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!

Balloon sans Cake or Ice Cream

I am at Stage 3A, which is still pretty far from dialysis or End Stage Kidney Disease (ESRD) which is usually Stage 5. Chronic Kidney Disease (CKD) is staged by your Glomerular Filtration Rate (GFR). This graphic will make it clear.

I don’t know very much about dialysis. However, I have heard of a fistula. I went to MedlinePlus, which is subdivision of the U.S. National Library of Medicine which, in turn, is a subdivision of the National Institutes of Health at https://medlineplus.gov/ency/article/002365.htm for a formal definition of fistula.

“A fistula is an abnormal connection between two body parts, such as an organ or blood vessel and another structure. Fistulas are usually the result of an injury or surgery. Infection or inflammation can also cause a fistula to form.

Information

Fistulas may occur in many parts of the body. They can form between:

  • An artery and vein
  • Bile ducts and the surface of the skin (from gallbladder surgery)
  • The cervix and vagina
  • The neck and throat
  • The space inside the skull and nasal sinus
  • The bowel and vagina
  • The colon and surface of the body, causing feces to exit through an opening other than the anus
  • The stomach and surface of the skin
  • The uterus and peritoneal cavity (the space between the walls of the abdomen and internal organs)
  • An artery and vein in the lungs (results in blood not picking up enough oxygen in the lungs)
  • The navel and gut”

Now, look again at the first words in the list above: “an artery and vein.” That’s the way fistulas for dialysis are formed. But how?

“A vascular access is a hemodialysis patient’s lifeline, because it makes life-saving hemodialysis treatments possible. Hemodialysis is a treatment for kidney failure that uses a machine to send the patient’s blood through a filter, called a dialyzer, outside the body. The access is a surgically created vein used to remove and return blood during hemodialysis. The blood goes through a needle, a few ounces at a time. The blood then travels through a tube that takes it to the dialyzer. Inside the dialyzer, the blood flows through thin fibers that filter out wastes and extra fluid. The machine returns the filtered blood to the body through a different tube. A vascular access lets large amounts of blood flow continuously during hemodialysis treatments to filter as much blood as possible per treatment. About a pint of blood flows through the machine every minute. A vascular access should be in place weeks or months before the first hemodialysis treatment.”

Thank you to the University of California, San Francisco, Department of Surgery at https://surgery.ucsf.edu/conditions–procedures/vascular-access-for-hemodialysis.aspx for even more useful information than I’d sought.

But now we need to know what hemodialysis is. The National Kidney Foundation at https://www.kidney.org/atoz/content/hemodialysis was a fount of knowledge for us (as it always is):

“When is dialysis needed?

You need dialysis if your kidneys no longer remove enough wastes and fluid from your blood to keep you healthy. This usually happens when you have only 10 to 15 percent of your kidney function left. [Gail here: that’s stage 5 or ESRD.] You may have symptoms such as nausea, vomiting, swelling and fatigue. However, even if you don’t have these symptoms yet, you can still have a high level of wastes in your blood that may be toxic to your body. Your doctor is the best person to tell you when you should start dialysis.

How does hemodialysis work?

Hemodialysis is a procedure where a dialysis machine and a special filter called an artificial kidney, or a dialyzer, are used to clean your blood. To get your blood into the dialyzer, the doctor needs to make an access, or entrance, into your blood vessels. This is done with minor surgery, usually to your arm. ….

How does the dialyzer clean my blood?

The dialyzer, or filter, has two parts, one for your blood and one for a washing fluid called dialysate. A thin membrane separates these two parts. Blood cells, protein and other important things remain in your blood because they are too big to pass through the membrane. Smaller waste products in the blood, such as urea, creatinine, potassium and extra fluid pass through the membrane and are washed away.”

By the way, hemodialysis is not the only kind of dialysis.

Got it? So what’s this about balloon? By this point, you’ve realized it’s not the kind you see at birthday parties as you see cake and ice cream. Someone I know is having this procedure. While talking it over, we realized neither of us knew how it was done or, on some levels, why it was even done. I decided we could both learn about it if I wrote about ballooning.

