, which carries inherent risks such as bleeding, infection, and adverse reactions to anesthesia. While serious complications are rare, donors must be prepared for the physical discomfort and recovery period following surgery, which may necessitate several weeks of rest and limited activity. Furthermore, the emotional and psychological impact of being a living kidney donor should not be underestimated. Donors may experience a range of emotions, including anxiety, guilt, and worry about the recipient’s well-being, as well as concerns about their own health and future. It is essential for donors to have access to adequate support and counseling throughout the donation process to address any emotional challenges and ensure their well-being. Additionally, there may be practical and logistical considerations to contend with, such as arranging time off from work for surgery and recovery, coordinating travel and accommodations if the donor and recipient are not in the same location, and navigating financial expenses related to the donation process. Donors should carefully plan and prepare for these logistical challenges to minimize stress and ensure a smooth donation experience.

In summary, while being a living kidney donor offers the opportunity to save a life and make a profound difference in someone’s life, it is essential for individuals to carefully weigh the potential risks and benefits before making this decision. By thoroughly considering all aspects of the donation process and seeking support from medical professionals and support networks, potential donors can make an informed decision that aligns with their values and priorities, ultimately contributing to the greater good and leaving a lasting legacy of compassion and generosity.

Thank you for closing out National Kidney Month and easing us into National Donate Life Month, Leesa.

Until next week,

Keep living your life!

World Kidney Day

Last Thursday was World Kidney Day… and I’m late celebrating it. There are loads of medical issues in the family right now, but I’m trying to make up for this lapse. This past Saturday, I offered the digital versions of these books for free on Amazon:

What Is That and How Did I Get It? Early Stage Chronic Kidney

SlowItDownCKD 2011

SlowItDownCKD 2012

SlowItDownCKD 2013

SlowItDownCKD 2014

SlowItDownCKD 2015

SlowItDownCKD 2016

SlowItDownCKD 2018

SlowItDownCKD 2019

SlowItDownCKD 2020

Why? Because 90% of people with chronic kidney disease don’t know they have it. I wanted them to know enough to realize that it’s worth a blood test and a urine test to be diagnosed. I also posted three reels publicizing this offer on social media. It’s that important to me that you find out for yourself whether or not you have CKD.

Then I thought we’d do something a little different this year and let World Kidney Day speak for itself:

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

World Kidney Day comes back every year. All across the globe many hundred events take place from public screenings in Argentina to Zumba marathons in Malaysia. We do it all to create awareness. Awareness about preventive behaviors, awareness about risk factors, and awareness about how to live with a kidney disease. We do this because we want kidney health for all.

World Kidney Day is a joint initiative of the International Society of Nephrology  (ISN) and the International Federation of Kidney Foundations – World Kidney Alliance (IFKF-WKA)

…..


Advancing equitable access to care and optimal medication practice

Chronic kidney disease (CKD) is estimated to affect more than 850 million people worldwide and resulted in over 3.1 million deaths in 2019.[1] Presently, kidney disease ranks as the 8th leading cause of death[2], and if left unaddressed, it is projected to be the 5th leading cause of years of life lost by 2040.[3]

Over the last three decades, CKD treatment efforts have centered on preparing for and delivering kidney replacement therapies. However, recent therapeutic breakthroughs [4] offer unprecedented opportunities to prevent or delay disease and mitigate complications such as cardiovascular disease and kidney failure, ultimately prolonging the quality and quantity of life for people living with CKD.

While these new therapies should be universally accessible to all patients, in every country and environment, barriers such as lack of CKD awareness, insufficient knowledge or confidence with newer therapeutic strategies, shortages of kidney specialists, and treatment costs contribute to profound disparities in accessing treatments, particularly in low-and-middle-income countries, but also in some high-income settings. These inequities emphasize the need to shift focus towards CKD awareness and capacity building of the healthcare workforce.

Achieving optimal kidney care requires overcoming barriers at multiple levels while considering contextual differences across world regions. These include gaps in early diagnosis, lack of universal healthcare or insurance coverage, low awareness among healthcare workers, and challenges to medication cost and accessibility. A multi-pronged strategy is required to save kidneys, hearts, and lives:

  • Health policies – Primary and secondary prevention of CKD require targeted health policies that holistically integrate kidney care into existing health programs, secure funding for kidney care, and disseminate kidney health knowledge to the public and the healthcare workforce. Equitable access to kidney disease screening, tools for early diagnosis, and sustainable access to quality treatment should be implemented to prevent CKD or its progression.
  • Healthcare delivery – Suboptimal kidney care results from limited policy focus, inadequate patient and provider education, lack of resources for high-quality care, and limited access to affordable medication. To enact strategies successfully, it is essential to adopt a comprehensive, patient-centered, and locally oriented approaches to identify and remedy barriers to high-quality kidney care.
  • Healthcare professionals – Addressing the shortage of primary care professionals and kidney specialists requires enhancing training, minimizing loss of healthcare providers, and building capacity among healthcare workers, including primary care physicians, nurses, and community health workers. Education on appropriate CKD screening and adherence to clinical practice guideline recommendations are key to successful implementation of effective and safe treatment strategies. Embracing scientific innovation and utilizing pharmacologic and non-pharmacologic tools for CKD treatment, as well as fostering effective communication and empathy among professionals would greatly impact patient well-being.
  • Empowering patients and communities – Globally, patients struggle to access care and medication due to high costs and misinformation, which impact their health behaviors and adherence. Raising awareness about CKD risk factors such as diabetes, hypertension, and obesity, enhancing health literacy about healthy lifestyle choices, self-care, and promoting long-term adherence to treatment strategies can bring large benefits especially when initiated early and consistently maintained. Involving patients in advocacy organizations and local communities will empower them to make informed decisions and improve their health outcomes.

[1] https://vizhub.healthdata.org/gbd-results/
[2] https://www.healthdata.org/news-events/newsroom/news-releases/lancet-latest-global-disease-estimates-reveal-perfect-storm
[3] https://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(18)31694-5.pdf
[4] Renin-angiotensin inhibitors, SGLT2 inhibitors, non-steroidal mineralocorticoid receptor antagonists, and GLP-1 receptor agonists, have shown benefits in delaying kidney function decline together with reducing risks of cardiovascular events and death.”

Re-reading this, I’m wondering if there’s a method to offer all the titles offered for free this past Saturday permanently free. That just might be a teeny bit of help in raising awareness about CKD risk factors.

Remember the kidney awareness work I do is my way of giving back for all the good in my life. What good? There’s surviving pancreatic cancer, meeting Bear, maintaining a close relationship with my children, having two grandsons, awaiting a new hip, keeping my CKD and diabetes under control, and – well – I could go on and on. Sure, there was bad in my life, too, but why waste energy dwelling on that?

Talking about good, here’s hoping you had a good, fun Saint Patrick’s Day. My children and grandsons called me to wish me a Happy Saint Patrick’s Day which automatically made it a Happy Saint Patrick’s Day.

World Kidney Day may have passed, but it’s still National Kidney Month here in the United States. Honoring that, in addition to the blog and books, I’ve agreed to a podcast interview in April and to attend a pharmaceutical conference in May.

Until next week,

Keep living your life!

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!

It’s National Kidney Month

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

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

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

HISTORY OF NATIONAL KIDNEY MONTH

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

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

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

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

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

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

NATIONAL KIDNEY MONTH TIMELINE

1984

National Organ Transplant Act Passes

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

1954

First Successful Kidney Transplant

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

1943

Dialysis Invented

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

1902

Animal Experiments

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

NATIONAL KIDNEY MONTH FAQS

What month is National Kidney Month?

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

Is there a ribbon for kidney disease?

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

What are the symptoms of chronic kidney disease?

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

HOW TO OBSERVE NATIONAL KIDNEY MONTH

  1. Join the organ donor registry

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

  1. Donate to a kidney non-profit

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

  1. Be good to your kidneys

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

5 FASCINATING FACTS ABOUT KIDNEYS

  1. You only need one kidney to live

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

  1. Your kidneys are lopsided

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

  1. You can drink too much water

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

  1. Sausage casing and orange juice cans

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

  1. Climate change may increase kidney disease

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

WHY NATIONAL KIDNEY MONTH IS IMPORTANT

  1. It reminds us to be good to our bodies

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

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

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

  1. It shows that science is awesome

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

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

Until next week,

Keep living your life!

I Hear Ya

I am lucky enough to personally know several nurses. At one point or another, each has mentioned the connection between the kidneys and the ears. I disregarded that until I realized how often I’d heard it. But I didn’t understand it. One is on your head and the other above your bladder. Hmmm. Time to find out how they’re connected.

The National Library of Medicine helped in starting my research:

“Chronic kidney disease is a major public health challenge, globally. Inadequate excretion of metabolic waste products by the kidneys results in circulation of these toxic materials in the body. This can cause damage to tissues and organ systems including the auditory system which can lead to hearing loss.”

Okay, I can accept that providing we define metabolic waste products. Study.com to the rescue:

“Metabolic waste in the body refers to substances created during the metabolism of food that is unusable by the body. Metabolic waste is transported from cells by the bloodstream to be excreted by organs in the body.”

Oh, and just in case you forgot what metabolism is [from Study.com again]:

Metabolism is a chemical process that converts energy stored in food to energy an organism uses for bodily functions and maintenance. The energy in food is converted during digestion. Metabolism controls the structure and function of the body. It’s a multi-step process.

Metabolism = Food is Consumed => Catabolism & Anabolism => Energy & Metabolic Wastes

  • Catabolism: Breakdown of food into specific nutrients such as carbohydrates, proteins, and fats individual cells can use for energy
  • Anabolism: at the cellular level, individual nutrients are transformed into substances the body needs for building and maintaining bodily tissues”

As usual, I wanted more information so I went to a site connected with hearing, 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.

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. So while hearing loss doesn’t cause CKD – or vice versa – patients with certain types of hearing loss are likely to experience problems with their kidneys (and vice-versa).”

This sounds like something out of science fiction. But it also makes sense. I wanted to be certain I understood what I was reading. Spectrum Hearing made it abundantly clear:

“A child who has one developmental problem may have other problems that arose at the same time:  Kidney problems and hearing problems, for example, are often found together because both kidneys and the inner ears develop at the same time.” Dr. C. George Boeree

In utero is one example of a possible connection between ears and kidneys. Individuals with Chronic Kidney Disease (CKD) also presents [sic] with a higher likelihood of hearing loss.

Tissues of the kidney and the inner ear are similar and share a common metabolic function, therefore problems that affect kidney function can also damage the inner ear.  High blood pressure, diabetes and a family history of CKD can increase your risk of developing kidney problems and hearing problems.  High blood pressure can cause CKD and CKD can cause high blood pressure.  Diabetes can cause damage to many organs in your body including the kidneys, heart, blood vessels and the inner ear.”

I get it now, but wondered if I could find more information about hearing problems causing chronic kidney disease. Let’s go back to Hearing Unlimited for a moment:

“So while hearing loss doesn’t cause CKD – or vice versa – patients with certain types of hearing loss are likely to experience problems with their kidneys (and vice versa).”

MedlinePlus gives us an example one of the diseases involved:

“Alport syndrome is a genetic condition characterized by kidney disease, hearing loss, and eye abnormalities.

People with Alport syndrome experience progressive loss of kidney function. Almost all affected individuals have blood in their urine (hematuria), which indicates abnormal functioning of the kidneys. Many people with Alport syndrome also develop high levels of protein in their urine (proteinuria). The kidneys gradually lose their ability to efficiently remove waste products from the body, resulting in end-stage kidney disease (ESKD).

In late childhood or early adolescence, many people with Alport syndrome develop sensorineural hearing loss, which is caused by abnormalities of the inner ear. Affected individuals may also have misshapen lenses in their eyes (anterior lenticonus) and abnormal coloration of the retina, which is the light-sensitive tissue at the back of the eye. These eye abnormalities seldom lead to vision loss.”

Sensorineural? What’s that mean? The Mayo Clinic explains:

“There are three types of hearing loss:

  • Conductive, which involves the outer or middle ear.
  • Sensorineural, which involves the inner ear.
  • Mixed, which is a mix of the two.”

Let’s check Hearing Tracker to see what they have to say about hearing loss and kidney disease:

“People with CKD may also be at risk of developing other health complications, including hearing loss. A growing body of research points to a connection between CKD and hearing loss, highlighting the possible harmful effects of CKD on the hearing system. In fact, the National Kidney Foundation estimates that that 54% of people with moderate kidney disease have some kind of hearing loss.”

I never knew. Did you? So, how about getting your hearing checked?

Until next week,

Keep living your life!

Black History Month

It’s Black History Month. Ah, but what is that? “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 [prior to the pandemic].) 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.’”

To me, Black History Month means it’s time to remind you of some of the Blacks who have contributed to our health as chronic kidney disease patients. Ready? Let’s start. Oh, first, a reminder: nephrology is a young science so some of these people may still be practicing. I took the liberty of italicizing what I considered their most important contributions.

My first stop was Black Health Matters which listed the most prominent Black nephrologists:

“Kirk Campbell, M.D.

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

Olayiwola Ayodeji, M.D. 

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

Crystal Gadegbeku, M.D.

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

Eddie Greene, M.D.

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

Susanne Nicholas, M.D.

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

Carmen Peralta, M.D.

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

Neil Powe, M.D.

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

Obviously, that’s not every Black that has contributed to the understanding and treatment of chronic kidney disease. The list above is just a few of them. Then I learned about Dr. E.M. Umeukeje on the American Journal of Kidney Disease [AJKD]’s blog:

“Ebele Umeukeje is an Assistant Professor of Medicine at Vanderbilt University Medical Center. She is a nephrologist and an epidemiologist passionate about improving health outcomes in vulnerable patients with kidney disease. Her research aims to understand the influence of novel psychosocial factors on adherence in patients with kidney disease, and inform evidence-based, patient-centered innovative approaches to improve adherence and critical outcomes in this patient population….

Running around on the internet, I discovered the following on Encyclopedia.com:

Velma Scantlebury-White…

In 1989 Dr. Velma Scantlebury-White becameAmerica’s first black female transplant surgeon. In her 16 years at the University of Pittsburgh Medical Center (UPMC) and subsequently at the University of Southern Alabama (USA), Scantlebury dedicated herself to increasing the number of kidney transplants for black patients. She took the lead in educating black Americans about donating organs and tissues for transplantation, and as of 2007, she had performed more than 800 cadaver and 200 living-donor transplant surgeries in children and adults. Scantlebury had coauthored more than 100 research publications, monographs, and book chapters and was twice named one of the America’s Best Doctors.”

The African American Registry reminded me about Dr. Samuel Kountz,

“He was appointed Professor of Surgery and Chairman of the Department at the State University of New York (SUNY), Downstate Medical Center in Brooklyn, New York, beginning in 1972 and Surgeon-in-Chief of Kings County Hospital. The University of Arkansas awarded him the honorary Juris Doctor in 1973. He developed the country’s largest kidney transplant research and training program at the University of California, San Francisco. Despite his success in human transplants, Dr. Kountz believes the chief source of healthy parts to replace malfunctioning ones will be primates because there are many problems in obtaining and matching human donors.”

Some of the doctors I’ve included today are those I’ve included on previous Black History Month blogs. They’re important and I wanted to remind you about them. There are others that are not included solely due to lack of space. Check the “topics” dropdown to the right of this blog and scroll down to “Black History Month” to learn more about other Blacks in Nephrology past and present.

Until next week,

Keep living your life!

Have Some Water

Water, water, everywhere. [Thank you to Samuel Taylor Coleridge for allowing us to borrow from Rime of the Ancient Mariner.] But each kind seems to be different. For example, we drink Arrowhead brand. In New York, it was Poland Springs, although we had delicious, safe tap water. That’s something we don’t have in Arizona unless you buy a filtering system.

And that’s what today’s blog is about: another reader’s question. This one is about distilled water. It hadn’t occurred to me that you can drink it. I use it for my sleep apnea BiPAP. Maybe we should talk about what distilled water is first.

Ready for a little trip to my favorite dictionary. This is the Merriam-Webster’s definition of distilled water:

“water that has been freed of dissolved or suspended solids and from organisms by distillation (as for medical or chemical purposes)”

Back to the dictionary for the definition of distillation. [Let’s hope we’re not falling into a rabbit hole.]

“the process of purifying a liquid by successive evaporation and condensation”

I thought I’d like to know more about how this is done. The ever popular How Stuff Works explained:

“Making a batch of homemade distilled water is a straightforward process. After you’ve gathered your materials (a large pot with a lid, a smaller pot or heat-safe bowl, water and some ice), you’re ready to get started.

  1. Filling the large pot: Start by filling the large pot with water, but don’t fill it all the way to the top; leave some room to prevent it from boiling over. Place the smaller pot or bowl inside the large pot to collect the distilled water.
  2. Setting up the lid: Flip the lid of the large pot upside down and place it back on top. This inverted lid acts as a surface for the steam to condense on. Placing fresh ice on top of the inverted lid is a helpful trick. The ice cools the lid, which enhances the condensation of the steam into water droplets, making the process more efficient.
  3. Boiling and condensing: Heat the large pot until the water boils. The steam will rise, hit the cold, ice-cooled lid and condense into droplets. These droplets will then fall into the smaller pot or bowl.
  4. Collecting the distilled water: Once you’ve collected enough distilled water, turn off the heat and let the setup cool. Carefully remove the hot smaller pot or bowl, which now contains your distilled water.
  5. Storing distilled water: Pour the distilled water into a clean, sterilized container and store it in a cool, dark place to keep it pure.”

That makes sense and seems simple enough, but extremely time consuming. That’s why home water distillation systems exist. From many sites, I began to understand that this is not only slow, but expensive. However, it is a natural method of filtering water without, well, a filter.

