Let’s Do This One Last Time

There’s a word banging around in my brain. Although I’ve looked it up several times, I still am not quite sure what it means or how to use it. Why not come along with me for what I’m hoping is the last time of figuring it out? Whoops, forgot to tell you what the word is. It’s amyloidosis.

I vaguely thought I remembered it was something on a blood test. I vaguely thought wrong. Okay, let’s go to the experts then. verywellhealth had this information:

“ Amyloidosis is sometimes called a protein misfolding disorder, in which misfolded [Gail here: never heard of this before. Have you?] proteins are the main reason the condition develops….

 The specific protein involved differs between types of amyloidosis.

The normal versions of amyloid proteins typically have jobs in the body, from supporting immunity to regulating fluid balance and body processes. When the normal proteins finish their assigned jobs, they leave the bloodstream. But with amyloidosis, they misfold, take on abnormal shapes, and get deposited into the organs. 

Amyloidosis is either systemic (widespread or affecting the whole body) or localized to one body area, and there are multiple subtypes. 

Systemic amyloidosis is more common and can affect multiple organs and body tissues…. Left untreated, it can lead to organ damage. Localized amyloidosis will affect one organ or only one area of the body.” 

That sounds terrible. Of course, the next question I had – since it isn’t part of a blood test as I’d originally thought – was: Are there symptoms? How do you know if you have amyloidosis? WebMd was right there with the answer:

Photo by Andrea Piacquadio on Pexels.com

“Symptoms of amyloidosis are often subtle. They can also vary greatly depending on where the amyloid protein is collecting in the body. It is important to note that the symptoms described below may be due to a variety of health problems. Only your doctor can make a diagnosis of amyloidosis.

General symptoms of amyloidosis may include:

• Changes in skin color
• Severe fatigue
• Feeling of fullness
• Joint pain
• Low red blood cell count (anemia)
• Shortness of breath
• Swelling of the tongue
• Tingling and numbness in legs and feet
• Weak hand grip
• Severe weakness
• Sudden weight loss”

Like many other people I’m certain, I have several of these symptoms. Therefore, I’m going to bold the warning above:

It is important to note that the symptoms described below may be due to a variety of health problems. Only your doctor can make a diagnosis of amyloidosis.

I don’t know about you, but that gives me a bit of relief. Yet, I still want to know how my doctor can diagnose amyloidosis. I turned to Johns Hopkins Medicine for the answer:

“To see if you have amyloidosis, your doctor will likely order tests. A urine test and a blood test may be followed by one or more imaging procedures to take a look at your body’s internal organs, such as an echocardiogram , nuclear heart test or liver ultrasound . A genetic test may be necessary to see if you have the familial form of amyloidosis.

You might undergo a biopsy, where the doctor takes a small sample of your bone marrow or another organ to examine under the microscope.”

Wait a minute. I got that you may have the symptoms, you see your doctor, and she/he runs tests. I’ve been reading that there’s no cure. I’ve also been reading that the kidneys are affected in several types of amyloidosis. What now? Healthline suggested these treatments:

“These medications can be used to help control amyloidosis symptoms:

• pain relievers
• drugs to manage diarrhea, nausea, and vomiting
• diuretics to reduce fluid buildup in your body
• blood thinners to prevent blood clots
• medications to control your heart rate”

Of course, I became curious about the different types of amyloidosis. Thank you to the Mayo Clinic for this information:

“Types of amyloidosis include:

• AL amyloidosis (immunoglobulin light chain amyloidosis). This is the most common type of amyloidosis in developed countries. AL amyloidosis is also called primary amyloidosis. It usually affects the heart, kidneys, liver and nerves.
• AA amyloidosis. This type is also known as secondary amyloidosis. It’s usually triggered by an inflammatory disease, such as rheumatoid arthritis. It most commonly affects the kidneys, liver and spleen.
• Hereditary amyloidosis (familial amyloidosis). This inherited disorder often affects the nerves, heart and kidneys. It most commonly happens when a protein made by your liver is abnormal. This protein is called transthyretin (TTR).
• Wild-type amyloidosis. This variety has also been called senile systemic amyloidosis. It occurs when the TTR protein made by the liver is normal but produces amyloid for unknown reasons. Wild-type amyloidosis tends to affect men over age 70 and often targets the heart. It can also cause carpal tunnel syndrome.
• Localized amyloidosis. This type of amyloidosis often has a better prognosis than the varieties that affect multiple organ systems. Typical sites for localized amyloidosis include the bladder, skin, throat or lungs. Correct diagnosis is important so that treatments that affect the entire body can be avoided.”

Okay, now I was getting a little [Okay, a lot] nervous so I checked out who would be at risk for this disease. Cedars-Sinai tells us:

“The risk of developing amyloidosis is greater in people who:

• Are older than 50
• Have a chronic infection or inflammatory disease
• Have a family history of amyloidosis
• Have multiple myeloma. Between 10 and 15% of people who have multiple myeloma develop amyloidosis.
• Have a kidney disease that has required dialysis for more than five years”

Don’t panic. I’ve read again and again that dialysis has advanced to the point that fewer and fewer dialysis patients are developing amyloidosis. As usual there’s much more information available, [There’s always more.] so I urge you to visit these sites yourself if the blog has got you thinking.

Until next week,

Keep living your life!

And, Finally … (Part 1)

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

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

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

 THE CONNECTION BETWEEN CKD AND HEARING LOSS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

We’re Just Not Compatible

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

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

Photo by Nathan Cowley on Pexels.com

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

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

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

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

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

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

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

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

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

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

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

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

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

“The spleen’s main roles are:

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

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

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

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

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

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

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

Until next week,

Keep living your life!

It’s National Kidney Month

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

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

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

HISTORY OF NATIONAL KIDNEY MONTH

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

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

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

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

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

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

NATIONAL KIDNEY MONTH TIMELINE

1984

National Organ Transplant Act Passes

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

1954

First Successful Kidney Transplant

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

1943

Dialysis Invented

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

1902

Animal Experiments

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

NATIONAL KIDNEY MONTH FAQS

What month is National Kidney Month?

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

Is there a ribbon for kidney disease?

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

What are the symptoms of chronic kidney disease?

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

HOW TO OBSERVE NATIONAL KIDNEY MONTH

1. Join the organ donor registry

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

2. Donate to a kidney non-profit

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

3. Be good to your kidneys

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

5 FASCINATING FACTS ABOUT KIDNEYS

1. You only need one kidney to live

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

2. Your kidneys are lopsided

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

3. You can drink too much water

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

4. Sausage casing and orange juice cans

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

5. Climate change may increase kidney disease

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

WHY NATIONAL KIDNEY MONTH IS IMPORTANT

1. It reminds us to be good to our bodies

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

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

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

3. It shows that science is awesome

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

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

Until next week,

Keep living your life!

And the Nose…

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

Photo by Anastasia Shuraeva on Pexels.com

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

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

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

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

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

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

Science Digest included this information that may help:

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

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

• •

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

• •

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

• •

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

• •

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

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

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

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

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

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

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

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

More ideas to help you manage taste changes:

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

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

Until next week,

Keep living your life!

Have Some Water

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

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

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

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

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

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

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

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

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

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

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

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

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

I discovered some surprises on WebMD:

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Loyal Reader Strikes Again!

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

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

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

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

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

“the posterior opening of the digestive tract”

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

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

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

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

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

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

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

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

Obviously, something must be done. But what?

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

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

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

MedlinePlus has a wonderfully simple explanation of peristalsis:

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

Peristalsis is an automatic and important process. It moves:

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Opting Out of Dialysis

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

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

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

Conservative care (also called supportive care) aims to:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

There’s Nothing Vague About It

Now that I have your attention, I wonder if you’ve ever heard of the vagus nerve and its connection to your kidneys. It kept popping up in my dreams, so I thought it might be worth exploring. Of course, I needed to bring you along in my exploration.

Instead of going directly to my favorite dictionary, I turned to WebMD since I felt this term needed a simpler definition than even the dictionary could provide.

“The vagus (vagal) nerve is also known as the 10th cranial nerve or cranial nerve X. It starts in your medulla oblongata, a part of the brain that connects to the spinal cord, and splits off into many branches that extend down through your neck to your vital abdominal organs.

This long nerve makes up 3/4 of the nerve tissue in your parasympathetic nervous system. In fact, the vagus nerve is the longest of any of the 12 cranial nerves.”

Nice. But what does it actually do? I searched and found this explanation on Physiopedia, a UK charity organization that offers rehabilitation education:

“The vagus nerve has a very extensive distribution.