Well, will you look at that? Ballooning is really angioplasty. The Encarta Dictionary defines angioplasty as,

“a surgical operation to clear a narrowed or blocked artery”

That makes sense since a fistula connects an artery and a vein.

Let’s find out why how it’s done. I found a good explanation from Azura Vascular Care at https://www.azuravascularcare.com/infodialysisaccess/angioplasty-can-help-with-dialysis-access-complications/.

“An angioplasty is a way to fix a blood vessel that has become narrow.

  • If you need an angioplasty, an inflatable balloon will be inserted through the catheter.
  • The balloon is inflated where the narrowing is.
  • You may feel some discomfort when the balloon is inflated.
  • The angioplasty usually takes about 1 hour.
  • One stitch may be placed at the insertion site.
  • The stitch can be taken out the following morning or at your next dialysis treatment.”

Apparently, your artery can be too narrow before you start dialysis. Notice, the person I was speaking with has a fistula, not a catheter. The procedure is the same, except that the balloon is inserted via the fistula.

Well, what about after the angioplasty? This is from the Texas Heart Institute at https://www.texasheart.org/heart-health/heart-information-center/topics/vascular-access-for-hemodialysis/:

“Patients should avoid heavy lifting. Any injury to your arm can cause bleeding. When you go to the doctor, do not let anyone take your blood pressure, start an IV, or take blood from the arm with the A-V fistula or graft.”

Now I know, and so does the person I was speaking with… and so do you.

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!

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!

Kidney Healthy Food Labels?

How many of you remember the KidneyX competition? Let me refresh your memories, just in case. This is from this year’s January 13th, blog:

“Redesign Dialysis Phase II

Building off the success of KidneyX’s inaugural prize competition, Redesign Dialysis Phase I, Phase II challenges participants to build and test prototype solutions, or components of solutions, that can replicate normal kidney functions or improve dialysis access. Up to 3 winners will each be awarded $500,000.

Submissions are due by 5:00 ET on January 31, 2020.

Who Can Participate?

You can submit a solution even if you did not submit anything in Phase I….

What is KidneyX Looking for in Redesign Dialysis, Phase II?

We are seeking prototype solutions that address any of these categories:

  • Blood Filtration (filtering blood to remove waste and excess fluid)
  • Electrolyte Homeostasis (maintaining appropriate levels of key minerals in the blood)
  • Volume Regulation (regulating the amount of and/or removing excess fluid).
  • Toxin Removal and Secretion (removing, limiting or preventing toxins in the bloodstream).
  • Filtrate Drainage and Connectivity (removing excess filtrate after processing; connectivity issues for filtration, processing, and exterior drainage)
  • Dialysis Access (vascular, peritoneal, blood circuit, or alternative (e.g., GI tract) access)

… design targets, as well as the categories themselves, were developed based on the Kidney Health Initiative’s Technology Roadmap for Innovative Approaches to Renal Replacement Therapy, which is an excellent resource to learn more about technical and scientific needs in this space.

Tests of the prototype’s function or performance should demonstrate rigor, reproducibility, and statistical analysis….

You can learn more at https://www.kidneyx.org/prizecompetitions/RedesignDialysisPhase.”

I was lucky enough to have one of the phase I winners contact me re a two question survey about his entry. That led to a few emails back and forth which resulted in Anthony’s guest blog today….

“My name is Anthony, and I was recently chosen as a winner in the KidneyX, ‘Patient Innovator Challenge’ competition. KidneyX is a recently formed partnership between the US Department of Health and Human Services (HHS) and the American Society of Nephrology (ASN).  According to their website, they were established ‘to accelerate innovation in the prevention, diagnosis, and treatment of kidney disease.’  The competition welcomed the public to submit ideas on how to improve therapeutic options and the quality of life for those living with kidney disease.

