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!

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!

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!

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!

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!

What a Lot of Inhibition

I received a complicated question from another constant reader. I was gratified that she prefaced her question by stating that she was not looking for medical advice, but information. That’s good because that’s all I can offer since I’m not a doctor. Her question dealt with ACE, ARB, and SG12 inhibitors and both eGFR and creatinine.

Photo by Karolina Grabowska on Pexels.com

Let’s start with some definitions so these don’t remain just alphabet soup to us. The Mayo Clinic is a good place to start. This is their definition of ACE inhibitor:

“Angiotensin-converting enzyme (ACE) inhibitors are medicines that help relax the veins and arteries to lower blood pressure. ACE inhibitors prevent an enzyme in the body from making angiotensin 2, a substance that narrows blood vessels. This narrowing can cause high blood pressure and forces the heart to work harder. Angiotensin 2 also releases hormones that raise blood pressure.”

Aha! So, we’re dealing with blood pressure here. Let’s see if that’s true of ARB inhibitors, too. I turned to Healthline for the following:

“Blood vessels supply blood and oxygen to the heart. This constant supply helps the heart function. Angiotensin II is a hormone made by our body, and it tightens the muscles of our blood vessels.

Angiotensin II also contributes to salt and water retention in our bodies. Increased salt in the body and tightened blood vessels may cause our blood pressure to rise. High blood pressure harms blood vessels.

Both ARBs and ACE inhibitors act on angiotensin II. But while ACE inhibitors limit the formation of angiotensin II, ARBs block certain receptors of angiotensin II. These receptors, known as AT1 receptors, are found in the heart, blood vessels, and kidneys.

When blood vessels tighten, they become narrow. This puts blood under greater pressure as it’s forced to move through a smaller-than-normal space. When ARBs block angiotensin II, this reduces the tightening of blood vessels. Blood pressure is then lowered.”

Hmm, so now we’re not only dealing with blood pressure, but also our heart and kidneys. Did you know that your nephrologist may prescribe either or both even if you don’t have blood pressure problems? That would be to protect your kidneys.

SG12 doesn’t start with an ‘a’. Is that significant? It turned out to be… and to actually be SGLT2, which stands for Sodium-glucose transport protein 2. The National Institutes of Health explained:

“SGLT2 inhibitors function through a novel mechanism of reducing renal tubular glucose reabsorption, producing a reduction in blood glucose without stimulating insulin release. Other benefits may include favorable effects on blood pressure and weight.” 

Well, this one may also affect blood pressure, but its primary purpose has to do with blood glucose. By the way, these are also called flozins: gliflozin, canagliflozin, bexagliflozin, dapagliflozin, empagliflozin, and ertugliflozin.

What probably would be helpful here is to remind you that diabetes and high blood pressure are the two most important causes of chronic kidney disease. Now, the remainder of the question had to do with these medications and slow eGFR decline and/or creatinine increase. Another reminder: as eGFR reduces, creatinine rises and vice-versa.

I’ll let the National Kidney Foundation start us off:

“ACE inhibitors and ARBs are known to slightly lower the estimated glomerular filtration rate (eGFR), a measure of how well your kidneys work. This might seem strange since the medicines are supposed to help people living with kidney disease.

In kidney disease, the kidneys are working under high stress. They work extra hard to keep filtering the blood. Unfortunately, this leads to faster ‘burnout’ or damage to the glomeruli (small filters in the kidneys) and speeds up worsening kidney disease.

These medicines lower the pressure in the kidneys. This gives the glomeruli (small filters in the kidneys) a chance to rest. In exchange, the eGFR goes down a little. However, this is not a sign of kidney disease getting worse. Over the long-term, people taking ACE inhibitors or ARBs have seen a much slower worsening of their CKD than people who are not taking either medicine, despite the small decrease in eGFR when starting the medicine.

In rare cases, your eGFR may go down too much after starting an ACE inhibitor or ARB. If this happens, your doctor may lower your dose or temporarily stop the medicine and investigate the cause.

Your doctor will likely check your eGFR before you start this medicine and again a few weeks after. Be sure to complete your blood tests as recommended by your doctor.”

What about SGL2? This one was a little harder to pinpoint. I went to as many websites as I could find that discussed SGL2 and eGFR. The consensus seems to be that eGFR will dip in the first two weeks, but if the drug is continued, will rise again within 12 weeks. It was also considered that this is quite effective, so it is worth it to ride out the initial dip. Again, a reminder that as eGFR lowers, creatinine rises.

I think the National Library of Medicine sums the topic up nicely:

“ACE inhibitors/angiotensin receptor blockers (ARBs) and sodium-glucose cotransporter 2 (SGLT2) inhibitors can be used in combination to slow the rate of decline in GFR.”

Hopefully, today’s information was helpful not only to the reader who requested it, but also to all the other readers who hadn’t realized they wanted this information. I was delighted to learn how ACE/ARB works since I’m more a how than a why person.

Until next week,

Keep living your life!

Tipsy Is as Tipsy Does

I don’t drink. I just don’t like the taste of liquor. My husband doesn’t drink. It interferes with his medication. My young friend doesn’t drink. She’s breast feeding. Her cousin doesn’t drink. He’s allergic to alcohol. There’s another reason people don’t drink: they have chronic kidney disease.

I wanted to know how that worked, so learn along with me. My first stop was at the ever-trustworthy Healthline. By quoting the National Kidney Foundation, Healthline made it clear that drinking alcohol may affect healthy kidney function too and lead to CKD:

Photo by Chris F on Pexels.com

“At first, you might not have any symptoms of kidney damage from regular alcohol consumption. As the kidneys become overworked from heavy alcohol consumption, they will be less able to filter blood and maintain the correct water balance in the body.

As a result, you may experience the following symptoms:

• fatigue
• swelling of the legs, ankles, and feet due to fluid retention
• loss of appetite
• change in urine
• kidney pain”

Oh my. If that’s what can happen to healthy kidneys, what can happen to our damaged kidneys?

The National Kidney Foundation had a simple answer for us:

“Drinking alcohol affects many parts of your body, including your kidneys. A little alcohol—one or two drinks now and then—usually has no serious effects. However, excessive drinking–more than four drinks daily—can affect your health and worsen kidney disease. When experts talk about one drink, they are talking about one 12–ounce bottle of beer, one glass of wine, or one ounce (one shot) of ‘hard liquor.’”

I found that surprising because I had assumed all liquor was a no-no for CKD patients. My brother used to tell me repeatedly, “Assuming makes an ass out of you and me.” I guess he was right. Thanks, Paul.

Fresenius Kidney Care, [dialysis centers], explained more:

“Healthy kidneys work to remove excess waste, toxins, and fluid from your blood. When functioning properly, alcohol is one of the toxins that your kidneys filter from your body. However, alcohol can dehydrate your system, impairing your kidneys’ ability to function and maintain the right balance of fluids in your blood. Excessive alcohol consumption can also weaken or damage your kidneys, preventing them from filtering your blood properly. Drinking alcohol excessively can also increase your blood pressure, which over time, can cause damage to your kidneys.”

While all of this was interesting, it didn’t really get to the nitty-gritty of what alcohol does to the kidneys. It occurred to me that I could approach this from the other side, so I went to Recovery by the Sea’s website, an alcoholism recovery center, to see what they had to say about alcohol’s affect on the kidneys.

“Alcohol is one of the toxins that kidneys filter from the blood. While a drink or two on occasion is not going to be problematic, binge drinking and excessive, chronic drinking is likely to wreak havoc on the kidneys. Alcohol interferes with the kidneys’ toxin-filtering capability, thereby setting the stage for damage and an increased risk of health complications.

In addition to the kidneys’ ability to filter toxins, they also help maintain the right amount of fluid in the body. Alcohol has a dehydrating effect, one that markedly impairs the kidneys’ capacity to maintain fluid balance.

Another adverse effect of alcohol consumption on the kidneys is related to blood pressure. Drinking alcohol in excess can result in an increase in blood pressure both temporarily and over time. Alcoholics are more likely to have hypertension than those who drink moderately or not at all. Eventually, this can lead to chronically elevated blood pressure and is one of the most common causes of kidney disease.

It’s well-known that there’s also a risk of developing liver disease as a result of chronic drinking. The kidneys need adequate blood flow maintained at a certain level to filter the blood properly. Among alcoholics and persons with liver disease, the delicate balance of blood flow and blood filtering by the kidneys is disturbed.”

Did you know that alcohol may also be part of the problem in developing kidney stones? I didn’t until I read the following on The Asian Institute of Medical Sciences:

“The more you drink alcohol, the greater the chances of your getting kidney stones. The reason is very simple. Substituting alcohol for water can dehydrate you as it acts as a diuretic. You can prevent getting kidney stones by drinking copious quantities of water. Substituting water with alcohol would be counterproductive as your body would be constantly losing water. If your diet has too much salt in conjunction with high alcohol consumption, then your chances of developing kidney stones increase as it causes greater quantity of calcium in your urine. Further, you need to avoid foods high in phosphates like beans, dairy products, and nuts; and those which are high in oxalate, such as potato chips, French fries, beets, spinach, and nuts like the plague if your uric acid level is high. This combination of calcium and oxalates leads to the formation of renal calculi.
Alcohol might adversely affect magnesium exchange in the kidney tubules caused by a marked increase of magnesium excretion in the urine, leading to hypomagnesemia.”

KIdneyCareUK’s Kidney Kitchen has some sound advice for us:

“If you regularly drink as much as 14 units per week, it’s best to spread your drinking evenly over three or more days.

If you have one or two heavy drinking episodes a week, you increase your risk of death from long-term illness and injuries. Try to have several alcohol-free days over the week.

Avoid becoming dehydrated by making sure you consume non-alcoholic drinks in between the alcohol-containing ones.

Choose water, soda water, diet fizzy drinks (avoiding cola-style drinks) or no-added-sugar squash as healthier alternatives.

Red wine contains a little more potassium than white, so consider white wines rather than a glass of red with your meal if you are on a low-potassium diet.

Spirits are low in potassium and phosphate as well as lower in volume, so a good option if you need to restrict your fluid, but be mindful of the units. Consider using diet mixers or soda water if you have diabetes or are trying to lose weight (avoiding cola-style mixers due to their phosphate additive content).

Many wines, beers and lagers contain added phosphates and ciders are high in potassium so be mindful of this if you have been advised to lower potassium and/or phosphate in your diet.

Remember to incorporate other fluids you may be having into your fluid allowance, such as gravy, soups, ice creams, custards, creams and yoghurts.

For people with diabetes and CKD, alcohol may be safe to drink if you have your blood sugar level under control.

It’s always wise to check with your doctor or dietitian before incorporating alcohol into your diet and it is recommended that you combine your alcohol with food. Alcohol on an empty stomach can cause blood sugar levels to drop in those with diabetes. Additional ingredients in mixed drinks may also add carbohydrate that must be considered.

Finally, if you want to drink alcohol, please discuss this with your pharmacist and doctor as some medications do interact with alcohol.”

For a non-drinker, I now know more about alcohol than I’d ever wanted to. It’s worth it if you learned as much as I did.

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!

This Nutcracker is Not the One in the Nutcracker Suite

Today is my second grandson’s first birthday. So, I thought I’d look for some music he might like. There was always The Nutcracker Suite, I thought. Although it was written in 1892 by Tchaikovsky, it’s been a favorite of children everywhere ever since. I’m guessing that’s due to the ballet.

But I’m not writing about that nutcracker. I’m writing about nutcracker syndrome today. I promise this is not a joke. There is such a condition. This is the first time I’ve heard of it even though I’ve been writing about all things kidney since 2010, so don’t feel bad if you’ve never heard of it.

Let’s start at the beginning with a definition. One of my trusted sites, the Cleveland Clinic, explains it this way:

“Nutcracker syndrome is a condition that affects your left renal vein. This is the vein that carries blood away from your left kidney and back to your heart. Nutcracker syndrome is a type of extrinsic vein compression syndrome. In these syndromes, the structure of your blood vessels puts pressure on one of your veins.

If you have nutcracker syndrome, two arteries in your belly compress part of your left renal vein. This compression raises the blood pressure in your renal vein and forces some blood to flow in the wrong direction. As a result, nearby veins swell, causing symptoms and potentially leading to complications.”

Frankly, this sounds painful. I didn’t know which to explore first, symptoms or causes. I chose alphabetically. Remember, I was an English teacher for many, many years. So, causes it was.

India’s Icliniq, a second opinion site, offered both causes and risk factors:

“The specific causes of nutcracker syndrome vary from person to person. Sometimes, people are born with variations in the blood vessels that can result in the symptoms of nutcracker syndrome. The symptoms of nutcracker syndrome are commonly seen in females in their 20s and 30s. The factors that increase the risk of nutcracker syndrome are listed below:

1. Pancreatic tumors increase the risk of nutcracker syndrome because the vessels supplying the pancreas become damaged and compress the renal veins, resulting in nutcracker syndrome.
2. Curvature in the lower spine.
3. Tumors in the tissues present in the inner lining of the abdominal wall.
4. Nephroptosis (a condition in which the kidneys drop into the pelvis while standing).
5. Aneurysm in the abdominal aorta.
6. Sudden changes in the weight and height.
7. Enlargement of abdominal lymph nodes.
8. Pregnancy.”

I’d had a pancreatic tumor, but I didn’t develop nutcracker syndrome. I guess that makes me one of the lucky ones. I constantly marvel how we, as humans, find the good in everything: pancreatic cancer? Bad. No development of nutcracker syndrome: good. By the way, I also have curvature in the lower spine, but that doesn’t seem to be affecting anything.

Time to find out the symptoms now. MedicalNewsToday had that covered:

“The symptoms of NS [nutcracker syndrome] can vary depending on the extent of LRV [left renal vein] recompression. Some people do not experience any symptoms.

When symptoms occur, they may include:

• pain in the left flank, abdomen, or groin
• blood in the urine
• protein in the urine
• urinary tract infections
• kidney damage
• high blood pressure
• varicose veins
• enlarged veins in the testicles in males”

Wait a minute. Flank pain, protein in the urine, and high blood pressure may also be signs of chronic kidney disease. Is nutcracker syndrome considered a kidney disease? After a little digging, I found it is, indeed, a kidney disease although a rare one.

Since it is a rare disease, I wondered how it was diagnosed. Healthline to the rescue:

“First, your doctor will perform a physical exam. Next, they’ll take a medical history and ask about your symptoms to help them narrow down a possible diagnosis.

If they suspect nutcracker syndrome, your doctor will take urine samples to look for blood, protein, and bacteria. Blood samples can be used to check blood cell counts and kidney function. This will help them narrow down your diagnosis even further.

Next, your doctor may recommend a Doppler ultrasound of your kidney area to see if you have abnormal blood flow through your veins and arteries.

Depending on your anatomy and symptoms, your doctor also may recommend a CT scan or MRI to look more closely at your kidney, blood vessels, and other organs to see exactly where and why the vein is compressed. They might also recommend a kidney biopsy to help rule out other conditions that can cause similar symptoms.”

Let’s say [heaven forbid] that you or someone you love is born with or develops nutcracker syndrome. What can be done about it? Thank you to UCLA Health for the following:

“Patients with mild symptoms may be observed. Children may be given time to grow and weight gain can help others. For patients with severe symptoms, one of several procedures may be recommended based on anatomy, symptoms, age, and odds of symptom relief…. 

• Open or laparoscopic/robotic surgery involving repositioning of the renal vein in a way that frees it from compression (renal vein transposition)

• Open or laparoscopic/robotic surgery involving bypass of the compressed renal vein
• Autotransplantation of the left kidney to the pelvic vessels
• Endovascular approaches including placing a stent in the left renal vein”

I can’t help but wonder what the outcomes could be. After all, this is a rare disease. I turned to Orphanet for an answer. This is the portal for rare diseases and orphan drugs.

“As this is a benign condition, overall prognosis is excellent. In highly symptomatic patients, with severe pain, frank/recurrent hematuria requiring blood transfusion, active intervention needs to be considered. Prognosis following intervention is excellent.”

For those of you wondering, this is not a disease for which a change of lifestyle will help.

Now comes the information you’ve been waiting for. Why is it called nutcracker syndrome? We all know what a nutcracker looks like, right? Imagine a nutcracker squeezing your left renal vein. Ouch!

Until next week,

Keep living your life!