• Sensory: Innervates the skin of the external acoustic meatus and the internal surfaces of the laryngopharynx and larynx. Provides visceral sensation to the heart and abdominal viscera.
• Special Sensory: Provides taste sensation to the epiglottis and root of the tongue.
• Motor: Provides motor innervation to the majority of the muscles of the pharynx, soft palate and larynx.
• Parasympathetic: Innervates the smooth muscle of the trachea, bronchi and gastro-intestinal tract and regulates heart rhythm. Its cardiac branches act to slow the rate of heartbeat; its bronchial branch acts to constrict the bronchi; and its esophageal branches control involuntary muscles in the esophagus, stomach, gallbladder, pancreas, and small intestine, stimulating peristalsis and gastrointestinal secretions. …^”

Wait a minute. What about the kidneys? InKidney helped out here. InKidney was formed by healthcare professionals that are concerned about the wide spread of kidney disease worldwide.

“Emotional stress can be associated with faster progression of CKD. The kidneys have both sympathetic and parasympathetic innervation. Acute stress can worsen kidney function, while relaxation practices can promote kidney health. Stimulating the vagus nerve can turn on the parasympathetic nervous system, improving renal blood flow and modulating inflammation in CKD. Stress reduction and the natural stimulation of the vagus nerve can help delay the progression of kidney disease.”

How about a reminder of what sympathetic and parasympathetic systems are. Thanks to The Cleveland Clinic for this information:

“Your sympathetic nervous system is part of your autonomic nervous system. It could be called your ‘automatic’ nervous system, as it is responsible for many functions that you don’t have to think about to control. This can include control of your heart rate, blood pressure, digestion, urination and sweating, among other functions.

Your sympathetic nervous system is best known for its role in responding to dangerous or stressful situations. In these situations, your sympathetic nervous system activates to speed up your heart rate, deliver more blood to areas of your body that need more oxygen or other responses to help your [sic] get out of danger.”

“Your parasympathetic nervous system is part of your autonomic nervous system. It could be called your ‘automatic’ nervous system, as it’s responsible for many functions that you don’t have to think about to control. This can include control of your heart rate, blood pressure, digestion, urination and sweating, among other functions.

The parasympathetic part of your autonomic nervous system balances your sympathetic nervous system. While your sympathetic nervous system controls your body’s ‘fight or flight’ response, your parasympathetic nervous system helps to control your body’s response during times of rest.”

Hopefully, these two definitions helped you to understand the connection between your kidneys and the vagus nerve. I must admit, they did help me.

Healthline gave me some insight into the varied possible symptoms of a damaged vagus nerve:

“Damage to the vagus nerve can result in a range of symptoms because the nerve is so long and affects many areas.

Potential symptoms of damage to the vagus nerve include:

• difficulty speaking
• loss or change of voice
• difficulty swallowing
• loss of the gag reflex
• low blood pressure
• slow or fast heart rate
• changes in the digestive process
• nausea or vomiting
• abdominal bloating or pain
• depression and anxiety in people with breathing problems or heart disease

The symptoms someone might have depend on what part of the nerve is damaged.”

I wanted to know how you stimulate the vagus nerve. I had a vision of a doctor reaching into a body incision and using their hands to do so. I doubt that’s how it’s done, though. Back to the ever helpful Cleveland Clinic for us:

“Meditation

Turn to this practice to help calm your mind and focus on deep breathing. While doing meditation, try extending your exhales, making them longer than your inhales. This will help slow your heart rate.

‘Meditation can regulate your autonomic nervous system,” says Dr. Estemalik. “It has a good effect on lowering rapid breathing, rapid heart rate and cortisol levels.’

Yoga can also be helpful for the same reasons. Just make sure you pay attention on your breathing.

Exercise

…. Working out and getting your body moving can affect your vagus nerve, research shows. Interval training and endurance training can increase your vagus nerve activity and improve your heart rate variability.

Massage

Research shows that reflexology (a kind of massage) can increase vagal tone and even decrease blood pressure.

‘Massage can reduce some of the heightened activity in the vagus nerve,’ says Dr. Estemalik.

Try giving yourself a foot massage by rotating your ankle, rubbing your sole in short strokes and gently stretching your toes back and forth.

Music

Music can help motivate us, bring us joy and tap into our emotions. When it comes to the vagus nerve, the research is mixed on how music affects it.

Your vagus nerve is connected to your vocal cords, the muscles at the back of your throat and passes through your inner ear.

Try humming or singing or just listening to calm, soothing music. Those sounds and vibrations may stimulate your vagus nerve.

Cold-water immersion

…. Research shows that cold-water immersion may help with stress by slowing your heart rate and directing blood flow to your brain. Try placing an ice pack on your face or neck or taking a cold shower.”

There is also a device that can be implanted under your skin, but I believe that is used for stroke victims, epilepsy, and migraines. That’s much more involved with this device, but that’s a whole other blog.

Remember: Stress leads to inflammation. Inflammation may lead to kidney disease.

Until next week,

Keep living your life!

Uncertainty

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Crazy Glue to the Rescue

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Comprehensive Vascular Care explains:

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

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

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

Until next week,

Keep living your life!

Here Comes That Old Refrain

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

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

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

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

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

“a cell or group of cells that receives stimuli”

And this is for motor end organ:

“a

: causing or imparting motion

b

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

motor fiber

c

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

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

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

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

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

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

Kidney Care UK offers a comprehensive explanation:

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

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

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

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

Photo by Andrea Piacquadio on Pexels.com

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

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

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

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

Chronic Kidney Disease:

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

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

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

Until next week,

Keep living your life!

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!

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!  

It’s Not What I Thought It Was

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Common Complications during Peritoneal Dialysis

Last week, I wrote about common complications during hemodialysis. Tonie, one of my readers, requested a blog about common complications during peritoneal dialysis. Folks, fair is fair in my book [Great pun, don’t you think?] or as my father used to say, “What’s good for the goose is good for the gander.” In other words, sure Tonie, if I can write about hemodialysis complications, I can do the same for peritoneal dialysis. 

Let’s start at the beginning, as usual. What is peritoneal dialysis? According to the Mayo Clinic, 

“Peritoneal dialysis (per-ih-toe-NEE-ul die-AL-uh-sis) is a way to remove waste products from your blood when your kidneys can’t adequately do the job any longer. This procedure filters the blood in a different way than does the more common blood-filtering procedure called hemodialysis. 

During peritoneal dialysis, a cleansing fluid flows through a tube (catheter) into part of your abdomen. The lining of your abdomen (peritoneum) acts as a filter and removes waste products from your blood. After a set period of time, the fluid with the filtered waste products flows out of your abdomen and is discarded. 

These treatments can be done at home, at work or while traveling….” 

The National Institute of Diabetes and Digestive and Kidney Disease tells us there is more than one kind of peritoneal dialysis. 

“You can choose the type of peritoneal dialysis that best fits your life: 

• continuous ambulatory peritoneal dialysis (CAPD) 
• automated peritoneal dialysis 

The main differences between the two types of peritoneal dialysis are 

• the schedule of exchanges 
• one uses a machine and the other is done by hand 

If one type of peritoneal dialysis doesn’t suit you, talk with your doctor about trying the other type. 

CAPD doesn’t use a machine. You do the exchanges during the day by hand. 

You can do exchanges by hand in any clean, well-lit place. Each exchange takes about 30 to 40 minutes. During an exchange, you can read, talk, watch television, or sleep. With CAPD, you keep the solution in your belly for 4 to 6 hours or more. The time that the dialysis solution is in your belly is called the dwell time. Usually, you change the solution at least four times a day and sleep with solution in your belly at night. You do not have to wake up at night to do an exchange. 

During an exchange, you can read, talk, watch television, or sleep. 

Automated peritoneal dialysis. A machine does the exchanges while you sleep. 

With automated peritoneal dialysis, a machine called a cycler fills and empties your belly three to five times during the night. In the morning, you begin the day with fresh solution in your belly. You may leave this solution in your belly all day or do one exchange in the middle of the afternoon without the machine. People sometimes call this treatment continuous cycler-assisted peritoneal dialysis or CCPD.” 

This sounded so much more attractive to me than hemodialysis that I wondered why more patients didn’t choose these types of treatment. There must be reasons. The Cleveland Clinic informs us what they are… and answers Tonie’s question. 

“Some people develop skin infections around the catheter. You’re also at risk for peritonitis, an infection that occurs when bacteria get inside the abdomen through the catheter. You may experience fever, abdominal pain, nausea and vomiting. 

Using the abdominal catheter and pumping your belly full of fluid can weaken abdominal muscles over time. You may develop a hernia. This condition occurs when an organ like the small intestine pokes through the abdominal muscles. You may feel a bulge near the belly button or in the groin area between the abdomen and upper thigh. Your doctor can repair a hernia with surgery. 

During peritoneal dialysis, your body absorbs dextrose, a sugar, from the dialysis solution. Over time, this extra sugar can lead to weight gain.” 

My husband, Bear, was reading over my shoulder and asked me if this catheter was like the PowerPort I had during chemotherapy. Azura Vascular Care explains it’s not, 

“PD catheter placement is typically performed as a minimally invasive procedure in an outpatient setting…. Percutaneous catheter placement is performed using fluoroscopy—an imaging technique that uses X-rays to help your vascular specialist view the inside of your abdomen…. This procedure requires only local anesthesia and sedation…. 