As a former employee of a dialysis company, I always thought that there was something more that could be done in terms of the prevention and treatment of people living with kidney disease. The lack of awareness and research around kidney disease was always a concern to me. Quite frankly I never stopped thinking about it, even after my departure from the industry.  Then one day, I came up with an idea that I believe will solve a lot of problems within the CKD community. My solution is ‘Kidney Healthy’ food labels.

Food labels are a major factor in dictating consumer food purchases today. With major food labels such as ‘gluten free’ and ‘organic’ leading the way, many consumers are now allowing food labels to dictate their purchasing decisions. Consumers are now demanding more transparency in the foods they eat, and food labels serve as a driving force for consumers to take control of their health.

The statistics on kidney disease are not very promising. According to the National Kidney Foundation, Chronic Kidney Disease, or CKD affects an estimated 37 million people in the United States, which equates to 15% of the population. 468,000 of those individuals are currently on dialysis (End Stage Renal Disease), a treatment that cost this country $89,000 per patient each year, which equates to a cost of almost $42 billion dollars a year. According to The Kidney Project, ESRD is increasing in the United States by 5% each year, so it’s only inevitable that this cost is going to continue to increase as the years go by. In addition, two million people suffer from ESRD worldwide; this number is increasing by 5-7% each year.

I believe ‘Kidney Healthy’ food labels could serve as a universal solution to slow down the progression, lower the cost, create better patient outcomes, and ultimately bring more awareness to those living with (and without) Chronic Kidney Disease.

I decided to submit my idea to the KidneyX ‘Patient Innovator Challenge’ competition, and was so honored to be chosen as a winner.  Although I do understand that when it comes to kidney disease, there really isn’t a ‘one diet fits all,’ I still would love to live in a world where kidney patients can rely on a universal food label (such as organic or gluten-free). Obviously a food certification process would have to be created to establish this label, or labels for that matter (CKD Stage 1, 2, 3, etc. label), but my goal is to have a more standardized approach to the kidney diet for patients by way of ‘Kidney Healthy’ food labels.

My next step is to get my idea in front of the CKD community. I am currently conducting an independent research project that I need your help with. I believe that creating Kidney Healthy Food labels (similar to organic and gluten-free) will assist in slowing down the progression of Chronic Kidney Disease, and preserve a better quality of life for both CKD and ESRD patients.

As a member of the CKD Community, Please take this 2 Question Survey to help. Your participation is greatly appreciated!

When you are finished, please forward this survey to the CKD community to assist in helping.

Here is the link to the survey:

https://www.surveymonkey.com/r/KidneyHealthyFoodLabels

 

In other news, those who were interested in Flavis’s low protein, low sodium, low phosphorous products may find their Ditali appealing. We enjoyed the delicate taste of this pasta. By the way, their chocolate chip cookies were pretty good, too.

Keep yourselves as safe as you can during the lock down. Lock down is better than die any day and we are especially open to the virus with our compromised immune systems. Keep that in mind when you start to get restless.

Until next week,

Keep living your life!

Allow Me to Introduce You…

We all know I’m not the only one raising awareness about Chronic Kidney Disease. I’ve posted guest blogs from other writers, those who bring our plight to the attention of the government, manufacturers of products that may help us, and patients and/or donors themselves. But I realize I’m ‘old school.’ There are those who are more comfortable with other forms of social media, such as broadcasting shows. Hopefully, you haven’t seen the two YouTubes I created years ago. For an actor, they are awful. Others are doing a much better job of broadcasting than I can.

One such person is Steve L. Belcher. After I realized I’ve been seeing his name again and again on Facebook, I decided to ask him to guest blog. I certainly learned a lot from his blog and I hope you do, too. This is not a competition among Chronic Kidney Disease awareness advocates, but an informal coalition. We all want you to know as much as you can about this disease we share. Steve’s blog explains the background for all the shows he broadcasts. Kudos, my friend, kudos.

