Not Your New Age Crystals 

I was perusing the Facebook Chronic Kidney Disease online support groups as I usually do in the morning when I ran across a post that caught my eye. The person posting wanted to know if he were going to die because he had crystals in his urine. I’d never thought about that before. He sounded really scared, so I decided to take a look at this condition.

First of all, some basic information from Study.com at https://bit.ly/34n3W6H:

“Crystals in the urine is known as crystalluria. Sometimes crystals are found in healthy people and other times they are indicators of organ dysfunction, the presence of urinary tract stones of a like composition (known as urolithiasis), or an infection in the urinary tract.”

Ummm, I wanted a bit more information so I turned to Healthline.com at https://www.healthline.com/health/urine-crystals.

“Crystals can be found in the urine of healthy individuals. They may be caused by minor issues like a slight excess of protein or vitamin C. Many types of urine crystals are relatively harmless.

In some cases, however, urine crystals can be indicators of a more serious underlying condition. Symptoms that would indicate a more serious condition could include:

  • fever
  • severe abdominal pain
  • blood in the urine
  • jaundice
  • Fatigue”

Serious conditions? What does that mean? The organ dysfunction Study.com mentioned? Which organs? Urolithiasis? An infection? Can you die from any of these?

Time to slow down. Since this is a Chronic Kidney Disease blog, let’s start with the kidneys.

“Crystal-induced acute kidney injury (AKI) is caused by the intratubular precipitation of crystals, which results in obstruction. Crystal-induced AKI most commonly occurs as a result of acute uric acid nephropathy and following the administration of drugs or toxins that are poorly soluble or have metabolites that are poorly soluble in urine …. Other drugs or medications may be metabolized to insoluble products such as oxalate (ethylene glycol, vitamin C), which are associated with precipitation of calcium oxalate crystals within tubular lumens and kidney injury.”

Thank you UptoDate.com at https://bit.ly/3j3BT0k for this information, although we’ll need some explanation in order to understand it. I get it that crystals can produce obstruction in the tubules (Wikipedia: The renal tubule is the portion of the nephron containing the tubular fluid filtered through the glomerulus), rather than being passed out of the body in the urine. It makes sense that if the crystals do produce obstruction, the urine may back up… right into the kidneys. That’s when you have the AKI. Remember, this in not chronic. The condition remains until it’s remedied, but it can be remedied.

What about urolithiasis? I must thank the National Kidney Foundation at https://www.kidney.org/atoz/content/hydronephrosis for their easily understood information about a condition called hydronephrosis which will explain how both urolithiasis and/or an infection would affect your kidneys.

“Hydronephrosis is the swelling of a kidney due to a build-up of urine. It happens when urine cannot drain out from the kidney to the bladder from a blockage or obstruction. (Gail here: such as the blockage caused by crystals which results in AKI.) Hydronephrosis can occur in one or both kidneys.

The main function of the urinary tract is to remove wastes and fluid from the body. The urinary tract has four parts: the kidneys, the ureters, the bladder and urethra. The urine is formed when the kidneys filter blood and remove excess waste materials and fluid. Urine collects into a part of the kidney called the renal pelvis. From the renal pelvis, the urine travels down a narrow tube called the ureter into the bladder. The bladder slowly fills up with urine, which empties from the body through another small tube called the urethra. Hydronephrosis occurs when there is either a blockage of the outflow of urine, or reverse flow of urine already in the bladder (called reflux) that can cause the renal pelvis to become enlarged.

Hydronephrosis may or may not cause symptoms. The main symptom is pain, either in the side and back (known as flank pain), abdomen or groin. Other symptoms can include pain during urination, other problems with urination (increased urge or frequency, incomplete urination, incontinence), nausea and fever. These symptoms depend on the cause and severity of urinary blockage.

How is Hydronephrosis Caused?
Hydronephrosis is usually caused by another underlying illness or risk factor. Causes of hydronephrosis include, but are not limited to, the following illnesses or risk factors:

  • Kidney stone
  • Congenital blockage (a defect that is present at birth)
  • Blood clot
  • Scarring of tissue (from injury or previous surgery)
  • Tumor or cancer (examples include bladder, cervical, colon, or prostate)
  • Enlarged prostate (noncancerous)
  • Pregnancy
  • Urinary tract infection (or other diseases that cause inflammation of the urinary tract)”

Kidney stones? MedicalNewsToday at https://www.medicalnewstoday.com/articles/154193 helped us out with that one:

“Kidney stones are the result of a buildup of dissolved minerals on the inner lining of the kidneys.

They usually consist of calcium oxalate but may be composed of several other compounds.

Kidney stones can grow to the size of a golf ball while maintaining a sharp, crystalline structure.

The stones may be small and pass unnoticed through the urinary tract, but they can also cause extreme pain as they leave the body.”

There is quite a bit more information about kidneys stones at this site. What we needed to know is that, again, it’s a buildup – as in not passed from the body via the urine – that causes kidney stones.

Will the person who posted the comment about crystals in his urine die, whether or not he develops symptoms? It seems to me that’s not necessary IF he seeks treatment and follows medical advice.

Back to Healthline, but this time at https://www.healthline.com/health/urine-crystals#prevention, for their take on this question:

“Urine crystals that aren’t caused by underlying conditions like liver disease or genetic conditions can often be prevented. In some cases, even crystalluria triggered by genetic causes can be reduced with lifestyle or diet changes.

The most effective way to prevent urine crystals is to drink more water and stay hydrated. This helps dilute the chemical concentrations in the urine, preventing crystals from forming.

You can also make certain changes in your diet. Your doctor can help you determine what changes to make based on the type of crystals that you have. They may recommend cutting back on protein, for example, or reducing foods high in oxalate (as is the case for calcium oxalate crystals).

Avoiding salty foods can also help prevent a number of different urine crystals, so eliminating processed foods can be beneficial.”

I’m going to add today’s blog to the things-I-never-knew part of my brain.

Until next week,

Keep living your life!

I’ve Been Compromised 

It’s true, and it’s not only me. It’s you, too, if you have Chronic Kidney Disease. ‘What do I mean?’ you ask. It’s your immune system that’s been compromised by your CKD. ‘HOW?’ you demand. That’s what today’s blog is going to explain.

Let’s start the usual way: at the beginning. 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 at https://medlineplus.gov/immunesystemanddisorders.html

“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.”

According to the National Kidney Foundation at https://www.kidney.org/atoz/chronic-kidney-disease-and-pneumococcal-disease-do-you-know-facts,

“…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.”

That makes sense. But exactly how does CKD compromise this system?

According to a British Society for Immunology study published in PubMed [“PubMed Central (PMC) is a free archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s National Library of Medicine (NIH/NLM),” as stated on their website. NCBI is The National Center for Biotechnology Information.] at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5904695/:

“The immune system and the kidneys are closely linked. In health the kidneys contribute to immune homeostasis, while components of the immune system mediate many acute forms of renal disease and play a central role in progression of chronic kidney disease. A dysregulated immune system can have either direct or indirect renal effects. Direct immune‐mediated kidney diseases are usually a consequence of autoantibodies directed against a constituent renal antigen, …. Indirect immune‐mediated renal disease often follows systemic autoimmunity with immune complex formation, but can also be due to uncontrolled activation of the complement pathways. Although the range of mechanisms of immune dysregulation leading to renal disease is broad, the pathways leading to injury are similar. Loss of immune homeostasis in renal disease results in perpetual immune cell recruitment and worsening damage to the kidney. Uncoordinated attempts at tissue repair, after immune‐mediated disease or non‐immune mediated injury, result in fibrosis of structures important for renal function, leading eventually to kidney failure.”

Hmmm, it seems my linking function is not working for this URL. No loss, just copy and paste the URL if you’d like to read more about the immune system and the kidneys.

There are a few medical terms in the above paragraph that you may need defined. Thank you, my all-time favorite dictionary, the Merriam-Webster, for helping us out here.

Antibodyany of a large number of proteins of high molecular weight that are produced normally by specialized B cells after stimulation by an antigen and act specifically against the antigen in an immune response, that are produced abnormally by some cancer cells, and that typically consist of four subunits including two heavy chains and two light chains

(https://www.merriam-webster.com/dictionary/antibody)

Antigenany substance (such as an immunogen or a hapten [Gail here: Bing defines this as “a small molecule which, when combined with a larger carrier such as a protein, can elicit the production of antibodies which bind specifically to it (in the free or combined state.]) foreign to the body that evokes an immune response either alone or after forming a complex with a larger molecule (such as a protein) and that is capable of binding with a product (such as an antibody or T cell) of the immune response

(https://www.merriam-webster.com/dictionary/antigen)

Autoantibodiesan antibody active against a tissue constituent of the individual producing it

(https://www.merriam-webster.com/dictionary/autoantibodies)

Fibrosisa condition marked by increase of interstitial fibrous tissue [Gail here: That’s not much help. In a word, fibrosis means scarring.]

(https://www.merriam-webster.com/dictionary/fibrosis)

Renal: of, relating to, involving, or located in the region of the kidneys

(https://www.merriam-webster.com/dictionary/renal)

Oh, boy. Now what? Can we build up our immune system? WebMD’s slide show  at https://www.webmd.com/diet/ss/slideshow-strengthen-immunity offers some ways we can. To summarize this slide show:

  1. Avoid stress.
  2. Have sex more often (I love this one.)
  3. Get a pet.
  4. Be optimistic.
  5. Build your social network
  6. Laugh more.
  7. Eat colorful fruits and vegetables. (Within your kidney diet, of course.)
  8. Consider herbs and supplements. (Check with your nephrologist first.)
  9. Exercise.
  10. Sleep an adequate number of hours.
  11. Cut back on alcohol consumption.
  12. Stop smoking.
  13. Keep washing those hands.

Some doctors, such as  Dr. Suzanne Cassel, an immunologist at Cedars-Sinai, think we need to balance our immune systems rather than strengthen them. ” ‘You actually don’t want your immune system to be stronger, you want it to be balanced,’ Dr. Cassel says. ‘Too much of an immune response is just as bad as too little response.’

Dr. Cassel says most of the things people take to boost their immune system, such as vitamins or supplements, don’t have any effect on your immune response.”

Obviously, all doctors don’t agree. Whether you want to balance your immune system or strengthen it, the suggestions above will be helpful. Notice whether or not we’re in the middle of a pandemic, washing your hands frequently can help your immune system. Most of the suggestions from WebMD may be surprising to you since they are lifestyle changes and/or are the same ones suggested in general for CKD patients. There’s got to be something to them if they can both help with your CKD and your immune system. Why not try the suggestions you’re not already adhering to?

By the way, to the reader who asked why chocolate is not good for CKD patients, it’s loaded with potassium. In addition, many CKD patients also have diabetes. The sugar content in chocolate is not going to do them any good.

Until next week,

Keep living your life!

It’s Time  

Time for what, you ask. Time to talk about Covid-19 and your kidneys. I don’t really want to, and maybe you don’t, either. But this is a pandemic, so we must. Better to know than play ostrich.

By the way, my favorite dictionary, the Merriam Webster at https://www.merriam-webster.com/dictionary/pandemic defines pandemic this way:

pandemic  adjective(Entry 1 of 2)

occurring over a wide geographic area and affecting an exceptionally high proportion of the population 

…..

pandemic noun (Entry 2 of 2)

an outbreak of a disease that occurs over a wide geographic area and affects an exceptionally high proportion of the populationa pandemic outbreak of a disease”

So much is unknown about the current pandemic, but it does look like Covid-19 lends itself to AKI (Acute Kidney Injury).

Let’s go back to this 1918 flu and see if we can find any kidney involvement there. I did, sort of. This study was published by Craig Garthwaite of the Department of Economics at the University of Maryland: The Effect of In-Utero Conditions on Long Term Health: Evidence from the 1918 Spanish Flu Pandemic. It deals with children of mothers who were pregnant during the 1918 Pandemic. You can find it at https://www.kellogg.northwestern.edu/faculty/garthwaite/htm/fetal_stress_garthwaite_053008.pdf.

“Depending on the period of fetal development during which exposure occurred, individuals have a higher probability of developing coronary heart disease, diabetes, kidney disorders, or being in poor health…. When flu exposure is defined using particular quarters of birth, however, there is an approximately 23 percent increase in the probability of developing diabetes for individuals exposed to the flu during the first months of pregnancy.”

Diabetes is the number one cause of Chronic Kidney Disease (CKD). CKD is a kidney disorder.

Did you know that there were three other pandemics between the one in 1918 and today’s? I didn’t. According to the Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/flu/pandemic-resources/basics/past-pandemics.html, they are

1957-1958 Pandemic (H2N2 virus) “The estimated number of deaths was 1.1 million worldwide and 116,000 in the United States.”

1968 Pandemic (H3N2 virus) “The estimated number of deaths was 1 million worldwide and about 100,000 in the United States.”

2009 H1N1 Pandemic (H1N1pdm09 virus) “… 12,469 deaths … in the United States…. Additionally, CDC estimated that 151,700-575,400 people worldwide died … during the first year the virus circulated.”

While these may seem like scary numbers, as of this past Saturday (and we know these numbers change daily), the World Health Organization (WHO) posted the following numbers:

“Total (new cases in last 24 hours)

Globally 12 322 395 cases (219 983) 556 335 deaths (5 286)”

You can check more data from WHO at https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200711-covid-19-sitrep-173.pdf?sfvrsn=949920b4_2.

The United States statistics?

“Coronavirus Cases:

3,355,646

Deaths:

137,403”

This is according to Worldometers at https://www.worldometers.info/coronavirus/country/us/.

It’s clear the pandemic is not done with us yet. People speak of the second wave coming. I live in Arizona and believe we are still in the first wave. I have no scientific proof for my belief, but our numbers keep going up without ever having gone down.

The National Kidney Foundation at https://www.kidney.org/coronavirus/covid-19-information#can-covid-19-cause-kidney-failure-otherwise-healthy-adults gives us the insight we need into Covid-19 and our kidneys:

“Initial reports from Wuhan found approximately 3% to 9% of hospitalized patients with confirmed COVID-19 developed an AKI. Incidence rates have now increased to 15% of hospitalized patients and 20% and higher in ICU patients with many requiring dialysis treatments. AKI appears to be a marker of COVID-19 infection severity and the mortality rate is higher for these patients.

Various COVID-19-related effects that are thought to contribute to AKI include kidney tubular injury (acute tubular necrosis) with septic shock, microinflammation, increased blood clotting, and probable direct infection of the kidney. Most patients with COVID-19-related AKI who recover continue to have low kidney function after discharge from the hospital.”

As usual, we need to back up a little here. AKI in not CKD (Here we are back in alphabet city.), although it may lead to CKD. While it may raise the death rate of Covid-19 patients, not all Intensive Care Unit (ICU) patients and those with Covid-19 but not in the ICU develop AKI.

Acute tubular necrosis may be a new term for you. Healthline at https://www.healthline.com/health/acute-tubular-necrosis explains it for lay folks like you and me:

“Inside your kidneys are small tube-shaped structures that remove salt, excess fluids, and waste products from your blood. When these tubules are damaged or destroyed, you develop acute tubular necrosis (ATN), a type of acute kidney injury. The damage may result in acute kidney failure.”

This past weekend I received this invitation from the American Association of Kidney Patients (AAKP) and George Washington University which you may find useful for yourself:

“Over the course of the past three months, you’ve joined AAKP and some of our allied experts in one of our nine COVID-19 webinars.

(Gail here: Go to their webinars. They’re a good way to read more about Covid-19 and your kidneys.)

We’re now pleased to invite you to pre-register to join our 2nd Annual Global Summit entitled, Global Kidney Innovations – Expanding Patient Choices & Outcomes, hosted in partnership with the George Washington University School of Medicine and Health Sciences.

This year’s summit focuses on the impact of COVID-19 on kidneys and kidney patients (Gail again: I purposely italicized that part of this sentence.) as well as key innovations in kidney care. All registration fees have been dropped to allow the broadest possible audience of frontline medical professionals, researchers, and kidney patients.

Join us for immediate access to key insights related to COVID-19 and risks to kidney patients! Beyond COVID-19, the agenda focuses on emerging innovation and research to care for kidney diseases, including diversity in clinical trials; precision medicine; genetic conditions such as APOL1; emerging research in the areas of early disease diagnosis and artificial intelligence; novel therapies in transplantation including wearable and artificial implantable devices; and advancements in home dialysis care.

Virtual Summit Event Dates: July 16-17, 2020

If you’re interested in this timely, free summit to learn more about your kidneys and Covid-19 – and/or for any of the other topics – you can register at https://aakp.org/programs-and-events/2nd-annual-global-summit-global-kidney-innovations-expanding-patient-choices-outcomes/.

Until next week,

Keep living your life!

How Sweet It Isn’t

Hello again. Last week when I was writing about Bipolar Disorder and Chronic Kidney Disease, I mentioned nephrogenic diabetes insipidus. During the week I realized how little I know about that.

Let’s start by going back and reviewing what I wrote last week:

“What is nephrogenic diabetes insipidus?
The most common problem from taking lithium is a form of diabetes due to kidney damage called nephrogenic diabetes insipidus. This type of diabetes is different than diabetes mellitus caused by high blood sugar. In nephrogenic diabetes insipidus, the kidneys cannot respond to anti-diuretic hormone (ADH), a chemical messenger that controls fluid balance. This results in greater than normal urine out-put and excessive thirst. It can be hard to treat nephrogenic diabetes insipidus.”

Frankly, that’s not enough information for me, although it’s pretty clear. Former English teacher here. Let’s take a look at the words themselves. Keep in mind, this is what I learned along the years.

Nephro = kidneys

Genic = Beginning in

So we know this disease begins in the kidneys. And diabetes? According to Michigan State University at https://www.canr.msu.edu/news/how_diabetes_got_its_name,

“The ancient Greek word for diabetes means, ‘passing though; a large discharge of urine.’ The meaning is associated with frequent urination, which is a symptom of diabetes.”

And finally insipidus. I found myself turning to Wikipedia at https://en.wikipedia.org/wiki/Diabetes_insipidus#:~:text=”Insipidus”%20comes%20from%20Latin%20language,or%20zest%3B%20not%20tasty for help with this.

” ‘Insipidus’ comes from Latin language insipidus (tasteless), from Latin: in- ‘not’ + sapidus ‘tasty’ from sapere ‘have a taste’ — the full meaning is ‘lacking flavor or zest; not tasty’.”

This one I didn’t quite get. Back to the above link to figure out what tasteless has to do with this disease.

“Application of this name to DI arose from the fact that diabetes insipidus does not cause glycosuria (excretion of glucose into the urine).”

Ah, so the urine is not sweet. Reminder: Diabetes can be diagnosed by the doctor tasting the urine. While this was more common in the 1600s, I have read about doctors tasting urine for diabetes more recently and even currently. If the urine is sweet, diabetes is present.

This is interesting. I’d never considered a form of diabetes that didn’t deal with blood glucose, which may also be called blood sugar, so sweet. Of course, I then began to wonder if taking lithium was the only way to develop this disease. The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/diabetes-insipidus/symptoms-causes/syc-20351269#:~:text=Nephrogenic%20diabetes%20insipidus%20occurs%20when,or%20a%20chronic%20kidney%20disorder was quite a bit of help here:

“Nephrogenic diabetes insipidus occurs when there’s a defect in the kidney tubules — the structures in your kidneys that cause water to be excreted or reabsorbed. This defect makes your kidneys unable to properly respond to ADH.

The defect may be due to an inherited (genetic) disorder or a chronic kidney disorder. Certain drugs, such as lithium or antiviral medications such as foscarnet (Foscavir), also can cause nephrogenic diabetes insipidus.”

This is a lot of new information to understand unless we get more help. Let’s take a look at kidney tubules now. I turned to my old favorite Healthline at https://www.healthline.com/health/human-body-maps/kidney#nephrons and found the following:

“Each tubule has several parts:

  • Proximal convoluted tubule. This section absorbs water, sodium, and glucose back into the blood.
  • Loop of Henle. This section further absorbs potassium, chloride, and sodium into the blood.
  • Distal convoluted tubule. This section absorbs more sodium into the blood and takes in potassium and acid.

By the time fluid reaches the end of the tubule, it’s diluted and filled with urea. Urea is byproduct of protein metabolism that’s released in urine.”

That makes sense, but what about this ADH? What is that?  My Health Alberta Ca at https://myhealth.alberta.ca/Health/pages/conditions.aspx?hwid=hw211268 tells us:

“Antidiuretic hormone (ADH) is a chemical produced in the brain that causes the kidneys to release less water, decreasing the amount of urine produced. A high ADH level causes the body to produce less urine. A low level results in greater urine production.

Normally, the amount of ADH in the body is higher during the night. This helps prevent urination while you are sleeping. But if the levels of ADH remain low during the night, the body will produce large amounts of urine, so urination during the night is more likely.”

We know how you can develop nephrogenic diabetes insipidus, but how do you treat it once you’ve been diagnosed? WebMD at https://www.webmd.com/diabetes/guide/nephrogenic-diabetes-insipidus-symptoms-causes-and-treatments offers us the following:

“If a drug like lithium is responsible, switching medicines might improve nephrogenic diabetes insipidus.

Most adults with nephrogenic diabetes insipidus are able to keep up with fluid losses by drinking water. For some people, though, the symptoms of near-constant thirst and urination can become intolerable. Some treatments can reduce the symptoms of nephrogenic diabetes insipidus, at least somewhat:

All adults and children with nephrogenic diabetes insipidus should take frequent bathroom breaks. This helps to avoid over-distending the bladder, which can cause long-term problems, though rarely.

The most important treatment for nephrogenic diabetes insipidus is to ensure constant access to lots of water. Not keeping up with fluid losses can lead to dehydration or electrolyte imbalances, which can sometimes be severe. Seek medical help if symptoms don’t improve after rehydrating, eating fresh fruit, and taking a multivitamin.”

Now, the biggie…. Is this rare disease curable? Unfortunately it isn’t, although,

“For individuals with acquired NDI treating the underlying cause (e.g., correcting metabolic imbalances or discontinuing drug use) can reverse the kidneys resistance to vasopressin. [Gail here again: Vasopressin is another name for ADH as far as I can tell.] However, this reversal may take weeks. In some cases caused by the use of drugs such as lithium, it may take years for the kidneys to respond to vasopressin again or it can become irreversible.”

Thank you to National Organization for Rare Diseases (NORD) at https://rarediseases.org/rare-diseases/nephrogenic-diabetes-insipidus/ for the above information.

I feel like I’ve been down the rabbit hole with Alice with all this new information about a rare disease that your already existing kidney disease may cause. Hopefully, you won’t be one of its victims.

Until next week,

Keep living your life!

A Different Kind of App  

Periodically for the last decade, I’ve written about apps that could help us manage our Chronic Kidney Disease. They would be those with electrolyte counters, portion counters, GFR calculators, and even calorie counters or exercise counters. They were helpful. Some still exist; some have gone by the wayside.

In recent years, I’ve been vocal about the necessity for CKD patients to understand what our disease is, how it came to be, and what we might do about it. This is different from wanting people to be aware of CKD. My contention is that the educated patient is the one most able to help him or herself.

Responsum for CKD does just that, but I’ll let them explain their app themselves. This is from their April 28th blog at https://responsumhealth.com/great-news-for-the-ckd-community/.

“I have great news to share with Responsum Health’s extended family of supporters and everyone around the world whose lives are affected by kidney disease. Responsum Health, with support from Otsuka Pharmaceutical, is launching a new platform and app designed specifically for people with kidney disease, including chronic kidney disease (CKD)—a condition that affects 37 million Americans.

Responsum for CKD represents our company’s second disease-specific platform—the first being Responsum for PF—and includes some amazing new features. These include a translation function into seven languages and a dynamic social wall called Community Chat, which automatically suggests articles and resources based upon each comment or entry. Just like with pulmonary fibrosis, Responsum for CKD will be available as a free web-based platform and a mobile app for iOS and Android.

We’ve recruited an all-star Content Advisory Council made up of some of the top specialists in CKD to serve as our content validators. Instead of partnering with a specific patient advocacy group to vet our content, we chose this approach to ensure that the platform is free of commercial bias. We will roll out the names of our esteemed council alongside the app launch.

To the CKD community, Responsum Health is on the way! We can’t wait to serve you, join you, learn from you, and listen to you.

Let’s get started!

Andy Rosenberg
Founder and CEO, Responsum Health

Perhaps we could use a bit more information. Let’s try their May 5th press release at https://responsumhealth.com/press-and-media/responsum-health-launches-innovative-kidney-disease-information-platform/.

“Responsum Health Launches Innovative Kidney Disease Information Platform
New technology supports patients, families, caregivers, and healthcare professionals

​[WASHINGTON, D.C., May 28 2020] — Today, Responsum Health (Responsum), an innovative developer of personalized patient apps and chronic disease knowledge communities, with support from Otsuka Pharmaceutical, a global healthcare company, announced the launch of an online connection and knowledge platform for patients with kidney disease, such as chronic kidney disease (CKD), a condition that affects an estimated 37 million Americans. The platform, called Responsum for CKD, can be accessed for free via web browser or mobile app.

Designed to meet the needs of patients, families, caregivers, and healthcare professionals, Responsum for CKD offers a number of informational and community-oriented features. At its core, Responsum replaces unreliable web aggregators and social sites by providing patients and caregivers with a customized Newsfeed that has easy-to-read summaries of important kidney health news items. All of the information found on Responsum’s platforms is written by professional health writers and vetted by a team of researchers under the guidance of an advisory council, which is made up of leading kidney health experts.

Other features include a moderated social wall to serve as a community chat room and the Patient One-Sheet, which allows patients to easily collect, download, print, and share their key medical information. Patients will also have access to a robust collection of trusted patient support links.

“We are grateful that Otsuka is willing to support our mission to educate, support, and empower patients with chronic conditions through our unique approach to providing patients with the information they need to drive better outcomes,” said Andrew Rosenberg, founder of Responsum Health. “By working with recognized leaders from the patient advocacy community, we have created a trusted online platform that fills a vital information gap—while simultaneously creating an authentic, welcoming online community for people with kidney disease.”

About Responsum Health

Responsum Health’s mission is to build and support online knowledge communities for chronic disease patients. The company offers a free, revolutionary patient engagement platform that monitors, searches, and curates the Internet to generate a personalized news feed of article summaries, which are vetted by Responsum’s patient group partners. Responsum wraps the news feed into a comprehensive platform that enables patients to comment on and rate the articles, as well as share them with their professional care team and loved ones. Responsum also enables patients to better organize their health information, find local patient support groups and services, and support one another through a moderated, disease-specific social wall.”

The one thing that has been missing from other CKD apps is the education. I write to help people become aware of CKD and maybe understand a little bit of what affects you as a CKD patient. Responsum has articles in real time, so to speak. What I mean by that is if you’re interested in potassium and ask a question in the community about it, you also have articles attached that will explain more about your topic: no searching, no delay, just click on the upper right hand corner. How marvelous.

I think I’ve mentioned that I’ve been involved in what we used to call think tanks about what CKD patients need. My answer has always been education… and what could be better than immediate education? The one sheet with your medical information is also a boon, but not specific to only this app.

But the community with instant articles about your topic? Priceless. I would say that it’s free is also priceless, but that’s a little bit obvious. Do I recommend this app? Yes. Do I use this app? Yes… and if asked my opinion, I would say you should use it, too. The key to our kidney health just may be self-education.

Until next week,

Keep living your life!

Echo… Echo… Echo…

Remember that golden time I’ve mentioned before? The time when I problem solve and write in my head just as I’m waking up? Well, today the word was echo at that time. Echo? As in echo chamber? Echo Canyon? No, doesn’t feel right. Got it! Echocardiogram.

The English teacher in me is already delighted. Why? I know what most of the word means through my college study of Greek and Latin roots. Card means heart, io is simply a connective, and gram means write. What about echo you ask? I think we all know what that means in common usage, but in conjunction with cardiogram? Yep, time for some help.

The Merriam-Webster Dictionary, still my favorite, at https://www.merriam-webster.com/dictionary/ echocardiography tells us an echocardiogram is,

“the use of ultrasound to examine the structure and functioning of the heart for abnormalities and disease”

Let’s put in a little reminder of what an ultrasound is here. This is from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5897:

“A test in which high-frequency sound waves (ultrasound) are bounced off tissues and the echoes are converted into a picture (sonogram).”

Oh, like the picture of my grandson growing in his mom’s womb. Great, now what does this have to do with Chronic Kidney Disease? I just had an echocardiogram because my oncologist was concerned about the great distance between my diastolic (lower) and systolic (upper) numbers on my blood pressure readings. It was fine, but it did get me to thinking about what CKD and the heart have in common.

Here’s a reminder from Healthline at https://www.healthline.com/health/diastole-vs-systole#:~:text=Your%20systolic%20blood%20pressure%20is,bottom%20number%20on%20your%20reading of what the two numbers mean:

“Your systolic blood pressure is the top number on your reading. It measures the force of blood against your artery walls while your ventricles — the lower two chambers of your heart — squeeze, pushing blood out to the rest of your body.

Your diastolic blood pressure is the bottom number on your reading. It measures the force of blood against your artery walls as your heart relaxes and the ventricles are allowed to refill with blood. Diastole — this period of time when your heart relaxes between beats — is also the time that your coronary artery is able to supply blood to your heart.”

Got it. This next quote is a little medicalese, but basically it’s saying there are specific difficulties if you have both CKD and high blood pressure. It’s from Kidney International at https://www.kidney-international.org/article/S0085-2538(19)30276-5/fulltext :

“In CKD and ESKD, risk factors for HF include long-standing hypertension with often worsened blood pressure (BP) control as CKD worsens, salt and water retention causing excessive preload, and cardiomyopathic factors including left ventricular (LV) hypertrophy and fibrosis. In addition, there are CKD- and ESKD-specific factors that affect afterload (increased arterial stiffness and high output shunting through arteriovenous fistulae or grafts) as well as load-independent factors (neurohormonal activation, impaired iron utilization, anemia, demand ischemia, profibrotic factors [e.g., fibroblast growth factor 23 {FGF-23}], inflammation, etc.)…. Arteriovenous fistulae or grafts have been reported to worsen right ventricular hypertrophy, increase pulmonary pressures, associate with significant right ventricular dilatation, and reduce right ventricular function, which are closely linked to survival….”

An echocardiogram can show in real time if all the ventricles of your heart are working correctly as far as pumping blood and and/or leaking when your heart should be at rest.

Well, why get an echocardiogram if you already know you have CKD and high blood pressure? Here’s WebMD at https://www.webmd.com/heart-disease/guide/diagnosing-echocardiogram#4’s response.  You can find much more information there, too, as is true of all the sites mentioned.

“An echocardiogram can help your doctor diagnose several kinds of heart problems, including:

  • An enlarged heart or thick ventricles (the lower chambers)
  • Weakened heart muscles
  • Problems with your heart valves
  • Heart defects that you’ve had since birth
  • Blood clots or tumors”

Mayo Clinic at https://www.mayoclinic.org/tests-procedures/echocardiogram/about/pac-20393856 offers an easily understandable explanation of the actual process. There are many types of echocardiograms, but this is the most usual.

Transthoracic echocardiogram

In this standard type of echocardiogram:

  • A technician (sonographer) spreads gel on a device (transducer).
  • The sonographer presses the transducer firmly against your skin, aiming an ultrasound beam through your chest to your heart.
  • The transducer records the sound wave echoes from your heart.
  • A computer converts the echoes into moving images on a monitor.”