Let’s get to the kidney part of the blog. We have chronic kidney disease. Is distilled water safe for us to drink? Alerna Kidney Health, while a business, offered some pretty good advice:

“Distilled water, known for its purity and absence of contaminants, has been examined for its impact on kidney health. It is important to note that there is limited research on the direct impact of distilled water on kidney function, and most kidney specialists recommend water containing natural minerals for general hydration and support of kidney health.

The lack of essential minerals in distilled water might make it less suitable for supporting the kidneys’ optimal function. Alternatives like tap water, bottled mineral water, or filtered water, which contain beneficial minerals, are often recommended.”

I discovered some surprises on WebMD:

“Distilled water lacks even electrolytes like potassium and other minerals your body needs. So you may miss out on a bit of these micronutrients if you drink only the distilled stuff.

Some studies have found a link between drinking water low in calcium and magnesium and tiredness, muscle cramps, weakness, and heart disease. Also, distilled water may not help you stay hydrated as well as other kinds of water.”

This is becoming more of an issue than I’d expected. Take a look at the benefits of drinking distilled water that MedicineNet has laid out for us:

“Drinking distilled water does have an upside. These potential advantages may include:

  • Cure Arthritis: Drinking water purified by distillation is believed by some to cure arthritis by washing out calcium and other minerals deposits in joints.
  • Reducing the risk of heart diseases:  Observational epidemiological studies have linked water hardness and cardiovascular disease risk. The hardness or softness of water is determined by the mineral content of both calcium and magnesium. When distillation eliminates these two, and the result is soft water.
  • Cleanses the body: Because distilled water is pure, it can detoxify the body and improve your health.
  • Prevents kidney stones: Kidney stones are hard deposits of minerals that form in the kidney and are painful when passing. Drinking distilled water prevents mineral build-up that can lead to kidney stone formation.
  • Prevents teeth discoloration: Distillation removes minerals from water, thus protecting your teeth from too much fluoride exposure, responsible for teeth discoloration.”

While there are benefits to drinking distilled water, the only one for the kidneys seems to be preventing kidney stones. Now this is a minor point, but as a coffee drinker, I think other coffee drinkers should know that it is not recommended to use distilled water to make coffee. It negatively affects the flavor of coffee… and foods.

Did you know that distilled water is used in dialysis machines? Healthline tells us it is usually used in the following, too:

  • “steam irons
  • aquariums (mineral supplements should be added to the fish food)
  • watering plants
  • car cooling systems
  • laboratory experiments
  • certain medical devices, such as continuous positive airway pressure (CPAP) devices for sleep apnea [and my BiPAP, as already mentioned]”

I’m not an authority, but if I were making the decision, I wouldn’t choose a distilled water system for my house. It would affect my cooking [rather Bear’s cooking] and coffee flavors. It also wouldn’t provide me with the electrolytes I need. I hope this helped.

Until next week,

Keep living your life!

So Silly!

For months, my daughter and I have been talking about what I thought was Jardiance. That’s a diabetes medication. For some unknown reason, I asked her to spell it. You’ll never guess. It wasn’t Jardiance at all. I was talking about Jardiance; she was talking about Janumet. While this is still a diabetes medication, it was neither the one I thought we were talking about, nor one I knew anything about. Silly of me, isn’t it? So, of course, Janumet became the topic of today’s blog.

Now, while we know diabetes is the foremost cause of chronic kidney disease, have you ever wondered why? In my very first book about kidneys, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I included the following information, which may be more than you ever wanted to know. [Hey, did you score your free copy of this book on New Year’s Day?]

“Thank you to the National Kidney Foundation for exactly the answer I was looking for:

  • 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. 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. Most often these infections affect the bladder, but they can sometimes spread to the kidneys.”

Okay then, time to turn to Medical News Today to find out what Janumet is.

“Janumet and Janumet XR contain the active ingredients sitagliptin and metformin. Janumet and Janumet XR are available only as brand-name medications. They’re not currently available in generic form.

Sitagliptin and metformin are available separately as generic medications. However, they aren’t available together as a combination generic drug.

A generic drug is an exact copy of the active ingredient in a brand-name medication. Generics usually cost less than brand-name drugs.”

Reminder: XR means extended release or slowly released into your body and long lasting. The opposite is IR or immediate release into your body and fast acting.

Let’s take the active [That means what makes the medication work.] ingredients one by one. This is from the Mayo Clinic:

“Sitagliptin helps to control blood sugar levels by increasing substances in the body that make the pancreas release more insulin. It also signals the liver to stop producing sugar (glucose) when there is too much sugar in the blood. This medicine does not help patients who have insulin-dependent or type 1 diabetes.”

Obviously not for me since I only have ¼ of my pancreas left after cancer surgery. I also noticed that a bunch of medications I take would also prevent from taking sitagliptin. Oh, it’s sold as Januvia. So it’s possible to use a sitagliptin only medication.

And Metformin? Medline Plus informs us:

“Metformin is used alone or with other medications, including insulin, to treat type 2 diabetes (condition in which the body does not use insulin normally and, therefore, cannot control the amount of sugar in the blood). Metformin is in a class of drugs called biguanides. Metformin helps to control the amount of glucose (sugar) in your blood. It decreases the amount of glucose you absorb from your food and the amount of glucose made by your liver. Metformin also increases your body’s response to insulin, a natural substance that controls the amount of glucose in the blood. Metformin 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).”

Wait a minute. What are biguanides? Let’s let the Cleveland Clinic explain:

“Biguanides (better known as metformin) are a type of oral diabetes medication that helps lower blood sugar levels for people with Type 2 diabetes. Healthcare providers prescribe this medication for other conditions, as well, like PCOS and gestational diabetes.”

Metformin is the only biguanide. Hmm, you can use medication that is solely metformin, just as you can use medication that is solely sitagliptin. Actually, I’m wondering why Metformin isn’t labeled biguanide. It is sold under five different brand names. And why isn’t sitagliptin sold as sitagliptin? This is confusing to me.

Anyway, finally, we arrive at Janumet, not the only diabetes medication to contain both Sitagliptin and Metformin. What is the benefit of taking both? Back to the Mayo Clinic for us:

“Metformin and sitagliptin combination is used to treat high blood sugar levels caused by type 2 diabetes. Metformin reduces the absorption of sugar from the stomach, reduces the release of stored sugar from the liver, and helps your body use sugar better. Sitagliptin helps to control blood sugar levels by increasing substances in the body that make the pancreas release more insulin. It also signals the liver to stop producing sugar (glucose) when there is too much sugar in the blood. This medicine does not help patients who have insulin-dependent or type 1 diabetes….”

In the words of a former student, “Ah, so it’s a double whammy!” I’d have to agree. Be sure to ask your nephrologist or endocrinologist if you’re interested in changing your medication.

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 canagliflozindapagliflozin 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!

My Kind of Gift

Someone who has been very active in the kidney community, and has even guest blogged, had some questions she wanted answered. Consider this blog my Christmas gift to her. Here’s hoping you all have a Merry Christmas, Happy Kwanzaa, and/or Boxing Day – whichever you observe. In our house, it’s Chanukah – which has already passed – and Christmas. We really don’t celebrate except when the children and grandchildren are here. The other times, we reminisce about the holidays when they were here. But I digress.

Have you ever heard of Norvasc? It’s one of the brand names for the generic amlodipine. Drugs.com tells us:

“Norvasc (amlodipine) belongs to a class of medications called calcium channel blockers. Amlodipine lowers blood pressure by relaxing the blood vessels so the heart does not have to pump as hard.

Norvasc is used to treat certain types of angina (chest pain) and other conditions caused by coronary artery disease (narrowing of the blood vessels that supply blood to the heart).

Norvasc controls chest pain by increasing the supply of blood to the heart. If taken regularly, amlodipine controls chest pain, but it does not stop chest pain once it starts. Your doctor may prescribe a different medication to take when you have chest pain.

Norvasc is also used alone or in combination with other medicines to treat high blood pressure (hypertension) in adults and children at least 6 years old. Lowering blood pressure may lower your risk of a stroke or heart attack.”

Notice that most of the definition deals with your heart and chest pain. That’s often the reason Norvasc is prescribed. Also note the last line of the definition which deals with high blood pressure. That’s why many kidney transplantees are taking this drug.

But there are other reasons for high blood pressure. One of them is arterial stenosis. I turned to the United Kingdom’s National Health Service for a clear explanation of how this works:

“Narrowing of the artery connected to the donated kidney, known as arterial stenosis, can sometimes happen after a kidney transplant. Sometimes, it can develop months, or even years, after the transplant.

Arterial stenosis can cause a rise in blood pressure. The artery often needs to be stretched to widen it, and a small metal tube called a stent may be placed inside the affected artery to stop it narrowing again.”

For some reason, this made me wonder if the donated organ had anything to do with rejection. I found some interesting information which deals with the donor kidney and high blood pressure on Science Daily,

“Cosio suspects that the condition of the blood vessels in a transplanted kidney affect’s [sic] the organ’s ability to regulate blood pressure.

Whenever a kidney is removed from a donor, the organ’s blood supply is momentarily lost, reducing the supply of oxygen to the blood-vessel cells and damaging them to some degree.

This is particularly true when the kidney comes from a person who has died and whose circulation is maintained artificially.

This subtle damage may then inhibit that kidney’s ability to efficiently maintain blood pressure following transplantation.

Looked at another way, high blood pressure after transplantation may sometimes reflect the degree of damage to the blood vessels of the kidney after it is removed from the donor, he said.

Cosio’s research was funded by grants from the National Institutes of Health.”

Cosio is “Fernando Cosio, professor of internal medicine at Ohio State University and leader of the study.”

Let’s backtrack a little to learn about rejection of the kidney. News Medical Life Science explains why immune suppression medications are needed.

“The immune system of the body perceives the kidney as a foreign object [Gail here: the new kidney, that is.] or tissue and mounts a reaction against it. This may lead to massive damage to the new kidney. Early signs of rejection include fever and soreness at the site of the new kidney and reduction in the amount of urine production. To prevent rejection reaction immune suppressing medications are prescribed right after the operation.”

Time for a recap to make sure we understand this process. Your native kidney fails. You place yourself on the list for a new kidney or find a compatible donor yourself. Testing begins for both you and your donor. You receive a new kidney [hopefully] either from a living donor or a deceased donor. You need to start taking anti-rejection medication, also called immunosuppressants, immediately. You may develop high blood pressure. You take medication for that, too. You may develop rejection of the donor kidney. This does not mean it will necessarily stop working, but it does mean the rejection requires medical treatment. By now, you are taking quite a few pills. If you miss even one dose, you can cause damage to the new kidney.

Now, please remember that I am not a doctor. I can research and rephrase what I find into reader friendly language, but that’s it. Your nephrologist and/or your transplant team are your best friends once you have a kidney transplant.

Let me leave you with this reminder: high blood pressure MAY lead to rejection, but that doesn’t necessarily mean that it will. There is treatment available should you start to reject that may stop that process. Our old friend, The Cleveland Clinic, elaborates:

“If your healthcare provider determines that a kidney rejection is occurring, they’ll adjust your prescription for immunosuppressant medication to prevent further complications. You may require additional medications or treatments for a short time, specifically for a rejection. Some people receive treatment for a rejection in a hospital for as long as five days. Others can receive treatment in an outpatient setting.

Since immunosuppressants, or antirejection medications, work by lowering (suppressing) your immune system to weaken how hard it can fight, treatment for a kidney rejection typically involves increasing the dosage of immunosuppressants….”

Until next week [or should I say next year?],

Keep living your life!

To Toast or Not to Toast

Happy Chanukah! With Chanukah here, Christmas can’t be far behind. And with Christmas almost here, we know Kwanzaa will be soon after. One thing all three celebrations have in common is libation – a drink.

I don’t drink, never have. I just don’t like the smell of liquor under my nose, nor the taste of it in my mouth [no judgement, folks]. Bear can’t drink due to the medications he takes. That got me to wondering since everything seems to have a connection to the kidneys, does having chronic kidney disease mean you can’t drink? I turned to the Mayo Clinic to begin my search for an answer. They stated the answer simply:

“Heavy alcohol consumption was associated with faster progression of CKD.”

Okay, that was succinct, but – being who I am – I had loads of questions about that statement. For instance, what is considered ‘heavy alcohol consumption’? The Centers for Disease Control defines it this way:

“Excessive drinking includes binge drinking, heavy drinking, and any drinking by pregnant women or people younger than age 21.

  • Binge drinking, the most common form of excessive drinking, is defined as consuming
    • For women, 4 or more drinks during a single occasion.
    • For men, 5 or more drinks during a single occasion.
  • Heavy drinking is defined as consuming
    • For women, 8 or more drinks per week.
    • For men, 15 or more drinks per week.

Most people who drink excessively are not alcoholics or alcohol dependent….”

Then I wondered, how much alcohol is considered one drink? I’m going to stick with the CDC since their explanation is a good one:

“In the United States, a standard drink contains 0.6 ounces (14.0 grams or 1.2 tablespoons) of pure alcohol. Generally, this amount of pure alcohol is found in

  • 12-ounces of beer (5% alcohol content).
  • 8-ounces of malt liquor (7% alcohol content).
  • 5-ounces of wine (12% alcohol content).
  • 1.5-ounces of 80-proof (40% alcohol content) distilled spirits or liquor (e.g., gin, rum, vodka, whiskey) ….”

As a non-drinker, I found this interesting, but I’m more interested in the alcohol/kidney connection. I figured the best place to start was The National Kidney Foundation:

“The kidneys have an important job as a filter for harmful substances. One of these substances is alcohol. The kidneys of heavy drinkers have to work harder. Alcohol causes changes in the function of the kidneys and makes them less able to filter the blood. Alcohol also affects the ability to regulate fluid and electrolytes in the body. When alcohol dehydrates (dries out) the body, the drying effect can affect the normal function of cells and organs, including the kidneys. In addition, alcohol can disrupt hormones that affect kidney function.

Too much alcohol can also affect your blood pressure. People who drink too much are more likely to have high blood pressure. And medications for high blood pressure can be affected by alcohol. High blood pressure is a common cause of kidney disease. More than two drinks a day can increase your chance of developing high blood pressure. Drinking alcohol in these amounts is a risk factor for developing a sign of kidney disease, protein in the urine (albuminuria). The good news is that you can prevent this by not drinking too much alcohol.”

My father and Zady [Yiddish for grandfather] used to have a drink or two of schnapps or Wild Turkey when they were together. Now I see why they kept it to a drink or two.

I stumbled upon the website for American Addiction Centers and was glad I did. I found even more about the connection between alcohol and the kidneys:

“Kidney disease has many causes that are not related to alcohol, but alcoholism is an undeniable factor in the development of kidney disease, especially because people who drink too much often have unhealthy lifestyles (e.g., not getting enough exercise, eating too much or too little, abusing other substances, etc.) that significantly increase the risk of kidney disease or failure. Other issues, like a family history of related conditions (not limited to kidney problems, such as obesity, heart and/or cardiovascular issues, high blood pressure, or genetics) make some people more inclined toward the development of kidney failure than others. Alcohol, whether in moderation or excess, exacerbates kidney problems to the point of actual kidney disease.”

But what does actually happen to the kidneys if you drink too much? Another addiction center, Gatehouse Treatment, got to the heart [You know I mean kidney] of the matter:

“Alcohol can also cause damage to the glomeruli, which are the tiny filters within the kidneys responsible for filtering waste and fluid. Once the glomeruli thicken with scars, the liver function impairment begins, and the condition may progress to chronic kidney disease. Additionally, there may be blood in the urine….

Chronic alcohol consumption can interfere with the kidneys’ ability to maintain acid-base balance, resulting in renal tubular acidosis. Your renal tubes stop secreting acid from the body, meaning your body quite literally becomes toxic. This functional breakdown can cause metabolic acidosis, leading to fatigue, weakness, vomiting, loss of appetite, bone abnormalities, and electrolyte imbalances.”

Yet again, I wanted to know more. The Recovery Village Columbus brought up a point I haven’t seen mentioned before:

“Alcohol affects how your brain releases a hormone called vasopressin, suppressing how much is released. Vasopressin directly acts on your kidneys, reducing urine production. When alcohol suppresses normal vasopressin levels, your kidneys will increase urine production to higher levels. High urine output (called diuresis) occurs, increasing strain on the kidneys by forcing them to alter their normal levels of function.”

I was hoping I’d be able to find something on this topic that Bear suggested the other day. Instead, I found myself working ridiculously hard to narrow down all the information I found so that the blog was coherent and informative. Surprise, surprise.

Until next week,

Keep living your life!

Keep Those Questions Coming, Folks!

Today we have another kidney disease and transplant awareness advocate’s question. I doubted I could answer this one. It has to do with renal transplant possibly causing the need for a gall bladder removal. It came about because two of the other kidney disease and transplant awareness advocates with kidney transplants recently both needed their gall bladder removed. Oh, wow, I think I did find an answer.

First, I thought you might enjoy an origin story. According to Indiana University School of Medicine:

“In a pivotal moment in medical history, Dr. John Stough Bobbs conducted the first documented gallbladder surgery back in 1869. This groundbreaking procedure took place in his third-floor office on the south side of Indianapolis, where he successfully removed stones from a 31-year-old woman who had suffered for four years.” 

