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 8^th leading cause of death[2], and if left unaddressed, it is projected to be the 5^th 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.

2. 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.

3. 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.

2. 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.

3. You can drink too much water

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

4. 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.

5. 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.

2. 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.

3. 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!

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!

Loyal Reader Strikes Again!

This man asks some really intricate questions. This time, he asked me about ileus. I’d never heard of it, but WebMD certainly has:

“Ileus is a temporary condition where your intestine can’t push food and waste out of your body. Your intestine is a long and winding tube inside of your body that attaches your stomach to your anus. It has two parts, small and large. The small intestine’s main job is to break down the food you eat. The large intestine, or colon, absorbs water and uses strong, wavelike movements to push broken-down food and waste to your anus so you can poop. When your intestine stops making those wavelike movements for a while, ileus occurs. It usually lasts 1-3 days.”

Side rant: What ever happened to defecate? When did that become poop? This is akin to urine now being referred to as pee.

Back to the subject. I think WebMD was straight forward, but I’d like to add two items. First is the definition of anus. Not everyone knows that technical term. Now why isn’t it called poop hole instead? That would fit in quite nicely with poop instead of defecate and pee instead of urine.

Ready for my favorite dictionary to come to the rescue? This is from the Merriam-Webster Dictionary:

“the posterior opening of the digestive tract”

The second item is that there we are not looking at obstruction. That’s when there is a physical object blocking your intestines.

Just thought of a third. There are several other types of ileus. They are postoperative, paralytic, meconium, and gallstone.

I wanted to know what can cause ileus. Healthline gave me the answer:

• “intestinal cancer
• diverticulitis
• Parkinson’s disease, which affects muscles and nerves in the intestines
• Crohn’s disease, which rarely causes a blockage but may cause the intestinal walls to thicken due to autoimmune inflammation”

Certain drugs can slow down, but not stop the movement of food and liquid through your intestines.

However, the symptoms are of ileus are unmistakable. I turned to Medical News Today to see what they are:

• “stomach cramps and pain
• bloated or swollen stomach
• nausea
• vomiting
• constipation or passing small amounts of watery stool
• loss of appetite
• feeling full
• inability to pass gas”

If you think this sounds terrible, Loyal Reader gave me a first hand account of his symptoms and how very ill they made him. Honestly, I cannot image going through these symptoms.

Obviously, something must be done. But what?

“Treatment of an ileus requires time and supportive management. Bowel rest, intravenous (IV) fluid therapy, and, if warranted, nasogastric (NG) decompression are important steps. Historically these treatments were thought to lower complications and improve outcomes, but a recent review of the evidence shows otherwise….Chewing gum has been studied and seems to be a cheap, well-tolerated way to potentially help with ileus as it stimulates the cephalocaudal reflex, which promotes peristalsis and inhibits inflammation…. Unfortunately, these are the only options we currently have as pharmacologic agents have been ineffective.”

[Gail here: Chewing gum? I wondered if it had to be a specific kind.]

Thank you to The National Center for Biotechnology Information for the above material. We probably need a few definitions in order to understand it a little better. For example, nasogastric decompression. That is when a tube is inserted through the nose and snaked down to your stomach via the esophagus. It is used to drain the stomach.

MedlinePlus has a wonderfully simple explanation of peristalsis:

“Peristalsis is a series of muscle contractions. These contractions occur in your digestive tract. Peristalsis is also seen in the tubes that connect the kidneys to the bladder.

Peristalsis is an automatic and important process. It moves:

• Food through the digestive system
• Urine from the kidneys into the bladder
• Bile from the gallbladder into the duodenum

Peristalsis is a normal function of the body. It can sometimes be felt in your belly (abdomen) as gas moves along.”

Loyal Reader was especially interested in whether those who have CKD were more prone to ileus since WebMD cited the following as one of the causes of ileus:

• “Health issues such as kidney failure, heart attack, and hypothyroidism (when your thyroid gland doesn’t make enough of certain important hormones)”

I couldn’t find further information about the prevalence of CKD patients who had ileus as opposed to non-CKD patients. I did find this in the American Journal of Gastroenterology:

“Patients undergoing kidney transplant are more likely to develop ileus than patients who did not have kidney transplant surgery, confirming known reports documenting ileus in the early post-operative period. This cohort of patients who developed ileus following transplant have greater odds of post-operative complications, as well as increased morbidity, resource utilization and economic burden.”

Notice the words “more likely.” That doesn’t mean definitely.

Let’s do some speculating. We already know that CKD patients do seem to have quite a bit of constipation. Constipation could be a cause of ileus. Would it stand to reason that those with CKD caused constipation would develop ileus? I think so, but I’m not a doctor. Maybe this is something to discuss with your nephrologist.

In all honesty, I did find two articles that touched upon a possibility that ileus is more common amongst CKD patients, but one was from 1918 [that tickled my fancy] and the other from 1935. Considering I prefer to use only as recent information as I can find, these two were way out of my ball park.

There is so much more to know about ileus. I now think of it as something that we, as chronic kidney disease patients, need to keep in mind should we need a transplant. Thank you, Loyal Reader, for making us aware that this even exists.

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!

That’s a Mouthful

This week, I promised a reader I would find what I could about Progressive Multifocal Leukoencephalopathy. Now you see why this blog’s title refers to a mouthful. We’ll make life easier by referring to this by its acronym PML. Let’s go to my all time favorite dictionary, The Merriam-Webster, for a definition:

“a progressive and often fatal demyelinating disease of the central nervous system that typically affects immunocompromised individuals and that is characterized especially by muscle weakness and loss of coordination with impairments in speech, vision, and cognitive function and that commonly progresses to paralysis and coma”

If you’re anything like me, you wonder what that all means. First of all, I want to reassure my reader that although this may be a fatal disease, it can be slowed down.