This is yet another reminder of why we need to have both the heart and kidneys functioning well. This one is from Heart.org at https://www.heart.org/en/health-topics/high-blood-pressure/health-threats-from-high-blood-pressure/how-high-blood-pressure-can-lead-to-kidney-damage-or-failure#:~:text=The%20:

  • Damaged kidney arteries do not filter blood well. Kidneys have small, finger-like nephrons that filter your blood. Each nephron receives its blood supply through tiny hair-like capillaries, the smallest of all blood vessels. When the arteries become damaged, the nephrons do not receive the essential oxygen and nutrients — and the kidneys lose their ability to filter blood and regulate the fluid, hormones, acids and salts in the body.
  • Damaged kidneys fail to regulate blood pressure. Healthy kidneys produce a hormone called aldosterone to help the body regulate blood pressure. Kidney damage and uncontrolled high blood pressure each contribute to a negative spiral. As more arteries become blocked and stop functioning, the kidneys eventually fail.”

The American Journal of Kidney Disease at https://www.ajkd.org/article/S0272-6386(18)30598-5/fulltext gives us these final words on why an echocardiogram could be necessary for certain CKD patients:

“Abnormal cardiac structure and function are common in chronic kidney disease (CKD) and end-stage renal disease (ESRD) and linked with mortality and heart failure.”

Topic change: We tried Flavis’s high protein spaghetti and found it just as light and delightful as their penne. This, I can endorse.

Oh, before I forget. I like to read… a lot. One of the books I read recently was Ray Flynt’s Transplanted Death. I don’t want to tell you too much about it, except that it is a well-written murder mystery with a good story that revolves around transplant recipients, two of them kidney recipients. I am recommending this book.

Until next week,

Keep living your life!

Two or More

Time for another reader question, but first, let’s pay attention to what day today is. Many people see today as the day for bar-b-ques or backyard ball games (or, at least, they did before Covid 19). When I married Bear a little more than seven years ago, he explained about Memorial Day. I knew it was to honor those who died protecting us, but it was so much more meaningful when explained by a veteran… someone who didn’t die protecting us and lived on to meet me and marry me. So give some quiet thoughts to these men and woman today, will you?

Now, the question. This reader has both lupus like immune mediated glomerular nephritis and Wegeners vasculitis with kidney involvement. Her question is how does she handle both?  And, here I thought I had it bad with pancreatic cancer (now gone), Chronic Kidney Disease, diabetes, and a whole host of what I consider lesser diseases!

Starting slowly is a must here since I am like a fish out of water with these two diseases. According to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/granulomatosis-with-polyangiitis/symptoms-causes/syc-20351088,

”Granulomatosis with polyangiitis is an uncommon disorder that causes inflammation of the blood vessels in your nose, sinuses, throat, lungs and kidneys.

Formerly called Wegener’s granulomatosis, this condition is one of a group of blood vessel disorders called vasculitis. It slows blood flow to some of your organs. The affected tissues can develop areas of inflammation called granulomas, which can affect how these organs work.

Early diagnosis and treatment of granulomatosis with polyangiitis might lead to a full recovery. Without treatment, the condition can be fatal.”

Whoa! Not good. Let’s see how it’s treated. The Cleveland Clinic at https://my.clevelandclinic.org/health/diseases/4757-granulomatosis-with-polyangiitis-gpa-formerly-called-wegeners/management-and-treatment tells us,

“People with GPA who have critical organ system involvement are generally treated with corticosteroids [Gail here: commonly just called steroids] combined with another immunosuppressive medication such as cyclophosphamide (Cytoxan ®) or rituximab (Rituxan®). In patients who have less severe GPA, corticosteroids and methotrexate can be used initially. The goal of treatment is to stop all injury that is occurring as a result of GPA. If disease activity can be completely ‘turned off,’ this is called ‘remission.’ Once it is apparent that the disease is improving, doctors slowly reduce the corticosteroid dose and eventually hope to discontinue it completely. When cyclophosphamide is used, it is only given until the time of remission (usually around 3 to 6 months), after which time it is switched to another immunosuppressive agent, such as methotrexate, azathioprine (Imuran®), or mycophenolate mofetil (Cellcept®) to maintain remission. The treatment duration of the maintenance immunosuppressive medication may vary between individuals. In most instances, it is given for a minimum of 2 years before consideration is given to slowly reduce the dose toward discontinuation.”

Okay, got it. Now let’s take a look at lupus like immune mediated glomerular nephritis. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064 reminds us about lupus:

Lupus: A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heartlungs, kidneys, joints, and nervous system. The first symptom is a red (or dark), scaly rash on the nose and cheeks, often called a butterfly rash because of its distinctive shape. As inflammation continues, scar tissue may form, including keloid scarring in patients prone to keloid formation. The cause of lupus is unknown, although heredity, viruses, ultraviolet light, and drugs may all play a role. Lupus is more common in women than in men, and although it occurs in all ethnic groups, it is most common in people of African descent. Diagnosis is made through observation of symptoms, and through testing of the blood for signs of autoimmune activity. Early treatment is essential to prevent progression of the disease. A rheumatologist can provide treatment for lupus, and this treatment has two objectives: treating the difficult symptoms of the disease and treating the underlying autoimmune activity. It may include use of steroids [Gail here: Remember they’re used in treating this reader’s other disease, too.] and other anti-inflammatory agents, antidepressants and/or mood stabilizers, intravenous immunoglobulin, and, in cases in which lupus involves the internal organs, chemotherapy.

But our reader has lupus LIKE immune mediated glomerular nephritis, so she may need to deal with the symptoms, but not the treatment. Wikipedia at https://en.wikipedia.org/wiki/Immune-mediated_inflammatory_diseases informs us,

“An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.”

That’s as close as I could get to the definition of immune mediated.  We know that glomerular means of or about the glomerulus. Dictionary.com at https://www.dictionary.com/browse/glomerular helped me out here:

“Also called Malpighian tuft. a tuft of convoluted capillaries in the nephron of a kidney, functioning to remove certain substances from the blood before it flows into the convoluted tubule.”

And nephritis? After a decade of writing this blog, we probably all know that’s an inflammation of the nephrons.

Let’s combine the pieces to see what we get.  The nephron’s glomeruli are inflamed in the same way lupus inflames the organs. Remember that GPA also causes inflammation. (By the way, this is the perfect point in the blog to remind you I am not a doctor and have never claimed to be one.)

But how is it treated? Here’s where I admit defeat. There is quite a bit of information available on Lupus, Lupus Nephritis, and the like. But I could not find anything that includes ‘Lupus like.’

The commonality between the two diseases seems to be inflammation. But isn’t that at the root of all Chronic Kidney Disease? I admit to being surprised twice while writing this particular blog:

  • GPA was called by its older name by the doctor.
  • The dearth of treatment information for lupus like immune mediated glomerular nephritis.

Until next week,

Keep living your life!

D’immunity

I can just see your faces now. Huh? What is that? The concept makes sense, but the word doesn’t. Do you remember my mentioning that one of the joys of being a writer is that you make up words? Well, that’s one I made up right after my doctor talked with me about vitamin D and immunity. He was talking about warding off a reoccurrence of cancer, but when I started researching I found that it has to do with all immunity.

Wait a minute. Just as I keep reminding you that I’m not a doctor and never claimed to be one, it’s important you realize that when I use the word ‘research,’ I mean searching the web and whatever journals or texts I have available. I am not a researcher in the true sense of the word. My favorite dictionary, The Merriam-Webster at https://www.merriam-webster.com/dictionary/research can help us out here:

1: careful or diligent search

2: studious inquiry or examination especially investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws

3: the collecting of information about a particular subject”

(‘Er’ is a suffix that means ‘one who,’ so a researcher is one who researches.) Most of us think of a researcher as the second definition. I think of myself as the third definition.

Okay, now that’s cleared up let’s get back to the miraculous vitamin D and your immunity. ScienceDaily at https://www.sciencedaily.com/releases/2019/04/190417111440.htm tells us,

“The University of Edinburgh team focused on how vitamin D affects a mechanism in the body’s immune system — dendritic cells’ ability to activate T cells.

In healthy people, T cells play a crucial role in helping to fight infections. In people with autoimmune diseases, however, they can start to attack the body’s own tissues.

By studying cells from mice and people, the researchers found vitamin D caused dendritic cells to produce more of a molecule called CD31 on their surface and that this hindered the activation of T cells.

The team observed how CD31 prevented the two cell types from making a stable contact — an essential part of the activation process — and the resulting immune reaction was far reduced.

Researchers say the findings shed light on how vitamin D deficiency may regulate the immune system and influence susceptibility to autoimmune diseases.

The study, published in Frontiers in Immunology, was funded by the Medical Research Council, Biotechnology and Biological Sciences Research Council, Natural Environment Research Council and Wellcome.”

If you’re like me, you’ll need help with some of these terms.

Dendritic cells are:

“a branching cell of the lymph nodes, blood, and spleen that functions as a network trapping foreign protein,”

according to Dictionary.com at https://www.dictionary.com/browse/dendritic-cell.

Let’s take a look at T cells now. I was comfortable with MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=11300’s definition:

“T cell: A type of white blood cell that is of key importance to the immune system and is at the core of adaptive immunity, the system that tailors the body’s immune response to specific pathogens. The T cells are like soldiers who search out and destroy the targeted invaders.

Immature T cells (termed T-stem cells) migrate to the thymus gland in the neck, where they mature and differentiate into various types of mature T cells and become active in the immune system in response to a hormone called thymosin and other factors. T-cells that are potentially activated against the body’s own tissues are normally killed or changed (“down-regulated”) during this maturational process.”

I’m sure my doctor had been telling me about this during the course of my treatment, but last week – now that I’ve been declared cancer free – immunity became a big issue to me and I finally listened with both ears. Maybe you should, too, since we’re in the middle of the Corona Virus Pandemic.

Let’s get some more information about vitamin D and your immunity. Healthline at https://www.healthline.com/nutrition/vitamin-d-coronavirus#effect-on-immune-health gives us another view of vitamin D and the immune system:

“Vitamin D is necessary for the proper functioning of your immune system, which is your body’s first line of defense against infection and disease.

This vitamin plays a critical role in promoting immune response. It has both anti-inflammatory and immunoregulatory properties and is crucial for the activation of immune system defenses ….

Vitamin D is known to enhance the function of immune cells, including T-cells and macrophages, that protect your body against pathogens….

In fact, the vitamin is so important for immune function that low levels of vitamin D have been associated with an increased susceptibility to infection, disease, and immune-related disorders ….

For example, low vitamin D levels are associated with an increased risk of respiratory diseases, including tuberculosis, asthma, and chronic obstructive pulmonary disease (COPD), as well as viral and bacterial respiratory infections….

What’s more, vitamin D deficiency has been linked to decreased lung function, which may affect your body’s ability to fight respiratory infections….”

I caught a word or two in that explanation that we may need defined.

Vocabulary.com at https://www.vocabulary.com/dictionary/pathogen informs us that a pathogen is,

“… is a tiny living organism, such as a bacterium or virus, that makes people sick. Washing your hands frequently helps you avoid the pathogens that can make you sick.”

How about macrophages? I went to News Medical Life Sciences at for their definition.

“Macrophages are important cells of the immune system that are formed in response to an infection or accumulating damaged or dead cells. Macrophages are large, specialized cells that recognize, engulf and destroy target cells. The term macrophage is formed by the combination of the Greek terms “makro” meaning big and “phagein” meaning eat.”

This must be what my doctor was talking about re cancer.

On another note: I am 73, still undergoing chemotherapy, and have Chronic Kidney Disease. Please be kind to me and others like me by wearing your mask, even if you hate it or think it makes you look weak. You could be saving my life.

Until next week,

Keep living your life!

I Never Knew

I’ve already mentioned that I read a lot while undergoing chemotherapy for my pancreatic cancer. I don’t have the energy for much else, although I do find my energy slowly increasing day by day. Often, I come across words or terms that are new to me as I read. One such term is ‘hypertensive nephrosclerosis.’ That’s a mouthful, so let’s start slowly.

‘Hypertensive’ is not a problem since we know that hyper means,

hyper– a prefix appearing in loanwords from Greek, where it meant “over,” usually implying excess or exaggeration (hyperbole); on this model used, especially as opposed to hypo-, in the formation of compound words (hyperthyroid).”

Thank you, Dictionary.com at https://www.dictionary.com/browse/hyper-. A little reminder: a prefix is a group of letters added at the beginning of a word which changes its meaning. Aren’t you glad I was an English teacher for over forty years?

You’ve probably already figured out that ‘tensive’ has to do with some kind of tension. According to Dictionary.com again, but this time at https://www.dictionary.com/browse/tensive?s=ts, it means,

adjective

stretching or straining”

That is a sort of tension, so you’re right. Add the prefix to the root word and suffix and you get ‘hypertension.’ Maybe a little grammar lesson would help here. A suffix is a group of letters added at the end of a word that change its meaning by expressing tendency, disposition, function, connection, etc. (By the way, some of this was taken from – yep – Dictionary.com again. This time at https://www.dictionary.com/browse/-ive?s=t.) What else? Oh, yes, ‘root.’ That’s the main part of the word; in this word, it’s tens. I know, I know, you didn’t come here for a grammar lesson.

Good thing ‘nephrosclerosis’ is a compound word. We know all about ‘nephro’ since it means kidney. And ‘sclerosis?’ That means hardening. This is a good point to mention this can be fatal. A former colleague recently died of sclerosis.

So ‘nephrolsclerosis’ is a hardening of the kidneys. Let’s check that out just to be sure. According to MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=4533:

 Nephrosclerosis: A progressive disease of the kidneys that results from sclerosis (hardening) of the small blood vessels in the kidneys. Nephrosclerosis is most commonly associated with hypertension or diabetes and can lead to kidney failure.

With me so far? Just one more step, let’s add ‘hypertensive’ to ‘nephrosclerosis.’ Emedicine at https://emedicine.medscape.com/article/244342-overview tells us,

“The term hypertensive nephrosclerosis has traditionally been used to describe a clinical syndrome characterized by long-term essential hypertension, hypertensive retinopathy, left ventricular hypertrophy, minimal proteinuria, and progressive renal insufficiency. Most cases are diagnosed based solely on clinical findings….”

Okay, let’s break down the definition of what we just added together to understand this term. You already know what ‘hypertension’ and ‘proteinuria’ are from reading my blogs. If you forgot, use the click throughs in the above definition. That leaves ‘hypertensive retinopathy’ and ‘left ventricular hypertrophy’ since we also know what ‘progressive renal insufficiency’ is.

‘Hypertensive retinopathy’ is summarized by DoveMed, a new site for me whose stated mission is

“We provide reliable unbiased medical information to healthcare consumers and providers by leveraging our unique ecosystem of world class products and services.”

at https://www.dovemed.com/article-synonyms/stage-4-hypertensive-retinopathy/ in this manner:

  • “Hypertensive Retinopathy (HR) refers to abnormal changes of the retina that is located in the back of the eye, due to chronic hypertension (high blood pressure)
  • The retinal arteries are autoregulated, meaning they can control their own shape based on changes in systemic blood pressure. However, at extremely high blood pressures, such as a blood pressure of 140/110 mmHg or over, they are unable to autoregulate. This can result in retinal complications
  • Depending on the severity of the signs and symptoms, Hypertensive Retinopathy can be classified to 4 stages – stage 1, 2, 3, and 4. Stage 1 Hypertensive Retinopathy has mild signs and symptoms, whereas Stage 4 Hypertensive Retinopathy has severe signs and symptoms
  • These changes typically occur in individuals who have had very high blood pressure for several years. The signs and symptoms of Hypertensive Retinopathy may include leakage of fats from the blood vessels, retinal edema (fluid in the retina), and swelling of the optic nerves
  • Some of the complications can include lack of oxygen delivered to the retina, as well as swelling of the macula and optic nerve that can result in the vision being affected
  • The treatment typically consists of controlling systemic hypertension with medications. Prognosis is generally good for individuals with stage 1 or 2 Hypertensive Retinopathy”

That leaves ‘left ventricular hypertrophy.’ Have no fear! The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/left-ventricular-hypertrophy/symptoms-causes/syc-20374314 is here to help us out:

“Left ventricular hypertrophy is enlargement and thickening (hypertrophy) of the walls of your heart’s main pumping chamber (left ventricle).

Left ventricular hypertrophy can develop in response to some factor — such as high blood pressure or a heart condition — that causes the left ventricle to work harder. As the workload increases, the muscle tissue in the chamber wall thickens, and sometimes the size of the chamber itself also increases. The enlarged heart muscle loses elasticity and eventually may fail to pump with as much force as needed.

Left ventricular hypertrophy is more common in people who have uncontrolled high blood pressure. But no matter what your blood pressure is, developing left ventricular hypertrophy puts you at higher risk of a heart attack and stroke.

Treating high blood pressure can help ease your symptoms and may reverse left ventricular hypertrophy.”

Adding all this information together, it’s clear that hypertensive blood pressure is going to do you no good in any way. So what do we do to avoid high blood pressure? That’s right! And the CDC backs you up. Take a look at https://www.cdc.gov/bloodpressure/prevent.htm.

“Prevent High Blood Pressure

….Eat a Healthy Diet

Choose healthy meal and snack options to help you avoid high blood pressure and its complications. Be sure to eat plenty of fresh fruits and vegetables.

Talk with your health care team about eating a variety of foods rich in potassium, fiber, and protein and lower in salt (sodium) and saturated fat. For many people, making these healthy changes can help keep blood pressure low and protect against heart disease and stroke.

The DASH (Dietary Approaches to Stop Hypertension) eating plan is a healthy diet plan with a proven record of helping people lower their blood pressure….

Visit the CDC’s Nutrition, Physical Activity, and Obesity website to learn more about healthy eating and nutrition.

Keep Yourself at a Healthy Weight

Having overweight or obesity increases your risk for high blood pressure. To determine whether your weight is in a healthy range, doctors often calculate your body mass index (BMI). If you know your weight and height, you can calculate your BMI at CDC’s Assessing Your Weight website. Doctors sometimes also use waist and hip measurements to assess body fat.

Talk with your health care team about ways to reach a healthy weight, including choosing healthy foods and getting regular physical activity.

Be Physically Active

Physical activity can help keep you at a healthy weight and lower your blood pressure. The Physical Activity Guidelines for Americans recommends that adults get at least 2 hours and 30 minutes of moderate-intensity exercise, such as brisk walking or bicycling, every week. That’s about 30 minutes a day, 5 days a week. Children and adolescents should get 1 hour of physical activity every day.

Visit the website for CDC’s Division of Nutrition, Physical Activity, and Obesity to learn about ways you can be physically active.

Do Not Smoke

Smoking raises your blood pressure and puts you at higher risk for heart attack and stroke. If you do not smoke, do not start. If you do smoke, quitting will lower your risk for heart disease. Your doctor can suggest ways to help you quit.

For more information about tobacco use and quitting, see CDC’s Smoking and Tobacco Use Web site.

Limit How Much Alcohol You Drink

Do not drink too much alcohol, which can raise your blood pressure. Men should have no more than 2 alcoholic drinks per day, and women should have no more than 1 alcoholic drink per day. Visit the CDC’s Alcohol and Public Health website for more information.

Get Enough Sleep

Getting enough sleep is important to your overall health, and enough sleep is part of keeping your heart and blood vessels healthy. Not getting enough sleep on a regular basis is linked to an increased risk of heart disease, high blood pressure, and stroke…. Visit CDC’s Sleep and Sleep Disorders website for resources on how to get better sleep.”

Until next week,

Keep living your life!

Saving CKD Lives

Last week, I wrote about Covid-19 and a little about precautions explaining why we – as Chronic Kidney Disease patients – need to take extra care. A reader in Ireland was shocked that this was all we had in the way of protecting ourselves (as much as possible) from contacting the virus here in the United States. The precautions weren’t that much different than the precautions for everyone else.

There are a few things going on here. First is that we have no leadership from Mr. Trump who seems to have decided this is not his responsibility. That leaves us with the governors of each of the fifty United States and, in some cases, the mayors of individual cities in each of these states to lead us. They may have very different ideas.

There is this post I found on Facebook that exemplifies our situation in the U.S. Unfortunately, it is not attributed to anyone. I would love to give credit where credit is due.

“WE ARE NOT IN THE SAME BOAT …

I heard that we are all in the same boat, but it’s not like that. We are in the same storm, but not in the same boat. Your ship could be shipwrecked and mine might not be. Or vice versa.

For some, quarantine is optimal. A moment of reflection, of re-connection, easy in flip flops, with a cocktail or coffee. For others, this is a desperate financial & family crisis.

For some that live alone they’re facing endless loneliness. While for others it is peace, rest & time with their mother, father, sons & daughters.

With the $600 weekly increase in unemployment some are bringing in more money to their households than they were working. Others are working more hours for less money due to pay cuts or loss in sales.

Some families of 4 just received $3400 from the stimulus while other families of 4 saw $0.

Some were concerned about getting a certain candy for Easter while others were concerned if there would be enough bread, milk and eggs for the weekend.

Some want to go back to work because they don’t qualify for unemployment and are running out of money. Others want to kill those who break the quarantine.

Some are home spending 2-3 hours/day helping their child with online schooling while others are spending 2-3 hours/day to educate their children on top of a 10-12 hour workday.

Some have experienced the near death of the virus, some have already lost someone from it and some are not sure if their loved ones are going to make it. Others don’t believe this is a big deal.

Some have faith in God and expect miracles during this 2020. Others say the worst is yet to come.

So, friends, we are not in the same boat. We are going through a time when our perceptions and needs are completely different.

Each of us will emerge, in our own way, from this storm. It is very important to see beyond what is seen at first glance. Not just looking, actually seeing.

We are all on different ships during this storm experiencing a very different journey.”

Let’s take a look at the Chronic Kidney Disease boat to see what I can find out for us. I immediately went to the National Kidney Foundation at https://www.kidney.org/coronavirus/kidney-disease-covid-19. If you’ve read last week’s blog, then you already know we are more vulnerable to Covid-19 and why.

Are there special precautions that someone with kidney disease should take?

Older adults and people with kidney disease or other severe chronic medical conditions seem to be at higher risk for more serious COVID-19 illness. If you are at higher risk of getting very sick from COVID-19, you should:

  • Stock up on supplies
  • Take everyday precautions to keep space between yourself and others
  • When you go out in public, keep away from others who are sick, limit close contact
  • Wash your hands often
  • Avoid crowds as much as possible
  • During an outbreak in your area, stay home as much as possible.

Please remember that if you are on dialysis, you should not miss your treatments. Contact your clinic if you feel sick or have any questions or concerns.

If you have a kidney transplant, it is important to remember to keep taking your anti-rejection medicines, maintain good hygiene and follow the recommendations from your healthcare team. Contact your healthcare team with any questions or concerns….

Should CKD patients wear masks in public?

It is best to stay home, unless you need to attend a dialysis treatment. If you must go out in public, ask your healthcare provider if it is necessary as a CKD patient to wear a face mask since each individual case is different.

The Centers for Disease Control and Prevention (CDC) recommends face masks for those who are infected with COVID-19, have symptoms of COVID-19, or taking care of someone with COVID-19.

The CDC also recommends wearing cloth face coverings to slow the spread of COVID-19 in areas where community-based transmission is significant. These homemade cloth face coverings are not masks and do not replace the President’s Coronavirus Guidelines. (Gail here: As you can see, Trump doesn’t have much more to offer than what we already know. To be fair, this site hasn’t been updated since March 16th, over a month ago. Wait a minute! Why isn’t this site updated daily?)

Tips for using a mask include a snug but comfortable fit covering the bridge of the nose and the entire mouth. Also, be sure to be laundered [sic] the cloth mask after use each outdoor use, ideally without damage to the shape or structure of the mask. … The CDC also recommends coffee filters as an alternative. Use of any mask is in addition to practicing social distancing or at least 6 feet from others to limit coronavirus spread. All patients at high risk, such as immunosuppressed transplant recipients or people receiving dialysis should follow the directions of their clinicians regarding the type of face covering that should be used outside of a clinic setting.

When in public it is important to practice social distancing by staying 6 feet away from other people and to also avoid touching your face. Wash your hands immediately after you have been in public.”

This is still paltry information at best. Emedicine at https://www.emedicinehealth.com/script/main/art.asp?articlekey=228849 gives us just a bit more insight about patients on dialysis according to the CDC:

“The CDC (Centers for Disease Control and Prevention) guidance recommends that for medically stable patients facilities give the option of waiting in a personal vehicle or outside the facility and to be contacted by mobile phone when they are ready to be seen.

  • Dialysis facilities should have space allocated to allow patients who are ill to sit separately from other patients by at least 6 feet.
  • Patients experiencing respiratory symptoms should promptly be taken to appropriate treatment areas to reduce time in waiting areas.
  • For those with symptoms, ideally, dialysis treatment should be provided in a separate room from other patients, with the door closed.
  • If a separate room is not available, the masked patient should be treated at a corner or end-of-row station not near the main traffic flow. A separation of at least 6 feet should be maintained between masked, symptomatic patients and other patients during treatment.
  • Use of hepatitis B isolation rooms should only be considered for patients with respiratory symptoms if the patient has hepatitis B or if no patients treated at the facility have hepatitis B.

Healthcare personnel caring for patients with undiagnosed respiratory infections should further observe standard contact and droplet precautions with eye protection unless a suspected diagnosis such as tuberculosis requires airborne precautions, according to the guidance.

Precautions should include using gloves, facemasks, eye protection, and isolation gowns.”

And transplantees? I am so frustrated by the lack of more concrete information that might be more helpful than that given to non-kidney patients. UNOS (United Network for Organ Sharing) at https://optn.transplant.hrsa.gov/governance/policy-notices/ offers the following information:

COVID-19 Policy Actions Implemented

The table below contains information for actions taken to address OPTN operational issues in the COVID-19 crisis.

Policy Summary Documents & supporting resources Effective date
Policy 1.4.F: Updates to Candidate Data during 2020 COVID-19 Emergency This emergency policy will allow transplant programs to refresh candidate clinical data with data obtained through previous testing in order to maintain current waitlist priority.

This policy prevents candidates who cannot undergo routine testing due to the COVID-19 crisis from being adversely affected on the waitlist.

OPTN Policy Notice March 17, 2020
Policy 3.7.D: Applications for Modifications of Kidney Waiting Time during 2020 COVID-19 Emergency This emergency policy allows transplant programs to submit a waiting time modification application to retroactively initiate waiting time for affected candidates.

This policy prevents potential non-dialysis candidates who meet creatinine clearance or glomerular filtration rate (GFR) criteria from being disadvantaged because they cannot obtain other testing required.

OPTN Policy Notice April 3, 2020
Policy 18.1: Data Submission Requirements
Policy 18.2: Timely Collection of Data
Policy 18.5.A: Reporting Requirements after Living Kidney Donation
Policy 18.5.B: Reporting Requirements after Living Liver Donation
This emergency policy change relaxes requirements for follow-up form submission.

The intent of the policy is to prevent unnecessary exposure risk to transplant recipients and living donors, and also to alleviate data burden for centers in the midst of COVID-19 crisis.

 

Longer blog or not today – and it is much longer – I wish you all would adhere to these conditions. Are they restricting? Possibly. Are they uncomfortable? Could be. Are they lifesaving? It seems they are. Be safe.

Until next week,

Keep living your life!

Saving Lives

Last week, I promised to write about COVID-19 and Chronic Kidney Disease for today’s blog. This topic has touched me personally since one of my daughters was sent to the hospital when it was suspected she’d contacted the virus. Without the COVID-19 test, we still don’t know if she has the virus. We do know she still has the cough. Luckily, an x-ray proved her lungs were clear, so she was sent home with a Z-pack and orders to take Tylenol. No, she doesn’t have CKD, but her treatment at the hospital left me with a lot of questions for those of us who do.

Once again, I’m rushing headlong into the topic. Let’s slow down and start at the beginning. Why is it called COVID-19 anyway? According to the Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/coronavirus/2019-ncov/faq.html,

“On February 11, 2020 the World Health Organization announced an official name for the disease that is causing the 2019 novel coronavirus outbreak, first identified in Wuhan China. The new name of this disease is coronavirus disease 2019, abbreviated as COVID-19. In COVID-19, ‘CO’ stands for ‘corona,’ ‘VI’ for ‘virus,’ and ‘D’ for disease. Formerly, this disease was referred to as ‘2019 novel coronavirus’ or ‘2019-nCoV.’”

There are many types of human coronaviruses including some that commonly cause mild upper-respiratory tract illnesses. COVID-19 is a new disease, caused be [sic] a novel (or new) coronavirus that has not previously been seen in humans. The name of this disease was selected following the World Health Organization (WHO) best practice for naming of new human infectious diseases.”

I don’t know about you, but I want to know about corona viruses. How did they get that name? So I went to Dictionary.com at https://www.dictionary.com/browse/coronavirus where I hoped to find that information. This is what was there.

“any of various RNA-containing spherical viruses of the family Coronaviridae, including several that cause acute respiratory illnesses.”

To be honest, all I understood was that it “causes acute respiratory illnesses.” Like my daughter’s coughing. But why would she be given a Z-pack for that? Healthcare-Online at www.healthcare-online.org/What-Is-A-Z-Pack.html confirmed my belief that antibiotics are for bacterial infections, not viral ones. Curiouser and curiouser.

Drugs.com at https://www.drugs.com/medical-answers/antibiotics-kill-coronavirus-3534867/ had the answer.

“The World Health Organization (WHO) is very clear that antibiotics do not work against viruses, only bacteria, and yet health care providers are using antibiotics in some patients with COVID-19. This is because:

  • Patients with viral pneumonia can develop a secondary bacterial infection that may need to be treated with an antibiotic, although, this complication is reported to be uncommon early on in the course of COVID-19 pneumonia.
  • Also known as Azithromycin, a Z-pack is a medication used for treating serious and severe infections caused by bacteria. It contains macrolide antibiotic, which helps in stopping all forms of growth caused bantibiotic, although, this complication is reported to be uncommon early on in the course of COVID-19 pneumonia.If treatment is required for a secondary bacterial infection then a range of antibiotics can be used such as penicillins (ampicillin plus sulbactam [Unasyn], piperacillin plus tazobactam [Zosyn]), macrolides (azithromycin), cephalosporins (ceftriaxone [Rocephin]), aminoglycosides (tobramycin) and glycopeptides (vancomycin [Vancocin HCL]) for example. Often a combination of two different antibiotics is used.
  • Azithromycin is also thought to have antiviral and anti-inflammatory activity and may work synergistically with other antiviral treatments. In in vitro laboratory studies azithromycin has demonstrated antiviral activity against Zika virus and against rhinoviruses, which cause the common cold.”

Time to deal with CKD when you have COVID-19. I wanted to understand how CKD could make you more vulnerable to this disease. I turned to Prevention at https://www.prevention.com/health/a31245792/coronavirus-high-risk-groups/ for more information.

“People with underlying health conditions are at a higher-than-normal risk of developing severe forms of COVID-19…. When your body is already dealing with a separate health condition, it has less energy to put toward fighting an acute infection…. The CDC says these conditions include:

  • Blood disorders, such as sickle cell disease or taking blood thinners
  • Chronic kidney disease, as defined by your doctor
  • Chronic liver disease, as defined by your doctor
  • Compromised immune system, including undergoing cancer treatment such as chemotherapy or radiation, having received an organ or bone marrow transplant, or taking     high doses of corticosteroids or other immunosuppressant medications, and HIV or AIDS
  • Current or recent pregnancy in the last two weeks
  • Endocrine disorders, such as diabetes
  • Metabolic disorders
  • Heart disease
  • Lung disease, including asthma
  • Neurological and neurologic and neurodevelopment conditions”

This is definitely not a case of misery loves company. Not only do I have CKD, but I am undergoing chemotherapy. Oh, and I have diabetes. To all others in the high risk group, I’m so sorry we all belong to this particular community right now.

Hmmm, do we need to do something more than everyone else needs to do to avoid COVID-19? After spending more time than usual surfing the web, I admit I was surprised that there were no extra precautions other than those for everyone else. What are those you ask? Back to the CDC for their infograph at https://www.cdc.gov/coronavirus/2019-ncov/downloads/COVID19-What-You-Can-Do-High-Risk.pdf which makes it easy for us to understand. It also defines who is higher risk. Unfortunately, it could not be reproduced, so you’ll have to go to the website directly.