Yet Another Connection

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

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

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

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

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

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

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

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

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

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

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

“Triggers for lichen planus may include: 

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

One Causes the Other and the Other Causes the One

You can be immunocompromised without being a transplant. I know because I live with someone who is. Let’s just suppose he developed chronic kidney disease [Oh, no!]. Let’s see if this would further his CKD, or if his CKD would further the being immunocompromised.

We know that CKD is the progression of the decline of your kidney function for three months or more. Let’s go to my favorite dictionary yet again, the Merriam-Webster, for a definition of immunocompromised:

“having the immune system impaired or weakened (as by drugs or illness)”

Just in case the information is needed, let’s define the immune system, too.

“the bodily system that protects the body from foreign substances, cells, and tissues by producing the immune response and that includes especially the thymus, spleen, lymph nodes, special deposits of lymphoid tissue (as in the gastrointestinal tract and bone marrow), macrophages, lymphocytes including the B cells and T cells, and antibodies”

Well that certainly seems to cover it. Time to see what CKD and being immunocompromised have to do with each other, if anything. The National Institutes of Health starts us off on this exploratory journey:

“Impairment of the normal reaction of the innate and adaptive immune systems in chronic kidney disease predisposes patients to an increased risk of infections, virus-associated cancers, and a diminished vaccine response.”

You know, I’m not so sure I accepted that I’m immunocompromised before reading that. I feel more validated for still quarantining as much as possible and wearing a mask now. As usual, I want more information, so let’s find it.

PubMed offers us this information:

“Cardiovascular disease and infections are directly or indirectly associated with an altered immune response, which leads to a high incidence of morbidity and mortality, and together, they account for up to 70% of all deaths among patients with chronic kidney dysfunction. Impairment of the normal reaction of the innate and adaptive immune systems in chronic kidney disease predisposes patients to an increased risk of infections, virus-associated cancers, and a diminished vaccine response.”

This bit of information from the National Library of Medicine surprised me. Not only does CKD affect being immunocompromised, but being immunocompromised affects your CKD.

“The immune system and the kidneys are closely linked. In health the kidneys contribute to immune homeostasis, while components of the immune system mediate many acute forms of renal disease and play a central role in progression of chronic kidney disease.” 

We’re still not quite there. I want to know the mechanism of CKD causing us to be immunocompromised and vice-versa. I think I found the answer in Nature Reviews, but I’m not sure I understand it:

“The kidneys are frequently targeted by pathogenic immune responses against renal autoantigens or by local manifestations of systemic autoimmunity. Recent studies in rodent models and humans have uncovered several underlying mechanisms that can be used to explain the previously enigmatic immunopathology of many kidney diseases. These mechanisms include kidney-specific damage-associated molecular patterns that cause sterile inflammation, the crosstalk between renal dendritic cells and T cells, the development of kidney-targeting autoantibodies and molecular mimicry with microbial pathogens. Conversely, kidney failure affects general immunity, causing intestinal barrier dysfunction, systemic inflammation and immunodeficiency that contribute to the morbidity and mortality of patients with kidney disease.”

Hmm, maybe some definitions would help us understand. Let’s try that.

Pathogenic: specific causative agent (such as a bacterium or virus) of disease [Merriam-Webster Dictionary]

Autoantigens: Autoantigens are markers on cells inside your body that your immune system attacks even though they shouldn’t. Autoantigens cause autoimmune diseases. [Cleveland Clinic]

Sterile inflammation: Inflammation in the absence of pathogens and their products is referred to as sterile inflammation. [Annual Review]

Dendritic Cells: Dendritic cells are sentinels that constantly survey the kidney microenvironment for injury or infection; they recruit and regulate immune effector cells such as macrophages, T cells and neutrophils to protect the host. [Nature Reviews]

T-Cells: T cell, also called T lymphocyte, type of leukocyte (white blood cell) that is an essential part of the immune system. [Britannica]

Wow. That did work. I understand the mechanism now. Do you?

What would tip you off that you’re immunocompromised besides having CKD? Remember that CKD is not the only cause of being immunosuppressed. You probably want to keep an eye on other symptoms for those you care for. According to the Mayo Clinic:

• “Frequent and recurrent pneumonia, bronchitis, sinus infections, ear infections, meningitis or skin infections
• Inflammation and infection of internal organs
• Blood disorders, such as low platelet count or anemia
• Digestive problems, such as cramping, loss of appetite, nausea and diarrhea
• Delayed growth and development
• Autoimmune disorders, such as lupus, rheumatoid arthritis or type 1 diabetes”

CKD or not, you want to deal with that lack of immunity. VeryWellHealth has some advice that almost sounds like common sense to me:

“In general, it’s the cause of the immunodeficiency that’s treated, not the immunodeficiency itself. One treatment for immunodeficiency may be a bone marrow transplant. However, that’s only an appropriate treatment for individuals whose bone marrow isn’t producing enough immune cells.

When the immunodeficiency itself isn’t treatable, there are still other options. For example, there are therapies available that can help individuals fight off certain infections. You may also be more likely to need antibiotics or antiviral medications to fight diseases that immunocompetent people can ward off without treatment.”

You know what to do. You have chronic kidney disease. You need to treat it. Adhere to the kidney diet, get enough sleep, take your high blood pressure medication, exercise, avoid drinking, stop smoking, and keep yourself hydrated. The treatment for your immune deficiency is the same as the treatment for your CKD.

Here’s hoping you all realize that you are immunocompromised by virtue of having chronic kidney disease and treat yourself accordingly.

Until next week,

Keep living your life!

Kidney Diffuse Parenchymal Disease Bilateral

Yep, that was my reaction too when a reader asked me what this was. I took a bunch of guesses and then asked her to please speak with her nephrologist about this. Sometimes, I get asked doozies. I turned to the National Kidney Foundation for a simple explanation of this condition:

“’Bilateral renal parenchymal disease’ is a doctor term for scarring changes in the substance of both kidneys.”  

I did look for a simple explanation, but that’s too simple for me. For instance, what are these ‘scarring changes’?

Oh, wait. Dr. Prashant C Dheerendray at Dharma Kidney Care in Bangalore, India, tells us something we should be aware of before we start investigating anything about this condition:

““Renal parenchymal disease” is a term used to describe the appearance of the kidneys on ultrasound. It doesn’t give the complete information about the functioning of kidneys in a given patient. Hence, as a nephrologist, I need more information from blood and urine tests before deciding whether it is dangerous or not.”

Time to hear from my favorite dictionary for some help:

“of, relating to, or affecting the right and left sides of the body or the right and left members of paired organs”

That makes perfect sense since bi is from Latin and means two, while lateral is also from Latin and means side. Most people have one kidney on each side of their body. Hence, bi for two and lateral for sides. Many thanks to the Merriam-Webster Dictionary, as usual.

Uh-oh, we forgot ‘diffuse.’ Back to the dictionary:

“spread or cause to spread over a wide area or among a large number of people”

I suspect including diffuse means the scarring is spreading. We’ll find out in just a little bit. So far, I’ve defined two not necessarily medical words. We know that renal and kidney are the same, so we’re left with ‘parenchymal.’ It does remind me of the term for an elephant, but I kind of doubt that’s the case here. We’re really working the dictionary today:

“relating to or affecting the functional tissue of an organ”

Oh, that’s where the scarring comes in. Let’s see if we can figure out exactly how, though.

Healthmatch, according to their website, is:

“… a diverse team of doctors, engineers, scientists and people dedicated to challenging the status quo of medical research.

We are united by a passion to deliver better healthcare options, for all, regardless of location, background or means. This means access to trials and the revolutionary treatments that come from them.”

 It tells us:

“The kidneys comprise various components and structures that contribute to their bodily function. Within the kidney’s anatomy is the parenchyma, which is responsible primarily for the filtration of blood that passes through the kidneys and the excretion of waste in the form of urine.”

So, the scarring interferes with the blood filtration and excretion of waste, two of the most primary of the kidney’s many functions. Let’s see if can figure out how this scarring happens. I lucked on to Nicklaus Children’s Hospital’s information about the parenchyma:

“The renal parenchyma is the functional part of the kidney that includes the renal cortex (the outermost part of the kidney) and the renal medulla.

• The renal cortex contains the approximately 1 million nephrons (these have glomeruli which are the primary filterer of blood passing through the kidney, and renal tubules which modify the fluid to produce the appropriate amount/content of urine).
• The renal medulla consists primarily of tubules/ducts which are the beginning of the collecting system that allows the urine to flow onwards to being excreted.

Renal parenchyma disease describes medical conditions which damage these parts of the kidney.”

Now that I know what this condition or disease is, I’d like to know what causes it. I,Cliniq, the Virtual Hospital to the rescue!

“The causes of the renal parenchymal disease include:

• High blood pressure.
• Kidney stones.
• Diabetes.
• Genetic conditions such as polycystic kidney disease.
• Bacterial and viral infections.
• Family history of the disease.
• Autoimmune diseases such as lupus nephritis.
• Drug-related and others.”

We don’t know what the ‘others’ are, but I was surprised to see two non-kidney causes in this list: ‘bacterial and viral infections’ and ‘drug- related’. This is starting to sound like something you want to deal with a.s.a.p. But how?

According to Healthmatch:

“Doctors offer no single common solution or plan for the management and treatment of renal parenchymal disease. Each approach to helping an individual with renal parenchyma disease will take into account their condition, what symptoms they are experiencing, and the severity of the damage to the renal parenchyma.

The reality is that there is no cure for renal parenchyma disease but rather medical management of the symptoms as best as possible to try and prevent further deterioration and damage to the kidneys and your overall health.”

No cure? We’re living with chronic kidney disease which has no cure, but we can slow down its progress and do our best to keep it from being dangerous. Is renal parenchyma disease dangerous? Is CKD dangerous?

The National Kidney Foundation has a revelation for us:

“Renal parenchymal disease means the same thing as chronic kidney disease (CKD).  It is just another way of saying CKD.”

Everything you’ve learned about CKD is true about renal parenchymal disease bilateral, too. You can call me Gail, Mom, or Bubby, but I’m still the same person. You can call this disease renal parenchymal disease bilateral or CKD, but it’s still the same disease.

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!

Curiouser and Curiouser [as Alice said]

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

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

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

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

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

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

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

Photo by Luna Lovegood on Pexels.com

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

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

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

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

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

“nervousness

• agitation
• anxiety
• sleep problems (insomnia)
• stomach pain
• loss of appetite
• weight loss
• nausea
• vomiting
• dizziness
• palpitations
• headache
• vision problems
• increased heart rate
• increased blood pressure
• sweating
• skin rash
• psychosis, and
• numbness
• tingling

or

• cold feeling in your hands or feet.”

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

Recovery Village was a lot more direct:

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

Some of the symptoms of rhabdomyolysis include:

• Tenderness
• Pain
• Spasms
• Stiffness
• Muscle cramps

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

We Know It Does, But How?

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

Let me first remind you that CKD is: 

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

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

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

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

Their latest definition of CKD is: 

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

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

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

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

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

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

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

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

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

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

Kidney Care UK offers us even more information: 

“Diabetes can affect your kidneys in two main ways: 

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

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

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

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

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

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

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

“Type 1 Diabetes 

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

Type 2 Diabetes 

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

Gestational Diabetes (Diabetes in Pregnancy) 

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

Prediabetes 

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

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

Time for me to take my insulin. 

Until next week, 

Keep living your life! 

I’d Never Really Thought About It

Last week, we celebrated World Kidney Day. Have you seen Otsuka Pharmaceutical Companies’ World Kidney Day post featuring Steve Winfree, several others, and me? We all shared messages about dealing with kidney disease for other kidney disease patients. 

While World Kidney Day has passed, it’s still National Kidney Month. During this time, I decided to look for topics I hadn’t thought about before. I researched several only to find they had nothing to do with the kidneys. Then I hit upon magnesium. Bingo! 

Since my cancer dance, I’ve been taking 400 mg. twice a day for healing. [Chemo is really hard on the body.] I had no idea I was helping my kidneys, too. Of course, I had to know how this worked and then share it with you. 

Let’s start with what magnesium is. I liked the Kidney Coach’s down to earth explanation: 

“Magnesium is one of the key minerals that the body needs to stay healthy, in fact it is needed for more than 300 biochemical reactions in the body. Approximately 60% of the body’s magnesium is present in bone, 20% in muscle and another 20% in soft tissue and the liver. Less than 1% of total magnesium is in blood serum and our body works hard to try and keep these levels under tight control.”   

I’m not certain, but I’m guessing it’s the blood serum’s 1% of magnesium that concerns us. But let’s find out for sure. Here’s what WebMD had to say: 

“Magnesium is a mineral that is important for normal bone structure in the body. People get magnesium from their diet, but sometimes magnesium supplements are needed if magnesium levels are too low. Low magnesium levels in the body have been linked to diseases such as osteoporosis, high blood pressure, clogged arteries, hereditary heart disease, diabetes, and stroke.” 

Hmm, while that doesn’t answer the implied question, it does bring up other issues. Did you catch ‘high blood pressure’ and ‘diabetes’ in the above quote? Those are the two leading causes of chronic kidney disease. 

Maybe Harvard Health Publishing, Harvard Medical School can help us out here: 

“Magnesium helps regulate hundreds of body systems, including blood pressure, blood sugar, and muscle and nerve function. We need magnesium to help blood vessels relax, and for energy production, and bone development. Just like potassium, too much magnesium can be lost in urine due to diuretic use, leading to low magnesium levels.” 

Think about it: relaxed blood vessels allow the blood to flow through your body more easily, thereby avoiding blood pressure build up or high blood pressure.  Unregulated blood sugar leads to diabetes. It’s starting to make sense, isn’t it? 

 Jumping back to the blood serum, look what I found at ANA Journals: 

“… in patients with CKD, we observed that higher serum magnesium is associated with lower SBP and lower DBP at baseline in the CRIC Study. Higher serum magnesium is associated with a lower risk of hypertension according to multiple definitions. Furthermore, regarding hard clinical outcomes, higher serum magnesium is associated with a significantly lower risk of CKD progression during long-term follow-up ….” 

I needed some of that alphabet soup defined, so maybe you do, too. 

SBP: systolic BP [top number – blood pressure when the heart is beating] 

DBP: diastolic BP [bottom number – blood pressure when heart is at rest] 

CRIC: Chronic Renal Insufficiency Cohort [conducts studies to further the health of those with CKD] 

Well, what happens if you have too much magnesium in your body? MedicalNewsToday was able to help us out with this question: 

“Most cases of hypermagnesemia occur in people who have kidney failure. Hypermagnesemia occurs because the process that keeps the levels of magnesium in the body at normal levels does not work properly in people with kidney dysfunction and end-stage liver disease. 

When the kidneys do not work properly, they are unable to get rid of excess magnesium, and this makes the person more susceptible to a build-up of the mineral in the blood. 

Some treatments for chronic kidney disease, including proton pump inhibitors, can increase the risk of hypermagnesemia. Malnourishment and alcoholism are additional risk factors in people with chronic kidney disease.” 

Doesn’t sound good, especially since we have CKD. We’d better find out what the symptoms are. According to Mercy Health: 

“Hypermagnesemia has serious symptoms. They can cause problems with your heart and difficulty breathing. Some people experience signs of shock or go into a coma. Other symptoms of hypermagnesemia include: 

• Very low blood pressure 
• Nausea and vomiting 
• Headaches …. 

A normal level of magnesium in the blood is between 1.7 and 2.3 milligrams per deciliter.” 

As best I can figure out [Remember, I’m not a doctor.], the treatment is dialysis or diuretics. However, these each have further treatment necessary. 

Let’s not panic now. Remember that this is pretty rare. Hypomagnesemia? Not so much. The Egyptian Journal of Internal Medicine makes that clear: 

“… hypomagnesemia is a common electrolyte disorder in non-dialysis CKD population and is independently associated with proteinuria. Hypomagnesemia is a risk factor for inflammation, anemia, and hyperparathyroidism in pre-dialysis CKD population.”   

I went to my trusted source, the Cleveland Clinic, for the symptoms of low magnesium: 

“Tremors. 

Tetany (muscle spasms, muscle cramps and/or numbness in your hands and feet). 

Abnormal eye movements (nystagmus). 

Fatigue and weakness.” 

Now, of course, we need to know how it’s treated. I read several studies to find this one simple treatment on National Center for Biotechnology’s site: 

“Mg [magnesium] supplementation was safe and well tolerated with no adverse events related to Mg treatment and no incidences of symptomatic hypermagnesemia.”   

In other words, OTC magnesium pills. 