Urban Kidney Alliance, Inc. was founded and created September 2014 as a 501 (c) (3) grassroots nonprofit [Gail here. This has to do with restrictions on lobbying rights.] by Steve L. Belcher, RN, MSN, MS – a former dialysis nurse clinician – as a result of witnessing the lack of resources for kidney patients dialyzing in renal treatment facilities located in urban communities. Many patients undergoing kidney dialysis from urban communities are forced to make hard decisions between purchasing lifesaving medications or food to feed themselves or family members. Urban Kidney Alliance, Inc. initially assisted patients with financial needs for medications, transportation to and from treatment, utilities, and communication devices. Due to the enormous cost of assisting patients and lack of donations, Urban Kidney Alliance could no longer operate under this operational concept.

At this juncture Urban Kidney Alliance, Inc. decided to refocus its mission towards kidney disease education, collaboration, and advocacy. Urban Kidney Alliance, Inc. believes refocusing their mission will have a better impact on reaching communities and individuals at-risk for chronic kidney disease. Urban Kidney Alliance, Inc.’s goal is to reach three million people with their message of kidney disease awareness.

Before the inception of Urban Health Outreach, there was Urban Renal Talk with Tamika & Steve. On October, 2017, Tamika Ganues joined Urban Kidney Alliance, Inc. as Vice President of Operations. During our early beginnings, we began broadcasting Urban Renal Talk with Tamika and Steve from our cellphones to our Facebook Page. The Urban Renal Talk with Tamika and Steve broadcast was created to interview kidney patients and professionals making a difference in the chronic kidney disease community. Since the beginning Urban Renal Talk with Tamika and Steve has come a long way with over four hundred broadcast shows to date. Our shows consist of digital broadcasting, which is the distribution of audio or video content to a dispersed audience via any electronic mass communication medium.

As a result of the overwhelming positive response to Urban Renal Talk with Tamika & Steve, we decided to create a second show directed towards the transplant community called Sunday Morning Transplant Coffee. However, this wasn’t always the case. Our viewership began slowly. Many people haven’t heard of our show and the work we were doing to raise kidney disease awareness and education. The majority of our guests in the beginning were patients sharing their struggles and triumphs with kidney disease. As we began to be consistent with our shows, we were able to schedule and confirm professional guests on the show. Sunday Morning Transplant Coffee Talk was broadcast every Sunday from 11:00 am – 12:00 pm EDT and interviewed guests who were either transplant recipients, transplant donors, or had received a transplant which was later rejected.

January 2019 was the launch and creation of the Urban Health Outreach Media Network on Facebook, a subsidiary of Urban Kidney Alliance, Inc. Urban Health Outreach Media was created to be an online kidney disease education and awareness media broadcasting company to reach more people at-risk and affected by kidney disease globally. Currently, Urban Health Outreach Media broadcasts five shows during the week. The shows are:

The Lisa Baxter Show Sunday 8:00 PM – 8:30 PM

World Kidney News Sunday 9:00 PM – 10:00 PM

Smashing Kidney Disease Tuesday 8:00 PM – 9:00 PM

Warriors Quest Wednesday 8:30 PM – 9:30 PM

Urban Renal Talk with Tamika & Steve Thursday 9:00 PM – 10:00 PM

Kidney Stories 2 first and last Friday of each month from 8:00 PM -9:00 PM EST.

Each show has its own unique style and approach to addressing kidney disease. For example, Warriors Quest gives kidney patients seeking a living kidney donor transplant the opportunity to share their story and transplant hospital information in hopes of finding a donor.

We felt there was a need to create these shows to address the many aspects of kidney disease and the comorbidities associated with it such as diabetes and hypertension. Social media has become a focal point for millions of people to interact and socialize with each other across the country. Urban Kidney Alliance, Inc. wanted to draw on this population with the multiple shows. In addition, the multiple kidney disease groups on Facebook give us another way to disseminate our patient education to patients who undergo in center hemodialysis, home hemodialysis, peritoneal dialysis, and transplantation. Since the start of Urban Health Outreach Media, the shows have lived up to our expectations, yet we still have a long way to go. We measure the success of our shows by the increase in viewership over time.