I always seem to feel better when I understand what might be a threat to me or anyone in one of my communities. The purpose of today’s blog was to help you understand so that you may also feel better. Make no mistake: This is serious. I only go out to Chemotherapy every other week. Even young, not high risk people from my dancing community are being safe. They are not going out either (unless they are essential workers). Do yourself a favor and save your life by staying in.

Until next week,

Keep living your life!

National Kidney Month is Almost Over

Welcome to the next to last day of National Kidney Month, 2020. Of course, that doesn’t mean you should stop taking care of your kidneys or spreading Chronic Kidney Disease awareness once National Kidney Month is over, but I don’t have to tell you that, do I? What I’d like to tell you about instead is the ins and outs of National Kidney Month.

In my latest book (Cancer has definitely slowed the arrival of SlowItDownCKD 2019, but soon, my friends, soon.) SlowItDownCKD 2018, I wrote:

“As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month. [Added today: Come to think of it, some readers have asked me where to get CKD ribbons. This is what this site sells among other things.]

‘National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing [sic] with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.’

That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure [Added today: This year’s theme for National Kidney Month is high blood pressure and your kidneys.] or a family history of kidney failure. There are more than 30 million Americans [Added today: 31 million this year] who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed….’

I wanted to share this quote from the American Kidney Fund with you, both as a CKD awareness advocate and a woman:

‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

‘March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.’

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

‘Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.’

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s URL assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.”

This year (2019), I noticed that The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/community-health-outreach/national-kidney-month offers us even more information during National Kidney Month:

“March is National Kidney Month, a time when communities across the country raise awareness about kidney disease. In partnership with the National Heart, Lung, and Blood Institute (NHLBI), this year’s focus is the link between high blood pressure and kidney disease.

If you have high blood pressure, you’re at risk for chronic kidney disease, a serious condition that can lead to stroke, heart attack, kidney failure, and death.

The good news is that you can help protect your kidneys by managing high blood pressure with these 6 healthy lifestyle habits.

  1. Take medications as prescribed.  Your doctor may prescribe blood pressure-lowering medications that are effective in slowing the development of kidney disease.
  2. Aim for a healthy weight. If you are overweight or obese, losing even a small amount of weight can improve blood pressure readings.
  3. Select healthier food and beverage options.  Focus on fruits and vegetables, lean meat, whole grains, and other heart-healthy foods.
  4. Try to quit smoking. If you smoke, take steps to quit.
  5. Get enough sleep. Aim for 7 to 8 hours of sleep per night.
  6. Manage stress and make physical activity part of your routine. Consider healthy stress-reducing activities and get at least 30 minutes or more of physical activity each day.

Learn more about high blood pressure and kidney disease

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook, Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease awareness.

Until next week,

Keep living your life!

Kevin Got His Preemptive Kidney Transplant

Several years ago,  I was invited to a kidney disease meeting. That’s where I first met Kevin Fowler, Principal of The Voice of the Patient, Inc. I liked listening to his ideas. Later, we walked into each other at an AAKP conference. This time I thoroughly enjoyed his company, but had quite a few questions about pre-emptive transplants. Kevin was good enough to explain his story, which answers my questions, in this guest blog during National Kidney Month. Take it away, Kevin! 

Kidney disease has always been a part of my life.  When I was growing up, my mom told me stories about her father who had suffered from Autosomal Polycystic Kidney Disease ( ADPKD), a disease which prompts the growth of cysts on the kidneys. My mom was the oldest of three sisters, and had great love and affection for my grandfather, Hubert Duvall.  I never had a chance to meet him because he died before I was born. It was the late 1950s when he was admitted to the hospital because he was not feeling well. Unknown to him, he was experiencing uremia, the inability of the kidneys to rid themselves of waste products such as urea, as he went into kidney failure. Shortly after his hospital admission he died.  As he neared death, he learned that ADPKD was the cause of his kidney failure. 

My grandfather’s patient journey had a profound impact upon his three daughters: Mary Ann, Ruth, and Laverne in that his genetic disease was passed on to each of them.  My mom, Mary Ann, was diagnosed after the birth of her third child. Imagine the joy of giving birth to a child while being diagnosed with a disease with limited scientific knowledge and a very uncertain future.  My mom and dad faced the unknown with a positive attitude, but with very little professional guidance.

As a young boy, I was very close to my mom.  I felt her unconditional love for me, and her whole life was dedicated to her three children.  As her ADPKD advanced, I saw her suffer with the disease. I saw her experience constant back pain, routine exhaustion and nausea.  All of this physical suffering was difficult to understand as a young child. Moreover, what was really difficult was the look on her face as she faced a nebulous future.

Eventually, my mom’s kidneys failed.  Unlike my grandfather, hemodialysis was available as a treatment option to sustain her life.  She started hemodialysis at the age of 48. While she approached dialysis with optimism, her future was never clear to her or our family.  I saw my mom struggle to survive on dialysis. I saw her return home from dialysis feeling exhausted and tired. I saw that when she had a rough hemodialysis session, it would take her longer to recover from the treatment.  She never bemoaned her fate, and provided us the legacy of her example.

After four and a half years on hemodialysis, my mom died at the age of 52.  Her dialysis experience left an indelible impression upon me. From that point on, I lived in fear that I would face the same fate.  I choose to never determine if I had the same disease. In many ways, it was a rational decision. Interventions were not able to slow down the progression of ADPKD.  If I were diagnosed with ADPKD, I would be penalized. I would face difficulty obtaining health and life insurance. The fear of facing the same patient journey as my mom was always hanging over my head, and I didn’t have the courage to determine if I too had ADPKD.  

I was married to my wife, Kathy, in 1995, and in less than five years we had two children.  During this time, I was being seen by a primary care physician who was aware of my ADPKD family history.  My kidney function was tested on my annual appointments, and he told me that my kidney function was fine. He stated that if I had ADPKD, there was not much that could be done to slow down the progression.  Later that same year near the Christmas season, I experienced deep flank (the side of your body between the bottom rib and the hip) pain. Initially, I attributed it to moving some furniture. The pain persisted, and because of my additional responsibilities as a husband and father, I called my primary care physician requesting an ultrasound test.  The ultrasound test would determine once and for all whether I too had ADPKD.

On a cold and sunny day in January 2001, my physician administered the ultrasound test. Watching his reaction told me all I needed to know.  At the age of 39, I was informed that I would be in kidney failure within the next three to five years. He offered to make a nephrology referral, but I declined.  Since he had not demonstrated competence managing my condition, I intuitively sensed that I could not trust his referral would serve my best interests. 

At that time, I was working in the pharmaceutical industry, so I called a physician friend at Barnes Hospital in St. Louis seeking a nephrology recommendation.  On my mother’s birthday, I met with my nephrologist – who had a profound impact on my life. He informed me that it was not necessary to be on dialysis, and that I could have a preemptive kidney transplant.  Because of my fear, I had never taken the time to learn about the different End Stage Kidney Disease treatment options. I was incredibly fortunate to receive the best treatment option.

On this recently past World Kidney Day, the theme was prevention due to detection.  In the United States approximately 90% of those with Stage 3 Chronic Kidney Disease are unaware of their condition.  This is no longer acceptable. The American Kidney Health Executive Order has initiated a public campaign to detect kidney disease earlier.  In fact, the National Kidney Foundation and CVS Kidney Care launched their public awareness campaign this month, National Kidney Month.  Unlike when I was diagnosed, there are now approved treatments to slow down the progression of kidney diseases.  There are potentially additional treatments in the pipeline for ADPKD, Diabetic Kidney Disease, FSGS, IGAN, etc. For many people there is no longer a need to live in fear.  There is a very real possibility that their patient journey may change for the better.

Thank you, Kevin, for sharing your personal kidney journey with us. Kevin may be reached via email at kevinjohnfowler@gmail.com or on Twitter as @gratefull080504.

 

Until next week,

Keep living your life!

Dax’s Journey to Dialysis Friendly Clothing

I met Dax Francis a few years ago in a Facebook CKD & Dialysis Support page. Slowly, I became aware that he produces dialysis clothing… and that fascinated me. Then it dawned on me that you should know such clothing exists, although Dax is not the only one who produces them. I asked him if he would write a guest blog explaining how this all started and where he got the idea. He promptly agreed and that will be today’s blog, the first blog in March, National Kidney Month.

Before we read Dx’s blog, some of us may need a reminder of what FSGS is. According to The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/fsgs/symptoms-causes/syc-20354693:

“Focal segmental glomerulosclerosis (FSGS) is a disease in which scar tissue develops on the parts of the kidneys that filter waste from the blood (glomeruli). FSGS can be caused by a variety of conditions.

FSGS is a serious condition that can lead to kidney failure, for which the only treatment options are dialysis or kidney transplant. Treatment options for FSGS depend on the type you have.”

I think we’re ready for Dax’s guest blog now.

My name is Dax Francis. I was diagnosed with FSGS as a young man, age twelve, and it was as if overnight school, sports, and friends were replaced with doctors, hospitals, and treatments. I struggled to find my place in this new body that could no longer do the things that had defined my life. Shortly after I graduated from high school, I had to begin dialysis which set me down a dark path of loneliness, depression, and sadness.

When I began dialysis I wanted everything to end. This was not the life I had ever wanted, and I believed that all my abilities, my skills, and talents were hidden behind a treatment filled with pain. The strength it took to live in that struggle was too much, and I put myself in situations where everything could have and should have ended. I was lost, and then I got that call saying it was my turn for a kidney transplant.

This was it! This is my moment to start my life! And then FSGS recurred shortly after surgery, and I was never able to leave treatment.

Devastation, utter devastation. I could not let my donor down though and felt a need to try to pursue my life once more despite the struggle. I enrolled in school for Social Work. I wanted to use my experiences to help those who may be in similar situations as myself, and I found my calling. Being able to help others and learn from those with wholly different lives and experiences than mine was the greatest gift I could have ever been given.

As I had all but finished the Social Work program, I realized that I could not be the social worker that people deserved due to my health. Being on treatment three times a week made it difficult to find work, and I rarely felt well enough to continually work. I struggled with this, feeling like I was never going to have a way to be a part of the world and the community nor was a place for me or anyone like me. This fact made me feel worthless and I dropped out of college 6 credits shy of my degree, because I thought it was pointless.

I wandered, confused, and didn’t know how to be someone who could make a difference. The wisdom I had gained from fighting every day to survive, I felt, was something special and I just wanted someone to ask me what I had learned while living in the struggle that is chronic illness. I just wanted someone to take notice of my fight and my struggle and see the person who can make a difference because of it all.

After the passing of a close friend I needed to live for both of us and put myself out there where I met someone who changed my life. I met someone who saw my fight and helped me realize that all I had been through made me capable of so much. She believed in me when I couldn’t believe in myself, this enabled me to live a life that I had always dreamed of, and I was doing it all despite being on dialysis. I was able to meet the love of my life despite the struggle. It all started with putting my true self out there and not being afraid of being that true person sharing with light and love.

I enrolled back in school and finished my 6 credits finally achieving my degree. During this time the world began to change. More and more negativity seemed to be seeping into my life and I found myself in a negative space despite having everything I wanted. I needed to make a change. At the end of 2017 I committed to being positive, uplifting and to helping others the way I can. I started making videos while I was actually on dialysis just to let others know that they were not alone and that they needed to continue their fight.

The support I received from those first videos inspired me to do more with my talents and abilities and Ivye Wear was born on the morning of January 13, 2018. I wanted to provide comfort, warmth, and hope to the warriors fighting every day to survive, often with little recognition of the strength it takes to survive and live in that struggle. I wanted to provide a suit of armor for the warrior when they go into battle; whether it’s dialysis, chemotherapy, infusions, or something else entirely, and I designed comfortable, accessible clothing designed for a range of medical treatments, procedures, and devices. Sweats, Hoodies, and T-Shirts designed for warriors, by warriors. All of our clothes provide zipper access to the vital areas your caregivers need to perform treatment while you can stay warm and dignified.

I never want anyone to feel as if they don’t have a place in this world due to their illness or struggle, Ivye Wear was born to be a beacon of hope for all chronic illness patients. I believe that it is our experiences that give us the strength, wisdom, and patience to change the world.

Thank you, Dax, for your honesty and especially for the dialysis clothing.

Until next week,

Keep living your life!

Just in Time

I woke up this morning thinking about Audre Lorde. She was the New York State Poet at one time and considered herself a “lesbian, mother, warrior, poet,”but more importantly to me, my writing mentor and friend… and I miss her terribly. Thinking about Audre led me to thinking about my younger daughter (Abby) who won the Black History Month Essay Contest in her elementary school several years in a row by writing about Audre’s and my friendship.

That stopped me for a moment. Audre, Abby, Black History Month. This is Black History Month and it’s half over. Time to write about Black History in Nephrology today.

As Andrea Wurtzburger wrote in People Magazine (I knew there was a reason I grabbed this first each time I waited in one medical office or another.) in the February 13, 2020 issue which was also posted at https://www.yahoo.com/entertainment/black-history-month-explained-started-175250248.html,

Black History Month is an entire month devoted to putting a spotlight on African Americans who have made contributions to our country. Originally, it was seen as a way of teaching students and young people about the contributions of Black and African Americans in school, as they had (and still have) been often forgotten or left out of the narrative of the growth of America. Now, it is seen as a celebration of those who’ve impacted not just the country, but the world with their activism and achievements.”

Now that we know what Black History Month is, let’s see how we can apply it to the field of nephrology. This is what I wrote in SlowItDownCKD 2017 (February 7th) about Dr. Kountz:

“Samuel L. Kountz, M.D was another innovative contributor to Nephrology from the Black Community. As Blackpast.org tells us:

“In 1961 Kountz and Roy Cohn, another leading surgeon, performed the first successful kidney transplant between two people who were close relatives but not twins.  Over the next decade Kountz researched the process of kidney transplants on dogs.  He discovered that monitoring blood flow into the new kidney and administering methylprednisolone to the patient after surgery allowed the body to accept the new organ.

In 1966 Kountz joined the faculty at Stanford University Hospital and Medical School and in 1967 he became the chief of the kidney transplant service at University of California at San Francisco (UCSF).  There he worked with Folker Belzer to create the Belzer kidney perfusion machine.  This innovation kept kidneys alive for 50 hours after being removed from the donor.  Through Kountz’s involvement at UCSF, the institution’s kidney transplant research center became one the best in the country.  Kountz also created the Center for Human Values at UCSF, to discuss ethical issues concerning transplants.”

Kidney News Online at https://www.kidneynews.org/careers/resources/opinion-re-establishing-trust-and-improving-outcomes-in-nephrology introduced me to someone who should be noted in Black History Month in the future since the general public needs to be aware of Chronic Kidney Disease in order to be tested and, ultimately, treated. Dr. Bignall echoes my own thoughts.

“O. N. Ray Bignall II, MD is an Assistant Professor of Pediatrics in the Division of Nephrology at Nationwide Children’s Hospital and The Ohio State University College of Medicine. He is also a member of the American Society of Nephrology’s Policy and Advocacy Committee.

‘To re-establish trust and improve outcomes, we must carry health equity from “the bedside to the curbside.” From research and discovery, to policy and advocacy, nephrologists must engage directly with community members, stakeholders, and lawmakers. Minority communities need to see nephrologists in their schools, houses of worship, block parties, and community centers. We can increase our involvement in community-based participatory research (CBPR) that engages community members in the design, study, and implementation of evidence-based discovery. Nephrologists should also be taking our message to city halls, state houses, and our nation’s Capital to promote kidney disease research and advocacy for all our patients – especially those with disparate outcomes.’ ”

I felt compelled to include Dr. Charles DeWitt Watts who, while not a nephrologist, was eminent in breaking racial barriers so we could have Black nephrologists available to us. The following is from Duke University Medical Center and Library at https://guides.mclibrary.duke.edu/BlackHistoryMonth.

“Dr. Watts spent more than 50 years advocating for civil and human rights and for the quality of medical care for all residents of Durham, especially the poor and underserved. He broke racial barriers when he pushed for certification of black medical students.

First African American to be certified by a surgical specialty board in North Carolina.

Played key role in founding Lincoln Community Health Center, a free standing clinic, which served people regardless of their ability to pay.

Joined the staff of Lincoln Hospital as Chief of Surgery in 1950. Lincoln was one of the few American hospitals at the time that granted surgical privileges to African-American physicians.

Completed his surgical training at Freedman’s Hospital in Washington, DC under the tutelage of Dr. Charles Drew.

Worked to prepare Lincoln’s interns and residents for board certification and convinced Duke University Medical School to oversee Lincoln’s training program so that students could get board certified.

Fought along with other community leaders for the creation of one integrated public health care facility, Durham Regional Hospital, built in Durham in 1967. This led to the closing of both Watts and Lincoln hospitals.

Served as Adjunct Clinical Professor of Surgery at Duke and Director of Student Health at North Carolina Central University.

Served for 28 years as Vice President and Medical Director for North Carolina Mutual Life Insurance Co., the largest African-American managed insurer in the country.

Member of the National Academy of Science’s Institute of Medicine, a fellow in the American College of Surgeons, and an active participant in the National Medical Association.”

Until next week,

Keep living your life!

Close Your Eyes…

One of the first things the oncology nurse cautioned me about was closing my eyes in the shower – except when I was washing my face. How odd, I thought. I’d been closing my eyes in the shower the entire 12 years I’d had Chronic Kidney Disease. It was just so restful.

Being who I am and doing what I do, I asked her why I needed them open. She explained kindly, but as if I were lacking in intelligence. Remember, she and I had just met. She told me that closing your eyes can impede keeping your balance and at 72 (then), the last thing I wanted was to fall and possibly break a hip.

I had been putting myself at such risk for years without knowing it. Have you?

Let’s see if we can figure out the logic, even the science behind this. According to Wikipedia at https://en.wikipedia.org/wiki/Sense_of_balance:

“The sense of balance or equilibrioception is one of the physiological senses related to balance. It helps prevent humans and animals from falling over when standing or moving. Balance is the result of a number of body systems working together: the eyes (visual system), ears (vestibular system) and the body’s sense of where it is in space (proprioception) ideally need to be intact. The vestibular system, the region of the inner ear where three semicircular canals converge, works with the visual system to keep objects in focus when the head is moving. This is called the vestibulo-ocular reflex (VOR)…. The balance system works with the visual and skeletal systems (the muscles and joints and their sensors) to maintain orientation or balance. Visual signals sent to the brain about the body’s position in relation to its surroundings are processed by the brain and compared to information from the vestibular and skeletal systems.”

While Wikipedia is a fine place to start researching when you have no idea how to research a certain subject, you need to keep in mind that anyone can edit any entry at any time… whether or not they have the credentials or knowledge to do so.

That’s a lot of information all at once. Let’s slow this down and go bit by bit. The Royal Victorian Eye and Ear Hospital at https://www.eyeandear.org.au/page/Patients/Patient_information/Balance_Disorders/How_does_the_balance_system_work/ informs us that,

“The vestibular system (inner ear balance mechanism) works with the visual system (eyes and the muscles and parts of the brain that work together to let us ‘see’) to stop objects blurring when the head moves. It also helps us maintain awareness of positioning when, for example, walking, running or riding in a vehicle. In addition, sensors in the skin, joints and muscles provide information to the brain on movement, the position of parts of the body in relation to each other, and the position of the body in relation to the environment. Using this feedback, the brain sends messages to instruct muscles to move and make the adjustments to body position that will maintain balance and coordination.”

I just counted five different parts to our ever present balancing act. Yet, I’d thought it only had to do with the inner ear and wondered why I needed to keep my eyes open in order to keep my balance. Oh my, and each of the five different parts to our ever present balancing act have several parts of their own.

Let’s take a close look at the visual system. I found this information on the blog page of the Shores of Lake Phalen (a senior living community) at https://www.theshoresoflakephalen.com/how-does-vision-affect-balance/:

“The Anatomy of the Eye

First, let’s address the anatomy of the eye. The human eye contains little nerve endings with light-sensitive cells called rods and cones. The rods and cones send signals to the brain through the optic nerve, helping the brain interpret what we see. Those images help us determine how close we are to certain objects – for example, a set of stairs. If your visual system were malfunctioning, you wouldn’t be able to tell how far you needed to raise your foot to reach the next step.”

Okay, fair enough. While this is not particularly a medical site, I like the plain English of the explanation. Now I understand why, when I open my eyes after having closed them to wash the shampoo out of my hair (Yay! I finally have hair again.), I’m not always in the position I’d thought I was.

And the vestibular system? I turned to Vestibular.org at https://vestibular.org/understanding-vestibular-disorder/human-balance-system for help with this one.

“Sensory information about motion, equilibrium, and spatial orientation is provided by the vestibular apparatus, which in each ear includes the utricle, saccule, and three semicircular canals. The utricle and saccule detect gravity (information in a vertical orientation) and linear movement. The semicircular canals, which detect rotational movement, are located at right angles to each other and are filled with a fluid called endolymph. When the head rotates in the direction sensed by a particular canal, the endolymphatic fluid within it lags behind because of inertia, and exerts pressure against the canal’s sensory receptor. The receptor then sends impulses to the brain about movement from the specific canal that is stimulated. When the vestibular organs on both sides of the head are functioning properly, they send symmetrical impulses to the brain. (Impulses originating from the right side are consistent with impulses originating from the left side.)”

But this is the one we grew up thinking was responsible for balance. As a child, I had no idea that vision was involved. Did you? Hmmm, the joints are involved, too, as is the brain. We haven’t even touched proprioception and won’t be able to for lack of room, but do click through to the word in this sentence for more information about that. It will take you back to the Wikipedia entry.

Keep those eyes open in the shower as much as possible. That may be easier now that you understand how it will help your balance.

Until next week,

Keep living your life!

Why Wait?

A few weeks ago, I received an email from Joe Russell. He works on health care policy issues for my Arizona Senator Sinema in Washington D.C., along with his colleague Sylvia Lee, policy advisor. He was letting me know both Sylvia and he would be in Arizona the following week, and holding a roundtable discussion with patients suffering from kidney disease, along with their providers, caregivers, and family members. They wanted to discuss a series of legislative proposals their office would be working on in the coming months, as well as gain a better understanding of the unique challenges patients with kidney disease face in Arizona. The National Kidney Foundation of Arizona recommended they reach out to me, given my work and experience on this topic.

Are you kidding, I thought. I’ve been trying to get someone in Arizona interested in the growth of CKD locally… and, of course, everywhere else, for over 12 years. Now, mind you, by 3:30 I’m exhausted (Damn chemo!), but I vowed to go even though it was later in the day (3 p.m.). And I did.

When I arrived, who did I see sitting at Senator Sinema’s table, but Raymond and Analyn Scott. They are the compilers of The 1 in 9 Tribe to which I had contributed a chapter. There were people from the National Kidney Foundation of Arizona, a transplant patient, my very own nephrologist (who is also Raymond’s) and Senator Sinema’s delegation.

Oh boy, I remember thinking, this is going to be good. And it was. Each person spoke to their own stage of CKD with Dr. DeSai (Raymond’s and my nephrologist) and the National Kidney Foundation of Arizona people speaking about all stages of CKD. I kept steering the discussion back to early stage treatment and awareness for all. It seemed all were in agreement with my ideas or, at least, they were interested.

But I want to let you know why I feel early intervention and general awareness are so important. This is a note I received from a reader.

”Please help. I just got blood results back from my yearly physical and saw that my eGFR was 55 and my creatinine was 1.09. After speaking to my GP she told me my results were nothing to ‘be concerned about’. Since the 2 above mentioned results were highlighted in red I figured perhaps I should ‘concern’ myself about it and research what it could possibly mean. I was shocked to read that it indicated kidney disease. When I told my doctor of my findings, she again pushed it off as nothing to worry about. Am I over reacting? Thanks for any help you can give me.”

Now we don’t know this reader’s age. That’s important because you lose one point off your Glomerular Filtration Rate every year once you hit the age of 40. For example, I turned 73 yesterday (Yes, it was a fun birthday with my family and friends despite the effects of chemo.). Subtract 40 from that and I have lost 33 points off my GFR simply by being alive and growing older. Considering the highest GFR is 120, although we usually use 100 for ease of figuring, my perfect GFR would be 87. But it’s not. It’s 55, so we know I have CKD, stage 3A just like this reader.

Nuts! I’m going on and on as if everyone reading this knew both what GFR is and the stages of CKD. Well, we’ll just correct that right now. According to MedlinePlus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health, at https://medlineplus.gov/ency/article/007305.htm.

Glomerular filtration rate

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

How the Test is Performed

blood sample is needed.

The blood sample is sent to a lab. There, the creatinine level in the blood sample is tested. Creatinine is a chemical waste product of creatine. Creatine is a chemical the body makes to supply energy, mainly to muscles.

The lab specialist combines your creatinine level with several other factors to estimate your GFR. Different formulas are used for adults and children. The formula includes some or all of the following:

  • Age
  • Blood creatinine measurement
  • Ethnicity
  • Gender
  • Height
  • Weight”

Nor do we know the reader’s ethnicity. The National Kidney Foundation at https://www.kidney.org/sites/default/files/docs/12-10-4004_abe_faqs_aboutgfrrev1b_singleb.pdf explains why this is important:

“This is due to higher average muscle mass and creatinine generation rate in African Americans.”

So, why then, is it important to know if you’re only in stage 2 of CKD? Let me put it this way:

When I was first diagnosed with CKD, I was at a GFR of 39. That’s pretty low. Had I been tested earlier, I would have had more time to preserve more of my kidney function. While I’m now at about 55 GFR (just like my reader), it took years and years of hard work as far as diet, exercise, rest, sleep, avoiding anxiety, not drinking or smoking and making sure I paid special attention to my labs.

Imagine if I had known earlier that I had CKD. I could have started protecting my kidneys earlier, which may have meant I could avoid dialysis for longer… or maybe at all. It may have meant I wouldn’t reach the place where I needed a transplant, if I ever needed one.

If you are routinely checked via a blood test and urine test each time you see your family doctor – just like your heart and lungs are checked – you may be able to avoid being told you were in need of dialysis seemingly out of the blue. But you wouldn’t know to ask for these tests unless everyone is made aware of CKD and just how prevalent it is. Think about it.

Until next week,

Keep living your life!

AKI & CKD

Aha! Dana contacted me and here’s the blog I promised him. (Still looking for the request from the woman who waited so patiently for me to recover from my surgery. Please contact me again.) Dana asked about AKI, Acute Kidney Injury, and how aggressively his nephrologist should be pursuing treatment of this. He and his nephrologist feel that his AKI may have been caused by strep.

I know I write about CKD, Chronic Kidney Disease, so what is AKI? The glossary in my very first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, tells us ‘acute’ means:

“Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.” This is what I wrote about AKI and CKD in SlowItDownCKD 2017,

“I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

‘Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease. Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times.’

Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine (Update: Now one out of seven.) in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times. I’m getting a little nervous here….

It makes sense, as researchers and doctors are beginning to see, that these are all connected. I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD (Cardiovascular Disease). Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

As with CKD, your hypertension and diabetes {if you have them.} need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.”

Dana’s nephrologist put him on a regiment of prednisone for two months. Why? Well, prednisone is an anti-inflammatory drug. WebMD at https://www.webmd.com/a-to-z-guides/what-is-acute-kidney-failure#1 offers the following as possible causes of AKI. Notice the very last one and you’ll see how prednisone may be helpful.

  1. Something is stopping blood flow to your kidneys. It could be because of:
  1. You have a condition that’s blocking urine from leaving your kidneys. This could mean:
  1. Something has directly damaged your kidneys, like:

Now we know AKI and Acute Kidney Failure are not the same thing, but it is possible that this nephrologist is using prednisone in an attempt to avoid Acute Kidney Failure.

One thing Dana asked that made me stop cold is “How do you cope with the inevitable aspects?” They are not inevitable, Dana. I am a lay person who has managed to keep my CKD at stage 3 for 11 years. I am also not a magician. What I am is someone who follows the guidelines for keeping my kidneys as healthy as possible.

You’ve already seen a nutritionist – hopefully a renal nutritionist, since a healthy diet is not necessarily a renal healthy diet – so you’re aware of the nutrition aspect of protecting your kidneys. But there’s more. Do you smoke or drink? If so, stop. Do you exercise? If not, start… but with your nephrologist’s supervision. Are you getting adequate sleep and rest? Here’s the hardest guideline: try to avoid stress. Of course, if you have a stressful life, avoiding stress can just be another stress.

As to how aggressively you should expect your nephrologist to treat your AKI (or the CKD resulting from it) really depends upon you and your nephrologist. For example, some think stage 3 is barely CKD and urge you to just keep watch. Others, like my nephrologist, take CKD seriously and have their nutritionists train you re the renal diet and speak with you themselves about the guidelines. As for AKI, again it depends on you, your nephrologist, and the severity of the AKI. Since you have waste product buildup and inflammation, you may need dialysis or a hospital stay… or watchful waiting while taking a medication such as prednisone.’

There seems to be quite a lot of leeway as to the treatment you and your nephrologist decide upon.

Until next week,

Keep living your life!

Another Kind of Kidney Disease

While I’m still recuperating, I’ve had plenty of time to read Twitter articles, among other things. One topic I’ve been reading about is lupus nephritis. I think we’ve all heard of lupus, but just in case, here’s a definition from MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=8064.

“A chronic inflammatory disease that is caused by autoimmunity. Patients with lupus have in their blood unusual antibodies that are targeted against their own body tissues. Lupus can cause disease of the skin, heart, lungs, kidneys, joints, and nervous system.”

Did you catch the mention of kidneys in the above definition? That’s where the nephritis part of the condition comes in. By now, we’re all probably tired of being reminded that ‘neph’ means relating to the kidneys (although in non-medical terms, it means relating to the clouds) and ‘itis’ means inflammation. Nuts! I just reminded you again. Let’s ignore that. So, lupus nephritis actually means

“… a kidney disorder [which] is a complication of systemic lupus erythematosus.”

Thank you to MedlinePlus at https://medlineplus.gov/ency/article/000481.htm for the definition. Oh, “systemic lupus erythematosus” refers back to autoimmune disease. Still, the word “erythematosus” puzzled me. I finally figured it out after realizing I probably wasn’t going to get a definition since almost all the entries were for lupus erythematosus. Remember, I studied Greek & Latin roots way, way back in college. It means red and is from the Greek. I get it. Sometimes, lupus patients have a red rash in butterfly form across their face.

So, how do you develop this particular kidney disease? What better place to find out than Lupus.org at https://www.lupus.org/resources/how-lupus-affects-the-renal-kidney-system#.

“Inflammation of the nephrons, the structures within the kidneys that filter the blood, is called glomerulonephritis, or nephritis. Lupus nephritis is the term used when lupus causes inflammation in your kidneys, making them unable to properly remove waste from your blood or control the amount of fluids in your body.”

Hmmm, no lupus equals no lupus nephritis. However, if you do have lupus, you may develop lupus nephritis.

Let’s say hypothetically that you or a loved one (or even your neighbor down the block) has lupus and is concerned about developing lupus nephritis. How would they know if they were developing it? I had to look no further than the National Kidney Foundation at https://www.kidney.org/atoz/content/lupus.

“Lupus nephritis can cause many signs and symptoms and may be different for everyone. Signs of lupus nephritis include:

  • Blood in the urine (hematuria): Glomerular disease can cause your glomeruli to leak blood into your urine. Your urine may look pink or light brown from blood.
  • Protein in the urine (proteinuria): Glomerular disease can cause your glomeruli to leak protein into your urine. Your urine may be foamy because of the protein.
  • Edema: Having extra fluid that your kidneys cannot remove that causes swelling in body parts like your legs, ankles, or around your eyes.
  • Weight gain: due to the fluid your body is not able to get rid of.
  • High blood pressure

I know these may also be the symptoms of Chronic Kidney Disease, but if you have lupus, then they may be symptoms of lupus nephritis. To make things even more complicated, there are five different kinds of lupus nephritis depending upon which part of the kidney is affected.

