Listen: This is Going to be a Long One. In Other Words, Part Two

Before we do anything else, Happy Birthday Nima (My New York Daughter). Okay, now we can start. Last week, we read the first part of Jim Myers’ guest blog about hearing loss and the kidneys. I promised then that we would finish his guest blog next week. This is next week, so take it away, Uncle Jim.

Hearing Loss and Meniere’s Disease

A Balance Assessment will take place.

Between vertigo attacks, balance returns to normal for most people with Meniere’s disease. But you might have some ongoing balance problems.

Tests that study how well the inner ear is working include:

Electronystagmogram or videonystagmography (ENG or VNG). These tests measure balance by studying eye movement. One part of the test looks at eye movement while your eyes follow a target. One part studies eye movement while your head is put in different positions. A third test, called the caloric test, follows eye movement by using temperature changes to trigger a reaction from the inner ear. Your healthcare provider may use warm and cold air or water in the ear for the caloric test.

No cure exists for Meniere’s disease. Some treatments can help lessen how bad vertigo attacks are and how long they last. But there are no treatments for permanent hearing loss. Your healthcare provider may be able to suggest treatments that prevent your hearing loss from getting worse.

Treatment Methods include:

Medicines for vertigo

Your healthcare provider may prescribe medicines to take during a vertigo attack so that it’s less severe:

• Motion sickness medicines. Medicines such as meclizine (Antivert) or diazepam (Valium) may lessen the spinning feeling and help control nausea and vomiting.
• Anti-nausea medicines. Medicines such as promethazine might control nausea and vomiting during a vertigo attack.
• Diuretics and betahistine. These medicines can be used together or alone to improve vertigo. Diuretics lower how much fluid is in the body, which may lower the amount of extra fluid in the inner ear. Betahistines ease vertigo symptoms by improving blood flow to the inner ear.

Long-term medicine use

Your healthcare provider may prescribe a medicine to reduce fluid retention and suggest limiting your salt intake. This helps control the intensity and amount of Meniere’s disease symptoms in some people.

Noninvasive therapies and procedures

Some people with Meniere’s disease may benefit from procedures that don’t include surgery, such as:

• Rehabilitation. If you have balance problems between vertigo attacks, vestibular rehabilitation therapy might improve your balance.
• Hearing aid. A hearing aid in the ear affected by Meniere’s disease might improve your hearing. Your healthcare provider can refer you to an ear doctor, also called an audiologist, to talk about the best hearing aids for you.

If conservative treatments aren’t successful, your care provider might suggest more-intense treatments.

Middle ear injections

Medicines injected and absorbed in the middle ear may help vertigo symptoms get better. This treatment is done in a care provider’s office. Injections can include:

• Gentamicin. This is an antibiotic that’s toxic to your inner ear. It works by damaging the sick part of your ear that’s causing vertigo. Your healthy ear then takes on the job for balance. But there is a risk of further hearing loss.
• Steroids. Steroids such as dexamethasone also may help control vertigo attacks in some people. Dexamethasone may not work as well as gentamicin. But it’s less likely to cause further hearing loss.

Surgery

If vertigo attacks from Meniere’s disease are severe and hard to bear and other treatments don’t help, surgery might be an option. Procedures include:

• Endolymphatic sac surgery. The endolymphatic sac helps control inner ear fluid levels. This procedure relieves pressure around the endolymphatic sac, which can improve fluid levels. Sometimes, a care provider places a tube inside your ear to drain any extra fluid.
• Labyrinthectomy. With this procedure, the surgeon removes the parts of your ear causing vertigo, which causes complete hearing loss in that ear. This allows your healthy ear to be in charge of sending information about balance and hearing to your brain. Care providers only suggest this procedure if you have poor hearing or total hearing loss in the diseased ear.
• Vestibular nerve section. This procedure involves cutting the vestibular nerve to prevent information about movement from getting to the brain. The vestibular nerve sends balance and movement information from your inner ear to the brain. This procedure usually improves vertigo and keeps hearing in the diseased ear. Most people need medicine that puts them in a sleep-like state, called general anesthesia, and an overnight hospital stay.

What illness causes hearing damage?

Certain diseases can cause hearing loss, including meningitis, mumps, cytomegalovirus and chickenpox. Severe cases of jaundice can also cause hearing loss. other causes – other causes of deafness include Meniere’s disease and exposure to certain chemicals.

There is a significant relationship between CKD and Hearing Loss. One recent article states, “Patients with CKD are predisposed to several otorhinolaryngological issues especially SNHL, and the link between SNHL (sensorineural hearing loss)
and CKD has both been extensively explained, but the relationship between the remaining complications and CKD is still unknown.”

In plain English, if you suffer from CKD, you should get your hearing checked, and if you have any symptoms that we have discussed today, you may wish to consult with an otolaryngologist.

“Plate 13. Surgical anatomy ear“/ CC0 1.0

Several studies  harmful effects of chronic kidney disease (CKD) on the audiovestibular system. This would include a connection between Chronic Kidney Disease and Meniere’s Disease. Patients with CKD had a significantly increased incidence of Ménière’s disease,

According to the Mayo Clinic, Meniere’s disease is an inner ear problem that can cause dizzy spells, also called vertigo, and hearing loss. Most of the time, Meniere’s disease affects only one ear.

Meniere’s disease can happen at any age. But it usually starts between the ages of 40 to 60. It’s thought to be a lifelong condition. But some treatments can help ease symptoms and lessen how it affects your life long term.

Symptoms of Meniere’s disease include:

• Regular dizzy spells. You have a spinning feeling that starts and stops suddenly. Vertigo may start without warning. It usually lasts 20 minutes to 12 hours, but not more than 24 hours. Serious vertigo can cause nausea.
• Hearing loss. Hearing loss in Meniere’s disease may come and go, especially early on. Over time, hearing loss can be long-lasting and not get better.
• Ringing in the ear. Ringing in the ear is called tinnitus. Tinnitus is the term for when you have a ringing, buzzing, roaring, whistling or hissing sound in your ear.
• Feeling of fullness in the ear. People with Meniere’s disease often feel pressure in the ear. This is called aural fullness.

After a vertigo attack, symptoms get better and might go away for a while. Over time, how many vertigo attacks you have may lessen.

To Diagnose Meniere’s, the physician will conduct an exam and asks about your health history. A Meniere’s disease diagnosis needs to include:

• Two or more vertigo attacks, each lasting 20 minutes to 12 hours, or up to 24 hours.
• Hearing loss proved by a hearing test.
• Tinnitus or a feeling of fullness or pressure in the ear.

Gail here: Jim has some really good resources if you’re interested. Let me know which area caught your interest.
Until next week,

Keep living your life!

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!

And the Nose…

Since I wrote about the ears and kidney disease last week, I got curious about the nose and kidney disease. Makes sense to me. If CKD can affect your hearing, why not your sense of smell? I was delighted to find out I wasn’t the only one interested in this.

Photo by Anastasia Shuraeva on Pexels.com

I started my inquiry with the Sage Journal which calls itself “Your gateway to world-class research.”  There I found a study originally published in Ear, Nose and Throat Journal that came to the following conclusion:

“The study has demonstrated that patients with CKD have prevalence of olfactory dysfunction, and it appears that the affectation was more at the central olfactory pathway. The severity of olfactory dysfunction increases with worsening severity of kidney disease. This finding will serve as basis to ensure olfactory function assessment is included as parts of routine evaluation of patients with CKD, with the aim of improving their overall well-being and quality of life.”

How very interesting. Therefore, if your kidneys become worse, so does your sense of smell. But why? Wait a minute. I never received an evaluation of my sense of smell at my nephrologist’s. Have you?

Let’s go back to seeing if we can figure out why our sense of smell is somehow attached to our kidney function. This is PubMed’s contribution to our search:

“Olfactory receptors (ORs) are chemosensors that are responsible for one’s sense of smell. In addition to this specialized role in the nose, recent evidence suggests that ORs are also found in a variety of additional tissues including the kidney. As this list of renal ORs continues to expand, it is becoming clear that they play important roles in renal and whole-body physiology, including a novel role in blood pressure regulation.”

As usual [Ah, you know me so well.] I needed more:

Science Digest included this information that may help:

Nefrologia (English Edition) points out the key points about loss of smell in kidney disease;

“Alterations in the olfactory function of patients with CKD in pre-dialysis, PD and HD are common, although little recognised.

• •

The tests most widely used for assessing olfactory function are odour threshold, discrimination and identification tests.

• •

One of the most important consequences of olfactory deficits is their association with the patient’s nutritional status.

• •

The effect of HD on smell is still not fully understood, as not all studies have shown correction of the deficit with treatment.

• •

Renal transplantation corrects dysosmia….” [Gail here. This is an altered perception of smell.]

While I find this fascinating, I wondered why it was important. The National Kidney Foundation had the answer:

“’Impairments in smell and taste have been linked with decreased appetite and food intake and can decrease the quality of life for affected patients,’ said Katherine Lynch, MD, a junior faculty member at Beth Israel Deaconess Medical Center. ‘The ability to smell and taste declines with age, but patients with chronic kidney disease tend to have earlier and greater decline in these senses than patients without kidney disease.’”

Dr. Lynch is studying the effects of smell and taste loss in order to identify ways to combat malnutrition and improve the lifestyle of patients with kidney disease. Her research is being supported by a Young Investigator’s Grant from the National Kidney Foundation.”

Umm, who said anything about taste. Let’s take a look at that, too. Kidneywise blew me away with their informative chart:

“Changes in CKD	Effects of change
Reduced saliva flow	Some studies have found that people with end-stage kidney disease have a reduced flow of saliva which may be caused by changes in fluid status. This can cause dry mouth which affects the taste buds.
Changes in saliva pH	Normal saliva is slightly acidic but some studies have shown that the saliva of people with end-stage kidney disease is more alkaline which can affect taste.
High levels of urea in saliva	People with end-stage kidney disease have higher levels of urea in their saliva than those with normal kidney function. This affects the perception of bitter taste, causing either an increase or a decrease in perception of bitter taste. It can also cause a metallic taste.
High levels of sodium in saliva	This can increase the salt taste threshold and can therefore cause a salty taste.
High levels of bicarbonate in saliva	This can cause a reduction in the intensity of savoury (umami) taste and may be one of the reasons for lack of interest in meat in many people with CKD.
High levels of  potassium in saliva	This can cause a metallic taste.
Lower levels of zinc in blood	Zinc deficiency can be as high as 40% in those receiving haemodialysis treatment. Zinc deficiency can lead to a reduction in overall taste.”

I started wondering if they had the same kind of chart for loss of smell. No such luck. On to how to treat loss of taste due to kidney disease. I crossed the pond [so to speak] and found what I was looking for on the National Health Service’s website:

“Food tastes
If your food tastes.	Tips
Bitter	Avoid foods sweetened with saccharin – this can leave a bitter aftertaste
Metallic	Gargle lemon juice before eating   Use plastic cutlery
Sweet	Add lemon juice to your water   Dilute drinks with soda or mineral water   Use spices such as ginger, nutmeg, and cinnamon to sugary foods/puddings to offset the sweetness
Salty	Avoid salty and processed foods   Add a pinch of sugar to food before serving
Aversion to meat/protein foods	Serve cold meats with pickle or chutney   Serve fish, chicken, and egg dishes with strong flavoured sauces i.e., curry, sweet and sour   Marinate meat in fruit juice or wine

More ideas to help you manage taste changes:

• Rinse your mouth or clean your teeth before meals.
• Suck on mints or chew gum.
• Use herbs and spices to add flavour e.g., pepper, cumin, and rosemary.
• Allow hot foods to cool down.
• If you are prescribed nutritional supplements, your dietitian may be able to recommend a sharper tasting variety, such as a juice or yoghurt style supplement.”

Well, that’s enough to absorb in one sitting. Let me know if you have specific questions and I’ll do my very best to answer them.

Until next week,

Keep living your life!

I Hear Ya

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

The National Library of Medicine helped in starting my research:

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

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

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

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

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

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

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

As usual, I wanted more information so I went to a site connected with hearing, Hearing Unlimited:

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

It almost sounds unreal – how could the ears share similarities with the kidneys? But research has confirmed that physiological mechanisms of fluid and electrolyte balance are present in both organs. This matters because it means that when a health issue affects the functionality of one (i.e. the kidneys or the ears), it’s likely to affect the other. So while hearing loss doesn’t cause CKD – or vice versa – patients with certain types of hearing loss are likely to experience problems with their kidneys (and vice-versa).”