The author Steve L. Belcher, RN, MSN, MS, DN-CM [Me again: This means Delegating Nurse/Case Manager.], has been affiliated with the kidney dialysis industry for over thirty-three years. He began his career in 1985 as a Patient Care Technician, and – in 1996 – started his career as a Dialysis Staff Nurse. In addition, Steve has worked at many dialysis clinics throughout the United States as a Dialysis Travel Nurse. Today, Steve L. Belcher, RN is the Executive Director of Urban Kidney Alliance, Inc. and resides in Washington, D.C.”

Steve, I salute you for all you do to bring CKD awareness to the rest of us. Thank you.

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!

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!

James’s Kidney Transplant Wasn’t Preemptive

Last week, the third week of National Kidney Month, Kevin Fowler told us his story of the journey to his preemptive kidney transplant. This week, the fourth of National Kidney Month, James will tell us of his journey to a non preemptive kidney transplant. In case you were wondering, James and I met at an AAKP meeting in Tampa several years ago and just never lost contact. But let’s allow Uncle Jim (as he prefers to be called) tell his story.

My name is James Myers. I live in Hammond, IN. I am an ESRD & PKD patient. I was lucky enough to have a transplant on April 27th, 2016. I write to you today to tell you my story, as well as my experiences with polycystic kidney disease. At the age of 25, I went into the hospital with chest pain. From a simple x-ray, I was diagnosed with PKD.

I have lost five members of my family to PKD, including my dad. Because of my family’s history, I was immediately referred to Dr. Hellman, a nephrologist at Indiana University Health. He promptly put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic every six months and took my medicine. I did the best I could do to stay on the kidney diet. There is no cure for PKD, and at that time, there was very little they could do for me.

I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were colored by my impending death, or so I thought. It was a factor in a failed marriage, a legal career being cut short, and two professorships at two different colleges lost. I loved being with the kids.

Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012. I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a four year stretch on dialysis. My schedule was three days a week, four hours per session.

I was very, very angry when I first went on dialysis. After watching my dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My dad passed after a short five years on dialysis, and I felt I was on the same life path as he. My days were numbered. I observed that many of my clinic mates came to the center by ambulance, were brought in on a gurney, walker, or wheelchair. Many used a cane. Many were diabetic on top of ESRD, and had suffered amputations. Five people were 90 years old or more. One woman was autistic and had the mentality of a 10 year old.

One of my dearest friends, Maureen O’Brien, looked after me. She forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward two MBAs and was teaching other MBA candidates at the same time. Maureen had been dealing with kidney disease since the age of six. Every step along the way she had to argue and fight with healthcare officials. She had three transplants. Maureen provided encouragement and a bright, vivid smile. She provided a light on my path.

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

I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. I spoke frequently. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my dad & Maureen would be proud of me.

I know that many of you are not used to me writing this way. I feel it is my responsibility to lift spirits, so I rarely talk about personal issues anymore. It is my hope to inspire others to likewise advocate for our fellow Kidney Patients. My friend Gail asked me to write my story out. Gail has been very candid with me, so I felt as she advocates for us, I should be just as candid with her & all of you. The point of this Kidney Story is to raise hope and to thank Gail and all of you that advocate for Kidney Patients.

PKD affects approximately 600, 000 Americans and 12.5 million people worldwide. It is one of the most inherited diseases on the planet. Polycystic Kidney Disease is more common than Cystic Fibrosis, Sickle Cell Anemia, Muscular Dystrophy, Hemophilia, Downs Syndrome, and Hodgkins Disease combined. PKD is one of the four leading causes of Kidney Failure. It costs the federal government in excess of $2 Billion annually in Medicare and Medicaid costs for dialysis, transportation and related treatment. There is no cure.

Sincerely,

James Myers
2019 Advocate of the Year for the NKF
BOD and Ambassador for the AAKP
Ambassador for the Chronic Disease Coalition
Ambassador for the NKF of Indiana
Ambassador for the American Kidney Fund
Ambassador for the PKD Foundation
Ambassador for the DPC

Thank you, Uncle Jim, for your generous sharing and even more generous advocacy.