I was wondering about tests to diagnose lupus nephritis, like we have blood and urine tests to diagnose CKD. Healthline (Now do you see why I was so thrilled to receive their Best Kidney Blogs Award two years in a row?) at https://www.healthline.com/health/lupus-nephritis#diagnosis cleared that up.

Blood tests

Your doctor will look for elevated levels of waste products, such as creatinine and urea. Normally, the kidneys filter out these products.

24-hour urine collection

This test measures the kidney’s ability selectively to filter wastes. It determines how much protein appears in urine over 24 hours.

Urine tests

Urine tests measure kidney function. They identify levels of:

  • protein
  • red blood cells
  • white blood cells

Iothalamate clearance testing

This test uses a contrast dye to see if your kidneys are filtering properly.

Radioactive iothalamate is injected into your blood. Your doctor will then test how quickly it’s excreted in your urine. They may also directly test how quickly it leaves your blood. This is considered to be the most accurate test of kidney filtration speed.

Kidney biopsy

Biopsies are the most accurate and also most invasive way to diagnose kidney disease. Your doctor will insert a long needle through your abdomen and into your kidney. They’ll take a sample of kidney tissue to be analyzed for signs of damage.

Ultrasound

Ultrasounds use sound waves to create a detailed image of your kidney. Your doctor will look for anything abnormal in the size and shape of your kidney.

Yes, I know these are the same tests that are used to diagnose CKD, but if you have lupus, they also can diagnose lupus nephritis.

Okay, now the biggie: How do you treat it if you do have it? The MayoClinic at  https://www.mayoclinic.org/diseases-conditions/lupus-nephritis/diagnosis-treatment/drc-20446438 had some sobering news for us:

“There’s no cure for lupus nephritis. Treatment aims to:

  • Reduce symptoms or make symptoms disappear (remission)
  • Keep the disease from getting worse
  • Maintain remission
  • Avoid the need for dialysis or a kidney transplant

Conservative treatments

In general, doctors may recommend these treatments for people with kidney disease:

  • Diet changes. Limiting the amount of protein and salt in your diet can improve kidney function.
  • Blood pressure medications. Drugs called angiotensin-converting enzyme (ACE) inhibitors and angiotensin II receptor blockers (ARBs) can help control blood pressure. These drugs also prevent protein from leaking from the kidneys into the urine. Drugs called diuretics can help you get rid of excess fluid.

However, conservative treatment alone isn’t effective for lupus nephritis.

Immune suppressants

For severe lupus nephritis, you might take drugs that slow or stop the immune system from attacking healthy cells, such as:

  • Steroids, such as prednisone
  • Cyclosporine
  • Tacrolimus
  • Cyclophosphamide
  • Azathioprine (Imuran)
  • Mycophenolate (CellCept)
  • Rituximab (Rituxan)

When immunosuppressive therapies don’t lead to remission, clinical trials may be available for new therapies.

Treatment options for kidney failure

For people who progress to kidney failure, treatment options include:

  • Dialysis. Dialysis helps remove fluid and waste from the body, maintain the right balance of minerals in the blood, and manage blood pressure by filtering your blood through a machine.
  • Kidney transplant. You may need a new kidney from a donor if your kidneys can no longer function.”

Help! Running out of room (but we’re done anyway),

Until next week,

Keep living your life!

Is it Blood Sugar or the Pancreas?

We all know diabetes raises your risk of developing Chronic Kidney Disease. But why? What’s the mechanism behind the fact? As far as I’m concerned, it’s time to find out.

Let’s start with diabetes. The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health (NIH), which in turn is part of The U.S. Department of Health and Human Services at https://www.niddk.nih.gov/health-information/diabetes/overview/what-is-diabetes offers this explanation.

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

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

Sometimes people call diabetes ‘a touch of sugar’ or ‘borderline diabetes.’”

Having just had a tumor removed from my pancreas, I’m well aware that it produces insulin as well as digestive enzymes. Without a pancreas to produce insulin, you would need insulin injections several times a day.

I got what diabetes is, but how it causes CKD was still not clear.

Well, not until I read the following from The American Diabetes Association at https://www.diabetes.org/diabetes/complications/kidney-disease-nephropathy.

“When our bodies digest the protein we eat, the process creates waste products. In the kidneys, millions of tiny blood vessels (capillaries) with even tinier holes in them act as filters. As blood flows through the blood vessels, small molecules such as waste products squeeze through the holes. These waste products become part of the urine. Useful substances, such as protein and red blood cells, are too big to pass through the holes in the filter and stay in the blood.

Diabetes can damage this system. High levels of blood sugar make the kidneys filter too much blood. All this extra work is hard on the filters. After many years, they start to leak and useful protein is lost in the urine. Having small amounts of protein in the urine is called microalbuminuria.

When kidney disease is diagnosed early, during microalbuminuria, several treatments may keep kidney disease from getting worse. Having larger amounts of protein in the urine is called macroalbuminuria. When kidney disease is caught later during macroalbuminuria, end-stage renal disease, or ESRD, usually follows.

In time, the stress of overwork causes the kidneys to lose their filtering ability. Waste products then start to build up in the blood. Finally, the kidneys fail. This failure, ESRD, is very serious. A person with ESRD needs to have a kidney transplant or to have the blood filtered by machine (dialysis).”

Hmmm, now that we know what diabetes is and how it can cause CKD, maybe we need to look at ways to attempt to avoid diabetes.

  • Losing weight and keeping it off. Weight control is an important part of diabetes prevention. You may be able to prevent or delay diabetes by losing 5 to 10 percent of your current weight. For example, if you weigh 200 pounds, your goal would be to lose between 10 to 20 pounds. And once you lose the weight, it is important that you don’t gain it back.
  • Following a healthy eating plan. It is important to reduce the amount of calories you eat and drink each day, so you can lose weight and keep it off. To do that, your diet should include smaller portions and less fat and sugar. You should also eat a variety of foods from each food group, including plenty of whole grains, fruits, and vegetables. It’s also a good idea to limit red meat, and avoid processed meats.
  • Get regular exercise. Exercise has many health benefits, including helping you to lose weight and lower your blood sugar levels. These both lower your risk of type 2 diabetes. Try to get at least 30 minutes of physical activity 5 days a week. If you have not been active, talk with your health care professional to figure out which types of exercise are best for you. You can start slowly and work up to your goal.
  • Don’t smoke. Smoking can contribute to insulin resistance, which can lead to type 2 diabetes. If you already smoke, try to quit.
  • Talk to your health care provider to see whether there is anything else you can do to delay or to prevent type 2 diabetes. If you are at high risk, your provider may suggest that you take one of a few types of diabetes medicines.”

This is a list from NIH: National Institute of Diabetes and Digestive and Kidney Diseases posted on MedLinePlus at https://medlineplus.gov/howtopreventdiabetes.html. Notice it’s mentioned that this is for type 2 diabetes.

There are 11 different kinds of diabetes. Types 1 and 2 are the most common. WebMD at https://www.webmd.com/diabetes/guide/types-of-diabetes-mellitus#1 explains what type 1 and 2 are.

Type 1 diabetes is an autoimmune condition. It’s caused by the body attacking its own pancreas with antibodies. In people with type 1 diabetes, the damaged pancreas doesn’t make insulin…. With Type 2 diabetes, the pancreas usually produces some insulin. But either the amount produced is not enough for the body’s needs, or the body’s cells are resistant to it. Insulin resistance, or lack of sensitivity to insulin, happens primarily in fat, liver, and muscle cells.”

This is all starting to make sense.

Until next week,

Keep living your life!

HIV and CKD

Every morning, although I don’t have enough energy yet to create original posts, I peruse the Facebook Chronic Kidney Disease pages, Twitter, Instagram, and even LinkedIn for current information about CKD. I was surprised to see a post seeming to claim that Human Immunodeficiency Virus (HIV) can cause CKD. How had I never heard about this before?

As usual when I don’t know or understand something, I decided to investigate. My first stop was The National Institutes of Health at https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/26/99/hiv-and-kidney-disease.

  • “The kidneys are two fist-sized organs in the body that are located near the middle of the back on either side of the spine. The main job of the kidneys is to filter harmful waste and extra water from the blood. (We know that already.)
  • Injury or disease, including HIV infection, can damage the kidneys and lead to kidney disease.
  • High blood pressure and diabetes are the leading causes of kidney disease. In people with HIV, poorly controlled HIV infection and coinfection with the hepatitis C virus (HCV) also increase the risk of kidney disease.
  • Some HIV medicines can affect the kidneys. Health care providers carefully consider the risk of kidney damage when recommending specific HIV medicines to include in an HIV regimen.
  • Kidney disease can advance to kidney failure. The treatments for kidney failure are dialysis and a kidney transplant. Both treatments are used to treat kidney failure in people with HIV.”

Well, I knew there was a possibility of Acute Kidney Injury (AKI) leading to CKD, but HIV? What’s that? Oh, sorry, of course I’ll explain what HIV is. Actually, it’s not me doing the explaining, but the Center for Disease Control (CDC) at https://www.cdc.gov/hiv/basics/whatishiv.html.

“HIV stands for human immunodeficiency virus. It is the virus that can lead to acquired immunodeficiency syndrome or AIDS if not treated. Unlike some other viruses, the human body can’t get rid of HIV completely, even with treatment. So once you get HIV, you have it for life.

HIV attacks the body’s immune system, specifically the CD4 cells (T cells), which help the immune system fight off infections. Untreated, HIV reduces the number of CD4 cells (T cells) in the body, making the person more likely to get other infections or infection-related cancers. Over time, HIV can destroy so many of these cells that the body can’t fight off infections and disease. These opportunistic infections or cancers take advantage of a very weak immune system and signal that the person has AIDS, the last stage of HIV infection.

No effective cure currently exists, but with proper medical care, HIV can be controlled. The medicine used to treat HIV is called antiretroviral therapy or ART.  If people with HIV take ART as prescribed, their viral load (amount of HIV in their blood) can become undetectable. If it stays undetectable, they can live long, healthy lives and have effectively no risk of transmitting HIV to an HIV-negative partner through sex. Before the introduction of ART in the mid-1990s, people with HIV could progress to AIDS in just a few years. Today, someone diagnosed with HIV and treated before the disease is far advanced can live nearly as long as someone who does not have HIV.”

So, it’s not only HIV itself that can cause CKD, but also the drugs used to treat HIV.

The National Kidney Foundation at https://www.kidney.org/atoz/content/hiv-and-chronic-kidney-disease-what-you-need-know  offers some ideas about how to avoid CKD if you have HIV:

“Many people with HIV do not get kidney disease or kidney failure. Talk to your health care provider about your chances of getting kidney disease. If you have HIV, you can lower your chances by:

  • Checking your blood pressure as often as your doctor recommends and taking steps to keep it under control
  • Taking all your HIV medications as prescribed
  • Asking your doctor about HIV drugs that have a lower risk of causing kidney damage
  • Controlling your blood sugar if you have diabetes
  • Taking medicines to control your blood glucose, cholesterol, anemia, and blood pressure if your doctor orders them for you
  • Asking your doctor to test you for kidney disease at least once each year if you:
    • Have a large amount of HIV in your blood
    • Have a low level of blood cells that help fight HIV (CD4 cells)
    • Are African American, Hispanic American, Asian, Pacific Islander, or American Indian
    • Have diabetes, high blood pressure, or hepatitis C”

It seems to me that avoiding CKD if you have HIV is almost the same as taking care of your CKD if you didn’t have HIV, except for the specific HIV information.

I now understand why it’s so important to take the hepatitis C vaccine. I turned to UpToDate at https://www.uptodate.com/contents/treatment-of-chronic-hepatitis-c-virus-infection-in-the-hiv-infected-patient for further information about hepatitis C and HIV.

“The consequences of hepatitis C virus (HCV) infection in HIV-infected patients are significant and include accelerated liver disease progression, high rates of end-stage liver disease, and shortened lifespan after hepatic decompensation, in particular among those with more advanced immunodeficiency …. In the era of potent antiretroviral therapy, end-stage liver disease remains a major cause of death among HIV-infected patients who are coinfected with HCV ….”

Remember that drugs leave your body via either your liver or kidneys. If your kidneys are already compromised by HIV or the medications used to treat your HIV, you need a high functioning liver. If your liver is compromised by hepatitis C, you need high functioning kidneys. I was unable to determine just what high functioning meant as far as your kidneys or liver, so if you find out, let us know.

Please be as careful as possible to avoid HIV, and if you do have it, pay special attention to being treated for it. I’d like it if you were one of the people who is “diagnosed with HIV and treated before the disease is far advanced [so that you] can live nearly as long as someone who does not have HIV.”

Until next week,

Keep living your life!

Gee, That Smells Nice

Decades ago, when I was a newlywed and still in college, we lived on East 90th Street in New York City. The neighborhood was old; the building was old. It was old enough to have that odor, the one New Yorkers are still arguing about. One group says it’s dead rats in the walls; the other says it’s feline urine that’s built up over the years. It was pretty rank.

At that time, I was a wannabe hippie, so I did what all the wannabe hippies did. I lit incense. It was powerful and it smelled nice. Opening the windows wasn’t a helpful option since this was a dumb belle apartment and people had been throwing garbage out the windows and down into the little airspace the shape of the apartment created for over a hundred years.

They’d been throwing it out the back windows, too. Nobody wanted to walk their garbage down the five flights from where I lived. What about the front windows, you ask. If you didn’t mind car exhaust smoke or the shrills of children playing in the street, that would have been okay. I liked the sound of the children, but it didn’t help me study.

We finally figured out this was not the best place for us to live, so we moved to an apartment in Forest Hills, a neighborhood in Queens. It smelled nice there. Our three windows opened on to a courtyard belonging to the apartment building behind us. There were trees and bushes galore. But we still lit incense. By this time, my then husband was a wannabe hippie right along with me.

I moved a lot in those years: New Rochelle in Westchester, Park Slope in Brooklyn, and Stapleton Heights in Staten Island. In each new home, I lit incense more from habit than anything else.

Finally, I moved to Arizona and kept all ten windows in my home open throughout the fall, winter, and spring. But in the summer with its extreme heat, they had to be closed…. So what did I do? That’s right; I burned incense. Never once did I consider this might be some sort of health hazard.

Now I have pancreatic cancer which I know is caused by the ATM gene and, in my case, is hereditary (Stop laughing, please. That really is the name of the gene.) But I also have Chronic Kidney Disease. I got to wondering if there’s any connection between the incense burning and the fact that I have CKD. So, I decided to explore that possibility.

But first, let me tell those who may not know just what incense is. Dictionary.com at https://www.dictionary.com/browse/incense has a nice, easy definition:

  1. “an aromatic gum or other substance producing a sweet odor when burned, used in religious ceremonies, to enhance a mood, etc.
  2. the perfume or smoke arising from such a substance when burned.
  3. any pleasant perfume or fragrance.”

I popped over to The National Center for Biotechnology Information (NCBI), which is part of the
US National Library of Medicine
, which in turn is part of the National Institutes of Health, which is connected to PubMed at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6325774/. Why? Because I remembered reading something about incense on this site. I know, I know. I freely admit I have weird reading habits, but remember: I’m retired. I can indulge in anything that catches my fancy now… including reading weird, seemingly random articles. Anyway, this is what I learned from this study of daily incense burning by Chinese CKD patients in Singapore.

“Our study provides epidemiological evidence that long-term exposure to domestic incense smoke may contribute to the risk of ESRD in the general populations. We acknowledge the lack of information on kidney function at baseline as a limitation in our study, and recommend that the findings be corroborated by future studies that can demonstrate the deterioration in kidney function with time in incense users. Given the worldwide prevalence of incense burning, our finding has substantial public health implications. We advocate implementing strategies to reduce exposure to the emissions from domestic incense and educating the public about the importance of improving ventilation with the use of incense.”

This is no surprise if you’re thinking logically, but then again, who thinks about incense? Although I’ll bet you’ll be doing a little bit more thinking about it now. There are some problems here, though.

  1. I’m not Chinese.
  2. I don’t live in Singapore.
  3. I don’t burn incense on a daily basis.

Hmmm, let’s see if I can find anything else. While not specific to CKD, Healthline at https://www.healthline.com/health/is-incense-bad-for-you#bottom-line did have concerns.

“Incense has been used for thousands of years with many benefits. However, studies are showing incense can possibly pose dangers to health.

Incense isn’t officially deemed a major public health risk comparable to smoking tobacco. Correct use to minimize risks hasn’t yet been explored. Neither has the extent of its dangers been explored, since studies thus far are limited.

Reducing or limiting incense use and your exposure to the smoke may help lower your risk. Opening windows during or after use is one way to reduce exposure.

Otherwise, you can explore alternatives to incense if you’re concerned about the risks.”

I intend to open the windows the next time I use incense to cover that darned chemo smell I’m still emitting. Consider opening the windows the next time you choose to use incense, if you do.

Time for a little gratitude here. You know I’ve been dealing with pancreatic cancer since last March. During this time period, I’ve been invited to present at a conference in Tokyo, participate in both a radio show and a newspaper article, and be a member of a think tank in New Jersey. To be honest, I hadn’t realized how much physical energy I put into my CKD awareness outreach. While I had to answer, “Not this year. Please keep me in mind for next year,” I am thankful for these opportunities.

Until next week,

Keep living your life!

Sodium Bicarbonate, Anyone?

I belong to a number of social media Chronic Kidney Disease support groups. Time and time again, I’ve seen questions about sodium bicarbonate use. I never quite understood the answers to members’ questions about this. It’s been years, folks. It’s time for me to get us some answers.

My first question was, “What is it used for in conjunction with CKD?” Renal & Urology News at https://www.renalandurologynews.com/home/conference-highlights/era-edta-congress/sodium-bicarbonate-for-metabolic-acidosis-slows-ckd-progression/ had a current response to this. Actually, it’s from last June 19th.

“Sodium bicarbonate treatment of metabolic acidosis in patients with chronic kidney disease (CKD) improves renal outcomes and survival, researchers reported at the 56th European Renal Association-European Dialysis and Transplant Association Congress in Budapest, Hungary.

In a prospective open-label study, patients with CKD and metabolic acidosis who took sodium bicarbonate (SB) tablets were less likely to experience a doubling of serum creatinine (the study’s primary end point), initiate renal replacement therapy (RRT), and death than those who received standard care (SC).”

It may be current but what does it mean? Let’s start with metabolic acidosis. Medline Plus, part of the U.S. National Library of Medicine which, in turn, is part of the National Institutes of Health at https://medlineplus.gov/ency/article/000335.htm explains it this way:

“Metabolic acidosis is a condition in which there is too much acid in the body fluids.”

But why is there “too much acid in the body fluid?”

I like the simply stated reason I found at Healthline (https://www.healthline.com/health/acidosis), the same site that deemed SlowItDownCKD among the Best Six Kidney Disease Blogs for 2016 and 2017.

“When your body fluids contain too much acid, it’s known as acidosis. Acidosis occurs when your kidneys and lungs can’t keep your body’s pH in balance. Many of the body’s processes produce acid. Your lungs and kidneys can usually compensate for slight pH imbalances, but problems with these organs can lead to excess acid accumulating in your body.”

In case you’ve forgotten, pH is the measure of how acid or alkaline your body is. So, it seems that when the kidneys (for one organ) don’t function well, you may end up with acidosis. Did you know the kidneys played a part in preventing metabolic acidosis? I didn’t.

I went to MedicalNewsToday at https://www.medicalnewstoday.com/articles/263834.php in an attempt to find out if metabolic syndrome has any symptoms. By the way, AHA refers to the American Heart Association.

“According to the AHA, a doctor will often consider metabolic syndrome if a person has at least three of the following five symptoms:

  1. Central, visceral, abdominal obesity, specifically, a waist size of more than 40 inches in men and more than 35 inches in women
  2. Fasting blood glucose levels of 100 mg/dL or above
  3. Blood pressure of 130/85 mm/Hg or above
  4. Blood triglycerides levels of 150 mg/dL or higher
  5. High-density lipoprotein (HDL) cholesterol levels of 40 mg/dL or less for men and 50 mg/dL or less for women

Having three or more of these factors signifies a higher risk of cardiovascular diseases, such as heart attack or stroke, and type 2 diabetes.”

Well! Now we’re not just talking kidney (and lung) involvement, but possibly the heart and diabetes involvement. Who knew?

Of course, we want to prevent this, but how can we do that?

“You can’t always prevent metabolic acidosis, but there are things you can do to lessen the chance of it happening.

Drink plenty of water and non-alcoholic fluids. Your pee should be clear or pale yellow.

Limit alcohol. It can increase acid buildup. It can also dehydrate you.

Manage your diabetes, if you have it.

Follow directions when you take your medications.”

Thank you to WebMD at https://www.webmd.com/a-to-z-guides/what-is-metabolic-acidosis#2  for the above information.

Let’s say – hypothetically, of course – that you were one of the unlucky CKD patients to develop metabolic acidosis. How could you treat it?

I went directly to the National Kidney Foundation at https://www.kidney.org/atoz/content/metabolic-acidosis to find out. This is what they had to say:

“We all need bicarbonate (a form of carbon dioxide) in our blood. Low bicarbonate levels in the blood are a sign of metabolic acidosis.  It is a base, the opposite of acid, and can balance acid. It keeps our blood from becoming too acidic. Healthy kidneys help keep your bicarbonate levels in balance.  Low bicarbonate levels (less than 22 mmol/l) can also cause your kidney disease to get worse.   A small group of studies have shown that treatment with sodium bicarbonate or sodium citrate pills can help keep kidney disease from getting worse. However, you should not take sodium bicarbonate or sodium citrate pills unless your healthcare provider recommends it.”

I’m becoming a wee bit nervous now and I’d like to know when metabolic acidosis should start being treated if you, as a CKD (CKF) patient do develop it. Biomed at http://www.biomed.cas.cz/physiolres/pdf/prepress/1128.pdf reassured me a bit.

“Acid–base disorder is commonly observed in the course of CKF. Metabolic acidosis is noted in a majority of patients when GFR decreases to less than 20% to 25% of normal. The degree of acidosis approximately correlates with the severity of CKF and usually is more severe at a lower GFR…. Acidosis resulting from advanced renal insufficiency is called uremic acidosis. The level of GFR at which uremic acidosis develops varies depending on a multiplicity of factors. Endogenous acid production is an important factor, which in turn depends on the diet. Ingestion of vegetables and fruits results in net production of alkali, and therefore increased ingestion of these foods will tend to delay the appearance of metabolic acidosis in chronic renal failure. Diuretic therapy and hypokalemia, which tend to stimulate ammonia production, may delay the development of acidosis. The etiology of the renal disease also plays a role. In predominantly tubulointerstitial renal diseases, acidosis tends to develop earlier in the course of renal insufficiency than in predominantly glomerular diseases. In general, metabolic acidosis is rare when the GFR is greater than 25–20 ml/min (Oh et al. 2004).”

At least I understand why the sodium bicarbonate and I realize it’s not for me… yet.

Until next week,

Keep living your life!

Get the Lead Out

In case you haven’t heard yet, my youngest and her husband are having a little boy at the end of the month. I’ve noticed that, as millennials, their generation shares what they already have instead of running out to buy new as my generation – the baby boomers – did. One thing that was shared with them was a 16 year old crib in ace condition.

I thought it was painted white and got nervous about lead in the paint until I did a little digging. Luckily, the anti-lead paint laws came into existence 41 years ago in 1978.

Then I started to wonder what sustained lead exposure could do to someone with Chronic Kidney Disease and turned to one of my favorite sites to find out. According to the National Kidney Foundation at https://www.kidney.org/atoz/content/lead-exposure-and-kidney-function,

“Having too much lead in your body can affect all the organs in your body, including the kidneys. When it affects your kidneys, medical experts call it ‘lead-related nephrotoxicity.’  (‘Nephro’ refers to your kidneys, and ‘toxicity’ refers to poison.’) Kidney damage from lead exposure is very uncommon in the United States.  In fact, most experts believe that kidney damage from lead is rare nowadays, especially in the United States and Europe.

It’s believed that lead exposure causes less than 1% of all cases of kidney failure.  It is usually related to jobs where workers are exposed to very high levels of lead, such as stained glass artists, metal smelters, and people who work in battery factories or remodel old homes. The low levels of lead found in drinking water, house paint, dirt, dust, or toys rarely causes kidney damage.

But if it does happen, it is usually only after many years of lead exposure (5 to 30 years).  Also, it is more likely to affect people who are already at risk for kidney disease, or those who already have kidney disease. In children, however, even mild exposure over many years can lead to health effects later in life, including kidney damage.”

Let’s say (Heaven forbid!) that you were among the “less than 1% of all cases of kidney failure” caused by lead exposure. How would you even know you had lead poisoning? The National Institute for Occupational Safety and Health (NIOSH), part of the Centers for Disease Control and Prevention (CDC) at  https://www.cdc.gov/niosh/topics/lead/health.html had an answer ready for us.

“Lead poisoning can happen if a person is exposed to very high levels of lead over a short period of time. When this happens, a person may feel:

  • Abdominal pain
  • Constipated
  • Tired
  • Headachy
  • Irritable
  • Loss of appetite
  • Memory loss
  • Pain or tingling in the hands and/or feet
  • Weak

Because these symptoms may occur slowly or may be caused by other things, lead poisoning can be easily overlooked. Exposure to high levels of lead may cause anemia, weakness, and kidney and brain damage. Very high lead exposure can cause death.

Lead can cross the placental barrier, which means pregnant women who are exposed to lead also expose their unborn child. Lead can damage a developing baby’s nervous system. Even low-level lead exposures in developing babies have been found to affect behavior and intelligence. Lead exposure can cause miscarriage, stillbirths, and infertility (in both men and women).

Generally, lead affects children more than it does adults. Children tend to show signs of severe lead toxicity at lower levels than adults. Lead poisoning has occurred in children whose parent(s) accidentally brought home lead dust on their clothing. Neurological effects and mental retardation have also occurred in children whose parent(s) may have job-related lead exposure.…”

Did you catch the mention of kidney disease? Now what? How is lead poisoning treated? Let’s see what another favorite site of mine, The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/lead-poisoning/diagnosis-treatment/drc-20354723   has to say:

“The first step in treating lead poisoning is to remove the source of the contamination. If you can’t remove lead from your environment, you might be able to reduce the likelihood that it will cause problems. For instance, sometimes it’s better to seal in rather than remove old lead paint. Your local health department can recommend ways to identify and reduce lead in your home and community. For children and adults with relatively low lead levels, simply avoiding exposure to lead might be enough to reduce blood lead levels.

Treating higher levels For more-severe cases, your doctor might recommend:

  • Chelation therapy. In this treatment, a medication given by mouth binds with the lead so that it’s excreted in urine. Chelation therapy might be recommended for children with a blood level of 45 mcg/dL or greater and adults with high blood levels of lead or symptoms of lead poisoning.
  • EDTA chelation therapy. Doctors treat adults with lead levels greater than 45 mcg/dL of blood and children who can’t tolerate the drug used in conventional chelation therapy most commonly with a chemical called calcium disodium ethylenediaminetetraacetic acid (EDTA). EDTA is given by injection.”

Is that safe for your kidneys? Uh-oh, according to WebMD at https://www.webmd.com/balance/guide/what-is-chelation-therapy, it may not be.

“When chelation therapy is used the right way and for the right reason, it can be safe. The most common side effect is burning in the area where you get the IV. You might also experience fever, headache, and nausea or vomiting. Chelating drugs can bind to and remove some metals your body needs, like calcium, copper, and zinc. This can lead to a deficiency in these important substances. Some people who’ve had chelation therapy also have low calcium levels in the blood and kidney damage.”

It looks like this is another case when you’ll have to present the information to your nephrologist and see what he or she advises in your particular case. If it’s a primary care doctor who is treating you for lead poisoning, be certain to tell him or her that you CKD.

Until next week,

Keep living your life!

It’s Like the Sahara in There

I like my dentist, especially when he tells me something I didn’t know. When I went to see him last time, I told him my chemo experience and how dry my mouth was. I thought they might be related. He patiently gave me the same information as the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/dry-mouth/symptoms-causes/syc-20356048.

“Dry mouth, or xerostomia (zeer-o-STOE-me-uh), refers to a condition in which the salivary glands in your mouth don’t make enough saliva to keep your mouth wet. Dry mouth is often due to the side effect of certain medications or aging issues or as a result of radiation therapy for cancer. Less often, dry mouth may be caused by a condition that directly affects the salivary glands.

Saliva helps prevent tooth decay by neutralizing acids produced by bacteria, limiting bacterial growth and washing away food particles. Saliva also enhances your ability to taste and makes it easier to chew and swallow. In addition, enzymes in saliva aid in digestion.

Decreased saliva and dry mouth can range from being merely a nuisance to something that has a major impact on your general health and the health of your teeth and gums, as well as your appetite and enjoyment of food.

Treatment for dry mouth depends on the cause.”

The joke’s on me. I developed dry mouth before the radiation treatments began. At least my salivary glands weren’t having any issues of their own. It seems we discussed xerostomia at the right time.

Wait a minute. Something is pulling on my memory. Something about Chronic Kidney Disease and dry mouth. Of course, periodontics and CKD. The Journal Of Clinical Periodontology at https://onlinelibrary.wiley.com/action/doSearch?AllField=chronic+kidney+disease&SeriesKey=1600051x had just what I was trying to remember. By the way, this is a fascinating free online library by John Wiley, a publisher I remember well from when I worked as an educator.

“Periodontitis had significant direct effect, and indirect effect through diabetes, on the incidence of CKD. Awareness about systemic morbidities from periodontitis should be emphasized.”

In other words, if you have CKD or diabetes, make certain your dentist knows so he or she can monitor you for the beginning of periodontic problems. Just as with any other medical issue, the sooner you start treatment, the better. I can attest to this since I caught my pancreatic cancer early, which gave me a much better chance of eradicating it from my body.

The treatment for dry mouth seems simple enough, as explained by Healthline (Thank you again for the two awards!) at https://www.healthline.com/symptom/dry-mouth.

“Dry mouth is usually a temporary and treatable condition. In most cases, you can prevent and relieve symptoms of dry mouth by doing one or more of the following:

  • sipping water often
  • sucking on ice cubes
  • avoiding alcohol, caffeine, and tobacco
  • limiting your salt and sugar intake
  • using a humidifier in your bedroom when you sleep
  • taking over-the-counter saliva substitutes
  • chewing sugarless gum or sucking on sugarless hard candy
  • over- the-counter toothpastes, rinses, and mints

If your dry mouth is caused by an underlying health condition, you may require additional treatment. Ask your doctor for more information about your specific condition, treatment options, and long-term outlook.”

The sugarless gum works well for me and, as an added benefit, quelled the nausea from the radiation treatments, too. While I don’t drink or smoke, I will have an occasional half cup of coffee when I can tolerate it. I didn’t know this was something to be avoided. As both a CKD patient and a type 2 diabetic (Thanks, pancreatic cancer.), I was already avoiding salt and sugar. So, without realizing it, I was already helping myself deal with dry mouth. Lucky me.

That got me to thinking. What other problems could dry mouth cause? I went to NHS Inform at https://www.nhsinform.scot/illnesses-and-conditions/mouth/dry-mouth to look for an answer. Indeed, this is a Scottish website, but a mouth is a mouth no matter where it’s located, right?

  • “a burning sensation or soreness in your mouth
  • dry lips
  • bad breath (halitosis)
  • a decreased or altered sense of taste
  • recurrent mouth infections, such as oral thrush
  • tooth decay and gum disease
  • difficulty speaking, eating or swallowing”

On a personal note, I found the halitosis embarrassing and the altered sense of taste frustrating. And here, I’d been blaming the chemo for that. Maybe it was the chemo, although my age could also be the cause of my dry mouth. I do admit that 72 could be considered “aging.” My husband orders the groceries and we now have a pantry full of food I used to love but all taste, well, funny now. Poor guy, he was just trying to get me to eat when he ordered the food. He knew calorie intake is important when you’re dealing with cancer.