So, how did we get from this to gall bladder removal and why is it performed? The University of California, San Fransico, Department of Surgery, Gastrointestinal Surgery tells us:

Cholecystectomy (Gallbladder Removal)

A cholecystectomy is a surgical procedure to remove the gallbladder, a small, pear-shaped organ located in the upper right abdomen—the area between the chest and hips—below the liver. The gallbladder collects and stores bile, a digestive fluid produced in the liver. Cholecystectomy may be required where there is pain from gallstones that block the flow of bile.“

Gallstones are not the only reason for a cholecystectomy. Healthline lays them out for us:

“Other conditions that could make you a candidate for gallbladder removal include:

I know. I know. What does this have to do with kidney transplant? A small study in the Annals of Transplantation explains:

“Cholelithiasis [Gail here. This means gallstones.]  is one of the most common gastroenterological diseases with a frequency of 10–15% in the general population …. The indications for cholecystectomy are symptomatic gallbladder stones; however, in diseases such as diabetes and sickle cell disease, and in patients undergoing solid organ transplantation [Gail here, like the kidneys], prophylactic removal of the gallbladder is nowadays considered …. The treatment of choice is laparoscopic cholecystectomy. It has been proven that in patients with end-stage chronic kidney disease (CKD) on hemodialysis or after kidney transplantation (KTx), the frequency of cholelithiasis increases [I bolded these words.] …. Moreover, patients after KTx receiving immunosuppression due to delayed diagnosis resulting from obscured symptomatology of inflammatory diseases and patients with decreased immune response may be at higher risk of complications of cholecystitis….”

Well, how is the gall bladder removed? The laparoscopic surgery mentioned above is performed like this:

“The surgeon makes a few small incisions on the right side of your abdomen (belly). The surgeon uses one incision to insert a laparoscope, a thin tube with a camera on the end. This shows your gallbladder on a screen. The gallbladder then gets removed through another small incision.”

Thank you to the Cleveland Clinic for that information. There is another option, which is called an open cholecystectomy. However, the recovery time is longer. The following information is from the Mayo Clinic:

“During an open cholecystectomy, the surgeon makes a 6-inch, or 15-centimeter, incision in your abdomen below your ribs on your right side. The muscle and tissue are pulled back to reveal your liver and gallbladder. Your surgeon then removes the gallbladder. The incision is closed, and you’re taken to a recovery area.”

It’s also suggested that having this surgery at the transplant center will lower the number of deaths. Allow me to introduce HBP Journal. Their website states:

HPB is an international forum for clinical, scientific and educational communication.

Now that we know who they are, this information from the journal becomes more important:

“… transplant recipients undergoing cholecystectomy experienced no significant increase in mortality compared to the general population. Overall KTx suffered a higher morbidity compared to the general population, but this increased morbidity was eliminated in transplant centers.”

I suspected that the immunosuppression drugs transplants need to take have something to do with the increased need for cholecystectomy in kidney transplants. Sometimes known as anti-rejection medications, Columbia Surgery states that they include:

Finally, Science Direct addresses our original question:

“One unique patient population at increased risk for need of cholecystectomy are kidney transplant recipients (KTR). KTR are at higher risk of developing gallstones and biliary disease than the general population due to their history of renal failure and immunosuppressive medications such as calcineurin inhibitors…. This risk, combined with improved post-transplant survival, translates to a higher incidence of cholecystectomy in the kidney transplant population.”

I have got to say that, when presented with the original question, I never expected to find an answer. Yet, Science Direct’s answer is clear and straightforward. Yes, a renal transplant can possibly cause the need for a cholecystectomy. A hearty thank you to Leesa Thompson for asking the question.

Until next week,

Keep living your life!

Now There’s Long Covid

Back in 2021, I wrote a bit about Covid. It’s even on Spotify as a podcast. But now, we have Long Covid. I thought it was time to write about that, but doubted there was much research. Boy, was I wrong! Of course, I only wanted to write about Long Covid and chronic kidney disease. Again, I thought narrowing the topic would leave me with little research. Again, I was wrong.

Let’s start at the beginning. Although Covid has been our constant companion for a bunch of years, let’s see exactly what it is [other than possibly fatal, that is]. If you remember way back in 2019, It was called Covid-19. The 19 refers to the year: 2019. Now for the covid part. That was originally referred to as Coronavirus Disease. It was cleverly shortened to: Co for Corona; Vi for virus; D for disease. Notice I am not citing any sources here. That’s because this is from my memory. I hope I got it right.

So, how did Covid begin? According to Northwest Medicine:

“Though initially discovered in Wuhan, China, in late 2019, COVID-19 entered the conversation in the U.S. in January 2020, when the Centers for Disease Control and Prevention (CDC) alerted the nation of the outbreak abroad. Later that month, the first national case of COVID-19 was reported in the state of Washington; by January 24, the virus had made its way to Chicago.

The outbreak escalated quickly from there, during a period of uncertainty about how the virus was transmitted, how quickly it could spread and how much of a threat it was to public health.

By March 2020, the World Health Organization (WHO) had declared COVID-19 a global health emergency and named the virus ‘severe acute respiratory syndrome coronavirus 2’ or ‘SARS-CoV-2.’ It was also in March that WHO officially declared the COVID-19 outbreak a pandemic.”

But now we have Long Covid. What is that? The American Medical Association [AMA] tells us:

“Most people recover from SARS-CoV-2, the virus that causes COVID-19, within a couple of weeks, but others may experience new or lingering symptoms, even after recuperating from COVID-19. Although, there is no universal clinical case definition for these lingering symptoms the CDC labels long COVID, also known as post-COVID conditions, as a wide range of new, returning or ongoing health problems people can experience four or more weeks after first being infected with SARS-CoV-2.”

Well, how does Covid affect the kidneys. I turned to Johns Hopkins Medicine for the possible answer:

“The impact of COVID-19 on the kidneys is complex. Here are some possibilities doctors and researchers are exploring:

Coronavirus might target kidney cells

The virus itself infects the cells of the kidney. Kidney cells have receptors that enable the new coronavirus to attach to them, invade, and make copies of itself, potentially damaging those tissues. Similar receptors are found on cells of the lungs and heart, where the new coronavirus has been shown to cause injury.

Too little oxygen can cause kidneys to malfunction

Another possibility is that kidney problems in patients with the coronavirus are due to abnormally low levels of oxygen in the blood, a result of the pneumonia commonly seen in severe cases of the disease.

Cytokine storms can destroy kidney tissue

The body’s reaction to the infection may be responsible as well. The immune response to the new coronavirus can be extreme in some people, leading to what is called a cytokine storm.

When that happens, the immune system sends a rush of cytokines into the body. Cytokines are small proteins that help the cells communicate as the immune system fights an infection. But this sudden, large influx of cytokines can cause severe inflammation. In trying to kill the invading virus, this inflammatory reaction can destroy healthy tissue, including that of the kidneys.

COVID-19 causes blood clots that might clog the kidneys

The kidneys are like filters that screen out toxins, extra water and waste products from the body. COVID-19 can cause tiny clots to form in the bloodstream, which can clog the smallest blood vessels in the kidney and impair its function.”

We need a definition of Long Covid before we continue.

“Long COVID, also known as Post-COVID Conditions (PCC), refers to the wide range of symptoms and conditions that some people experience four or more weeks after an initial infection by SARS-CoV-2, the virus that causes COVID-19. The symptoms and conditions, which may last for weeks, months, or years, can be persistent (meaning they developed during an acute COVID-19 illness and haven’t gone away), recurrent (meaning they may go away after the initial illness then return), or new (meaning they were not present initially but developed later).”

Thank you to Yale Medicine for the definition .

And CKD? What’s the connection with Long Covid? The National Institutes of Health’s The National Center for Biotechnology Information tells us:

“There is a bidirectional relationship between chronic kidney disease and COVID-19 disease. Chronic kidney diseases due to primary kidney disease or chronic conditions affecting kidneys increase the susceptibility to COVID-19 infection, the risks for progression and critical COVID-19 disease (with acute or acute-on-chronic kidney damage), and death. Patients who have survived COVID-19 face an increased risk of worse kidney outcomes in the post-acute phase of the disease. Of clinical significance, COVID-19 may predispose surviving patients to chronic kidney disease, independently of clinically apparent acute kidney injury (AKI).”

There is so much more information about CKD and Long Covid that I urge you to go to each of the links and poke around on that website. It’s amazing how much, yet how little, is known about Long Covid.

Let me leave you with this succinct information from the National Library of Medicine:

“… COVID-19 can directly infect kidney cells and induce cell injury with subsequent fibrosis [Gail here: that’s scarring.] …. data may explain both acute kidney injury and transition to chronic kidney disease in long-COVID-19.”

You couldn’t be more clear if your life depended on it… and it just might.

Until next week,

Keep living your life!

Dream a Little Dream with Me

It seems to me that I find answers to questions and solutions to problems in my dreams, usually just before I wake up. I suspect I’m not the only one. This week, my problem [for the first time in years] was the topic of today’s blog. The answer was IGA. I had no idea what that meant, so today we find out together.

Aha! It’s not IGA, which is the Independent Grocers Alliance, but IgA. It’s also known as Berger’s Disease after one of its two discoverers. That makes more sense since I don’t dream about groceries, but I do dream about kidneys. Johns Hopkins gave me the definition:

“IgA nephropathy is a chronic kidney disease. It progresses over 10 to 20 years, and can lead to end-stage renal disease. It is caused by deposits of the protein immunoglobulin A (IgA) inside the filters (glomeruli) in the kidney.”

I needed this definition broken down into little bits in order to understand it. Adding nephropathy to IgA put it in my ballpark. Nephro means kidney. Pathy means disease or disorder. Combine the two and you have a disease or disorder of the kidneys. IgA tells us which disease or disorder it is.

The definition tells us that IgA is a “protein immunoglobulin.” Great, what’s that mean? Immuno must be something to do with the immune system and globulin sounds like blood. Right? Let’s find out from a reliable source instead of relying on my knowledge of word roots. Healthline informs us that immunocompromised means:

“Immunoglobulins, also called antibodies, are molecules produced by white blood cells that help your body defend against infections and cancer. Their primary function is to bind to foreign cells like bacteria and viruses. This binding helps neutralize the foreign cell and signals to your white blood cells to destroy them.”

And protein? Thank you to MedlinePlus for this definition:

“Proteins are large, complex molecules that play many critical roles in the body. They do most of the work in cells and are required for the structure, function, and regulation of the body’s tissues and organs.”

Now it’s understandable. Add the two definitions and you get working antibodies. I think. Maybe that’s too simplistic a definition. At any rate, let’s see what these protein immunoglobins have to do with your kidneys. I turned to PennMedicine to see how the condition develops:

“IgA is a protein, called an antibody, that helps the body fight infections. IgA nephropathy occurs when too much of this protein is deposited in the kidneys. IgA builds up inside the small blood vessels of the kidney. Structures in the kidney called glomeruli become inflamed and damaged.

The disorder can appear suddenly (acute), or get worse slowly over many years (chronic glomerulonephritis).”

Of course, then I wanted to know who is at risk. Who better than the Cleveland Clinic to offer that information?

Photo by Min An on Pexels.com

So, how do you know if you have IgA Nephropathy? What are the symptoms? The Mayo Clinic lists possible symptoms for us:

“IgA nephropathy often doesn’t cause symptoms early on. You might not notice any health effects for 10 years or more. Sometimes, routine medical tests find signs of the disease, such as protein and red blood cells in the urine that are seen under a microscope.

When IgA nephropathy causes symptoms, they might include:

  • Cola- or tea-colored urine caused by blood. You might notice these color changes after a cold, sore throat or respiratory infection.
  • Blood that can be seen in the urine.
  • Foamy urine from protein leaking into the urine. This is called proteinuria.
  • Pain on one or both sides of the back below the ribs.
  • Swelling in the hands and feet called edema.
  • High blood pressure.
  • Weakness and tiredness.”

NephCure explains how this disease is diagnosed:

“The presence of blood or protein in the urine through a routine urinalysis is usually the first step in diagnosing IgA Nephropathy. Blood test for serum creatinine can be used to calculate glomerular filtration rate (GFR), which reads how well your kidneys are filtering wastes from the blood. To confirm a diagnosis, however, it is necessary to do a kidney biopsy.”

And now the biggie – how is this disease of the kidneys treated? The National Kidney Foundation offers the following:

  • Urine test: A urine test will help find protein and blood in your urine.
  • Blood test: A blood test will help find levels of protein, cholesterol, and wastes in your blood.
  • Glomerular filtration rate (GFR): A blood test will be done to know how well your kidneys are filtering the wastes from your body.
  • Kidney biopsy:  In this test, a tiny piece of your kidney is removed with a special needle, and looked at under a microscope. The kidney biopsy may show if you have a certain type of a protein that helps your body fight infection, called an IgA antibody, in the glomerulus.

You should know that IgA or IgAN [the N stand for nephropathy.] is an autoimmune disease. According to WebMD, this means:

Autoimmune diseases result when your immune system is overactive, causing it to attack and damage your body’s own tissues.

Normally, your immune system creates proteins called antibodies that work to protect you against harmful substances such as viruses, cancer cells, and toxins. But with autoimmune disorders, your immune system can’t tell the difference between invaders and healthy cells.”

I hope you’ve learned as much as I did from today’s blog. Sometimes, my dreams open up whole new worlds for me.

Until next week,

Keep living your life!

At the Heart of The Matter

A reader who is a blogger in her own right was asked this question by one of her readers. Since the question was not exactly in her field, she asked me if I would be able to write about it. Thank you, Leesa, and the answer is yes. Now, the question, “Why do heart and kidney diseases go together?”

The question reminded me that my cardiologist requests my presence annually, although I’ve never had a problem with my heart. He does an electrocardiogram and I chat. I like that my specialist takes such good care of me.

Wait a minute. Are you aware of how your heart works? How about a reminder? The National Institutes of Health’s National Institute of Heart, Lung, and Blood explains:

“The heart is an organ about the size of your fist that pumps blood through your body. It is made up of multiple layers of tissue.

Your heart is at the center of your circulatory system. This system is a network of blood vessels, such as arteries, veins, and capillaries, that carries blood to and from all areas of your body. Your blood carries the oxygen and nutrients that your organs need to work properly. Blood also carries carbon dioxide to your lungs so you can breathe it out. Inside your heart, valves keep blood flowing in the right direction.

Your heart’s electrical system controls the rate and rhythm of your heartbeat. A healthy heart supplies your body with the right amount of blood at the rate needed to work well. If disease or injury weakens your heart, your body’s organs will not receive enough blood to work normally. A problem with the electrical system — or the nervous or endocrine systems, which control your heart rate and blood pressure — can also make it harder for the heart to pump blood.”

You know, as long as we’re dealing with reminders, how about one dealing with the kidney’s function? Where better to find this information than the National Kidney Foundation:

“You have two kidneys, each about the size of an adult fist, located on either side of the spine just below the rib cage. Although they are small, your kidneys perform many complex and vital functions that keep the rest of the body in balance. For example, kidneys:

  • Help remove waste and excess fluid
  • Filter the blood, keeping some compounds while removing others
  • Control the production of red blood cells
  • Make vitamins that control growth
  • Release hormones that help regulate blood pressure
  • Help regulate blood pressure, red blood cells, and the amount of certain nutrients in the body, such as calcium and potassium.”

Keeping it simple, let’s take a look at “Filter the blood, keeping some compounds while removing others.” We were reminded at the beginning of today’s blog that “If disease or injury weakens your heart, your body’s organs will not receive enough blood to work normally. A problem with the electrical system — or the nervous or endocrine systems, which control your heart rate and blood pressure — can also make it harder for the heart to pump blood.”

This seems to indicate that only lower blood supply to the kidneys is a problem. But the electrical system controls blood pressure. Blood pressure and kidneys go together. So, does that mean that a heart problem can cause kidney disease?

Leesa very kindly included a website in the DM she sent me. According to The British Heart Foundation:

“Relatively recent research has shown that heart failure is a significant risk factor for kidney disease. When the heart is no longer pumping efficiently it becomes congested with blood, causing pressure to build up in the main vein connected to the kidneys and leading to congestion of blood in the kidneys, too. The kidneys also suffer from the reduced supply of oxygenated blood. 

When the kidneys become impaired, the hormone system, which regulates blood pressure, goes into overdrive in an attempt to increase blood supply to the kidneys. The heart then has to pump against higher pressure in the arteries, and eventually suffers from the increase in workload.” 

This reminds me of a closed system, one in the form of a loop. Heart, main vein, kidneys, arteries, heart. That high blood pressure is the second most common cause of kidney disease keeps running through my mine, too. This sounds terrible!

But, have hope. As you probably already know, this breaking down of the proper function of the heart and the kidneys can be treated. [I must admit that even though the original condition is called high blood pressure, it took me a long time to connect the heart to it, thinking only of the arteries.]

I discovered that the risk factors for chronic kidney disease are the same for congestive heart failure [CHF]. Yep: hypertension and diabetes. Diabetes? How? I turned to the Centers for Disease Control and Prevention:

“Over time, high blood sugar can damage blood vessels and the nerves that control your heart. People with diabetes are also more likely to have other conditions that raise the risk for heart disease.”

Don’t panic. Everything can be treated. You already know [or should] the medications you can take for CKD. They can also treat your heart. Healthline reminds us:

“Medications to lower high blood pressure and reduce fluid levels include diuretics, which make the kidneys excrete more sodium and fluids as urine.

Other blood pressure-lowering medications that may be prescribed include beta-blockers, which also help the heart beat more slowly and with less force, and ACE inhibitors.

Medications that help bring blood glucose levels into a healthy range include glucophage (Metformin) and other oral or injectable drugs.”

Since CHF may have different origins or be caused by another condition you suffer, there are other medications offered. In addition, diet and lifestyle changes may be helpful. If you already have CHF, but not CKD, speak with your doctor to discover its cause and how your particular kind of CHF can be treated. While this doesn’t guarantee that you won’t develop CKD due to your CHF, you’ll have a much better chance of avoiding the CKD.