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

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

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

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

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

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

MedlinePlus gives us an example one of the diseases involved:

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

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

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

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

“There are three types of hearing loss:

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

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

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

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

Until next week,

Keep living your life!

That’s Low

Just when I wonder if I’m going to run out of topics to write about, I receive a reader’s request. This week, I was saved by a request to write about low anion gap. I know, I know, it sounds like we’re pioneers trekking our way across the mountains when you see that phrase out of context. So, let’s put it into context.

If you looked, you’d find the phrase included in the following blood tests according to the Cleveland Clinic:  

“The anion gap measurement is based on the results of individual electrolyte blood tests, which are commonly included in the following routine bloodwork panels:

• Comprehensive metabolic panel (CMP).
• Basic metabolic panel (BMP).
• Electrolyte panel.”

Let’s do our usual backtracking a bit. My first stop was at Quest Health to find out what the CMP covers:

“This test is a useful tool containing routine screening tests that may help healthcare providers identify signs of certain medical conditions, such as kidney or liver disease, diabetes, hypertension, and other health conditions.

Glucose

Calcium

Total protein

Alanine aminotransferase

Aspartate aminotransferase

Alkaline phosphatase

Bilirubin

Blood urea nitrogen

Creatinine

Albumin

Carbon dioxide

Chloride

Potassium and sodium”

Hmm, no mention of the anion gap here.

Let’s try a different site, MedlinePlus, to see what the BMP tests for:

“A basic metabolic panel (BMP) is a test that measures eight different substances in your blood. It provides important information about your body’s chemical balance and metabolism. Metabolism is the process of how the body uses food and energy. A BMP includes tests for the following:

• Glucose, a type of sugar and your body’s main source of energy.
• Calcium, one of the body’s most important minerals. Calcium is essential for proper functioning of your nerves, muscles, and heart.
• Sodium, potassium, carbon dioxide, and chloride. These are electrolytes, electrically charged minerals that help control the amount of fluids and the balance of acids and bases in your body.
• BUN (blood urea nitrogen) and creatinine, waste products removed from your blood by your kidneys.”

Again, no mention of the anion gap. Surely, the electrolyte panel will evaluate the anion gap. This time I turned to GoodRxHealth:

“An electrolyte panel (also referred to as a ‘metabolic panel’) measures electrolytes and other substances in the blood that play important roles in your overall health. These include:

• Sodium (Na): plays a key role in fluid balance and brain function
• Potassium (K): regulates the heartbeat as well as nerve and muscle activity
• Chloride (Cl): contributes to fluid balance and acid-base levels in the blood
• Carbon dioxide (CO2): indicates how well your body is maintaining the right acid-base balance
• Blood urea nitrogen (BUN) and creatinine (Cr): two waste products that provide a measure of kidney function
• Glucose: also known as ‘blood sugar’”

What! Again, no mention of anion gap. Although, you may have noticed lots of duplication for items measured among the tests. That is sort of helpful. But that’s it! I’m turning to my favorite dictionary of all time, the Merriam-Webster to see if I can find a definition for this elusive phrase. Uh-oh, nothing there. [Oh well, you can’t find everything there just because it’s my favorite.]

The University of Rochester Medical Center was much more to the point:

“Your blood contains sodium, chloride, and bicarbonate. All of these are charged particles. The value for the anion gap tells your healthcare provider something about which other charged particles must be in your blood to make it neutral.

This test gives clues about different types of acidosis, when your blood is too acidic. It also tells your provider about alkalosis, when your blood is not acidic enough. Acidosis and alkalosis can be life-threatening. It’s important to find the causes and treat them as soon as possible.”

Finally. Now we get to the good part. What does a low anion gap mean? WebMD to the rescue:

“If you really do have a low anion gap, it could mean your blood doesn’t have enough of a protein called albumin. Albumin helps important vitamins, hormones, and enzymes move throughout the body. Low albumin can be a sign of:

• Kidney problems. Healthy kidneys block albumin from entering urine. When albumin is leaked into the urine, it may be a sign of kidney disease.
• Heart disease. Heart disease, when treated with diuretics, may lead to alkalosis and low albumin.
• Certain types of cancer . Cancer may cause potassium levels in the blood to drop, causing alkalosis. Chemotherapy cancer treatments may also lead to lower potassium levels.
• Liver disease. The acid—base balance in liver disease is complex. Your doctor may check look for respiratory alkalosis, metabolic acidosis, low albumin, and changes in your potassium levels.”

Wonderful, just wonderful. What are you supposed to do with that? Before you get upset, I ran across this very important warning on MedicalNewsToday:

“A low anion gap reading is very rare, and it often results from a laboratory error. As a result, a doctor who finds a low reading typically orders a second test.”

Add this information from Health Matters and I think we can start to make the connection between the kidneys and the anion gap:

“Our body chemistry consists of a never-ending cascade of molecules reacting with one another to make more complex molecules. A few are commonly familiar: sodium, potassium, and chloride. These can be further classified by their electrical charge. Sodium and potassium are positively charged and are referred to as cations; chloride is negatively charged and is referred to as an anion. An anion gap refers to the measured difference between cations and anions in serum, plasma, or urine….”

It seems low anion gap is very rare and could be due to lab error. If it’s confirmed, your doctor will have to test more to determine what is causing this condition before they can treat it. Notice kidney disease can cause low anion gap as well as some medications can. This was all new to me. I certainly hope it was helpful to the reader requested the information.

I very much appreciate reader comments telling me how interesting they find the blogs. Just remember that I’m not a doctor. I’m learning right along with you.

Until 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!

Mom Had One

Years ago, when I was a young woman in my 20s, my mother had a fibroid in her uterus. Or, at least that was the way she explained it. Come to think of it, she didn’t explain. Rather, she simply announced she’d had it removed. My brother and I, both medically ignorant at the time, had no idea why that was such a big deal.

In the intervening decades, I’ve learned a lot. Most of that medical knowledge has come from researching for the blog. That’s how I learned that a fibroid is a tumor or, as Johns Hopkins puts it:

“Fibroids are growths made of smooth muscle cells and fibrous connective tissue. These growths develop in the uterus and appear alone or in groups. They range in size, from as small as a grain of rice to as big as a melon. In some cases, fibroids can grow into the uterine cavity or outward from the uterus on stalks.”

Notice the word tumor wasn’t used in this definition. It didn’t have to be because a tumor as defined by my all-time favorite dictionary, the Merriam-Webster, is:

“an abnormal benign or malignant new growth of tissue that possesses no physiological function and arises from uncontrolled usually rapid cellular proliferation”

Since they have no function and grow in the same way as cancer does, are they cancerous? Not according to Planned Parenthood, who also offers us the symptoms:

Photo by Sora Shimazaki on Pexels.com

“Uterine fibroids are almost never cancerous, and they don’t increase your risk for getting other types of cancer. But they can cause pelvic pain, heavy period bleeding, bleeding between periods, back pain, and in some cases, infertility or miscarriages. However, many people with fibroids don’t have any symptoms at all.”

My mother was not the type to want to know how the fibroid developed. As most people did 50 years ago, she just wanted it gone. But you might want to know. WebMD explained:

“Experts don’t know exactly why you get fibroids. Hormones and genetics might make you more likely to get them.

Hormones. Estrogen and progesterone are the hormones that make the lining of your uterus thicken every month during your period. They also seem to affect fibroid growth. When hormone production slows down during menopause, fibroids usually shrink.

Genetics. Researchers have found genetic differences between fibroids and normal cells in the uterus.

Other growth factors. Substances in your body that help with tissue upkeep, such as insulin-like growth factor, may play a part in fibroid growth. 

Extracellular matrix (ECM). ECM makes your cells stick together. Fibroids have more ECM than normal cells, which makes them fibrous or ropey. ECM also stores growth factors (substances that spur cell growth) and causes cells to change.”

Let’s get back to Mom wanting it gone. The question here is how? It turns out there are many, many different methods from different types of ablations, surgeries, and medications.

I know you want to know what this has to do with chronic kidney disease. That is actually what I wanted to know, too. According to The National Library of Medicine:

“Uterine fibroids constitute the most common tumor in women of reproductive age …. Significant morbidity secondary to fibroids is a rare event; however acute complications from fibroids may include thromboembolic events, acute torsion of pedunculated fibroids, acute abdominal pain, vaginal bleeding, intra-abdominal bleeding, acute urinary retention, and renal failure. [Gail here: I bolded that.] Uterine fibroids are associated with obstructive renal failure as they can physically compress the ureters, leading to acute urinary retention and postrenal nephropathy.”

I get it, but it took me a while to figure out what this meant. So I looked for a different, more easily understood  explanation… and found it on Fibroids.com:

“Although fibroids are made of muscle tissue found in the uterus, they can outgrow the space within the uterine walls and expand to a size large enough to affect the ureter. The ureter is the tube that connects the bladder and the kidney. When fibroids down [sic] on the ureter, the kidneys swell and develop a condition known as hydronephrosis.

Hydronephrosis is often associated with painful urination, an increased urge to urinate, as well as flank and back pain. In more severe cases, permanent kidney damage may also occur. If you are currently experiencing any of these symptoms or suspect your kidneys may be at risk due to your fibroids, consult with your doctor immediately.” 

Talkingfibroids,com tells us more about hydronephrosis:

“But if hydronephrosis persists for a long time, the nephrons (kidney cells) can die, and the result can be irreversible kidney damage. Even if the obstruction to the ureter is eventually removed, a kidney that has gotten to this point will not regain function.”

Hmmm, there must be a way to prevent this. I searched and searched until I found what I was looking for on India’s GAURI – Guna Associates in Urogynecology & Research for Incontinence:

“The removal of fibroids is crucial for those suffering kidney complications due to fibroids. Despite the prevalence of fibroid surgery like a hysterectomy or myomectomy [removal of only the fibroid], there is a less invasive procedure called uterine fibroid embolization (UFE) that eliminates the scars and trauma associated with surgery.

Fibroid embolization works by reducing the larger fibroid that is pushing on the ureter and causing kidney problems. It provides a quick and effective procedure with no chance of regrowth of the fibroid. By shrinking the fibroid instead of removing it, patients experience a quick and effective procedure.”

While that may sound scary, remember that surgery is another way to deal with fibroids but UFE is less invasive. There is also medication, but please do not take NSAIDS. That stands for non-steroidal anti-inflammatory and, as CKD patients, is not for us. And let’s not forget ablation.

As for diagnosing hydronephrosis, the usual blood and urine tests plus an ultrasound does the trick. The ultrasound will let you see if the kidney is swollen. The urine test will rule out infection or urinary stones. And the blood test will evaluate your kidney function. I wonder whether Mom underwent these tests.

Until next week,

Keep living your life!

Have Some Water

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

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

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

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

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

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

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

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

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

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

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

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

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

I discovered some surprises on WebMD:

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

So Silly!

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

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

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

• Blood vessels inside your kidneys. The filtering units of the kidney are filled with tiny blood vessels. Over time, high sugar levels in the blood can cause these vessels to become narrow and clogged. Without enough blood, the kidneys become damaged and albumin (a type of protein) passes through these filters and ends up in the urine where it should not be.
• Nerves in your body. Diabetes can also cause damage to the nerves in your body. Nerves carry messages between your brain and all other parts of your body, including your bladder. They let your brain know when your bladder is full. But if the nerves of the bladder are damaged, you may not be able to feel when your bladder is full. The pressure from a full bladder can damage your kidneys.
• Urinary tract. If urine stays in your bladder for a long time, you may get a urinary tract infection. This is because of bacteria. Bacteria are tiny organisms like germs that can cause disease. They grow rapidly in urine with a high sugar level. Most often these infections affect the bladder, but they can sometimes spread to the kidneys.”

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

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

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

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

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

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

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

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

And Metformin? Medline Plus informs us:

“Metformin is used alone or with other medications, including insulin, to treat type 2 diabetes (condition in which the body does not use insulin normally and, therefore, cannot control the amount of sugar in the blood). Metformin is in a class of drugs called biguanides. Metformin helps to control the amount of glucose (sugar) in your blood. It decreases the amount of glucose you absorb from your food and the amount of glucose made by your liver. Metformin also increases your body’s response to insulin, a natural substance that controls the amount of glucose in the blood. Metformin is not used to treat type 1 diabetes (condition in which the body does not produce insulin and therefore cannot control the amount of sugar in the blood).”

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

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

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

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

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

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

Until next week,

Keep living your life!