I wondered what the symptoms of dry mouth were… well, other than a dry mouth, that is.

“Common symptoms include:

  • A sticky, dry feeling in the mouth
  • Frequent thirst
  • Sores in the mouth; sores or split skin at the corners of the mouth; cracked lips
  • A dry feeling in the throat
  • A burning or tingling sensation in the mouth and especially on the tongue
  • A dry, red, raw tongue
  • Problems speaking or trouble tasting, chewing, and swallowing
  • Hoarseness, dry nasal passages, sore throat
  • Bad breath

Thank you to WebMD at https://www.webmd.com/oral-health/guide/dental-health-dry-mouth#1 for the above information.

Will you look at that! Just as diabetes can cause CKD and CKD can cause diabetes, bad breath (halitosis), soreness or burning sensation in the mouth can both be symptoms of dry mouth and problems caused by dry mouth.

Let’s see now. What else can I tell you about dry mouth? DentistryIQ at https://www.dentistryiq.com/clinical/oral-cancer/article/16356305/facts-about-dry-mouth is a new site for me. They describe themselves as “… a leading source of information that helps dental professionals achieve excellence in their positions, whether that position is dentist, dental practice owner, dental hygienist, dental office manager, dental assistant, or dental school student.” I went there to find out just how many people suffer from dry mouth.

“It is estimated to affect millions of people in the United States, particularly women and the elderly…. Current research indicates that approximately one in four adults suffer from dry mouth, and this figure increases to 40 percent in populations over the age of 55….”

This was back in 2006, and unfortunately are the most current figures I could find. Please let us know if you can find more current numbers.

Personal note: Tomorrow I will be having surgery to remove the pancreatic cancerous tumor I’ve been dealing with since last February. The blogs will be posted right on time, but comments, emails, etc. probably won’t be answered for a while. I’ve been told this is an arduous surgery with a long, slow recovery period. Keep well until we can communicate again.

Until next week,

Keep living your life!

How Will They Know?

Let’s start this month with a guest blog by American Medical Alert IDs. Why? Although I am not endorsing this particular brand, because I clearly remember being give Sulphur drugs in the Emergency Room when I was by myself and unable to let the medical staff there know I have Chronic Kidney Disease. Why? Because I remember that my husband fell when I was out of town. His grown children took him to the emergency room but didn’t know about his latex allergy and he was in no condition to explain.

 

Everything You Need To Know About Medical Alert IDs for Chronic Kidney Disease


Are you debating on getting a medical alert ID for chronic kidney disease? It’s time to take the confusion out of choosing and engraving a medical ID. This post will show you everything you need to know so you can enjoy the benefits of wearing one.

Why Kidney Patients Should Wear a Medical Alert ID

A medical ID serves as an effective tool to alert emergency staff of a patient’s special care needs, even when a person can’t speak for themselves. When every second counts, wearing a medical ID can help protect the kidney and safeguard its remaining function.

In emergencies, anyone diagnosed with chronic kidney disease or kidney failure may require special medical attention and monitoring. It is important that patients are able to communicate and identify their medical condition at all times. This includes individuals who are:

  • Undergoing in-center hemodialysis
  • Undergoing home hemodialysis
  • On Continuous Ambulatory Peritoneal Dialysis (CAPD)
  • On Continuous Cycling Peritoneal Dialysis (CCPD)
  • Transplant recipients
  • Diagnosed with diabetes

Delays in getting the proper treatment needed for chronic kidney disease may lead to the following complications:

  • Fatal levels of potassium or hyperkalemia. This condition can lead to dangerous, and possibly deadly, changes in the heart rhythm.
  • Increased risk of peritonitis or inflammation of the membranes of the abdominal wall and organs. Peritonitis is a life-threatening emergency that needs prompt medical treatment.
  • Anemia or decreased supply in red blood cells. Anemia can make a patient tired, weak, and short of breath.
  • Heart disease, heart attack, congestive heart failure, and stroke
  • High blood pressure which can cause further damage to the kidneys and negatively impact blood vessels, heart, and other organs in the body.
  • Fluid buildup in the body that can cause problems with the heart and lungs.

According to Medscape, the most common cause of sudden death in patients with ESRD is hyperkalemia, which often follows missed dialysis or dietary indiscretion. The most common cause of death overall in the dialysis population is cardiovascular disease; cardiovascular mortality is 10-20 times higher in dialysis patients than in the general population.

Kidney Patients Who Wear a Medical ID Have 62% Lower Risk of Renal Failure

In a study of 350 patients, primarily in CKD stages 2 through 5, those who wore a medical ID bracelet or necklace had a 62% lower risk of developing kidney failure, based on eGFR. Wearing a medical-alert bracelet or necklace was associated with a lower risk of developing kidney failure compared with usual care.

Wearing a medical ID can serve as a reminder to look after your health and make the right choices such as taking medication on time and sticking to proper diet.

6 Things to Engrave on Kidney Disease Medical ID

A custom engraved medical alert jewelry can hold precise information that is specific to the wearer’s health condition. Here are some of the most important items to put on a chronic kidney disease or kidney failure medical ID:

  • Name
  • Medical information – including if you have other medical conditions such as diabetes or high blood pressure
  • Stage of CKD or kidney function
  • Transplant information
  • Current list of medicines
  • Contact person

Some patients have a long list of medications that may not fit on the engraved part of an ID. An emergency wallet card is recommended to use for listing down your medicines and other information or medical history.

 

Click here to enlarge chronic kidney disease infographic

Do you wear or carry a form of medical identification with you? Please share your experience or tips with us by posting a comment.

Ready for a new topic? All right then. Ever have a problem drinking your coffee? I know I have… until I followed these tips from the Cleveland Clinic at https://health.clevelandclinic.org/coffee-giving-you-tummy-trouble-try-these-low-acid-options/:

Here’s hoping that next cup of coffee treats you well.

Until next week,

Keep living your life!

 

Stay in the Blood, PLEASE

Let’s finish out this lazy, hazy summer month of August with another reader question. This one was quite straight forward:

“Any advice to slow down protein leaking into urine. Hard to build muscle when you keep excreting protein”

The condition of leaking protein into your urine is called proteinuria. That’s almost self-explanatory. The root of the word actually says protein while the suffix (group of related letters added to the end of a word which changes its meaning) is defined as,

“-uria.

  1. suffix meaning the “presence of a substance in the urine”: ammoniuria, calciuria, enzymuria.
  2. combining form meaning “(condition of) possessing urine”: paruria, polyuria, pyuria.

Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-uria for the definition of uria.

Okay, so we know that protein is leaking into the urine. Not good. Why? We need it in our blood, not excreted in our urine. The following is from a previous blog on proteinuria. I used the dropdown menu in “Topics” on the right side of the blog page to find it or any other topic listed there. You can, too.

“According to WebMD at https://www.webmd.com/men/features/benefits-protein#1:

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

Got it. Our reader is correct; it is hard to build muscle if you’re “excreting protein.” Now what? I usually stick to medical sites but this comment from Healthfully at https://healthfully.com/170108-how-to-reduce-excess-protein-in-the-kidney.html caught my eye.

“Continue monitoring how much protein your kidneys are spilling for several months. Since colds and infections can cause transient increases in protein, you will want at least several months of data.”

As Chronic Kidney Disease patients, we usually have quarterly urine tests… or, at least, I do. My urine protein level is included. I did not know that colds and infections are a factor here. Here’s an old urine analysis of mine. You can see Protein, Urine fourth from the bottom.

Component Your Value Standard Range
Color, Urine Yellow Colorless, Light Yellow, Yellow, Dark Yellow, Straw
Clarity, Urine Clear Clear
Glucose, Urine Negative mg/dL Negative mg/dL
Bilirubin, Urine Negative Negative
Ketones, Urine Negative mg/dL Negative mg/dL
Specific Gravity, Urine 1.013 1.007 – 1.026
Blood, Urine Negative Negative
pH, Urine 7.0 5.0 – 8.0
Protein, Urine Negative mg/dL Negative mg/dL
Urobilinogen, Urine <2.0 mg/dL <2.0 mg/dL
Nitrite, Urine Negative Negative
Leukocyte Esterase, Urine Negative Negative

 

Let’s say our reader did not have a cold or infection. What else could she do to slow down this loss of protein via her urine?

The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html suggests the following:

“If you have diabetes or high blood pressure, the first and second most common causes of kidney disease, it is important to make sure these conditions are under control.

If you have diabetes, controlling it will mean checking your blood sugar often, taking medicines as your doctor tells you to, and following a healthy eating and exercise plan. If you have high blood pressure, your doctor may tell you to take a medicine to help lower your blood pressure and protect your kidneys from further damage. The types of medicine that can help with blood pressure and proteinuria are called angiotensin-converting enzyme inhibitors (ACE inhibitors) and angiotensin receptor blockers (ARBs).

If you have protein in your urine, but you do not have diabetes or high blood pressure, an ACE inhibitor or an ARB may still help to protect your kidneys from further damage. If you have protein in your urine, talk to your doctor about choosing the best treatment option for you.”

So far, we’ve discovered that frequent urine testing, determining if you have a cold or infection, keeping your diabetes and blood pressure under control, and/or ACE inhibitors may be helpful. But here’s my eternal question: What else can slow down the spilling of protein into our urine?

The Kidney & Urology Foundation of America, Inc. at http://www.kidneyurology.org/Library/Kidney_Health/Proteinuria.php has some more ideas about that:

“In addition to blood glucose and blood pressure control, restricting dietary salt and protein intake is recommended. Your doctor may refer you to a dietitian to help you develop and follow a healthy eating plan.”

As CKD patients, we know we need to cut down on salt intake. I actually eliminate added salt and have banned the salt shakers from the kitchen. No wonder no one but me likes my cooking. You do lose your taste for salt eventually. After all these years, I taste salt in restaurant food that makes that particular food unpalatable to me.

Hmmm, it seems to me that a list of high protein foods might be helpful here.

POULTRY…

  • Skinless chicken breast – 4oz – 183 Calories – 30g Protein – 0 Carbs – 7g Fat
  • Skinless chicken (Dark) – 4 oz – 230 Calories – 32g Protein – 0 Carbs – 5g Fat
  • Skinless Turkey (White) – 4 oz – 176 Calories – 34g Protein – 0 Carbs – 3.5g Fat
  • Skinless Turkey (Dark) – 4 oz – 211 Calories – 31g Protein – 0 Carbs – 8.1 g Fat

FISH…

  • Salmon – 3 oz – 119 Calories – 17g Protein – 0 Carbs – 5.5g Fat
  • Halibut – 3 oz – 91 Calories – 18g Protein – 0 Carbs – 3g Fat
  • Tuna – 1/4 cup – 70 Calories – 18g Protein – 0 Carbs – 0g Fat
  • Mackerel – 3 oz – 178 Calories – 16.1g Protein – 0 Carbs – 12g Fat
  • Anchovies (packed in water) – 1 oz – 42 Calories – 6g Protein – 1.3g Fat
  • Flounder – 1 127g fillet – 149 Calories – 30.7g Protein – 0 Carbs – 0.5g Fat (High Cholesterol)
  • Swordfish – 1 piece 106g – 164 Calories – 26.9g Protein – 0 Carbs – 1.5g Fat (High Cholesterol)
  • Cod – 1 fillet 180g – 189 Calories – 41.4g protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Herring – 1 fillet 143g – 290 Calories – 32.9g Protein – 0 Carbs – 3.7g Fat (High Cholesterol)
  • Haddock – 1 fillet 150g – 168 Calories – 36.4g Protein – 0 Carbs – 0.3g Fat (High Cholesterol)
  • Grouper – fillet 202g – 238 Calories – 50.2g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)
  • Snapper – 1 fillet 170g – 218 Calories – 44.7g Protein – 0 Carbs – 0.6g Fat (High Cholesterol)

BEEF…

  • Eye of round steak – 3 oz – 276 Calories – 49g Protein – 2.4g Fat
  • Sirloin tip side steak – 3 oz -206 Calories – 39g Protein – 2g Fat
  • Top sirloin – 3 oz – 319 Calories – 50.9g Protein – 4g Fat
  • Bottom round steak – 3 oz – 300 Calories – 47g Protein – 3.5g Fat
  • Top round steak – 3 oz – 240 Calories – 37g Protein – 3.1g Fat

PORK…

  • Pork loin – 3 oz – 180 Calories – 25g Protein – 0 Carbs – 2.9g Fat (High in cholesterol)
  • Tenderloin– 3 oz – 103 Calories – 18g Protein – 0.3g Carbs – 1.2g Fat (High in cholesterol)

GAME MEATS…

  • Bison – 3 0z – 152 Calories – 21.6g Protein – 0 Carbs – 3g Fat
  • Rabbit – 3 oz – 167 Calories – 24.7g Protein – 0 Carbs – 2.0g Fat
  • Venison (Deer loin broiled) – 3 oz – 128 Calories – 25.7g Protein – 0 Carbs – 0.7g Fat

GRAINS…

  • Cooked Quinoa – 1/2 cup – 115 Calories – 4.1g Protein – 22 Carbs – 2g Fat
  • Cooked Brown Rice – 1/2 cup – 106 Calories – 2.7g Protein – 23 Carbs – 0.7g Fat
  • Regular Popcorn (Air Popped no oil) – 1 cup – 60 Calories – 2g Protein – 11 Carbs – 0.6g Fat
  • Steel cut Oatmeal – 1 cup – 145 Calories – 7g Protein – 25g Carbs – 2.5g Fat
  • Multi grain bread – 1 slice – 68.9 Calories – 3.5g Protein – 11.3g Carbs – 0.2g Fat

BEANS (All nutrition values calculated for cooked beans)…

  • Tofu – 1/2 cup – 98 Calories – 11g Protein – 2g Carbs – 6g Fat
  • Lentils – 1/2 cup – 119 Calories – 9g Protein – 20g Carbs – 0.3g Fat
  • Black beans – 1/2 cup – 115 Calories – 7.8g Protein – 20 Carbs – 0.4g Fat
  • Kidney beans – 1/2 cup – 111 Calories – 7.2g Protein – 20.2 Carbs – 0.4g Fat
  • Lima beans – 1/2 cup – 110 Calories – 7.4g Protein – 19.7 Carbs – 0.3g Fat
  • Soy beans – 1/2 cup – 133 Calories – 11g Protein – 10 Carbs – 5.9g Fat

DAIRY…

  • Skim milk – 1 cup – 90 Calories – 9g Protein – 12g Carbs – 4.8g Fat
  • Low fat Yogurt – 1 cup – 148 Calories – 12g Protein – 17Carbs – 3.2g Fat
  • Non fat Yogurt – 1 cup – 130 Calories – 13g Protein – 16.9 Carbs – 0.4 Fat
  • Cheddar cheese – 1 oz – 116 Calories – 7g Protein – 0.4 Carbs – 9.2g Fat
  • Low fat Cottage Cheese – 1/2 cup – 82 Calories – 14g Protein – 3.1g Carbs – 0.7g Fat
  • One large egg – 73 Calories – 6.6g Protein – 0 Carbs – 6g Fat
  • Low fat Milk – 1 cup – 119 Calories – 8g Protein – 12 Carbs – 4.6g Fat

NUTS & SEEDS…

  • Raw Almonds – 1 oz about 22 whole – 169 Calories – 22g Carbs – 6.2g Protein – 1.1g Fat
  • Raw Pistachios – 1 oz about 49 Kernels – 157 Calories – 7.9g Carbs – 5.8g Protein – 1.5g Fat
  • Pumpkin seeds – 1 oz – 28g about 100 hulled seeds – 151 Calories – 5g Carbs – 6.0g Protein – 2.4g Fat
  • Raw Macadamia nuts – 1 oz about 10- 12 kernels – 203 Calories – 4g Carbs – 2.2g Protein – 3.4g Fat
  • Chia seeds – 1 oz – 137 Calories – 12.3g Carbs – 4.4g Protein – 0.9g Fat
  • Walnuts – 1 cup in shell about 7 total – 183 Calories – 3.8g Carbs – 4.3g Protein – 1.7g Fat
  • Raw Cashews1oz – 28g – 155 Calories – 9.2g Carbs – 5.1g Protein – 2.2g Fat

MORE HIGH PROTEIN FOODS…

  • Natural peanut butter – 1 oz – 146 Calories – 7.3g Protein – 10g Carbs – 1.6g Fat
  • Natural almond butter – 1 tbsp – 101 Calories – 2.4g Protein – 3.4 Carbs – 0.9g Fat
  • Natural cashew butter – 1 tbsp – 93.9 Calories – 2.8g Protein – 4.4 Carbs – 1.6g Fat
  • Hummus – 1 oz – 46.5 Calories – 2.2g Protein – 4.0g Carbs – 0.4g Fat
  • Tempeh Cooked – 1 oz – 54 Calories – 5.1g Protein – 2.6g Carbs – 1.0g Fat

There’s a vegan list on the same site. Be leery of protein sources that are not on your kidney diet.

Until next week,

Keep living your life!

 

That Looks Swollen       

Remember I mentioned that several readers have asked questions that would become blogs? For example, one reader’s question became last week’s blog concerning creatinine and PTH. Another reader’s question became this week’s blog about lymphedema. She was diagnosed with it and wondered if it had anything to do with her protein buildup.

She’s a long time reader and online friend, so she already knows I remind those that ask questions that I am not a doctor and, no matter what I discover, she must speak with her nephrologist before taking any action based on what I wrote. That is always true. I’m a CKD patient just like you. The only difference is that I know how to research (Teaching college level Research Writing taught me a lot.) and happen to have been a writer for decades before I was diagnosed. Just take a look at my Amazon Author Page at amazon.com/author/gailraegarwood . But enough about me.

Anyone know what lymphedema is? I didn’t when I first heard the word, although my Hunter College of C.U.N.Y education as an English teacher gave me some clues. Edema had something to do with swelling under the skin. Actually, we can get more specific with The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/-edema :

“suffix meaning swelling resulting from an excessive accumulation of serous fluid in the tissues of the body in (specified) locations”

I took a guess that lymph had to do with the lymph nodes. Using the same dictionary, but this time at https://medical-dictionary.thefreedictionary.com/lymph, I found this:

“The almost colourless fluid that bathes body tissues and is found in the lymphatic vessels that drain the tissues of the fluid that filters across the blood vessel walls from blood. Lymph carries antibodies and lymphocytes (white blood cells that help fight infection) that have entered the lymph nodes from the blood.”

Time to attach the suffix (group of letters added at the end of a word that changes its meaning) to the root (most basic meaning of the word) to come up with a definition of lymphedema. No, not my definition, the same dictionary’s.

“Swelling, especially in subcutaneous tissues, as a result of obstruction of lymphatic vessels or lymph nodes, with accumulation of lymph in the affected region.”

I found this definition at https://www.thefreedictionary.com/lymphedema, but if you switch the search options at the top of the page from dictionary to medical dictionary, you’ll find quite a bit of information about lymphedema.

Okay, we know what lymphedema is now but what – if anything – does that have to do with protein buildup? This is the closest I could come to an answer that

  1. Wasn’t too medical for me to understand and
  2. Had anything to do with the kidneys.

“A thorough medical history and physical examination are done to rule out other causes of limb swelling, such as edema due to congestive heart failure, kidney failure, blood clots, or other conditions.”

It’s from MedicineNet at https://www.medicinenet.com/lymphedema/article.htm#how_is_lymphedema_diagnosed

My friend, while a Chronic Kidney Disease patient, is not in renal failure. Was there something I missed?

Johns Hopkins Medicine at https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/treating-lymphedema gives us our first clue. It seems that lymphedema is a buildup of a specific fluid: protein-rich:

“Lymphedema is an abnormal buildup of protein-rich fluid in any part of the body as a result of malfunction in the lymphatic system.”

Malfunction in the lymphatic system? What could cause that? According to Lymphatic Education & Research at https://lymphaticnetwork.org/living-with-lymphedema/lymphatic-disease:

Secondary Lymphedema (acquired regional lymphatic insufficiency) is a disease that is common among adults and children in the United States. It can occur following any trauma, infection or surgery that disrupts the lymphatic channels or results in the loss of lymph nodes. Among the more than 3 million breast cancer survivors alone, acquired or secondary lymphedema is believed to be present in approximately 30% of these individuals, predisposing them to the same long-term problems as described above. Lymphedema also results from prostate, uterine, cervical, abdominal, orthopedic cosmetic (liposuction) and other surgeries, malignant melanoma, and treatments used for both Hodgkin’s and non-Hodgkin’s lymphoma. Radiation, sports injuries, tattooing, and any physical insult to the lymphatic pathways can also cause lymphedema. Even though lymphatic insufficiency may not immediately present at the time any of the events occur, these individuals are at life-long risk for the onset of lymphedema.”

I know the reader who has asked the question has a complex medical history that may include one or more of the conditions listed above. As for the protein buildup, we already know that kidneys which are

not working well don’t filter the protein from your blood as well as they could. So, is there a connection between this reader’s protein buildup and her lymphedema? Sure looks like it.

While the following is from BreastCancer.org at https://www.breastcancer.org/treatment/lymphedema/how/start, it is a simple explanation that may apply to other causes of lymphedema, too:

“… lymph nodes and vessels can’t keep up with the tissues’ need to get rid of extra fluid, proteins (Gail here: my bolding), and waste.… the proteins and wastes do not get filtered out of the lymph as efficiently as they once did. Very gradually, waste and fluid build up…. “

Ready for a topic change? The World Health Organization offers this pictograph for our information. Notice diabetes, one of the main causes of Chronic Kidney Disease.

Until next week,

Keep living your life!

What’s That Got to Do with My Occupation?

I’ve written about neuropathy, but what is this occupational therapy that may treat it? I know about physical therapy and have made use of it when necessary. Remember a few years ago when knee surgery was indicated? Physical therapy helped me avoid the surgery.

This time I was offered gabapentin for the neuropathy. That’s a drug usually used for epilepsy which can also help with neuropathy. I would explain how it works, but no one seems to know. I had two problems with this drug:

  1. Gabapentin became a controlled substance in England as of April of this year. England always seem to be one step ahead of the U.S. re medications.
  2. It is not suggested if you have kidney disease.

My other option was occupational therapy. That’s the one I chose. Let’s backtrack a bit for a definition of occupational therapy. Thank you to my old buddy (since college over 50 years ago) the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/occupational%20therapy for the following definition.

“therapy based on engagement in meaningful activities of daily life (such as self-care skills, education, work, or social interaction) especially to enable or encourage participation in such activities despite impairments or limitations in physical or mental functioning”

That got me to wondering just how occupational therapy differed from physical therapy, the kind of therapy with which I was already familiar. I went to my old buddy again, but this time at https://www.merriam-webster.com/dictionary/physical%20therapy for any hints I could pick up from the definition for physical therapy.

“therapy for the preservation, enhancement, or restoration of movement and physical function impaired or threatened by disease, injury, or disability that utilizes therapeutic exercise, physical modalities (such as massage and electrotherapy), assistive devices, and patient education and training”

Made sense to me. Physical therapy was for the movement of the body, while occupational therapy was to help you carry out the tasks of your daily life. For example, it takes me longer to write a blog because my tingling, yet numb, fingers often slip into the spaces between the keys on the keyboard. Another example is that I now use a cane since I can’t tell if my tingling, yet numb, feet are flat on the floor as I walk.

Something I found interesting about occupational therapy is that it uses many forms of therapy that were once considered alternative medicine… like electrical energy. What’s that you say? You’d like an example?

Well, here you go. My therapist uses a machine called a Havimat. The following is from the National Stem Cell Institute at https://nsistemcell.com/hivamat-how-it-relieves-edema/  and explains what the Havimat can do and how.

“….The therapist connects an electronic lead to his/her wrist while the patient grasps a small cylinder grip. The vinyl gloves that the therapist wears prevents the circuit of electric current from closing, thus creating the ‘push-pull’ effect that penetrates deeply into tissues. Meanwhile, the patient’s experience is one of a pleasant, deep massage maintained by the therapist’s gentle pressure as he/she directs the deep oscillation.

…. The therapy “un-dams” trapped fluid. Tissues are decongested and edema is significantly reduced. This shrinks swelling in the area being treated. Hivamat has been shown to be exceptionally effective in relieving lymphedema when used by therapists to enhance manual lymphatic drainage.

…. Besides the reduction of edema, therapists use Hivamat for ridding tissues of toxins [Gail here: like chemotherapy.]  When used by a certified therapist during a manipulation technique known as manual lymphatic drainage, the therapy improves lymph fluid movement. This encourages better flow through the lymphatic system, which then carries away metabolic waste and toxins more quickly. Hivamat also promotes the production of lymphocytes, which improve the function of the immune system. [Gail here again: as CKD patients, our immune systems are compromised.]”

There is one thing, though. Apparently, the Havimat is NOT suggested if there is an active tumor. Uh-oh, I had three treatments with the Havimat before I uncovered that fact. I’ll have to speak with my therapist today and find out why she didn’t know that. But it is clear that using electrical energy as treatment is another case of what was formerly considered alternative medicine becoming mainstream medicine.

Topic switch. I’ve written about the American Association of Kidney Patients (AAKP), precision care, and clinical trials many times before. You’re probably already aware of the new initiative for patient care. AAKP wants your help in doing their part as far as patient experience with this survey.

“As part of AAKP’s National Strategy, we have expanded our

capacities to involve a far larger, and more representative, number

of patients in research opportunities and clinical trials. The

results of these research opportunities and clinical trials will help

create a clearer understanding of the patient experience and help

shape the future of kidney disease treatment and care. AAKP is

fully committed to changing the status quo of kidney care

and to better aligning treatment to personal aspirations.

To achieve this goal, the AAKP Center for Patient Research &

Education is working with top researchers to ensure that the

patient voice, patient preferences and patient perceptions are

heard.

AAKP is very pleased to partner with Northwestern University

and University of Pennsylvania on an important research

project organ donation.

Please consider taking part in this online survey and help

shape the future of kidney care for you and those yet to

be diagnosed.

Volunteers Needed for Research Study!

Researchers at Northwestern University and University of Penn-

sylvania invite kidney transplant candidates to participate

in a survey about your opinions of research done on donor

organs. Such research aims to help organs work better and

make more organs available for transplantation.

Your responses will help to improve the informed consent

process for transplant candidates.

You are eligible to participate if you:

•  Are 18+ years old

•  Speak English

•  Are currently a transplant candidate on the waitlist for only

    one organ

This anonymous survey is voluntary, and will take about 45

minutes of your time.

Your decision about participating will not affect your place on

the waiting list. Your participation may help improve the informed

consent process for transplant candidates.

Find out more information and take the survey by clicking

the link below [Gail here yet again: Don’t forget to click

control at the same time.]:

https://redcap.nubic.northwestern.edu/redcap/surveys/index.php?s=TEMXLDLF8A

Thank you to those taking part in the survey for helping

AAKP help those awaiting a transplant.

Until next week,

Keep living your life!

Not Nuked

Friday, I saw my oncology radiologist after having had a week of radiation treatments. As he was explaining what the radiation was meant to do to the remaining third of the tumor and how it was being done, one sentence he uttered stood out to me: “This doesn’t work like your microwave.”

Since radiation is also used in treating kidney cancer… and any other kind of cancer, to the best of my knowledge… I decided to take a look at that statement. First we need to know how a microwave works, so we know how radiation treatment for cancer doesn’t work. I went to the Health Sciences Academy at https://thehealthsciencesacademy.org/health-tips/microwave-radiation/ for an explanation.

“How do microwaves work?

Before we talk about how microwaves heat your food, let’s make a distinction between two very different kinds of radiation:

  1. ionising radiation, and
  2. non-ionising radiation.

Ionising radiation, which can remove tightly-bound electrons from atoms, causing them to become charged, is less risky in very tiny amounts (such as x-rays) but can cause problems when exposure is high (think burns and even DNA damage). However, microwaves emit non-ionising radiation; a type of radiation that has enough energy to move atoms around within a molecule but not enough to remove electrons.

What does this mean? Because the radiation from microwaves is non-ionising, it can only cause molecules in the food to move. …. In other words, microwave radiation cannot alter the chemical structure of food components. More precisely, when heating food in a microwave, the radiation that the microwave produces is actually absorbed by the water molecules in the food. This energy causes the water molecules to vibrate, generating heat through this (harmless) friction, which cooks the food. This mechanism is what makes microwaves much faster at heating food than other methods. Its energy immediately reaches molecules that are about an inch below the outer surface of the food, whereas heat from other cooking methods moves into food gradually via conduction….”

Phew, I’m glad to know I’m not being cooked from the inside. But what is happening to me and everyone else who has radiation as a cancer treatment? I went straight to the American Cancer Society at https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/radiation/basics.html  for the answer.

“Radiation therapy uses high-energy particles or waves, such as x-rays, [Gail here: this is ionising radiation.] gamma rays, electron beams, or protons, to destroy or damage cancer cells.

Your cells normally grow and divide to form new cells. But cancer cells grow and divide faster than most normal cells. Radiation works by making small breaks in the DNA inside cells. These breaks keep cancer cells from growing and dividing and cause them to die. Nearby normal cells can also be affected by radiation, but most recover and go back to working the way they should.

Unlike chemotherapy, which usually exposes the whole body to cancer-fighting drugs, radiation therapy is usually a local treatment. In most cases, it’s aimed at and affects only the part of the body being treated. Radiation treatment is planned to damage cancer cells, with as little harm as possible to nearby healthy cells.

Some radiation treatments (systemic radiation therapy) use radioactive substances that are given in a vein or by mouth. Even though this type of radiation does travel throughout the body, the radioactive substance mostly collects in the area of the tumor, so there’s little effect on the rest of the body.”

I don’t know how many times this was explained to me, but seeing it now in black and white (and blue for the click through) suddenly makes it clear. So this means I’ve had four months of my entire body being attacked – in a lifesaving way, of course – now only the cancer cells are being attacked.

Yet, I am experiencing some side effects even after only one week of radiation. I wondered if that’s usual. Cancer.net at https://www.cancer.net/navigating-cancer-care/how-cancer-treated/radiation-therapy/side-effects-radiation-therapy   answered that question for me.

“Why does radiation therapy cause side effects?

High doses of radiation therapy are used to destroy cancer cells. Side effects come from damage to healthy cells and tissues near the treatment area. Major advances in radiation therapy have made it more precise. This reduces the side effects.

Some people experience few side effects from radiation therapy. Or even none. Other people experience more severe side effects.

Reactions to the radiation therapy often start during the second or third week of treatment. They may last for several weeks after the final treatment.

Are there options to prevent or treat these side effects?

Yes. Your health care team can help you prevent or treat many side effects. Preventing and treating side effects is an important part of cancer treatment. This is called palliative care or supportive care.

Potential side effects

Radiation therapy is a local treatment. This means that it only affects the area of the body where the tumor is located. For example, people do not usually lose their hair from having radiation therapy. But radiation therapy to the scalp may cause hair loss.

Common side effects of radiation therapy include:

Skin problems. Some people who receive radiation therapy experience dryness, itching, blistering, or peeling. These side effects depend on which part of the body received radiation therapy. Skin problems usually go away a few weeks after treatment ends. If skin damage becomes a serious problem, your doctor may change your treatment plan.

Fatigue. Fatigue describes feeling tired or exhausted almost all the time. Your level of fatigue often depends on your treatment plan. For example, radiation therapy combined with chemotherapy may result in more fatigue. Learn more about how to cope with fatigue.

Long-term side effects. Most side effects go away after treatment. But some continue, come back, or develop later. These are called late effects. One example is the development of a second cancer. This is a new type of cancer that develops because of the original cancer treatment. The risk of this late effect is low. And the risk is often smaller than the benefit of treating the primary, existing cancer.”