Okay, now we can precede. Actually, let’s back up a little for the definition of demyelinating:

“causing or characterized by the loss or destruction of myelin”

Now we’re getting some place, but I can see we’re starting to fall down the rabbit hole by defining words in definitions, so let’s deal with what PML has to do with chronic kidney disease instead. With all these new terms, I wanted to know how you contact PML and I’m sure my reader does, too. Thank you to the Cleveland Clinic for the answer to the question:

“Progressive multifocal leukoencephalopathy (PML) is a rare brain infection. PML causes the cells that produce myelin to break down. Myelin is a substance in the brain that protects nerve cells. PML causes brain damage. This damage can lead to mental impairment, visual symptoms and difficulty moving. Because PML is a progressive disorder, it will get worse over time. Some people can slow the disease’s progression with timely treatment. PML typically only occurs in people who have severely weakened immune systems. You may be at risk of developing PML if you have:

• HIV/AIDS.
• Leukemia (cancer in blood and bone marrow).
• Lymphoma (cancer in the lymph system).
• A donor organ and have taken immunosuppressant medicines (drugs to keep your body from rejecting the organ).

Progressive multifocal leukoencephalopathy is rare. It affects about 1 in every 200,000 people.”

What causes progressive multifocal leukoencephalopathy (PML)?

PML occurs because of the JC virus (JCV) — named after the initials of the first patient identified with it. Up to 85% of all adults have the JC virus. Experts aren’t certain how people contract JCV. There is evidence that children may pick it up through food or water. In most people, JCV remains inactive and causes no symptoms. But in people with a weak immune system, the virus may progress into PML.”

Let’s jump over to Healthline to see if we can find out anything else,

“… the JC virus is quite common. In fact, up to 85 percent of adults in the general population have the virus. You can get the JC virus at any time in your life, but most of us are infected during childhood. A normal, healthy immune system has no trouble keeping the virus in check. The virus usually remains dormant in the lymph nodes, bone marrow, or kidneys throughout our lifetime. Most people with the JC virus never get PML. If the immune system becomes severely compromised for any reason, the virus can be reactivated. Then it makes its way to the brain, where it multiplies and begins its attack on myelin.

As myelin is damaged, scar tissue begins to form. This process is called demyelination. The resulting lesions from the scar tissue interfere with electrical impulses as they travel from the brain to other parts of the body. That communication gap can create a variety of symptoms affecting virtually any part of the body.”

You’ve probably already figured out that the connection between PML and CKD is having a weak immune system. [That’s what has kept us off planes for the last four years, not PML, but being immunocompromised due to CKD.] But those of us who have gone beyond CKD, had a transplant, and are taking immunosuppressant medications are also open to PML. Keep in mind that one in 200,000 is a very small percentage.

Last month, the National Institute of Neurological Disorders and Stroke posted the following on their page. I retrieved quite a bit of information from them,

“The symptoms of PML, which vary according to the location and amount of damage in the brain, may evolve over the course of several weeks to months. The most prominent symptoms are:

• Clumsiness
• Progressive weakness
• Visual, speech, and sometimes personality changes

The progression of deficits leads to life-threatening disability and (frequently) death. 

A diagnosis of PML can be made following brain biopsy or by combining observations of a progressive course of the disease, consistent white matter lesions visible on a magnetic resonance imaging (MRI) scan, and the detection of the JC virus in spinal fluid.

Currently, the best available therapy is reversal of the immune-deficient state, since there are no effective drugs that block virus infection without toxicity. Reversal may be achieved by using plasma exchange to accelerate the removal of the therapeutic agents that put people at risk for PML. 

…. Several new drugs that laboratory tests found effective against infection are being used in people with PML with special permission of the U.S. Food and Drug Administration (FDA).

The outlook for individuals with PML depends on the severity of the underlying disease and treatment received. In general, PML has a mortality rate of 30 to 50 percent in the first few months following diagnosis. Those who survive the disease may be left with severe neurological disabilities.”

Just a few reminders for my special reader before I sign off:

1. The disease can be slowed down by timely treatment.
2. There are drugs available by special permission of the FDA.
3. As usual, no two patients require the same treatment or have the same prognosis.

I wish you and your husband the best. While I can do a bit of research for you, I am not a doctor. He or she is the one to ask specific questions for your specific patient.

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:

• Biliary dyskinesia. This occurs when the gallbladder doesn’t empty bile correctly due to a defect in its motion.
• Choledocholithiasis. This happens when gallstones have moved to the common bile duct where they may be stuck, causing a blockage that doesn’t allow the gallbladder or rest of the biliary tree to drain.
• Cholecystitis. This is inflammation of the gallbladder.
• Pancreatitis. This is inflammation of the pancreas.”

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:

• “Cyclosporines (Neoral®, Gengraf®, Sandimmune®)
• Tacrolimus (Prograf®, FK506)
• Mycophenolate mofetil (CellCept®)
• Prednisone
• Azathioprine (Imuran®)
• Sirolimus (Rapamune®)
• Daclizumab and Basiliximab (Zenapax® and Simulect®)
• OKT3® (monoclonal antibody)
• Anti-Fungal Medications (Mycelex Troche®, Nystatin® Swish and Swallow, and Diflucan®)
• Antiviral Medications: Zovirax® (acyclovir), Cytovene® (ganciclovir), and Valcyte® (valganciclovir)
• Diuretics: Lasix® (furosemide)
• Antibiotics: Bactrim® (septra)
• Anti-Ulcer Medications: Prilosec® (omeprazole), Prevacid® (lansoprazole), Zantac® (ranitidine), Axid® (nizatidine), Carafate®(sucralfate), Pepcid®”

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!