This has definitely been one of the harder blogs I’ve written. I kept having to dig and dig for information. Let’s not take anything for granted. Do speak with your nephrologist if you have questions or think you may have low or high magnesium. All you’ll need to be sure is a blood test. 

Until next week, 

Keep living your life!  

The Valsartan/Hyperkalemia Connection

My wonderful nephrologist and I had a Telemedicine appointment this past week. Last time we had one, six months ago, he prescribed Valsartan since my usual blood pressure was 139/78. That was too high.  

I had forgotten to record my blood pressure for a few days prior to this appointment. I most often did that to give him an average, so I quickly took it when I awoke that day. Let’s remember that both CKD brain fog and chemo brain took their toll on me. 

It was 158/69. Okay, I figured, I’ll take the drug and see what happens with my blood pressure before the call. I was astounded. After taking the Valsartan, my blood pressure went down to 129/67. It had been less than three hours. 

Well, you’ve probably figured out by now that Valsartan is a blood pressure drug. Let’s see what GoodRX has to say about this drug.    

“Diovan (valsartan) is a medication used to lower blood pressure. It can also help protect the kidneys, so it is a good first-line option for people with both hypertension and diabetes.” 

Diovan is the brand name. Valsartan is the generic name. I have hypertension, diabetes, and chronic kidney disease, so I won on all three [some victory, huh?]. Of course, now I wanted to know how it worked. I went straight to WebMD. 

“Valsartan belongs to a class of drugs called angiotensin receptor blockers (ARBs). It works by relaxing blood vessels so that blood can flow more easily. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems.” 

A little more on ARBs, I thought. The Mayo Clinic offered this information: 

“Angiotensin is a chemical in your body that narrows your blood vessels. This narrowing can increase your blood pressure and force your heart to work harder. 

Angiotensin II receptor blockers block the action of angiotensin II. As a result, the medication allows your veins and arteries to widen (dilate).” 

Now I understand why this works for hypertension, kidney disease, diabetes, and even heart failure. 

During this appointment, my nephrologist reminded me to watch my potassium since I was taking valsartan. Huh? I didn’t remember him telling me about the valsartan/potassium connection during our last appointment. Was it brain fog and chemo brain at work again? 

Apparently, this is important. Healthline even has what they actually call important warnings: 

“Low blood pressure warning: This drug can cause your blood pressure to drop too low. This can cause dizziness, lightheadedness, and headache. You may have a higher risk if you’re dehydrated or take high doses of diuretics (water pills). 

High blood potassium warning: This drug can increase your potassium levels. Your risk may be higher if you have kidney problems or heart failure. Your doctor may check your potassium levels with blood tests while you’re taking this drug.” 

Do you remember what potassium is? No problem if you don’t. Medline Plus, will remind us. 

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

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

My nephrologist – and every other doctor I see – does check my electrolyte levels. As mentioned by Medline Plus, potassium is an electrolyte. High potassium is called hyperkalemia. The National Kidney Foundation tells us the most common causes of hyperkalemia are: 

“Kidney Disease. Hyperkalemia can happen if your kidneys do not work well. It is the job of the kidneys to balance the amount of potassium taken in with the amount lost in urine. Potassium is taken in through the foods you eat and the liquids you drink. It is filtered by the kidneys and lost through the urine. In the early stages of kidney disease, the kidneys can often make up for high potassium. But as kidney function gets worse, they may not be able to remove enough potassium from your body. Advanced kidney disease is a common cause of hyperkalemia. 

A diet high in potassium. Eating too much food that is high in potassium can also cause hyperkalemia, especially in people with advanced kidney disease. Foods such as cantaloupe, honeydew melon, orange juice, and bananas are high in potassium. [Noooooo, I love these fruits.]  

Drugs that prevent the kidneys from losing enough potassium. Some drugs can keep your kidneys from removing enough potassium. This can cause your potassium levels to rise. [like Valsartan]” 

This does not paint a pretty picture. I need Valsartan to control my blood pressure, but it may cause damage to my kidneys and my heart. I can avoid the foods that have high potassium even though they’re my favorites. I get my electrolytes tested often enough to feel like a pin cushion. Make no mistake: hyperkalemia can be life-threatening. 

There’s no avoiding that everything is our bodies is connected. To help our hearts and kidneys, we may actually be doing the opposite. That’s why I’m glad I’m not a doctor and see specialists to make sure everything is balanced and safe. Of course, I asked questions until I understood the answers, but I trust my doctors. My life is too important for a layperson [me] to make decisions about balancing the actions of my organs. 

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! 

Oh, Those Dimples

 Most often when you see a doctor, he or she will press your leg with one of his fingers, look at the indent made that quickly pops back to normal, and murmur, “Hmmm.” That’s what my rheumatologist did last time I saw her, only she didn’t say, “Hmmm.” She said, “Look at that, Gail.” Uh-oh. 

I looked… and saw the indent still there. I know what that meant: edema. My favorite dictionary since high school almost 50 years ago, Merriam-Webster, defines edema for us: 

“an abnormal infiltration and excess accumulation of serous fluid in connective tissue or in a serous cavity 

 called also dropsy” 

So that’s what dropsy is. I’d always wondered.  

Back to the matter at hand. What does edema have to do with chronic kidney disease – if anything. 

Comprehensive Vascular Care, a practice in Michigan, offered some facts new to me: 

“It’s also linked to two other major diseases: 1 in 3 adults with diabetes and 1 in 5 adults with high blood pressure may also have kidney disease. All three conditions can lead to edema (swelling) in the legs.” 

I realized when I read this that my endocrinologist, primary care doctor, and nephrologist also always checked for edema. How did I not know the connection between their specialties and edema? After having written the blog for over a decade, it occurs to me that you may not know, either. Let’s find out together. 

We know the simple test of pressing a finger into your leg to determine if edema is present. MediceNet tells us there are other tests which may be used to figure out if you have edema: 

“X-ray 

Electrocardiogram (EKG) 

Blood tests 

Urinalysis (urine test)” 

Let’s say it is found that you have edema. Sure, it may be associated with your ckd, high blood pressure, or/and diabetes, but how? 

“You probably know your kidneys help eliminate fluids from your body through urination. But, kidneys also filter fluids, removing excess waste products from your blood. If your kidneys don’t work properly, fluid can get trapped in your body. Some waste products, such as sodium, can cause fluid to get trapped in your soft tissues and cause swelling under your skin.  

Kidney disease can cause swelling — or edema — anywhere in the body, but it’s most common in the feet, andkles [sic], and lower legs — all areas affected most by gravity. Some people also have swelling in their hands or face.  

If there’s a lot of swelling, you might notice that when you press the swollen skin with your finger, the area stays dimpled or ‘pitted’ even after you remove your finger. This is sometimes called pitting edema, and it’s typically associated with more severe edema.  

If your tissues continue to swell, this will put more pressure on your skin, and your skin may look shiny or taut in the affected areas. Your skin may also be more prone to cuts and sores because it’s stretched out. Some people develop skin ulcers, which are deep sores that take a long time to heal.” 

Thanks to Houston Kidney Specialist Center for the above information. 

By the way, let’s not forget that high blood pressure and diabetes are the two leading causes of ckd. 

Oh, the dimpling is more severe than I’d thought. Let’s see what else might cause edema. Nephrology Specialists of Tulsa helps out here: 

“Edema has many causes, some much more serious than others. It can result from standing or walking in excessive heat; sitting for prolonged periods; eating too much salt; getting sunburned; or being premenstrual or pregnant. More serious causes of edema include the following: 

Lymph-node problems (particularly after a mastectomy) 

Certain medications 

Venous insufficiency 

Congestive heart failure 

Cirrhosis 

Kidney disease 

Chronic bronchitis or emphysema 

Infection, injury or allergic reaction 

A lack of protein in the diet can also cause edema” 

While that’s interesting, I still want to know what it is in the kidneys specifically that causes edema. 

I found one answer on the Mayo Clinic’s site: 

“Nephrotic syndrome is a kidney disorder that causes your body to pass too much protein in your urine. 

Nephrotic syndrome is usually caused by damage to the clusters of small blood vessels in your kidneys that filter waste and excess water from your blood. The condition causes swelling, particularly in your feet and ankles, and increases the risk of other health problems.” 

Johns Hopkins Medical had more of the detail I was looking for: 

“Nephrotic syndrome results from damage to the kidneys’ glomeruli. These are the tiny blood vessels that filter waste and excess water from the blood and send them to the bladder as urine. 

Your glomeruli keep protein in the body. When they are damaged, protein leaks into the urine. Healthy kidneys allow less than 1 gram of protein to spill into the urine in a day. In nephrotic syndrome, the glomeruli let 3 grams or more of protein to leak into the urine during a 24-hour period.  

Nephrotic syndrome may happen with other health problems, such as kidney disease caused by diabetes and immune disorders. It can also develop after damage from viral infections. 

The cause of nephrotic syndrome is not always known.” 

So, what do we do about edema? According to National Health Service of the UK: 

“You may be advised to reduce your daily salt and fluid intake, including fluids in food such as soups and yoghurts, to help reduce the swelling. 

In some cases you may also be given diuretics (tablets to help you pee more), such as furosemide. 

Side effects of diuretics can include dehydration and reduced levels of sodium and potassium in the blood.” 

Okay, that’s just a bit confusing since as ckd patients who are not on dialysis, we are usually advised to drink plenty of water. 

I just pressed my thumb into my leg. No dimple! Why don’t you try it on yourself? 

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! 

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! 

Life Long Learning

 The American Association of Kidney Patients’ 47^th Annual National Meeting concluded last Friday. The first time I attended, before cancer and Covid, it was in person. I wondered how this year’s online meeting would go. Would I learn anything new? Could I interact with others? Would there be people there I already knew? 

The answer to each of these questions is yes. What I think would most interest you is what I learned. I’ve heard of PCORI years ago when I first started working as a pharmaceutical patient advisor. It was mentioned to me just before a session started and not brought up again during the meeting. Since I was there to offer my suggestions, not learn about any other organizations, I didn’t pursue it. 

PCORI is an organization. The acronym stands for Patient-Centered Outcomes Research Institute. It’s also fairly new since it was created in 2010 [two years after I was diagnosed with CKD]. I found the following on their website and thought it clearly explains who they are: 

“PCORI’S STRATEGIC PLAN Highlights for Patients, Caregivers, and Patient Advocates 

PCORI’S STRATEGIC PLAN  

Generating Evidence to Achieve More Efficient, Effective, and Equitable Health Care and Improve Health for All  

Strategic Plan builds on our past work and outlines a bold approach to addressing the challenges that a changing health and healthcare system poses to the people we serve.  

Our National Priorities for Health focus on improving health outcomes and patient care through research and other programs. Their connected nature will allow PCORI to continue to fund research and other programs to improve patient care and health outcomes.  

NATIONAL PRIORITIES FOR HEALTH  

• Increase Evidence for Existing Interventions and Emerging Innovations in Health  
• Enhance Infrastructure to Accelerate Patient Centered Outcomes Research  
• Advance the Science of Dissemination, Implementation, and Health Communication  
• Achieve Health Equity  
• Accelerate Progress Toward an Integrated Learning Health System  

A HOLISTIC APPROACH  

The core parts work together to drive our mission. PCORI will track and measure our efforts so we can make improvements along the way. 

Promoting Engagement 

Creating a culture that is inclusive through meaningful engagement with patients, caregivers, and other stakeholders across all aspects of research. 

Funding Patient-Centered CER 

Funding comparative clinical effectiveness research, CER, that puts patients at the center. This means funding research that answers questions important to patients and others. Our Research Agenda, made up of six broad areas of research, provides the framework for this effort. 

Strengthening Key Infrastructure 

Advancing the science and methods of CER and developing the workforce, data and tools that can make research and delivery of care more patient centric. 

Sharing and Using Research Findings 

Investing in the science and practice of helping to make sure results from our PCORI-funded studies are easy to find and are more widely used to make better healthcare choices.   

ENHANCED FOCUS ON EQUITY 

Health equity is woven through our National Priorities for Health and our Research Agenda. This expands on our commitment to health equity in all that we do and includes: 

• Sharpening our focus on generating evidence with a direct impact on improving patient centered care, health outcomes, and a person’s overall health status.  

• Partnering with the communities we serve and that make our work possible.  

PRIORITIZING MATERNAL HEALTH AND INTELLECTUAL AND DEVELOPMENTAL DISABILITIES  

We are committed to research focused on improving health outcomes for:  

• Pregnant people, mainly at high-risk periods before, during, and after childbirth.  

• People with intellectual and developmental disabilities, and those who care for them as infants and into adulthood.” 

I thought this whole concept was spectacular, but what did it have to do with chronic kidney disease? Or any kind of kidney disease for that matter. 

Photo by Andrea Piacquadio on Pexels.com

Hmmm, it seems they conducted a study of depression while on dialysis which contrasted two different anti-depression medications:  

“A PCORI-funded study found that CBT improved depression about as much as sertraline for patients on dialysis with depression. The research team found improvements across all patients in sleep, appetite, mood, energy level, and ability to focus. At the end of the study, about a third of all patients no longer had symptoms of depression. 

Compared with patients using CBT, patients taking sertraline had slightly more improvement in symptoms of depression. But patients taking sertraline also had side effects more often than patients using CBT.”  

PCORI also answered the following question with research: 

“Does an Online Decision Aid Help People with Advanced Chronic Kidney Disease Choose between Two Treatment Options? [hemodialysis and peritoneal dialysis] 

The decision aid increased 

• What patients knew about CKD and treatment options 
• How sure patients were about what was most important to them in choosing between treatments 
• How sure patients felt about which treatment they would choose 

The decision aid didn’t change patients’ self-confidence in their ability to decide which treatment would be best for them.” 

In a still ongoing study, “the research team is comparing ways to monitor and treat high blood pressure in children with CKD.” 

PCORI also deals with diabetes, the number one cause of CKD. This is the conclusion of the study: 

 “Comparing Three Methods to Help Patients Manage Type 2 Diabetes 

Our project demonstrated that C4L and community health workers, alone and in combination, improve self-management skills and control of DM [Diabetes Meliltus] in an inner-city Medicaid population to a similar extent. Both C4L and CHWs integrated into a medical team activate and sustain patient engagement in DM care, promoting achievement of wellness and clinical goals, reducing HbA1c, and lowering health care utilization. CHWs support patients with DM by addressing both medical needs and the social determinants of chronic disease. In addition, CHWs may enhance patient engagement with mHealth by acting as digital navigators. In the future, a potential combination strategy may start by providing patients with a CHW and transitioning to mHealth support, with reintroduction of CHWs as needed to maintain patient healthy behaviors.” 

If you’re anything like me, you’ll need more information about C4L from the same source: 

“The key features of the C4L system can be accessed via secure text messaging and can be used on any cell phone handset. C4L features include the following: (1) reminders to check glucose and Blood pressure; (2) recording and transmission of physiologic parameters (glucose, BP) with alarms set by the health care team for specified critical values that are sent to the patient; (3) reminders to take medications; (4) tracking of lifestyle and behavioral goals using selected questionnaires; (5) summary reports for the patient and health care provider; and (6) educational and lifestyle modification tips to educate and support self-care skills.” 

All I have to say is, “Many thanks to you, PCORI.” 

Until next week, 

Keep living your life! 

Move It (Please)

Lately, everywhere I look I see some information about exercise. That’s probably because I’ve had enough of hiding from it. I didn’t feel like I had much control over my pancreatic cancer, but I did have control over whether I exercised or not. So, I didn’t. Bad move on my part. It’s taken me almost three years to understand that I wasn’t doing myself any favors by avoiding exercise. 

So first, I tried tap dancing. I’d always wanted to learn how to do that. Gregory Hines was my hero at one time just because he was such a marvelous tap dancer. That didn’t work out too well. I have osteoarthritis in my feet, knees, and hips. My rheumatologist strongly suggested I NOT tap dance. Oh, well. 

Then I thought I’d go back to walking. I used to love to take my dog on long, wandering walks. Unfortunately, Sweet Ms. Bella succumbed to her own cancer. A few years later, my big, fluffy, white dog, Shiloh, came to live with us. One thing this 70 lb. dog does not do is walk on a leash. That didn’t really matter as much as I’d thought it did because I got older and simply could no longer deal with the Arizona heat. I wonder if the chemotherapy had anything to do with that. 