Funny how I managed to forget about late effects, even though my oncology team made it clear this could happen. I think having the radiation to rid myself of this cancer is worth the risk.

Until next week,

Keep living your life!

Platelets, Blood, and RSNHope or a Little Bit of This and a Little Bit of That

A reader from India asked me why I kept writing about chemotherapy. I explained that I have pancreatic cancer and that was part of my treatment. Chronic Kidney Disease patients may develop kidney cancer, although this type of cancer is not restricted to CKD patients. They also may develop another type of cancer that has nothing to do with the kidneys. Everyone’s experience with chemotherapy is different, but I thought one person’s experience was better than none. Here’s hoping you never have to deal with any kind of cancer or chemotherapy, however.

While we’re on explanations, I have a correction to make. The nurses at the Pancreatic Cancer Research Institute here in Arizona are a fount of knowledge. One of them heard me talking to my daughter about a platelet infusion and corrected me. It seems it’s a platelet transfusion, just as it’s a blood transfusion.

According to The Free Medical Dictionary at https://medical-dictionary.thefreedictionary.com/infusion

“in·fu·sion

(in-fyū’zhŭn),

  1. The process of steeping a substance in water, either cold or hot (below the boiling point), to extract its soluble principles.
  2. A medicinal preparation obtained by steeping the crude drug in water.
  3. The introduction of fluid other than blood, for example, saline solution, into a vein.”

The same dictionary, but at https://medical-dictionary.thefreedictionary.com/transfusion , tells us:

“Transfusion is the process of transferring whole blood or blood components from one person (donor) to another (recipient).”

Therein lays the difference. Platelets are part of the blood, so it’s a platelet transfusion. I’m glad that’s straightened out.

While we’re on this topic, here’s a chart of compatible blood types for transfusions… always a handy thing to have.

Blood Type of Recipient Preferred Blood Type of Donor If Preferred Blood Type Unavailable, Permissible Blood Type of Donor
A A O
B B O
AB AB A, B, O
O O No alternate types

O is the universal blood type and, as you’ve probably noticed, is compatible with all blood types. The plus or minus sign after your blood type refers to being RH negative or positive. For example, my blood type is B+. That means I have type B blood and am RH positive.

I’ve had platelet transfusions several times since I was leaking blood here and there. Nothing like eating lunch and having nasal blood drip into your salad. Ugh! You also become weak and your hemoglobin goes down. Not a good situation at all. You know I’m hoping you never need one, but who knows what can happen in the future. Just in case you’ve forgotten what platelets are, Macmillan Cancer Support at https://www.macmillan.org.uk/information-and-support/treating/supportive-and-other-treatments/supportive-therapies/platelet-transfusions.html#18772 is here to help us out.

“Platelets are tiny cells in your blood which form clots to help stop bleeding. They develop from stem cells in the bone marrow (the spongy material inside the bones). They are then released from your bone marrow into your blood and travel around your body in your bloodstream. Platelets usually survive for 7–10 days before being destroyed naturally in your body or being used to clot the blood.”

You’ll probably notice the term “RH Positive” (unless you’re RH Negative, of course) written on the platelet transfusion bag. You know I had to find out why.  Memorial Sloan Cancer Center at https://www.mskcc.org/cancer-care/patient-education/frequently-asked-questions-about-blood-transfusion offers this information about your blood that will help us understand:

“Your blood type is either A, B, AB, or O. It’s either Rh positive (+) or Rh negative (-).

Your blood type is checked with a test called a type and crossmatch. The results of this test are used to match your blood type with the blood in our blood bank. Your healthcare provider will check to make sure that the blood is the correct match for you before they give you the transfusion.”

The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/rh-factor/about/pac-20394960 clarifies just what Rh Positive means:

“Rhesus (Rh) factor is an inherited protein found on the surface of red blood cells. If your blood has the protein, you’re Rh positive. If your blood lacks the protein, you’re Rh negative.

Rh positive is the most common blood type. Having an Rh negative blood type is not an illness and usually does not affect your health. However, it can affect your pregnancy. “

What I found especially interesting is that,

“If you have Rh-positive blood, you can get Rh-positive or Rh-negative blood. But if you have Rh-negative blood, you should only get Rh-negative blood. Rh-negative blood is used for emergencies when there’s no time to test a person’s Rh type.”

Thank you to Health Jade at https://healthjade.net/blood-transfusion/#Rh_Rhesus_factor for this information. This is a new site for me. You might want to take a look since their illustrations make so much clear.

Switching topics now. Are you aware of RSNHope.org? Lori Hartwell is one of the most active CKD and dialysis people I’ve met in the entire nine years I’ve been writing about CKD. For example, she has this wonderful salad bar help for the renal diet:

“Choose:  lettuce escarole, endive, alfalfa sprouts, celery sticks, cole slaw, cauliflower, cucumbers, green beans, green peas, green peppers, radishes, zucchini, better, eggs (chopped), tuna in spring water, parmesan cheese, Chinese noodles, gelatin salads, Italian low calorie dressing, vinaigrette, low fat dressing.

Avoid:  avocado, olives, raisins, tomatoes, pickles, bacon bits, chickpeas, kidney beans nuts, shredded cheddar cheese, three bean salads, sunflower seeds, Chow Mein noodles, fried bread croutons, potato salad, thick salad dressing, relishes”

What could be easier than printing this out and sticking it in your wallet? But Lori is not just about the renal diet. She also posts CKD & dialysis podcasts at KidneyTalk 24/7 Podcast Radio Show. All this and more are on the website. I must admit I look forward to the RSNHope magazine each quarter.

Until next week,

Keep living your life!

Diabetic Neuropathy or Not: I WILL Dance Again

I come from a family of dancers. My parents and their siblings were all light on their feet and danced from the time they were teens right up until just before their deaths. It was a delight to watch them. The tradition continued with me… and my youngest who actually taught blues dancing for several years.

Ah, but then my neuropathy appeared. This was years before the diabetes diagnosis. Hmmm, there’s still a question as to whether or not the diabetes was caused by the pancreatic cancer. After all, the pancreas does produce insulin.

I just reread the above two paragraphs and see so much that needs some basic explanation. Let’s start with those explanations this week. How many of you know what neuropathy is? I didn’t either until I was diagnosed with it. According to my favorite dictionary since college a million years ago, The Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/neuropathy defines neuropathy as:

“damage, disease, or dysfunction of one or more nerves especially of the peripheral nervous system that is typically marked by burning or shooting pain, numbness, tingling, or muscle weakness or atrophy, is often degenerative, and is usually caused by injury, infection, disease, drugs, toxins, or vitamin deficiency “

If you clicked though on ‘peripheral nervous system’ in the dictionary definition, you know it means,

“the part of the nervous system that is outside the central nervous system and comprises the cranial nerves excepting the optic nerve, the spinal nerves, and the autonomic nervous system”

Since the neuropathy was so minor before the pancreatic cancer, I wasn’t even aware of it until my neurologist did some testing. I knew my feet were tingly sometimes, but I thought they had fallen asleep. It did sort of feel like that.

Then, I started chemotherapy in March. The tingling became so bad that I couldn’t feel my feet under me and had to rely on a cane to keep my balance. We thought it was the chemo drugs causing the neuropathy. Uh-oh, that was just about when my hands became affected, too, and my A1C (Remember that one? It’s the blood test for the average of your blood glucose over a three month period.) rose all the way to 7.1.

Healthline at https://www.healthline.com/health/type-2-diabetes/ac1-test#understanding-the-results tells us,

“Someone without diabetes will have about 5 percent of their hemoglobin glycated [Gail here: that means glucose bonded to hemoglobin]. A normal A1C level is 5.6 percent or below, according to the National Institute of Diabetes and Digestive and Kidney Diseases.

A level of 5.7 to 6.4 percent indicates prediabetes. People with diabetes have an A1C level of 6.5 percent or above.”

Mind you, during chemotherapy I’d been ordered to eat whatever I could. Getting in the calories would cut down on the expected weight loss. In all honesty, I’m the only person I know what gained weight while on chemotherapy.

Now, what is this about the pancreas producing insulin? Might as well get a definition of insulin while we’re at it. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=3989 offered the simplest explanation:

“A natural hormone made by the pancreas that controls the level of the sugar glucose in the blood. Insulin permits cells to use glucose for energy. Cells cannot utilize glucose without insulin.”

That would explain why my energy is practically nil, but it also seems to indicate that I won’t be able to do anything about it until after the surgery to remove the tumor. Although, when I start radiation next week, I may be able to go back to the diabetic diet. By the way, after following the Chronic Kidney Disease diet for 11 years, none of the new – off the CKD diet – foods I tried are appealing to me.

But I digress. So, what now? I need to dance; it’s part of who I am. My oncologist referred me to Occupational Therapy. Now I have exercises and tactile surfaces to explore that may be helpful. But what about those who are not going through chemotherapy, but do have diabetic neuropathy? Remember diabetes is the number cause of CKD.

Oh, my goodness. It looks like there are as many ways to treat neuropathy as there are different kinds of neuropathy. I hadn’t expected that. EverydayHealth at https://www.everydayhealth.com/neuropathy/guide/treatment/ gives us an idea of just how complicated choosing the proper treatment for your neuropathy can be:

What Are the Main Ways That Neuropathy Is Treated?

Treating neuropathy in general focuses first on identifying and then addressing the underlying condition to help prevent further damage and give nerves the time they need to heal to the extent that they can.

“The treatment for the neuropathy is to reverse whatever it is that is causing the neuropathy,” says Clifford Segil, DO, a neurologist at Providence Saint John’s Health Center in Santa Monica, California. “We try to reverse the insult to the nerves first and then do symptomatic control.”

For people with diabetic neuropathy, the first step physicians take is getting the person’s blood glucose level under control, says Matthew Villani, DPM, a podiatrist at Central Florida Regional Hospital in Sanford, Florida.

This treatment approach aims to remove the “insult” created by the excess sugar to peripheral nerves throughout the body — but especially the extremities, Dr. Segil explains.

Here are some other ways diabetic neuropathy may be treated:

  • Numbness or complete loss of sensation can lead to complications such as ulcers, sores, and limb amputations. It is addressed by monitoring the affected areas — often the feet — for injuries and addressing wounds before they become more serious, as well as prescribing protective footwear and braces.
  • Orthostatic hypotension (a drop in blood pressure upon standing up), which is an autonomic symptom, can be treated with increased sodium intake, a vasopressor such as ProAmatine (midodrine) to constrict blood vessels, a synthetic mineralocorticoid such as fludrocortisone to help maintain the balance of salt in the body, or a cholinesterase inhibitor such as pyridostigmine, which affects neurotransmitters.
  • Gastroparesis, a delayed emptying of the stomach, is another autonomic symptom, which can be treated with medication to control nausea and vomiting, such as Reglan (metoclopramide), Ery-Tab (erythromycin), antiemetics, and antidepressants, as well as pain medication for abdominal discomfort.
  • Motor neuropathy symptoms can include weakness and muscle wasting, particularly in the lower extremities, as well as deformities of the feet and loss of the Achilles’ heel tendon reflex. Treatments can include physical therapy to regain strength, as well as braces and orthotics.

I’ve got to think about this. Any questions? Well, then,

Until next week,

Keep living your life!

Platelets Keep It Together

During my chemo journey, I’ve needed an infusion of platelets several times. Chronic Kidney Disease patients sometimes need them, too, but I’ll write about that later on in this blog. First question from the audience?

Oh, that’s a good one: What are platelets? This is from my very first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and will help to explain.

“1. The white blood cells makeup your immune system. There are usually from 7,000 to 25,000 WBC in a drop of blood, but if you have an infection, that number rises since these are the infection fighting blood cells.

2. The red blood cells, also called erythrocytes, carry oxygen to the other cells in your body – so the higher the number here the better – and waste such as carbon dioxide from them. There are approximately five billion red blood cells – the midsized cells – in a single drop of your blood.

3. The platelets deal with the blood’s clotting ability by repairing leaks in your blood vessels. Normally, there are 150,000 to 350,000 platelets in one drop of blood.”

I’ve included all three types of blood cells as we just might need that information later on.

Okay, how about another question? What’s that? You want to know how you know if your platelets are decreased? When you have blood tests, one of them is usually the CBC or Complete Blood Count. Let’s see if we can find more information from The Mayo Clinic at https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac-20384919.

“A complete blood count (CBC) is a blood test used to evaluate your overall health and detect a wide range of disorders, including anemia, infection and leukemia.

A complete blood count test measures several components and features of your blood, including:

Red blood cells, which carry oxygen

White blood cells, which fight infection

Hemoglobin, the oxygen-carrying protein in red blood cells

Hematocrit, the proportion of red blood cells to the fluid component, or plasma, in your blood

Platelets, which help with blood clotting”

If your doctors are anything like mine, I have one every three months for my primary care doctor, an annual CBC for my nephrologist, and weekly for my oncologist.

Now, remember the normal range of platelets is 150,000 to 350,000 platelets in one drop of blood. Mine were 16,000. Sure, it was the chemotherapy that was killing my platelets, but it was also the chemotherapy that was shrinking the tumor and lowering the tumor markers in my CA19-9 (blood test for tumor markers in pancreatic cancer). I couldn’t stop the chemotherapy, but my doctors could raise my platelets via infusion.

Young man in the back? Nice! He wants to know what the difference between infusion and transfusion is.  According to The Free Dictionary’s Medical Dictionary at https://medical-dictionary.thefreedictionary.com/infusion, infusion means

1. the steeping of a substance in water to obtain its soluble principles.

2. the product obtained by this process.

3. the slow therapeutic introduction of fluid other than blood into a vein.

That’s right. The third definition is the one we need.

Using the same source, this time at https://medical-dictionary.thefreedictionary.com/transfusion, we learn that transfusion means

“Transfusion is the process of transferring whole blood or blood components from one person (donor) to another (recipient).”

By the way, there’s quite a bit of other information about transfusions on this page.

Let’s talk about platelet infusions and CKD patients now. UpToDate at https://www.uptodate.com/contents/platelet-dysfunction-in-uremia  offers the following, but we may need a bit of hand holding to understand it:

“The association between renal dysfunction and bleeding was recognized more than 200 years ago…. However, there remains an incomplete understanding of the underlying pathophysiology. Impaired platelet function is one of the main determinants of uremic bleeding. This impairment is due largely to incompletely defined inhibitors of platelet function in the plasma of patients with markedly reduced kidney function. Abnormal platelet-endothelial interaction and anemia also play a role.”

Do you remember what uremic means? No problem … come along with me to visit my old buddy, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/uremia

“1accumulation in the blood of constituents normally eliminated in the urine that produces a severe toxic condition and usually occurs in severe kidney disease

2: the toxic bodily condition associated with uremia”

Let’s use the same dictionary, this time at https://www.merriam-webster.com/dictionary/endothelial, for the definition of endothelial, which is the adjective or describing word for endothelium.

“1: an epithelium of mesodermal origin composed of a single layer of thin flattened cells that lines internal body cavities and the lumens of vessels

2: the inner layer of the seed coat of some plants”

You guessed it: the first definition is the one we need. I think all the pieces are in place for you to understand the need for the right number of platelets and that platelet infusions are sometimes necessary. Too bad I didn’t before my white blouses and nightgowns were stained by the blood leaking from my nose (and other places too delicate to mention). Oh well, I can always buy more clothes.

New topic. I’ve written about All of Us Research several times and received this email from them this week.

“In case you missed it, we introduced our new Data Browser at the All of Us Research Program symposium on May 6th. The Data Browser is an interactive tool that lets you learn more about the health data that you and all the other participants have contributed so far. Currently in beta testing, it lets you search by topics like health conditions, survey questions, and physical measurements, and will include more data over time.

 We invite you to take a look at the Data Browser and let us know what you think. If you have feedback, you can email support@ResearchAllofUs.org.”

The URL for the Data Browser is https://databrowser.researchallofus.org.

Until next week,

Keep living your life!

More Time to Learn

I don’t think I’ve ever felt this tired in my life. Cancer does that… and it leaves me a lot of time in bed to explore whatever I’d like to on the internet. So now I’m discovering all these – what’s the word? – possibly peripheral? diseases that affect the kidneys. For example, while I don’t have the energy to post a new Chronic Kidney Disease picture on Instagram every day, I do check the site daily and like what appeals to me and learn from what’s new to me.

That’s where I noticed posts about Bartter syndrome. If you’re like me, you want to know about something you’ve never heard of before. Let’s explore this together.

I went directly to my old friend, MedlinePlus, which is part of the U.S. National Library of Medicine at https://medlineplus.gov/ency/article/000308.htm for a definition and the causes:

“Bartter syndrome is a group of rare conditions that affect the kidneys.

Causes

There are five gene defects known to be associated with Bartter syndrome. The condition is present at birth (congenital). The condition is caused by a defect in the kidneys’ ability to reabsorb sodium. People affected by Bartter syndrome lose too much sodium through the urine. This causes a rise in the level of the hormone aldosterone, and makes the kidneys remove too much potassium from the body. This is known as potassium wasting. The condition also results in an abnormal acid balance in the blood called hypokalemic alkalosis, which causes too much calcium in the urine.”

It looks like there are a few terms here we may now be familiar with. Let’s take a look at aldosterone. The Hormone Health Network from the Endocrine Society at https://www.hormone.org/hormones-and-health/hormones/aldosterone tells us:

“Aldosterone is produced in the cortex of the adrenal glands, which are located above the kidneys…. Aldosterone affects the body’s ability to regulate blood pressure. It sends the signal to organs, like the kidney and colon, that can increase the amount of sodium the body sends into the bloodstream or the amount of potassium released in the urine. The hormone also causes the bloodstream to re-absorb water with the sodium to increase blood volume. All of these actions are integral to increasing and lowering blood vessels. Indirectly, the hormone also helps maintain the blood’s pH and electrolyte levels.”

And hypokalemic alkalosis? What is that? Healthline at https://www.healthline.com/health/alkalosis#types  gave me the answer: “Hypokalemic alkalosis Hypokalemic alkalosis occurs when your body lacks the normal amount of the mineral potassium. You normally get potassium from your food, but not eating enough of it is rarely the cause of a potassium deficiency. Kidney disease, excessive sweating, and diarrhea are just a few ways you can lose too much potassium. Potassium is essential to the proper functioning of the:

  • heart
  • kidneys
  • muscles
  • nervous system
  • digestive system”

Hmmm, so kidney disease can cause you to lose too much potassium, which can then interfere with the proper functioning of your kidneys. Doesn’t sound good to me. But, remember that the condition is congenital and will show up at birth.

Let’s say it does. Then what? According to Verywellhealth at https://www.verywellhealth.com/bartter-syndrome-2860757:

“Treatment of Bartter syndrome focuses on keeping the blood potassium at a normal level. This is done by having a diet rich in potassium and taking potassium supplements if needed. There are also drugs that reduce the loss of potassium in the urine, such as spironolactone, triamterene, or amiloride. Other medications used to treat Bartter syndrome may include indomethacin, captopril, and in children, growth hormone.”

Food rich in potassium? I’m sure bananas came directly into your mind but there are others. I chose to use the National Kidney Foundation’s list of high potassium foods at https://www.kidney.org/atoz/content/potassium since this is a blog about CKD.What foods are high in potassium (greater than 200 milligrams per portion)? The following table lists foods that are high in potassium. The portion size is ½ cup unless otherwise stated. Please be sure to check portion sizes. While all the foods on this list are high in potassium, some are higher than others.

High-Potassium Foods
Fruits Vegetables Other Foods
Apricot, raw (2 medium) dried (5 halves) Acorn Squash Bran/Bran products
Avocado (¼ whole) Artichoke Chocolate (1.5-2 ounces)
Banana (½ whole) Bamboo Shoots Granola
Cantaloupe Baked Beans Milk, all types (1 cup)
Dates (5 whole) Butternut Squash Molasses (1 Tablespoon)
Dried fruits Refried Beans Nutritional Supplements: Use only under the direction of your doctor or dietitian.
Figs, dried Beets, fresh then boiled
Grapefruit Juice Black Beans
Honeydew Broccoli, cooked Nuts and Seeds (1 ounce)
Kiwi (1 medium) Brussels Sprouts Peanut Butter (2 tbs.)
Mango(1 medium) Chinese Cabbage Salt Substitutes/Lite Salt
Nectarine(1 medium) Carrots, raw Salt Free Broth
Orange(1 medium) Dried Beans and Peas Yogurt
Orange Juice Greens, except Kale Snuff/Chewing Tobacco
Papaya (½ whole) Hubbard Squash
Pomegranate (1 whole) Kohlrabi
Pomegranate Juice Lentils
Prunes Legumes
Prune Juice White Mushrooms, cooked (½ cup)
Raisins Okra
Parsnips
Potatoes, white and sweet
Pumpkin
Rutabagas
Spinach, cooked
Tomatoes/Tomato products
Vegetable Juices”

I also have a list of food sensitivities, so I avoid those foods. If you do, too, you might want to cross those foods off your high potassium foods list if you just happen to have Bartter syndrome.

Time for a few personal notes here. Thank you all for your well wishes and good cheer. Via a clinical trial, I have been able to shrink the pancreatic cancer tumor by two thirds and bring my blood tumor marker down to BELOW normal. This raises my chances for a successful Whipple surgery from 50% to 70% and that’s before another round of chemotherapy with radiation added. Hopeful? You bet! I also wanted to remind you that the SlowItDownCKD series makes a wonderful graduation, wedding, and Father’s Day gift for those new to Chronic Kidney Disease, those not new to Chronic Kidney Disease, and those who would like to share CKD with others in their lives.

Until next week,

Keep living your life!

No Longer a Transfusion Virgin

I’ve been thinking about the similarities between Chronic Kidney Disease treatment and Pancreatic Cancer treatment… or, at least, my Pancreatic Cancer treatment. Some are superficial, like going to the Research Institute several days a week for chemotherapy and those on dialysis going to the dialysis center several days a week for dialysis.

Some are not. A current topic of similarity was an eye opener for me. I am 72 years old and have never had a transfusion before last Monday. I’d gone to the Research Institute where I’m part of a clinical trial for a simple non-chemotherapy day checkup. This supposedly two hour appointment turned into almost eight hours. Why?

If you can understand these labs, you’ll know. If not, no problem. You know I’ll explain.

Component Your Value Standard Range
  RBC 2.23 10ˆ6/uL 3.50 – 5.40 10ˆ6/uL
Hemoglobin 6.8 g/dL 12.0 – 16.0 g/dL
Hematocrit 19.7 % 36.0 – 48.0 %
RDW 16.0 % 11.5 – 14.5 %
Platelets 15 K/uL 130 – 450 K/uL

Let’s start at the top of the list. RBC stands for red blood cells. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=5260 tells us:

“Red blood cells: The blood cells that carry oxygen. Red cells contain hemoglobin and it is the hemoglobin which permits them to transport oxygen (and carbon dioxide). Hemoglobin, aside from being a transport molecule, is a pigment. It gives the cells their red color (and their name).

The abbreviation for red blood cells is RBCs. Red blood cells are sometime simply called red cells. They are also called erythrocytes or, rarely today, red blood corpuscles.”

So it makes sense that if RBC is below the standard range (column on the right), the hemoglobin will also be. And where are RBCs produced? Let’s trot on over to the National Institute of Diabetes, Digestive, and Kidney Disease (NIKKD) at https://www.niddk.nih.gov/health-information/kidney-disease/anemia for the answer to that one:

“Healthy kidneys produce a hormone called erythropoietin (EPO). A hormone is a chemical produced by the body and released into the blood to help trigger or regulate particular body functions. EPO prompts the bone marrow to make red blood cells, which then carry oxygen throughout the body.

What causes anemia in chronic kidney disease?

When kidneys are diseased or damaged, they do not make enough EPO. As a result, the bone marrow makes fewer red blood cells, causing anemia. When blood has fewer red blood cells, it deprives the body of the oxygen it needs.”

Now, this is not saying all CKD patients will have anemia, although it is common is the later stages of the disease. Chemotherapy had a lot to do with this, too.

What about this hematocrit? What is that? I went to the University of Rochester’s Health Encyclopedia at https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=hematocrit for help here:

“This test measures how much of your blood is made up of red blood cells.

Normal blood contains white blood cells, red blood cells, platelets, and the fluid portion called plasma. The word hematocrit means to separate. In this test, your red blood cells are separated from the rest of your blood so they can be measured.

Your hematocrit (HCT) shows whether you have a normal amount of red blood cells, too many, or too few. To measure your HCT, your blood sample is spun at a high speed to separate the red blood cells.”

MedicalNewsToday at https://www.medicalnewstoday.com/articles/321568.php helps us understand the RDW or red cell distribution width:

“If the results of a CBC [Gail here: that’s the complete blood count.] show low levels of red blood cells or hemoglobin, this usually suggests anemia. Doctors will then try to determine the cause of the condition using the RDW and other tests.”

So, we’re back to anemia. By the way, cancer is one of the diseases that can cause high numbers on your RDW. CKD is not, but diabetes – one of the primary causes of CKD – is.

I added platelets to the list since they are such an integral part of your blood. MedLinePlus at https://medlineplus.gov/plateletdisorders.html explains succinctly just what they are and what they do:

“Platelets, also known as thrombocytes, are small pieces of blood cells. They form in your bone marrow, a sponge-like tissue in your bones. Platelets play a major role in blood clotting. Normally, when one of your blood vessels is injured, you start to bleed. Your platelets will clot (clump together) to plug the hole in the blood vessel and stop the bleeding. You can have different problems with your platelets:

If your blood has a low number of platelets, it is called thrombocytopenia. This can put you at risk for mild to serious bleeding. The bleeding could be external or internal. There can be various causes. If the problem is mild, you may not need treatment. For more serious cases, you may need medicines or blood or platelet transfusions….”

I had my second infusion of platelets along with my first transfusion last week.

I’ve offered a multitude of definitions today. The point here is that both CKD patients and chemotherapy patients (and others suffering from a host of maladies) may need transfusions.

Right. I haven’t discussed what a transfusion is yet. Dictionary.com at https://www.dictionary.com/browse/transfusion defines it a little simplistically for us:

“the direct transferring of blood, plasma, or the like into a blood vessel.”

The MayoClinic at https://www.mayoclinic.org/tests-procedures/blood-transfusion/about/pac-20385168 adds:

“Your blood will be tested before a transfusion to determine whether your blood type is A, B, AB or O and whether your blood is Rh positive or Rh negative. The donated blood used for your transfusion must be compatible with your blood type.”

That’s when we discovered my son-in-law and I have the same blood type. Nice to know… just in case, you understand.

Before I leave you today, I want to remind my USA readers that this is Memorial Day. Having married a veteran, I now understand that we are honoring those who gave their saves to preserve ours no matter how long ago or how recent. Please give them a moment of your thoughts.

Until next week,

Keep living your life!

Don’t Know Much about FSGS…

Being on chemotherapy is very tiring, so I stay home a lot and delve into anything that catches my eye, like FSGS. I’ve seen the letters before and had sort of a vague idea of what it might be, but what better time to explore it and whatever it may have to do with Chronic Kidney Disease than now?

Let’s start at the beginning. FSGS is the acronym for focal segmental glomerulosclerosis. Anything look familiar? Maybe the ‘glomerul’ part of glomerulosclerosis? I think we need to know the definition of glomerulosclerosis to be able to answer that question. The National Institutes of Health’s U.S. National Library of Congress’s Medline Plus at https://medlineplus.gov/ency/article/000478.htm defines it this way:

“Focal segmental glomerulosclerosis is scar tissue in the filtering unit of the kidney. This structure is called the glomerulus. The glomeruli serve as filters that help the body get rid of harmful substances. Each kidney has thousands of glomeruli.

‘Focal’ means that some of the glomeruli become scarred. Others remain normal. ‘Segmental’ means that only part of an individual glomerulus is damaged.”

So, we do know what the ‘glomerul’ part of glomerulosclerosis means. It refers to the same filters in the kidneys we’ve been discussing for the past eleven years: the glomeruli. This former English teacher can assure you that ‘o’ is simply a connective between the two parts of the word. ‘Sclerosis’ is a term you may have heard of in relation to the disease of the same name, the one in which the following occurs (according to Encarta Dictionary):

“the hardening and thickening of body tissue as a result of unwarranted growth, degeneration of nerve fibers, or deposition of minerals, especially calcium.”

Wait a minute. When I first started writing about CKD, I approached NephCure Foundation… not being certain what it was, but seeing Neph in its name. They were kind enough to ask me to guest blog for them on 8/21/11. By the way, as of August 15, 2014, NephCure Foundation became NephCure Kidney International. That makes the connection to our kidneys much more clear.

Back to FSGS. The NephCure Kidney International website at https://nephcure.org/ offers us this information:

“How is FSGS Diagnosed?

FSGS is diagnosed with renal biopsy (when doctors examine a tiny portion of the kidney tissue), however, because only some sections of the glomeruli are affected, the biopsy can sometimes be inconclusive.

What are the Symptoms of FSGS?

Many people with FSGS have no symptoms at all.  When symptoms are present the most common include:

Proteinuria – Large amounts of protein ‘spilling’ into the urine

Edema – Swelling in parts of the body, most noticeable around the eyes, hands and feet, and abdomen which causes sudden weight gain.

Low Blood Albumin Levels because the kidneys are removing albumin instead of returning it to the blood

High Cholesterol in some cases

High Blood Pressure in some cases and can often be hard to treat

FSGS can also cause abnormal results of creatinine in laboratory tests. Creatinine is measured by taking a blood sample. Everyone has a certain amount of a substance called creatinine floating in his or her blood. This substance is always being produced by healthy muscles and normally the kidneys constantly filter it out and the level of creatinine stays low. But when the filters become damaged, they stop filtering properly and the level of creatinine left in the blood goes up.”

Whoa! Look at all the terms we’ve used again and again in the last eleven years of SlowItDownCKD’s weekly blog: proteinuria, edema, albumin, cholesterol, high blood pressure, and creatinine. This is definitely something that we, as CKD patients, should know about.

Okay. Let’s say you are diagnosed with FSGS. Now what? The National Kidney Organization at https://www.kidney.org/atoz/content/focal was helpful here:

How is FSGS treated?

The type of treatment you get depends on the cause. Everyone is different and your doctor will make a treatment plan that is right for your type of FSGS. Usually, treatments for FSGS include:

  • Corticosteroids (often called “steroids”)
  • Immunosuppressive drugs
  • ACE inhibitors and ARBs
  • Diuretics
  • Diet change

Corticosteroids and immunosuppressive drugs: These medications are used to calm your immune system (your body’s defense system) and stop it from attacking your glomeruli.

ACE inhibitors and ARBs: These are blood pressure medications used to reduce protein loss and control blood pressure.”

Diuretics: These medications help your body get rid of excess fluid and swelling. These can be used to lower your blood pressure too.

Diet changes:  Some diet changes may be needed, such as reducing salt (sodium) and protein in your food choices to lighten the load of wastes on the kidneys.”

I think we need another definition here. Yep, it’s Plasmapheresis. Back to the Encarta Dictionary.

“a process in which blood taken from a patient is treated to extract the cells and corpuscles, which are then added to another fluid and returned to the patient’s body.”

Let’s go back to The NephCure Kidney International website at https://nephcure.org/ for a succinct summary of FSGS Facts.

“More than 5400 patients are diagnosed with FSGS every year, however, this is considered an underestimate because:

  • a limited number of biopsies are performed
  • the number of FSGS cases are rising more than any other cause of Nephrotic Syndrome…

NephCure estimates that there are currently 19,306 people living with ESRD due to FSGS…, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children,… and it is the second leading cause of kidney failure in children…

NephCure estimates that people of African ancestry are at a five times higher diagnosis rate of FSGS…

About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation…

Approximately 1,000 FSGS patients a year receive kidney transplants… however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients….”

As prevalent and serious as this sounds, please remember that FSGS is a rare kidney disease. Knowing what we now know just may help you keep your eyes open for it.

Until next week,

Keep living your life!