Opting Out of Dialysis

Last week, Steve Belcher RN interviewed me on his new podcast Health Talk: Conversations For A Better Life Podcast. During the podcast, he mentioned Renal Conservative Therapy. I didn’t know what that was. Listeners’ questions about it started appearing on the screen, too. Of course, it then became clear what the topic of today’s blog would be.

As to what Renal Conservative Therapy is, let’s turn to the UK’s National Kidney Foundation for their easily understood explanation:

“The aim of treatment conservative care is your wellbeing and quality of life.

Conservative care (also called supportive care) aims to:

• treat and reduce any physical symptoms of CKD such as:
– tiredness
– feeling sick
– itching
– swelling and breathlessness

• protect and maintain any remaining kidney function (where possible) by:
– controlling your blood pressure
– changes to your diet
– changes to your medication

• provide emotional, social and spiritual support
• plan for the future

Your care will be shared between the Renal Unit, your GP [Gail here: that’s what we call PCP or primary care provider here in the US.] and community services you may need. You will be seen in clinic, or have an appointment by telephone or video call, by a doctor and/or a specialist nurse, who will see you as little or as often as needed. The nurse specialist for supportive care will support you and your family at home and liaise with other services you may need.”

I understand what it means now, but honestly, I couldn’t figure out why anyone would choose this rather than dialysis or a transplant. Now, you’ve got to remember that I have neither been on dialysis nor had a transplant, so I didn’t really know what I was talking about.

The National Institute of Diabetes and Digestive and Kidney Diseases made the reasoning behind this choice clear to me:

“People who wish to focus their care on the quality of their life may choose conservative management.

For most people, dialysis may extend and improve quality of life. For others, this is not true. Dialysis may not lengthen life for all people who have kidney failure and can feel like an added burden, especially for people who have other serious health problems. Dialysis may not prolong or improve the quality of life for people who

• are elderly and frail
• have other serious health problems, such as dementia, heart failure, or cancer”

I couldn’t help but wonder if choosing Renal Conservative Therapy would shorten your life. I turned to KidneyCare UK for help in answering my question:

“It is difficult to be accurate about life expectancy, as this depends on your individual medical conditions, general level of health and the speed that your kidney disease has progressed.”

I found that interesting since some trusted sites mentioned a year or two, while others made it clear that your age, general health, comorbidities, and living conditions all will affect how long you may live with Renal Conservative Therapy.  

Steve mentioned that Renal Conservative Therapy is not palliative care. The National Institutes of Health explained why:

“You may hear conservative management called comprehensive conservative care, supportive care, nondialytic care, and comfort care. You also might hear the term ‘palliative care,’ which is one part of conservative management. Palliative care addresses the physical, psychological, and spiritual needs of someone with a serious illness.”

Frankly, I found this confusing since some of the sites I looked at considered the two to be synonymous.

Hospice kept popping up in my searches. That made no sense to me since Renal Conservative Therapy is to keep you comfortably alive as long as possible, while hospice exists to help you die comfortably. Back to The National Institute of Diabetes and Digestive and Kidney Diseases for a definition of hospice:

“Hospice is a program of care and support for people at the end of life. A trained team of health professionals and caregivers provide symptom and pain relief as well as emotional and spiritual support. The hospice team also supports family caregivers.

With hospice care, you may choose to die at home or in a home-like hospice setting instead of in a hospital.

Medicare, the federal health insurance program, covers hospice care.”

What we’ve figured out here is that Renal Conservative Therapy is not hospice and may or may not be considered palliative care depending upon your source.

Let’s see what else I can find out about Renal Conservative Therapy for us. PubMed seems to summarize the information I’d been looking for:

“At a certain point, patients with kidney failure will need to decide whether or not to start kidney replacement therapy, i.e. dialysis or kidney transplantation. An increasing number of patients choose to forgo dialysis or transplantation and opt for conservative care. In part, this trend is explained by the ageing population of patients with kidney failure and a more limited survival benefit for dialysis in older patients. Conservative care is a holistic, patient-orientated treatment, aimed at quality of life, advance care planning, reducing symptom burden, and slowing the deterioration of kidney function. As such, conservative care is an active treatment and not merely forgoing kidney replacement therapy….”

I’m interested in the history of this type of kidney failure treatment but was unable to find any information about that. Please let me know if you have any information about this. However, the following from the Mayo Clinic posted last month may be a clue:

“If your kidneys can’t keep up with waste and fluid clearance on their own and you develop complete or near-complete kidney failure, you have end-stage kidney disease. At that point, you need dialysis or a kidney transplant.

• Dialysis. Dialysis artificially removes waste products and extra fluid from your blood when your kidneys can no longer do this. In hemodialysis, a machine filters waste and excess fluids from your blood.

In peritoneal dialysis, a thin tube inserted into your abdomen fills your abdominal cavity with a dialysis solution that absorbs waste and excess fluids. After a time, the dialysis solution drains from your body, carrying the waste with it.

• Kidney transplant. A kidney transplant involves surgically placing a healthy kidney from a donor into your body. Transplanted kidneys can come from deceased or living donors.

After a transplant, you’ll need to take medications for the rest of your life to keep your body from rejecting the new organ. You don’t need to be on dialysis to have a kidney transplant.

For some who choose not to have dialysis or a kidney transplant, a third option is to treat your kidney failure with conservative measures. Conservative measures likely will include symptom management, advance care planning and care to keep you comfortable (palliative care).”

Notice that conservative measures, what we’ve been referring to as Renal Conservative Therapy, is treated as an add on rather than an established therapy.

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: Peed; peeing. 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: Pissed; pissing…. “

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 disease, kidney 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!

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!

Needling You

I haven’t had a kidney biopsy, but many of my readers have. One of them requested a blog about kidney biopsies. Looks like I’m going to learn along side of you again. Frankly, I enjoy the learning.