My third attempt at exercise was with an online app. This one was sort of a chair yoga. I hadn’t remembered about the bone on bone in my neck or the neuropathy in my hands and feet. Ouch! Not to worry, I’ll find something; it’s just a matter of trying.  

Meanwhile, let’s take a look at why it’s so important for us to exercise. It’s important for everyone, but I mean chronic kidney disease patients and diabetes specifically.  

“This is something I explored in my first CKD book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: 

‘I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglycerides. The greater your triglycerides, the greater the risk of increasing your creatinine. There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising…. 

Keeping it simple, basically, there’s a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensify your activity…. 

What I didn’t know at the time is that your body becomes accustomed to a certain kind of exercise and then it isn’t as effective anymore….’” 

I revisited the topic of exercise towards the end of last year and found new information, which makes sense since more than 10 years has passed since the publication of my first CKD book: 

“As for lowering both parts of your blood pressure, that’s good news too since high blood pressure is the second most common cause of CKD …. By the way, systolic is the top number which measures your heart rate when blood is being pumped to all parts of your body. Diastolic is the bottom number which measure your heart rate when your heart is at rest.  

Lowering your BMI is also a boon. Excess weight may lead to diabetes which, in turn, could lead to CKD. According to the National Center Biotechnology Information [NCBI],  

‘A high body mass index is one of the strongest risk factors for new-onset CKD. In individuals affected by obesity, a compensatory hyperfiltration occurs to meet the heightened metabolic demands of the increased body weight. The increase in intraglomerular pressure can damage the kidneys and raise the risk of developing CKD in the long term.’”    

And then, there’s the latest information about exercise from the National Kidney Foundation:  

“How does exercise benefit me? 

With exercise, it becomes easier to get around, do your necessary tasks and still have some energy left over for other activities you enjoy. 

In addition to increased energy, other benefits from exercise may include: 

Improved muscle physical functioning 

Better blood pressure control 

Improved muscle strength 

Lowered level of blood fats (cholesterol and triglycerides) 

Better sleep 

Better control of body weight …. 

Type of Exercise 

Choose continuous activity such as walking, swimming, bicycling (indoors or out), skiing, aerobic dancing or any other activities in which you need to move large muscle groups continuously. 

Low-level strengthening exercises may also be beneficial as part of your program. Design your program to use low weights and high repetitions, and avoid heavy lifting. 

How Long to Exercise 

Photo by Andrea Piacquadio on Pexels.com

Work toward 30 minutes a session. You should build up gradually to this level. 

There is nothing magical about 30 minutes. If you feel like walking 45 to 60 minutes, go ahead. Just be sure to follow the advice listed under “When should I stop exercising?” in this brochure. 

How Often to Exercise 

Exercise at least three days a week. These should be non-consecutive days, for example, Monday, Wednesday and Friday. Three days a week is the minimum requirement to achieve the benefits of your exercise. 

How Hard to Work While Exercising  

This is the most difficult to talk about without knowing your own exercise capacity. Usually, the following ideas are helpful:  

Your breathing should not be so hard that you cannot talk with someone exercising with you. (Try to get an exercise partner such as a family member or a friend.) You should feel completely normal within one hour after exercising. (If not, slow down next time.)  

You should not feel so much muscle soreness that it keeps you from exercising the next session.  

The intensity should be a “comfortable push” level.  

Start out slowly each session to warm up, then pick up your pace, then slow down again when you are about to finish.  

The most important thing is to start slowly and progress gradually, allowing your body to adapt to the increased levels of activity.” 

There’s more on their website.  

No excuses now. Let’s go exercise. 

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 3

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

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

Thank you to WebMd for this explanation: 

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

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

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

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

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

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

The harm can come quickly. And over time. 

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

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

Wow, you can actually visualize this. 

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

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

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

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

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

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

Table salt 

Cured meats, such as ham, bacon, and sausage 

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

Pre-packaged frozen dinners 

Ramen noodles, boxed noodles, and potato and rice mixes 

Canned soups and pasta sauce 

Pickled foods, such as olives, pickles, and sauerkraut 

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

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

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

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

Until next week, 

Keep living your life! 

How Pets Help

We’ve all heard that pets relax us. My family was a cat family until we moved into a house. We had so many dogs in Staten Island while the girls were growing up that I’m not sure I can remember them all. Here in Arizona, it’s only been my Sweet Ms. Bella – who instantly loved Bear – and Shiloh, our present big, fluffy, white dog.

Bella

I’m particularly interested in how our pets can help us with our chronic kidney disease. This all started when I wondered out loud what I should write about for this week’s blog. Bear called out, “Pets!” He was being silly, but I liked the idea. Let’s see if we can figure this out.

Here’s what the CDC has to say about having pets:

“There are many health benefits of owning a pet. They can increase opportunities to exercise, get outside, and socialize. Regular walking or playing with pets can decrease blood pressure, cholesterol levels, and triglyceride levels.  Pets can help manage loneliness and depression by giving us companionship. Most households in the United States have at least one pet.

Studies have shown that the bond between people and their pets is linked to several health benefits, including:

• Decreased blood pressure, cholesterol levels, triglyceride levels, feelings of loneliness, anxiety, and symptoms of PTSD.
• Increased opportunities for exercise and outdoor activities; better cognitive function in older adults; and more opportunities to socialize”

Now, let’s apply that to CKD patients. Hypertension, or high blood pressure, is the second most common cause of chronic kidney disease. I turned to the National Institute of Diabetes and Digestive and Kidney Diseases [NIDDK) to pinpoint exactly how hypertension affects your kidneys:

“High blood pressure can constrict and narrow the blood vessels, which eventually damages and weakens them throughout the body, including in the kidneys. The narrowing reduces blood flow.

If your kidneys’ blood vessels are damaged, they may no longer work properly. When this happens, the kidneys are not able to remove all wastes and extra fluid from your body. Extra fluid in the blood vessels can raise your blood pressure even more, creating a dangerous cycle, and cause more damage leading to kidney failure.”

Thank you, Shiloh, with helping to keep my blood vessels unconstricted.

What about high cholesterol levels? WebMD was able to help us out here:

“Cholesterol is a waxy substance. Your body makes it and uses it to build your cells. You also get it from many foods. But having too much cholesterol can lead to health problems….

High cholesterol can build up in arteries to increase your risk of a heart attack or stroke. It turns out that high cholesterol isn’t good for your kidneys either.”

Along with high cholesterol, high triglycerides are detrimental to your kidneys. These fats in your blood can lead to diabetes, which is the foremost cause of CKD. High triglycerides might also raise your creatinine level. You need to remember that you do need some triglyceride since they store unused calories. These are used by your body for energy. You just don’t want high triglycerides.

I had no idea my dogs and cats were helping me control my CKD. By the way, other pets can also help. It doesn’t have to be a dog or cat.

We know – fortunately or not – that exercise if important if you have CKD. This is something I explored in my first CKD book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglyceride s. The greater your triglycerides, the greater the risk of increasing your creatinine. There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising….

Keeping it simple, basically, there’s a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensify your activity….

What I didn’t know at the time is that your body becomes accustomed to a certain kind of exercise and then it isn’t as effective anymore.”

I can’t walk Shiloh since she ends up walking me, but we play. We run back and forth down the length of the long central hallway in the house. I’m certain you can figure out how to get some exercise playing with your pet if you, too, cannot walk him.

Shiloh

As an older adult, I was interested in the “better cognitive function in older adults” benefit of having a pet. As a CKD patient, I wondered if it would have any effect on CKD brain fog. The National Center For Biotechnology Information [NCBI) succinctly tells us via their work that not nothings been proven about this yet:

“Exercise interventions are likely to be beneficial based on biological plausibility and pilot trial data.”

Relaxation is also helpful if you have CKD. Stress needs to be avoided. Petting your pet or otherwise spending time with them is relaxing. Avoiding stress is one of the ways you could help delay the worsening of your chronic kidney disease.

I like to rub behind Shiloh’s ears. She loves it and it relaxes me. I also like to brush her. She leans into the brush, and I baby talk to her. Both of us benefit from this form of relaxation. Bear likes to rub her belly. Again, they both love it… and I’ll bet they’re both benefiting from this.

All on Amazon

Yes, I do think pets help in dealing with your CKD. Who couldn’t use lowered blood pressure, cholesterol, triglycerides, and a chance at extra stress relief? Do you have a pet? IF not, would you consider getting one after reading this blog?

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

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

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

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

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

This time my favorite dictionary came through: 

“the material that passes through the membrane in dialysis” 

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

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

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

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

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

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

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

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

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

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

MyHealth.Alberta.ca answers that question: 

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

Uremia and fluid overload can cause: 

you to feel weak and tired all the time 

shortness of breath 

high blood pressure between dialysis treatments 

blood pressure to go down or drop during dialysis 

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

higher risk for infection 

problems with bleeding 

poor appetite, nausea, and real weight loss 

inability to tolerate exercise 

a bitter taste in your mouth 

yellow skin 

itchy skin” 

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

There are two types of dialysis. WebMD defines them: 

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

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

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

“A DaVita spokesperson wrote: 

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

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

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

Rest assured. You are being well taken care of. 

Until next week, 

Keep living your life! 

It’s the Month of….

World Kidney Day was March 10^th this year. While I publicized it widely on social media, I didn’t blog about it because I have just about every year for the last 11 years or so. Just scroll to ‘World Kidney Day’ on the topics dropdown to the right of the blog and you can read last year’s blog about it. 

By now, we all know March is National Kidney Month as well as Women’s History Month. Did you know it’s also National Nutrition Month? National Day Calendar tells us there is much more being celebrated this month: 

“Asset Management Awareness Month 

Developmental Disabilities Awareness Month 

Endometriosis Awareness Month 

Irish-American Heritage Month 

Multiple Sclerosis Awareness Month 

National Athletic Training Month 

National Brain Injury Awareness Month 

National Breast Implant Awareness Month 

National Caffeine Awareness Month 

National Celery Month 

National Cerebral Palsy Awareness Month 

National Cheerleading Safety Month 

National Craft Month 

National Colorectal Cancer Awareness Month 

National Credit Education Month 

National Flour Month 

National Frozen Food Month 

National Kidney Month 

National Noodle Month 

National Nutrition Month 

National Peanut Month 

National Sauce Month 

National Trisomy Awareness Month 

National Umbrella Month 

National Women’s History Month 

National Social Work Month” 

I’ll admit I had to look up Trisomy. I figured it was three something since tri means three. The Medical Dictionary backed me up: 

“the presence of an additional (third) chromosome of one type in an otherwise diploid cell (2n +1).”   

Now, I’ll agree with you that some of these seem pretty silly, but I also think it’s no accident that National Kidney Month and National Nutrition Month are both in March. Wait, before I forget, you can also use the topic dropdown to read last year’s blog on National Women’s History Month. 

I haven’t written about the basics of chronic kidney disease treatment in a while, but nutrition is one of them. I’ll let the National Kidney Foundation explain about the first of the ‘3 Ps and 1 S’ as I called them in my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. 

“Protein 

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

The amount of protein you need is based on: 

your body size 

your kidney problem  

the amount of protein in your urine 

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

My first nephrologist limited me to 5 ounces of protein daily 13 years ago. That still hasn’t changed. 

What about that one S? I thought the National Kidney Fund would be helpful here and they were, as long as you remember sodium, the 1 S, is one of the two elements of table salt: 

“Salt makes you thirsty and can make your body retain fluid. Having more fluid in your body can raise your blood pressure. When you have high blood pressure, your kidneys must work harder to filter blood. Over time, this can lead to kidney damage. 

Too much fluid in your body also puts more strain on your heart, lowers your protein levels, and leads to difficulty breathing. Taking steps to limit excess fluid buildup, and thereby controlling blood pressure, is vital to improving your health. 

If you have high blood pressure, eating a low or no added salt diet can help to lower it. Increasing your daily physical activity and taking blood pressure medicines if prescribed by your doctor are other ways to manage your blood pressure. Taking steps to keep your blood pressure at a healthy level may help keep kidney disease from getting worse.” 

2 Ps to go. One of them is potassium. I went right to my old and trusted site WebMD for information: 

“Every time you eat a banana or a baked potato with the skin on (not just the tasty buttered insides), you’re getting potassium. This essential mineral keeps your muscles healthy and your heartbeat and blood pressure steady. 

If you have a heart or kidney condition, though, your doctor may recommend a low-potassium diet. Your kidneys are responsible for keeping a healthy amount of potassium in your body. If they’re not working right, you may get too much or too little. 

If you have too much potassium in your blood, it can cause cardiac arrest — when your heart suddenly stops beating. 

If you have too little potassium in your blood, it can cause an irregular heartbeat. Your muscles may also feel weak.” 

Hang on, here’s the last P – phosphorous. That’s the one element you usually don’t find on food labels. For CKD patients, that’s pretty annoying since you may have to keep track of all 3 Ps and 1S at your nephrologist’s or renal dietitian’s direction. Mayo Clinic, another trusted site I’ve been consulting for over a dozen years, explains: 

“Phosphorus is a mineral that’s found naturally in many foods and also added to many processed foods. When you eat foods that have phosphorus in them, most of the phosphorus goes into your blood. Healthy kidneys remove extra phosphorus from the blood. 

If your kidneys don’t work well, you can develop a high phosphorus level in your blood, putting you at greater risk of heart disease, weak bones, joint pain and even death …. 

How much phosphorus you need depends on your kidney function. If you have early-stage kidney disease or you’re on dialysis, you may need to limit phosphorus. Nearly every food contains some phosphorus, so this can be hard to do.” 

While National Nutrition Month is for everyone, we – as CKD patients – need to pay more than usual attention to our nutrition if we don’t want our chronic kidney disease to go spiraling out of control. Naturally, our diets need to be individualized based on the stage of our disease and diet is not all there is to slowing down the progression of the decline of your kidney function (the definition of CKD), but it’s a start. 

Until next week, 

Keep living your life!  

Black History Month and the Present

I’ll bet you thought I’d forgotten all about Black History Month. Not at all, dear readers, not at all. It’s just that since this is a yearly occurrence and I’ve been blogging about kidney disease for 14 years, it becomes harder and harder to uncover Black nephrologists I haven’t written about before. Of course, including current Black nephrologists changes the picture somewhat. This year, I turned to Blackamericanweb for some help and found it, 

“Dr. Velma Scantlebury [Gail here: sometimes she is referred to as Scantlebury-White.] is the first African American female transplant surgeon in America. She is currently the associate director of the Kidney Transplant Program at Christiana Care in Delaware. [Gail here again: actually, she retired last year.] With more than 200 live donor kidney transplants under her career, she holds extensive research credit in African American kidney donation led by Northwestern Medicine Transplantation Surgeon Dinee C. Simpson, MD, Dr. Scantlebury has stated that she refuses to retire until there are ten more Black women in transplant surgery in the United States. Currently there is only one other Black woman transplant surgeon.” 

And who is the other ‘Black woman transplant surgeon’? Could it be the Dinee C. Simpson mentioned above? I went to Northwestern Medicine’s site to find out. 

“The Northwestern Medicine African American Transplant Access Program (AATAP) … is committed to breaking down barriers to transplant care in the African American community through access to education, resources and world-class transplant care. Dr. Simpson, who is the first African American female transplant surgeon in Illinois, founded the program to address disparity in access to transplantation experienced by the Black community.” 

Nice, but two Black nephrologists do not a blog make. Thankfully, Black Health Matters came to the rescue: 

“Kirk Campbell, M.D. 

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

Olayiwola Ayodeji, M.D.  

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

Paul W. Crawford, M.D. 

A nephrology and hypertension specialist with a private practice in Chicago, Paul W. Crawford, M.D. has been practicing for more than 40 years. He is a graduate of Loyola University of Chicago/Stritch School of Medicine.    

Photo by William Fortunato on Pexels.com

Crystal Gadegbeku, M.D. 

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

Eddie Greene, M.D. 

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

Susanne Nicholas, M.D. 

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

Carmen Peralta, M.D. 

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

Neil Powe, M.D. 

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

Crystal Tyson, M.D. 

Located in Durham, North Carolina, Crystal Tyson, M.D., is a specialist in nephrology and renal medicine. “I enjoy building relationships with my patients and collaborating with them on how to best accomplish those goals with available therapies,” she says.  

As you can see, the Black community is currently represented in the field of nephrology. It might have been that the history of Black nephrologists was limited by not only race, but how new the field was. We need to remember that nephrology was not recognized as a specialty until the 1950s. 