Happy New Year!

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

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

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

“JARDIANCE is a prescription medicine used to:

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

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

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

“MedlinePlus: 

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

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

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

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

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

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

This is why the FDA approval is so important:

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

PFA Doesn’t Mean Professional Fashionista Association

I hope that was good for a laugh. The man I call Constant Reader [Let me know if you’re ready for me to use your name.] has been wondering about PFAs lately. I don’t mean Protection from Abuse, Professional Footballers Association, nor any of the 96 other meanings for the acronym. We need the chemical definition of PFA. Which is, according to the United States Environmental Protection Agency [EPA]:

“PFAS are manufactured chemicals that have been used in industry and consumer products since the 1940s. Because of their widespread use and their persistence in the environment, many PFAS are found in the blood of people and animals all over the world. There are thousands of different PFAS, some of which have been more widely used and studied than others.”

WHAT! The Centers for Disease Control and Prevention [CDC] explains:

“The per-and polyfluoroalkyl substances (PFAS) are a group of chemicals used to make fluoropolymer coatings and products that resist heat, oil, stains, grease, and water. Fluoropolymer coatings can be in a variety of products. These include clothing, furniture, adhesives, food packaging, heat-resistant non-stick cooking surfaces, and the insulation of electrical wire. Many PFAS, including perfluorooctane sulfonic acid (PFOS) and perfluorooctanoic acid (PFOA), are a concern because they:

• do not break down in the environment,
• can move through soils and contaminate drinking water sources,
• build up (bioaccumulate) in fish and wildlife.

PFAS are found in rivers and lakes and in many types of animals on land and in the water.”

My family uses neither Teflon products nor Scotchgard products. I’d forgotten why since we haven’t used them in so long. Thanks for reminding me, EPA and CDC.

Now I want to know what other products contain PFAs. Time, which describes itself as “… a global media brand built on 100 years of unparalleled trust and authority, with an audience of more than 100 million people worldwide across our platforms. Created in 1923, TIME began as the first weekly news magazine: a digest of world events, for busy people to read.” exposed us to a sampling of these products:

“Body care products including shampoo, dental floss, toilet paper, tampons, and pads …

Soft contact lenses … 

Beauty products including nail polish and eye makeup …

Cell phones …

Mattress pads …

Wall paint …

Household dust …

Carpeting …

Food …

Yoga pants and sports bras…

Tap water …

Plumber’s tape … 

Guitar strings …

Candy wrappers …

Bicycle chain lubricant …

Microwave popcorn bags …

Dishwasher and laundry detergent “

Okay, it’s everywhere! So why be concerned? I turned to the National Institute of Environmental Health Sciences to find out:

“Multiple health effects associated with PFAS exposure have been identified and are supported by different scientific studies. Concerns about the public health impact of PFAS have arisen for the following reasons:

• Widespread occurrence. Studies find PFAS in the blood and urine of people, and scientists want to know if they cause health problems.
• Numerous exposures. PFAS are used in hundreds of products globally, with many opportunities for human exposure.
• Growing numbers. PFAS are a group of nearly 15,000 synthetic chemicals, according to a chemicals database (CompTox) maintained by the U.S. Environmental Protection Agency.
• Persistent. PFAS remain in the environment for an unknown amount of time.
• Bioaccumulation. People may encounter different PFAS chemicals in various ways. Over time, people may take in more of the chemicals than they excrete, a process that leads to bioaccumulation in bodies.”

Wow, just wow. Omnipresent. But what, if anything, does this have to do with our kidneys? The PFA Project Lab answers that question:

“As for some of the epidemiologic studies reviewed, several reported a significant association between PFAS exposure with poorer overall kidney health in humans, marked by a significant link between PFAS exposure with a lower estimated glomerular filtration rate and a higher prevalence of chronic kidney disease. This relationship was also seen in children….”

Back to the EPA for a minute to see how people’s health can be affected by PFAs:

“Current peer-reviewed scientific studies have shown that exposure to certain levels of PFAS may lead to:

• Reproductive effects such as decreased fertility or increased high blood pressure in pregnant women.
• Developmental effects or delays in children, including low birth weight, accelerated puberty, bone variations, or behavioral changes.
• Increased risk of some cancers, including prostate, kidney [Gail here, I bolded that.], and testicular cancers.
• Reduced ability of the body’s immune system to fight infections, including reduced vaccine response.
• Interference with the body’s natural hormones.
• Increased cholesterol levels and/or risk of obesity.”

Furthermore, Frontiers, self-described as “… the 3rd most-cited and 6th largest research publisher and open science platform,” explains:

“Based on the biodegradability and bioaccumulation of perfluorooctanoic acid in the human body, there are increasing concerns about the adverse effects of perfluorooctanoic acid exposure on kidneys. Research shows that kidney is the main accumulation organ of Perfluorooctanoic acid, and Perfluorooctanoic acid can cause nephrotoxicity and produce adverse effects on kidney function, but the exact mechanism is still unknown.”

While this is probably alarming to you, I must tell you that every piece of research I looked at mentioned that more studies were necessary. What surprised me was that these ‘forever’ particles live up to their name: they do not dissipate. However, there has been recent legislation – both state and national – on PFAs in drinking water. Ladies and gentlemen, you have to start somewhere.

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!

Now There’s Long Covid

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

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

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

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

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

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

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

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

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

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

Coronavirus might target kidney cells

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

Too little oxygen can cause kidneys to malfunction

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

Cytokine storms can destroy kidney tissue

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

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

COVID-19 causes blood clots that might clog the kidneys

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

We need a definition of Long Covid before we continue.

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

Thank you to Yale Medicine for the definition .

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

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

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

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

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

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

Until next week,

Keep living your life!

Dream a Little Dream with Me

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

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

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

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

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

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

And protein? Thank you to MedlinePlus for this definition:

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

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

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

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

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

Photo by Min An on Pexels.com

• “Family history of IgA nephropathy.
• Family history of IgA vasculitis, (Henoch-Schönlein purpura).
• Being a young adult male (teens to late 30s).
• Asian or European ethnicity.”

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

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

When IgA nephropathy causes symptoms, they might include:

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

NephCure explains how this disease is diagnosed:

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

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

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

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

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

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

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

Until next week,

Keep living your life!

I Hardly Expected this Connection.

Just about three years ago I wrote about how chronic kidney disease could cause a sinus infection, also known as sinusitis. The English teacher part of me knew what sinusitis meant since ‘itis’ is a suffix [letters added at the end of a word to change its meaning]. It means inflammation. I’ve got the entire etymology of the word, but that’s not what you came here for today.

Now poor Bear has yet another sinus infection. He’s had quite a few in the last several years. He also has developed CKD in the last few years. That got me to thinking. We know CKD can cause sinus infections but could all these sinus infections have caused his CKD. Let’s take a look.

First off, what is a sinus infection? We don’t even need a medical dictionary for that definition. Let’s go to my all-time favorite dictionary, the Merriam-Webster:

“inflammation of a sinus of the skull”

 Of course, now we need the definition of sinus:

“a narrow elongated tract extending from a focus of suppuration [Gail here: that means forming pus] and serving for the discharge of pus”

Now what? Combining the information from all the sites I visited, the consensus seems to be that it’s not the sinusitis itself that can cause CKD, but rather that the treatment of sinusitis may be the culprit. It also seems that this is rare and only applies to long term, untreated cases of sinusitis. Yet, today’s blog may prove interesting.

What do I mean? Well, a severe case of sinusitis will require strong antibiotics. Are you sure your doctor is using antibiotics that are safe for your kidneys and in the correct strength. I clearly remember going to the ER with a bladder infection years ago. They insisted I take sulfur medication until my nephrologist called them screaming that I could not do that. It’s probably the same for other severe infections. I turned to AARP for more information, knowing full well that this site is for retired people:

“If you have kidney disease, understand what your kidney function is before you take an antibiotic.  That will help you and your doctor determine the dosage.  Owen [Derek Owen, a clinical pharmacist with the kidney team at the University of Chicago Department of Medicine] says that some medications used to treat viruses can cause kidney injury.  It’s important, he says, to stay hydrated when taking medications like acyclovir or valacyclovir.  When dehydrated, the medication can clump together and create crystals that prevent you from urinating properly, he says.

Some people, Owen says, may have allergic reactions to antibiotics in their kidneys. The reaction is sometimes just in the kidneys and at other times can cause a rash or a fever. Such a reaction in the kidneys is caused by inflammation and irritation. Owen stresses the importance of letting your health care team know if you have any changes in how much you urinate after any course of antibiotics.

If not taken as directed or in doses that are too high, antibiotics can be dangerous and more likely to cause problems. People with decreased kidney function should be taking smaller doses than others.” 

Suppose your sinusitis becomes severe and the infection goes beyond the sinuses. Your other organs may become infected, too. Your kidneys are organs. Then again, if the infection is carried via your blood, your kidneys are in danger since your kidneys filter your blood… and in this case, the infection that flows in your blood. Remember, your kidneys are already damaged, so they are not doing the best job possible to filter your blood before it runs through your body again. The National Kidney Foundation clarifies the worst-case scenario, that of the infection becoming sepsis:

“Sepsis is a life-threatening emergency. It is a severe response to an infection or injury. This can include blood clots, leaky blood vessels, and drops in blood pressure. Sepsis can stop oxygen and nutrients from reaching your kidneys…

• Sepsis can overwhelm the body. This can cause vital organs to shut down. This usually starts with the kidneys.
• Blood pressure can drop dangerously low. This can cause less oxygen and nutrients to reach your kidneys.
• Blood clots can form within the body. This can also slow down the flow of oxygen to the kidney.”

Let’s say the infection does not go beyond your sinuses. Your kidneys may still be damaged. Your immune system deals with infections. If the sinusitis is that severe, your immune system may go into overdrive. Uh-oh, you may end up with inflammation throughout the rest of your body… including your kidneys. Tampa General Hospital does a job of explaining than I could do:

“Nephritis causes one or both kidneys to become inflamed and leak protein into the urine. 

Nephritis is an inflammation of the kidneys. These important organs clean the blood by filtering out excess fluid and toxins, then eliminate those waste products from the body in the form of urine. Healthy kidneys do not remove proteins from the blood, which help the body absorb water. However, inflamed kidneys can leak protein into the urine, which can impair the body’s ability to absorb water and lead to tissue swelling.”

Nephritis is most often caused by an autoimmune disease which is discussed below, but it may be caused by infections.

Something else to consider is that your chronic sinusitis may be caused by an underlying condition. Could it be one that may affect your kidneys… like an autoimmune disease? The Mayo Clinic offers a good example of how one kidney disease may be caused by autoimmunity:

“Lupus nephritis is a problem that occurs often in people who have systemic lupus erythematosus, also called lupus.

Lupus is a disease in which the body’s immune system attacks its own cells and organs, called autoimmune disease. Lupus causes the immune system to make proteins called autoantibodies. These proteins attack tissues and organs in the body, including the kidneys.

Lupus nephritis occurs when lupus autoantibodies affect parts of the kidneys that filter out waste. This causes swelling and irritation of the kidneys, called inflammation. It might lead to blood in the urine, protein in the urine, high blood pressure, kidneys that don’t work well or even kidney failure.”

Keep in mind that, while possible, sinusitis is not often a cause of CKD. Sorry, Bear.

Until next week,

Keep living your life!

At the Heart of The Matter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Ectopic

Ectopic: “occurring in an abnormal position or in an unusual manner or form” Thank you to my favorite dictionary of all time, The Merriam-Webster, for that definition. You may have heard of an ectopic pregnancy. Healthline explained what that is:

“From fertilization to delivery, pregnancy requires a number of steps in a woman’s body. One of these steps is when a fertilized egg travels to the uterus to attach itself. In the case of an ectopic pregnancy, the fertilized egg doesn’t attach to the uterus. Instead, it may attach to the fallopian tube, abdominal cavity, or cervix.

While a pregnancy test may reveal a woman is pregnant, a fertilized egg can’t properly grow anywhere other than the uterus. According to the American Academy of Family Physicians (AAFP), ectopic pregnancies occur in about 1 out of every 50 pregnancies (20 out of 1,000).”

While that’s interesting, it’s not what I’ll be writing about today. Rather, I’ll be writing about an ectopic kidney. From the above, we can already figure out that this means the kidneys were in the wrong place. The National Institutes of Health can explain better than I can:

“What is an ectopic kidney? An ectopic kidney is a kidney located below, above, or on the opposite side of the kidney’s normal position in the urinary tract. The two kidneys are usually located near the middle of your back, just below your rib cage, on either side of your spine.”