Your vascular specialist begins by using a fine needle to make a series of small punctures in your skin to access the peritoneum…. The PD catheter is then passed through a small tunnel in your belly into the peritoneum and secured in place. 

A PD catheter is made of silicone or another soft, flexible medical-grade material….Your catheter will have cuffs on it to prevent it from shifting and moving around, and that helps keep bacteria out of the tunnel and exit site. The PD catheter exit site is typically placed to the left or right of your belly button, you should discuss your personal placement preferences with your vascular specialist…. As you recover, your tissue will grow around and fill in part of the exit site as well to prevent the catheter from moving. 

After the PD catheter has been inserted, your vascular specialist will place sutures around the catheter on the outside of your abdomen and cover the site with a sterile dressing. 

PD catheter placement can usually be performed in under one hour…. However, you may spend additional time in the recovery room before going home so your vascular access team can monitor you for complications after the procedure.” 

Note from me: Some nephrologists and radiologists are trained in this surgery. 

Other complications may be: 

“Peritoneal Dialysis related infections, including peritonitis, exit‐site infections (ESI), and tunnel infections, are important complications, resulting in significant morbidity and risk of death.  

Early complications related to peritoneal access are divided into mechanical (bleeding, visceral perforation, dialysate leaks, catheter dysfunction, hernia formation, cuff extrusion) and infectious (early peritonitis, surgical wound, tunnel and exit site infections). 

…. Holding fluid in your abdomen for long periods may strain your muscles. 

Inadequate dialysis. Peritoneal dialysis can become ineffective after several years. You might need to switch to hemodialysis.” 

Thank you to Dialysis Care Centers (DCC) for this information. 

Good topic, Tonie. I’m glad you suggested it. 

Final note: SlowItDownCKD 2022 is out in print now! AND it’s free on Kindle Unlimited. I do request reviews, though. 

Until next week, 

Keep living your life! 

Common Complications during Hemodialysis

I post the blog on Facebook kidney diseases groups and have become online friends with some of the administrators of these groups. Vasundhara Raghavan, administrator of The Kidney Warriors Foundation, posted a cartoon in her group. Unfortunately, it wasn’t signed. But the cartoon caught my eye, since I didn’t know much about hemodialysis. I reposted it and Steve Belcher, executive director of Urban Kidney Alliance, Inc. and another online friend, thought it was important. Bingo! I get the chance to learn a little more about hemodialysis and so do you.   

Starting with the obvious, we need a definition of hemodialysis. At once, I turned to the National Kidney Foundation, 

“Healthy kidneys clean your blood and remove extra fluid in the form of urine. They also make substances that keep your body healthy. Dialysis replaces some of these functions when your kidneys no longer work. There are two different types of dialysis – hemodialysis and peritoneal dialysis.”   

Hmmm, how does it work? I was pretty sure I’d read something about that on the American Kidney Fund’s site, 

“During hemodialysis, your blood travels through tubes from your body into a dialysis machine. While your blood is in the machine, it goes through a filter called a dialyzer, which cleans your blood by removing some of the waste and extra fluid. Then, the cleaned blood travels through tubes from the dialysis machine back into your body. 

To get your blood into the dialyzer, your doctor needs to make an access, or entry, into your blood vessels. This is called vascular access.” 

Okay, now we’re ready to move on to the cartoon. It’s labeled ‘Complications of Hemodialysis’ and then lists the following ‘hypotension, muscle cramps, nausea & vomiting, headache, chest pain, back pain, itching, fever & chills.’ 

Being me, my first question was, “Why?” Let’s find out. 

Hypotension means low blood pressure. Dialysis Patient Citizens Education Center tells us, 

“Dialysis can only remove water that is in your blood. Only a small part of the water weight you gain is in your blood. If your feet are swollen (edema), fluid is in your tissues—not your blood. 

During a treatment, pressure forces fluid out of your blood, into the dialysate, and down the drain. Some water from other compartments [Gail here: those compartments are a.) in your cells and b.) in the tissues in-between your cells] can then move into your bloodstream (this is called vascular refilling), so it can be removed. In the 3 or 4 hours of a treatment, only so much water is in your blood or has time to move there. The machine is set to a fluid goal— your ‘dry weight,’ or weight without excess water. The dialysis machine keeps pushing, even if the water is not in your blood. And this is why you may feel awful. If your blood becomes too ‘dry,’ your blood pressure drops. This happens if you go below your dry weight, or even if you are above your dry weight, but the extra fluid is not in your bloodstream.” 

You know, now that I understand there are three compartments in your body that contain water, this makes sense. Hopefully, it does to you, too. 

What about muscle cramps? Fresenius Kidney Care, a dialysis provider, explains, 

“Factors associated with dialysis cramps include: 

Excessive weight gain between dialysis treatments: This excess fluid must be taken off at your next dialysis session, and you’ll need a higher ultrafiltration (UF) rate to achieve your dry weight (normal weight with no additional fluid). If your body can’t handle the higher UF rate, you may cramp. 

Overly aggressive fluid removal: Cramps can also happen if too much fluid is removed during the treatment. Tell a member of your care team if you think you may have gained weight. 

Cutting dialysis sessions short or skipping treatments: Reduced time on dialysis can lead to excessive fluid gains, requiring higher UF rates, which can cause cramping. 

Too much salt (sodium): High-sodium foods in your diet can cause increased thirst and excessive fluid gains between treatments, requiring a higher UF rate.” 

I think it would be helpful to define ultrafiltration, or UF, before we continue. Let’s go to my longtime favorite dictionary, the Merriam-Webster, for this: 

“filtration through a medium (such as a semipermeable capillary wall) which allows small molecules (as of water) to pass but holds back larger ones (as of protein)” 

I see. So, the medium is the dialyzer, and the larger molecules are those in waste products. Is this starting to make sense to you, too? 

Diagram showing how blood moves through dialyzer to filter out waste.

I’ll bet nausea and vomiting are from the hypotension, but it’s always better to be sure. Well, I was a little bit right as an article in the Journal of Renal Injury Prevention shows, 

“Nausea and vomiting occur for various reasons upon the initiation of hemodialysis. Many patients experience these symptoms during hemodialysis due to the rapid drop in blood pressure or urea …. Other causes of nausea and vomiting include fever response to municipal water and other materials, disequilibrium syndrome, anxiety, and general causes of nausea and vomiting …. The multiple etiology of the effects of ESRD and its treatment on the digestive system, the patient’s diet, medication regimen, and developed disabilities are also considered major causes of nausea and vomiting. Fluid overload is also associated with mucosal edema in the gastrointestinal system (along with early satiety), nausea, vomiting, and diarrhea ….” 

I think I found the answer re headaches in the Annals of Indian Academy of Neurology, 

“It was suggested that changes in the electrolytes during the hemodialysis session could be a reason for headache to develop which may be attributed to dialysis disequilibrium syndrome….” 

When I realized I was running out of space on today’s blog, I went the causes of chest pain during hemodialysis according to a site to teach dialysis techs, 

“• Ischemia to heart muscle (Coronary Artery Disease)  

• Anemia  

• Hypotension from fluid depletion  

• Hypovolemia [Gail again: this is volume depletion, particularly in blood volume during hemodialysis] 

• Anxiety-stress, physical exertion, illness  

• Blood flow rate increased too rapidly on patient with known cardiac disease” 

It seems that back pain, fever, and chills can all be caused by the same reasons as for those not on dialysis. However, I read repeatedly that you should still let your nurse or technician know if you experience any of these. 

DaVita Kidney Care, another dialysis provider offers this information about itching, 

“A common cause of itching is a high level of phosphorus in the body. Because dialysis doesn’t effectively remove phosphorus, a renal diet that limits foods high in phosphorous is prescribed. Additionally, taking phosphorus binders with every meal and snacks can help. Try to maintain a phosphorus level at 5.5 or less. Staying on dialysis for your full treatment time is also recommended, because it can remove some phosphorus as well as other wastes and toxins. “ 

Well, I know a bit more about possible hemodialysis complications now. I hope you do, too. 

Until next week, 

Keep living your life! 
 

Talk about Variations!

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

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

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

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

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

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

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

“Hepatitis C is connected to CKD because: 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The following symptoms may occur with HCV infection: 

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

aHus is …

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

TRIGGERS VS. THE CAUSE 

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

Photo by Andrea Piacquadio on Pexels.com

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

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

” The FDA has approved two drugs to treat aHUS: 

Eculizumab (Soliris) 

Ravulizumab (Ultomirus) 

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

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! 

Meet Me at the Meeting

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

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

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

Founded by Patients for Patients 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

What a Waste

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Nailed It!