However, Zippa.com: the Career Expert, had what I consider distressing news on their site. Last year, only 4.6% of nephrologists were Black, down from 5.21% in 2016. Could that be because Blacks were the lowest paid nephrologists? And why are they still the lowest paid nephrologists? I find this disturbing. Don’t you? 

Until next week, 

Keep living your life! 

The Big House (and the Little House)

Readers tell me the most interesting things. A comment on last week’s blog about street drugs led me to research chronic kidney disease in the incarcerated population. I presumed it was going to be a difficult search for material since it seemed somewhat esoteric to me. Was I ever wrong. My first inquiry brought up the following. 

Photo by Ron Lach on Pexels.com

Oh wait, first we need to make certain you know that jail and prison are two separate things. Let’s turn to the Merriam-Webster Dictionary. You didn’t expect any other, did you? 

“If you wish to avoid ambiguity in use you should use prison for serious crimes with longer sentences, and jail for less serious crimes, or for detention awaiting trial. And penitentiary, when referring to a hoosegow, often has the specific meaning of ‘a state or federal prison in the U.S.’” 

Incarceration usually refers to long term detention, in other words, prison.  

Okay, now we can turn the prison population. An article in The Clinical Journal of the American Society of Nephrology stated in no uncertain terms, 

“CKD affects 15% of US adults and is associated with higher morbidity and mortality. CKD disproportionately affects certain populations, including racial and ethnic minorities and individuals from disadvantaged socioeconomic backgrounds. These groups are also disproportionately affected by incarceration and barriers to accessing health services. Incarceration represents an opportunity to link marginalized individuals to CKD care. Despite a legal obligation to provide a community standard of care including the screening and treatment of individuals with CKD, there is little evidence to suggest systematic efforts are in place to address this prevalent, costly, and ultimately fatal condition.” 

Did that mean the prisoners with CKD weren’t treated? Or that they weren’t screened? And if so, why not? It couldn’t be that CKD was ignored and allowed to progress until prisoners died, could it? I was becoming more and more curious about this. Back to the internet. 

Medicare usually pays for dialysis. Here’s what Medicare has to say about medical coverage while you’re incarcerated. 

“If you had Medicare before your arrest, you will remain eligible for the program while you are incarcerated. However, Medicare generally will not pay for your medical care. Instead your correctional facility will provide and pay for your care. Once you are released, Medicare will resume coverage if you remained enrolled.” 

According to the Federal Bureau of Prisons, 

“The Bureau’s professional staff provides essential medical, dental, and mental health (psychiatric) services in a manner consistent with accepted community standards for a correctional environment. The Bureau uses licensed and credentialed health care providers in its ambulatory care units, which are supported by community consultants and specialists. For inmates with chronic or acute medical conditions, the Bureau operates several medical referral centers providing advanced care. 

Health promotion is emphasized through counseling provided during examinations, education about the effects of medications, infectious disease prevention and education, and chronic care clinics for conditions such as cardiovascular disease, diabetes, and hypertension. The Bureau promotes environmental health for staff and inmates alike through its emphasis on a clean-air environment and the maintenance of safe conditions in inmate living and work areas. The Bureau’s food service program emphasizes heart-healthy diets, nutrition education, and dietary counseling in conjunction with certain medical treatment.” 

While I found the protocols for dealing with hypertension and diabetes on this website – the two leading causes of CKD – I didn’t find any for dealing with kidney disease itself. 

So, I looked further and found myself reading an October 2020 article in Transplantation. 

“The US Constitution guarantees adequate medical care to all convicts… however, transplantation is considered ethically contentious…. The determination to authorize transplantation for an inmate is often made by the prison administration on a case-by-case basis. Nevertheless, the Organ Procurement and Transplantation Network’s ethics committee advises that ‘one’s status as a prisoner should not preclude them from consideration for a transplant….’ However, Organ Procurement and Transplantation Network acknowledges that other nonmedical factors may influence patient’s candidacy for transplant and delegates the listing decisions to the individual transplant programs…. Consequently, programs make listing decisions in the absence of uniform criteria and hesitate to evaluate and waitlist prisoners…. The possible reasons are logistic challenges in clinical care, security concerns, uncertainty regarding adherence and concern of loss of follow-up. Overcoming these challenges requires program’s personnel to be highly motivated to accept convicts for transplantation.” 

Well, what about jails? How do they deal with chronic conditions? I discovered a site called Health Affairs that explained, 

“In 2019, there were a total of 10.3 million jail admissions with an average daily census of 741,900 across the United States. With a mean stay of 26 days, care for chronic medical conditions can be interrupted, jeopardizing the health and well-being of the incarcerated individual. Additionally, one in four jailed individuals will be arrested again, and these periodic short stays in jail introduce chaos into ongoing medical care. This is particularly concerning because the incarcerated population has a higher prevalence of chronic conditions such as diabetes mellitus, hypertension, and asthma compared to the general population….” 

Looking at the other side of the coin, you should know that prisoners have the right to refuse medical treatment. I’ve been to numerous sites in writing today’s blog and each one of them talked about the inferior quality of medical care in jails and prisons. While some acknowledged that there has been improvement in recent years, prisoners still do not trust the medical care they’re offered. 

It’s clear there’s far more to this issue than I’ve disclosed. However, this is as far as I am willing to go. Since both jails and prisons are government institutions, there are many ifs, ands, and buts. To explore these would take an encyclopedia in my opinion. 

Meanwhile, Happy Valentine’s Day. You do know that the digital version of the SlowItDownCKD series can easily be an instant gift for your loved ones. It will demonstrate your caring and help them understand chronic kidney disease. Whether you order a book or not, I wish you all my love on this Valentine’s Day. 

Until next week, 

Keep living your life! 

The Hard Stuff

With marijuana being legalized in so many states and so much information about it more readily available, I started wondering what other drugs might do to chronic kidney disease patients. I don’t mean prescriptions, but substances like heroin or cocaine. So, I did what I always do: I researched it. I have a curious mind. 

Photo by Alena Shekhovtcova on Pexels.com

The National Kidney Foundation tells us in no uncertain terms, 

“Most street drugs, including heroin, cocaine and ecstasy can cause high blood pressure, stroke, heart failure and even death, in some cases from only one use. Cocaine, heroin and amphetamines also can cause kidney damage.” 

I wanted to know how they can do this and learned a new word in the process. This is from The Recovery Village, a rehabilitation center: 

“Essentially what happens with rhabdomyolysis is a breakdown of tissue during an overdose-related coma because the person has been not moving for an extended period. The muscles start to disintegrate and that produces chemicals, which then go into the bloodstream and set off other damaging reactions throughout the organs. This is one of the number one reasons for kidney failure. During this situation, heart damage and heart attack can also occur. 

Also, people who use heroin intravenously may be more likely to contract infections that can lead to kidney inflammation, and for people who inject heroin under the skin, there’s an increased chance of getting secondary amyloidosis. This is a buildup of protein in organs and tissues that can lead to kidney failure.” 

By the way, you’re right if you guess the new word is rhabdomyolysis. Amyloid may be another word you need defined since it’s helpful in understanding the definition of amyloidosis. That’s what the Merriam-Webster Dictionary is for: 

“a waxy translucent substance consisting primarily of protein that is deposited in some animal organs and tissues under abnormal conditions (such as Alzheimer’s disease)” 

Worser and worser, as I image Alice from Alice in Wonderland might say. But we’re not done yet, DrugAbuse.com explains why street drugs are even worse for us as CKD patients than we may have thought: 

“Drugs and alcohol are no exception when it comes to the renal filtration process; in fact, the majority of abused substances are excreted through the kidneys …. 

There are a few factors that influence the kidneys’ ability to expel drugs, such as…: 

The acidity of urine. 

The kidneys’ condition. 

Circulation through kidneys. 

Urine flow. 

Kidney functioning can be negatively impacted by….: 

Exposure to toxins. 

Aging. 

Hypertension. 

Diabetes. 

Persistent kidney infections. 

Nephrolithiasis (kidney stones). 

In some cases, if the kidneys are not functioning properly, the effects of a drug may be amplified and thus, the kidneys are more easily prone to toxicity from the substance…. This can be particularly dangerous for someone suffering from an addiction to drugs or alcohol who is often increasing their dose to counteract tolerance.” 

So, it’s not just using street drugs that’s dangerous for our kidneys. It’s also that the more you use street drugs, the more you need for the high you seek. That further damages your kidneys. 

In some instances, these street drugs can cause kidney disease in people who had normal kidneys before the use of street drugs. This is from the American Addiction Centers, 

“Drug abuse can also impact the functioning of the kidneys. If the kidneys are not functioning properly, the effects of drug use can be amplified, and this can lead to further issues with the kidneys. For instance, individuals who develop tolerance to alcohol or drugs often significantly increase the amount of the substances they use, and this can contribute to problems with toxicity and kidney functioning over time. 

Chronic abuse of drugs or alcohol can lead to severe kidney damage and even to kidney failure. Substance abuse may directly damage the kidneys or may indirectly damage them through some other process, such as increased body temperature or rhabdomyolysis (the breakdown of muscle tissue in the release of cells in the bloodstream).” 

Hmmm, that could mean that if you didn’t have CKD when you started using street drugs, you may develop it by using these street drugs. To make it worse, it’s not always CKD, which is a decline in your kidney function for at least three months. Street drugs can also cause Acute Kidney Injury [AKI], which is defined by MedScape as: 

“…, is commonly defined as an abrupt decline in renal function, clinically manifesting as a reversible acute increase in nitrogen waste products—measured by blood urea nitrogen (BUN) and serum creatinine levels—over the course of hours to weeks.” 

Hours to weeks. It doesn’t take long for street drugs to affect your kidneys in some cases.   

Another treatment center, Sunrise House Treatment Center has some interesting information about street drugs and what they do to our kidneys, 

“Some drugs of abuse can damage the kidneys more than others. Here are some substances that cause kidney damage or renal failure: 

…. Benzodiazepines: When abused, these psychiatric prescription medications can cause rhabdomyolysis, or the breakdown of muscles that damages the kidneys. 

Cocaine: This potent stimulant can lead to rhabdomyolysis, or the breakdown of muscle tissue that poisons the blood and eventually the kidneys. The drug is toxic to the kidneys in multiple other ways, usually involving blood circulation through the organs and how the kidneys are able to filter out toxins to convert to urine. People who abuse cocaine for a long time are much more likely to suffer kidney damage or renal failure than the general public. 

…. MDMA: This club drug can cause kidney failure from dehydration, chemical adulterants, and hyperthermia (overheating), leading to muscle breakdown. 

Methamphetamines: Crystal meth and other versions of methamphetamines break down muscles and release toxins into the system that the kidneys cannot filter properly. 

Opioids: Heroin is especially toxic to the kidneys, in part due to the adulterants found in this street drug. However, any opioid drug can cause damage to the kidneys through muscle breakdown. 

Synthetic marijuana: Kidney damage can occur rapidly due to toxins in any synthetic drug, but it can occur particularly quickly due to abuse of synthetic cannabinoids like K2 or Spice. These lab-created chemicals are similar in structure to cannabinoids like THC, but they do not have the same effects on the brain. Because they are made with artificial chemicals, there are many other molecules in them that can be very harmful to the body. Additionally, these unregulated drugs contain vastly different doses of the intoxicating substance, so dosing is nearly impossible, which can rapidly lead to overdose. Kidney failure is one consequence of overdosing on synthetic marijuana.” 

Notice it’s synthetic marijuana that can cause kidney damage. But I think I’ll continue to get my high from watching my grandson’s antics anyway. 

Until next week, 

Keep living your life!  

It’s Only Logical

 For the last two years I’ve been grappling with exercise. I know it’s necessary, but I don’t want to do it. I keep telling myself that I’ll get over it; it being my need for control ever since I had cancer. I couldn’t control that, but I could control whether or not I exercised. I know it’s more than a little bit ridiculous, but the emotions don’t always listen to logic. Over a decade ago I wrote my first chronic kidney disease book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. I included a chapter on exercise. Maybe that would help. I didn’t want to copy the entire chapter for today’s blog, so here you have what I consider the relevant parts. Maybe it’ll help you, too, if you’re having the same problem as I am. I know from reader comments that many of us are in the same exercise boat. Ready? Let’s start rowing. 

“I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine. There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising. 

I researched, researched, and researched again. Each explanation of what exercise does for the body was more complicated than the last one I read. Keeping it simple, basically, there’s a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensity your activity…. 

I’ve discovered articles that say you need to exercise every day, and those that say you need to take a day or two off each week.  Frankly, I’m at the point where I try for every day but remember the articles that say take a day or two off each week if I don’t get to make the time every day that week.  I don’t know if it’s a function of age or not, but sometimes the day slips away, and I haven’t exercised yet.   

Photo by MART PRODUCTION on Pexels.com

For me, planning is important.  For example, I’m going dancing tonight, [Update: Covid put an end to that.] so I know I don’t have to stop writing to exercise.  Yesterday, I did – so I figured that since I can’t sit still at the computer for more than two hours at a time, I’d use the exercise bike [Update: long gone in deference to my knees and hip] and watch a movie during my second computer break.  The day before, I had appointments left and right without too much time for myself, so I had my coffee in the morning then used a one mile walking tape.  I usually use a three mile tape, but knew time was going to be tight that day and figured one mile was better than no miles…. 

There are days when an arthritic hip prevents me from doing any full body exercise.  I make sure no one is watching, then I dance vigorously but only from the waist up.  If it’s summertime here, I can water walk without too much pain when the arthritis acts up. [Update: Covid ended that, too.] 

The point is that exercise is going to help you impede the progress of your CKD.  Learn to at least tolerate exercise, if you can’t learn to love it.”    

This was written over 11 years ago and seems a bit simplistic. Let’s see what newer information there is about exercise and ckd. BMC, a research publisher, included a 2019 study by BMC Nephrology which concluded: 

“…exercise therapy may be a potential strategy to improve eGFR, reduce SBP, DBP and BMI in non-dialysis CKD patients. Limited evidence from short-term studies suggests that exercise may reduce TG, but not Scr, TC, HDL or LDL.” 

Don’t worry. They also included definitions for the abbreviations: 

“SBP: Systolic blood pressure 

DBP: Diastolic blood pressure 

BMI: Body mass index 

TG: Triglyceride 

SCr: Serum creatinine 

TC: Total cholesterol 

HDL: High density lipoprotein 

LDL: Low density lipoprotein” 

This sounds suspiciously like the list of what exercise can do for anyone, not just ckd patients, except for one very important aspect: eGFR. That’s your estimated glomerular filtration rate. In other words, it’s the evaluator of your kidney health. The higher the function, the better your kidneys are working. 

My eGFR just tanked to 40, almost the lowest it’s ever been. It’s probably due to using two different kinds of insulin, but that’s a blog for another day. The point is that exercise became part of my daily routine as soon as I saw that blood test result. Enough of these emotive issues. Time to return to logic. 

As for lowering both parts of your blood pressure, that’s good news too since high blood pressure is the second most common cause of ckd here in the USA. By the way, systolic is the top number which measures your heart rate when blood is being pumped to all parts of your body. Diastolic is the bottom number which measure your heart rate when your heart is at rest. 

Lowering your BMI is also a boon. Excess weight may lead to diabetes which, in turn, could lead to ckd. According to the NCBI [National Center for Biotechnology Information], 

“A high body mass index is one of the strongest risk factors for new-onset CKD. In individuals affected by obesity, a compensatory hyperfiltration occurs to meet the heightened metabolic demands of the increased body weight. The increase in intraglomerular pressure can damage the kidneys and raise the risk of developing CKD in the long term.”   

Got it. Let’s both get off the computer and get moving. 

Until next week, 

Keep living your life! 

Are You Sure About That?

I just made a neurology appointment for my husband since he has Alzheimer’s. That got me to thinking. What about us? Are chronic kidney disease patients also in need of a neurologist? It may seem an odd question to you, but we are already aware of brain fog caused by ckd. That’s neurological. What else should we know about? 

Wait, I’m rushing again. How about a reminder of what brain fog is? HealthCentral was helpful here: 

Photo by SHVETS production on Pexels.com

“People with kidney disease sometimes describe themselves as feeling like they have ‘brain fog’—a nice-ish way of saying they are muddled in their thinking, have trouble concentrating, and keep forgetting things. These symptoms can have several kidney disease-related causes. For one, ‘low iron levels can lead to cognitive problems or dizziness because you have fewer red blood cells transporting oxygen to your brain,’ …. Confusion may also be a result of high toxin levels in your brain. Elevated protein levels, a hallmark of CKD, can affect brain function as well.” 