Until next week,

Keep living your life!

I Checked This on a Whim

It looks like I’m on track for a hip replacement, as if pancreatic cancer weren’t enough to have happened to my poor body. I have this theory that everything is connected to the kidneys. That’s probably what’s kept me blogging for the last 13 years. But I thought a connection between hip replacement and the kidneys might be a little too far out. I researched anyway just for the sake of being thorough. Oh, my gosh! There is a connection. No kidding.

Since I didn’t know what was involved in a hip replacement, I speculated that you might not either. So, let’s take care of that before we get to its relation to the kidneys. The Institutes of Health’s National Institute of Arthritis and Musculoskeletal and Skin Diseases was extremely helpful here.

“Hip replacement surgery, or hip arthroplasty, is a surgical procedure in which an orthopaedic surgeon removes the diseased parts of the hip joint and replaces them with new, artificial parts. These artificial parts mimic the function of the normal hip joint….

The hip joint is a ball and socket joint and is one of the largest joints in the body. The upper end of the femur (thigh bone) meets the pelvis to create the joint. The ‘ball’ at the end of the femur is called the femoral head and fits into the ‘socket’ (the acetabulum) in the pelvis.

During a hip replacement, the surgeon makes an incision over the thigh and removes the diseased or damaged bone and cartilage from the hip joint. Next, the surgeon replaces the head of the femur and acetabulum with new, artificial parts. Surgeons have learned how to perform hip replacement with smaller incisions over time to limit the amount of trauma to the soft tissues.:

While that seems straightforward, there is a chance of Acute Kidney Injury [AKI] after this kind of surgery.
How? According to MedPageToday:

“Multiple mechanisms may contribute to postoperative kidney injury following total hip arthroplasty, including inflammation, use of potentially nephrotoxic medications such as angiotensin-converting enzyme inhibitor/angiotensin receptor blockers and nonsteroidal anti-inflammatory drugs, and also hemodynamic factors. Furthermore, risk factors that have previously been shown to be associated with postsurgical kidney injury include cardiovascular disease, diabetes, and creatinine above 2 mg/dL, along with obesity, metabolic syndrome, and perioperative antibiotic use.”

Uh-oh, I have diabetes, obesity, and metabolic syndrome. On the other hand, I sincerely doubt the surgeon will use nephrotoxic medications once I tell him I have chronic kidney disease.

What are the symptoms? How will I even begin to suspect I’ve developed AKI? The American Kidney Fund lays the symptoms out for us:

  • “Urinating (peeing) less often.
  • Swelling in your legs, ankles or feet.
  • Feeling weak and tired.
  • Feeling like you cannot catch your breath.
  • Feeling confused.
  • Feeling sick to your stomach.
  • Feeling pain or pressure in your chest.
  • Seizures or coma (in severe cases of AKI)”

Now I was worried about AKI following the hip replacement. I wanted to know what, if anything, I could do to avoid it. A trusted source, the Cleveland Clinic’s Journal of Medicine, offered some suggestions.

“Yes, there are ways to reduce the risk of acute kidney injury (AKI) after hip replacement surgery. According to a review article published in the Cleveland Clinic Journal of Medicine, some of the factors that increase the risk of AKI after primary total joint arthroplasty include older age, higher body mass index, chronic kidney disease, comorbidity, anemia, perioperative transfusion, aminoglycoside prophylaxis and treatment, preoperative heart murmur, and renin-angiotensin-aldosterone system blockade….

To reduce the risk of AKI after hip replacement surgery, you can consider the following measures:

  1. Avoid nephrotoxic medications: Avoid taking medications that can damage your kidneys. Your doctor will advise you on which medications to avoid.
  2. Stay hydrated: Drink plenty of fluids to maintain adequate intravascular volume.
  3. Avoid hypotension: Careful avoidance of medications that lead to hypotension.
  4. Effective comorbidity management: Effective management of comorbidities such as cardiac, vascular, pulmonary, renal, and diabetes ….
  5. Patient education: Educate yourself about the risks and preventive measures for AKI.”

For some reason, I was unnerved by how user-friendly these suggestions were. Just in case they didn’t work, I took a tentative peek at the results of what untreated AKI could be. Yale Medicine bluntly stated,

“If left untreated, AKI has a very high mortality rate. If the underlying cause is diagnosed and treated, your prognosis will depend on how much damage has been done to the kidneys.” 

I was really worried now and didn’t want to leave any AKI after the surgery untreated, not that I would have anyway.  It seems to me that I really need to speak to the surgeon. Who knows? Maybe they won’t even do the surgery since I’m stage 3b chronic kidney disease and type 2 diabetic. I found myself both a little scared and really annoyed that my appointment with the surgeon is not until the middle of next month, his earliest appointment.

Non surgery alternatives are not for me. I tried steroid injections to mask the pain and my blood glucose went through the roof. Unacceptable. The Spine and Pain Center of California listed even more reasons steroids may not be for you:

“According to a 2020 study, between 12 and 15 percent of American adults over 60 complain of hip pain. A steroid injection to treat this pain is often the first line of defense after conservative treatments have failed to work.

But for many people, this isn’t an effective solution. For one, steroid injections aren’t a long-term treatment, and many patients need continued shots over time to experience pain relief. Also, this treatment can potentially cause many concerning side effects. These may include:

  • Infection
  • Allergic reactions
  • Increase in blood sugar
  • Weakened tendons and ligaments
  • Cartilage damage
  • Nerve damage
  • Thinning of nearby bones”

The second line for non-surgery intervention is strong NSAIDS. You know why that’s out of the question, right? I have CKD, possibly even caused by NSAIDS. Then there’s physical therapy. I did try that, but it was so painful that the therapist and I agreed it wasn’t doing me any good. I really need that appointment.

Until next week,

Keep living your life!

Loyal Reader Asked

Loyal Reader is still very much around and still bringing up some unusual topics. [Bless him!] One he brought up months ago was HBM. There were a bunch of other topic requests before his, but there was also no way I was going to omit one of his topics. Ladies and Gentlemen, may I present hydroxy-beta-methylbutyrate. And, yes, that is English and it will be explained. Let’s begin with what it does and doesn’t do to our bodies.

“Supplementation with HMB will lead to an improvement in body composition, seeing this improvement from the first month of supplementation. Likewise, it will improve the levels of Prealbumin and IGF-1 as an anabolic hormone. To observe a greater effect on muscle mass with an HMB module…, regular physical activity should be prescribed, since a possible effect of supplementation without it, may only have the effect of slowing down catabolism.”

It’s clear that today’s blog will need a glossary of sorts, so here it is.

Anabolic:

1. Pertaining to a chemical reaction in which small 

molecules, such as amino acids, are combined to 

form larger molecules, such as proteins.

2. Of any substance that increases the rate of 

metabolism of a cell or organism.

3. Of a drug, such as a male sex hormone, that 

promotes body bulk. The Medical-Dictionary

Catabolism: “degradative metabolism involving the release of energy and resulting in the breakdown of complex materials (such as proteins or lipids) within the organism” Merriam-Webster [You didn’t think I’d ignore my favorite dictionary, did you?]  

HMB: “Suzette Pereira, PhD, an Abbott researcher specializing in muscle health, explains that HMB stands for beta-hydroxy-beta-methylbutyrate, and as scientific as that sounds, its purpose is easier to understand when you realize it’s been part of your diet for a long time.

HMB is naturally produced in small amounts when your body breaks down leucine, an essential amino acid that you can get through eating protein foods including milk and Greek yogurt, soybeans, beef and chicken. It can also naturally be found in very small amounts in foods like avocado, grapefruit, cauliflower and catfish. But it’s difficult to get amounts found to support muscle health just by diet alone and is often found in nutrition supplements.”

IGF-1: ”IGF-1 is a hormone that manages the effects of growth hormone (GH) in your body. Together, IGF-1 and GH promote normal growth of bones and tissues.” MedlinePlus

Prealbumin: “Prealbumin is a protein that is made mainly by your liver. Your body uses it to make other proteins. Prealbumin also carries thyroid hormones in the blood.” University of Rochester Medical Center.

Interesting, but I can just about hear you asking what all this has to do with chronic kidney disease. But first, I found some material about how HMB functions in connection with the kidneys:

“HMB, a water-soluble metabolite of leucine, is excreted in the urine and is not reabsorbed by the kidneys back into the bloodstream. Studies have shown that approximately half of the supplemented HMB is lost through urine. Since the kidneys don’t reabsorb HMB, dividing the daily HMB dosage into three separate doses throughout the day may help to maintain steadier levels of HMB in the blood and thereby enhance its effectiveness….”

Thank you, Examine.com. I did have a hard time finding any information about taking HMB with damaged kidneys, but this paragraph leads me to believe that damaged kidneys may not cause the HMB to be totally excreted from your body.

I was able to locate a positive conclusion from a study published in the BioMedical Journal of Scientific and Technical Research. There was only one problem; the study had a population of ONE person:

“Adequate nutritional advice together with an increase in physical activity, abandoning a sedentary lifestyle, constitute the necessary tools to preserve a good functionality in CKD patients. Weight loss together with an active life will favor the functional capacity of patients with CKD. Supplementation with HMB will lead to an improvement in body composition, seeing this improvement from the first month of supplementation. Likewise, it will improve the levels of Prealbumin and IGF-1 as an anabolic hormone. To observe a greater effect on muscle mass with an HMB module, as in our case, regular physical activity should be prescribed, since a possible effect of supplementation without it, may only have the effect of slowing down catabolism.”

Furthermore, Western New York Urology Associates warned, “However, full safety studies have not been performed, so HMB should not be used by young children, pregnant or nursing women, or those with severe liver or kidney disease, except on the advice of a physician.” Loyal Reader, take heed.

Photo by Nashua Volquez-Young on Pexels.com

That said, WebMd offered possible uses of HMB while also cautioning us of the lack of ‘good’ scientific validity of these uses:

“HMB might promote muscle growth. It can be found naturally in small amounts in grapefruit, alfalfa, and catfish. It’s also naturally made in the body.

People use HMB for building muscle or preventing age-related muscle loss. It’s also used for athletic performance, muscle loss due to HIV/AIDS, muscle strength, obesity, and many other purposes, but there is no good scientific evidence to support these uses.”

However, there is an alternative. That is to eat your HMB. VeryWellHealth tells us:

“You can obtain HMB from a few foods. Your body can also make HMB from leucine, which can also be found in foods.

HMB is produced by the body when leucine is broken down. You may be able to increase HMB by eating more foods that contain leucine.”

Foods like grapefruit, alfalfa, and catfish are said to contain HMB. However, these foods may only contain very small amounts of HMB.

Leucine is a part of most proteins and is more easily found in foods than HMB. Leucine is present in animal products in higher amounts than plant-based foods. You can find leucine in….

  • Beef
  • Pork
  • Chicken
  • Turkey
  • Dairy products
  • Fish
  • Legumes (beans, lentils, peas)
  • Grains (buckwheat, oats, millet)
  • Nuts (cashews, pine nuts, hazelnuts, almonds)
  • Certain fruits and vegetables

Here’s hoping there was enough pro and con re HMB for Loyal Reader – and anyone else considering the use of HMB – to make an informed decision.

Until next week,

Keep living your life!

ABCDEFGHIJKLMNOP

I bet you can figure out why I stopped at P. You’re right! That’s what I wrote about for today’s blog. But first, I wanted to know why it’s called pee. I grew up thinking the only word for it was urine. I turned to a very old friend, Etymonline, for the answer. It turns out my age had a lot to do with calling it urine as a youngster.

“pee (v.) [Gail here. V for Verb – an action word, experience, or condition]

1788, ‘to spray with urine’ …, euphemistic abbreviation of piss. Meaning ‘to urinate’ is from 1879. Related: Peedpeeing. Noun [Gail again. This is a person, place, thing, idea, or state of being] meaning ‘act of urination’ is attested by 1902; as ‘urine’ by 1961. Reduplicated form pee-pee is attested by 1923.

also from 1788

Entries linking to pee

piss (v.)

‘to urinate, discharge the fluid secreted by the kidneys and stored in the urinary bladder,’ c. 1300, pissen, from Old French pissier ‘urinate’ (12c.), from Vulgar Latin *pissiare, of imitative origin. To piss away (money, etc.) is from 1948. Related: Pissedpissing…. “

There was also a chart on the page showing when the word pee started becoming popular. It was in 1961 when I was already 14. By 2019, pee was the preferred word over urine.

And just why is pee so important to us? We’re chronic kidney patients, that’s why! Pee, or urine as I still call it, can tell us so much about what is going on with our kidneys. Did you notice in the definition of piss above that the phrase ‘secreted by the kidneys’ was used?

Let’s take a look at just what a urinalysis is and what it can tell us about the state of our bodies’ health. The Cleveland Clinic defines the test for us:

“A urinalysis (also known as a urine test) is a test that examines the visual, chemical and microscopic aspects of your urine (pee). It can include a variety of tests that detect and measure various compounds that pass through your urine using a single sample of urine.

Healthcare providers often use urinalysis to screen for or monitor certain common health conditions, such as liver diseasekidney disease and diabetes, and to diagnose urinary tract infections (UTIs)….”

I thought it would be best to separate the three parts of a urinalysis to examine each.  Let’s start with the visual aspect of the urine test. The National Kidney Foundation was helpful here.

“The urine will be looked at for color and clearness. Blood may make urine look red or the color of tea or cola. An infection may make urine look cloudy. Foamy urine can be a sign of kidney problems.”

This is something you are probably familiar with since all we need to do is look in the toilet bowl after urination to see if our urine is colored, cloudy, or foamy. Of course, I’m not suggesting that you do a visual urinalysis yourself. But you might notice something concerning. Then it’s time to call your doctor.

WebMD explained the purpose of the chemical aspect of a urine test:

Photo by Edward Jenner on Pexels.com

“A microscopic exam checks for things too small to be seen otherwise. Some of the things that shouldn’t be in your urine that a microscope can find include:

  • Red blood cells
  • White blood cells
  • Bacteria
  • Crystals (clumps of minerals, a possible sign of kidney stones)”

Finally, we come to the chemical aspects of your urine. You may be familiar with the term, ‘dipstick.’ [I realized that immediately made me think of checking the oil level in my car. Funny, but not apt for today’s blog. Still…] A strip of chemically sensitive paper is dipped into your urine. It turns different colors when the following is present:

  • Acidity (pH): This is the acid-base or pH level of your urine, which is measured on a scale of 1-14 with 1 being the most acidic and 14 being the most basic.
  • Bilirubin This is a substance produced when the body breaks down red blood cells. It is not normally found in the urine.
  • Concentration/specific gravity: This measures the concentration of particles in your urine and can be related to fluid levels in the body.
  • Glucose: This is a type of sugar that is used to provide energy to cells.
  • Enzymes: A dipstick test may check for the presence of an enzyme called leukocyte esterase that is found in white blood cells.
  • Ketones: These develop when the body uses fat instead of glucose for energy production.
  • Nitrites: These are a type of chemical produced when bacteria are present in the urinary system.
  • Protein: These molecules help the body carry out vital functions. Proteins are usually found in the blood and only in small amounts in the urine.
  • Blood cells: Dipstick tests can be used to look for evidence of blood and blood cells in the urine.”

Thank you to Testing.com for the above information. Oh, I was the one who italicized the word ‘kidneys’ in the source material above, not the author of the material.

We are CKD patients. We need to know what our urine can tell us. If you are also diabetic, like me, you doubly need to know what our urine tests can tell us about how well our kidneys are working. But what if you are a transplant? What good will a urine test do you then?

I found site after site explaining the research studies re urine test uncovering acute kidney transplant rejection, but no definitive information. I gather this is still being tested. Although the kidney biopsy is considered the golden standard for determining acute kidney transplant rejection, just as with kidney disease, the idea is that the quicker the problem is diagnosed, the quicker you can start treating it. My apologies to those who wanted something more definitive, but I cannot be more helpful here.  Perhaps one of you can?

Until next week,

Keep living your life!

Parkinson’s Revisited

It must be about six years since I wrote about Parkinson’s Disease [PD]and chronic kidney disease. It’s a biggie for me because both my brothers had this disease. One is now deceased. The other presently suffers Parkinson’s dementia. Hmm, three siblings: two with PD, one with CKD. Time to see what the connection, if any, is.

Last year, a study published in the American Journal of Managed Care [AJMC] stated:

“Reduced kidney function in patients with type 2 diabetes (T2D) may increase the risk of developing Parkinson disease (PD), according to study findings published in Parkinsonism & Related Disorders.

Affecting 1 in 11 adults worlwide [stet], T2D shares several pathophysiology [Gail here. That means disease or injury related disorder of the physiological processes.] similarities with PD, including mitochondrial dysfunction, endoplasmic reticulum stress, inflammation, and altered metabolism.”

If you’re anything like me, you need more of these terms defined. The Children’s Hospital of Philadelphia offers the definition of mitochondrial disorder:

“Mitochondrial disease, or mitochondrial disorder, refers to a group of disorders that affect the mitochondria, which are tiny compartments that are present in almost every cell of the body. The mitochondria’s main function is to produce energy. More mitochondria are needed to make more energy, particularly in high-energy demand organs such as the heart, muscles, and brain. When the number or function of mitochondria in the cell are disrupted, less energy is produced and organ dysfunction results.”

Once again, it’s clear that I’m not a doctor [and never have claimed to be one]. I am learning along with you. While I’d seen the term ’mitochondrial disorder’ before and thought I knew what It meant, I didn’t.

Okay, we need more definitions, don’t we? According to The National Library of Medicine endoplasmic reticulum stress [ER] is:

“ER stress occurs when the capacity of the ER to fold proteins becomes saturated.” 