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

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

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

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

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

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

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

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

I found this on ResearchGate: 

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

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

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

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

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

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

Onychomycosis in Patients with Chronic Renal Failure 

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

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

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

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

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

Beau’s lines 

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

Ridged nails 

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

White streaks/spots 

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

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

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

Until next week, 

Keep living your life! 

Did You Say Portable?

Way back in February of last year, I wrote about the Phase 1 KidneyX competition. Now we have the Phase 1 winner. Oh, you’ve forgotten what KidneyX is? No problem. This is from the previously mentioned blog: 

“The Kidney Innovation Accelerator (KidneyX), a public-private partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN), is accelerating innovation in the prevention, diagnosis, and treatment of kidney diseases.”       

According to USA.gov, “The U.S. Department of Health and Human Services protects the health of all Americans and provides essential human services.” The American Society of Nephrology (ASN) is self-explanatory. The two working together present a powerful front.  

This was posted on the KidneyX  Prize Winner’s site: 

“Winner: Development Of A Dialysate-Free Waterless Portable And Implantable Artificial Kidney 

Winning Submission 

We have created a portable artificial kidney device that fits into a backpack that can be used at night or at work while sitting on a nearby table. Moreover, taking advantage of the fact that the device does not need water or dialysate, we will use the same technology to create for the first time a completely implantable artificial kidney. Patients are very enthusiastic about our portable and implantable artificial kidney devices because they offer more personalized treatment than dialysis and because of the more accurate ability to control fluctuations in toxins to be removed. Importantly patients are also excited about the improvement in their quality of life because of the ability to use the device at home or at work coupled with the increased ease of treatment. In addition, for patients who chose to remain on peritoneal dialysis, our technology offers the advantage of decreasing the number of treatment fluid exchanges needed. The important advantages of our technology to patients include: 1) Since the use of the device occurs at night or during the day at home or at work, patients will no longer need to go to a dialysis clinic and will have increased mobility to travel and work; 2) The technology will provide patients with more treatment options; 2) Dialysate solutions, large R/O water tanks and large storage space for home modalities will no longer be needed decreasing the overall cost of treatment; 3) Given the potential for greater clearances and efficiency of treatment, the diet and fluid intake can be liberalized; 4) In its ultimately implantable format, patients will be entirely mobile and not require a CVC line or access; 5) Given the shortage of kidneys for transplant, patients who have dreamt for years of getting off dialysis will now be offered this opportunity. 

Submitter Bio 

Ira Kurtz, MD, FRCP, FASN, is Distinguished Professor of Medicine, Chief of the Division of Nephrology, Factor Chair, and a member of the University of California, Los Angeles (UCLA) Brain Research Institute. Dr. Kurtz is a scientific and medical advisor for US Kidney Research Corporation for the development of a portable and implantable artificial kidney. Dr. Kurtz is a graduate of the University of Toronto and completed his postgraduate training at both the University of California, San Francisco, and the National Institutes of Health. Dr. Kurtz has been a faculty member at UCLA since 1985 and is board-certified in Internal Medicine by the American Board of Internal Medicine and in Nephrology by the American Board of Nephrology. Dr. Kurtz is a Fellow of the Royal College of Physicians and Surgeons of Canada, and the American Society of Nephrology, and is listed in Southern California Super Doctors. He is a member of the American Society of Clinical Investigation, the American Physiological Society, the Biophysical Society, and the American Society of Nephrology. Dr. Kurtz has authored over 300 scientific publications, book chapters, and abstracts. He is on the editorial board of several scientific journals and is an external reviewer of major scientific publications and grants. Dr. Kurtz’s primary areas of research include ion transport-related diseases, the physiology and biophysics of molecular transport processes in the kidney and extrarenal organs, structural biology, the atomic structure of membrane proteins, and the development of an artificial kidney. 

Since I am not on dialysis, I needed some terms explained. Maybe you do, too. 

CVC line: A central venous catheter is a thin, flexible tube that is inserted into a vein, usually below the right collarbone, and guided (threaded) into a large vein above the right side of the heart called the superior vena cava. It is used to give intravenous fluids, blood transfusions, chemotherapy, and other drugs. [This definition is from the National Cancer Institute. Those following are from Merriam-Webster Dictionary.] 

Dialysate: the material that passes through the membrane in dialysis 

peritoneum: the smooth transparent serous membrane that lines the cavity of the abdomen of a mammal and is folded inward over the abdominal and pelvic viscera 

peritoneal dialysis: a procedure performed in the peritoneal cavity in which the peritoneum acts as the semipermeable membrane 

Putting myself in what I think might be the mindset of a dialysis patient, I am filled with hope at the thought of possibly making my life easier and allowing me to work again. I’d like to hear from actual dialysis patients to get your take on this new machine.’ 

But wait; there’s more. In Tina Daunt’s interview on UCLA Health, Dr. Kurtz tells us: 

“’The device we’re working on is complicated,’ Dr. Kurtz said. ‘We have four separate components in it. The first component is called the ultrafiltration module, and it filters the blood. By filtering the blood, what I mean is that it prevents the cells in the blood and proteins from getting into the rest of the device’….  

There are additional components in the device, including a nanofiltration module to prevent the excretion of sugar in the artificial urine and two custom-designed electrodeionization modules that transport various ions into the synthetic urine. One of the electrodeionization modules is specific for potassium. 

‘If your blood potassium changes by just a little bit, the electricity in your heart can just go wacko and your heart can stop,’ Dr. Kurtz said. ‘So it’s very important that we keep the potassium in the blood within a certain range.’ 

Finally, the device includes a reverse osmosis module that ensures the appropriate amount of water is excreted in the synthetic urine…. 

Dr. Kurtz estimates that his team needs another 18 months to refine the technology on the wearable artificial kidney and then will focus on the implantable artificial kidney….” 

18 months. The article was printed in January of last year. We are soooo close. 

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 3

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

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

Thank you to WebMd for this explanation: 

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

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

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

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

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

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

The harm can come quickly. And over time. 

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

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

Wow, you can actually visualize this. 

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

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

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

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

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

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

Table salt 

Cured meats, such as ham, bacon, and sausage 

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

Pre-packaged frozen dinners 

Ramen noodles, boxed noodles, and potato and rice mixes 

Canned soups and pasta sauce 

Pickled foods, such as olives, pickles, and sauerkraut 

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

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

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

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

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 2

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

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

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

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

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

The amount of water in your body 

The acidity of your blood (pH) 

Your muscle function 

Other important processes 

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

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

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

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

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

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

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

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

The amount of protein you need is based on: 

your body size 

your kidney problem  

the amount of protein in your urine 

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

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

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

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

Reminder: albuminuria and proteinuria are not the same thing. 

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

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

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

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

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

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

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

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

eggs 

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

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

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

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

Until next week, 

Keep living your life! 

Dialysis & Transplant Change Your Renal Diet – Part 1

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

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

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

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

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

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

“Many fresh fruits and vegetables are rich in potassium: 

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

Cooked spinach 

Cooked broccoli 

Potatoes 

Sweet potatoes 

Mushrooms 

Peas 

Cucumbers 

Zucchini 

Pumpkins 

Leafy greens …

Photo by Pixabay on Pexels.com

Orange juice 

Tomato juice 

Prune juice 

Apricot juice 

Grapefruit juice 

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

Some fish contain potassium: 

Tuna 

Halibut 

Cod 

Trout 

Rockfish 

Beans or legumes that are high in potassium include: 

Lima beans 

Pinto beans 

Kidney beans 

Soybeans 

Lentils 

Other foods that are rich in potassium include: 

Salt substitutes (read labels to check potassium levels) 

Molasses 

Nuts 

Meat and poultry 

Brown and wild rice 

Bran cereal 

Whole-wheat bread and pasta” 

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

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

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

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

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

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

Phosphorus additives found in foods include: 

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Bad Water

I found this on a slip of paper on my desk… in my handwriting. I wasn’t sure if this was for my #1 New Release for Chemotherapy on Amazon Cancer Dancer. But that was published last week. Then again, maybe it was the sequel (or prequel) I was thinking about for my time travel romance Portal in Time. Wait, maybe it was for a SlowItDownCKD blog. I was flummoxed. I figured I wouldn’t know unless I researched it. Sure enough, I got a hit: lead in the water and chronic kidney disease patients.

Let’s go with that. We know our kidneys love water, although your nephrologist may call it hydration. Many of us have been urged to drink 64 ounces daily. Obviously, not those on dialysis whose fluid intake is restricted. I’ve written about the fact that other liquids – like coffee or tea and anything that can melt to liquid form – count towards those 64 ounces. We know that sodas are one of the liquids we are to avoid, especially dark sodas since they contain phosphorous.  

On to that lead in the water. While this is harmful for anyone, I wondered why it is especially harmful to those with CKD. This is from a Journal of the American Society of Nephrology article published last year:

“’For individuals with heightened susceptibility to lead exposure, such as those with chronic kidney disease, there is no safe amount of lead contamination of drinking water,’ says John Danziger at Beth Israel Deaconess Medical Center in Massachusetts.