Chemo and My Kidneys

 As most of you know, I am extremely protective of my kidneys. When I was first diagnosed with Chronic Kidney Disease 11 years ago, my eGFR was only 39. Here’s a quick reminder of what the eGFR is from my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

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

39. That’s stage 3B, the lower part of stage 3B. During the intervening 11 years, I’ve been able to raise it to 50 (and sometimes higher for short periods) via vigorously following the renal diet, exercising, avoiding stress as much as possible, maintaining adequate sleep, and paying strict attention to the medications prescribed for me. While the medications were the ones I had been taking for high blood pressure prior to being diagnosed with CKD, they worked in my favor.

This excerpt from The National Center for Biotechnology Information (NCBI) part of the United States National Library of Medicine (NLM), a branch of the National Institutes of Health (NIH) at https://www.ncbi.nlm.nih.gov/books/NBK492989/ will explain why:

“The decision of whether to reduce blood pressure levels in someone who has chronic kidney disease will depend on

  • how high their blood pressure is (when untreated),
  • whether they have diabetes, and
  • how much protein is in their urine (albumin level).

A person with normal blood pressure who doesn’t have diabetes and hardly has any albumin in their urine will be able to get by without using any blood-pressure-lowering medication. But people who have high blood pressure, diabetes or high levels of albumin in their urine are advised to have treatment with ACE inhibitors (angiotensin-converting enzyme inhibitors) or sartans (angiotensin receptor blockers). In people who have diabetes, blood-sugar-lowering medication is also important.”

When I was first diagnosed with pancreatic cancer early last month, it changed my medical priorities. With my nephrologist’s blessing, my primary focus was the cancer… not my kidneys. It took constant reminders to myself not to be so quick to say no to anything that I thought would harm my kidneys. In other words, to those things I’d been saying no to for the last 11 years.

For example, once diagnosed with CKD, I ate very little protein keeping to my five ounce daily limitation. Not anymore. Protein is needed to avoid muscle wasting during chemotherapy with a minimum requirement of eight ounces a day. I even tried roast beef and other red meats. After 11 years, they no longer agreed with me so I eat ground turkey, chicken, cheese, and am considering soy.

Another change: I preferred not to eat carbohydrates, but was warned not to lose weight if I could help it. All of a sudden I’m eating Goldfish, bread, and pasta. I can’t say that I’m enjoying them, but I am keeping my weight loss to a minimum. Other limitations like those on potassium and phosphorous have also gone by the wayside. I’ve eaten every childhood favorite, foods that I’ve avoided for the last 11 years, and anything that might look tempting in the last month, but none of them really taste that good. I like the foods on the renal diet now.

Oh, the only thing I have not increased is salt. My daughter takes me to my chemotherapy sessions. There’s a Jewish style restaurant across the street and we showed up early one day. I wanted to try a toasted bagel with butter, the way I ate it before CKD. The damned thing was salty! I hadn’t expected that.

Back to chemo and my kidneys. I admit it. I was nervous. What was this combination of poisons going to do to my kidneys? If it was so caustic that I had to have a port in place so that it wouldn’t be injected directly into my veins for fear of obliterating them, what about my kidneys?

I anxiously awaited my first Comprehensive Blood Panel, the blood test that includes your GFR. Oh, oh, oh! My kidney function had risen to 55 and my creatinine had lowered to 1.0. Let me explain just how good this was.

A GFR of 55 is the higher part of stage 3A. 60 is where stage 2 of CKD begins. My kidneys were functioning better on chemo. And the creatinine? Let’s get a quick definition of that first. According to The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/tests-diagnosis:

“Creatinine. Creatinine is a waste product from the normal breakdown of muscles in your body. Your kidneys remove creatinine from your blood. Providers use the amount of creatinine in your blood to estimate your GFR. As kidney disease gets worse, the level of creatinine goes up.”

Yet, mine went down. How? I asked and it was explained that all the hydration used to clear my veins of the caustic chemotherapy had worked this magic. I had two hours of hydration before the chemo-therapy  itself, two hours afterward, and another two hours the next day. My kidneys had never been this hydrated!

But wait, there’s more. I have diabetes. The pancreas is the organ that produces insulin. Could my diabetes be from the tumor blocking the production of insulin by my pancreas? I truly don’t know, but my glucose level is within the standard range for the first time since I’ve been diagnosed with diabetes.

Would I recommend chemotherapy to raise your GFR, and lower your creatinine and your glucose level? Of course not. But I am feeling so very lucky that my kidneys are not coming to any harm during the chemotherapy necessary to save my life. I can’t begin to tell you how relieved I am.

Until next week,

Keep living your life!

Oh, the Places You’ll Go!

Thank you to Dr. Seuss for lending us the title of today’s blog. Oh, you haven’t heard of him yet? According to Encyclopaedia Britannica at https://www.britannica.com/biography/Dr-Seuss:

“Dr. Seuss, pseudonym of Theodor Seuss Geisel, (born March 2, 1904, Springfield, Massachusetts, U.S.—died September 24, 1991, La Jolla, California), American writer and illustrator of immensely popular children’s books, which were noted for their nonsense words, playful rhymes, and unusual creatures.”

And why begin the blog with the title of his book you ask. Last month, I received an email from booknowmed.com. Now, I’m not endorsing this new company since I’m not on dialysis and so have not made use of their services myself. However, after reading about the difficulties my dialysis readers were having finding a clinic while they traveled, I was intrigued. Could this be another way to lessen the burden of being on dialysis?

This is from that email:

“What is booknowmed.com?

Whether you travel for holidays or for work, with booknowmed.com you can now find dialysis clinics that have availability for your treatment dates and book your treatments on the spot, anywhere in the World. And most importantly, booknowmed.com is FREE for patients.

  • Browse 440+ dialysis centers, in 380 destinations across 5 continents.
  • Find clinics that have availability based on your search criteria.
  • Know the price of treatment, before booking.
  • See ratings and read reviews from previous patients at the clinic.
  • Book your treatments on the spot in safety.
  • No booking fees, no hidden costs.
  • Track the progress of your booking, directly from your account.

Booknowmed.com is supported by the European Union and 60 national Kidney Patient Associations globally.”

Based on this alone, I asked Vassia Efstathiou, the User Experience Manager, if she’d be interested in guest blogging… and she was.  This is what she had to say, with just a bit of editing from me.

“Free booking engine for dialysis treatments? Dream or reality?

Travelling while on dialysis is a challenge on its own. Consider having to research, book and coordinate your dialysis treatments abroad. This process can be particularly stressful for dialysis patients, especially when faced with language barriers, lack of information – like the availability of clinics and cost of treatments- and, of course, safety concerns.

Many dialysis patients know this already but the power of the Internet alone cannot do much in this case. So it is definitely good news to hear that the first booking engine for holiday dialysis is live, and even better news to see that it actually works. Let alone the fact that it is free for patients!

Since its launch, thousands of dialysis patients have used booknowmed.com to book more than 27,000 treatments around the globe.

booknowmed.com allows dialysis patients to browse, find and book their dialysis treatments anywhere in the World. We are talking literally – anywhere.

By visiting booknowmed.com you will be able to browse more than 450 dialysis centers in 380 destinations, across five continents. This includes standard holiday options like Spain, Greece, and Turkey, as well some less ordinary destinations like Bali, Sri Lanka, Miami, Brazil and Argentina. Cuba, Barbados, and Curacao are coming up this month.

Bookings are completely free for patients, meaning there are no booking or other hidden costs. Overall the platform is very user-friendly and the booking process is very simple:

  1. Patients select their treatment dates and desired destination.
  2. They are then presented with a list of the clinics that match their search criteria and – most importantly – have availability for the requested dates.
  3. Booking is completed after a simple registration process, which is there for safety reasons. The process takes three minutes and includes registering the patient’s full name, email, and telephone number.

But let’s examine what differentiates booknowmed.com to the online directories currently available to dialysis patients.

Firstly, we are talking about a booking engine where you can book your treatments on the spot. In contrast to online directories, booknowmed.com allows you to know the availability and price before booking. You can select your exact treatment dates and preferred shift, and complete your booking without picking up the phone or waiting for a reply that takes weeks. Consider that the average booking time on booknowmed.com is six minutes compare to 15 days, the average booking time when you contact the clinic directly or go through a directory service.

Secondly, you have a wide variety of options to choose from, not only in terms of destination but also in terms of the type of the medical facility. booknowmed.com offers the largest network of independent dialysis centers. From global leaders – like Diaverum – to public and private hospitals as well as independent state-of-the-art clinics around the globe.

Thirdly, the simplicity of the booking process itself.

And last, but definitely not least, the great features offered to patients, which promote transparency and allow them to have all the information in hand before booking. These include:

  • Know the price of treatment before booking.
  • Use smart filters to narrow down your research. If you are an EU patient, for example, you can select to be presented with only the clinics that accept the EHIC.
  • See ratings and read reviews written by real patients who have completed treatment at this particular clinic.
  • Track the progress of your booking through your account. All the details of the booking including the exact time frame of the treatment, contact details of the clinic, and even a map with instructions on how to get there can be found in your account.

booknowmed.com was created by professionals with years of expertise in renal healthcare and the goal to serve a true need for patients. It has received the support of the European Union as well as of national kidney patient associations globally.

The company has plans to expand the functionalities of the platform, with the goal to become a 360o platform serving various everyday needs of renal patients, from nutrition and supplements to an online database and the online exchange of medical reports.

booknowmed.com is the living proof that we have entered a new era for dialysis patients, who can now find and book treatments abroad, with no hassle, no risk, and no language barriers.

Gail here, hoping this is exactly what you’ve been looking for to make your travel while on dialysis an easier experience for you.

Until next week,

Keep living your life!

 

CKD and Me

Okay, so I was finally ready to give up World Kidney Day and National Kidney Month. Maybe it’s time to give up the 1in9 chapter contribution, too. Since each contributing author also had their biography accompanying their chapter, I think the best way to do that is to print the biography… although it’s all me, me, me. Indulge me, please.

*****

Ms. Rae-Garwood’s writing started out as a means to an end for a single parent with two children and a need for more income than her career as a NYC teacher afforded. Gail retired from both college teaching and acting – after a bit of soul searching about where her CKD limited energy would be best spent – early in 2013. Since her diagnose, Ms. Rae-Garwood writes most often about Chronic Kidney Disease, although she does write fiction. She has a three time award winning weekly blog (Surprise!) about this topic at https://gailraegarwood.wordpress.com and social media accounts as @SlowItDownCKD.

*****

Hmmm, it seems to me I’ve done a lot more with Chronic Kidney Disease awareness advocacy since I started with this in 2010. Let’s see what else there is. Aha! These are on my website at www.gail-raegarwood.com.

 

Arizona Health & Living  (West Valley)  6/2018

 

MyTherapy Guest Blog    3/8/18

eCareDiary: Coping with Chronic Kidney  Disease  3/06/18

NephJC: One More Patient Voice on CKD Staging and Precision Medicine  12/08/16

 

Center for Science in the Public Interest: Nutrition Action Healthletter   9/16

New York State United Teachers: It’s What We Do   8/9/16

American Kidney Fund: Slowing DownCKD – It Can Be Done   7/14/16

The Edge Podcast  5/19/16

Dear Annie   3/10/14

Renal Diet Headquarters Podcast   2/12/14

 

Accountable Kidney Care Collaborative: Bob’s Blog   1/23/14

Wall Street Journal: Patients Can Do More to Control Chronic Conditions  1/13/14

The Neuropathy Doctor’s News   9/23/13

Series of five Monthly CKD education classes in The Salt River Pima-Maricopa

Indian Community   9/12/13

 

KidneySteps: Gail Rae and SlowItDown  9/11/13

Salt River Pima-Maricopa Indian Community: 4th Annual Men and Women’s Gathering  8/29/13

National Kidney Foundation: Staying Healthy  6/6/13

KidneySteps: Learning Helps with CKD    7/04/12

Life Options Links for Patients and Professionals   5/30/12

It Is Just What It Is    3/9/12

Online with Andrea    03/07/12

 

Working with Chronic Illness  2/17/12

 

Libre Tweet Chat with Gail Rae   1/10/12

Kevinmd.com   1/1/12

Improve Your Kidney Health with Dr. Rich Snyder, DO   11/21/11

Glendale Community College Gaucho Gazette   8/22/11

 

The NephCure Foundation   8/21/11

Authors Show Radio    8/8/11

Renal Support Network: Another 30 Years  1/11/10

Working with Chronic Illness: Are You Aching to Write    1/11/10

I’m going to keep today’s blog very short so you have the time to click though on the hyperlinked podcasts and articles. When I was teaching college, my students thoroughly enjoyed the time to choose what they’d like to hear or read from a prescribed list. I hope it’s the same for you.

Until next week,

Keep living your life!

I’m Finally Ready to Let National Kidney Month Go

As you already know, I’ve been posting the chapter I contributed to the book 1in9 as my contribution to National Kidney Month. This will probably be the final post of that chapter, unless I decide to post the biography that goes along with the chapter at a later date.

Most of you are aware that I now have pancreatic cancer and the chemo effects are getting in my way. I’m hoping that I’ll not be feeling them so severely in the near future and will be able to research some new material for you. Right now, that’s just not possible. You may have noticed that my Twitter, Instagram, and Facebook pages no longer contain original posts. That’s due to the same reason.

But let’s complete the book chapter:

When I was diagnosed back in 2008, there weren’t that many reader friendly books on anything having to do with CKD. Since then, more and more books of this type have been published. I’m laughing along with you, but I don’t mean just SlowItDownCKD 2011, SlowItDownCKD 2012 (These two were The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, until I realized how unwieldy both the book and the title were – another learning experience), SlowItDownCKD 2013, SlowItDownCKD 2014 (These two were formerly The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2), SlowItDownCKD 2015, SlowItDownCKD 2016, and SlowItDownCKD 2017. By the way, I’m already working on SlowItDownCKD 2018. Each book contains the blogs for that year.

I include guest blogs or book review blogs to get a taste of the currently available CKD news. For example, 1in9 guest blogged this year. Books such as Dr. Mandip S. Kang’s, The Doctor’s Kidney Diets (which also contains so much non-dietary information that we – as CKD patients – need to know), and Drs. Raymond R. Townsend and Debbie L. Cohen’s 100 Questions & Answers about Kidney Disease and Hypertension.

I miss my New York daughter and she misses me, so we sometimes have coffee together separately. She has a cup of coffee and I do at the same time. It’s not like being together in person, but it’s something. You can find support the same way via Facebook Chronic Kidney Disease Support Groups. Some of these groups are:

Chronic Kidney Disease Awareness

Chronic Kidney Disease in India

CKD (Kidney Failure) Support Group International

Dialysis & Kidney Disease

Friends Sharing Positive Chronic Kidney Disease

I Hate Dialysis

Kidney Disease Diet Ideas and Help

Kidney Disease Ideas and Diets1

Kidney Disease is not a Joke

Kidney Disease, Dialysis, and Transplant

Kidney Warriors Foundation

Kidneys and Vets

Mani Trust

Mark’s Private Kidney Disease Group

P2P

People on Dialysis

Sharing your Kidney Journey

Stage 3 ‘n 4 Kidneybeaners Gathering Place

The Transplant Community Outreach

UK Kidney Support

Women’s Renal Failure

Wrap Up Warm for Kidney Disease

What I hit over and over again in the blogs is that diabetes is the foremost cause of CKD with hypertension as the second most common cause. Simple blood and urine tests can uncover your CKD – if you’re part of the unlucky 96% of those in the early stages of the disease who don’t know they have it.

Each time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools you have at your disposal to help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

I was surprised to discover that writing my SlowItDownCKD book series, maintaining a blog, Facebook page, Twitter, Instagram, and Pinterest accounts of the same name are not enough for me for me to spread the word about CKD screening and education. I’m determined to change this since I feel so strongly that NO ONE should have this disease and not be aware of it.

That’s why I’ve brought CKD awareness to every community that would have me: coffee shops, Kiwanis Clubs, independent bookstores, senior citizen centers, guest blogging for the likes of The American Kidney Fund and The National Kidney Foundation, being interviewed by publications like the Wall Street Journal’s Health Matters, The Center for Science in The Public Interest, and The United Federation of Teachers’ New York Teacher, and on podcasts such as The Renal Diet Headquarters, Online with Andrea, The Edge Podcast, Working with Chronic Illness, and Improve Your Kidney Health.

I’ve been very serious about sharing about CKD before it advances to end stage… meaning dialysis. To that end, I gathered a team for the National Kidney Foundation of Arizona Kidney Walk one year. Another year, I organized several meetings at the Salt River Pima-Maricopa Indian Community. Education is vital since so many people are unaware they even have the disease.

You can slow down the progression of the decline of kidney function. I have been spending a lot of time on my health and I’m happy to say it’s been paying off. There are five stages. I’ve stayed at the middle one for over a decade despite having both high blood pressure and diabetes. That’s what this is about. People don’t know about CKD. They get diagnosed. They think they’re going to die. Everybody dies, but it doesn’t have to be of CKD. I am downright passionate about people knowing this.

Thanks for taking the time to finish the chapter. The more people who know about Chronic Kidney Disease, the more people can tell others about it. I’d hate for anyone to be part of the 90% of those with CKD who don’t know they have it.

Until next week,

Keep living your life!

National Kidney Month Extended

The chapter I contributed to 1in9 goes on beyond National Kidney Month, so since I think every day should be World Kidney Day, I decided to just keep printing it until it was finished. Gotcha! Bet you thought I was going to write every month should be National Kidney Month. Although, that’s not a bad idea either. So, for those of you just tuning in, this is actually part three of that chapter. You can just scroll back on the blog to read the first two parts. Ready? Let’s go.

*****

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

But, I had to be oh-so-vigilant with other medical practitioners. One summer I had four different infections and had to quickly research the medications prescribed in the emergency room. One hospital insisted I could take sulfa drugs because I was only stage 2 at the time. My nephrologist disagreed. They also prescribed a pain killer with acetaminophen in it, another no-no for us.  I didn’t return to them when I developed the other infections.

My experience demonstrates that you can slow down CKD. I was diagnosed at stage 3 and I am still there, over a decade later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 72 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

At the time of my diagnosis, I was a college instructor. My favorite course to teach was Research Writing. I was also a writer with an Academic Certificate in Creative Non-Fiction and a bunch of publications under my belt. It occurred to me that I couldn’t be the only one who had no clue what this new-to-me disease was and how to handle living with it. I knew how to research and I knew how to write, so why not share what I learned?

I wasn’t sure of what had to be done to share or how to do it. I learned by trial and error. People were so kind in teaching me, pointing out what might work better, even suggesting others that might be interested in what I was doing. I love people. I’d written quite a few how to(s), study guides, articles, and literary guides so the writing was not new to me. I asked for suggestions as to what to do with my writing and that’s when I learned about unscrupulous, price gouging vanity publishers. I’m still paying for the unwitting mistakes I made, but they were learning experiences.

My less-than-stellar experience with being diagnosed and the first nephrologist are what prompted me to write What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Why, I wondered, should any new CKD patient be as terrified as I was? Of course, I constantly remind my readers that I’m not a doctor and they need to consult their nephrologists or renal dietitians before making any changes to their regiment.

I didn’t feel… well, done with sharing or researching once I finished the book so I began writing a weekly blog: SlowItDownCKD. Well, that and because a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their communities. It would work!

But first I had to teach myself how to blog. I made some boo-boos and lost a bunch of blogs until I got it figured out. So why do I keep blogging? There always seems to be more to share about CKD. Each week, I wonder what I’ll write… and the ideas keep coming. I now have readers in something like 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor. The blog has won several awards. Basically, that’s because I write in a reader friendly manner. After all, what good is all my researching if no one understands what I’m writing?

Non-tech savvy readers asked if I could print the blogs; hence, the birth of the SlowItDownCKD series of books. Some people think SlowItDownCKD is a business; it’s not. Some think it’s a profit maker; it’s not. So, what is it you ask? It’s a vehicle for spreading awareness of Chronic Kidney Disease and whatever goes along with the disease. Why do I do it? Because I had no idea what it was, nor how I might have prevented the disease, nor how to deal with it effectively once I was diagnosed. I couldn’t stand the thought of others being in the same position.

One of my daughters taught me about social media. What???? You could post whatever you wanted to? And Facebook wasn’t the only way to reach the public at large? Hello, LinkedIn. A friend who is a professional photographer asked me why I wasn’t using my fun photography habit to promote awareness. What??? You could do that? Enter Instagram. My step-daughters love Pinterest. That got me to thinking and suddenly SlowItDownCKD had a Pinterest account. Then someone I met at a conference casually mentioned she offers Twitter workshops. What kind of workshops? She showed me how to use Twitter to raise CKD awareness.

*****

There’s more and you’ll get to read it next week. I hope you’re enjoying your look into how I entered the world of Chronic Kidney Disease Awareness Advocacy.

Until next week,

Keep living your life!

To Continue…

National Kidney Month is just flying by. This is actually the last week and I doubt I’ll be able to post the rest of the 1in9 chapter before next month. But then again, it’s always Kidney Month for those of us with Chronic Kidney Disease. By the way, thank you to the reader who made it a point of telling me she can’t wait to read the rest of the chapter. Sooooo, let’s get started!

***

Nephrologist switch. The new one was much better for me. He explained again and again until I understood and he put up with a lot of verbal abuse when this panicky new patient wasn’t getting answers as quickly as she wanted them. Luckily for me, he graciously accepted my apology.

After talking to the nephrologist, I began to realize just how serious this disease was and started to wonder why my previous nurse practitioner had not caught this. When I asked her why, she responded, “It was inconclusive testing.” Sure it was. Because she never ordered the GFR tested; that had been incidental! I feel there’s no sense crying over spilled milk (or destroyed nephrons, in this case), but I wonder how much more of my kidney function I could have preserved if I’d known about my CKD earlier.

According to the Mayo Clinic, there are 13 early signs of chronic kidney disease. I never experienced any of them, not even one. While I did have high blood pressure, it wasn’t uncontrollable which is one of the early signs. Many, like me, never experienced any noticeable symptoms. Unfortunately, many, like me, may have had high blood pressure (hypertension) for years before CKD was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD. I find it confusing that uncontrollable high blood pressure may be an early sign of CKD, but hypertension itself is the second leading cause of CKD.

Here’s the part about my researching. I was so mystified about what was happening and why it was happening that I began an extensive course of research. My nephrologists did explain what everything meant (I think), but I was still too shocked to understand what they were saying. I researched diagnoses, descriptions of tests, test results, doctors’ reports, you name it. Slowly, it began to make sense, but that understanding only led to more questions and more research.

You’ve probably already guessed that my world changed during that first appointment. I began to excuse myself for rest periods each day when I went back East for a slew of family affairs right after. I counted food groups and calories at these celebrations that summer. And I used all the errand running associated with them as an excuse to speed walk wherever I went and back so I could fit in my exercise. Ah, but that was just the beginning.

My high blood pressure had been controlled for 20 years at that time, but what about my diet? I had no clue there was such a thing as a kidney diet until the nutritionist explained it to me. I’m a miller’s granddaughter and ate anything – and I do mean anything – with grain in it: breads, muffins, cakes, croissants, all of it. I also liked lots of chicken and fish… not the five ounces per day I’m limited to now.

The nutritionist explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out went my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

I was in a new food world. I’d already known about restricting sodium because I had high blood pressure, but these other things? I had to keep a list of which foods contain them, how much was in each of these foods, and a running list of how much of each I had during the day so I knew when I reached my limit for that day.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last decade: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them. I take another drug for my brand new diabetes. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I was a dancer. Wasn’t that enough? Uh-uh, I had to learn about cardio and strength training exercise, too. It was no longer acceptable to be pleasantly plumb. My kidneys didn’t need the extra work. Hello to weights, walking, and a stationary bike. I think I took sleep for granted before CKD, too, and I now make it a point to get a good night’s sleep. A sleep apnea device improved my sleep—and my kidney function rose.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. The result was that I ended up graciously retiring from both acting and teaching at a local college, which gave me more time to work on my CKD awareness advocacy.

***

There’s so much more to tell you about my personal CKD journey… and you’ll read more of it next week. Although, I should remind you that the entire book is available in print and digital on both Amazon.com and B&N.com, just as the entire SlowItDownCKD series of books is.

Until next week,
Keep living your life!

From a Book…

I was trying to figure out a new angle from which to write about Chronic Kidney Disease during National Kidney Month and decided that my chapter in the newly released 1in9 just might be the way.

By the way, I really don’t like shopping, but did so for a ‘fancy blouse’ for the fancy book launch. The day of the launch turned out to be the day I unexpectedly had anesthesia and I ended up not being able to go. From the pictures I’ve seen of the event, it was a fun event. Now I need another fun event to wear that ‘fancy blouse’ to.  After all, we can’t let a dreaded shopping trip go to waste, can we?

Without further ado, I present the first part of my 1in9 chapter:

My name is Gail Rae-Garwood. I like to think of myself as an average older woman with two adult daughters, a fairly recent husband, and a very protective dog. But I’m not. What makes me a little different is that I have Chronic Kidney Disease… just like the estimated 30 million or 15% of the adult population in the United States. Unlike 96% of those in the early stages of the disease, I know my kidneys are not functioning well.

Once upon a time, a long, long time ago, before I’d ever heard the word nephrology, I paid no attention to my kidneys. I had just a vague idea of where they were located because I had big brothers. Every time they watched boxing, one or the other of them would yell, “Oh! Right in the kidneys!” when one guy hit the other on the back, sort of near the waist.  My mother attempted to feed us kidney beans once or twice, but three voices chorusing the 1950’s equivalent of “Uh, gross!” was enough to convince her they weren’t that necessary. My father had a friend who’d moved up in the world and had a kidney shaped pool. Of course, I never had a bird’s eye view of that as a child. So, we were a family pretty much ignorant about kidneys.

When I grew up, I never let my children watch boxing; it was too violent. I never even tried to feed them kidney beans, probably due to some residual abhorrence left over from my own childhood. I had no friends with kidney shaped pools, but I had flown in an airplane and could recognize one if we were flying low. That was the sum total of my kidney education. I didn’t even recall if they were covered in high school biology. My daughters, now grown women, said they were, but I didn’t remember anything about that.

I was blindsided over a decade ago. That’s when I started seeing a new doctor solely because she was both on my insurance plan and so much closer to home than the one I’d been seeing. It seems everything is at least half an hour away in Arizona; her office wasn’t. As a diligent primary care physician, she ordered a whole battery of tests to verify what she found in my files which, by the way, contained a kidney function reading (called the GFR) of 39%. That was something I’d never been told about.

39%. I’d been a high school teacher for 35 years at that point. If a student had scored 39% on a test, we would have talked and talked until we had gotten to the root of the problem that caused such a low score. No one talked to me about my low kidney function until I changed doctors.

“That’s not normal,” said my new doctor as she looked at my blood test results.

I made the supreme effort of tearing my eyes away from the height and weight chart to ask, “What’s not normal?”

“Your GFR,” she told me.  I looked at her blankly. (In retrospect, I can understand how hard it probably was for her not to laugh at my empty eyes and a face without a shred of interest showing on it.) I said nothing. She said nothing.

Finally, I asked, “What’s that?”  She gave me a simple explanation with no indication that I should panic in any way, but of course I did.

“It’s what!  It’s below normal?  My kidneys aren’t functioning to full capacity? Why wasn’t I told? What do I do now? How do I fix the problem? I want them at 100%.”

Her voice rose over mine in a steady, sure manner. “This does not mean there is a problem. It means you must go to a specialist to see if there really is a problem.”

“Oh.” I didn’t believe her, but she not only talked, she had me in a nephrologist’s (kidney and hypertension specialist) office the next day. That’s when I started worrying. Who gets an appointment with a specialist the very next day? I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow down the progression in the decline of my kidney function immediately.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when CKD patients are most shocked, confused, and maybe even depressed—and the stages at which they have a workable chance of doing something to slow down the progression in the decline of their kidney function.

This first nephrologist might have been reassuring, but I’ll never know. I was terrified; he was patriarchal. All I heard was, “I’ll take care of your kidneys. You just do as I say,” or something to that effect.

Nope, wrong doctor for me. I wanted to know how medication, diet, exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching. (More about that later.) You see, I’d already had a terrific Dad who’d known better than to ask me to give up control of myself. I didn’t need a doctor assuming his role… especially in a way I resented.

… to be continued. (This will take several weeks. It is a chapter in book, so it’s longer than my usual 1,000 or so word blog.)

Until next week,

Keep living your life!

World Kidney Day, 2019

Will you look at that? The world keeps moving on no matter what’s going on in our personal lives. And so, I recognize that Thursday of this week is World Kidney Day. In honor of this occasion, I’ve chosen to update last year’s World Kidney Day blog… so sit back and enjoy the read.

…World Kidney Day? What’s that? I discovered this is a fairly new designation. It was only thirteen years ago that it was initiated.

 

According to http://worldkidneyday.org,

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

Sound familiar?  That’s where I’m heading with What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; SlowItDownCKD 2011; SlowItDownCKD 2012; SlowItDownCKD 2013; SlowItDownCKD 2014; SlowItDownCKD 2015; SlowItDownCKD 2016; SlowItDownCKD 2017; Facebook; Instagram; LinkedIn; Pinterest; Twitter; and this blog. We may be running along different tracks, but we’re headed in the same direction.

The 59 year old International Society of Nephrology (ISN) – a non-profit group spreading over 155 countries – is one part of the equation for their success.  Another is the International Federation of Kidney Foundations with membership in over 40 countries. Add a steering committee and The World Kidney Day Team and you have the makings of this particular concept….

According to their website at https://www.theisn.org/advocacy/world-kidney-day :

“The mission of World Kidney Day is to raise awareness of the importance of our kidneys to our overall health and to reduce the frequency and impact of kidney disease and its associated health problems worldwide.

Objectives:

  • Raise awareness about our ‘amazing kidneys’
  • Highlight that diabetes and high blood pressure are key risk factors for Chronic Kidney Disease (CKD)
  • Encourage systematic screening of all patients with diabetes and hypertension for CKD
  • Encourage preventive behaviors
  • Educate all medical professionals about their key role in detecting and reducing the risk of CKD, particularly in high risk populations
  • Stress the important role of local and national health authorities in controlling the CKD epidemic.”

While there are numerous objectives for this year’s World Kidney Day, the one that lays closest to my heart is this one: ‘Encourage systematic screening of all patients with diabetes and hypertension for CKD.’

Back to World Kidney Day’s website at https://www.worldkidneyday.org  now, if you please.

This year’s theme is Kidney Health for Everyone Everywhere.

Their site offers materials and ideas for events as well as a map of global events. Prepare to be awed at how wide spread World Kidney Day events are.

Before you leave their page, take a detour to Kidney FAQ (Frequently Asked Questions) on the toolbar at the top of the page.  You can learn everything you need to know from what the kidneys do to what the symptoms (or lack thereof) of CKD are, from how to treat CKD to a toolbox full of helpful education about your kidneys to preventative measures.

If only my nurse practitioner had been aware of National Kidney Month or World Kidney Day, she could have warned me immediately that I needed to make lifestyle changes so the decline of my kidney function could have been slowed down earlier. How much more of my kidney function would I still have if I’d known earlier? That was a dozen years ago. This shouldn’t still be happening… but it is.

I received a phone call a few years ago that just about broke my heart.  Someone very dear to me sobbed, “He’s dying.” When I calmed her down, she explained a parent was sent to a nephrologist who told him he has end stage renal disease and needed dialysis or transplantation immediately.

I pried a little trying to get her to admit he’d been diagnosed before end stage, but she simply didn’t know what I was talking about. There had been no diagnose of Chronic Kidney Disease up to this point. There was diabetes, apparently out of control diabetes, but no one impressed upon this man that diabetes is the foremost cause of CKD.