Okay now, what is a kidney biopsy? Obviously, whatever it is is performed on the kidney. Here’s how MedlinePlus explains the biopsy part of that phrase:

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

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

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

Let’s see how a kidney biopsy is performed, courtesy of RadiologyInfo:

“Most areas of the body can be biopsied with a needle device. This is the least invasive option, and usually allows for the patient to return home the same day. Imaging guidance with x-ray, ultrasound, CT or MRI allows for accurate placement of the needle to locate the best place to take a tissue sample.

In hard to reach places, biopsies using surgery in a hospital operating room may sometimes be necessary. A surgeon will perform surgery to remove the tissue needed for the biopsy. The surgeon may use an instrument with a camera to help locate the best place to biopsy and remove the tissue sample.

Using imaging guidance, the doctor inserts the needle through the skin and advances it into the lesion.

They will remove tissue samples using one of several methods.

• In a fine needle aspiration, a fine gauge needle and a syringe withdraw fluid or clusters of cells.
• In a core needle biopsy, the automated mechanism moves the needle forward and fills the needle trough, or shallow receptacle, with ‘cores’ of tissue. The outer sheath instantly moves forward to cut the tissue and keep it in the trough. This process is repeated several times.
• In a vacuum-assisted biopsy, the doctor inserts the needle into the site of abnormality. They activate the vacuum device, which pulls the tissue into the needle trough, cuts it with the sheath, and retracts it through the hollow core of the needle. The doctor may repeat this procedure several times.”

There’s quite a bit of medical terminology in the blog so far, so I concocted a little dictionary for us. Of course, I used my favorite dictionary [Let me know if you’re tired of me saying that.], the Merriam-Webster.

CT: a method of producing a three-dimensional image of an internal body structure by computerized combination of two-dimensional cross-sectional X-ray images. abbreviation CT. called also computed axial tomography, computerized axial tomography, computerized tomography

MRI: magnetic resonance imaging  –  a noninvasive diagnostic technique that produces computerized images of internal body tissues and is based on nuclear magnetic resonance of atoms within the body induced by the application of radio waves [Gail here: this is the one where you have to make sure you’re not wearing anything with metal in it.]

Ultrasound: 1 – vibrations of the same physical nature as sound but with frequencies above the range of human hearing 2 – the diagnostic or therapeutic use of ultrasound and especially a noninvasive technique involving the formation of a two-dimensional image used for the examination and measurement of internal body structures and the detection of bodily abnormalities. called also sonography, ultrasonography

x-ray: 1 – any of the electromagnetic radiations that have an extremely short wavelength of less than 100 angstroms and have the properties of penetrating various thicknesses of all solids, of producing secondary radiations by impinging on material bodies, and of acting on photographic films and plates as light does 2 – a photograph obtained by use of X-rays.

But we’ve got kidney disease. There’s something you should know about the contrast that may be ordered along with your CT if that’s the guiding imagery your doctor will be using to perform the biopsy. For example, I have a CT with contrast every six months to make sure the cancer hasn’t returned. Because I have kidney disease, a blood test comes first to find my creatinine level. If it’s over 1.1, no contrast would be used. This is the purpose of the contrast:

“In a CT scan, dense substances like bones are easy to see. But soft tissues don’t show up as well. They may look faint in the image. To help them appear clearly, you may need a special dye called a contrast material. They block the X-rays and appear white on the scan, highlighting blood vessels, organs, or other structures.

Contrast materials are usually made of iodine or barium sulfate. You might receive these drugs in one or more of three ways:

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

Thankyou for the above information, WebMD.

Hmm, since I haven’t had any, I wondered what the purpose of kidney biopsies was. The National Kidney Foundation tells us:

• “Blood (hematuria) or protein (proteinuria) in the urine 
• Abnormal blood test results
• Acute or chronic kidney disease (CKD) with no clear cause
• Nephrotic syndrome and glomerular disease (which happens when the filtering units of the kidney are damaged)
• See if kidneys are responding well to treatment
• Check if kidneys are permanently damaged
• Learn why a transplanted kidney is not working well
• See if a kidney tumor is cancerous
• Check for other unusual or special conditions
• See if any medications are hurting your kidneys”

There’s so much more to know about a kidney biopsy, but I’ve just plain run out of room today.

Until next week,

Keep living your life!

Uncertainty

Leesa Thompson, a recent guest blogger on SlowItDownCKD, and I were going back and forth about transplant. She’s had one; I haven’t. I finally asked her how she felt when she was told she needed one. She answered, “Uncertainty!”… and that became today’s blog. 

Gail seems to start with the dictionary. I seem to start with Facebook (fb).  

On my fb group, KidneyStories, I asked the question, “How did you feel when you first heard that you needed a kidney transplant?” The answers were as varied as the people. They ranged from tears of sadness to tears of joy and all kinds of tears in between. The sadness was primarily from thinking that life was over. The joy was from trusting that being approved for a kidney transplant would mean the opportunity of renewed life. My range of emotions spanned the same gamut.  

I felt very uncertain the day that I first found out that I’d either need dialysis or a transplant. My doctor was holding his copy of my labs and I had mine. He went carefully over each number. Some had gone up and others down. He looked at me with concern and said, “According to these numbers, the time has come.”  

I started to shake and cry uncontrollably. My partner escorted me to the car where I just kept crying. There was nothing he could do or anyone else could do. I just couldn’t stop crying.  I noticed the metal taste in my mouth and started feeling nauseous. My body was clearly full of toxins. Sweat was pouring from my limp body. My partner said nothing. I was hoping he’d say something reassuring but there was nothing reassuring to say. Finally, he asked, “Do you want to go home?”  