Danziger and his colleagues analysed health information from 597,968 patients with chronic kidney disease in the US who started dialysis between 2005 and 2017, as well as official data on lead concentrations in city water systems in the five years leading up to their dialysis initiation.

The team found that those who lived in cities with detectable levels of lead in the water systems had significantly lower concentrations of the oxygen-transporting protein haemoglobin in their blood before starting dialysis and during the first month of the therapy than people who lived where lead wasn’t detectable in the water. Lead is known to interfere with the ability of blood cells to produce haemoglobin, increasing the risk of anaemia.

Every 0.01 milligram per litre increase in lead concentration in the water was associated with a 0.02 gram per decilitre reduction in haemoglobin concentration in people’s blood.

The trend was observed even at lead levels below the US Environmental Protection Agency’s threshold of 0.015 milligrams per litre, which mandates regulatory action that can include public education, water treatment and lead service line replacement. ‘More comprehensive surveillance of household water is critical,’ says Danziger.”

Looks like a couple of definitions are in order. Hemoglobin [American spelling]:

“Transports oxygen in the blood via red blood cells and give the red blood cells their color”

While anemia [American spelling] is:

“A blood disease in which the number of red blood cells decreases”

Both these definitions are from my first CKD book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Although that book was published over a decade ago, the definitions haven’t changed.

Dr. Danziger mentions elsewhere in the article that he is referring to individuals with advanced CKD. What makes that even worse is that these people, those on dialysis, are the ones that need to limit their fluid intake. Do you remember that water is considered the best fluid for CKD patients?

MedPageToday has more from Dr. Danziger’s study:

“’Our findings suggest that for those with kidney disease, there is no safe amount of lead in drinking water,’ the researchers wrote. ‘While water has generally been considered a minor cause of lead toxicity, increased absorption and decreased excretion in those with kidney disease confer an exaggerated susceptibility.’

Children are at increased risk from lead exposure, and the complications of chronic kidney disease (CKD) confer similar susceptibility, the investigators explained. Metabolic conditions prevalent in CKD, such as hypocalcemia, iron deficiency, and malnutrition, increase the proportion of lead absorbed across the gastrointestinal tract. In addition, patients with CKD excrete lead less effectively, resulting in circulating levels that are much higher than in individuals with normal renal function.

In addition to its neurological, cardiovascular, and endocrine effects, lead can also cause significant hematological problems, the researchers noted. Studies have shown that lead interferes with heme biosynthesis, increases red cell destruction, and reduces gastrointestinal iron absorption, and lead toxicity has been linked with lower hemoglobin levels.”

Let’s pause for a definition some may need at this point. Hypocalcemia is too little calcium in the blood as determined by a blood test. In addition to keeping your bones and teeth strong, calcium is important to help your heart and muscles function properly. It also has a role in the clotting of your blood and your nerve function.

None of this sounds particularly good. So what do you do if you live in an area with ‘acceptable’ levels of lead in your water? The CDC suggests the following:

• “You can reduce or eliminate your exposure to lead in tap water by drinking or using only tap water that has been run through a “point-of-use”  filter certified by an independent testing organizationexternal icon to reduce or eliminate lead (NSF/ANSI standard 53 for lead removal and NSF/ANSI standard 42 for particulate removal). If you have a lead service line, use a filter for all water you use for drinking or cooking.
• You can flush your water to reduce potential exposure to lead from household lead plumbing. This is especially important when the water has been off and sitting in the pipes for more than 6 hours. Before drinking, flush your home’s pipes by running the tap, taking a shower, doing laundry, or doing a load of dishes.  Drink or cook only with water that comes out of the tap cold. Water that comes out of the tap warm or hot can have higher levels of lead. Boiling this water will not reduce the amount of lead in your water.
• You can virtually eliminate your exposure to lead in water by drinking or using only bottled water that has been certified by an independent testing organization.external icon This may not be the most cost-effective option for long-term use.”

I’d had no idea how lead in the water affects advanced CKD patients. Did you?

Until next week,

Keep living your life!

Chronic Kidney Disease Changed My Life

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Food!

This was meant to be last week’s blog… until Lori Hartwell of RSNHope gifted us with a guest blog, that is. No way I was going to pass that goody up. Since I’m the scheduler as well as the writer, it was easy to change what would be posted when. But a promise is a promise. So, today we talk about chronic kidney disease cookbooks and food preparation sites. 

Photo by Lisa Fotios on Pexels.com

What better place to start than the National Kidney Foundation? They make life easy by dividing their information into different categories. This is from their website: 

“Kidney disease stages 1-4   

How a healthy diet to [sic] help prevent the progression of kidney disease.   

Dialysis   

Most patients on dialysis need to limit the amount of sodium, potassium, and phosphorus in their diets.   

Transplant   

After a kidney transplant, your diet will still be an important part of maintaining your overall health.   

Kidney Stones   

If you have had kidney stones, you may need to follow a special diet to prevent kidney stones coming back.”  

Not only do you find different diets and reasons for eating that way for each condition, but there is a ‘find a renal dietitian’ link. You can also enter a search for recipes by using the search function in the upper right-hand corner of any of their pages. 

How about the American Kidney Foundation? Have you tried their Kidney Kitchen yet? They had 657 CKD friendly recipes at last count. If you click ‘Find Recipes’ on their home page, this is what will pop up: 

“Difficulty Levels Nutrients Meal Types Dietary Requirements Collection” 

Each of these has a detailed dropdown menu. For example, should you choose ‘Meal Types,’ you’d have a choice of ‘Lunch, Dinner, Sides, Breakfast, Dessert, Snacks, Drinks, or Condiments.’ Now that’s convenient. 

The American Association of Kidney Patients (AAKP) has some delicious menus you can download. For instance,  

“Overnight Oats 

No-Crust Quiche with Leeks 

Basmati Summer Salad 

Zesty Chickpea Stew 

Hamburger New Style 

Pineapple Beef Stir-fry 

Garlic Shrimp Linguini 

Summer Chicken Breast 

Fine Fish Stew 

Pear and Ginger Upside Down Cake 

Dutch Apple Soufflé 

Tropical Mocktail” 

These recipes are from their AAKP Delicious! sixth edition. You can order recipe cards and even some select issues of earlier AAKP Delicious! editions. 

I see that dialysis centers such as DaVita and Fresenius have recipes available for those on dialysis. DaVita even has downloadable cookbooks, while Fresenius has 320 downloadable recipes. I must say my mouth is starting to water from reading all these luscious recipes. 

Let’s take a look at hold-in-your-hands cookbooks for those who are not interested in downloading and/or printing recipes. My favorite is still Renal Diet Cookbook for the Newly Diagnosed: The Complete Guide to Managing Kidney Disease and Avoiding Dialysis by Susan Zogheib MHS RD LDN, probably for her meatballs alone. Although we did enjoy the other recipes we tried from this book. This is the book description on Amazon: 

“Your new kidney-friendly diet made easy with meal plans and flavorful recipes 

When you’ve just been diagnosed with stage 1-4 chronic kidney disease, learning to follow diet restrictions can be a challenge. But your meals don’t have to be complicated or boring to support your health and slow the disease’s progression. Keep it simple and flavorful with the Renal Diet Cookbook for the Newly Diagnosed. This practical cookbook equips you with essential info, 4 weekly meal plans, and 100 easy, kidney-healthy recipes to kick-start your renal diet. 

Find out how kidney disease works, and learn how diet plays a key role in keeping you healthy and avoiding dialysis. Explore at-a-glance food charts to help you regulate nutrients like sodium, potassium, phosphorus, and protein. All of the book’s recipes include nutrition facts, and many can be made in 30 minutes or less―accommodating your busy schedule and helping keep your kidney-friendly diet stress-free. 

The Renal Diet Cookbook for the Newly Diagnosed includes: 

100+ Satisfying recipes―Enjoy Buckwheat Pancakes, Creamy Broccoli Soup, Lemon Garlic Halibut, Meatloaf with Mushroom Gravy, Strawberry Pie, and much more. 

4 Weekly meal plans―Get started with four weeks of daily menus, complete with shopping lists, snack suggestions, and nutrition facts for every recipe. 

5 Steps to a renal diet―Take your new diet one step at a time in five practical stages, including specific guidance for reading food labels and controlling portions.” 

I thought a more well-known author might appeal to those of you who like already having heard about the author: 
 

“The Cooking Doc’s Kidney-Healthy Cooking: A Modern 10-Step Guide to Preventing and Managing Kidney Disease by Dr. Blake Shusterman 

Dr. Blake Shusterman is a board certified nephrologist (kidney doctor) and creator of the YouTube cooking show ‘The Cooking Doc.’ 

In this book he combines his medical knowledge, real world patient care experience and his passion for delicious food to create an easy to follow 10-step guide for preventing and managing kidney disease and a collection of meticulously tested recipes that are accessible and home cook friendly. 