What a waste of the precious time he could have had to do more than stop smoking, which he did (to his credit), the moment he was told it would help with the diabetes.  Would he be where he was then if his medical practitioners had been aware of National Kidney Month or World Kidney Day, especially since this man was high risk due to his age and diabetes?  I fervently believe so.

I have a close friend who was involved in the local senior center where she lives.  She said she didn’t know anyone else but me who had this disease.  Since 1 out of every 7 people does nationally (That’s 15% of the adult population) and being over 60 places you in a high risk group, I wonder how many of her friends were included in the 96% of those in the early stage of CKD who don’t know they have CKD or don’t even know they need to be tested.  I’d have rather been mistaken here, but I’m afraid I wasn’t. National Kidney Month or World Kidney Day could have helped them become aware.

For those of you who have forgotten (Easily read explanations of what results of the different items on your tests mean are in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease.), all it takes is a blood test and a urine test to detect CKD.  I have routine blood tests every three months to monitor a medication I’m taking.  It was in this test, a test I took anyway, that my family physician uncovered Chronic Kidney Disease as a problem.

There is so much free education about CKD online. Maybe you can start with the blogroll on the right side of the blog or hit “Apps” on the Topics Dropdown. None of us needs to hear another sorrowful, “If only I had known!”

Until next week,

Keep living your life!

National Kidney Month, 2019

Anyone remember LOL? It’s older internet shorthand for Laughing Out Loud. That’s what I’m doing right now. Why? Because, after all these years of blogging, I’ve just realized that I compose my opening paragraph as I’m waking up. Still in bed, mind you. Still half asleep. Isn’t the brain wonderful?

This is my half asleep composition for this morning: March is National Kidney Month. That’s not to be confused with March 14th, which is World Kidney Day. So, today, we address the nation. Next week, the world.

As usual, let’s start at the beginning. What is National Kidney Month? Personalized Cause at https://www.personalizedcause.com/health-awareness-cause-calendar/national-kidney-month has a succinct explanation for us. By the way, while I’m not endorsing them since the site is new to me, I should let you know they sell the green ribbons for National Kidney Month that you’ll probably be seeing hither and yon all month.

“National Kidney Month, observed in March and sponsored by the National Kidney Foundation, is a time to increase awareness of kidney disease, promote the need for a cure, and spur advocacy on behalf of those suffeing (sic) with the emotional, financial and physical burden of kidney disease. The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease for hundreds of thousands of healthcare professionals, millions of patients and their families, and tens of millions of Americans at risk.” That, of course, prompted me to go directly to the National Kidney Foundation’s information about National Kidney Month at https://www.kidney.org/news/monthly/Focus_KidneyMonth.

Focus on the Kidneys During National Kidney Month in March

March is National Kidney Month and the NKF is urging all Americans to give their kidneys a second thought and a well-deserved checkup. Kidneys filter 200 liters of blood a day, help regulate blood pressure and direct red blood cell production. But they are also prone to disease; 1 in 3 Americans is at risk for kidney disease due to diabetes, high blood pressure or a family history of kidney failure. There are more than 30 million Americans who already have kidney disease, and most don’t know it because there are often no symptoms until the disease has progressed. During National Kidney Month in March, and in honor of World Kidney Day on March 14, the NKF offers the following health activities to promote awareness of kidneys, risk factors and kidney disease:

  • Free Screenings: On World Kidney Day and throughout the Month of March, NKF is offering free screenings to those most at risk for kidney disease – anyone with diabetes, high blood pressure or a family history of kidney failure. Locations and information can be found on the calendar on our website.
  • ‘Are You at Risk’ Kidney Quiz: Early detection can make a difference in preventing kidney disease so it’s important to know if you’re at risk. Take the online kidney quiz!
  • Live Twitter Chat with Dr. Joseph Vassalotti: The National Kidney Foundation’s Chief Medical Officer, Dr. Joseph Vassalotti, will be hosting an interactive kidney Q&A on World Kidney Day, Thursday, March 14, from 12-2 pm ET. Ask your questions at www.twitter.com/nkf using the hash-tag #WorldKidneyDayNKF.”

Wow, so much going on. This is also the month of kidney walks, like the one my daughter Nima participated in on the East Coast in my honor, or the one for which I organized a team several years ago. Actually, it’s the month specifically for anything and everything that will raise awareness of kidney disease. I’ve mentioned that I contributed a chapter to the book 1in9, which is about kidney disease. You’re right. The book launch is this month, March 6th to be specific.

The American Kidney Fund at http://www.kidneyfund.org/take-the-pledge/ is also taking part in National Kidney Month. They have a form to fill out to take a pledge to fight kidney disease.  I signed up; you can, too, if you’d like to. I’m not comfortable with the word “fight,” but I’m not going to let that stop me from spreading awareness of the disease. I wanted to share this quote from the AKF with you, both as a CKD awareness advocate and a woman:

“‘Kidney disease is a silent killer that disproportionately affects women who are often the primary caregivers for loved ones with the disease, are more likely to become living donors but less likely to receive a transplant, and are at higher risk for CKD,’ said LaVarne A. Burton, president and chief executive officer of AKF. ‘Because women with kidney disease may also face other health issues, including infertility, pregnancy complications, bone disease and depression, AKF is using Kidney Month to let women know we are here to support them and to provide resources that will answer their questions and concerns.’”

The Renal Support Network at https://www.rsnhope.org/ is working even more emphatically to spread kidney disease awareness this month, too:

“March is National Kidney Month. This is a special time set aside to raise awareness about kidney health and activities. RSN invites members of the kidney community, our friends and our families to join in the conversation.”

This on top of their usual. For those that are not familiar with this group, the following statement is from their website.

“Since 1993 RSN has created and continues to produce a vast collection of information about kidney disease. Feel free to share our National Kidney Month page, a favorite story, KidneyTalk™ show or awareness image on social media using the hashtag #KidneyMonth and be sure to tag us @RSNhope.”

DaVita Kidney Care at https://www.davita.com/education/resources offers many resources (as the website’s title assures us) to help understand both CKD and dialysis. Some of their offerings are:

If you click through on the link offered above, each item will open on a new page.

As for me, I’ll blog my brains out until more and more people are aware of kidney disease. Same goes for the Instagram, Facebook,Twitter, Pinterest, and LinkedIn accounts. It’s all about kidney disease.

Until next week,

Keep living your life!

Pancreas + Kidneys = ?

31 years ago, my father died of pancreatic cancer. For some reason, I remember him asking me what electrolytes were as soon as he was diagnosed. I didn’t know. I do now, but I don’t know if there’s a connection between the pancreas and the kidneys. Of course, I mean other than the fact that they are all organs in your body.

Oh, sorry, I didn’t give you the definition. This is from Healthline at https://www.healthline.com/nutrition/electrolytes  :

“’Electrolyte’ is the umbrella term for particles that carry a positive or negative electric charge ….

In nutrition, the term refers to essential minerals found in your blood, sweat and urine.

When these minerals dissolve in a fluid, they form electrolytes — positive or negative ions used in metabolic processes.

Electrolytes found in your body include:

  • Sodium
  • Potassium
  • Chloride
  • Calcium
  • Magnesium
  • Phosphate
  • Bicarbonate

These electrolytes are required for various bodily processes, including proper nerve and muscle function, maintaining acid-base balance and keeping you hydrated.”

Ummm, you have Chronic Kidney Disease. These are the electrolytes you need to keep an eye on, especially sodium, potassium, and phosphate. But why did Dad ask me about them?

I plunged right in to find the answer and immediately found a journal article… on a pay site. Not being one to pay for what can be found for free (and is 30 years old, by the way), I decided to look for as much information on the pancreas as I could find and see what we could figure out together.

Let’s start at the beginning. According to the Sol Goldman Pancreatic Cancer Research Center of Johns Hopkins Medicine – Pathology at http://pathology.jhu.edu/pc/basicoverview1.php?area=ba:

“What is the pancreas?

The pancreas is a long flattened gland located deep in the belly (abdomen). Because the pancreas isn’t seen or felt in our day to day lives, most people don’t know as much about the pancreas as they do about other parts of their bodies. The pancreas is, however, a vital part of the digestive system and a critical controller of blood sugar levels.

Where is the pancreas?

The pancreas is located deep in the abdomen. Part of the pancreas is sandwiched between the stomach and the spine. The other part is nestled in the curve of the duodenum (first part of the small intestine). To visualize the position of the pancreas, try this: touch your right thumb and right ‘pinkie’ fingers together, keeping the other three fingers together and straight. Then, place your hand in the center of your belly just below your lower ribs with your fingers pointing to your left. Your hand will be the approximate shape and at the approximate level of your pancreas.”

I tried that. It’s not as easy as it sounds.

So now we sort of know what and where it is, but what does it do? No problem, Columbia University Irving Medical Center has just the info we need at http://columbiasurgery.org/pancreas/pancreas-and-its-functions:

“Exocrine Function:

The pancreas contains exocrine glands that produce enzymes important to digestion. These enzymes include trypsin and chymotrypsin to digest proteins; amylase for the digestion of carbohydrates; and lipase to break down fats. When food enters the stomach, these pancreatic juices are released into a system of ducts that culminate in the main pancreatic duct. The pancreatic duct joins the common bile duct to form the ampulla of Vater which is located at the first portion of the small intestine, called the duodenum. The common bile duct originates in the liver and the gallbladder and produces another important digestive juice called bile. The pancreatic juices and bile that are released into the duodenum, help the body to digest fats, carbohydrates, and proteins.

Endocrine Function:

The endocrine component of the pancreas consists of islet cells (islets of Langerhans) that create and release important hormones directly into the bloodstream. Two of the main pancreatic hormones are insulin, which acts to lower blood sugar, and glucagon, which acts to raise blood sugar. Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys.”

The kidneys? Now it’s starting to make sense. We need whatever specific electrolyte balance our lab work tells us we need to keep our kidneys working in good stead and we need a well-functioning pancreas to regulate our blood sugars. Hmmm, diabetes is one of the two leading causes of CKD. It seems the pancreas controls diabetes since it creates insulin.

What could happen if the pancreas wasn’t doing its job, I wondered.  This is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/pancreatitis/symptoms-causes/syc-20360227,

“Pancreatitis [Me here: that’s an inflammation of the pancreas] can cause serious complications, including:

  • Pseudocyst. Acute pancreatitis can cause fluid and debris to collect in cystlike pockets in your pancreas. A large pseudocyst that ruptures can cause complications such as internal bleeding and infection.
  • Infection. Acute pancreatitis can make your pancreas vulnerable to bacteria and infection. Pancreatic infections are serious and require intensive treatment, such as surgery to remove the infected tissue.
  • Kidney failure. Acute pancreatitis may cause kidney failure, which can be treated with dialysis if the kidney failure is severe and persistent.
  • Breathing problems. Acute pancreatitis can cause chemical changes in your body that affect your lung function, causing the level of oxygen in your blood to fall to dangerously low levels.
  • Diabetes. Damage to insulin-producing cells in your pancreas from chronic pancreatitis can lead to diabetes, a disease that affects the way your body uses blood sugar.
  • Malnutrition. Both acute and chronic pancreatitis can cause your pancreas to produce fewer of the enzymes that are needed to break down and process nutrients from the food you eat. This can lead to malnutrition, diarrhea and weight loss, even though you may be eating the same foods or the same amount of food.
  • Pancreatic cancer. Long-standing inflammation in your pancreas caused by chronic pancreatitis is a risk factor for developing pancreatic cancer.

Did you catch kidney failure and diabetes? I believe we now know how the kidneys and pancreas are related to each other. Ah, if only I’d known how to research 31 years ago….

Until next week,

Keep living your life!

Kidney Anxiety

I clearly remember writing about how depression, grief, and stress affect your kidneys, but not about anxiety. As Bear’s pain worsens, there’s a lot of that in my house recently. I don’t understand why it’s taking so long for his doctors to decide upon a treatment plan for him, but while they do I am one anxious person.

I went directly to my old friend, the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961 for a set of anxiety symptoms:

“Common anxiety signs and symptoms include:

  • Feeling nervous, restless or tense
  • Having a sense of impending danger, panic or doom
  • Having an increased heart rate
  • Breathing rapidly (hyperventilation)
  • Sweating
  • Trembling
  • Feeling weak or tired
  • Trouble concentrating or thinking about anything other than the present worry
  • Having trouble sleeping
  • Experiencing gastrointestinal (GI) problems
  • Having difficulty controlling worry
  • Having the urge to avoid things that trigger anxiety”

While I don’t have all these symptoms, there are at least four or five of them I can identify with.

Wait a minute. Maybe I’m barking up the wrong tree. Is my worry about Bear’s pain really causing anxiety? I popped over to Medical News Today at https://www.medicalnewstoday.com/articles/323456.php for some help in figuring out just what it is that causes anxiety.

  • Environmental factors: Elements in the environment around an individual can increase anxiety. Stress from a personal relationship, job, school, or financial predicament can contribute greatly to anxiety disorders. Even low oxygen levels in high-altitude areas can add to anxiety symptoms.
  • Genetics: People who have family members with an anxiety disorder are more likely to have one themselves.
  • Medical factors: Other medical conditions can lead to an anxiety disorder, such as the side effects of medication, symptoms of a disease, or stress from a serious underlying medical condition that may not directly trigger the changes seen in anxiety disorder but might be causing significant lifestyle adjustments, pain, or restricted movement.
  • Brain chemistry: Stressful or traumatic experiences and genetic factors can alter brain structure and function to react more vigorously to triggers that would not previously have caused anxiety. Psychologists and neurologists define many anxiety and mood disorders as disruptions to hormones and electrical signals in the brain.
  • Use of or withdrawal from an illicit substance: The stress of day-to-day living combined with any of the above might serve as key contributors to an anxiety disorder.

There are items on this list which I hadn’t considered before. Years ago, when I was teaching in an old vocational high school, a student holding one of those long, heavy, solid oak window poles to open very high windows quickly spun around to answer a question and accidentally hit me in the head with the pole. That was certainly traumatic and also one of the few times I’ve been hospitalized.

We’ve pretty much figured out that there is an undiagnosed history of anxiety in the family. I’m referring to people from past generations who faced pogroms, the Depression, and even having to give up babies for adoption since that’s what was done with babies from unwed mothers in that generation. Could these folks have had anxiety disorders rather than environmental anxiety? Of course, we’ll never really know since they are long gone from this earth, but it is a thought.

Lightning Bolt!!! I remember visiting my buddy and her mother in San Miguel de Allende in Mexico not long after my own mother died and being anxious. I attributed it to still being in mourning for my mother. San Miguel de Allende has an elevation of 7,000 feet. Was that one of those “low oxygen levels in high-altitude area?” I didn’t know, but Laura Anderson author of the Gunnison Country Times’ article on Acli-Mate at https://acli-mate.com/living-at-altitude-the-pros-and-cons-of-a-high-altitude-lifestyle/ did:

“Low landers generally aren’t affected by altitude until they reach 4,500 to 5,000 feet. But after that, the affects (sic) of altitude are compounded about every 1,000 feet — so the affects (sic) of going from 6,000 feet to 7000 feet can feel the same as jumping from sea level to 4,500 feet.”

What in heaven’s name is this doing to my kidneys, I wondered. I was surprised to find an answer… in reverse. Rather than anxiety causing a kidney problem, it seems that fear of kidney disease can cause anxiety, or at least that’s what Calm Clinic at https://www.calmclinic.com/anxiety/kidney-problems claims. Be aware that they are a business and will try to sell to you if you go to their site.

  • Extra Urination Anxiety can cause more frequent urination. When you experience anxiety, the part of your brain that controls the withholding urination slows down because anxiety requires resources to be sent to other parts of your brain. This can lead to concerns over your renal health, although nothing is wrong.
  • Lower Back Pain Lower back pain is also very common with anxiety. Lower back pain comes from severe stress and tension, and yet it’s associated with some conditions that affect the kidneys as well which can have many people worried about their kidney health.
  • Life Experiences Anyone that suffers from anxiety and has had a friend or family member diagnosed with a terrible kidney condition is at risk for developing anxiety over the idea of poor kidneys. Anxiety can turn life experiences into very real concerns, and so kidney health concerns are one of the issues that can come up when you see it in others.”
  • Urine Color Urine color is another issue that can cause anxiety. Many people check their urine color for diseases habitually, and every once in a while the color of a person’s urine may be very different than what they expect. This can create concerns that the urine color changes are due to kidney problems.”

What I find interesting is that kidney disease can cause frequent urination, too. Kidney disease may also cause lower back pain. If you know any CKD patients, you know we’re always checking the color of our urine to make certain we’re well enough hydrated.

So it seems your fear of kidney disease may cause a symptom of kidney disease… and/or possibly diabetes. All I have to say to that is make sure you take the simple urine and blood test to determine if you do really have Chronic Kidney Disease or diabetes.

Until next week,

Keep living your life!

A Little Bit of This, A Little Bit of That

A long time reader mentioned she had a kind of kidney disease I wasn’t familiar with, so I decided to find out what I could about it. Are you aware of Uromodulin Kidney Disease?

This is what the U.S. National Library of Medicine at https://ghr.nlm.nih.gov/condition/uromodulin-associated-kidney-disease had to say:

“Uromodulin-associated kidney disease is an inherited condition that affects the kidneys. The signs and symptoms of this condition vary, even among members of the same family.

Many individuals with uromodulin-associated kidney disease develop high blood levels of a waste product called uric acid. Normally, the kidneys remove uric acid from the blood and transfer it to urine. In this condition, the kidneys are unable to remove uric acid from the blood effectively. A buildup of uric acid can cause gout, which is a form of arthritis resulting from uric acid crystals in the joints. The signs and symptoms of gout may appear as early as a person’s teens in uromodulin-associated kidney disease.

Uromodulin-associated kidney disease causes slowly progressive kidney disease, with the signs and symptoms usually beginning during the teenage years. The kidneys become less able to filter fluids and waste products from the body as this condition progresses, resulting in kidney failure. Individuals with uromodulin-associated kidney disease typically require either dialysis to remove wastes from the blood or a kidney transplant between the ages of 30 and 70. Occasionally, affected individuals are found to have small kidneys or kidney cysts (medullary cysts).”

Since this is inherited, I suspect the only way to prevent it is gene editing. I researched gene editing a bit but discovered there is quite a bit of controversy as to the legal and ethical aspects of this procedure right now. However, this doesn’t mean it isn’t possible.

The only other information I could find was far too technical for this lay person to understand, much less explain. Readers, do you have more information?

Something else that was new to me this week: pitaya or dragon fruit. I always buy myself a birthday present and this was mine for this year. By the way, thank you to all the readers who took the time to wish me well on my 72nd yesterday. Back to pitaya.

According to Healthline (Thank you again for the two awards.) at https://www.healthline.com/nutrition/dragon-fruit#what-it-is, pitaya is:

“Dragon fruit is a tropical fruit native to Mexico and Central America. Its taste is like a combination of a kiwi and a pear…. Dragon fruit is a low-calorie fruit that is high in fiber and provides a good amount of several vitamins and minerals…. Dragon fruit contains several antioxidants that protect your cells from damage. These include betalains, hydroxycinnamates, and flavonoids…. Animal studies suggest that dragon fruit may improve insulin resistance, liver fat, and heart health. However, the results of human studies are inconsistent…. To date, there have been two reported cases of a severe allergic reaction to dragon fruit.”

I like that it contains less sugar and calories than other tropical fruits, but I didn’t find the taste appealing. It was bland with just a hint of a woody aftertaste. Was it too ripe? Not ripe enough? Surprisingly, my Utah raised son-in-law loves it and jumped at the chance to finish mine.

I ran into what might have been more new information this past week when the P.A. taking my husband’s blood pressure used a wrist monitor on his right wrist. I was always told an arm cuff monitor was better because the pressure was only taken through one bone, whereas there are two in the wrist. I was also told that the left arm was best because it was closer to the heart. This advice was from my PCP’s nurse and that of my nephrologist. However, this P.A. insisted the wrist monitor measures atomic movement of the blood so it didn’t matter whether a wrist or arm cuff were used, nor which arm was used. It didn’t sound right to me.

This is from SlowItDownCKD 2014 and may be helpful here:

“Well, what about the different kinds of blood pressure monitors? I use a wrist monitor which my PCP is simply not thrilled with.  Her feeling is that I’m taking my pressure through two bones, the radius and the ulna, as opposed to only one bone, the humerus, with an arm device. There’s also the finger monitor, but that could be a problem if you have thin or cold fingers.

There are manual and battery operated versions of these monitors.  If you use an arm monitor, be aware that larger cuffs are available if needed. The one thing most blood pressure sites agree upon is that it’s not a good idea to rely on drugstore monitors for your readings.”

I have been researching for over two hours. I cannot find anything about atomic movement within the blood being measured by a blood pressure monitor of any kind. I’ve been to professional pages, checked studies, and even looked at advertisements. So, unless you have other information, I do believe I’ve been had. I just can’t wait to meet this young man at the follow up appointment in two weeks when I’ll ask him for resources and the monitor manufacturers’ information.

On another note, I’ve written about KDIGO during the last two years. This is from SlowItDownCKD 2017 and was repeated in the Sept. 17th blog in 2018.

“This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states:

KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.’”

So why mention it again, you ask? Well, you know how I’m always saying I’m not a doctor and neither are you, but doctors need to know what we, as kidney patients, need to say? KDIGO is now inviting patients – including those with CKD – to join their patient network. What better way to be heard as a kidney patient? I joined and I hope you will, too. The link to join is:

https://sydneypublichealth.au1.qualtrics.com/jfe/form/SV_72LdurS2QicQFKd.

This is the announcement the Dr. Joel Topf (on Twitter as @kidney_boy) brought to my attention:

Until next week,

Keep living your life!

I’ll be Glowing!

Not really, but that was my first thought when a nuclear medicine (NM) test was ordered for me. It required radioactive material to be injected into my veins. The test is called NM Hepatobiliary Scan with Pharmacologic Intervention.

Let’s get a definition of hepatobiliary before we do anything else. Thank you MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=19515 for this one:

“Hepatobiliary: Having to do with the liver plus the gallbladder, bile ducts, or bile. For example, MRI (magnetic resonance imaging) can be applied to the hepatobiliary system. Hepatobiliary makes sense since “hepato-” refers to the liver and “-biliary” refers to the gallbladder, bile ducts, or bile.”

That’s my kind of definition. Clear and easy for those of us who are not doctors to understand. It makes sense, too, since we were exploring what I called discomfort and my PCP called pain just under the lowest rib on my right side… very close to the gall bladder. The more than occasional nausea helped her to decide this test was necessary.

According to the test report, this is how it works:

“TECHNIQUE:

Frontal standing images of the abdomen and pelvis were obtained immediately and 30 minutes following the intravenous administration of Tc99m IDA. Pharmacologic intervention with CCK (or equivalent) and/or morphine with additional dynamic imaging was also performed.”

I didn’t know what Tc99mIDA or CCK was, so I’m guessing you don’t either.  Wikipedia at

https://en.wikipedia.org/wiki/Technetium_(99mTc)_mebrofenin  tells us,

“Technetium (99mTc) mebrofenin is a diagnostic radiopharmaceutical used for imaging of the liver and the gallbladder.”

Hmmm, we could have figured that out from the way the term is used in the context of the technique.

Let’s try CCK. This is also from Wikipedia but this time at https://en.wikipedia.org/wiki/Cholecystokinin.

“Cholecystokinin (CCK or CCK-PZ; from Greek chole, “bile”; cysto, “sac”; kinin, “move”; hence, move the bile-sac (gallbladder)) is a peptide hormone of the gastrointestinal system responsible for stimulating the digestion of fat and protein. Cholecystokinin, officially called pancreozymin, is synthesized and secreted by enteroendocrine cells in the duodenum, the first segment of the small intestine.” 

Well, that’s fairly explanatory, but keep in mind that Wikipedia entries can be edited by anyone.

I know, now you want to know the results. Back to the test report:

“HIDA scan:

Gallbladder clearly visualized. Gallbladder ejection fraction calculated at 37% at 30 minutes. Greater than 35% is normal.

Study Result Impression:

Gallbladder clearly visualized. Borderline abnormal gallbladder response to cholecystokinin challenge.”

Here’s where I got lost. If my gall bladder ejection fraction is normal, how can I have a borderline abnormal gall bladder response to cholecystokinin challenge? Yep, it’s time to make an appointment with my family doctor since she ordered these tests and, being who she is, can probably explain that in terms I can understand.  More on that after next week’s liver MRI and an appointment with her to discuss the findings of both tests.

While this is all interesting, what does it have to do with the kidneys? I went back to SlowItDownCKD 2013 to find out what I’d written about that after my New York daughter’s gall bladder was removed.

“After speaking with my daughter, I still wondered what gallstones have to do with Chronic Kidney Disease.  Searching the web only garnered this one article from January, 2009 … and the study only covered Taiwan. Of course, I found it at the National Institutes of Health at https://www.ncbi.nlm.nih.gov/pubmed/19352299.

‘The prevalence of gallbladder stones in patients with Chronic Kidney Disease is significantly higher than in those without Chronic Kidney Disease. Our findings suggest that increasing age, Chronic Kidney Disease, body mass index > or =27 kg/m {greater than 59 pounds}, metabolic syndrome, and cirrhosis are the related factors for gallbladder stone formation.’

Now think about it another way: you already have a compromised immune system because you have CKD.  Gallstones can cause infection of the gallbladder. As in Nima’s experience, infection causes white blood cell elevation. So you know you have an infection, you might even realize it could be in the bile ducts, too.  But did you check to see if there’s infection in other areas of your body? That would mean you can read your own test results or have the kind of relationship with your doctors – especially your nephrologist – to freely ask questions.

As for what this organ does, this is what MedlinePlus at https://vsearch.nlm.nih.gov/vivisimo/cgi-bin/query-meta?v%3Aproject=medlineplus&v%3Asources=medlineplus-bundle&query=gall+bladder&_ga=2.56082859.126205281.1548540376-1108406265.1544652518 had to say.

‘Your gallbladder is a pear-shaped organ under your liver. It stores bile, a fluid made by your liver to digest fat. As your stomach and intestines digest food, your gallbladder releases bile through a tube called the common bile duct. The duct connects your gallbladder and liver to your small intestine.’

Keep in mind that your liver, the largest organ in your body {The skin is actually the largest organ, but it’s external.} is the other organ that filters your blood.  Since your CKD has been diagnosed, your liver is already working harder. Add losing your gallbladder and you’ve got one very hard working – possibly overworked – liver.”

Needless to say, while I was taking this in stride, especially since my kidney function is the best it’s been in the over a decade since I’ve been diagnosed with CKD, I am now eager to have the liver MRI and get back to my primary care doctor (PCP) so she can explain what a lay person can’t understand from reading the results-  even with further researching.

A few announcements, if you please:

Our friends at @antidote_me are hosting the first of their new free monthly patient focused webinars. This one is about how medical research really works and is this Wednesday, January 30th. It’s a 15 minute webinar.  Register now: https://hubs.ly/H0gc_KV0.

Also, I write the blogs from a U.S. angle since that’s where I live. There is a new Facebook CKD support group which is from the British angle. It’s Chronic Kidney Disease Support Group for UK! Another is CKD Support UK. These are only two of several from across the sea. If you’d like to find the others, go to Facebook and in the search bar on top, enter CKD Support in UK. That little word “in” is what makes it searchable.

Until next week,

Keep living your life!

Double Whammy

Just as the flu was walking out the door, sinusitis walked in. No fair! Although, I must be feeling better because I’m starting to open all the doors and windows again.

I live in Arizona. We don’t have an actual winter, but we do have a flu season with all its accompanying ailments. Having a compromised immune system is not exactly a first choice, but I have Chronic Kidney Disease.

I know I need to slow down with this explanation. Good thinking. First off, what is the immune system? I went to NCBI, The National Center for Biotechnology Information at https://www.ncbi.nlm.nih.gov/books/NBK279364/ for an answer.

“The immune system (from the Latin word immunis, meaning: “free” or “untouched”) protects the body like a guardian from harmful influences from the environment and is essential for survival. It is made up of different organs, cells and proteins and aside from the nervous system, it is the most complex system that the human body has.

As long as our body’s system of defense is running smoothly, we do not notice the immune system. And yet, different groups of cells work together and form alliances against just about any pathogen (germ). But illness can occur if the performance of the immune system is compromised, if the pathogen is especially aggressive, or sometimes also if the body is confronted with a pathogen it has not come into contact before.”

Notice the word “compromised” in the last sentence. According to Dictionary.com at https://www.dictionary.com/browse/compromised, that means

“unable to function optimally, especially with regard to immune response, owing to underlying disease, harmful environmental exposure, or the side effects of a course of treatment.”

So when you have a compromised immune system, you are not receiving the full protection against germs that you could be receiving. Well, how does CKD affect the immune system?

My GFR (the numbers above the arc in the photo to the left and defined later in this blog) is usually between 49% and 59%. That means at any given time I’m missing quite a bit of the function normal kidneys would have. In other words, my kidneys are working more than twice as hard as those of someone without kidney disease. This is a fact that’s easy to forget now that I have the renal diet down pat … until I get sick… and it takes me longer to recuperate… or I slide right into another illness.

Let’s take a look at the jobs performed by the kidneys to see exactly why. This is what I wrote in SlowItDownCKD 2014:

“Your kidneys filter toxins and waste products from your blood.  They also regulate electrolyte levels and blood pressure and produce hormones, among their many jobs.”

Let’s say I eat some bad food. It would take me more than twice as long to recover and I could be more than twice as sick since my kidneys are compromised. Or maybe I actually took one of Bear’s medications instead of my own (which will never happen since they’re kept far, far from mine. This is just an example.) Same thing. I only have less than half the ability to remove a toxin from my body as someone with normal kidney function does. As for germs? You guessed it. My compromised immune system leaves me open to far more than I would be if I didn’t have CKD.

Now for sinusitius. I had that one covered in SlowItDownCKD 2013:

“The Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/acute-sinusitis/symptoms-causes/syc-20351671 has this to say about acute sinusitis:

‘Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.’

Before we get any more detailed here, a few reminders are in order {taken from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary}.

Acute – Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic – Medication used to treat infection.

Chronic – Long term, the opposite of acute.

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

Keeping it plain and simple, that just about covers my double whammy of sliding from the flu into sinusitis.

For those interested in KidneyX, this may be for you:

KidneyX: #RedesignDialysis Twitter Chat
The KidneyX: Redesign Dialysis prize challenge has a total prize purse of $2,625,000 and aims to accelerate the development and commercialization of next-generation dialysis products. Now through February 28, 2019, the KidneyX Redesign Dialysis competition will be accepting proposals for solutions or components of solutions that offer patients significant alternatives to dialysis as it is generally practiced today.
Innovators that are interested in applying for KidneyX: Redesign Dialysis are encouraged to participate in Twitter chat on January 24, 2019 from 1:00pm – 2:00pm EST.
Representatives from the U.S. Department of Health and Human Services and American Society of Nephrology will be available during the chat to answer your questions and provide more information about KidneyX, the Redesign Dialysis competition, and innovation in kidney care.. To participate and follow the chat, use the #RedesignDialysis hashtag.

For those of you who are caretakers for people with CKD, this may interest you:

Please join us on Wednesday, January 23 at 1 p.m. ET for an educational webinar titled: Taking Care of Yourself While Taking Care of Your Loved Ones – Coping Strategies for Kidney Patient Caregivers!
As a caregiver for a loved one with kidney disease, it is important to remember to take time for yourself. Hear from social worker Renee Bova-Collis, MSW, LCSW, and caregivers Brenda Vasser-Taylor and Ashley Martin … as they share coping strategies to help you take care of yourself so that you can support your loved ones.

 

Click here to Register!

 

After registering, you will receive a confirmation email with information on how to join the webinar. To call-in without connecting to a computer, use this #:

United States: +1 (562) 247-8422

You will be asked to enter the following Access Code: 399-056-972#

Audio PIN: Shown after joining the webinar

Until next week,

Keep living your life!