This didn’t sound so good to me. What causes an ectopic kidney, I wondered. According to National Institute of Diabetes and Digestive and Kidney Diseases:

“During fetal development, a baby’s kidneys first appear as buds inside the pelvis, near the bladder. As the fetal kidneys develop, they climb gradually toward their normal position near the rib cage in the back. Sometimes, one of the kidneys fails to make the climb. It may stop after making part of the climb. Or it may remain in the pelvis. Rarely does a child have two ectopic kidneys. Some kidneys climb toward the rib cage, but one may cross over so that both kidneys are on the same side of the body. When a crossover occurs, the two kidneys may grow together and become fused.”

Having two little grandchildren, I found this fascinating. How are such things not common knowledge? I realize that’s an unrealistic attitude.

So, here we have a poor little baby and unsuspecting parents. How do they become aware of the condition? The Urology Care Foundation listed the symptoms to keep watch for:

“The most common symptoms linked to the ectopic kidney are:

• Urinary Tract Infections (UTI)
• Belly pain
• A lump in the abdomen

A kidney in an abnormal spot may still work properly. But because of the change, it may have problems draining. Up to 1 out of 2 ectopic kidneys are at least partly blocked. Over time, these blockages can lead to serious problems, such as:

• Urinary Tract Infections (UTIs)
• Kidney Stones
• Kidney Failure

Ectopic kidneys are also linked to vesicoureteral reflux (VUR). VUR is a condition where urine backs up from the bladder through the ureters into the kidneys. Over time, VUR can lead to infections. Infections can cause damage to the kidney that can’t be fixed. The non-ectopic kidney can also have problems like blockages or VUR.”

Uh-oh, I know of a little baby with VUR. What’s to be done if a baby does have an ectopic kidney? Wait, I think you first need to know that there are two types of ectopic kidneys. Associates in Nephrology had a nice, simple description of the two for us. [Remember that renal and kidney are the same.]:

“Renal ectopia is divided into two types. A simple renal ectopia is marked by a kidney sitting on each side of the spine, but above or below its normal placement. The other type is a crossed renal ectopia, which occurs when both kidneys develop on the same side of the spine. Crossed renal ectopic kidneys sometimes fuse together.

The condition doesn’t cause any health problems or symptoms if one or both kidneys function properly. In fact, most people don’t know they have an ectopic kidney until it’s detected by medical tests for another disorder.

Yet some people experience pronounced symptoms stemming from renal ectopia that could produce a urinary tract infection; pain and/or a lump in the abdomen; bloody urine; frequent urination; or a burning sensation when you urinate.”

Don’t lose hope! There are remedies for this condition [if any is required]. The National Kidney Foundation was helpful here:

“An ectopic kidney only needs treatment if it causes problems with your urine flow. If this is the case, your healthcare provider will need to evaluate your kidney.  If the problem is caught soon enough, your healthcare provider can treat it. This includes treating the infection, removing the blockage, or fixing the urine flow before kidney damage happens. Sometimes surgery may be needed. This can correct the position of the kidney. That will lead to better drainage of urine.

If the kidney is severely damaged and not working properly, your healthcare provider may suggest removing it.  This will only be done if your other kidney is working well. “

Urine flow? What does that have to do with anything? MedlinePlus explained the usual urine flow:

“Urine flows from each kidney through tubes called ureters and into the bladder. When the bladder is full, it squeezes and sends the urine out through the urethra. No urine should flow back into the ureter when the bladder is squeezing. Each ureter has a one-way valve where it enters the bladder that prevents urine from flowing back up the ureter.

But in some people, urine flows back up to the kidney. This is called vesicoureteral reflux.

Over time, the kidneys may be damaged or scarred by this reflux.…”

You may notice that this blog was meant to be published last Monday. Between health and computer problems, obviously, it wasn’t. Apologies.

The things you learn! I started this blog 13 years ago and never once was I in the position of not having a topic to write about. Thank you to those who suggested topics and to all who read the blog.

Until next week,

Keep living your life!

I Checked This on a Whim

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

That’s Weird

That was my first thought when a reader asked me to write about nail fungus and chronic kidney disease. It was something I’d not only never thought about but had never occurred to me might be somehow connected to CKD.

Photo by Monstera Production on Pexels.com

Surprise! It is. Let’s start exploring it in our usual manner – with a definition. This is from the Mayo Clinic:

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

This did not sound good at all. How, in heaven’s name, did this happen? WebMD had that topic thoroughly covered:

“You get an infection when a crack in your nail or the skin around it allows fungus to get inside and grow.

Since fungus thrives in dark, warm places, your toenails are more likely to be affected than your fingernails. Your toes also have less blood flow than your fingers, which makes it harder for your body to pick up on and prevent an infection.

You’re more likely to get a fungal nail infection if you:

• Are a man
• Are older, since nails become more brittle and likely to crack as you age 
• Have a weak immune system or ongoing health problems like diabetes
• Wear shoes that make your feet hot and sweaty
• Walk barefoot through gym showers, swimming pools, and locker rooms –places where fungus spreads easily 
• Live with someone who has a fungal infection
• Have athlete’s foot, as the fungus that causes it can spread to your nails 
• Recently had an injury or surgery on your nail, or had a previous infection
• Wear plastic gloves or keep your hands wet for long periods” 

As an older diabetic, I was getting a little bit more nervous the more I researched. I felt I needed to know the symptoms of nail fungus just as much as my reader did. So, I turned to Health.com only to find out there are different types of nail fungus with different symptoms:

“Any toenail fungus causes a range of symptoms, but some of the most common are: …

• Nail thickening
• Yellowing, browning, or discoloration
• Nail crumbling
• Abnormal or frequent breakage
• Unusually shaped nails
• Separation of the nail from the nail bed
• Pain
• Odor or bad smell

Different types of infections often cause various symptoms. For example, many mold infections aren’t painful, but yeast infections can be.

And you may notice a dark debris build-up under the nail with distal subungual toenail fungus. On the other hand, you’re more likely to see white spots or patches on the nail’s surface with white superficial toenail fungus….”

I also learned this was not something you could treat by yourself. According to the CDC:

“Fungal nail infections can be difficult to cure, and treatment is most successful when started early. Fungal nail infections typically don’t go away on their own, and the best treatment is usually prescription antifungal pills taken by mouth. In severe cases, a healthcare professional might remove the nail completely. It can take several months to a year for the infection to go away.

Fungal nail infections can be closely associated with fungal skin infections. If a fungal infection is not treated, it can spread from one place to the other. Patients should discuss all skin concerns with their healthcare provider to ensure that all fungal infections are properly treated.

Even after treatment, fungal nail infections can come back. This is more common in people who have conditions like diabetes that make them more likely to get a fungal nail infection. If you suspect an infection has returned, contact your healthcare provider.”

I was way more than halfway through writing this blog when I realized I hadn’t touched upon CKD’s role in nail fungus. It was time to rectify that. Where better to find this information than the National Nail Fungus Organization:

“Abnormal changes in nails are expected on people who are suffering from chronic kidney disease as their normal diets have also changed. Unless the patients are able to manage or slow down the progress of their kidney disease, their nails are not likely to improve.

Unfortunately, having CKD also makes them susceptible to acquiring nail fungus infection, and the risk increases for older persons and diabetic patients. For people with chronic kidney disease, they have limited options of nail fungus treatment. As their kidneys cannot flush out the toxins and clear the medications off their body, they must obtain their doctors’ approval and prescription for oral fungicidal medications.

They have the option of using topical treatments, though. And depending on the products’ ingredients, topical medications can just be as effective as oral ones without the side effects.”

While this was not exactly what I had been looking for, I deemed it important information for us to know. I also discovered that CKD does have other effects on your nails. I wanted to know why. Reset Kidney Health explained:

“The kidneys act as a filtration system, ridding our body of waste and delivering essential nutrients into our bloodstream. Unfortunately, as kidney disease progresses and function decreases, toxic substances will build up in our bloodstream and cause our nails to change color, form, and texture. High levels of nitrogen in the bloodstream often cause these physical changes.

Sometimes, chronic kidney disease sufferers will be placed on diets meant to slow the progression of the disease by limiting specific nutrient quantities to prevent a system overload on the already taxed kidneys. Unfortunately, that can result in nutrient deficiencies affecting keratin production, a protein responsible for nail strength.”

Makes sense to me. That could account for concave nails, yellow coloring, white streaking, Beau’s lines, detached, or brittle nails. I must admit I thoroughly enjoy learning about this particular side effect of CKD. I just don’t want to experience it, and I certainly hope you don’t either.

Until next week,

Keep living your life!

To Fast or Not to Fast

There’s been quite a buzz about intermittent fasting [IF] in the news lately. Even those with chronic kidney disease are interested. I am, but it wasn’t until a reader asked about it that I decided to write about it. Elizabeth, this one’s for you… and me.

I wanted to know exactly what it was instead of working on what I thought it was. I turned to the trusted Cleveland Clinic for a definition [and a bit more]:

“Intermittent fasting is when you alternate between periods of eating and fasting. This type of eating is often described as ‘patterns’ or ‘cycles’ of fasting.

Intermittent fasting isn’t about starving yourself — it’s about cutting way back on calories for short time periods. The belief is that your body becomes satisfied with smaller portions while also reducing cravings for unhealthy snack foods. That is, as long as you maintain a healthy diet while trying it all out. “ 

I’d heard different people speak about different ways to do this. Healthline explained them:

• “Time-restricted eating. Involves fasting every day for 12 hours or longer and eating in the remaining hours. A popular example is the 16/8 method. It features a daily 16-hour fast and an 8-hour eating window wherein you can fit in 2, 3, or more meals.
• The 5:2 diet. The 5:2 diet involves eating as you normally do 5 days of the week and restricting your calorie intake to 500–600 on the remaining 2 days.
• Eat Stop Eat. Eat Stop Eat involves a 24-hour fast once or twice per week.
• Alternate-day fasting. With alternate-day fasting, the goal is to fast every other day.
• The Warrior Diet. The Warrior Diet was among the first popular diets to include a form of intermittent fasting. It involves eating small amounts of raw fruits and vegetables during the day and eating one large meal at night.”

 I wondered if losing weight was the only reason people wanted to fast in one way or another. According to the Mayo Clinic:

“Losing weight and being physically active help lower your risk of obesity-related diseases, such as diabetes, sleep apnea and some types of cancer. For these diseases, intermittent fasting seems to be about as beneficial as any other type of diet that reduces overall calories.

Some research suggests that intermittent fasting may be more beneficial than other diets for reducing inflammation and improving conditions associated with inflammation, such as:

• Alzheimer’s disease
• Arthritis
• Asthma
• Multiple sclerosis
• Stroke”

This was starting to sound almost too good, so I started looking for side effects. This is what Harvard Health Publishing had to offer:

Photo by Liza Summer on Pexels.com

“#1. Intermittent fasting may make you feel sick.

Depending on the length of the fasting period, people may experience headaches, lethargy, crankiness, and constipation. To decrease some of these unwanted side effects, you may want to switch from adf fasting to periodic fasting or a time restricted eating plan that allows you to eat everyday within a certain time period.

#2. It may cause you to overeat.

There’s a strong biological push to overeat following fasting periods because your appetite hormones and hunger center in your brain go into overdrive when you are deprived of food.

It’s human nature for people to want to reward themselves after doing very hard work, such as exercise or fasting for a long period of time, so there is a danger of indulging in unhealthy dietary habits on non-fasting days. 

Two common effects of calorie-restricted diets—a slowed metabolism and increased appetite—are just as likely when people practice intermittent fasting as when they cut calories every day. And in studies of time-restricted eating, evidence is accumulating that eating that misaligns with a per­son’s circadian rhythm (your body’s natural daily pattern) may led to metabolic trouble.

#3. Intermittent fasting may cause older adults to lose too much weight.

While intermittent fasting shows promise, there is even less evidence about the benefits or how fasting might affect older adults. Human studies have looked mostly at small groups of young or middle-aged adults, for only short periods of time.

But we do know intermittent fasting could be risky in some cases. If you’re already marginal as far as body weight goes, I’d be concerned that you’d lose too much weight, which can affect your bones, overall immune system, and energy level.

#4. It may be dangerous if you’re taking certain medications.