“No!” I said, “let’s get a strong drink”. We drove to a nearby bar and tried to drown my troubles. There really was no easy answer, but I was going to die if I didn’t get an answer soon. I either needed to have a kidney transplant or start dialysis. Neither choice was going to be a good one.  

Would I find a donor? How? Who? What if I didn’t? Would I be able to do dialysis long enough to wait for a donor? What would happen if I just did hospice? How lousy would I feel and for how long? These thoughts kept racing through my head. Diiiialysis. It would be best just to be out of pain and end it all. 

I posted my plight on fb. My friend answered very quickly and put me in touch with his friend who instilled confidence in me. He told me about getting his kidney six months earlier. He said I needed to focus on why my life was worth living … write a story about who I am and why someone should care about saving my life. Not necessarily by giving me their kidney, but by sharing the compelling story on my website. He helped reframe my thinking.  

Considering that this is Mental Health Month, let’s stay focused on the mental turmoil. As days slowly passed by, I found that when I was accomplishing what was within my control, I was ok for a few minutes. However, most tasks that needed my attention would shortly become frustrating and I burst into tears or rage, sometimes both at the same time. I knew myself well enough to know that I couldn’t get through these feelings alone.  

I called the mental health number on my insurance card. They put me in touch with a kind, compassionate male therapist roughly my age. He had me come to his office where I tried telling him what was going on and did a lot of crying. He was always very honest. He didn’t have answers and wasn’t going to be my cheerleader. However, he was going to be there for me, to listen and give me a safe place to cry, yell, rant, complain, help me plan and support me while I got through this.  

He made it clear that if I chose to give up, he wasn’t going to stop me but that he hoped that the strategies he provided would help me get through whatever came. Looking back, it seems that when I spent time ruminating on the “what ifs?” I’d end up in a corner with no way out. However, if I could stay focused on the task and carry out something – no matter how small – I’d gradually move forward. Then, if I kept track of these minute accomplishments it would give me hope that I could accomplish the next small task. He also helped me think of additional solutions and resources for completing the next set of tasks.  

By staying focused on what I was able to control and getting those goals met instead of focusing on the things that I could not control I was able to reach the finish line. It was helpful to have him check in weekly. I suggest that if you’re struggling emotionally as I was, you might want to do the same.  

I was part of District 46 Toastmasters Conference’s panel on mental health this year. A presenter described a five-minute meditation program that is worth mentioning. It seems that there are quite a few versions of this technique. The one I like is free on YouTube. It’s called 5-Min Relaxing Meditation to Open Your Heart by John Davisi. Research shows that this really works. I also find keeping a journal, especially a gratitude journal, helpful in reminding myself that in spite of my daily struggle there’s a lot to be grateful for. 

I hope these few techniques will help you get through and beyond this difficult part of your journey. I believe you’ll find that whatever challenges you’re facing, you can find a way to live your best life ever! 

Never having been in this position, there’s nothing I can add to Leesa’s blog. But, I do appreciate the bit of insight into the mind of someone who’s been told they need a transplant. 

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!

Soooo Tired…

That’s been my refrain as a chronic kidney disease patient Stage 3 for the past 15 years. It made sense to me that dialysis patients might also be tired. But it simply hadn’t occurred to me that those with transplants might also feel fatigued. That is, until a reader asked why she was always so tired after her transplant. 

Ah, I see you caught that I’m using tired and fatigued interchangeably. Let’s go over to my favorite dictionary, the Merriam Webster, for their definitions.  

Tired “drained of strength and energy: fatigued often to the point of exhaustion” 

Fatigued “drained of strength and energy “ 

Okay, now that we’ve established that they are synonymous, what do they have to do with those who had been transplanted? An article presented at the American Transplant Congress concluded: 

“Fatigue is common in adults undergoing KT but improves over the first 7 months after transplantation. Additionally, live donor recipients tend to improve their fatigue scores faster than deceased donor recipients.” 

KT is Kidney Transplantees. 

But what about those who are still fatigued past the seven months mentioned above? Another article, this time on Lippincott Medicine, gives us some insight into how little is known: 

“Fatigue is an extremely common symptom among kidney transplant recipients (KTRs), with prevalence ranging from 39% to 59%…. Fatigue can be described as an awareness of negative balance between available energy and the cost in physical, cognitive, emotional, or/and functional components. Patients with fatigue have more functional impairments and poorer quality of life…. However, it is often medically unexplained, clinically underestimated, and usually undertreated.” 

We can’t stop here, leaving those who are fatigued after kidney transplantation hanging. Come to think of it, the same Lippincott article suggested that vitamin D may be helpful, but it’s not known why. 

Another possible cause of this fatigue is diabetes. This is what England’s National Health Service has to say about diabetes and being tired after a kidney transplant: 

“Diabetes is a common complication of having a kidney transplant.   

Diabetes is a lifelong condition that causes a person’s blood sugar level to become too high. Some people develop it after a kidney transplant because, as they no longer feel unwell, they eat more and gain too much weight. Some types of immunosuppressants can also make you more likely to develop diabetes. 

Symptoms of diabetes include: 

• feeling very thirsty 
• peeing a lot, especially at night 
• tiredness” 

Or could it be depression and/or sleep disorders which cause the fatigue? The National Center for Biotechnology  seems to think that could be true: 

“Fatigue is a frequent and underestimated symptom of kidney transplant recipients. However, a significant lower rate of fatigue is observed in KTR patients compared with HD ones. The mechanisms underlying this symptom in KTR patients are essentially unknown. Fatigue is significantly associated with symptoms of depression and/or sleep disorders, is extremely debilitating and significantly impairs the quality of life while it remains unknown if it increases the risk of mortality. There is some evidence that fatigue may be improved by exercise.”   

Remember the Lippincott article suggested vitamin D might be helpful? Now we have another possible avenue of improvement: exercise. 