As for altered metabolism, we know what altered means so let’s define metabolism. Thank you to my favorite dictionary, the Merriam-Webster:

“the sum of the processes in the buildup and destruction of protoplasm

specifically:the chemical changes in living cells by which energy is provided for vital processes and activities and new material is assimilated”

I have type 2 diabetes, so this study does mean something to me. It might mean something to you if you also have type 2 diabetes and CKD. I’m going to mention the study to my nephrologist when next I see him.

Something from a PubMed article caught my eye:

“However, neurological consequences are also attributed to this disease. Among these, recent large epidemiological studies have demonstrated an increased risk for Parkinson’s disease (PD) in patients with CKD.” 

Oh no, maybe I’ll come to PD from a different point of origin than those of my brothers. Come to think of it, I don’t know how they developed PD. Anyway, I don’t want to come to PD from any point of origin.

I wanted to know more, as usual. While not exactly what I’d been looking for the University of Florida Health made an interesting comparison between PD and CKD:

“This situation of a ‘threshold’ of cell loss that must be eclipsed for appearance of symptoms can be compared to what may occur in patients who experience kidney failure.  When a kidney begins to malfunction, approximately 75% or more of its cells are lost, and those cells are unrecoverable.  Frustratingly, for kidney failure failure [stet] patients, the routine laboratory tests are almost never abnormal, and only hint abnormality when the failure process has already begun.  In Parkinson’s disease, as in kidney failure, a ‘threshold’ of cells must be lost before one manifests symptoms.”

Never have I ever been so loathe at a possible comparison between my big brothers and me. It hit too close to home and, somehow, made me miss my brothers even more.

This is an except from a 2020 article by Melendez-Flores and Estrada Bellmann, neurologists at Autonomous University of Nuevo León in Mexico, on Springer:

“… we explored the association of CKD and PD and linked the components of the former to propose potential pathways explaining a future increased risk for PD, where renin-angiotensin system, oxidative stress, and inflammation have a main role.”

Wait a minute. Renin-angiotensin system? That sounds familiar. Britannica reminds us what it is:

“renin-angiotensin system, physiological system that regulates blood pressure.

Renin is an enzyme secreted into the blood from specialized cells that encircle the arterioles at the entrance to the glomeruli of the kidneys (the renal capillary networks that are the filtration units of the kidney). The renin-secreting cells, which compose the juxtaglomerular apparatus, are sensitive to changes in blood flow and blood pressure. The primary stimulus for increased renin secretion is decreased blood flow to the kidneys, which may be caused by loss of sodium and water (as a result of diarrhea, persistent vomiting, or excessive perspiration) or by narrowing of a renal artery.”

And this system has a main role in possible increased risk for PD???? This is getting too close for comfort. However, the same article concluded:

“More preclinical studies are needed to confirm the potential link of CKD conditions and future PD risk, whereas more interventional studies targeting this association are warranted to confirm their potential benefit in PD.”

I was glad to read that. Personally, I’m not willing to take on Parkinson’s in addition to my CKD and type 2 diabetes. Then again, is anyone? I hope I’ve both opened a new topic for you and put your mind at ease.

Until next week,

Keep living your life!

No Use Crying Over Spilled Milk, uh, I Mean Protein

A very active reader – who happens to be a transplantee – asked me to write about spilling protein. As a CKD patient, I’ve never been told I was doing that. However, one of my daughters was told she was spilling urine. She does not have chronic kidney disease. Hmmm.

Way back in 2020, I became interested in proteinuria simply because, while I knew the meaning of the word, I didn’t really know what the definition meant. In other words, I could break down the parts of the word [protein and urine] but didn’t get what they meant when combined. I found this information from The Mayo Clinic useful in helping me to understand:

“Protein in urine — known as proteinuria (pro-tee-NU-ree-uh) — is excess protein found in a urine sample. Protein is one of the substances identified during a test to analyze the content of your urine (urinalysis).

Low levels of protein in urine are normal. Temporarily high levels of protein in urine aren’t unusual either, particularly in younger people after exercise or during an illness.

Persistently high levels of protein in urine may be a sign of kidney disease.”

Oh, maybe this explained why my daughter was spilling protein into her urine. Perhaps she was ill or had just exercised before the test not realizing that would affect the results.

I wondered precisely what it was that healthy kidneys did do. The American Kidney Fund explained a bit more:

“Healthy kidneys remove extra fluid and waste from your blood, but let proteins and other important nutrients pass through and return to your blood stream. When your kidneys are not working as well as they should, they can let some protein (albumin) escape through their filters, into your urine. When you have protein in your urine, it is called proteinuria …. Having protein in your urine can be a sign of nephrotic syndrome, or an early sign of kidney disease.”

There’s another reason you don’t want to have proteinuria as WebMD clarifies:

“Protein is an important component of every cell in the body. Hair and nails are mostly made of protein. Your body uses protein to build and repair tissues. You also use protein to make enzymes, hormones, and other body chemicals. Protein is an important building block of bones, muscles, cartilage, skin, and blood.”

I thought I’d throw this tidbit in since I just spent two weeks writing about biopsies. 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 informs us:

““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.” 

Take a look at the second reason for having a biopsy.

I think it would make sense to learn how the kidney becomes so damaged that it allows protein, which is meant to return to the blood, to spill into the urine. I turned to the Cleveland Clinic to find out:

“Protein gets into the urine if the kidneys aren’t working properly. Normally, glomeruli, which are tiny loops of capillaries (blood vessels) in the kidneys, filter waste products and excess water from the blood. 

Glomeruli pass these substances, but not larger proteins and blood cells, into the urine. If smaller proteins sneak through the glomeruli, tubules (long, thin, hollow tubes in the kidneys) recapture those proteins and keep them in the body. 

However, if the glomeruli or tubules are damaged, if there is a problem with the reabsorption process of the proteins, or if there is an excessive protein load, the proteins will flow into the urine.” 

‘Excessive protein load’ That’s why our protein intake is limited. We do not want to overwork and possibly damage our kidneys by relying on a diet of burgers, chicken, steak, and salmon. This doesn’t mean you cannot have these or similar foods; simply that you need to limit them each day. Your nephrologist or renal dietitian will tell you how much protein per day is the right amount for you.

I wondered if that was the only cause of damaged kidneys. According to the Mayo Clinic, it’s not. There’s also:

  • “Type 1 or type 2 diabetes
  • High blood pressure
  • Glomerulonephritis (gloe-mer-u-low-nuh-FRY-tis), an inflammation of the kidney’s filtering units (glomeruli)
  • Interstitial nephritis (in-tur-STISH-ul nuh-FRY-tis), an inflammation of the kidney’s tubules and surrounding structures
  • Polycystic kidney disease or other inherited kidney diseases
  • Prolonged obstruction of the urinary tract, from conditions such as enlarged prostate, kidney stones and some cancers
  • Vesicoureteral (ves-ih-koe-yoo-REE-tur-ul) reflux, a condition that causes urine to back up into your kidneys
  • Recurrent kidney infection, also called pyelonephritis (pie-uh-low-nuh-FRY-tis)”

Remember, CKD is at least three months of your kidney function declining.

Since the question was asked by a transplantee, let’s see if there’s anything to add specifically for this group of people. New York based Nao Medical made it easy to understand:

“There are several factors that can contribute to the development of proteinuria in kidney transplant patients. These include:

  • Rejection of the transplanted kidney
  • Infection
  • Medications
  • High blood pressure
  • Diabetes”

Transplantees: Take note that rejection is not the only cause of proteinuria.

As for the treatment of proteinuria in transplantees, I am confused. I found research that stated Vitamin D would do the trick, others that recommended statins, and still other that said antihypertension drugs would help. I remind you that I am not a doctor and have never claimed to be one. In other words, speak with your nephrologist to discover which treatment is the best for your proteinuria.

I learned quite a bit today and hope you did, too.

Until next week,

Keep living your life!

Yet Another Connection

“So the foot bone connected to the leg bone,
The leg bone connected to the knee bone,
The knee bone connected to the thigh bone.”

So goes the Skeleton Song Dance from Walt Disney’s 1929 Silly Symphony. But did you realize that your organs are connected too? Maybe not physically, but what happens to one organ affects the others. For example, this week a dear friend mentioned a condition I’d never heard of before. So, of course, I wanted to know if it affects the kidneys? Or was it if the kidneys affect this condition?

It’s called lichen planus. Do you know it? Here’s how Johns Hopkins defines the condition:

“Lichen planus is a common disease that causes inflammation (swelling and irritation) on your skin or inside your mouth. On your skin, lichen planus causes a rash that is usually itchy. Inside your mouth, it may cause burning or soreness.”

I get the feeling there are more symptoms. According to the Cleveland Clinic, there are:

“Lichen planus symptoms depend on where it’s affecting your body:

  • Tiny, raised dots may develop on your skin, including your genitals. The dots are about the size of the tip of a pin (0.4 mm), and they may grow to the width of a pencil (1 cm). They may also develop into sores.
  • Tiny white dots may develop on the skin inside of your cheeks, your tongue or your lips.
  • Your nails may change colors, crack or split, stop growing or fall off.

Lichen planus doesn’t hurt. However, if you scratch your rash, you may break your skin, leading to an infection that can cause pain.”

That would explain why my friend had no idea she had this autoimmune disease. Wait a minute, what makes it an autoimmune disease? Maybe the American Institute of Healthcare Compliance can help us out here:

“The trigger of lichen planus is a hyperactive immune system. This condition occurs when the immune system begins to attack mucous membrane or skin cells which are not actually a threat to your body. This is an idiopathic condition, meaning there is no precisely known cause. However, medical professionals are aware of several conditions that may trigger it. “

“Trigger it”? I turned to eMedicineHealth to find out just what these triggers might be:

“Triggers for lichen planus may include: 

  • Certain medications
    • Antimicrobials
    • Antihistamines (H2-blockers)
    • Antihypertensives/antiarrhythmics such as ACE inhibitors and beta-blockers
    • Antimalarial drugs
    • Antidepressants/antianxiety drugs/antipsychotics
    • Anticonvulsants
    • Diuretics
    • Antidiabetics
    • Metals
    • Nonsteroidal anti-inflammatory drugs (NSAIDs)
    • Proton pump inhibitors (PPIs)
    • Lipid lowering drugs
    • Tumor necrosis factor-alpha antagonists
    • Monoclonal antibodies 
  • Metal dental fillings (oral lichen planus)
  • Stress
  • Infection, such as hepatitis C virus infection”

The one trigger that jumped out at me was mental dental fillings. My buddy and I are of an age when the only dental fillings available were metal. Could it really be that simple?

Something bothered me, though. It seemed to me that lichen planus was caused by too much of a good thing. The good thing was your immune system helped keep you healthy by fighting off foreign entities – like germs – in your body. A hyperactive immune system means it was working overtime and attacking parts of you that were necessary. Yep, too much of a good thing.

So, what do you do about lichen planus? By the way, my friend has the oral form. This is more prevalent in females and if there’s anything to be glad of about this disease it’s that it is most usually encountered in middle aged people. Hah! We are so far past middle age that it’s a compliment to be associated with anything middle aged…. or not.

Anyway, as to what you do about lichen planus, the answer is nothing. It usually disappears by itself within two years. I thought that weird and did my best to find out why. I drew a blank. So, let’s move on to what, if anything, this has to do with chronic kidney disease.

“OLP has been associated with numerous systemic connotations such as metabolic syndrome, diabetes mellitus, hypertension, thyroid diseases, psychosomatic ailments, chronic liver disease, gastrointestinal diseases, and genetic susceptibility to cancer.”

Thanks to the National Center for Biotechnology Information for the above, well, information.

Do you remember what metabolic syndrome is? Just in case, The National Heart, Lung, and Blood Institute explains:

“Metabolic syndrome is a group of conditions that together raise your risk of coronary heart diseasediabetesstroke, and other serious health problems. Metabolic syndrome is also called insulin resistance syndrome.

You may have metabolic syndrome if you have three or more of the following conditions.

  • A large waistline: This is also called abdominal obesity or ‘having an apple shape.’ Extra fat in your stomach area is a bigger risk factor for heart disease than extra fat in other parts of your body.
  • High blood pressure: If your blood pressure rises and stays high for a long time, it can damage your heart and blood vessels. High blood pressure can also cause plaque, a waxy substance, to build up in your arteries. Plaque can cause heart and blood vessel diseases such as heart attack or stroke.
  • High blood sugar: This can damage your blood vessels and raise your risk of getting blood clots. Blood clots can cause heart and blood vessel diseases.
  • High blood triglycerides: Triglycerides are a type of fat found in your blood. High levels of triglycerides can raise your levels of LDL cholesterol, sometimes called bad cholesterol. This raises your risk of heart disease.
  • Low HDL cholesterol, sometimes called good cholesterol: Blood cholesterol levels are important for heart health. ‘Good’ HDL cholesterol can help remove ‘bad’ LDL cholesterol from your blood vessels. ‘Bad’ LDL cholesterol can cause plaque buildup in your blood vessels.”

Knowing that diabetes and hypertension [high blood pressure] are the two leading causes of CKD, we can see the connection between lichen planus and CKD now. However, do not panic! This doesn’t mean you will definitely develop CKD.

Until next week,

Keep living your life!

Steroids… Again

Back in January, I wrote about steroids. Here’s a little basic information about them from Wordnik, the world’s largest online dictionary:

“Any of a group of steroid hormones, such as cortisone, that are produced by the adrenal cortex, are involved in carbohydrate, protein, and fat metabolism, and have anti-inflammatory properties.” 

I can just about hear you thinking, “You already wrote about steroids. Why write about them again?” The truth of the matter is that while I did write about steroids before, that blog had a different focus. Then, I focused on what they are. Today, I’ll be focusing on how long-term use of steroids affects the kidneys. Why? You guessed it. One of my very favorite readers asked me to. This is her email:

“I am 82. Full of osteoarthritis. Have had at least 20 surgeries for this disease. At my age, I no longer am a good candidate for more orthopedic surgeries. I also have stage 3b CKD. My drs are willing to inject me with steroids to help minimize the pain. 

I don’t think one injection would necessarily hurt me but what about many injections (at different times). My gut is telling me to do some research. 

I am reaching out to you.”

Of course, we’ll be referring to artificial steroids rather than those your body produces naturally. Sometimes, that’s just not enough to deal with inflammation. But I also want to make certain that you realize the steroids I’m writing about are not the anabolic steroid weightlifters may be using.

Not to frighten you, but more to get it out of the way, we need to know the possible side effects of steroids. eMedicine Health [owned by WebMD] has plenty to say about side effects:

“Get emergency medical help if you have signs of an allergic reaction: hives; difficult breathing; swelling of your face, lips, tongue, or throat. 

Call your doctor at once if you have: 

  • (after injection into a joint space) increased pain or swelling, joint stiffness, fever, and general ill feeling; 
  • blurred vision, tunnel vision, eye pain, or seeing halos around lights; 
  • unusual changes in mood or behavior; 
  • swelling, rapid weight gain, feeling short of breath; 
  • stomach cramps, vomiting, diarrhea, bloody or tarry stools, rectal irritation; 
  • sudden numbness or weakness (especially on one side of the body); 
  • a seizure (convulsions); 
  • severe headache, blurred vision, pounding in your neck or ears; 
  • increased pressure inside the skull–severe headaches, ringing in your ears, dizziness, nausea, vision problems, pain behind your eyes; or 
  • Signs of low adrenal gland hormones–flu-like symptoms, headache, depression, weakness, tiredness, diarrhea, vomiting, stomach pain, craving salty foods, and feeling light-headed. 

Certain side effects may be more likely with long-term use or repeated doses of triamcinolone injection.“

It’s almost enough to make you forget the whole idea of taking steroids for your pain and inflammation, especially long term. But, as we all know, these are possible side effects and, I suspect, not that common.

Let’s see what more we can find about a long-term regime of steroids. According to the National Kidney Organization:

“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.”

Wait a minute. So, you can reduce inflammation and swelling long term, but you’re lowering the body’s defense system. Then how can a doctor, in good consciousness, prescribe this regime?

I turned to Drugs.com for help. Oh, my.

“Long-term use of prednisone may lead to bone loss and osteoporosis. It can cause changes in the distribution of body fat which together with fluid retention and weight gain may give your face a moon-like appearance.

Stretch marks, skin thinning, and excessive facial hair growth are also not uncommon. Women who are pregnant or planning a pregnancy should let their doctor know before they take prednisone. Prednisone may be given in low doses to women who are breastfeeding a baby for the treatment of certain conditions such as asthma, rheumatoid arthritis, inflammatory bowel disease, or for an allergic reaction.

Children are particularly susceptible to prednisone’s side effects. Prednisone may suppress growth and development, an unfortunate effect that may be helped by alternate day treatment or growth hormone therapy. Prednisone may also cause sleeplessness and affect your moods. People with diabetes may find their blood glucose control is not as good as it usually is while they are taking prednisone.”

As of that weren’t enough, GoodRxHealth tells us:

“Here are nine possible effects of long-term corticosteroid [a type of steroid] use.

1. Weight gain….

2. Osteoporosis and fractures….

3. Infection risk….

4. Cataracts and glaucoma….

5. High blood pressure and heart disease….

6. Blood sugar….

7. Stomach problems….

8. Sleep and mental health problems….

9. Steroid withdrawal….”

Just about every website I searched stated that prolonged steroid use could be harmful to the kidneys. And then, don’t forget the high blood pressure and blood glucose problems [High blood sugar for prolonged period is diabetes.] are the two leading causes of chronic kidney disease.