If you want to give intermittent fasting a try, make sure to discuss it with your doctor first. Skipping meals and severely limiting calories can be dangerous for people with certain conditions, such as diabetes. Some people who take medications for blood pressure or heart disease also may be more prone to imbalances of sodium, potassium, and other minerals during longer-than-normal periods of fasting.

People who need to take their medications with food — to avoid nausea or stomach irritation — may not do well with fasting.”

Time to get specific. Is IF off limits for those with CKD? I found information about diabetics at Harvard’s T. H. Chan’s School of Public Health:

“Individuals with the following conditions should abstain from intermittent fasting:

• Diabetes
• Eating disorders that involve unhealthy self-restriction (anorexia or bulimia nervosa)
• Use of medications that require food intake
• Active growth stage, such as in adolescents
• Pregnancy, breastfeeding”

How many of us with CKD have diabetes, the foremost cause of CKD? But what about CKD by itself? As Emily Campbell, RD CDE MScFN, puts it:

“… there has not been enough research in those with CKD, and current studies have inconclusive results for if intermittent fasting can improve eGFR. It is best to speak with your healthcare team or renal dietitian for personalized recommendations to improve your kidney function.”

I did come across some research, but it was either on mice – which we are not – or fasting during the holiday of Ramadan, which not all of us observe. I’ll stick with my nephrologist’s advice on fasting.

I’m pretty sure what goes for intermittent fasting is also true for total fasting.

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!

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!

Here Comes That Old Refrain

If this sounds familiar, it’s only because I’ve written about it several times in the last 13 years. I’ll bet you’ve already figured out today’s topic is fatigue. Let’s do my usual start-at-the-beginning routine. My very favorite dictionary since college [I can’t believe that was almost 50 years ago.], Merriam- Webster, offers a multitude of definitions.

We can skip the 1^st and 3^rd definitions as the first deals with the military and the third with materials, rather than humans. I’m referring to the noun [person, place, thing, or idea] definition rather than those for the verb or adjective. Furthermore, of the three definitions in the noun form, we’ll use only the second because the first deals with weariness and the third with apathy.

I know, I know, you want to know the definition already. Here it is:

“the temporary loss of power to respond that is induced in a sensory receptor (see RECEPTOR sense a)     or motor (see MOTOR entry 2 sense 1) end organ by continued stimulation.”

You know you’re right if you’re thinking I’ve never approached fatigue from this angle before. It’s new to me, too, so we’ll both be learning today. Ready for more definitions? This one is for sensory receptor:

“a cell or group of cells that receives stimuli”

And this is for motor end organ:

“a

: causing or imparting motion

b

: of, relating to, or being a motor neuron or a nerve containing motor neurons

motor fiber

c

: of, relating to, concerned with, or involving muscular movement

Let’s ignore ‘a’ for the time being and see what we can do with ‘b’ and ‘c.’

Whoa there, Gail! You never explained the connection between fatigue and chronic kidney disease. Better do that before we start exploring how it affects your CKD.

“Extreme, on-going tiredness, together with a lack of energy, is often called fatigue. If your kidneys are not working well, toxins (waste products) build up in your blood and this can make you feel tired and weak. You may feel more tired as your CKD progresses.

• Kidney damage can also lead to a shortage of red blood cells, causing you to be anaemic. If anaemia is not treated, it can result in you feeling more tired than usual and lacking in energy.
• If you are receiving haemodialysis you may find that you feel very tired after the treatment. People describe this as feeling ‘washed out’ or ‘drained’. This can last for a few hours after each session or much longer. This feeling may improve over time as your body gets used to the dialysis.
• Poor sleep quality can also cause fatigue, particularly if you have problems falling or staying asleep or if you sleep during the day.
• Itching is common in people with kidney disease and can also cause disturbed sleep.
• A small number of people suffer from a condition called sleep apnoea, when your breathing stops and starts while you sleep.
• Some kidney patients complain of restless legs syndrome. This is a feeling that your legs need to keep moving. It often occurs when lying in bed at night and can prevent people from sleeping well.
• Feeling depressed or anxious can also cause sleeplessness and fatigue. For example, you may be having so many anxious or worrying thoughts that they keep you awake at night so you are tired during the day.”

Ready to explore the specific science behind fatigue now? I’m willing to give it a try. I turned to WebMD:

Kidney Care UK offers a comprehensive explanation:

“The messages traveling in your nerves are sent through billions of nerve cells called neurons. [Gail here: this includes motor neurons.] The spaces between these cells are called synapses. The cells are linked to one another through chemicals called neurotransmitters that move across the synapses to the next neuron. Dopamine and serotonin are types of neurotransmitters.

This process continues until the message gets to the right place. Some messages move faster than 200 miles per hour.

This is also how messages get from your body back to your brain and spinal cord.”

Hmm, it seems to me that everything we have so far is saying that when neurons between the brain and the kidneys go awry, we can end up with fatigue. Of course, that’s not the only way to become fatigued, but it does explain how your kidneys not working as well as they could allows toxins to build up in your bloodstream. Compromised blood circulates through your brain and you find yourself not just tired but fatigued.

Photo by Andrea Piacquadio on Pexels.com

So, what to do about the fatigue? It’s hard to live with. One paper in the Clinical Journal of the American Nephrology Society [CJASN] offers the following:

“The approach to a patient with fatigue should begin with an assessment of factors where one might be able to intervene. These include recognition and treatment of anemia, sleep disorders, and depression. Targeting higher hemoglobin levels with ESAs [Gail again -Erythropoietin stimulating agents] has associated risks that preclude their indiscriminate use other than on an individualized basis. Interventions targeting depression have not yet proven convincingly beneficial for improving fatigue, but studies are ongoing. Sodium bicarbonate supplementation to treat metabolic acidosis may help improve fatigue and functional status. Physical activity is worth recommending in light of the additional benefits of exercise. “

One note on the above. This is the black box warning on ESA box according to Pfizer:

“WARNING: ESAs INCREASE THE RISK OF DEATH, MYOCARDIAL INFARCTION, STROKE, VENOUS THROMBOEMBOLISM, THROMBOSIS OF VASCULAR ACCESS AND TUMOR PROGRESSION OR RECURRENCE.

Chronic Kidney Disease:

• In controlled trials, patients experienced greater risks for death, serious adverse cardiovascular reactions, and stroke when administered erythropoiesis-stimulating agents (ESAs) to target a hemoglobin level of greater than 11 g/dL ….
• No trial has identified a hemoglobin target level, ESA dose, or dosing strategy that does not increase these risks ….
• Use the lowest RETACRIT dose sufficient to reduce the need for red blood cell (RBC) transfusions ….”

There are also specific warnings for cancer, and perisurgery [pre, during, and post operation].

Not being a doctor and having no medical training except what I’ve taught myself, this was one of the more difficult blogs to write. Here’s hoping I got it right but, as always, check with your nephrologist if you need help with any of this.

Until next week,

Keep living your life!

It’s Not What I Thought It Was

Welcome to National Kidney Month. It’s every March and we’re into March already. [Can you believe it?] Naturally, there’s quite a bit of discussion among kidney disease advocates this month, even more so than usual … and that’s quite a lot.  

In the midst of one such discussion, the word Dialyspa was mentioned. You can imagine what I thought it was. I was wrong, but there are aspects of it that do seem spa like. Before I get into it, you have to remember that I am not endorsing it, but simply bringing something new to your attention. Of course, you’d have to travel to Texas, where they’re located, if you’re interested. 

Okay, so if Dialyspa is not a normal spa where you can also do your dialysis, what is it? I’ll let their website explain to you. I do have to admit I looked there for the steam room, mud room, and sauna that wasn’t there. 

“When you are with us, our goal is for you to have the most comfortable experience possible. We know that dialysis patients spend an average of 12 hours per week receiving treatments, so we’ve spared no expense to make this time as relaxing and productive as possible – no detail or amenity has been overlooked. Some of the comforts you can expect to see at our unique centers are: 

• Welcoming, friendly staff 
• Beautiful décor and a soothing atmosphere 
• Private stations for each patient  
• Ambient lighting instead of fluorescent lighting 
• Oversized ‘lay-flat’ recliners with different levels of heat and massage 
• Personal entertainment systems run by an iPad that controls your flat panel television and can simultaneously be used to surf the web 
• Extra outlets for your other devices 
• Free Wifi throughout the facility 
• Complimentary coffee bar and the best crushed ice in town!” 

This reminded me of the cancer center where I had my chemotherapy, not entirely but somewhat. I always felt welcomed, was brought coffee at my request, offered blankets, and showed the extra by the friendly nurses who took their time with each of the patients. Very much unlike the crowded, noisy dialysis rooms with unfriendly, rushed staff my readers complained of. Not all of them, of course. That was so unlike the chemotherapy centers. 

But then I wondered if there were more than the physical – but appreciated – comforts mentioned above offered by Dialyspa. That’s when I realized how much easier the following would make dialysis for the patients. 

“Dialyspa sets a new standard in excellence: state-of-the-art treatment facilities, attentive technicians, and on-site experts are just the beginning of our unparalleled commitment to patient satisfaction. The foundation of Dialyspa’s superior service quality is our commitment to go above and beyond the smallest standards of dialysis health care. Below are just a few of the ways we’ve set the new standard in patient care: 

• Higher patient-to-technician ratio than the state requires 
• Higher patient-to-nurse ratio than the state requires 
• Case load for entire clinical staff is better than state requirements 
• Cutting-edge on-site water filtration system 
• Top-of-the-line dialysis machines 
• Flexible scheduling 
• Isolation room for at-risk patients 
• Backup generator for operation during emergencies and disasters 
• Spare machines and supplies on premises in case of emergencies and disasters 
• In-home dialysis care and training 
• On-site grief and stress management counseling 
• Insurance paperwork and financial assistance program guidance” 

Being who I am [one of those annoying people who always asks why or how], I wanted to know where this all started and why. Former dialysis patient, Neill Simon, and his friend, Dr. Jeffrey Kalina, did a fine job of explaining: 

“What has really helped us hone our patient-centric approach is the incredible insight given to us by one of our co-founders, Neill Simon, who was himself a dialysis patient going through treatments. He was able to provide us with first-hand experience and understanding into the best way to run our clinic programs. 

Like many dialysis patients, Neill found it difficult to adjust to the sudden changes of his new lifestyle. Having had many unpleasant experiences dialyzing in high-volume clinics with impersonal and even indifferent treatment by overloaded staff, Neill knew how important it was to put the patient experience first. It was important to him that patients be treated with respect and compassion, and to have accommodations that helped to improve this life-changing ordeal. 

Neill personally saw to it that Dialyspa would offer every patient all the comforts he himself would like to experience during dialysis—from heated chairs to state-of-the-art entertainment systems, even down to his favorite ice. Neill’s goal was to make sure that all Dialyspa patients know that they are genuinely cared for and supported.  

Our other co-founder, Dr. Jeffery Kalina, was a longtime friend of Neill, who shared in his vision of a patient-centric dialysis facility – but Dr. Kalina also brought something special to this equation. His experience as the ‘Chairman of the Disaster Response Team’ in the Texas Medical Center during Hurricane Katrina, and, as the ‘Coordinator of Emergency Dialysis Services’ with the Texas State End Stage Renal Network during Hurricane Ike, made him witness firsthand the effects of insufficient emergency dialysis services during hurricanes and natural disasters. 

Dr. Kalina became convinced that all dialysis clinics should have a backup generator to protect against power loss during disasters and emergencies. He expanded Dialyspa’s mission to ensure every dialysis patient would have access to around-the-clock care in times of crisis. Thus, Dialyspa has emergency provisions we feel are unmatched by any other dialysis center in Houston. And for this reason, we were the only clinic open the entire duration of Hurricane Harvey. 

Together, our founders created an ideal dialysis facility – designed from a patient’s perspective with a doctor’s medical insight. When you are with us, our main objective is for you to have the most comfortable and relaxing experience possible – we want to be proactive and responsive to your needs when you are under our care. We want to change your dialysis experience.” 

I am not on dialysis. I don’t know if I ever will be. But if I were, this is what I would want in a dialysis center. What I can’t understand is why we can’t have it everywhere, even though it would take work… and money… and dedication. 

Until next week, 

Keep living your life! 

S**t Happens

As careful as we’ve all been, the dreaded stomach virus (not Covid) has struck at my daughter’s house. Maybe the children brought it home from day care. Maybe one of us was next to an unmasked person who had it. Who knows? You know what concerns me… and you. Our kidneys in relation to this. 