WebMD opened my eyes to the possible side effects of your anti-rejection medication: 

“Here’s a general list of some of the side effects you might have: 

Photo by Andrea Piacquadio on Pexels.com

• Nausea and vomiting 
• Diarrhea 
• Headache 
• High blood pressure 
• High cholesterol 
• Puffy face 
• Anemia 
• Arthritis 
• Weakened bones 
• Increased appetite 
• Weight gain 
• Trouble sleeping 
• Mood swings 
• Swelling and tingling of the hands and feet 
• Acne and other skin problems 
• Tremors 
• Hair loss or unwanted hair growth 
• Diabetes” 

Let’s take a good look at these. We already mentioned diabetes and trouble sleeping might contribute to the after kidney transplant fatigue. Nausea? Vomiting? Diarrhea? Have you ever had gastroenteritis [stomach flu]? Remember feeling like you just couldn’t move? That’s a cause of fatigue, too. The same with anemia. You’re tired beyond tired. 

I’m sure you’re aware of my persistent use of possible and possibly in today’s blog. That’s because there’s not much known about the causes of long term fatigue after having had a kidney transplant. Then I wonder about fatigue itself as a cause of further fatigue. You’ve probably seen this transplant as a means to an end of your dialysis fatigue and now that hasn’t happened. Your depression about that may be a contributing factor. 

A lot of this is conjecture on my part. We all know I’m not a doctor and don’t pretend to be. Now keep in mind that I’ve never had an organ transplant [ although I’ve had the opposite and am now missing my spleen, gall bladder, and ¾ of my pancreas!]. I’ve also never been on dialysis. So here you have the research I was able to unearth and my own speculation. I did want to mention that I discovered several studies suggesting that psychotherapy might be helpful. 

Ugh! Another difficult blog to write that ended with no definitive findings. I suppose as a lay person, my best advice would be to explore each of the possible causes [and treatment of] long term fatigue after your kidney transplant with your transplant team. Here’s hoping I’ve given you enough information to open this particular conversation with them. 

Until next week, 

Keep living your life! 

Finding A Living Donor

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

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

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

Say what? 

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

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

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

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

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

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

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

1. It’s completely free. 

2. The design is simple and informative. 

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Talk about Variations!

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

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

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

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

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

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

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

“Hepatitis C is connected to CKD because: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The following symptoms may occur with HCV infection: 

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

aHus is …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

TRIGGERS VS. THE CAUSE 

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

Photo by Andrea Piacquadio on Pexels.com

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

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

” The FDA has approved two drugs to treat aHUS: 

Eculizumab (Soliris) 

Ravulizumab (Ultomirus) 

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Meet Me at the Meeting

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

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

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

Founded by Patients for Patients 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

They Go Together

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

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

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

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

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

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

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

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

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

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

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

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

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

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

MedlinePlus succinctly provided the answer: 

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Nailed It!

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

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

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

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

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

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

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

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

I found this on ResearchGate: 

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

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

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

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

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

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

Onychomycosis in Patients with Chronic Renal Failure 

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

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

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

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

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

Beau’s lines 

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

Ridged nails 

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

White streaks/spots 

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

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

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

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 3

Here’s hoping you had a nice, quiet, safe July 4^th, Canada Day, or whatever holiday your country celebrates. Here’s hoping you were able to adhere to your renal diet, too. As I told one reader years ago when she was overwhelmed by the dietary changes she had to make, make one change at a time if you have to. You’ll get there. 

Let’s see now. This topic has definitely turned into a series instead of a two parter. In the last two blogs, I wrote about the three ‘p’s as I called them in my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. These are phosphorous, potassium, and protein. Guess that leaves the one ‘s’ in the renal diet. I made mention last week that sodium and salt are not exactly the same thing, so let’s look at that first.  

Thank you to WebMd for this explanation: 

“Sodium is a type of metal that is always found as a salt. The most common dietary form is sodium chloride. Sodium chloride is commonly called table salt. 
 
Table salt accounts for 90% of dietary sodium intake in the US. Sodium helps to balance levels of fluids and electrolytes in the body. This balance can affect blood pressure and the health of the kidneys and heart.”   

A usual restriction for CKD patients is 2000 mg./day. That’s where I am, too. Although, I have seen 2,300 mg./day for men.

Hmmm, how does sodium “affect blood pressure and the health of the kidneys and heart.” The more I blog, the more I want to know the how. I turned to The American Stroke Association: 

“’With the circulatory system, salt’s effects are a very simple plumbing problem,’ said Dr. Fernando Elijovich, a professor of medicine at Vanderbilt University. 

The heart is the pump and blood vessels are the pipes, he said. Blood pressure goes up if you increase how much blood has to move through the pipes. Blood pressure also rises if you shrink those pipes. 

Salt does both. When there’s excess salt in your system, the heart pumps more blood in a given time, boosting blood pressure. And over time, salt narrows the vessels themselves, which is the most common ‘plumbing’ feature of high blood pressure. 

The harm can come quickly. And over time. 

Within 30 minutes of eating excess salt, your blood vessels’ ability to dilate is impaired, Elijovich said. The damage from persistent high blood pressure shows up down the road, in the form of heart attacks, strokes and other problems. 

The good news, Laffer said, is the benefits of cutting back on excess salt also show up quickly. If you significantly reduce how much salt you eat, your blood pressure goes down within hours or days.” 

Wow, you can actually visualize this. 

Did you remember that high blood pressure is one of the leading causes of CKD? With CKD, your kidneys do not function well and filter out less sodium. This seems circular. You develop high blood pressure from too much sodium and then develop chronic kidney disease. Your kidneys no longer effectively function so you excrete less sodium… which raises your blood pressure even more.  