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!

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!

But I Wasn’t Done

Talk about chemo brain. The reader who asked the questions addressed in last week’s blog also wanted to know if Chronic Kidney Disease had any impact on the menstrual cycle… and I passed right over those questions as if she’d never asked. Whoa. This is a new way of being for me, so apologies dear reader for that pretty important oversight. Today, we correct the oversight. Tomorrow we banish chemo brain – or brain fog as CKD patients experience it. (Sigh. If only it took just one day.)

On October 1st, 2018, I explored the menstrual cycle’s effect on CKD and vice-versa issue:

“Back to the beginning for those who have just plain forgotten what the menses is and why women experience it. Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/menses for starting us off today. Menses is:

‘the periodic discharge from the vagina of blood and tissues from a non-pregnant uterus; the culmination of the menstrual cycle. Menstruation occurs every 28 days or so between puberty and menopause, except during pregnancy, and the flow lasts about 5 days, the times varying from woman to woman.’

I clearly remember the days of anxiously awaiting my period only to find I had miscalculated its start. Commence the washing-out-the-underwear-nightly-during-my-period era which lasted decades. It was messy, but apparently menstruation was necessary. Why, you ask.

Back to Wikipedia. By the way, when I was teaching research writing in college, I always found this a good source to start researching despite the fact that anyone can edit it. This is the explanation I was looking for. I found it at https://en.wikipedia.org/wiki/Menstrual_cycle.

‘The menstrual cycle is the regular natural change that occurs in the female reproductive system (specifically the uterus and ovaries) that makes pregnancy possible. The cycle is required for the production of oocytes [Me here: this means an immature egg] and for the preparation of the uterus for pregnancy….’

As someone who had always planned to be a mother, you can see why I felt this was a necessary – albeit messy – function of my body. I have a biological grandchild and another being planned (As of October 31, 2019, I have TWO terrific grandsons.). Thank you, menstruation.

But what if I had developed CKD when I was premenopausal? Would things have been different for me? DaVita at https://www.davita.com/education/kidney-disease/risk-factors/womens-health-risks-and-chronic-kidney-disease-ckd explains some of what I might have had to deal with.

‘When a woman has chronic kidney disease her periods tend to be irregular. Once she begins dialysis her periods may even stop altogether. As kidney function drops below 20 percent of normal, a woman is less likely to conceive because dialysis doesn’t perform all of the tasks of the kidneys. The body retains a higher level of waste products than it would with a normal kidney, which can prevent egg production and affect menstruation.

Erythropoietin treatments will cause about 50 percent of woman on dialysis to get their periods again. This is attributed to the improved hormone levels and the treatment of anemia. Therefore, erythropoietin treatments can increase a woman’s fertility, so birth control should be used if a woman is sexually active and does not want to become pregnant.’

Okay, but I’m not on dialysis and my GFR hovers in the 50-55% range. I see from the quote above that my periods might have become irregular. I also noted that a ‘higher level of waste products is being retained.’ (Why does that give me the creeps?)

Let’s go back to those waste products. Remember what they are? Shodor, a site for undergraduate students, at https://www.shodor.org/master/biomed/physio/dialysis/kidney.htm was helpful here:

‘The kidneys are the filtering devices of blood. The kidneys remove waste products from metabolism such as urea, uric acid, and creatinine by producing and secreting urine. Urine may also contain sulfate and phenol waste and excess sodium, potassium, and chloride ions. The kidneys help maintain homeostasis by regulating the concentration and volume of body fluids. For example, the amount of H+ and HCO3  secreted by the kidneys controls the body’s pH.’