I’ve written about brain fog before, and it seems to be accepted by the ckd community. But what else is there that we don’t know in regard to our neurological health when we have ckd? 

verywellhealth has quite a bit of information about neuropathy and ckd:  

“Neuropathy is nerve damage that causes tingling, numbness, pain, and other abnormal nerve sensations in the peripheral nerves (i.e., those of the arms and legs). It can occur for several reasons. Uremic neuropathy is a type that affects patients with advanced kidney disease or end-stage kidney disease patients who are on dialysis…. 

Unfortunately, neuropathy is very common in those with kidney disease. It may be related to nutrient imbalances, aspects of dialysis, or common overlapping conditions. The nerve damage may be permanent and get worse over time…. 

People with advanced kidney disease or those on dialysis have a higher risk for uremic neuropathy…. 

The reason(s) for this are unclear, but it could be that: 

Nerves tend to degenerate in kidney failure. Deficiencies of essential nutrients like thiamine (vitamin B1) or an excess of zinc might contribute…. 

Other diseases common in dialysis patients, like hyperparathyroidism, may be to blame…. 

Certain kinds of neuropathy, like carpal tunnel syndrome, seem to occur more frequently in the arm with dialysis access. A drop in blood supply to the nerves in the hand might be a contributing factor…. 

An increase in pressure due to dialysis access can lead to excess fluid or blood in the surrounding tissues, which might compress a nerve…. 

High phosphorus levels may cause calcium phosphate deposits to form, which could contribute to neuropathy…. 

With objective testing, more than half of dialysis patients could have signs of a nerve problem…. Those who don’t get the minimum prescribed amount of dialysis have a higher risk of developing neuropathy….However, not everyone with neuropathy and kidney disease is on dialysis.” 

Now, we know that I developed neuropathy from having chemotherapy and others have developed neuropathy via their diabetes. Did you know about CKD neuropathy? I must admit that I didn’t. 

I feel compelled to take a moment to remind you that not every CKD patient ends up with these neurological effects and, should they develop one, it can be in varying degrees. For example, my neuropathy is not painful, nor does it curtail my activities, but it is evident. My buddy with neuropathy says she’s barely aware of hers.

 I was sorry to discover that stroke may be one of the neurological side effects of CKD. AHA Journal printed an abstract on June 3 of this year which explains the whys and wherefores of stroke if you have ckd: 

“The global health burden of chronic kidney disease is rapidly rising, and chronic kidney disease is an important risk factor for cerebro-vascular disease. Proposed underlying mechanisms for this relationship include shared traditional risk factors such as hypertension and dia-betes, uremia-related nontraditional risk factors, such as oxidative stress and abnormal calcium-phosphorus metabolism, and dialysis-specific factors such as cerebral hypoperfusion and changes in cardiac structure. Chronic kidney disease frequently complicates routine stroke risk prediction, diagnosis, management, and prevention. It is also associated with worse stroke severity, outcomes and a high burden of silent cerebrovascular disease, and vascular cognitive impairment.” 

I was wondering what else I hadn’t even thought of until I started researching the neurological aspects of ckd. I found this information on Medscape: 

 “Uremic encephalopathy is an organic brain disorder. It develops in patients with acute or chronic renal failure, usually when the estimated glomerular filtration rate (eGFR) falls and remains below 15 mL/min….  

Manifestations of this syndrome vary from mild symptoms (eg, lassitude, fatigue) to severe signs (eg, seizures, coma). Severity and progression depend on the rate of decline in renal function; thus, symptoms are usually worse in patients with acute kidney injury. Prompt identification of uremia as the cause of encephalopathy is essential because symptoms are read-ily reversible following initiation of dialysis….^“ 

Again, not every CKD patient will develop this, nor will all those that do have severe symptoms. The idea of the blog is to educate, not scare. Some of us are in a fragile mindset just from being diagnosed. I’ve been diagnosed for over 13 years and was unaware of everything I wrote about today with the exception of brain fog and neuropathy.  

One more before we end.  

“The incidence of uremic seizures with kidney failure is ∼10%. These seizures are often nonconvulsive and may mimic uremic encephalopathy. Recognition and management of such situations may be challenging for treating physicians who are non-neurologists,” according to PubMed. 

Be aware that ∼ means approximately equal to. Another way to look at this is that ∼90% of kidney failure patients don’t develop uremic seizures. 

While these ckd side effects are considered common, they don’t seem to be discussed very much. I know my nephrologist has only discussed the first two with me. I speak with CKD patients all the time and none of them has ever mentioned the others, either. Is it possible that these are not as common as researchers think they are? Keep in mind that I’m not a doctor nor a professional re-searcher and this is simply my opinion.  

Until next week, 

Keep living your life! 

It Never Made Me Laugh

What never made me laugh, you ask. Laughing gas. Well, let’s use its official name – nitrous oxide. If you think that’s odd, wait until you read this … your kidneys produce nitric oxide.  

Photo by Anna Shvets on Pexels.com

I think I’d better mention right out of the gate that, although both have nitrogen, they are not the same. DifferenceBetween.com explains: 

“Nitric oxide is the molecule with the chemical formula NO, and the chemical formula of nitrous oxide is N2O. Therefore, by looking at the formula we can say that the nitric oxide has only one nitrogen atom and nitrous oxide has two nitrogen atoms.” 

So, we are really not discussing laughing gas anymore [although it made for a good introduction]. We’ll be dealing with nitric oxide. 

According to Nature Views Nephrology: 

“Nitric oxide and other bioactive nitrogen species have pivotal roles in multiple physiological functions, including modulation of the kidney, cardiovascular and metabolic systems; in the kidney, nitric oxide has a crucial role in autoregulation and modulation of tubular transport…. 

Reduced nitric oxide bioactivity has been associated with ageing and kidney, cardiovascular and metabolic disorders, which are often coupled with oxidative stress.” 

Let’s see if we can take a closer look at what nitric oxide does in your kidneys. 

NCBI, The National Center for Biotechnology Information – which is part of the United National Library of Medicine, which in turn, is part of the National Institutes of Health tells us: 

“Nitric oxide has been implicated in many physiologic processes that influence both acute and long-term control of kidney function. Its net effect in the kidney is to promote natriuresis and diuresis, contributing to adaptation to variations of dietary salt intake and maintenance of normal blood pressure…. 

In chronic kidney diseases, the systolic [That’s the top number, in case you’ve forgotten.] blood pressure is correlated with the plasma level of asymmetric dimethylarginine, an endogenous inhibitor of nitric oxide synthase. A reduced production and biological action of nitric oxide is associated with an elevation of arterial pressure, and conversely, an exaggerated activity may represent a compensatory mechanism to mitigate the hypertension.”   

Hmmm, maybe we’ll understand that better if we had a few definitions under our collective belt. Back to my favorite dictionary, the Merriam-Webster Dictionary. 

“endogenous – 1: growing or produced by growth from deep tissue 

2a: caused by factors inside the organism or system 

  b: produced or synthesized within the organism or system 

           [Looks like #2b will work for us.] 

synthase – any of various enzymes that catalyze the synthesis of a substance without involving the breaking of a high-energy phosphate bond (as in ATP) 

natriuresis – loss of sodium in the urine 

 diuresis – an increased excretion of urine” 

It seems to me that what the NCBI is basically saying is that if the nitric oxide in your kidney is not doing its job, your blood vessels don’t expand as they should, and you have high blood pressure. In addition, as we’ll learn right now, you could have more brain fog. Remember here, I’m not a doctor and have never claimed to be one. Moving on…  

A local brain wellness center, Renovare Brain Wellness, offers more information: 

“Nitric oxide expands the blood vessels, increases the blood flow, and decreases plaque formation and blood clotting…. 

On the average, we lose 10 percent of our body’s ability to make nitric oxide for every decade of life. By the age of 40, studies show that we make 50% less Nitric oxide than we did as a teenager.” 

I’m 74; this would mean that I have lost a whooping 70% [almost 75%?] of my nitric oxide production. No wonder my blood pressure is out of whack, to say nothing of my brain fog. 

I attempted to discover exactly how this process works but found the research too technical for me. Even using the dictionary, I could not quite understand what I was reading. I’ll bet your nephologist could explain it in simple terms. I intend to ask mine when I see him. 

On another subject, several years ago, before cancer and Covid which have kept me home for three years,

I joined others at the American Association of Kidney Patients’ Meeting in Tampa, Florida. I met many people in the kidney community there. Some I still work with. Some I’ve lost track of. Some helped me out with guest blogs when I was incapacitated by the cancer.

One of these people is James Myers. He is definitely a kidney warrior. Are you aware of James Myers’ multiple kidney groups on Facebook? Not to make light of the subject, but he’s got something for everyone. 

Kidney Advocates 

Kidney Writers 

Pre-Emptive Kidney Transplants 

Kidney Success Stories 

Kidneys and Diabetes 

Take Care of Your Kidneys 

Acute Kidney Injury 

Kidneys and Science 

Home Dialysis 

Kidneys and Your Heart 

This is only a partial list of his Facebook groups. He’s also posted and been interviewed on other Facebook kidney groups such as Urban Outreach and AAKP’s page. He is a fount of information… and a good guy. Take a look. We all need a bit of support at some time in our kidney journey. 

I have a little vent to end today’s blog. As mentioned above, I’ve been housebound [except for medical appointments] for about three years. I am busy writing and taking care of Bear, but one thing I never am is bored. I don’t understand those that can’t find something in their homes they want to do. Or maybe a hobby they want to pursue. Others I know have started online businesses, finished their degrees, finally took the time to learn about that thing they’re obsessed with. Are you bored? Is there nothing that interests you enough to pursue it? Maybe you can help me understand. 

Until next week, 

Keep living your life! 

Pleasant Dreams

I have Sleep Apnea and so do many of you. I used a mouth guard for years. Once that stopped working for me, I switched to a BiPap, but wasn’t too happy with it. Quick reminder: BiPap means Bilevel Positive Airway Pressure or your prescription air pressure breathing in and a lighter air pressure breathing out.

My hair was always flattened, and I was always tired. I needed something that wouldn’t leak and had no head straps, but what? Then I discovered DreamPort. Since Sleep Apnea can affect your Chronic Kidney Disease and your Diabetes, and even your high blood pressure, I knew I had to share this new information with you.

Stuart Heatherington, the Founder and Executive Chairman of Bleep, LLC jumped to when I asked him to write a guest blog about his product. While this is not an advertisement for DreamPort, I do recommend it for those with Sleep Apnea who are having problems with mask leakage and/or are just plain tired of flattened hair and lines on their faces.

“Sleep Apnea is when a person stops breathing as they sleep, and it can happen hundreds of times a night. The person’s airway closes from as little as a few seconds to longer than a minute in severe cases. In order to start breathing again, you are jarred awake to break the obstruction with loud snoring and gasping for breath. Sleep Apnea disrupts normal restful sleep waking the individual up from 10/hr. to as much 150/hr., leaving the sufferer tired and stressed, and, if untreated, at a much higher risk of heart attack, stroke, kidney ailments, hypertension, blood sugar spikes, car accidents, memory issues, etc.

I’m sure many of you know a family member or friend suffering from Sleep Apnea, if you do not suffer from Sleep Apnea yourself. Almost everyone knows someone that falls asleep at family get-togethers or the second they sit in a car as a passenger.

The gold standard for treatment is called CPAP or APAP therapy. With this therapy a PAP machine uses room air to keep the airway open and prevent it from collapsing and causing an obstructive apnea. PAP therapy has been around for decades and is proven to effectively treat obstructive Sleep Apnea. However, many patients struggle with PAP therapy and it is largely due to the comfort of the mask.

There are hundreds of FDA approved CPAP masks on the market, and they all have one thing in common – the mask is held in place with headgear and straps. The issue with headgear is that although it holds the mask in place, it does not prevent leaks. Leaks occur when the seal between the mask and face/nose is broken, and air leaks out. The fix for the leaky mask is to tighten the headgear and mask on your face. This fix then leads to many other issues that trouble CPAP users such as lines on the face that last for hours, skin irritation and breakdown on the nose and in the nose, matted and damaged hair. Those are just a few examples. So, you can see how many CPAP users struggle with the therapy, to the point that some give up. The Bleep DreamPort Sleep Solution is different in that we do not use headgear, and we do not leak.     

The DreamPort is adhered to the nose using hypoallergenic surgical foam tape [Gail here: I have not had any problems with the adhesive.] to create a night-long leak-free seal. It’s Latex-Free, BPA-Free, Corn-Free and Silicone-Free on the seal. Because the tape adheres directly to the nose, there is no leak, and because there is no leak and no headgear, there is nothing to tighten. All the issues I previously mentioned just go away.

DreamPorts are nightly disposable, so each night the individual gets a fresh new set of DreamPorts to apply. Since we are different from traditional CPAP masks, it is very important that the instructions are carefully read, or the instructional video is watched to ensure proper use. It is also important to clean your nose area prior to applying the DreamPorts with an astringent such as Witch Hazel or Alcohol, as soaps have oils and moisturizers in them that can impact the ability of the adhesive to stay on all night.

Because there is no leak and no headgear, the individual can sleep in any position. With a standard CPAP mask and traditional headgear, whenever the individual rolled over on their side, the pillow pressed up against the mask and caused a leak. This leak would wake up the individual. Because DreamPort seals so well, the pillow will not cause a leak and the individual can sleep in any position.     

I am a Sleep Apnea sufferer myself and have experienced all the issues most people have with Sleep Apnea. A number of years back, while traveling to a CEU conference, I woke up at 3AM with an epiphany. I jotted down the idea on a napkin and woke my wife up to talk about it until 5 a.m. That was a Saturday morning. We drove home Sunday after the show.

I went straight to Lowes and CVS and bought the items needed to put the proof-of-concept together. I took my old CPAP mask and reconfigured it using copper tubing from Lowes and corn patches bought at CVS and an older product called Provent that used a tape similar to our needs. Although the initial design was a bit crude, it worked all night at a pressure of 10 centimeters of pressure. On Monday morning I started the work of hiring a patent attorney and hired an engineer a couple days later to help with concept design. 

End result? You can find us on www.bleepsleep.com or visit our Facebook page at BleepSleep.”

I have no reservations about endorsing this product. How very nice to be able to sleep on my side again if I want to. How very nice to actually get a good night’s sleep again. Thank you for that, Stuart.  

What’s That Sound I Hear?

My husband suffers from tinnitus and often complains about how loud “the crickets” are. He tells me there’s nothing that can be done about this. But then, a reader asked about tinnitus, and I realized chronic kidney disease patients have a three time more likelihood of developing this malady. Now I can no longer accept that nothing can be done. 

Photo by Dane Sam on Pexels.com

Let’s start at the beginning. Just what is this? Oh goody, time to consult my favorite dictionary. That, of course, is The Merriam-Webster: 

“a sensation of noise (such as a ringing or roaring) that is typically caused by a bodily condition (such as a disturbance of the auditory nerve or wax in the ear) and usually is of the subjective form which can only be heard by the one affected” 

Wait a minute. That doesn’t say anything about chronic kidney disease. But a large study published by The National Center for Biotechnology Information [(NCBI] does:  

“This study presented that CKD is a significant and independent risk factor for tinnitus. The patients with CKD have a 3.02 times higher risk of developing tinnitus. Furthermore the patients with end stage renal disease and dialysis are at a 4.586 times risk of tinnitus than general population and carry a higher risk of tinnitus than the patients with CKD and without dialysis….”   

The NCBI is part of the United States National Library of Medicine [NLM], which is a branch of the National Institutes of Health [NIH].    

Everyday Health tells us what the causes of tinnitus may be: 

“Tinnitus is often associated with high blood pressure, allergies, and abnormal kidney function. Tinnitus can also occur because of: 

Tumors 

Cardiovascular problems 

Medication side effects 

Loss of hearing 

Being around very loud noises 

A head or neck injury 

Bones in the middle ear that become harder” 

 
Did you notice “high blood pressure” and “abnormal kidney function” in the explanation above? By the way, my husband had been around very loud noises the whole time he served in Vietnam.  

I found a highly readable explanation on the connection between the kidneys and ears at Hearing Unlimited. 

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

Photo by Hassan OUAJBIR on Pexels.com

It almost sounds unreal – how could the ears share similarities with the kidneys? But research has confirmed that physiological mechanisms of fluid and electrolyte balance are present in both organs. This matters because it means that when a health issue affects the functionality of one (i.e. the kidneys or the ears), it’s likely to affect the other ….” 