This much I know because I’m stage 3A CKD. I was 3B when I wrote the first two parts of this series. I believe increased hydration brought me up to 3A again, but that has nothing to do with sodium. Or does it? 

And in dialysis? DaVita Kidney Care has this to say about sodium restriction in dialysis: 

“If you have stage 5 CKD and require dialysis, you will be asked to follow a low-sodium diet. The diet will help control blood pressure and fluid intake. Controlling sodium intake will help avoid cramping and blood pressure drops during dialysis. Your dietitian will determine how much sodium you can eat each day and counsel you on regulating it in your diet.” 

Finally, let’s look at sodium restrictions for transplantees. I automatically went to the National Kidney Foundation: 

“Most people still need to limit salt after they get a transplant, although it is different with each person. Transplant medicines, especially steroids, may cause your body to hold on to fluid, and salt makes this problem worse. Increased fluid in the body raises blood pressure. Controlling blood pressure is very important to your transplant. Your doctor will decide how much sodium is best for you. It is a good idea to limit foods high in salt, such as: 

Table salt 

Cured meats, such as ham, bacon, and sausage 

Lunch meats, such as bologna, salami, and hot dogs 

Pre-packaged frozen dinners 

Ramen noodles, boxed noodles, and potato and rice mixes 

Canned soups and pasta sauce 

Pickled foods, such as olives, pickles, and sauerkraut 

Snack foods, such as salted chips, nuts, pretzels, and popcorn” 

I love learning as I write these blogs. The thing that surprised me most was why dialysis patients need to restrict their sodium intake. I think I need to learn more about dialysis. 

Back to The National Kidney Foundation to end this week’s blog with this informative chart: 

Limit the Amount of…	Food to Limit Because of their High Sodium Content	Acceptable Substitutes
Salt & Salt Seasonings	Table salt Seasoning salt Garlic salt Onion salt Celery salt Lemon pepper Lite salt Meat tenderizer	Fresh garlic, fresh onion, garlic powder, onion powder, black pepper, lemon juice, low- sodium/salt-free seasoning blends, vinegar
Salty Foods	High Sodium Sauces such as: Barbecue sauce Steak Sauce Soy sauce Teryaki sauce Oyster sauce Salted Snacks such as: Crackers Potato chips Corn chips Pretzels Tortilla chips Nuts Popcorn Sunflower seeds	Homemade or low-sodium sauces and salad dressings; vinegar; dry mustard; unsalted crackers, popcorn, pretzels, tortilla, or corn chips
Cured Foods	Ham Salt pork Bacon Sauerkraut Pickles, pickle relish Lox & Herring Olives	Fresh beef, veal, pork, poultry, fish, eggs
Luncheon Meats	Hot Dogs Cold cuts, deli meats Pastrami Sausage Corned beef Spam	Low-salt deli meats (if you need to limit phosphorus, these are likely high in phosphorus)
Processed Foods	Buttermilk Cheese Canned: Soups Tomato products Vegetable juices Canned vegetables Convenience Foods such as: TV Dinners Canned raviolis Canned Chili Packaged Macaroni & Cheese Canned Spaghetti Commercial mixes Frozen prepared foods Fast foods	Natural cheese (1-2 oz per week)         Homemade or reduced-sodium soups, canned food without added salt         Homemade casseroles without added salt, made with fresh or raw vegetables, fresh meat, rice, pasta, or no added salt canned vegetables

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 2

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

That’s an easy transition to writing about your kidney [renal] diet no matter if you’re a chronic kidney disease stages 1-5 patient, a dialysis patient, or a transplantee. Last week, I wrote about two of the three p’s as I called them in my first CKD book What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Those are the electrolytes potassium and phosphorous. 

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

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

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

The amount of water in your body 

The acidity of your blood (pH) 

Your muscle function 

Other important processes 

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

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

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

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

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

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

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

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

The amount of protein you need is based on: 

your body size 

your kidney problem  

the amount of protein in your urine 

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

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

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

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

Reminder: albuminuria and proteinuria are not the same thing. 

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

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

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

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

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

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

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

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

eggs 

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

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

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

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

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 1

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

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

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

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

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

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

“Many fresh fruits and vegetables are rich in potassium: 

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

Cooked spinach 

Cooked broccoli 

Potatoes 

Sweet potatoes 

Mushrooms 

Peas 

Cucumbers 

Zucchini 

Pumpkins 

Leafy greens …

Photo by Pixabay on Pexels.com

Orange juice 

Tomato juice 

Prune juice 

Apricot juice 

Grapefruit juice 

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

Some fish contain potassium: 

Tuna 

Halibut 

Cod 

Trout 

Rockfish 

Beans or legumes that are high in potassium include: 

Lima beans 

Pinto beans 

Kidney beans 

Soybeans 

Lentils 

Other foods that are rich in potassium include: 

Salt substitutes (read labels to check potassium levels) 

Molasses 

Nuts 

Meat and poultry 

Brown and wild rice 

Bran cereal 

Whole-wheat bread and pasta” 

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

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

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

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

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

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

Phosphorus additives found in foods include: 

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

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!  

Chronic Kidney Disease Changed My Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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

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

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

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

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

This time my favorite dictionary came through: 

“the material that passes through the membrane in dialysis” 

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

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

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

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

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

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

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

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

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

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

MyHealth.Alberta.ca answers that question: 

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

Uremia and fluid overload can cause: 

you to feel weak and tired all the time 

shortness of breath 

high blood pressure between dialysis treatments 

blood pressure to go down or drop during dialysis 

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

higher risk for infection 

problems with bleeding 

poor appetite, nausea, and real weight loss 

inability to tolerate exercise 

a bitter taste in your mouth 

yellow skin 

itchy skin” 

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

There are two types of dialysis. WebMD defines them: 

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

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

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

“A DaVita spokesperson wrote: 

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

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

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

Rest assured. You are being well taken care of. 