If you or your family members are searching for the best dietary recommendations to manage and prevent kidney disease, this book can help set you on the right path no matter where you are in your journey. A combination of concrete health tips, scientific knowledge, inspirational stories, charts, and beautiful recipes and pictures, this book can help you understand the dietary needs for each stage of kidney disease and make you a better cook. From tweaked classics, such as Vegan Bolognese and Macaroni & Cheese, to modern and diverse fare such as Thai Shrimp Salad and Chicken Farro bowls, this book gives you more than 50 flavor packed, low sodium recipes alongside expert nutritional analysis, pro-tip sidebars, and cooking tips and techniques. 

The 10-steps: 

1. Understand Your Kidneys 

2. Choose Your Beverages Wisely 

3. Uncover Hidden Salt and #ChangeYourBuds 

4. Embrace Plant-Based Eating 

5. Get Potassium Right 

6. Avoid High Protein Pitfalls 

7. Discover Alkaline-Rich Foods 

8. Identify and Eliminate Sneaky Phosphorus 

9. Integrate the DASH, Mediterranean and Diabetic Diets into your Routine 

10. Keep an Open Mind if you Start Dialysis 

It must be lunchtime by now. I’m eager to get in the kitchen with all these recipe sources. 

Until next week, 

Keep living your life! 

Surprise!

Last week, I mentioned that this week’s blog would be about chronic kidney disease cookbooks and food preparation blogs. That’s what I’d planned at the time. But then a guest blog appeared in my mailbox. 

Lori Hartwell, the author, is one of the first people I met when I decided I wanted to become a CKD awareness advocate. She was kind enough to publish several of my articles. Recently, we met again since we were both working on the same zoom project. We talked about swapping guest blogs… and then life got in the way, as it usually does. Being a person of her word, she didn’t forget. I’ll turn this blog over to Lori now. 

***** 

Kidney Disease Diagnosis: Help is Out There 

By Lori Hartwell 

I’ve lived with kidney disease since the age of 2, back when the medical world was first learning how to treat the disease. I was not expected to live. Dialysis was in its infancy stages back in 1968, and so was I. The medical community became my world. I earned my education as a patient, while spending so much of my time in hospitals and in being the first to try a new treatment. It was a lonely start in life as I missed many childhood experiences. I spent all my teenager years on dialysis.   

Years later, after beating all odds, I started the Renal Support Network (RSN). I did it because I didn’t want others with kidney disease to feel as lonely as I once did.  I wanted to let them know if they become knowledgeable about their illness, proactive in their care they will realize there is lots of hope! 

In 1993 I started RSN as a support network for others, like myself, who live with chronic kidney disease. Peer support is important to learn how to deal with all the emotions and to navigate this illness – “One friend can make the difference.” We have expanded our programs to help people have hope and to be proactive in their care.   

As RSN’s President and Founder, it is my goal to give people living with chronic kidney disease (CKD) tools to take control of the course and management of this life-threatening illness. It’s hard to believe through our patient engagement programs we have grown to reach millions of people.  

It is important to be aware of the epidemic of kidney disease. The Center for Disease Control states that more than 15% of the adult population in the United States live with chronic kidney disease (CKD). It’s possible to have kidney disease and not know. Don’t be afraid to get tested. Kidney function can be maintained, and the progression of the disease can be slowed down if caught in the early stages. Don’t be afraid to get tested; it is a simple blood test. An ounce of prevention is worth a pound of cure.     

It is also believed that people with CKD tend to have higher levels of anxiety and depression than others. They often feel isolated because of their outward appearances which make them different than their peers. They also have different priorities in life. When others are thinking about “the big game” or which nail salon offers the best manicure, people with CKD are struggling to understand the disease and learn how to live a full life despite the fact that they have CKD.   

Help is out there! Having even one friend can really make a difference. Connect with the Renal Support Network where you’ll find a variety of national, online patient support group activities to curb the loneliness that so often affects those with CKD. Chances are you’ll find more than one friend if you make that connection. And always be careful about depression. It can sneak up on you! Read the book, “Chronically Happy – Joyful Living in Spite of Chronic Illness,” and be inspired. It is my personal story of deciding to take simple, logical steps to live a full life and realize one’s dreams.  

Perhaps you are having difficulty understanding kidney disease. Knowledge is power! Listen in to the Essentials of Chronic Kidney Disease podcast to hear Dr. Stephen Fadem, a nephrologist in Houston, Texas, speak as he sheds light on CKD. He talks about the steps you can take in collaboration with your physician to either delay the progression of your disease or, in many instances, prevent it. Many people are not even aware that they have CKD, so be sure to be tested during your annual physical. Worried about your diet? The CKD Diet – What to Know Based on New Science by Dr. Kam Kalantar will be helpful.   

Learning can be fun, and you’ll see how when you check out the animated video, “Share Your Spare.” You’ll be introduced to Neff and Nuff, the two “kidney pals” who talk about what it means to donate the “gift of life.” If you share the video with your friends and family, it may encourage them to register to become organ donors. Watch the entire animated series on our website.  

Or maybe you are one of the many people living with CKD who need help with your diet. If so, this podcast, the “What’s for Dinner” blues, is for you! There’s been talk about low-protein diets, but keep in mind that your body still needs a certain amount of protein. Adding more plant-based sources of protein may help. It’s important to talk to a renal dietitian to know what is right for you.  

I have seen the evolution of this illness for 5O plus years of living kidney disease.  Although living with CKD can be difficult, the illness is manageable, especially when you have the opportunity to learn from other people’s experiences and wisdom, so make connections!  

Visit https://www.rsnhope.org/ today, join us and hang onto hope!  

**** 

Yet again, many thanks to Lori for all she offers to those of us who suffer from CKD, just as she does. As you can see, CKD awareness advocates like to work with each other. 

Until next week,

Keep living your life!

Does Coffee Count?

We all have water guidelines. Those on dialysis need to keep it down and those who aren’t need to keep it up. For example, my nephrologist suggested 64 ounces per day. That’s the equivalent of eight glasses of eight ounces each. To be honest, I use a water bottle that has the ounces marked on it. It’s just easier. 

Photo by Ivan Samkov on Pexels.com

Yet, eight ounces is not right for everyone. The National Kidney Foundation makes several recommendations: men usually need about 13 ounces while women need nine; and using their own words: 

“A common misconception is that everyone should drink eight glasses of water per day, but since everyone is different, daily water needs will vary by person. How much water you need is based on differences in age, climate, exercise intensity, as well as states of pregnancy, breastfeeding, and illness.” 

Umm, why do we need water anyway? The Southeastern Massachusetts Dialysis Group tells us as chronic kidney disease patients [pre-dialysis also despite the group’s name], 

“Water helps your kidneys remove waste from your blood. Your body excretes these wastes and excess fluids in the form of urine that travels to your bladder before leaving your body. Water also helps keep your arteries open so that your blood can flow freely to your kidneys. This blood delivers oxygen and nutrients that help your kidneys function. Dehydration makes it more difficult for this delivery system to work. 

Mild dehydration can impair normal bodily functions, including your kidneys. Severe dehydration can actually lead to kidney damage. Drinking fluids is the best way to avoid dehydration, especially when you work or exercise especially hard or in warm or humid weather. 

People with diabetes, kidney disease or other illnesses that affect the kidneys need to take in adequate amounts of fluid to keep their kidneys performing well. People with low blood pressure need to take in plenty of fluids to maintain kidney health, for example. Your kidneys act like filters to remove toxins from your body. To push blood through the filters, though, the blood has to be moving with force; in cases of low blood pressure, there is not enough pressure to force the blood through the tiny filters of the kidneys.” 

Notice, please that the word ‘water’ has been replaced by the word ‘fluid.’ 

Hot cup of coffee by Markus Spiske is licensed under CC-CC0 1.0

But wait a minute, I drink two eight-ounce cups of black coffee most every day. Coffee is mostly water, isn’t it? Does that count in my water – or fluid – allowance? Let’s figure it out. I went to Everyday Health for this information: 

“There are so many different types of coffee to choose from, and your personal preference will affect how much hydration you’ll get from your brew. Two main factors dictate how much hydration you’ll be getting: the amount of caffeine and the volume of the beverage. For example, according to Mayo Clinic, an 8-oz cup of regular brewed coffee contains about 96 mg of caffeine while the same sized cup of decaffeinated brewed coffee contains only 2 mg of caffeine. This means, while you’ll be getting about 7 oz of hydration from the regular coffee, you’ll be getting the full 8 oz of fluid from the decaf. Caffeinated instant coffee falls somewhere in between, with 62 mg of caffeine per 8-oz serving. Similarly, a 1-oz serving of espresso contains about 64 mg of caffeine, which gives it almost as much diuretic power as a full 8 oz of caffeinated coffee, but since that’s all packed into only 1 oz of fluid, you’re really not getting any hydration from a shot of espresso.” 