You must remember that I am not a doctor, but I am getting a bit nervous about this. I know steroids are used as anti-rejection drugs in kidney transplant and that’s a good thing. But without a transplant? The University of North Carolina’s Kidney Center surprised me:

“Corticosteroids are used to treat a variety of inflammatory diseases. Kidney diseases treated with this medication include lupus nephritis, systemic vasculitis, and other forms of glomerulonephritis.”

None of which this reader has. One thing we must keep in mind is that doctors will often prescribe medications with possible negatives for the patient because they feel this particular medication will do more good than harm for the patient.

I’d recommend a more in-depth conversation with the doctor who wants to prescribe steroids before either agreeing or refusing. Readers, what do you think?

Until next week,

Keep living your life!

Crazy Glue to the Rescue

Okay, so it’s not exactly crazy glue. Then what is it you ask? I’ll let Center for Vascular Diseases explain what it is:

“The most recent innovation in the treatment of varicose veins is the use of medical glue known as VenaSeal (cyanoacrylate) to physically shut down and seal the main defective vein.

VenaSeal Adhesive (Glue), previously known as Sapheon Glue medical grade glue that is used to shut the main saphenous vein in the thigh. Once the vein has been glued shut, it will undergo a process of hardening (sclerosis) and will be gradually absorbed by the body. The procedure is minimally invasive.”

I didn’t know what saphenous meant so I turned to my – you guessed it – favorite dictionary, Merriam-Webster:

“of, relating to, associated with, or being either of the two chief superficial veins of the leg.”

You’ve probably caught on already that this relates to last week’s blog about leaky veins. I somehow missed this option to repair them. Thanks to my friend’s email about his upcoming procedure, we all know about this not-so-crazy glue now.

But, as usual, I needed more information. Medtronic told me that before the procedure,

“You will have an ultrasound imaging exam of the leg being treated. This exam is important for assessing the diseased superficial vein and planning the procedure.”

Let me remind you that an ultrasound is basically a non-invasive look into the body.

Side note. It turns out I’m not the only one comparing VenaSeal to crazy glue. This is what Inovia Vein Specialty Centers had to say:

“One of the new advances in the treatment of varicose veins is the use of adhesives to close off leaky veins. This procedure is called VenaSeal, which the FDA approved in 2015…. A surgical adhesive similar to super glue is used to close the vein.”

So, we’ve had our ultrasound. Now what? Vein Health Medical Clinic had a succinct response to that question:

“The VenaSeal procedure involves the placement of a very small amount of VenaSeal vein glue into the vein through a small catheter. Once the affected vein is closed, blood is immediately re-routed through other healthy veins in the leg. Unlike other treatments, VenaSeal does not require a regional nerve block or large volumes of anaesthesia. Furthermore, there are no pre-procedures drugs involved and patients can return to their normal activities right after the treatment. Unlike heat-based procedures such as endovenous laser or radiofrequency ablation, with VenaSeal there is no risk of skin burns or nerve damage. VenaSeal does not require any immediate post-treatment pain medication or uncomfortable compression stockings.”

Now I find myself wondering about any other after care if neither pain medication nor compression stockings were going to be necessary. I found Bass Vein Center’s instructions a bit surprising:

“You’ll be able to resume all your normal activities immediately following your VenaSeal procedure. To hasten your recovery, your doctor will recommend that you engage in physical exercise like walking, biking, basketball, soccer that promotes healthy blood flow in the legs. You should avoid lifting heavy weights and standing for long periods for 5 to 7 days after the treatment to make sure the vein stays sealed off.

After a few weeks, the varicose vein will begin to fade, and eventually disappear.

Your vein doctor will schedule a checkup four weeks after the procedure to ensure the vein has properly healed.”

I was convinced there was more to it. Desert Vein and Vascular Institute agreed, but it was nothing earth shattering:

“For the first week following your VenaSeal procedure, it will be important to avoid heavy lifting, certain types of strenuous activity – particularly standing activities, and use of hot tubs while the treated veins fully close and the treated areas heal. This is because it takes about five to seven days for the adhesive to form to the dimensions of the vein and completely occlude blood flow.”

What I’d really been interested in was whether it would be a painful recovery. Atlas Vein Care suggests the following:

“Pain Relief After Treatment (Over The Counter): Motrin/ Advil (ibuprofen 200mg- take 3 tablets every 8 hours with food) OR Aleve (naproxen 225mg-take 2 tablets every 12 hours with food). You will be encouraged to use one of these medications on a daily basis for 1 to 2 weeks after treatment even if you are not hurting. Why? Because it helps reduce inflammation and pain that might sneak up on you a few days after your treatment.”

Uh-oh. That presents a problem for chronic kidney disease  patients. We cannot take NSAIDS. Guess what Motrin, Advil, ibuprofen, and Aleve are. That’s right, NSAIDS. I think our usual Tylenol will do the trick. So does the Center for Vein Restoration:

“If you need to take something for pain, we recommend starting with 400mg of Ibuprofen every 6-8 hours with food. If you cannot take non-steroidal anti-inflammatory drugs due to an allergy or other medical condition, take Tylenol, up to 500mg every 12 hours.”

Of course, leaky veins have more to do with CKD than just making sure you take Tylenol rather than NSAIDS. This is what I wrote about the connection last week:

Comprehensive Vascular Care explains:

“Your two kidneys use structures called ‘nephrons’ to filter out excess water and waste products from the blood, which they combine to form urine. By controlling fluid balance, they also control the levels of sodium, potassium, phosphorus, and calcium in the body as a whole.

For the process to work effectively, the kidneys must receive adequate blood flow under proper pressure. If the arteries leading to the kidney are diseased, such as with peripheral artery disease, or blood flow becomes sluggish, such as with chronic venous insufficiency, the kidneys won’t be able to function properly…

Damage to the tiny filtering nephrons can result in what’s called nephrotic syndrome; declining levels of the protein albumin in your blood and increasing levels in the urine can cause fluid to build up and result in edema, most commonly around the ankles and feet. A healthy kidney doesn’t let albumin enter the urine.”

Until next week,

Keep living your life!

Curiouser and Curiouser [as Alice said]

I got curious about something this past week. For some unknown reason, ADHD kept popping up in my life. This one would tell me her grandson was just diagnosed with it or that one would ask me what I knew about it. Considering I knew next to nothing about ADHD and that chronic kidney disease seems to be at the center of my knowledge, I began to wonder if there were any connection between the two.

What’s ADHD, you ask? Here’s how the National Institute of Mental Health explains it:

“Attention-deficit/hyperactivity disorder (ADHD) is marked by an ongoing pattern of inattention and/or hyperactivity-impulsivity that interferes with functioning or development. People with ADHD experience an ongoing pattern of the following types of symptoms:

  • Inattention means a person may have difficulty staying on task, sustaining focus, and staying organized, and these problems are not due to defiance or lack of comprehension.
  • Hyperactivity means a person may seem to move about constantly, including in situations when it is not appropriate, or excessively fidgets, taps, or talks. In adults, hyperactivity may mean extreme restlessness or talking too much.
  • Impulsivity means a person may act without thinking or have difficulty with self-control. Impulsivity could also include a desire for immediate rewards or the inability to delay gratification. An impulsive person may interrupt others or make important decisions without considering long-term consequences.”

How could such a disorder have anything to do with CKD? Poking around on the internet, I found article after article that seemed to suggest there is a connection. Frankly, they were too scientific for me to follow. I kept going. Now I really wanted to know if there were a connection. Give me an obstacle, and it will just make me dig deeper.

Finally, I did find something I understood in Nephrology New & Issues:

“Additionally, children with CKD were 32% more likely to be diagnosed with CKD, 3% more likely to be diagnosed with ADHD and 28% less likely to be diagnosed with anxiety compared with children of the general population.”

Photo by Luna Lovegood on Pexels.com

Come to think of it, all the articles I looked at dealt with children. While 3% doesn’t sound like a lot, that’s 3% more likely to have ADHD than children without CKD.

Most of the information I found had to do with AHDH medications and the kidneys. WebMD clarified:

“Most people who take medication for attention deficit hyperactivity disorder (ADHD) take a drug called a stimulant. Adderall and Ritalin are both in that category. They help control levels of two chemicals in your brain, dopamine and norepinephrine, that affect how well you concentrate.

Studies show that stimulants work well on ADHD symptoms for about 80% of people who take them. About half of those people get the same results from either Adderall or Ritalin. But for the other half, one drug works better than the other. This is because they work in different ways and can cause different side effects.”

Sounds like plausible… until you read this list of Adderall’s common side effects from RxList:

“nervousness

or

  • cold feeling in your hands or feet.”

We already know how important sleep is to CKD patients and, as for increased blood pressure, that’s the second most common cause of CKD.

Recovery Village was a lot more direct:

“The FDA recently approved labeling changes for ADHD drugs and added rhabdomyolysis to the list of possible adverse side effects. This is a condition that causes the breakdown of muscle fibers. When this happens, a protein called myoglobin is released, which damages kidneys while they attempt to filter it from the blood.

Some of the symptoms of rhabdomyolysis include:

  • Tenderness
  • Pain
  • Spasms
  • Stiffness
  • Muscle cramps

When someone suffers from rhabdomyolysis, it can cause kidney damage and kidney failure. In some instances, if there is kidney damage or failure due to long-term Adderall use or an Adderall overdose, a person may require dialysis or a kidney transplant.

Experiencing kidney pain after large amounts of this drug or over long-term use may be a sign of this serious side effect.”

From a multitude of websites, it became clear that Ritalin also can cause high blood pressure. It’s not the Ritalin itself that affects the kidneys, but the high blood pressure. I found other stimulants used to treat ADHD, but each one warned they may cause high blood pressure.

Don’t lose hope just yet if you have both ADHD and CKD. I found a bunch of non-stimulant ADHD medications that don’t raise blood pressure. I found them on ADDitudes’s website. A website specifically for ADHD patients. I’ve listed their side effects below:

“….. The most common side effects of Strattera include decreased appetite, nausea, vomiting, fatigue, dyspepsia (indigestion), dizziness, and mood swings….

The most common side effects of Intuniv are sleepiness, dry mouth, tiredness, difficulty sleeping, nausea, stomach pain, dizziness, irritability, slow heart rate, and low blood pressure….

The most common side effects of Kapvay are tiredness, cough, runny nose, sneezing, irritability, sore throat, nightmares, change in mood, constipation, increased body temperature, and ear pain….

The most common side effects of Qelbree include drowsiness or somnolence, decreased appetite, fatigue, nausea, vomiting, trouble sleeping, irritability. Qelbree may also increase suicidal thoughts and actions.”

Wow! Not only is there a connection between ADHD and CKD, but a number of medications used to treat it can affect your kidney disease. Never fails to amaze me how much more there is to learn about chronic kidney disease.

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. 
  1. The design is simple and informative. 
  1. It’s the first one I’ve seen that’s video compatible!   
  1. Every person who registers gets up to five free t-shirts, which will automatically be shipped to you. 
  1. You’ll receive a QR code via email which you can use on billboards, yard sides, and business cards.  
  1. 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 1st and 3rd 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! 

We Know It Does, But How? 

After all these years of reading my blog, I’m certain we all know that diabetes is the foremost cause of chronic kidney disease. But did you ever ask yourself how diabetes causes CKD? That would be a good thing to explore during National Kidney Month, so let’s do it. 

Let me first remind you that CKD is: 

“Damage to the kidneys for more than three months, which cannot be reversed but may be slowed” 

That’s from my first book, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease, which was published in 2011… a dozen years ago.  

Do you remember what KDIGO stands for? It means Kidney Disease Improving Global Outcomes, which is  

“… the global nonprofit organization developing and implementing evidence-based clinical practice guidelines in kidney disease…. KDIGO guidelines translate global scientific evidence into practical recommendations for clinicians and patients.” 

Their latest definition of CKD is: 

“CKD is defined as abnormalities of kidney structure or function, present for > [that means greater than] 3 months, with implications for health….” 

11 years later, the definition of CKD is not that much different. 

And diabetes? How should we define that? The National Institute of Diabetes and Digestive and Kidney Disease [NIDDK] has us covered there: 

“Diabetes is a disease that occurs when your blood glucose, also called blood sugar, is too high. Blood glucose is your main source of energy and comes from the food you eat. Insulin, a hormone made by the pancreas, helps glucose from food get into your cells to be used for energy. Sometimes your body doesn’t make enough—or any—insulin or doesn’t use insulin well. Glucose then stays in your blood and doesn’t reach your cells. 

Over time, having too much glucose in your blood can cause health problems. Although diabetes has no cure, you can take steps to manage your diabetes and stay healthy.” 

That still doesn’t tell us how diabetes affects your kidneys, does it? The Centers for Disease Control and Prevention [CDC] helps a little: 

“Each kidney is made up of millions of tiny filters called nephrons. Over time, high blood sugar from diabetes can damage blood vessels in the kidneys as well as nephrons so they don’t work as well as they should. Many people with diabetes also develop high blood pressure, which can damage kidneys too. 

CKD takes a long time to develop and usually doesn’t have any signs or symptoms in the early stages. You won’t know you have CKD unless your doctor checks you for it.” 

We are getting close, but I don’t think we’re there yet. Bingo! MedlinePlus nailed it: 

“In people with diabetes, the nephrons slowly thicken and become scarred over time. The nephrons begin to leak, and protein (albumin) passes into the urine. This damage can happen years before any symptoms of kidney disease begin.” 

Kidney Care UK offers us even more information: 

“Diabetes can affect your kidneys in two main ways: 

Kidney disease (diabetic nephropathy). High glucose levels cause extra blood to flow through the tiny filters in your kidneys, so they have to work harder than normal to clean it. Over time this can damage the filters, causing them to leak. 

Disease of the kidney’s blood vessels (renovascular disease). High blood pressure causes a ‘furring up’ of the artery to the kidney, reducing the blood supply and causing scarring.” 

So now we have two places in our bodies that diabetes affects, the nephrons [filters] in the kidneys and the arteries leading to the kidneys. That explains why high blood pressure is the second foremost cause of chronic kidney disease. 

I tuned to the Mayo Clinic to see if there were any symptoms to warn us of the damage being done to our kidneys: 

“In the early stages of diabetic nephropathy, you would most likely not notice any signs or symptoms. In later stages, signs and symptoms may include: 

  • Worsening blood pressure control 
  • Protein in the urine 
  • Swelling of feet, ankles, hands or eyes 
  • Increased need to urinate 
  • Reduced need for insulin or diabetes medicine 
  • Confusion or difficulty concentrating 
  • Shortness of breath 
  • Loss of appetite 
  • Nausea and vomiting 
  • Persistent itching 
  • Fatigue” 

Maybe this would be a good time to differentiate between the types of diabetes. The most logical site to have this information would be EndocrineWeb … and it did: 

“Type 1 Diabetes 

This type is usually diagnosed in kids, teens, and young adults, but it can happen at any age. Type 1 diabetes occurs when your pancreas doesn’t make insulin. This means you have to take insulin every day. The Centers for Disease Control and Prevention (CDC) estimates that around 5% to 10% of people with diabetes have this type…. 

Type 2 Diabetes 

This type can also show up at any age, but it’s more common if you’re over 40. Type 2 diabetes occurs when your pancreas doesn’t make enough insulin, or your body isn’t using the insulin well. Around 90% to 95% of people with diabetes have this type. While it has historically affected mainly adults, the rate of type 2 diabetes in children and adolescents is rising…. 

Gestational Diabetes (Diabetes in Pregnancy) 

During pregnancy, some women who did not previously have diabetes develop it. This is called gestational diabetes. It usually disappears after the baby is born, but having gestational diabetes increases both your and your baby’s risk of developing type 2 diabetes later on.  

Prediabetes 

As the name suggests, prediabetes increases your risk of developing type 2 diabetes. In this stage, your blood sugar levels are higher than they should be, but not high enough to be diagnosed with type 2. The CDC says that 96 million adults in the United States have prediabetes. That’s more than a third of adults. Unfortunately, more than 84% don’t know they have it. 

When most people think of diabetes, they only think of type 1 and type 2. I knew about gestational diabetes only because one of sisters-in-law experienced it [Yes, unfortunately her son does have diabetes now.] I also had prediabetes and was doing a pretty good job of not allowing it to progress, if I do say so myself. However, losing ¾ of my pancreas to cancer threw me right into type 2 diabetes. 

Time for me to take my insulin. 

Until next week, 

Keep living your life! 

Clearing Out 

I’m pretty sure you’ve all heard about clearing out the clutter in your home by now. Apparently, clutter is the newest enemy of the home. Marie Kondon has written a best seller about it and even has her own show concerning clutter clean out. So, maybe we can presume that clearing out is important to our lives. 

Today, we’ll be looking at a different kind of clutter clearing. It has to do with a colonoscopy. For those, ah, younger readers who are not yet acquainted with the term, a colonoscopy needs an uncluttered colon.  

The Mayo Clinic informs us that: 

“A colonoscopy (koe-lun-OS-kuh-pee) is an exam used to look for changes — such as swollen, irritated tissues, polyps or cancer — in the large intestine (colon) and rectum. 

During a colonoscopy, a long, flexible tube (colonoscope) is inserted into the rectum. A tiny video camera at the tip of the tube allows the doctor to view the inside of the entire colon. 

If necessary, polyps or other types of abnormal tissue can be removed through the scope during a colonoscopy. Tissue samples (biopsies) can be taken during a colonoscopy as well.” 

I’ve got to admit my first reaction to the thought of a colonoscopy is, “Why would anyone want to subject themselves to such a procedure? MedicalNewsToday answers that question. 