Until next week, 

Keep living your life! 

Say It Out Loud

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

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

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

JOIN THE VIRTUAL KIDNEY STORIES TOASTMASTERS CLUB AND IMPROVE YOUR ADVOCACY  

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

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

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

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

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

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

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

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

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

Photo by Mikhail Nilov on Pexels.com

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

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

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

Until next week, 

Keep living your life! 

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: 

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“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! 

Born with Kidney Disease

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

Photo by Daniel Reche on Pexels.com

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!                                                                                                                    

Feeling Bookish

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Only Two Weeks Left

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

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

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

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

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

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

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

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

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

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

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

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

“MISSION STATEMENT 

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

VISION STATEMENT 

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

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

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

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

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

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

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

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

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

Why join a CKD support group 

Joining a support group will allow you to: 

Safely share your emotions 

Hear firsthand experiences of living with the disease and its treatments 

Trade coping mechanisms 

Receive encouragement 

Feel connected, understood, and empowered” 

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

Newsfeed 

New For Me 

My Notebook 

My Topics 

Dictionary 

Suggest An Article  

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

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

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

Until next week, 

Keep living your life! 

Prednisone, Too?

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

Photo by Artem Podrez on Pexels.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Focal glomerulosclerosis (FSGS) 

Minimal change disease (MCD) 

IGA nephropathy 

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

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

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

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

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

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

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

“Why does it happen?  

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

The facts  

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

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

Photo by EKATERINA BOLOVTSOVA on Pexels.com

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

Until next week, 

Keep living your life!  

That’s Harsh

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

“The spleen has some important functions:  

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

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

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

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

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

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

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

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

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

Photo by Kindel Media on Pexels.com

“IMPORTANT WARNING: 

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

A New Pregnancy and a New Diagnose

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

What It’s Like To Be A Kidney Donor

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

Ladies and gentlemen, this was Amy’s experience.

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

Amy and TinyMom

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

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

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

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

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

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

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

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

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

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

This was meant to be. 

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

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

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

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

Thank you, Amy. Now we know. 

Until next week,

Keep living your life!

 

The Other Side of the Coin

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You won’t need lifelong medicines 

You can eat the same things you did before donation 

You can be active and play sports 

You can still get pregnant or father a child 

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

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

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

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

Until next week, 

Keep living your life!  

There is Help

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

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

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

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

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

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

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

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

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

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

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

The age of the recipient 

Blood type of the donor and recipient 

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

How urgent it is for the recipient to get a kidney 

How long the recipient has been waiting for a kidney 

The distance of the recipient from the donor kidney” 

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

“What is a Kidney Swap? 

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

This can also be done among three pairs.” 

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

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

Advanced age 

Severe heart disease 

Active or recently treated cancer 

Dementia or poorly controlled mental illness 

Alcohol or drug abuse” 

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

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

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

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

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

Until next week, 

Keep living your life! 

Never Heard of It Before

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

Photo by Cristian Dina on Pexels.com

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

On to the kidney part of today’s blog. 

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

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

As reported in BMC Nephrology last year:  

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

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

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

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

Photo by Pixabay on Pexels.com

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

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

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

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

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

Breaking Down the Facts on Activated Charcoal 

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

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

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

Photo by fotografierende on Pexels.com

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

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

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

The Bottom Line 

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

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

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

Until next week, 

Keep living your life! 

To Biopsy or Not to Biopsy

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

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

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

For those who don’t recognize the term: 

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

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

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

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

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

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

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

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

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

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

“A kidney biopsy may be done to: 

Diagnose a kidney problem that can’t otherwise be identified 

Help develop treatment plans based on the kidney’s condition 

Determine how quickly kidney disease is progressing 

Determine the extent of damage from kidney disease or another disease 

Evaluate how well treatment for kidney disease is working 

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

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

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

●Blood in the urine (called hematuria). … 

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

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

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

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

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

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

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

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

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

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

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

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

Now I know… and so do you. 

Until next week, 

Keep living your life! 

What About My Kids?

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

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

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

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

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

Thin Basement Membrane Disease 

Gitelman and Bartter Syndromes 

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

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

Hereditary Interstitial Kidney Disease: Gout associated inherited kidney diseases 

Tuberous Sclerosis 

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

Fabry Disease 

Nephronophthisis” 

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

How Is It Done?

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

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

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

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

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

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

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

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

“Generally, a kidney transplant follows this process: 

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

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

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

A urinary catheter will be inserted into your bladder. 

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

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

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

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

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

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

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

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

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

The incision will be closed with stitches or surgical staples. 

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

A sterile bandage or dressing will be applied.” 

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

“Short-term complications 

Infection 

Blood clots 

Narrowing of an artery 

Arterial stenosis can cause a rise in blood pressure.  

Blocked ureter 

Urine leakage 

Acute rejection 

Long-term complications 

Immunosuppressant side effects: 

an increased risk of infections 

an increased risk of diabetes 

high blood pressure 

weight gain 

abdominal pain 

diarrhoea 

extra hair growth or hair loss 

swollen gums 

bruising or bleeding more easily 

thinning of the bones 

acne 

mood swings 

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

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

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

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

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

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

high blood pressure 

Proteinuria 

Reduced kidney function” 

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

“Medical bills 

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

Testing 

Surgery 

Hospital stay 

Follow-up care related to donation 

Personal bills 

Paid vacation and sick leave… 

Tax deductions and credits… 

Time off… 

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

Short-term disability insurance… 

FMLA (Family and Medical Leave Act) … 

NLDAC (National Living Donor Assistance Center) … 

AST (American Society of Transplantation) … 

Other 

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

Travel 

Housing 

Childcare” 

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

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

Until next week, 

Keep living your life!