Of course, stomach virus has a medical name: gastroenteritis. According to MedlinePlus, 

“Gastroenteritis is an inflammation of the lining of the stomach and intestines. The main symptoms include vomiting and diarrhea. It is usually not serious in healthy people, but it can sometimes lead to dehydration or cause severe symptoms.” 

How the heck does that happen? Mount Sinai tells us, 

“Gastroenteritis can affect one person or a group of people who all ate the same food or drank the same water. The germs may get into your system in many ways: 

Directly from food or water 

By way of objects such as plates and eating utensils 

Passed from person to person by way of close contact” 

Hmm, the only food I shared at their house was the coffee my son-in-law made for me. But that can’t be it because he had some and didn’t get sick. I’d even drunk only from my own water bottle in since I think it’s a bad idea to leave it in a hot car. 

I turned to WebMD for the symptoms, just in case I’d missed any. 

“With gastroenteritis, the main symptoms you probably have are watery diarrhea and vomiting. You might also have stomach pain, cramping, fever, nausea, and a headache. 

Because of diarrhea and vomiting, you also can become dehydrated. Watch for signs of dehydration, such as dry skin and a dry mouth, feeling lightheaded, and being really thirsty.” 

After a despicable 24 hours in the bathroom and another 24 in bed, I still feel drained and light headed.

Healthline had quite a bit of information about how to deal with gastroenteritis, 

“Most of the time you can treat your stomach bug symptoms at home. The best remedy is just to allow yourself time to rest and recover from the virus. However, if symptoms persist for more than a few days, you may need to seek medical attention. 

Drink plenty of fluids. Adults can drink sports drinks with electrolytes, and children can also drink fluid replacement solutions such as Pedialyte. These drinks, coupled with water, will help restore the body’s hydration balance. For best results, drink a few sips every half hour to an hour. 

Limit sugary drinks or sodas, as these liquids don’t replace lost electrolytes. Coconut water is a great natural source of electrolytes as well, plus it’s much lower on sugar. 

Once you feel ready to eat again, give your stomach a break by slowly introducing bland foods into your diet. These may include: 

cereals 

whole grains 

breads 

potatoes 

bananas 

vegetables 

fresh apples 

plain yogurt 

bananas [sic]

Avoid dairy, alcohol, caffeine, spicy foods, and fried foods that might upset your stomach.” 

As I munch my dry Cheerios, I want to get into what I consider the important part of today’s blog: how does the stomach flu affect our kidneys? 

Thank you to Everyday Health for the following information: 

“Dehydration is the most common complication of gastroenteritis…. It happens because your body loses fluids and electrolytes that aren’t replaced when you vomit or have diarrhea. 

Being dehydrated is especially dangerous for small children, the elderly, and people with weakened immune systems. 

If you have severe dehydration, you might have to go to the hospital to have fluids delivered intravenously (through an IV). 

Dehydration can lead to more serious problems, such as: 

Heat Injury If you don’t have enough fluids while you’re physically active, you could have a life-threatening heatstroke. 

Urinary and Kidney Issues A long or repeated episode of dehydration can trigger kidney stones, urinary tract infections (UTIs), or kidney failure. [Gail here: my bolding] 

Seizures When your electrolytes are out of whack, you could develop seizures. 

Hypovolemic Shock This life-threatening condition happens when low blood volume causes a drop in blood pressure and the amount of oxygen in your body…. 

You may be able to prevent dehydration by drinking extra fluids, and in some cases, taking an oral rehydration solution….” 

Let’s not panic. Keep yourself hydrated should you suffer from stomach virus. I found that difficult and would have pushed the hydration more had I researched before becoming ill. I wish I had. 

Oh, I am – make that was – diligently working on the index for SlowItDownCKD 2022 before I became ill. I intend to give myself one more day of rest before returning to that. Just to be safe, let’s say the print version of the book will be out next week on Amazon.com. In the meantime, the digital version is available on Amazon. 

Thank you for listening to my tale of woe. 

Until next week, 

Keep living your life!  

Kenalog & Chronic Kidney Disease

If Bear and I had no medical issues, I think I’d run out of topics to write about… or maybe not. It’s my turn this week. It seems I am having some sort of pain that I thought meant hip replacement coming up. What a dismaying thought.  

I casually mentioned it to my rheumatologist, not realizing this is something she could help with. Ah, but she could. She suggested Kenalog injections in my lower back. Hmm, would this affect my kidneys in some negative way, I wondered. Although she readily gave me the information I wanted [or so I thought], I’m going to explore it for you today. 

Starting at the beginning, we’ll need a definition. No problem, Yourdictionary, can supply one. 

“A trademark for formulations of the drug triamcinolone” 

Wonderful, just wonderful. Anyone know what triamcinolone is? Back to Yourdictionary. 

“A synthetic glucocorticoid, C21 H27 FO6 , [sic] used as an anti-inflammatory drug in the treatment of allergic and respiratory disorders.” 

Well, that really helped, didn’t it, especially since I have neither allergy nor respiratory disorders. Okay, let’s do what we have to. [Yourdictionary is getting quite a bit of traffic from us today.] 

“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.” 

Steroid? Cortisone? Why didn’t they just say so in the first place? 

Now that we finally know what Kenalog is, let’s figure out what it does and how it works. I crossed the pond, so to speak, to get the United Kingdom’s National Health Service take on this.  

“Steroids are a manmade version of hormones normally produced by the adrenal glands, 2 small glands found above the kidneys. 

When injected into a joint or muscle, steroids reduce redness and swelling (inflammation) in the nearby area. This can help relieve pain and stiffness. 

When injected into the blood, they can reduce inflammation throughout the body, as well as reduce the activity of the immune system, the body’s natural defence against illness and infection. 

This can help treat autoimmune conditions, such as multiple sclerosis (MS), which are caused by the immune system mistakenly attacking the body. 

Steroid injections are different from the anabolic steroids used illegally by some people to increase their muscle mass.” 

What next? I know, let’s find out if there are any side effects. eMedicineHealth shocked me. I had been told none of this. 

“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. 

Steroids can affect growth in children. Tell your doctor if your child is not growing at a normal rate while using this medicine. 

Common side effects may include: 

• skin changes (acne, dryness, redness, bruising, discoloration); 
• increased hair growth, or thinning hair; 
• nausea, bloating, appetite changes; 
• stomach or side pain; 
• cough, runny or stuffy nose;  
• headache, sleep problems (insomnia); 
• a wound that is slow to heal; 
• sweating more than usual; or 
• changes in your menstrual periods. 

This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.” 

Was there anything else I should have been told? I turned to Bristol Meyers Squib’s leaflet: 

“You must tell your doctor if: 

• You have had any recent infection [including tuberculosis (TB)] 
• You have had recent bowel surgery 
• You have, or have had a bowel disorder or stomach ulcer 
• You have an infection or inflammation of the veins in your legs 
• You have had any mental health disorders or epilepsy 
• You have had any kidney, liver or thyroid (gland in the neck) problems as the dose of Kenalog may need to be adjusted 
• You have recently suffered from any form of cancer 
• You have thin or brittle bones (osteoporosis) 
• You have myasthenia gravis (a disease which causes weak muscles) 
• You have high blood pressure or heart failure 
• You or someone in your family has glaucoma (increased pressure in your eyes) 
• you [sic] have visual disturbances, loss of vision, eye inflammation (red, bloodshot aching eye) and viral retinitis (inflammation of retina caused mainly by cytomegalovirus). Inflammation of the retina can affect your vision if not treated. Symptoms of inflammation includes experiencing loss of vision, general blurriness of vision, blind spots, seeing flashes of light or floaters (dark spots and squiggles in vision). 
• You are diabetic as your insulin dose may need to be changed” 

Nothing to be concerned about here. My rheumatologist knew all about my CKD, pancreatic cancer, and high blood pressure. Somewhere along my researching, I came across mention that Kenalog might cause your blood glucose to rise. I wish I’d been told that in advance since I’ve been going slightly insane trying to figure out why mine was rising. 

Until next week, 

Keep living your life! 

Clearing Out

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

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

The Mayo Clinic informs us that: 

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

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

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

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

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

• bleeding from the rectum 

• chronic constipation 
• chronic diarrhea 
• stomach pain 

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

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

A doctor may recommend a colonoscopy for those who: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Lupus Joins the Family

There’s been a wedding in the family and the bride has lupus. Now there’s something I’d never thought about. I mean lupus, not weddings. Looks like it’s time to do just that. I’d heard the word and had my ideas as to what it meant, but let’s allow my favorite dictionary, the Merriam-Webster, define the disease for us:

Photo by Trung Nguyen on Pexels.com

“any of several diseases characterized by skin lesions”

That’s a little too general for me. Let’s see if we can get more specific. The Lupus Foundation was tremendously helpful here:

“Systemic lupus erythematosus (SLE)

Systemic lupus is the most common form of lupus—it’s what most people mean when they refer to ‘lupus.’ Systemic lupus can be mild or severe.

Cutaneous lupus erythematosus

This form of lupus is limited to the skin and can cause many types of rashes and lesions.

Drug-induced lupus erythematosus

This is a lupus-like disease caused by certain prescription drugs.

Neonatal lupus

Neonatal lupus is not a true form of lupus. It is a rare condition that affects infants of women who have lupus and is caused by antibodies from the mother acting upon the infant in the womb.”

Of course, this is a kidney disease blog, so I wanted to know what, if anything, lupus had to do with the kidneys. By a process of elimination, we must mean SLE. We’re not interested in solely the skin, drugs, or newborns.

Notice, this is Systemic Lupus Erythematosus. You’re right; we need another definition. This time I turned to Dictionary.com for the definition of erythematosus:

“abnormally inflamed or reddened”

This is caused by the capillaries under the skin being dilated by accumulated blood.

Hmm, did you realize that the word ‘systemic’ was also a clue that this is the kind of lupus that affects the kidneys? Maybe a reminder of what the renal system is would be a good idea here. Oh, you should know that the renal system is also called the urinary system. Britannica.com offers a simple explanation of what this is:

“renal system, in humans, organ system that includes the kidneys, where urine is produced, and the ureters, bladder, and urethra for the passage, storage, and voiding of urine.”

We need another piece of information. Healthline has it:

“The immune system normally fights off dangerous infections and bacteria to keep the body healthy. An autoimmune disease occurs when the immune system attacks the body because it confuses it for something foreign. There are many autoimmune diseases, including systemic lupus erythematosus (SLE).”

Whoa! So, our bodies can attack our renal systems [among other systems]. If it does, what happens to us? The Mayo Clinic answers this question for us:

“Lupus nephritis is a frequent complication in people who have systemic lupus erythematosus — more commonly known as lupus.

Lupus is an autoimmune disease. It causes your immune system to produce proteins called autoantibodies that attack your own tissues and organs, including the kidneys.

Lupus nephritis occurs when lupus autoantibodies affect structures in your kidneys that filter out waste. This causes kidney inflammation and may lead to blood in the urine, protein in the urine, high blood pressure, impaired kidney function or even kidney failure.”

Reminder: nephritis means inflammation of the kidneys. Let’s see if we can get an explanation that draws this information together. The CDC has just the one:

“Systemic lupus erythematosus (SLE), is the most common type of lupus. SLE is an autoimmune disease in which the immune system attacks its own tissues, causing widespread inflammation and tissue damage in the affected organs. It can affect the joints, skin, brain, lungs, kidneys, and blood vessels. There is no cure for lupus, but medical interventions and lifestyle changes can help control it.”

We haven’t looked at the symptoms yet:

“SLE may first appear as extreme tiredness (fatigue), a vague feeling of discomfort or illness (malaise), fever, loss of appetite, and weight loss. Most affected individuals also have joint pain, typically affecting the same joints on both sides of the body, and muscle pain and weakness. Skin problems are common in SLE. A characteristic feature is a flat red rash across the cheeks and bridge of the nose, called a “butterfly rash” because of its shape. The rash, which generally does not hurt or itch, often appears or becomes more pronounced when exposed to sunlight. Other skin problems that may occur in SLE include calcium deposits under the skin (calcinosis), damaged blood vessels (vasculitis) in the skin, and tiny red spots called petechiae. Petechiae are caused by a shortage of cells involved in clotting (platelets), which leads to bleeding under the skin. Affected individuals may also have hair loss (alopecia) and open sores (ulcerations) in the moist lining (mucosae) of the mouth, nose, or, less commonly, the genitals.”

Thank you to MedlinePlus for the above information.