“A colonoscopy is the main way in which doctors investigate lower gastrointestinal symptoms, such as: 

  • bleeding from the rectum 
  • chronic constipation 
  • chronic diarrhea 
  • stomach pain 

The medical community also considers colonoscopy the gold standard of screening for colorectal cancer. This type of cancer is one of the most common types in both males and females in the U.S. 

A colonoscopy can detect early stage colorectal cancer before symptoms develop. Early detection can improve treatment outcomes. 

A doctor may recommend a colonoscopy for those who: 

  • have a first degree relative with a history of colon polyps or colon cancer 
  • are at higher risk due to their personal medical history 
  • are aged 50 or older, even if no other risk factors are present” 

Bear and I are both over 50. Let’s make that well over 50. Our recent colonoscopies were not our first rodeos, so to speak. 

Let’s allow The National Institue of Diabetes and Digestive and Kidney Disease [NIDDK] to describe the procedure for us. 

“A doctor performs a colonoscopy in a hospital or an outpatient center. A colonoscopy usually takes 30 to 60 minutes. 

A health care professional will place an intravenous (IV) needle in a vein in your arm or hand to give you sedatives, anesthesia, or pain medicine, so you won’t be aware or feel pain during the procedure. The health care staff will check your vital signs and keep you as comfortable as possible. 

For the procedure, you’ll lie on a table while the doctor inserts a colonoscope through your anus and into your rectum and colon. The scope inflates your large intestine with air for a better view. The camera sends a video image to a monitor, allowing the doctor to examine your large intestine. 

The doctor may move you several times on the table to adjust the scope for better viewing. Once the scope reaches the opening to your small intestine, the doctor slowly removes the scope and examines the lining of your large intestine again…. 

 Colon polyps are common in adults and are harmless in most cases. However, most colon cancer begins as a polyp, so removing polyps early helps to prevent cancer.” 

Obviously, the doctor has to see clearly. That’s where the cleaning out comes in. There is preparation that will help him/her to do just that. Harvard Health explains: 

“The afternoon or evening before the colonoscopy, drink a liquid that will trigger bowel-clearing diarrhea. The exact colonoscopy prep instructions depend on the bowel prep your doctor prefers, the time of your colonoscopy, and any prior experience you’ve had with colon preps (if one didn’t work before, you’ll likely be prescribed a different one). 

You can read about some common bowel preparations approved by the American Gastroenterological Association, American College of Gastroenterology, and American Society for Gastrointestinal Endoscopy. Contact your clinician to discuss the one that is best for you.” 

Aha! There is something you should know about bowel preparation as a kidney disease patient. I went to the National Kidney Foundation for more specifics about an FDA warning. 

“The FDA warning is for bowel cleansing agents called sodium phosphate (OSP) products. These can be used as laxatives as well as in preparation for colonoscopy. OSPs are available both with and without a prescription and are taken by mouth. It is possible that phosphate crystals might be deposited in the kidneys when these products are used by some people. This can cause the loss of kidney function, which can lead to kidney failure. The medical term for this condition is acute phosphate nephropathy. 

People with chronic kidney disease are at risk, but other people are also at increased risk. These include people over age 55, people who have bowel obstructions or active colitis, and people who have hypovolemia or decreased intravascular volume (ask your doctor if you have these problems which can be caused by dehydration, bleeding, or the use of certain medicines, as well as other things). Also, some medicines can increase your risk, such as some hypertension drugs, including diuretics, angiotensin converting enzyme inhibitors, or angiotensin receptor blocker drugs. Ask your doctor if you are taking one of these medicines. Some over-the-counter medicines for pain or fever might also lead to increased risk. These are nonsteroidal anti-inflammatory drugs [NSAIDs]), like ibuprofen or naproxen. You can read the label on these pain relievers to see if one of these medicines is in the pill you take.” 

Wait a minute. You’re urged to undergo a colonoscopy, but the prep is not good for your kidneys? What’s a CKD patient to do? 

There are other preparations that are safe for kidney patients, and you don’t even need to check with your nephrologist. Your gastroenterologist or other doctor who will be performing the colonoscopy can tell you about them. For example, I took MiraLAX [OTC laxative] and Dulcolax [another OTC laxative]. They were more than effective, if you know what I mean. 

Until next week, 

Keep living your life! 

And So It Begins 

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

Photo by Francesco Ungaro on Pexels.com

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

Duke Medical’s site is what sparked my interest: 

“Ascent of the kidneys 

The kidneys initially form near the tail of the embryo. 

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

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

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

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

A. Duplication of the urinary tract 

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

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

B. Renal-Coloboma syndrome 

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

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

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

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

C. Nephroblastoma (Wilms Tumor) 

found in infants from 0-24 months of age 

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

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

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

D. Polycystic kidney disease 

can arise due to a variety of factors: 

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

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

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

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

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

Until next week, 

Keep living your life! 

It’s Seasonal 

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

A few reminders first. According to Medical News Today

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

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

I started seeing her for osteoarthritis decades ago. 

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

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

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

Photo by Ketut Subiyanto on Pexels.com

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

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

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

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

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

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

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

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

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

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

Other risk factors include: 

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

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

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

Until next week, 

Keep living your life! 

Support Groups 

I was speaking with my junior high school buddy, Joanne, the other morning. We don’t speak that often, but our conversations do tend to be at least an hour. Yes, this is the same Joanne I wrote about in Cancer Dancer. She told me about the support groups she belongs to. No, not Facebook groups, but zoom groups that started out as in person support groups and what she gets from them. 

I soon realized I’ve written pretty much only about the Facebook support groups. Well, it seems it’s time to write about in person or zoom groups. Some of these support groups were solely in person until the pandemic began, at which time they began offering zoom meetings. Some offer both: in person and zoom meetings. 

As someone who is a loner, I wanted to know what I could tell my readers about the benefits of support groups. MayoClinic to the rescue! 

“Benefits of participating in a support group may include: 

Feeling less lonely, isolated or judged 

Reducing distress, depression, anxiety or fatigue 

Talking openly and honestly about your feelings 

Improving skills to cope with challenges 

Staying motivated to manage chronic conditions or stick to treatment plans 

Gaining a sense of empowerment, control or hope 

Improving understanding of a disease and your own experience with it 

Getting practical feedback about treatment options 

Learning about health, economic or social resources” 

They do have a lot to offer. My buddy also mentioned how good she felt when another member of the support group said something like, “As Joanne mentioned….” She felt like she helped someone. I can see that. 

Photo by Tima Miroshnichenko on Pexels.com

What about medical support groups? Are they different in any way? According to HelpGuide

“When you’re going through a challenging or traumatic time, family members and friends may sympathize, but they don’t always know what to say or the best ways to help. Doctors and health professionals may sometimes offer minor emotional support, but their primary focus is always medical. 

Support groups developed to join people together who are dealing with similar difficult circumstances. That may be coping with a specific medical condition, such as cancer or dementia, a mental health issue like depression, anxiety, bereavement, or addiction, for example, or caring for a family member or friend facing such a problem. Whatever issues you or a loved one are facing, though, the best medicine can often be the voice of people who have walked in your shoes. 

A support group offers a safe place where you can get information that’s practical, constructive, and helpful. You’ll have the benefit of encouragement, and you’ll learn more about coping with your problems through shared experiences. Hearing from others facing similar challenges can also make you feel less alone in your troubles.” 

Hmmm, maybe we should look at the different kinds of zoom support groups now. By the way, I like the easily understood way Study.com delineated these: 

“Member-only/Self-help/Peer Support Groups 

Some support groups do not have a professionally trained leader. These are called member-only, self-help, or peer support groups. … there is usually no professionally trained leader. These support groups are beneficial because members can tell their own stories, listen to other people’s stories, and support and provide advice or strategies for one another. Sometimes members of these groups may feel more free to honestly share their thoughts than people in groups with a professionally trained facilitator, although this is not always the case. 

Professionally Facilitated Support Groups 

Professionally facilitated support groups are usually well-organized and have a leader who is professionally trained to help members deal with the group’s core issues…. while the facilitator might or might not have personally experienced the issue at the core of the support group, they would be professionally trained and experienced in supporting people who are dealing with these issues. These support groups are beneficial because members can share their own experiences, listen to other people’s experiences, provide support to one another, and receive professional advice and opinions about how to handle their particular issues. Members may also receive strategies to cope or improve from other group members. Some groups have leaders who have experienced the problem the group supports and who are professionally licensed to provide therapy to others. 

Members of a support group work together to help one another and to receive support. 

Online Support Groups 

Online support groups may have a professionally trained leader, a leader who has experienced the issue, or no clear leader. These groups, like other support groups, can have any number of purposes…. The benefits could be the same as in-person support groups, such as providing an outlet to express feelings, the chance to help others, the opportunity to get advice and coping techniques, and an increase in positive feelings. A unique benefit of online support groups is that people who live anywhere can join as can people who have physical disabilities that limit their mobility. 

Depending on the criteria involved in joining the online support group, one challenge could be making sure that members genuinely had the problem the support group was centered around. Online support groups that are not run effectively might be unmonitored, which could increase the chance of problems, rather than benefits, for members. However, overall, online support groups are effective tools for support.” 

I think we should spend a little time on where to find these support groups. Of special interest to us would be those for chronic kidney disease, dialysis, and/or transplant. A good place to start is the National Kidney Foundation. Their support group is asynchronous, meaning not all the members are online at the same time. You leave a comment or question, and other members answer when they can. 

The AAKP, or American Association of Kidney Patients, offers a list of online support groups by state. At last count, there were 11 different groups. Some of them were further specialized as to transplant, men only, and end stage renal disease. Some even offered telephone entry to the group for those without computers. 

RSNHope, the Renal Support Network, offers their own online support group. Many of the hospitals where you’ve been treated may also offer online support groups. Or you can ask your nephrologist if they can help you find one. Remember, if it’s online, it doesn’t have to be local. 

What do you say we all give Joanne a big thank you for suggesting today’s topic. 

Until next week, 

Keep living your life! 

Peeking into Peds 

This has been a banner year for babies amongst my daughter’s friends circle. It’s too bad they’re spread all over the country, but that’s the way it is these days, isn’t it? Anyway, one of these babies has been having a difficult time lately.  

Photo by Daniel Reche on Pexels.com

If you remember, I created SlowItDownCKD way back in 2011. I have never written about pediatric kidneys. But I was more than curious about how I might be able to help this young woman and her husband understand what her baby was going through. Therefore, welcome to my first blog concerning pediatric kidneys. 

This baby boy’s problems started with RSV. What’s RSV? Let’s allow the Centers for Disease Control and Prevention answer that question: 

“Respiratory syncytial (sin-SISH-uhl) virus, or RSV, is a common respiratory virus that usually causes mild, cold-like symptoms. Most people recover in a week or two, but RSV can be serious, especially for infants and older adults. RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia (infection of the lungs) in children younger than 1 year of age in the United States.” 

You’re probably asking yourself what the lungs have to do with the kidneys at this point. An article in the Journal of Nephrology explains: 

“A significant interaction between kidneys and lungs has been shown in physiological and pathological conditions. The two organs can both be targets of the same systemic disease (eg., some vasculitides [Gail here: That means one of the disorders that inflame blood vessels to the point of destroying them.]). Moreover, loss of normal function of either of them can induce direct and indirect dysregulation of the other one.” 

The little tyke in question tested positive for a UTI. Take a look at what Johns Hopkins Medicine has to say about UTIs: 

“A urinary tract infection is inflammation of part of the system that takes urine out of the body. It’s caused by bacteria. The urinary tract includes the two kidneys. They remove liquid waste from the blood in the form of urine. Narrow tubes (ureters) carry urine from the kidneys to the bladder. Urine is stored in the bladder. When the bladder is emptied, the urine travels through a tube called the urethra and passes out of the body. Bacteria can infect any part of this system.” 

The baby’s UTI was determined to be caused by E. coli. I have to admit I didn’t know much about E. coli, so I turned to UpToDate, an easily understood medical site for professionals [and seemingly lay people], and not only found information about E. coli, but more about UTIs: 

“In healthy children, most urinary tract infections (UTIs) are caused by Escherichia coli (E. coli) bacteria, which are normally found in stool. These bacteria can move from the anus to the urethra and into the bladder (and sometimes up into the kidney), causing infection. 

Risk factors — Some children have a higher chance of developing a UTI. The following are some risk factors for UTI: 

● Young age – Males younger than one year old and females younger than four years of age are at highest risk.   

●Being uncircumcised – There is a four to 10 times higher risk of UTIs in uncircumcised males. Still, most uncircumcised males do not develop UTIs. …   

●Having a bladder catheter for a prolonged period of time.   

●Having parts of the urinary tract that did not form correctly before birth.   

●Having a bladder that does not work properly or constipation (bladder and bowel dysfunction [BBD]).   

●Having one UTI slightly increases the chance of getting another UTI.”  

My daughter explained that her friend’s little boy was uncircumcised and had both catheters [although not for extended periods] and UTIs before. Then she asked why the baby needed an ultrasound. As always, I told her I’d try to find out.  

I not only found out, but discovered information about the other test this baby is taking: 

“For a renal ultrasound, warm jelly is placed on the abdomen and back and a probe is moved over the surface of the skin. This produces a special kind of picture of the kidney and bladder. This picture shows the size of the kidneys and the bladder, and if there are any other problems such as previous scarring or swelling of the kidneys (hydronephrosis) or thickening of the bladder wall. 

A voiding cystourethrogram is a test where a small tube called a catheter is inserted in the bladder. The bladder is filled with a dye and x-rays are taken. Once the bladder is full, the child is asked to urinate and x-rays are taken again. If the fluid with the dye is seen backing up the ureters to the kidneys, reflux is present.” 

Thank you to Dartmouth Health Children’s for educating us about the renal ultrasound and the voiding cystourethrogram. Even though a three month old baby cannot urinate on demand [At least, I don’t think he can.], the catheter will help obtain the urine.  

Maybe a reminder of how urine works would be helpful here. This is from Cincinnati Children’s Health Library

“The kidneys filter the blood and make urine. Urine goes from the kidneys to the bladder through tubes called ureters. Where the ureters and the bladder join, there is a valve-like mechanism. This mechanism prevents the urine from backing up to the kidneys. As the bladder fills with urine, it sends a message to the brain. The brain then sends a message to the sphincter muscle to relax, while the bladder muscle squeezes, allowing the bladder to empty. This is called voiding or urination.”   

I think I skipped over ‘reflux.’ Let me check. Hmmm, I did. Okay, in this case reflux refers to the backing up of the urine. Well, it is a little more complex than that. Back to Cincinnati Children’s Health Library for us: 

“Vesicoureteral reflux (VUR) is a condition in which urine from the bladder is able to flow back up into the ureter and kidney. It is caused by a problem with the valve mechanism. Pressure from the urine filling the bladder should close the tunnel of the ureter. It should not allow urine to flow back up into the ureter. When the ureter enters the bladder at an unusual angle reflux can can [sic] occur. This can also happen when the length of the ureter that tunnels through the bladder wall is too short. 

VUR becomes a problem when the urine in the bladder gets infected. The infected urine travels backward to the kidney. This can cause a kidney infection. Kidney infections lead to kidney damage.” 

Don’t panic, mother of this babe. The reflux is graded from 1-5. In most cases of grades 1-3, the condition will correct itself as your baby matures. The baby will need to take antibiotics on a daily basis, however. 

There’s even more information available about urine reflex and how to treat it in babies, but this is a blog – not a book – so I’ll have to stop now. To the mother of this little boy, I hope I’ve helped you understand a bit better. 

Until next week, 

Keep living your life! 

Old vs New

Some of my friends and family are mixed race. Or, at least, that’s what they call themselves. Usually, neither of us cares what they’re called. I used to think it was only important in diagnosing and staging chronic kidney disease. I’d been told Blacks have higher muscle mass and that’s why they needed their own classification for CKD testing. Not being a doctor [and not really understanding], I accepted that. But where did that leave my mixed race friends and family, I wondered. The choices were Black or non-Black. They weren’t either. 

Photo by Godisable Jacob on Pexels.com

It did seem weird. Maybe we need to know what creatinine has to do with muscle mass. I turned to the Biron Health Group in Canada for a clear explanation: 

“Creatinine is a normal product of muscle metabolism (breakdown) and is eliminated through the urine. The level of creatinine in the blood depends on a person’s muscle mass and the quality of their renal (kidney) function. Calculation of the estimated glomerular filtration rate (eGFR) allows for variations in people’s muscle mass to be taken into account when evaluating their kidney function.” 

Let’s backtrack just a bit here for a definition of eGFR. The ‘e’ stands for estimated, rather than measured. Measured GFR would have a ‘m’ before the ‘GFR’ rather than an ‘e.’ It’s also a more complicated test. GFR is Glomerular Filtration Rate. The National Institutes of Health’s National Library of Medicine’s MedlinePlus [What a mouthful!] tells us: 

“A glomerular filtration rate (GFR) is a blood test that checks how well your kidneys are working. Your kidneys have tiny filters called glomeruli. These filters help remove waste and excess fluid from the blood. A GFR test estimates how much blood passes through these filters each minute.” 

Okay, let’s go back to my mixed race friends and family. It seems I wasn’t the only one who had questions. According to the American Kidney Fund

“A task force led by the National Kidney Foundation (NKF) and the American Society of Nephrology (ASN) was formed in 2020 to look into the use of race in the GFR test. The NKF-ASN Task Force asked patients, the community and kidney disease experts, including AKF’s Medical Advisory Committee, to give advice on how to reduce bias in the equations that estimate how well kidneys work. In September 2021, the NKF-ASN Task Force announced recommendations to remove Black race in the eGFR calculation.” 