Wow! That means I’m getting 14 of my 64 ounces from my favorite beverage. I only drink water and the black coffee, but if I’m ill or having stomach problems, I will eat soup. Is that a fluid, too? 

My favorite dictionary, the Merriam-Webster, defines soup for us: 

“a liquid food especially with a meat, fish, or vegetable stock as a base and often containing pieces of solid food” 

Double wow! So even if I’m not that hungry and just have a cup of soup, there’s another eight ounces or so of liquid, or as I see it being called now, hydration. So now I’ve had about 24 of my 64 ounces of liquid [no longer just water and sometimes called hydration] requirement for the day. 

Hmmm, if soup counts as a liquid and coffee counts as a liquid [tea, too], what else does? Thanks to the American Kidney Fund’s Kidney Kitchen for the following graphic: 

“Examples of fluid: 

Ice 

Soups and stews 

Pudding 

Ice cream, sherbet, sorbet, popsicles, etc. 

Protein drinks (Nepro, Novasource, Ensure, etc.) 

All beverages (water, soda, tea, coffee, milk, nondairy milk, etc.) 

Jell-O® other gelatin products and gelatin substitutes (pectin, arrowroot powder, etc.)” 

Triple wow! So, if you get tired of water, water, water [I don’t.] to fulfill your fluid or hydration needs, look at the variety of foods you can have. Of course, if you have diabetes, you’d have to get the sugar free versions of these foods… and, please, no chemical artificial sweeteners. Sort of opens up the world of fluids, doesn’t it? [Notice I’m using the word ‘fluids’ or the word ‘hydration’ instead of the word ‘water.”] 

St. Joseph’s Healthcare, Hamilton has a bit more information for us: 

“Fluid is a liquid or any food that turns into a liquid at room temperature…. Fruits and vegetables naturally contain water. If consumed in moderation, fruits and vegetables should not contribute large volumes of water to your daily total intake of fluids. Therefore, fruits and vegetables do not need to be counted as part of your daily fluid intake.” 

I prefer to stick with my water and coffee but look at all the foods that have been made available to you. My favorite treat as a child was chocolate pudding. I remember the smooth, rich creaminess of it. My brother’s was orange jello. He said it felt cool going down his throat. I’ll be content with my memories. You go enjoy these foods. 

Until next week, 

Keep living your life!  

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!  

Say It Out Loud

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

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

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

JOIN THE VIRTUAL KIDNEY STORIES TOASTMASTERS CLUB AND IMPROVE YOUR ADVOCACY  

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

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

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

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

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

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

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

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

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

Photo by Mikhail Nilov on Pexels.com

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

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

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

Until next week, 

Keep living your life! 

Black History Month and the Present

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

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

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

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

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

“Kirk Campbell, M.D. 

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

Olayiwola Ayodeji, M.D.  

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

Paul W. Crawford, M.D. 

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

Photo by William Fortunato on Pexels.com

Crystal Gadegbeku, M.D. 

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

Eddie Greene, M.D. 

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

Susanne Nicholas, M.D. 

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

Carmen Peralta, M.D. 

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

Neil Powe, M.D. 

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

Crystal Tyson, M.D. 

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

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

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

Until next week, 

Keep living your life! 

The Big House (and the Little House)

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

Photo by Ron Lach on Pexels.com

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

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

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

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

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

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

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

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

According to the Federal Bureau of Prisons, 

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Skin Deep

 Holy Cow! It’s the last day of January already. One down, 11 more to go. That’s quite a bit of time to get 2022 to be different from 2020 [As Natalie Gelman sings] and 2021. Do we ever need that to happen.  

Photo by Kampus Production on Pexels.com

For example, I had a dermatology appointment recently. Before I exited my car, I made sure my N95 was in place and hang what my hair looked up with those straps mangling it. Then, I approached the no contact thermometer. No fever. Great, now I could stand six feet away from the person in front of me waiting to check in. Once she was done, I was handed a freshly cleaned iPad upon which to check in. The waiting room was enormous… and there were exactly three people waiting. Finally, it was my turn. 

I had just enough time to start wondering what, if anything, chronic kidney disease had to do with the condition of your skin. Well, that was one good thing; due to the pandemic, there’s now a very short waiting time to see your doctor. [I’d rather go back to long waits and no pandemic.] 

One thing I remembered about CKD and your skin was that once you have a transplant, you are more vulnerable to skin cancer. In fact, a transplanted friend just when through this. Apparently, his sun hat and sun block weren’t enough. Now he uses zinc oxide on his nose, too. Come to think of it, he’s the second person I know personally who’s gone through this. 

What else? Are there other connections between CKD and your skin? Let’s find out. 

New-Medical, Life Sciences, which is based in the UK and Australia, taught me a new word and, unfortunately, a new condition: 

“Xerosis 

Xerosis is a condition that is characterized by dry and rough skin. The patient usually experiences scaling, fissures, and general discomfort. About 50-75% of dialysis patients experience this particular skin issue. The cracks that can develop in the skin increases the chance for further infection from viruses or bacteria present in the environment. 

Management of xerosis includes: 

Emollients: Moisturizers and emollients can soothe dry, scaly skin. 

Avoiding hot water and humidifiers: Too much hot water can further aggravate skin issues and cause excess drying. 

Bath oils: Bathing in natural oils can further moisturize the skin. 

Steroid cream: Medical creams can help alleviate itching.” 

I have seen this, but living in Arizona, presumed it was from too much exposure to the sun. As you can see, I learn as much as you do by writing these blogs. 

I decided to turn to some of my usual search sites. Medscape did not disappoint, although we will need a vocabulary lesson with this information.: 

“Pigmentary alteration occurs in 25-70% of the dialysis population and increases over time. A multitude of uremia-related changes are responsible for the pigmentary alterations. Before the widespread use of erythropoietin, pallor was common and was attributed to the significant anemia. A brown–to–slate-gray discoloration may occur as a result of hemosiderin deposition in association with iron overload from excessive transfusions. Over time, many patients develop a yellowish hue, which has been attributed to retained urochromes and carotene, which are subsequently deposited in the epidermis and subcutaneous tissues. A brownish hyperpigmentation is common, mostly in a sun-exposed distribution. This hyperpigmentation results from an increase in melanin production because of an increase in poorly dialyzable beta-melanocyte stimulating hormone.” 

Now for that vocabulary lesson. I bolded the words above that will be defined below. 

Hemosiderin: “Hemosiderin staining is a medical condition in which one presents yellow or brown patches on the skin. These are in fact the result of the macrophages [Gail here: these are a type of white blood cell] consuming the dead red blood cells, leading to the production of hemosiderin.” [MDDK.com] 

Urochrome: “a yellow pigment to which the color of normal urine is principally due.” [Merriam-Webster Dictionary]

Carotene: “Yellow-red pigments widely distributed in plants and animals, notably in carrots; include precursors of vitamin  A.” [Medical Dictionary for the Dental Professions]   

Beta-melanocyte stimulating hormone: “The major biological property of b-Melanocyte Stimulating Hormone is hyperpigmentation.” [InterScience Institute] 

There’s another way that CKD affects your skin. Have you heard the term pruritus? We know the suffix ‘us’ means prone to, but what about ‘prur’? ETYMOLOGEEK tells us, 

“English word pruritus comes from Proto-Indo-European *prews-, and later Latin prurio (I itch or tingle. I long for.) ”Apologies for that sidestep. Old English teachers never die, you know. Let’s get back on track.  

DermNet Az tells us that pruritus means, 

“Pruritus is the medical term for itch. Itch is an unpleasant sensation on the skin that provokes the desire to rub or scratch the area to obtain relief. Itch can cause discomfort and frustration; in severe cases it can lead to disturbed sleep, anxiety and depression. Constant scratching to obtain relief can damage the skin (excoriation, lichenification) and reduce its effectiveness as a major protective barrier.  

Pruritus is often a symptom of an underlying disease process such as a skin problem, a systemic disease, or abnormal nerve impulses.” 

CKD is a systemic disease. 

How about one more? Moon face is a term often used instead of the medical term moon facies. MedicineNet elucidates, 

“Moon face, otherwise known as moon facies, is a medical sign characterized by the face developing a rounded appearance due to fat deposits on the sides of the face. 

The most common cause of moon face is said to be associated with Cushing’s syndrome or prolonged steroid treatment (especially corticosteroids).“ 

Healthline further explains,  

“One of the most common causes of moon face is the steroid medication prednisone. Prednisone is prescribed for a variety of conditions because it helps reduce swelling and inflammation. 

You might be prescribed prednisone if you’ve had an organ transplant….” 

That includes kidney transplants. 

You know that old song,  

“Your thigh bone connected to your hip bone 
Your hip bone connected to your back bone”? 

Well, it turns out your inner organs are connected to your outer organ, too. Hey, did you know that your skin is the largest organ? 