How can life style changes affect lupus, I wondered. Ah, but then I found WebMD’s list of triggers for a flare [episode]:

“Common lupus triggers include:

Overwork

Lack of sleep

Stress

Sun exposure

Fluorescent or halogen lights

Infection

Injury

Stopping your lupus medicines

Other lupus drugs”

The same site has suggestions for dealing with lupus on a daily basis.

Okay, all there is to cover now is diagnosing lupus. Hah! There’s so much more information available. A new site for us, National Institute of Arthritis and Musculoskeletal and Skin Diseases, offers the following as far as diagnosing:

“Asking about your medical history and symptoms, and, if necessary, reading your previous medical records.

Asking if anyone in your family has lupus or other autoimmune diseases.

Performing a complete physical exam.

Taking samples of blood for laboratory tests, such as:

Antinuclear antibodies (ANA), a sensitive test for lupus. Almost all people with lupus with [sic] have a positive ANA. However, having a positive ANA does not mean you have lupus since totally healthy people can have a positive ANA.

Antiphospholipid antibodies, anti-smith, and anti-double-strand DNA antibodies, which doctors order when you have a positive ANA and can help determine if you have lupus.

Complete blood counts, to check for low platelet counts, low red blood cell counts, and low white blood cell levels, which can happen if you have lupus.

Metabolic panel to look for changes in kidney function.

Taking urine samples to check for abnormal levels of protein in the urine.

Performing a biopsy of the skin or kidney (when labs indicate there may be a problem with the kidney) by taking a small sample of tissue to examine under a microscope.”

Notice the mention of the kidneys.

Until next week,

Keep living your life!

Bet You Never Heard of This Kind of Duplex

I’ve been writing this blog for over a decade and am continually amazed that new topics keep coming up. There is so much to chronic kidney disease. Today’s new topic is duplex kidneys. You read that correctly: not duplex housing units, but duplex kidneys. 

Everyone know what duplex means? Haha, you’re so clever. Indeed, we are turning to my favorite dictionary since college over 50 years ago. The Merriam-Webster Dictionary tells us it means, 

“1a: having two principal elements or parts: DOUBLE, TWOFOLD 

b: having two complementary polynucleotide strands of DNA or of DNA and RNA 

2: allowing telecommunication in opposite directions simultaneously “ 

This is the adjective (describes a noun or pronoun) definition of the word. There’s also a noun (person, place, thing, or idea) definition, and a verb (action word) definition. In our case, we need the adjective definition because we are describing the kidney. Specifically, we need definition 1a. 

I know, I know, enough with the English lesson and on to the actual duplex kidney. A new source, Denver Urology Associates, explains duplex kidneys: 

“Duplex kidney is the duplication of the ureter tube, which drains urine from the kidney to the bladder. The condition results in two tubes rather than the normal single ureter tube for each kidney. 

Duplex kidney (also known as duplicated collection system) occurs in about 1 percent of children and usually requires no medical treatment. Medical concerns relate to obstruction of urine flow or urine flowing back into the kidney. 

The function of the kidneys is to filter waste from the blood and convert it to urine to be dispelled from the body. The urine travels from the kidney to the bladder via the ureter tube. The bladder expels urine through the urethra tube, which emerges at the tip of the penis in boys and at the upper region of the vagina in girls. 

In the duplex kidney condition, the kidney forms in two, duplicate parts with separate ureter tubes, as well as a separate blood supply. In about half of duplex kidney cases, both kidneys are affected with the duplicate ureter and blood supply. 

These double ureter tubes may join together in a ‘y’ shape before they reach the bladder and combine their delivery of urine. Or in other instances, each duplicate ureter will drain into the bladder via its own attachment. 

In either case, the result is the same — and generally the same as in a normal kidney with only one ureter.” 

Considering one of the babies in my daughter’s social circle has been having kidney problems, I wondered what the symptoms of duplex kidneys are. I turned to the UK’s Top Doctors for answers: 

“Duplex kidneys and duplicated ureters that drain directly into the bladder rarely cause any symptoms. 

However, if there is a complete second ureter, this often functions poorly and can be connected to a number of problems: 

Urinary tract infections (UTIs) – problems in urine drainage make it easier for bacteria to enter the urine and travel to the bladder. Under certain conditions, infections can even spread up to the kidneys. 

Ureterocele – the end of the ureter doesn’t develop properly, causing urine to be obstructed and become backed up. The ureter begins to swell and balloon where it enters the bladder and the length of the tube may become swollen as more urine backs up along it. 

Vesicoureteral reflux – urine is able to flow back through the ureter, sometimes even as far as the kidney. This may be because of an abnormal connection between the ureter and the bladder or as a result of a ureterocele. 

Hydronephrosis – the ureter and kidney swell due to urine being backed up. This may be due an abnormal connection between the ureter and the bladder or as a result of a ureterocele, and can lead to kidney damage. 

Ectopic ureter – the ureter does not connect to the bladder, instead being blocked or leaking into another part of the body. This can lead to vesicoureteral reflux, hydronephrosis, swelling, and incontinence.” 

Logically, the next question would be, “How are duplex kidneys diagnosed?” Children’s Hospital in Colorado had the answer: 

“A duplex kidney is most commonly diagnosed by using an ultrasound scan. This is a simple test that looks at the kidney and it is not painful. Sometimes it is necessary to do additional tests, which can include a voiding cystourethrogram (VCUG), where a catheter is placed into the bladder and X-rays are taken as the bladder is filled. Another test used to diagnose this condition is a renogram, where the function of the kidney is evaluated.” 

Now here’s a surprise. This is what you do if your baby has a duplex kidney. Doctor of Internal Medicine, Anthony L. Komaroff, tells us, 

“No treatment is needed. There is no harm to the kidney, though some people with duplex kidneys are more prone to urinary infections, reflux and blockages of the urinary tract.” 

I’m not a doctor, but that didn’t sound right to me, so I looked at site after site to check on it. It turns out that while a duplex kidney may not need treatment, the problems they may cause do need treatment. That made more sense to me, especially as the baby I mentioned is being treated for vesicoureteral reflux. I have no idea if she has duplex kidneys, but it seems vesicoureteral reflux does need to be treated. 

The Children’s Hospital of Philadelphia put this into perspective for us: 

“Duplex kidneys are a normal variant, meaning that they occur commonly enough in healthy children to be considered normal. They occur in 1 percent of the population, and most cause no medical problems and will require no treatment.” 

Oh, that means if the baby in question’s vesicoureteral reflux was caused by duplex kidneys, she does NOT have chronic kidney disease. I know one mama who’s going to be very happy when she reads today’s blog. 

Enjoy your holidays and be safe! Remember that any of the SlowItDownCKD book series would be a really good gift to give someone with CKD, their families and their friends. Talking about friends, one suggested that your primary care doctor could learn a lot about CKD from these books, too. By the way, that’s one book a year since 2010. Love, peace, and joy to all of you. 

Until next week, 

Keep living your life! 

And So It Begins

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

Photo by Francesco Ungaro on Pexels.com

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

Duke Medical’s site is what sparked my interest: 

“Ascent of the kidneys 

The kidneys initially form near the tail of the embryo. 

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

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

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

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

“A. Duplication of the urinary tract 

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

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

B. Renal-Coloboma syndrome 

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

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

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

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

C. Nephroblastoma (Wilms Tumor) 

found in infants from 0-24 months of age 

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

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

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

D. Polycystic kidney disease 

can arise due to a variety of factors: 

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

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

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

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

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

Until next week, 

Keep living your life! 

Back to Peds

For someone who never planned to write about pediatric kidney issues, here I am again writing about pediatric kidney issues. It seems the mothers of all those babies in my life I’ve mentioned before like to visit me. One of them was a bit upset during her visit, so – being me – I asked what was wrong. 

Her answer was surprising. It seems her little one [I think he’s about five months old] was born with urine reflux in both kidneys. I’d heard of reflux before, but urine reflex? She explained and I wondered why she wasn’t more upset. She explained that, too. But, as usual, I’m getting ahead of myself. 

Let’s start with what it is. First of all, she used the term VUR before telling me it was urine reflux. Well, what’s the ‘V’ stand for?  Turns out the medical term for this condition is VUR or Vesicoureteral Reflux. Okay, so what’s that? I turned to one of my old reliable sources for the answer, NIDDK, which is the National Institute of Diabetes and Digestive and Kidney Diseases. 

“Vesicoureteral reflux (VUR) is a condition in which urine flows backward from the bladder to one or both ureters and sometimes to the kidneys. VUR is most common in infants and young children. Most children don’t have long-term problems from VUR. 

Normally, urine flows down the urinary tract, from the kidneys, through the ureters, to the bladder. With VUR, some urine will flow back up—or reflux—through one or both ureters and may reach the kidneys…. 

VUR can cause urinary tract infections (UTI) [Gail here: A UTI may be the signal to test for VUR.] and, less commonly, kidney damage. The two main types of VUR are primary VUR and secondary VUR. Most children have primary VUR.” 

Oh, then what’s secondary VUR? Thank you to the Cleveland Clinic for the following information: 

Photo by Anna Shvets on Pexels.com

“Secondary VUR occurs when a blockage in the urinary tract causes an increase in pressure and pushes urine back up from the urethra into your child’s bladder, ureters and even kidneys. The blockage could result from an abnormal fold of tissue in the urethra that keeps urine from flowing freely out of your child’s bladder. Another cause of secondary VUR might be a problem with nerves that cannot stimulate the bladder to release urine. Children with secondary VUR often have bilateral reflux.” 

I asked the dad – since I felt I was leaving him out of the conversation – if the baby had bilateral reflux. Yes, he did. But then the dad explained that there are five grades of VUR. This is starting to get a bit complicated. I turned to The Urology Care Foundation for help in understanding this: 

“Grade I: urine reflux into the ureter only 

Grade II: urine reflux into the ureter and the renal pelvis (where the ureter meets the kidney), without distention (swelling with fluid, or hydronephrosis) 

Grade III: reflux into the ureter and the renal pelvis, causing mild swelling 

Grade IV: results in moderate swelling 

Grade V: results in severe swelling and twisting of the ureter” 

This diagram is The Urology Care Foundation’s, too. I found it helpful. Hoping you will, too. 

 
Let’s say VUR is suspected. What now? Cedars-Sinai explained: 

• “Voiding cystourethrogram (VCUG). A VCUG is a type of X-ray that examines the urinary tract. The healthcare provider puts a thin, flexible tube (catheter) in the urethra. This tube drains urine from the bladder to the outside of the body. The provider fills the bladder with a liquid dye. X-ray images are taken as the bladder fills and empties. The images will show if there is any reverse flow of urine into the ureters and kidneys. 
• Renal ultrasound (sonography). This is a painless test that uses sound waves and a computer to create images of body tissues. During the test, a healthcare provider moves a device called a transducer over the belly in the kidney area. This sends a picture of the kidney to a video screen. The healthcare provider can see the size and shape of the kidney. He or she can also see a growth, kidney stone, cyst, or other problems.” 

Wait a minute. I’d forgotten that each of the parents had explained this to me at different times. 

Of course, my primary concern was what do you do about VUR? Again, the parents of the baby had explained, but I wanted to give you a medical source, in addition, so I went to Mayo Clinic: 

“UTIs require prompt treatment with antibiotics to keep the infection from moving to the kidneys. To prevent UTIs, doctors may also prescribe antibiotics at a lower dose than for treating an infection. 

A child being treated with medication needs to be monitored for as long as he or she is taking antibiotics. This includes periodic physical exams and urine tests to detect breakthrough infections — UTIs that occur despite the antibiotic treatment — and occasional radiographic scans of the bladder and kidneys to determine if your child has outgrown vesicoureteral reflux. 

Surgery 

Surgery for vesicoureteral reflux repairs the defect in the valve between the bladder and each affected ureter. A defect in the valve keeps it from closing and preventing urine from flowing backward. 

Methods of surgical repair include: 

Open surgery. Performed using general anesthesia, this surgery requires an incision in the lower abdomen through which the surgeon repairs the problem. This type of surgery usually requires a few days’ stay in the hospital, during which a catheter is kept in place to drain your child’s bladder. Vesicoureteral reflux may persist in a small number of children, but it generally resolves on its own without need for further intervention. 

Robotic-assisted laparoscopic surgery. Similar to open surgery, this procedure involves repairing the valve between the ureter and the bladder, but it’s performed using small incisions. Advantages include smaller incisions and possibly less bladder spasms than open surgery. 