Now what? It’s there. You have CKD, but you don’t know if that’s the cause of your tinnitus. WebMD has some suggestions that may or may not work, but they seem worth a try… except for those you just can’t try because you have CKD. For example, I’d stay away from the herbals because they aren’t regulated. Do check any other medications with your nephrologist before you proceed. 

“Even if a specific cause is never found, there is still hope for successful treatment. A combination of therapies over time usually offer the best hope. 

Biofeedback, relaxation training, counseling, and individualized psychotherapy helps manage stress and helps you change your body’s reaction to the tinnitus. Tinnitus Retraining Therapy (TRT) combines counseling with special background sounds designed to help people suppress the sounds of their tinnitus. 

Antianxiety medications, such as Valium or Xanax, as well as a wide range of antidepressant medications, are very helpful for tinnitus sufferers. Other medications, such as diuretics (water pills), muscle relaxants, anticonvulsants medications, and antihistamines, are also used. 

Special hearing aids, electronic masking devices, or both, are often used when other methods have failed to achieve control. Cochlear implants and cochlear stimulation devices are being investigated for severe, intractable tinnitus cases. Surgical injections of lidocaine directly into the inner ear are also being used in some cases. 

Alternative treatments such as hypnosis, acupuncture, chiropractic adjustments, vitamin/mineral supplements, and herbal remedies may have some promise, but there is little, if any, meaningful research as to their effectiveness. Ginkgo biloba — which is being studied to determine its effectiveness for tinnitus — is said to improve blood flow and nerve function. Use ginkgo biloba with caution if you have a bleeding disorder or take blood thinners. Explore alternative options carefully, with the cooperation of your medical providers.” 

That got me to wondering if lifestyle changes could be of any help. Bingo! Hearing Associates of Las Vegas suggests you avoid the following: 

“Smoking 

Caffeine consumption 3 hours before bed 

Drink more water and less other liquids 

Any food triggers 

Listening to media at high settings” 

Photo by Andrea Piacquadio on Pexels.com

Avoiding smoking and drinking more water are two suggestions that would help your CKD even if you didn’t have tinnitus. 

I got curious about the special hearing aids since that’s something we hadn’t tried for my husband. In attempting to research that, I discovered something called a masker.  

“A tinnitus Masker is an electronic hearing aid device that generates and emits broad-band or narrow-band noise at low levels, designed to mask the presence of tinnitus. 
 
Such masking noise is also referred to as white noise. For an individual suffering from both hearing loss and tinnitus, the masker and the hearing aid can operate together as one instrument.” 

This information is from Hear-It. I thought you might think they were a selling site [as I did], so I’m including this information from their website: 

“Hear-it.org is a non-commercial web site and has been established to increase public awareness of hearing loss. Hear-it.org is one of the world’s leading and most comprehensive websites on hearing, hearing loss and tinnitus and how to treat and live with hearing loss or tinnitus.” 

Until next week, 

Keep living your life! 

A New Pregnancy and a New Diagnose

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

The Other Side of the Coin

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You won’t need lifelong medicines 

You can eat the same things you did before donation 

You can be active and play sports 

You can still get pregnant or father a child 

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

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

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

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

Until next week, 

Keep living your life!  

It’s All Connected

With Mother’s Day last month and Father’s Day this month, I’ve been thinking about family a lot. Basically, I’ve been wondering if there are any oblique links to chronic kidney disease for any members of my family. As I ruminated, one link popped up. One of my daughters has PCOS… and has recently been diagnosed with diabetes… which we know is the primary cause of CKD. Uh-oh. 

Photo by Klaus Nielsen on Pexels.com

Let’s see how this all works. We know that CKD is the progressive decline of your kidney function for at least three months. We know that diabetes is either not producing insulin, which is type 1, or being unable to make use of the insulin you do produce, which is type 2. By the way, I’m type 2 but that was diagnosed many years after the ckd was diagnosed for me. CKD is also a prime cause of diabetes. It works both ways: CKD can cause diabetes and diabetes can cause CKD.  

And PCOS? Each time, my daughter tells me about it I have to ask, “Uh, what is that again?” PCOS is polycystic ovary syndrome. Big help, huh? Thank goodness for a more thorough answer from my old buddy TheMayoClinic: 

“Polycystic ovary syndrome (PCOS) is a hormonal disorder common among women of reproductive age. Women with PCOS may have infrequent or prolonged menstrual periods or excess male hormone (androgen) levels. The ovaries may develop numerous small collections of fluid (follicles) and fail to regularly release eggs. 

The exact cause of PCOS is unknown. Early diagnosis and treatment along with weight loss may reduce the risk of long-term complications such as type 2 diabetes and heart disease.” 

I wondered if my daughter knew something was amiss or if her doctor picked this up, so I did the usual – looked up the symptoms. I found John Hopkins Medicine the most helpful source for this information: 

“The symptoms of PCOS may include: 

Missed periods, irregular periods, or very light periods 

Ovaries that are large or have many cysts 

Excess body hair, including the chest, stomach, and back (hirsutism) 

Weight gain, especially around the belly (abdomen) 

Acne or oily skin 

Male-pattern baldness or thinning hair 

Infertility  

Small pieces of excess skin on the neck or armpits (skin tags) 

Dark or thick skin patches on the back of the neck, in the armpits, and under the breasts” 

Wait a minute. This is not that clear. Where does the insulin part of PCOS come in? That’s what is responsible for diabetes and diabetes is the foremost cause of CKD. Webmd explains: 

“Your body makes hormones to make different things happen. Some affect your menstrual cycle and are tied to your ability to have a baby. The hormones that play a role in PCOS include: 

Androgens. They’re often called male hormones, but women have them, too. Women with PCOS tend to have higher levels. 

Insulin. This hormone manages your blood sugar. If you have PCOS, your body might not react to insulin the way it should. 

Progesterone. With PCOS, your body may not have enough of this hormone. You might miss your periods for a long time or have trouble predicting when they’ll come.” 

Aha! So PCOS interferes with your insulin… which is practically the definition of insulin. MedicalNewsToday confirms this in describing the three major types of diabetes: 

“Type I diabetes: Also known as juvenile diabetes, this type occurs when the body fails to produce insulin. People with type I diabetes are insulin-dependent, which means they must take artificial insulin daily to stay alive. 

Type 2 diabetes: Type 2 diabetes affects the way the body uses insulin. While the body still makes insulin, unlike in type I, the cells in the body do not respond to it as effectively as they once did. This is the most common type of diabetes, according to the National Institute of Diabetes and Digestive and Kidney Diseases, and it has strong links with obesity. 

Gestational diabetes: This type occurs in women during pregnancy when the body can become less sensitive to insulin. Gestational diabetes does not occur in all women and usually resolves after giving birth.” 

Let’s move on to how diabetes can cause CKD, just in case you’ve forgotten. The National Institutes of Diabetes and Digestive and Kidney Diseases, which is part of the National Institutes of Health, which is part of the U.S. Department of Health and Human Services is of service here: 

“High blood glucose, also called blood sugar, can damage the blood vessels in your kidneys. When the blood vessels are damaged, they don’t work as well. Many people with diabetes also develop high blood pressure, which can also damage your kidneys….” 

Remember, it’s your insulin that controls the amount of blood glucose you have. Without producing insulin or if your body doesn’t respond well to insulin, you have diabetes. If you have diabetes your kidneys’ blood vessels may be damaged and you may ‘develop high blood pressure,’ which is a major cause of CKD. 

High blood pressure is actually the second most likely cause of CKD. So, it seems that PCOS can lead to diabetes which may lead to high blood pressure, the latter two both major causes of CKD. It seems to me that I noticed cardiovascular risk can also be associated with PCOS. VeryWellHealth makes it clear how this happens: 

“Having PCOS increases a woman’s chances of getting heart-related complications. 

This is due to the higher levels of insulin that have been associated with PCOS and are known to increase one’s risk for elevated triglycerides, low levels of high-density lipoprotein (HDL), high cholesterol, blood pressure, and atherosclerosis. These conditions can increase your risk for a heart attack and stroke.” 

I wonder if you’ve realized that CKD can also cause heart problems. The Kidney Fund clarifies: 

“The heart and the kidneys work closely together. When there is a problem with one, things can go wrong in the other. Heart disease can cause CKD, and CKD can also cause heart disease. 

When you have heart disease, your heart may not pump blood in the right way. Your heart may become too full of blood. This causes pressure to build in the main vein connected to your kidneys, which may lead to a blockage and a reduced supply of oxygen rich blood to the kidneys. This can lead to kidney disease. 

When the kidneys are not working well, your hormone system, which regulates blood pressure, has to work harder to increase blood supply to the kidneys. When this happens, your heart has to pump harder, which can lead to heart disease.”  

It is all connected. PCOS to diabetes to CKD to heart problems. Before you start to worry, it doesn’t have to be like that. Take care of yourself and prevent the diseases if you can. 

Until next week, 

Keep living your life! 

A Question I Never Did Answer

 This has been a week fraught with the good (my friend’s high school graduation) and the bad (settling someone’s estate). I didn’t realize until yesterday that today would be Monday. What was I going to write about? I hadn’t really thought about it. Oh wait. Somewhere along the line recently, someone or some company asked me about Losartan. Good question. I could write about that.  I guess I’d better get digging. 

First thing I did was check Drugs.com to see what it is. 

“Losartan (Cozaar) belongs to a group of drugs called angiotensin II receptor antagonists. [Gail here: also called an ARB.] It keeps blood vessels from narrowing, which lowers blood pressure and improves blood flow. 

Losartan is used to treat high blood pressure (hypertension). It is also used to lower the risk of stroke in certain people with heart disease. 

Losartan is used to slow long-term kidney damage in people with type 2 diabetes who also have high blood pressure. 

Losartan may also be used for purposes not listed in this medication guide.” 

Now I know why it was mentioned to me. I have both high blood pressure and type 2 diabetes. But I’m not so sure I understand how it works. 

Let’s start figuring it out by defining angiotensin II receptor antagonists. First, we need to know that angiotensin ll receptor antagonists and angiotensin ll receptor blockers are one and the same. Now, Mayo Clinic to the rescue: 

“Angiotensin II receptor blockers help relax your veins and arteries to lower your blood pressure and make it easier for your heart to pump blood. 

Angiotensin is a chemical in your body that narrows your blood vessels. This narrowing can increase your blood pressure and force your heart to work harder. 

Angiotensin II receptor blockers block the action of angiotensin II. As a result, the medication allows your veins and arteries to widen (dilate).” 

Wait a minute here. If angiotensin is the chemical, why is there an ‘II’ after that word in the name of the receptor blocker? [I really do wonder about things like this.] Are you ready for this? According to  Encyclopaedia Britannica, there are not one, not two, but three kinds of angiotensin: 

“There are three forms of angiotensin. Angiotensin I is produced by the action of renin (an enzyme produced by the kidneys) on a protein called angiotensinogen, which is formed by the liver. Angiotensin I is transformed into angiotensin II in the blood by the action of angiotensin-converting enzyme (ACE). Angiotensin II acts directly on blood vessels, causing their constriction and thereby raising blood pressure. This substance also can cause vessel constriction through indirect mechanisms, such as by stimulating the release of the steroid hormone aldosterone and substances called catecholamines from the adrenal glands and by blocking the reuptake of the hormone norepinephrine into neurons. Angiotensin III is a metabolite of angiotensin II and shares similar, though less potent, actions.” 

Look at that kidney involvement, will you. But we are going down the rabbit hole, aren’t we? Okay, let’s get to it. The logical next step is to define aldosterone.  You and Your Hormones does just that: 

“Aldosterone is a steroid hormone. Its main role is to regulate salt and water in the body, thus having an effect on blood pressure.” 

Salt and water, also important to kidney function. 

So, what are catecholamines and why are they important to those of us with kidney disease? 

“Catecholamines increase heart rate, blood pressure, breathing rate, muscle strength, and mental alertness. They also lower the amount of blood going to the skin and intestines and increase blood going to the major organs, such as the brain, heart, and kidneys.” 

Thank you to the University of Michigan’s Michigan Medicine for an explanation that is easily understood. Did you notice the kidney involvement here, too? 

Just one more definition, but you need to know that norepinephrine and noradrenaline are the same thing. [Confusing!] I turned to Lumen Boundless Biology for help: 

“Norepinephrine, produced by the adrenal medulla, is a stress hormone that increases blood pressure, heart rate, and glucose from energy stores; in the kidneys, it will cause constriction of the smooth muscles, resulting in decreased or inhibited flow to the nephrons.” 

Uh-huh, the kidneys again. 

Alright, so it all sounds good to go with Losartan in that it will be helpful for your kidneys. Aha! That is not exactly the case. It turns out that doctors do not start kidney disease patients at the highest doses of losartan since that may cause hyperkalemia, better known as high potassium. Here’s a conundrum: Losartan can also cause kidney disease. This is what MedicalNewsToday tells us are the possible serious side effects of taking losartan. 

“High potassium blood levels. Symptoms can include: 

heart rhythm problems 

muscle weakness 

slow heart rate 

Allergic reactions. Symptoms can include: 

swelling of your face, lips, throat, or tongue 

Low blood pressure. Symptoms can include: 

feeling faint or dizzy 

Kidney disease. Symptoms can include: 

swelling in your feet, ankles, or hands 

Unexplained weight gain” 

Does this mean don’t take losartan even if it’s prescribed by your family doctor or nephrologist? No, not at all. It simply means you have to be carefully monitored. Remember, I’m not a doctor nor have I ever claimed to be one, so I urge you to check with yours. 

I kept running across RAAS in my searching. It turns out that mean Renin-Angiotensin- Aldosterone System. What’s that? Beats me. But the Merck Manual, Consumer Version knows: 

“Regulating Blood Pressure: The Renin-Angiotensin-Aldosterone System 

The renin-angiotensin-aldosterone system is a series of reactions designed to help regulate blood pressure. 

When blood pressure falls (for systolic, to 100 mm Hg or lower), the kidneys release the enzyme renin into the bloodstream. 

Renin splits angiotensinogen, a large protein that circulates in the bloodstream, into pieces. One piece is angiotensin I. 

Angiotensin I, which is relatively inactive, is split into pieces by angiotensin-converting enzyme (ACE). One piece is angiotensin II, a hormone, which is very active. 

Angiotensin II causes the muscular walls of small arteries (arterioles) to constrict, increasing blood pressure. Angiotensin II also triggers the release of the hormone aldosterone from the adrenal glands and vasopressin (antidiuretic hormone) from the pituitary gland. 

Aldosterone and vasopressin cause the kidneys to retain sodium (salt). Aldosterone also causes the kidneys to excrete potassium. The increased sodium causes water to be retained, thus increasing blood volume and blood pressure.” 

And it all comes full circle. Oh, one last thing: too much activation of the RAAS causes kidney disease. Oh, my. 

Until next week, 

Keep living your life! 

I’ve Had Cancer, But Not This Kind

Several days ago, I received a call from a cousin who I haven’t seen nor heard from since my brother’s funeral almost three years ago. You know that can’t be good… and it wasn’t. It seems she might have kidney cancer. We are a cancer prone family, but this is the first possible diagnose of this kind. She wanted to know what I knew about it and I had nothing to tell her. But I will after this blog and you’ll know a lot more about it, too.  

Having no knowledge of this kind of cancer except that it starts in the kidneys, I decided my usual go-to the Mayo Clinic might be the best place for a general overview. 

“In adults, renal cell carcinoma is the most common type of kidney cancer. Other less common types of kidney cancer can occur. Young children are more likely to develop a kind of kidney cancer called Wilms’ tumor. 

The incidence of kidney cancer seems to be increasing. One reason for this may be the fact that imaging techniques such as computerized tomography (CT) scans are being used more often. These tests may lead to the accidental discovery of more kidney cancers. Kidney cancer is often discovered at an early stage, when the cancer is small and confined to the kidney.” 

Let’s not forget that the kidneys are buried deep in the body where a physical examination may not reach for signs of tumors. 