Until next week, 

Keep living your life! 

Feeling Bookish

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week, 

Keep living your life! 

Only Two Weeks Left

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

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

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

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

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

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

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

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

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

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

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

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

“MISSION STATEMENT 

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

VISION STATEMENT 

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

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

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

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

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

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

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

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

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

Why join a CKD support group 

Joining a support group will allow you to: 

Safely share your emotions 

Hear firsthand experiences of living with the disease and its treatments 

Trade coping mechanisms 

Receive encouragement 

Feel connected, understood, and empowered” 

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

Newsfeed 

New For Me 

My Notebook 

My Topics 

Dictionary 

Suggest An Article  

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

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

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

Until next week, 

Keep living your life! 

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! 

There’s a Hole in My Head

I’m in the middle of having a root canal. The last time I had one was just about the time I was diagnosed with chronic kidney disease, a little more than 13 years ago. Since then, I’ve written about periodontal issues, dry mouth, Novocain, but not about the connection between diabetes, ckd, and dental issues. That’s what I’ll be dealing with today. 

Let’s start at the very beginning with an explanation of root canal. The American Association of Endodontists [Endodontists treat the soft tissue inside your teeth.] had an easily understood explanation: 

“Endodontic treatment can often be performed in one or two visits and involves the following steps: 

The endodontist examines and takes a radiograph of the tooth using x-rays, then administers local anesthetic. After the tooth is numb, the endodontist places a small protective sheet called a ‘dental dam’ over the area to isolate the tooth and keep it clean and free of saliva during the procedure. 

The endodontist makes an opening in the crown of the tooth. Very small instruments are used to clean the pulp from the pulp chamber and root canals and to shape the space for filling. 

After space is cleaned and shaped, the endodontist fills the root canals with a biocompatible material, usually a rubber-like material called gutta-percha. The gutta-percha is placed with an adhesive cement to ensure complete sealing of the root canals. In most cases, a temporary filling is placed to close the opening. The temporary filling will be removed by your dentist before the tooth is restored. 

After the final visit with your endodontist, you must return to your dentist to have a crown or other restoration placed on the tooth to protect and restore it to full function.” 

Photo by Evelina Zhu on Pexels.com

Got it? By the way, it really doesn’t hurt and there’s just a bit of an ache for the first day or so due to the pressure that had been exerted. At least, that’s the way it was for me. 

Now let’s see what we can find out about the kidney connection with a root canal. DaVita, a dialysis center which also educates about CKD, had just what I was looking for: 

 “Both tooth decay and gum disease can lead to infections that can cause problems for people with kidney disease and those who have diabetes…. 

Tooth decay and gum disease are caused by plaque. Plaque is a sticky film of bacteria that coats the teeth. The sugars and starches of the food you eat react with the plaque, causing it to release acids. These acids wear away the hard tooth enamel, eventually leading to cavities and tooth decay…. 

Gum disease starts when plaque accumulates and hardens over time. This hardened plaque is called tartar. Tartar settles at your gum line and can make your gums sensitive and irritated. If you notice your gums bleed after brushing your teeth, this is a symptom of gingivitis, an early stage of gum disease. Left untreated, tartar can build up to the point where the gums pull away from your teeth. This gap forms pockets that let in food and bacteria, which can cause infections. This stage of gum disease is called periodontitis…. 

A study in the Journal of Clinical Periodontology reported that people with kidney disease and those on dialysis are more likely to have periodontal disease and other oral health problems than the general population. Buildup of bacteria in the mouth can cause infection. Because people with kidney disease have weakened immune systems, they are more susceptible to infections…. 

Kidney patients are advised to tell their kidney doctor when a dental procedure is required. The doctor may recommend antibiotics be taken prior to the procedure to help guard against infection. [My endodontist prescribed them after my first treatment with him.] The dentist should be made aware that their patient has kidney disease or is on dialysis. [I told him before we started treatment that I have ckd.] Ideally, dental procedures, such as tooth extraction, should occur on a non-dialysis day for those on hemodialysis. Heparin, administered during hemodialysis, may cause some people to have extra bleeding.” 

I wanted to know how the pulp got infected in the first place. [That’s me: always asking “Why?”] I also wanted to be able to understand the answer. WebMD filled the bill: 

“A tooth’s pulp can become irritated, inflamed, and infected due to deep decay, repeated dental procedures on a tooth, large fillings, a crack or chip in the tooth, or trauma to the face.” 

Photo by Alex Green on Pexels.com

In my case, it was the large filling who knows how many years ago. So there I was with ckd, diabetes, and needing a root canal.  I knew my immune system wasn’t great and so did the endodontist; hence, the antibiotics. What I didn’t know was that dental problems could trigger other infections for those with ckd or diabetes. What I didn’t know was that this minor infection could become a major one because my immune system was weak due to the ckd and diabetes. 

Let me remind you why our immune systems are weak. I included this in SlowItDownCKD 2020: 

“So, what’s this immune system I mentioned? I turned to Medline Plus, a part of the U.S. National Library of Medicine which, in turn, is a division of the National Institutes of Health ‘Your immune system is a complex network of cells, tissues, and organs that work together to defend against germs. It helps your body to recognize these ‘foreign’ invaders. Then its job is to keep them out, or if it can’t, to find and destroy them’“  

It made more sense when I added this in the same blog, 

“According to the National Kidney Foundation, 

‘…Having kidney disease and kidney failure can weaken your immune system, making it easier for infections to take hold.  In fact, doctors and researchers have found that most infections, …, are worse in people with kidney disease.  People with a kidney transplant also have weakened immune systems.  This is because antirejection medicines (‘immunosuppressants’), which protect the body from rejecting the transplanted kidney, suppress the immune system’.” 

There you have it – the connection between CKD, diabetes, and a root canal. 

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!  

There is Help

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

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

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

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

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

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

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

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

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

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

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

The age of the recipient 

Blood type of the donor and recipient 

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

How urgent it is for the recipient to get a kidney 

How long the recipient has been waiting for a kidney 

The distance of the recipient from the donor kidney” 

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

“What is a Kidney Swap? 

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

This can also be done among three pairs.” 

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

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

Advanced age 

Severe heart disease 

Active or recently treated cancer 

Dementia or poorly controlled mental illness 

Alcohol or drug abuse” 

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

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

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

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

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

Until next week, 

Keep living your life! 

Never Heard of It Before

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

Photo by Cristian Dina on Pexels.com

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

On to the kidney part of today’s blog. 

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

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

As reported in BMC Nephrology last year:  

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

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

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

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

Photo by Pixabay on Pexels.com

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

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

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

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

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

Breaking Down the Facts on Activated Charcoal 

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

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

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

Photo by fotografierende on Pexels.com

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

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

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

The Bottom Line 

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

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

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

Until next week, 

Keep living your life! 

To Biopsy or Not to Biopsy

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

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

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

For those who don’t recognize the term: 

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

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

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

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

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

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

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

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

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

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

“A kidney biopsy may be done to: 

Diagnose a kidney problem that can’t otherwise be identified 

Help develop treatment plans based on the kidney’s condition 

Determine how quickly kidney disease is progressing 

Determine the extent of damage from kidney disease or another disease 

Evaluate how well treatment for kidney disease is working 

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

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

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

●Blood in the urine (called hematuria). … 

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

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

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

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

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

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

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

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

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

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

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

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

Now I know… and so do you. 

Until next week, 

Keep living your life! 

How Is It Done?

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

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

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

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

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

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

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

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

“Generally, a kidney transplant follows this process: 

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

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

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

A urinary catheter will be inserted into your bladder. 

• 

• 

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

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

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

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

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

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

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

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

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

The incision will be closed with stitches or surgical staples. 

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

A sterile bandage or dressing will be applied.” 

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

“Short-term complications 

Infection 

Blood clots 

Narrowing of an artery 

Arterial stenosis can cause a rise in blood pressure.  

Blocked ureter 

Urine leakage 

Acute rejection 

Long-term complications 

Immunosuppressant side effects: 

an increased risk of infections 

an increased risk of diabetes 

high blood pressure 

weight gain 

abdominal pain 

diarrhoea 

extra hair growth or hair loss 

swollen gums 

bruising or bleeding more easily 

thinning of the bones 

acne 

mood swings 

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

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

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

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

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

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

high blood pressure 

Proteinuria 

Reduced kidney function” 

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

“Medical bills 

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

Testing 

Surgery 

Hospital stay 

Follow-up care related to donation 

Personal bills 

Paid vacation and sick leave… 

Tax deductions and credits… 

Time off… 

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

Short-term disability insurance… 

FMLA (Family and Medical Leave Act) … 

NLDAC (National Living Donor Assistance Center) … 

AST (American Society of Transplantation) … 

Other 

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

Travel 

Housing 

Childcare” 

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

• 

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

Until next week, 

Keep living your life! 

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!