Wait a minute. Does that mean that my mixed race friends and family who previously chose the Black or Afro-American classification to calculate their GFR would now have a higher or lower GFR? This is confusing to patients at best. But it doesn’t have to be. Let’s take a look at the differences. 

University of California –Davis Health goes right to the heart of the matter [the kidney of the matter is more like it]: 

“Our data showed that a large number of patients in higher risk groups would either be reassigned from stage 3 to stage 4 CKD, or reassigned from CKD-negative to CKD-positive, simply by removing the race parameter from the calculation of their eGFR.” 

Think about that for a minute. It basically means that more people will be treated as they need to be instead of not being treated because they have higher muscle mass as a race. Here’s where I am intrigued that the American Medical Association has this insight: 

“‘By acknowledging that race is a social construct and not an inherent risk factor for disease, we can truly make progress toward our goal of attaining health equity for all patients. The AMA will continue to strongly support policies and regulations aimed at eliminating barriers to care and protecting the health of our nation’s most vulnerable populations,” said Dr. Suk.” 

Dr. Suk is an AMA Board Member, M.D., J.D., M.P.H. [Master of Public Health], M.B.A.    

I wondered how else my mixed race friends and family who identified as Black would now benefit from the GFR calculation without racial classification. Thank you to the National Center for Biotechnology Center for this information: 

“Removal of race adjustment may increase CKD diagnoses among Black adults and enhance access to specialist care, medical nutrition therapy, kidney disease education, and kidney transplantation, while potentially excluding kidney donors and prompting drug contraindications or dose reductions for individuals reclassified to advanced stages of CKD. This potential for benefits and harms must be interpreted in light of persistent disparities in care… documented biases of eGFRcr without race… and the historical misuse of race as a biological variable to further racism….” 

Photo by Alex Green on Pexels.com

However, the same source has several warnings for us: 

“First, many institutions use the Modification of Diet in Renal Disease (MDRD) equation. Removal of the larger race coefficient in the MDRD (1.212 vs 1.159 in CKD-EPI) would lead to larger decreases in eGFR and more individuals crossing relevant thresholds. Second, some institutions have removed race using methods other than universalizing the “White/other” equation. Third, eGFR does not determine care for all patients. Clinical judgment… unbiased confirmatory tests to corroborate eGFRcr, and varying adherence to guidelines may all influence how changes materialize.” 

In other words, this is not the universal equation for calculating GFR. It’s a step in the right direction, but there’s still more work to be done. Monica Hahn, MD, MPH, MS, AAHIVS [American Academy of HIV Medicine] via Practice Update affirms the work that has been done so far: 

“…. A recent study found that the removal of the race correction factor and subsequent re-staging of chronic kidney disease would make 14,000 Black patients newly eligible for kidney transplants, and 60,000 newly eligible for specialist referral.” 

We’re on the right track. Don’t forget we’ve been using the old method of calculating eGFR for 50 years! 

Dr. Hahn’s recommendation? 

“…. the National Kidney Foundation and American Society for Nephrology now recommend the use of the new, race-free 2021 CKD-EPI Creatinine Equation to estimate GFR as of September 2021.” 

This is sounding good for my mixed race friends and family. And all others of mixed race, of course. 

Until next week, 

Keep living your life! 

aHus is …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

TRIGGERS VS. THE CAUSE 

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

Photo by Andrea Piacquadio on Pexels.com

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

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

” The FDA has approved two drugs to treat aHUS: 

Eculizumab (Soliris) 

Ravulizumab (Ultomirus) 

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

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! 

That Delicious All-American Italian Food: Pizza 

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

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

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

  • Calories: 285 
  • Fat: 10.4g 
  • Sodium: 640mg 
  • Carbohydrates: 35.6g 
  • Fiber: 2.5g 
  • Sugars: 3.8g 
  • Protein: 12.2g” 

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

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

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

Photo by Nataliya Vaitkevich on Pexels.com

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

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

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

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

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

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

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

Photo by RODNAE Productions on Pexels.com

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

There is a Difference, You Know 

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

Photo by Andrea Piacquadio on Pexels.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

NewsMedicalLifeSciences has an interesting bit of information for us: 

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Move It (Please) 

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

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

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

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

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

“This is something I explored in my first CKD book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease

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

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

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

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

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

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

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

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

“How does exercise benefit me? 

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

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

Improved muscle physical functioning 

Better blood pressure control 

Improved muscle strength 

Lowered level of blood fats (cholesterol and triglycerides) 

Better sleep 

Better control of body weight …. 

Type of Exercise 

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

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

How Long to Exercise 

Photo by Andrea Piacquadio on Pexels.com

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

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

How Often to Exercise 

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

How Hard to Work While Exercising  

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

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

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

The intensity should be a “comfortable push” level.  

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

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

There’s more on their website.  

No excuses now. Let’s go exercise. 

Until next week, 

Keep living your life! 

Nailed It! 

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

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

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

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

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

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

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

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

I found this on ResearchGate

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

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

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

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

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

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

Onychomycosis in Patients with Chronic Renal Failure 

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

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

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

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

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

Beau’s lines 

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

Ridged nails 

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

White streaks/spots 

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

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

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

Until next week, 

Keep living your life! 

They Can be a Pair 

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

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

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

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

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

I turned to The National Kidney Foundation to find out: 

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

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

18 years or older 

Have both Type 1 diabetes and kidney failure 

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

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

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

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

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

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

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

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

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

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

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

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

This is from a MedlLinePlus article published last year: 

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

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

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

Until next week, 

Keep living your life!  

How  Pets Help

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

Bella

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Shiloh

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

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

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

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

All on Amazon

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

Does Coffee Count? 

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

Photo by Ivan Samkov on Pexels.com

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

“A common misconception is that everyone should drink eight glasses of water per day, but since everyone is different, daily water needs will vary by person. How much water you need is based on differences in age, climate, exercise intensity, as well as states of pregnancy, breastfeeding, and illness.” 

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

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

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

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

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

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

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

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

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

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

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

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

“Examples of fluid: 

Ice 

Soups and stews 

Pudding 

Ice cream, sherbet, sorbet, popsicles, etc. 

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

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

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

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

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

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

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

Until next week, 

Keep living your life!  

My Friend’s Wife

I live in Arizona. Therefore, it’s almost a default that I know undocumented immigrants. I met many DREAMers when I was teaching at Phoenix College. The American Immigration Council tells us: 

Photo by Bruno Cervera on Pexels.com

“The first version of the Development, Relief, and Education for Alien Minors (DREAM) Act was introduced in 2001. In part because of the publicity around that bill, young undocumented immigrants have been referred to as ‘Dreamers.’ Over the last 20 years, at least 11 versions of the Dream Act have been introduced in Congress. While the various versions of the bill have contained some key differences, they all would have provided a pathway to legal status for undocumented people who came to this country as children. Some versions have garnered as many as 48 co-sponsors in the U.S. Senate and 152 in the House of Representatives. 

Despite bipartisan support for each iteration of the bill, none have become law. To date, the 2010 bill came closest to full passage when it passed the House but fell just five votes short of the 60 needed to proceed in the Senate.” 

And then, there’s DACA or Deferred Action for Childhood Arrivals. According to U.S. Citizenship and Immigration Services

“On June 15, 2012, the secretary of Homeland Security announced that certain people who came to the United States as children and meet several guidelines may request consideration of deferred action for a period of two years, subject to renewal. They are also eligible for work authorization. Deferred action is a use of prosecutorial discretion to defer removal action against an individual for a certain period of time. Deferred action does not provide lawful status.” 

Not only did I meet students who were undocumented immigrants, but also everyday workers in my life. Now here’s where we get to kidney disease and undocumented immigrants. One such person that I’ve known for many years knew that I’m a chronic kidney disease awareness advocate. I know very little Spanish, and his English is somewhat limited.  In our stilted way, we discussed that his wife is on dialysis. I wondered how this was possible since they are both undocumented. 

It turns out that Arizona is one of only twelve states that offer non-emergency dialysis to undocumented immigrants. OMG. Does that mean that all the other states allow them to die if they need dialysis? Well, not exactly. The National Center for Biotechnology Information explains: 

“Standard of care for people with kidney failure is thrice-weekly outpatient hemodialysis, daily peritoneal or home hemodialysis, or kidney transplantation. Undocumented immigrants are excluded from the provisions of the Affordable Care Act, the diagnosis-based 1972 Medicare End-Stage Renal Disease entitlement program, and a range of federally funded Medicaid programs that pay for standard outpatient dialysis. The Emergency Medical Treatment and Active Labor Act requires hospitals to treat anyone who enters with an emergency medical condition, enabling undocumented immigrants to receive dialysis when they present to hospitals with emergency indications…. 

Emergency-only dialysis is associated with lower quality of life, high symptom burden, and significant anxiety about death…. Compared with people receiving standard dialysis, this population’s 5-year mortality is 14-fold higher and they spend more time in the hospital and less time in the outpatient setting…. Emergency-only dialysis is taxing on the health care system. Studies show that their providers experience emotional exhaustion and burnout from the perception of propagating unjust, unethical, and substandard medical care…. It is also extremely costly: emergency-only dialysis costs $285,000 to $400,000 per person per year… compared with $76,177 to $90,971 per person per year for standard dialysis…. Switching from emergency-only dialysis to outpatient dialysis is associated with a cost reduction of $5,768 per person per month….” 

This is sounding dismal. I asked my friend about a transplant for his wife. He explained that wasn’t possible. They couldn’t afford it. I wasn’t sure what he meant so I decided to find out since he couldn’t explain more than that. Weren’t there governmental agencies that would help financially?  The news is not good. This is what KidneyNews offers: 

“The policy of the Organ Procurement and Transplantation Network (OPTN) clearly states that ‘deceased donor organ allocation to candidates for transplantation shall not differ on the basis of the candidate’s residency or citizenship status in the United States.’ 

There appears to be no legislation barring undocumented immigrants from receiving organs, but the lack of federally funded health insurance achieves that end, resulting in automatic and indirect exclusion. The Omnibus Budget Reconciliation Act passed by Congress in 1986 prohibits the use of federal Medicaid funding for payment of care provided to undocumented immigrants except for what qualifies as emergency medical care under the Emergency Medical Treatment and Active Labor Act (EMTALA). 

In 1996, further legislation denied all state and local public benefits to undocumented immigrants and left the states to pass their own laws to determine the eligibility criteria under which public benefits would be available to undocumented immigrants. Additional legislation was passed to augment federal Medicaid funding to states with the greatest number of undocumented immigrants. Undocumented immigrants with catastrophic illnesses such as kidney failure, cancer, or traumatic brain injuries are also excluded from the Patient Protection and Affordable Care Act. 

Under EMTALA, all states must offer at least emergent-only dialysis to all patients; however, kidney transplantation is not considered to be part of this program and is not offered to undocumented immigrants….” 

Of course, there are all kinds of ethical issues here, but today I’m just writing about my friend’s wife’s life… and I am heartbroken that this wife, mother, and grandmother will not be able to procure a kidney because she is undocumented. Yes, this may be an insurance issue, but it still means no kidney for this woman.  

So, it seems that if there isn’t a wealthy benefactor waiting in the wings, there will be no transplant. While researching for this week’s blog, I read several stories about just such a thing happening. I think the key word in the previous sentence is “several.” What about the other undocumented immigrants who need a transplant? It looks like they are facing a life of emergency dialysis unless they happen to be lucky enough to live in one of the twelve states that offers scheduled dialysis to undocumented immigrants. 

Until next week, 

Keep living your life! 

Black History Month and the Present 

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

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

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

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

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

“Kirk Campbell, M.D. 

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

Olayiwola Ayodeji, M.D.  

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

Paul W. Crawford, M.D. 

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

Photo by William Fortunato on Pexels.com

Crystal Gadegbeku, M.D. 

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

Eddie Greene, M.D. 

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

Susanne Nicholas, M.D. 

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

Carmen Peralta, M.D. 

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

Neil Powe, M.D. 

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

Crystal Tyson, M.D. 

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

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

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

Until next week, 

Keep living your life! 

The Big House (and the Little House) 

Readers tell me the most interesting things. A comment on last week’s blog about street drugs led me to research chronic kidney disease in the incarcerated population. I presumed it was going to be a difficult search for material since it seemed somewhat esoteric to me. Was I ever wrong. My first inquiry brought up the following. 

Photo by Ron Lach on Pexels.com

Oh wait, first we need to make certain you know that jail and prison are two separate things. Let’s turn to the Merriam-Webster Dictionary. You didn’t expect any other, did you? 

“If you wish to avoid ambiguity in use you should use prison for serious crimes with longer sentences, and jail for less serious crimes, or for detention awaiting trial. And penitentiary, when referring to a hoosegow, often has the specific meaning of ‘a state or federal prison in the U.S.’” 

Incarceration usually refers to long term detention, in other words, prison.  

Okay, now we can turn the prison population. An article in The Clinical Journal of the American Society of Nephrology stated in no uncertain terms, 

“CKD affects 15% of US adults and is associated with higher morbidity and mortality. CKD disproportionately affects certain populations, including racial and ethnic minorities and individuals from disadvantaged socioeconomic backgrounds. These groups are also disproportionately affected by incarceration and barriers to accessing health services. Incarceration represents an opportunity to link marginalized individuals to CKD care. Despite a legal obligation to provide a community standard of care including the screening and treatment of individuals with CKD, there is little evidence to suggest systematic efforts are in place to address this prevalent, costly, and ultimately fatal condition.” 

Did that mean the prisoners with CKD weren’t treated? Or that they weren’t screened? And if so, why not? It couldn’t be that CKD was ignored and allowed to progress until prisoners died, could it? I was becoming more and more curious about this. Back to the internet. 

Medicare usually pays for dialysis. Here’s what Medicare has to say about medical coverage while you’re incarcerated. 

“If you had Medicare before your arrest, you will remain eligible for the program while you are incarcerated. However, Medicare generally will not pay for your medical care. Instead your correctional facility will provide and pay for your care. Once you are released, Medicare will resume coverage if you remained enrolled.” 

According to the Federal Bureau of Prisons

“The Bureau’s professional staff provides essential medical, dental, and mental health (psychiatric) services in a manner consistent with accepted community standards for a correctional environment. The Bureau uses licensed and credentialed health care providers in its ambulatory care units, which are supported by community consultants and specialists. For inmates with chronic or acute medical conditions, the Bureau operates several medical referral centers providing advanced care. 

Health promotion is emphasized through counseling provided during examinations, education about the effects of medications, infectious disease prevention and education, and chronic care clinics for conditions such as cardiovascular disease, diabetes, and hypertension. The Bureau promotes environmental health for staff and inmates alike through its emphasis on a clean-air environment and the maintenance of safe conditions in inmate living and work areas. The Bureau’s food service program emphasizes heart-healthy diets, nutrition education, and dietary counseling in conjunction with certain medical treatment.” 

While I found the protocols for dealing with hypertension and diabetes on this website – the two leading causes of CKD – I didn’t find any for dealing with kidney disease itself. 

So, I looked further and found myself reading an October 2020 article in Transplantation

“The US Constitution guarantees adequate medical care to all convicts… however, transplantation is considered ethically contentious…. The determination to authorize transplantation for an inmate is often made by the prison administration on a case-by-case basis. Nevertheless, the Organ Procurement and Transplantation Network’s ethics committee advises that ‘one’s status as a prisoner should not preclude them from consideration for a transplant….’ However, Organ Procurement and Transplantation Network acknowledges that other nonmedical factors may influence patient’s candidacy for transplant and delegates the listing decisions to the individual transplant programs…. Consequently, programs make listing decisions in the absence of uniform criteria and hesitate to evaluate and waitlist prisoners…. The possible reasons are logistic challenges in clinical care, security concerns, uncertainty regarding adherence and concern of loss of follow-up. Overcoming these challenges requires program’s personnel to be highly motivated to accept convicts for transplantation.” 

Well, what about jails? How do they deal with chronic conditions? I discovered a site called Health Affairs that explained, 

“In 2019, there were a total of 10.3 million jail admissions with an average daily census of 741,900 across the United States. With a mean stay of 26 days, care for chronic medical conditions can be interrupted, jeopardizing the health and well-being of the incarcerated individual. Additionally, one in four jailed individuals will be arrested again, and these periodic short stays in jail introduce chaos into ongoing medical care. This is particularly concerning because the incarcerated population has a higher prevalence of chronic conditions such as diabetes mellitus, hypertension, and asthma compared to the general population….” 

Looking at the other side of the coin, you should know that prisoners have the right to refuse medical treatment. I’ve been to numerous sites in writing today’s blog and each one of them talked about the inferior quality of medical care in jails and prisons. While some acknowledged that there has been improvement in recent years, prisoners still do not trust the medical care they’re offered. 

It’s clear there’s far more to this issue than I’ve disclosed. However, this is as far as I am willing to go. Since both jails and prisons are government institutions, there are many ifs, ands, and buts. To explore these would take an encyclopedia in my opinion. 

Meanwhile, Happy Valentine’s Day. You do know that the digital version of the SlowItDownCKD series can easily be an instant gift for your loved ones. It will demonstrate your caring and help them understand chronic kidney disease. Whether you order a book or not, I wish you all my love on this Valentine’s Day. 

Until next week, 

Keep living your life! 

Skin Deep

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

Photo by Kampus Production on Pexels.com

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

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

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

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

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

“Xerosis 

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

Management of xerosis includes: 

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

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

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

Steroid cream: Medical creams can help alleviate itching.” 

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

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

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

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

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

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

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

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

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

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

DermNet Az tells us that pruritus means, 

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

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

CKD is a systemic disease. 

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

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

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

Healthline further explains,  

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

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

That includes kidney transplants. 

You know that old song,  

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

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

Until next week, 

Keep living your life!