My cousin said she had no symptoms. Was that usual with this type of cancer? I know from my own experience that sometimes those with Chronic Kidney Disease have no symptoms, but this was cancer. The Cancer Treatment Centers of America laid out the possible symptoms for us: 

“The most common sign of kidney cancer is blood in the urine (hematuria), which may make the urine look rusty or dark red. Other signs of kidney cancer may include:  

Low back pain or pressure on one side that doesn’t go away 

A mass or lump on the side or lower back 

Fatigue 

Loss of appetite or unexplained weight loss 

A persistent fever not caused by infection 

Anemia (low red blood cell count) 

Swelling of the ankles and legs 

In men, a cluster of enlarged veins, called a varicocele, around a testicle, typically, the right testicle 

Although these symptoms may indicate a kidney tumor, they also may be caused by other, less serious health issues. Some kidney cancer patients experience none of these signs, and others experience different symptoms entirely.” 

I was curious as to how my cousin knew what her primary physician suspected since she’d told me she hadn’t had a biopsy yet. WebMD explained the other tests she may have undergone. 

“Urine tests check for blood in your urine or other signs of problems. 

Blood tests show how well your kidneys are working. 

Intravenous pyelogram (IVP) involves X-raying your kidneys after the doctor injects a dye that travels to your urinary tract, highlighting any tumors. 

Ultrasound uses sound waves to create a picture of your kidneys. It can help tell if a tumor is solid or fluid-filled. 

A CT scan uses X-rays and a computer to create a series of detailed pictures of your kidneys. This may also require an injection of dye. CT scans have virtually replaced pyelogram and ultrasound as a tool for diagnosing kidney cancer. 

Magnetic resonance imaging (MRI) uses strong magnets and radio waves to create detailed images of soft tissues in your body. You may need an injection of a contrast agent to create better pictures. 

Renal arteriogram. This test is used to evaluate the blood supply to the tumor. It is not given often but may help diagnose small tumors. It has other uses, as well.” 

While blood and urine tests can also confirm CKD and are familiar to us, renal arteriogram was something that was new to me. So, it sounds like she may go straight to CT since both the pyelogram and ultrasound are not as effective in diagnosing kidney cancer. 

Picture this. My cousin has been diagnosed and is going slightly berserk. Cancer is not an easy diagnosis. She goes to her primary doctor and (s)he refers her to one of these specialists who will bring in the rest of the team: 

“In cancer care, different types of doctors often work together to create a patient’s overall treatment plan that combines different types of treatments. This is called a multidisciplinary team. For kidney cancer, the health care team usually includes these individuals: 

Urologist. A doctor who specializes in the genitourinary tract, which includes the kidneys, bladder, genitals, prostate, and testicles. 

Urologic oncologist. A urologist who specializes in treating cancers of the urinary tract. 

Medical oncologist. A doctor trained to treat cancer with systemic treatments using medications. 

Radiation oncologist. A doctor trained to treat cancer with radiation therapy. This doctor will be part of the team if radiation therapy is recommended. 

Cancer care teams include a variety of other health care professionals, such as physician assistants, nurse practitioners, oncology nurses, social workers, pharmacists, counselors, dietitians, and others.” 

Cancer.net, which is doctor approved patient information from the American Society of Clinical Oncologists, was my source for this information. 

Wait a minute. “What’s the role of the nephrologist in all this? After all, that’s the kidney specialist,” my cousin may ask. According to UCLA Health’s Core-Kidney: 

“Nephrologists screen and identify kidney cancer patients that are at high risk of developing CKD after surgery. Nephrologists team with urologists for ‘before and after surgery’ care of patients. Nephrologists are routinely consulted for optimization of blood pressure of kidney cancer patients, correction of anemia, avoidance of drugs that are potentially toxic to kidneys and adequate hydration of kidneys during contrast use with computer tomography or during surgery.” 

I know, I know. What’s important to her right now is how this kidney cancer may be treated. I went straight to the horse’s mouth (so to speak) for help with this one. The National Kidney Foundation offers a multitude of options. To paraphrase, they are: 

Open, laparoscopic surgery, or robotic surgery to remove part or all of the kidney 

Thermal ablation 

Active Surveillance 

Chemotherapy and Radiation 

There are more options for advanced kidney cancer. 

For the first time in a decade, I don’t know how to end this blog. Let’s put it this way; I’ve had cancer, even though it wasn’t kidney cancer and I just plain hope cancer is not something you’ll have to deal with. 

Until next week, 

Keep living your life! 

How Do You Know?

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

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

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

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

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

Dipstick urine test 

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

Urine albumin-to-creatinine ratio (UACR) 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The filtered waste products leave your body through urine. 

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

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

Until next week, 

Keep living your life! 

What About My Kids?

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

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

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

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

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

Thin Basement Membrane Disease 

Gitelman and Bartter Syndromes 

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

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

Hereditary Interstitial Kidney Disease: Gout associated inherited kidney diseases 

Tuberous Sclerosis 

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

Fabry Disease 

Nephronophthisis” 

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Dying is Not the End

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

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

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

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

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

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

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

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

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

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

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

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

Types of Deceased Donor Organs 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

National Kidney Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

1. Meet regularly with your health care team. Staying connected with your doctor, whether in-person or using telehealth via phone or computer, can help you maintain your kidney health. 

2. Manage blood pressure and monitor blood glucose levels. Work with your health care team to develop a plan to meet your blood pressure goals and check your blood glucose level regularly if you have diabetes. 

3. Take medicine as prescribed and avoid NSAIDs like ibuprofen and naproxen. Your pharmacist and doctor need to know about all the medicines you take. 

4. Aim for a healthy weight. Create a healthy meal plan and consider working with your doctor to develop a weight-loss plan that works for you. 

5. Reduce stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day. 

6. Make time for sleep. Aim for 7 to 8 hours of sleep per night. 

7. Quit smoking. If you smoke, take steps to quit. 

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

Learn more about managing kidney disease 

• Managing Chronic Kidney Disease 
• Eating Right for Chronic Kidney Disease 
• Nutrition for Advanced Chronic Kidney Disease in Adults 
• High Blood Pressure & Kidney Disease 
• Chronic Kidney Disease Tests & Diagnosis 
• Keeping Kidneys Safe – Know How Medicines Affect the Kidneys External link 
• Kidney Disease in Children” 

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

Until next week, 

Keep living your life! 

World Kidney Day, 2021

Will you look at that? The world keeps moving on, pandemic or not. And so, I recognize that Thursday of this week is World Kidney Day. In honor of this occasion, I’ve chosen to update whatever I’ve written about World Kidney Day before … now sit back and enjoy the read. 

…World Kidney Day? What’s that? I discovered this is a fairly new designation. It was only fifteen years ago that it was initiated. 

 According to http://worldkidneyday.org, 

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

Sound familiar? That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; SlowItDownCKD 2011; SlowItDownCKD 2012; 

SlowItDownCKD 2013; SlowItDownCKD 2014; SlowItDownCKD 2015;

 SlowItDownCKD 2016; SlowItDownCKD 2017; 

SlowItDownCKD 2018; SlowItDownCKD 2019, the soon to be published SlowItDownCKD 2020; Facebook; Instagram; LinkedIn; Pinterest; Twitter; and this blog. We may be running along different tracks, but we’re headed in the same direction. 

According to their website,  

“The International Society of Nephrology (ISN) is a global professional association dedicated to advancing kidney health worldwide since 1960 through education, grants, research, and advocacy.  

We do this for all our stakeholders by:  

BRIDGING THE GAPS of available care through advocacy and collaborations with our global partners  

BUILDING CAPACITY in healthcare professionals via granting programs, education and research  

CONNNECTING OUR COMMUNITY to develop a stronger understanding of the management of kidney disease.  

The ISN, through its members and in collaboration with national and regional societies, engages 30,000 health professionals from across the globe to reduce the burden of kidney diseases and provide optimal health care for patients.”  

If you go to Initiatives on the ISN’s website, you’ll find the following: 

“World Kidney Day (WKD) is a joint initiative between the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). 

World Kidney Day is a global campaign that aims to raise awareness of the importance of our kidneys to overall health and to reduce the frequency and impact of kidney disease and its associated health problems. 

World Kidney Day is an annual event that takes place worldwide. Hundreds of organizations and individuals launch initiatives and events on WKD to help raise awareness of kidney disease.” 

Now we just need to know what the International Federation of Kidney Foundations (IFKF) has to say about themselves: 

“Vision 

Better kidney health for all. 

Optimal care for people affected with Kidney Disease or Kidney Failure. 

Mission 

Leading a worldwide movement to 

Promote better kidney health with primary, secondary and tertiary preventive measures. 

Promote optimal treatment and care so as to maximize the health, quality of life, and longevity for people with or at high risk for developing Kidney Disease or Kidney Failure.” 

As of July of last year, the name has been changed to the International Federation of Kidney Foundations – World Kidney Alliance (IFKF-WKA) 

Photo by Karolina Grabowska on Pexels.com

Back to World Kidney Day’s website now, if you please. 

“The World Kidney Day Steering Committee has declared 2021 the year of ‘Living Well with Kidney Disease’. This has been done in order to both increase education and awareness about effective symptom management and patient empowerment, with the ultimate goal of encouraging life participation. Whilst effective measures to prevent kidney disease and its progression are important, patients with kidney disease – including those who depend on dialysis and transplantation – and their care-partners should also feel supported, especially during pandemics and other challenging periods, by the concerted efforts of kidney care communities.” 

Their site offers materials and ideas for events as well as a map of global events. Prepare to be awed at how wide spread World Kidney Day events are. 

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to a toolbox full of helpful education about your kidneys to preventative measures. 

Just as this year’s, the previous World Kidney Day themes were all educational and much needed by the CKD community. 

“2020 Kidney Health for Everyone Everywhere – from Prevention to Detection and Equitable Access to Care 

2019 Kidney Health for Everyone, Everywhere 

2018 Kidneys & Women’s Health. Include, Value, Empower 

2017 Kidney Disease & Obesity – Healthy Lifestyle for Healthy Kidneys 

2016 Kidney Disease & Children – Act Early to Prevent It! 

2015 Kidney Health for All 

2014 Chronic Kidney Disease (CKD) and aging 

2013 Kidneys for Life – Stop Kidney Attack! 

2012 Donate – Kidneys for Life – Receive 

2011 Protect your kidneys: Save your heart 

2010 Protect your kidneys: Control diabetes 

2009 Protect your kidneys: Keep your pressure down 

2008 Your amazing kidneys! 

2007 CKD: Common, harmful and treatable 

2006 Are your kidneys OK?” 

If only my nurse practitioner had been aware of National Kidney Month [That’s the topic of next week’s blog] or World Kidney Day, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier? That was thirteen years ago. This shouldn’t still be happening… but it is. 

Photo by Gabby K on Pexels.com

I received a phone call a few years ago that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately. 

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about. There had been no diagnose of Chronic Kidney Disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD. 

What a waste of the precious time he could have had to do more than stop smoking, which he did [to his credit], the moment he was told it would help with the diabetes.  Would he be where he was then if his medical practitioners had been aware of National Kidney Month or World Kidney Day, especially since this man was high risk due to his age and diabetes?  I fervently believe so. 

I have a close friend who was involved in the local senior center where she lives.  She said she didn’t know anyone else but me who had this disease.  Since 1 out of every 7 people does nationally (That’s 15% of the adult population) and being over 65 places you in a high risk group, I wonder how many of her friends were included in the 90% of those in the early stage of CKD who don’t know they have CKD or don’t even know they need to be tested.  I’d have rather been mistaken here, but I’m afraid I wasn’t. National Kidney Month or World Kidney Day could have helped them become aware. Thank you to the CDC for these figures. Please note the figures are as of 2019. 

For those of you who have forgotten [Easily understood explanations of what results of the different items on your tests mean are in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.], all it takes is a blood test and a urine test to detect CKD.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem. 

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog or hit ‘Apps’ on the Topics Dropdown .Responsum is a good place to start. None of us needs to hear another sorrowful, “If only I had known!” 

Until next week, 

Keep living your life! 

Black History Month: Entertainers I Miss

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Your Kidneys and Covid – or – Covid and Your Kidneys

Thanks to an unidentified woman at The Virginia G. Piper Cancer Center who passed a telephone number on to me, Bear and I have appointments for both our first and second Covid vaccinations. That got me to thinking. In this time of Covid with its breathing problems, is Chronic Kidney Disease involved in some way? We know that Covid can cause Acute Kidney Injury, but this is different. It’s trying to find out if CKD can contribute to Covid. 

Respiratory Acidosis sprang to mind, probably because of the word ‘respiratory.’ We already know acidosis can be a problem for CKD patients, but does it contribute to Covid? I didn’t know, so I started my search for an answer at The National Center for Biotechnology Information.    

“Acid-base disorders are common in patients with chronic kidney disease, with chronic metabolic acidosis receiving the most attention clinically in terms of diagnosis and treatment. A number of observational studies have reported on the prevalence of acid-base disorders in this patient population and their relationship with outcomes, mostly focusing on chronic metabolic acidosis…. “ 

Okay, so we’ve established chronic metabolic acidosis is common in CKD patients, but what is that? The National Kidney Foundation explains: 

“The buildup of acid in the body due to kidney disease or kidney failure is called metabolic acidosis. When your body fluids contain too much acid, it means that your body is either not getting rid of enough acid, is making too much acid, or cannot balance the acid in your body.” 

And, of course, we know that chronic means long term as opposed to acute, which means sudden onset. 

But respiratory acidosis? Is that part of acidosis? MedlinePlus came to the rescue with an easily understood definition for us: 

“Respiratory acidosis is a condition that occurs when the lungs cannot remove all of the carbon dioxide the body produces. This causes body fluids, especially the blood, to become too acidic.” 

Let me think a minute to figure out how this is all connected. Got it!  Let’s go back to what the kidneys do for us. 

“Your kidneys remove wastes and extra fluid from your body. Your kidneys also remove acid that is produced by the cells of your body and maintain a healthy balance of water, salts, and minerals—such as sodium, calcium, phosphorus, and potassium—in your blood. 

Without this balance, nerves, muscles, and other tissues in your body may not work normally. 

Your kidneys also make hormones that help 

• control your blood pressure 
• make red blood cells  
• keep your bones strong and healthy” 

Thank you to the National Institute of Diabetes and Digestive and Kidney Diseases for the above information. 

Aha! Carbon dioxide is a waste product even though the body produces it. The kidneys are tasked with removing wastes. CKD is a progressive decline in your kidney function for over three months. Decline as in don’t work as well. Oh, my. CKD can contribute to breathing problems with Covid. 

The January, 2021, issue of NDT [ Gail here: that stands for Nephrology, Dialysis, Transplantation] tells us: 

“Although not listed in initial reports as a risk factor for severe COVID-19, CKD has emerged not only as the most prevalent comorbidity conveying an increased risk for severe COVID-19, but also as the comorbidity that conveys the highest risk for severe COVID-19. The increased risk is evident below the threshold of eGFR that defines CKD and the risk increases as the eGFR decreases, with the highest risk in patients on kidney replacement therapy. Although CKD patients are known to be at increased risk of death due to infectious diseases, the factors contributing to their greater vulnerability for severe COVID-19 should be explored, as these may provide valuable insights into therapeutic approaches to the disease in this patient group. It is presently unknown if earlier categories of CKD (G1/G2, i.e. patients with preserved kidney function but with increased albuminuria) are also at an increased risk of severe COVID-19, and this must be explored. Moreover, the recognition that CKD significantly contributes to the severity of COVID-19 should now result in focused efforts to improve outcomes for the 850 million global CKD patients.”  

Uh-oh, do we panic now? No, no, no.  We protect ourselves. The Centers for Disease Control and Prevention [CDC] has been extremely vocal about this: 

“It is especially important for people at increased risk of severe illness from COVID-19, and those who live with them, to protect themselves from getting COVID-19. 

The best way to protect yourself and to help reduce the spread of the virus that causes COVID-19 is to: 

Limit your interactions with other people as much as possible. 

Take precautions to prevent getting COVID-19 when you do interact with others. 

If you start feeling sick and think you may have COVID-19, get in touch with your healthcare provider within 24 hours.  If you don’t have a healthcare provider, contact your nearest community health center or health department.” 

The CDC further explains: 

“Three Important Ways to Slow the Spread 

Wear a mask to protect yourself and others and stop the spread of COVID-19. 

Stay at least 6 feet (about 2 arm lengths) from others who don’t live with you. 

Avoid crowds. The more people you are in contact with, the more likely you are to be exposed to COVID-19.” 

By the way, the CDC acknowledges that CKD raises your risk of getting Covid… as does diabetes… and possibly hypertension. These are also the two primary causes of CKD.  

Until next week,

Keep living your life!