But, preliminary findings suggest that robotic-assisted laparoscopic surgery may not have as high of a success rate as open surgery. The procedure was also associated with a longer operating time, but a shorter hospital stay. 

Endoscopic surgery. In this procedure, the doctor inserts a lighted tube (cystoscope) through the urethra to see inside your child’s bladder, and then injects a bulking agent around the opening of the affected ureter to try to strengthen the valve’s ability to close properly. 

This method is minimally invasive compared with open surgery and presents fewer risks, though it may not be as effective. This procedure also requires general anesthesia, but generally can be performed as outpatient surgery.” 

Don’t miss the key word in today’s blog: OUTGROWN. It is possible for babies to outgrow VUS. 

Until next week,

Keep living your life!

It’s Seasonal

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

A few reminders first. According to Medical News Today: 

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

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

I started seeing her for osteoarthritis decades ago. 

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

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

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

Photo by Ketut Subiyanto on Pexels.com

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

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

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

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

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

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

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

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

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

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

Other risk factors include: 

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

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

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

Until next week, 

Keep living your life! 

Support Groups

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

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

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

“Benefits of participating in a support group may include: 

Feeling less lonely, isolated or judged 

Reducing distress, depression, anxiety or fatigue 

Talking openly and honestly about your feelings 

Improving skills to cope with challenges 

Staying motivated to manage chronic conditions or stick to treatment plans 

Gaining a sense of empowerment, control or hope 

Improving understanding of a disease and your own experience with it 

Getting practical feedback about treatment options 

Learning about health, economic or social resources” 

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

Photo by Tima Miroshnichenko on Pexels.com

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

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

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

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

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

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

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

Professionally Facilitated Support Groups 

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

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

Online Support Groups 

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Asians too

Last week, I wrote about omitting the category ‘Afro-American’ from the eGFR equation. I thought that was the only issue with the eGFR. You can imagine my surprise when a reader contacted me to tell me her nephrologist won’t use the eGFR to stage her chronic kidney disease because she is Asian.  

Of course, I felt obliged to research the why of this for her, which means for me…. you, too. [That’s just who I am.] Researching this was not easy, but it was important. A study published in 2019 in the journal BMC Nephrology, [Bio Med Central] explains why. 

Photo by RODNAE Productions on Pexels.com

“Asian Americans (AA)s are projected to be the second fastest growing racial/ethnic group in the U.S and are projected to nearly double to 9.3% of the total population by 2060…. Currently, AAs represent 5.8% of the overall U.S. population … and there are approximately 20.4 million Asian adults and children living in the U.S. … Furthermore based on the 2016 U.S. Census, major Asian subgroups of people reported were Chinese (except Taiwanese) (4.9 million), Asian Indian (4.1 million), Filipino (3.9 million), Vietnamese (2.1 million), Korean (1.8 million), and Japanese (1.5 million).” 

Well, what’s the problem? Why isn’t the eGFR accurate in these populations? I repeatedly read that it has to do with the lean muscle mass [Here we go again with muscle mass.] and eating little meat. I found little on the topic in medical journals and even less on websites re nephrology for lay people like you and me. However, PubMed did offer the following: 

“Low muscle mass may cause considerable overestimation of single measurements of eGFRCr . Muscle wasting may cause spurious overestimation of repeatedly measured eGFRCr . Implementing muscle mass-independent markers for estimating renal function, like cystatin C as superior alternative to creatinine, is crucial to accurately assess renal function in settings of low muscle mass or muscle wasting.” 

The “Cr” at the end of eGFR means it was calculated using serum creatinine. Serum means blood. 

And eating little meat? Whatever does that have to do with your eGFR? The National Kidney Foundation had that one covered in their Health Unlocked, 

” Well, meat (cooked) contains creatinine so when you eat meat your serum creatinine naturally increases. Serum creatinine is the serum marker whose value is usually used in eGFR calculations. And so your diet influences this eGFR measurement 

Eat less (or no meat) and your serum creatinine will probably fall. Consequently, your eGFR would improve. 

But that says nothing about your actual GFR (actual rate at which blood is being filtered). Your actual GFR is the true measure of your kidney performance, not an number which is being influenced by what you happen to be eating around that period of time. 

Indeed, you might well find your eGFR is improving (because you’ve stopped eating meat) but your GFR (which usually isn’t being tracked) is disimproving (because CKD is a progressive disease)” 

All this talk of eGFR. Let’s back track a little and talk about that. Way back in 2011, I defined the term in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, my very first CKD book:  

“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.” 

Got it? Let’s move on to the 24 Hour Urine Test, which is what my Asian reader told me her nephrologist uses to determine her GFR. How about a definition first? This is from Johns Hopkins Medicine: 

“A 24-hour urine collection is a simple lab test that measures what’s in your urine. The test is used to check kidney function. A 24-hour urine collection is done by collecting your urine in a special container over a full 24-hour period. The container must be kept cool until the urine is returned to the lab. 

Urine is made up of water and dissolved chemicals, such as sodium and potassium. It also contains urea. This is made when protein breaks down. And it contains creatinine, which is formed from muscle breakdown. Normally, urine contains certain amounts of these waste products. It may be a sign of a certain disease or condition if these amounts are not within a normal range. Or if other substances are present.” 

Ah, now it makes sense. While creatinine is being tested, it is not the only thing being tested. Notice sodium, potassium, and urea are also being tested. Clever. 

On another note entirely, are you aware of the number of CKD Facebook Groups there are? Quite a number are hosted by James Myers, better known as Uncle Jim. Why? In his words: 

“I began to understand my role. I made a conscious choice. I wanted to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for clinic mates who could not advocate for themselves. I did not like the way the dialysis clinics, the government and the care staff pushed around or neglected my fellow Kidney Patients. The last straw for me was when they began to push for the cutting of funds to dialysis patients and clinics. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if I did not accept this responsibility, maybe no one else would.” 

 Some of his groups and the ones he frequently posts on are: 

CKD Patients Group 

Dialysis & Kidney Disease 

Encouraging Kidney Donation 

Kidney Advocates 

Kidney Cancer 

Kidney Disease Ideas and Diet 1 

Kidney Education 

Kidney Help for You 

Kidneys Stories 2 And Live Broadcasts With Uncle Jim 

Kidney Transplant Success Stories (JM) 

Kidney Writers 

Kidneys and Celebrities 

Kidneys and Climate Change 

Kidneys and Diabetes 

Kidneys and Insomnia 

Kidneys and Medicare 

Kidneys and Medications 

Kidneys and Other Surgeries 

Kidneys and Social Media 

Kidneys and Studies 

Kidneys and the Arts 

Kidneys and the Coronavirus 

Kidneys and Your Heart 

Kidneys and Your Parathyroid 

Kidneys and Vets 

Living on Dialysis 

Living with Chronic Kidney Disease (CKD) 

Love Your Kidneys!!! 

Pre-Emptive Kidney Transplants: Transplant Before Dialysis 

The Kidney Warriors 

The Relationship Between Kidneys and Your Gut 

Jim has over 95 groups, so it’s obvious I haven’t listed them all. That’s due to a lack of space rather than favoritism. I like all his groups. Surely, there’s something for you in one of these groups, so if you’re on Facebook, peruse them and see which resonate with you. 

Until next week, 

Keep living your life! 

Old vs New

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

Photo by Godisable Jacob on Pexels.com

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Photo by Alex Green on Pexels.com

However, the same source has several warnings for us: 

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

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

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

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

Dr. Hahn’s recommendation? 

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

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

Until next week, 

Keep living your life! 

NORD

Last week, I wrote about a rare kidney disease: aHus. I also wrote about the National Organization for Rare Disorders [NORD]. That got me to thinking. How many people who may need their services really know about NORD, I questioned.

Here comes the famous ‘just in case.’ Just in case you are one of these patients, allow me to introduce you to NORD. According to their website: 

“If you live with a rare disease, or love someone who does, NORD is here to help you. For more than 30 years, we have been providing services for patients and their families, rare disease patient organizations, medical professionals, and those seeking to develop new diagnostics and treatments. We are here to support every member of the rare disease community with programs and services focused on one ultimate goal: to improve the lives of individuals and families affected by rare diseases.” 

I can just see you now thinking to yourself, just what are the rare kidney diseases? The National Kidney Foundation was kind enough to list many of them for us: 

• “Acute Kidney Injury 
• Alport Syndrome 
• Nephropathic Cystinosis 
• Cystinuria 
• Fabry Disease 
• Focal Segmental Glomerular Sclerosis (FSGS) 
• Membranous Nephropathy 
• IgA Nephropathy 
• Nephrotic Syndrome 
• Polycystic Kidney Disease 
• Refractory Gout 
• Complement 3 Glomerulopathy (C3G) 
• distal Renal Tubular Acidosis (dRTA)” 

What’s that? Where’s aHus, you ask. This list is not complete, but it does give you an idea of how many rare diseases of the kidneys you may not have heard of before. While I’ve written about some of these, others are brand new to me, too. Today is not a day about a specific disease. Today is NORD’s day. 

I was curious as to what NORD has to offer those with a rare kidney disease. My kidney disease awareness buddy, Uncle Jim [James Myers] is often in Washington to advocate for us as kidney patients. Since 1983, so have representatives of NORD. In addition, they advocate on the state and local levels. Their advocacy is to ensure policy reflects the needs of these patients. 

My favorite part of NORD’s offerings is their educational program. Patients, their families, friends, and others in their lives are offered education about whichever rare disease they have. Doctors and others in the medical profession are also offered educational about specific rare diseases. 

What struck me as being so necessary is covered here, too. I felt it was important to explain their Patient Assistance Program correctly since it seems quite generous that I went right back to their website for a quote: 

“NORD pioneered Patient Assistance Programs in 1987 and we are the leader in patient-focused PAPs today. NORD programs include free drug, co-pay and premium assistance, travel/lodging assistance for clinical trials, and expanded or emergency access.” 

Considering the price of drugs today, although President Biden is doing all he can as fast as he can, this is important. The co-pay and premium assistance is right up there in importance. 

NORD mentors patient organizations. I was impressed with their easily understood, comprehensive explanation so we’ll go back to their website for that: 

“Disease-specific patient organizations are crucial partners in our mission to serve rare disease patients and their families. We provide capacity building and mentorship services to start-up and established organizations through one-on-one guidance, webinars, in-person meetings, and toolkits to help them establish, strengthen and grow.” 

This organization doesn’t miss a beat; it supplies research grants. So far, at least two FDA approved medications were discovered via these grants. It’s through these grants that more information about rare diseases is being discovered. 

This national organization has partnerships with the European Organization for Rare Diseases (EURORDIS) and the Japanese Patient Association (JPA). Not only that, but  

“NORD represents the U.S. on both Rare Diseases International (RDI) and Rare Disease Day steering committees.” 

Photo by Buro Millennial on Pexels.com

Amazing how much NORD does and, if you’re anything like me, you never heard of it until you needed it. On their website, you’ll find 65 different rare diseases explained and even videos for Patients & Caregivers, Research &Science, Advocacy, and Medical Education. I took a peek at the Patient & Caregivers’ titles. While there were videos on gene editing and other interesting topics, I chose to go to ‘New Patients’. There I found nine pages of videos listed, some in Spanish. 

I haven’t’ yet mentioned the patient registries where you can enter your information and share your experiences with others around the world. You can learn from their experiences as well. All this information is helpful to research. The FDA, NIH, organizations, and experts are involved as well. You can even start your own registry if there isn’t one for your rare disease. Here’s the email address for registries: registryinquiry@rarediseases.org. This program is called IAMRARE.  

NORD offers links to a number of resources, both internal and external. If you think I admire NORD for all they offer to those with rare diseases, kidney or otherwise, you are correct. You have to remember that I’m not a doctor, so new information I bring to you is often new to me, too. 

Oh, before I close for this week, here’s the link to register for the upcoming 10/17 & 18 summit: 

Summit. All you have to do is click on that word. I’ve already linked it for you. I do need to tell you that this summit is pricey, even if you are a member of NORD. Of course, you can always read about it after the fact on their website.  

I do urge you to explore their website. If you find the summit too pricey for you [I did.], there are free webinars listed on their website, as well as the other sources of information. If I understood the information correctly, membership is open to organizations rather than individuals. Ah, maybe that’s why the summit is so pricey. I did see a registration category for Advocates. 

Enjoy exploring this wonderful website even if you don’t have a rare kidney disease or any other kind of rare disease. The learning opportunities are vast. 

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! 

What a Waste

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life!