Whoa! I wouldn’t want even more of these substances in my body. Not only would they make the CKD worse, but also its effects on my body. According to Medical News Today at https://www.medicalnewstoday.com/articles/172179.php, these effects include:

  • anemia
  • blood in urine
  • dark urine
  • decreased mental alertness (Gail here: as in brain fog.)
  • decreased urine output
  • edema – swollen feet, hands, and ankles (face if edema is severe)
  • fatigue (tiredness)
  • hypertension (high blood pressure)
  • insomnia
  • itchy skin, can become persistent
  • loss of appetite
  • male inability to get or maintain an erection (erectile dysfunction)
  • more frequent urination, especially at night
  • muscle cramps
  • muscle twitches
  • nausea
  • pain on the side or mid to lower back
  • panting (shortness of breath)
  • protein in urine
  • sudden change in bodyweight
  • unexplained headaches

Is there anything else I should know?

The Huffington Post at https://www.huffingtonpost.com/leslie-spry-md-facp/women-with-chronic-kidney_b_10163148.html let Dr. Leslie Spry, Spokesman for the National Kidney Foundation, answer this one and I will, too.

‘Women with CKD have been shown to commonly experience menstrual irregularities. This can include excessive bleeding, missed periods, and early onset of menopause. In studies of patients with CKD, women enter menopause from 3 to 5 years earlier than patients without CKD. Treatment can be very challenging. Studies of estrogen replacement therapy have shown an increased risk of heart disease and blood clotting disorders. Kidney transplantation will usually correct these abnormalities.’

Now I wonder if I’d had CKD even earlier than when I’d caught it on a lab report a decade ago. Excessive bleeding? Check. Early menopause? Check. Hmmm.

But wait. There’s some good news in here, too.

‘Thus, recurring changes of sex hormone levels, as brought about by the natural menstrual cycle, might be involved in periodic tissue remodeling not only in reproductive organs, but to a certain extent in the kidneys as well,’ she added.

Lechner [Me here: She’s the study author – Dr. Judith Lechner, of the Medical University of Innsbruck in Austria] hypothesizes that estrogen might help to replace damaged cells. During cycle phases of high estrogen exposure, kidney cells might be induced to grow, she explained, “while at time points of decreasing estrogen levels damaged or simply older cells might be discarded into the urine.’”

You can read more about this small study published in the Journal of the American Society of Nephrology in Medical Daily at https://www.medicaldaily.com/sex-differences-menstrual-cycle-kidney-failure-384251.

This blog is becoming a book by itself. All questions answered, dear reader?

Until next week,

Keep living your life!

Auld Lang Syne Already?

It’s the last few days of 2019 and this year has whizzed by. My dance with pancreatic cancer has been a trip I could have done without, but the birth of my grandson more than made up for it. Now I get to see him all the time and I only have one more regiment of chemotherapy to go.

Oh, there I go again assuming everyone knows what Auld Lange Syne is. According to Classic FM at https://www.classicfm.com/discover-music/auld-lang-syne-lyrics-and-origins/:

What does ‘Auld Lang Syne’ mean?

The most accurate plain English interpretation of the Auld Lang Syne’s famous title is ‘Old long since’, or ‘For the sake of old times’.

The song itself is reflective in nature, and is basically about two friends catching up over a drink or two, their friendship having been long and occasionally distant.

The words were written by Scottish poet Robert Burns in 1788, but Burns himself revealed at the time of composing it that he had collected the words after listening to the verse of an old man on his travels, claiming that his version of ‘Auld Lang Syne’ marked the first time it had been formally written down.

However, an earlier ballad by James Watson, named ‘Old Long Syne’, dates as far back as 1711, and use of the title phrase can be found in poems from as early as the 17th century, specifically works by Robert Ayton and Allan Ramsay.”

The song is usually sung at the stroke of midnight on New Year’s Eve and is closely associated with the ending of one year and the beginning of the next. That’s tomorrow night.

Before we leave 2019, let’s take a look at what’s been happening in the kidney world this year.

The ball got rolling, so to speak, with this announcement:

“The Advancing American Kidney Health initiative, announced on July 10, 2019 by the US Department of Health and Human Services (HHS), places the kidney community in the national spotlight for the first time in decades and outlines a national strategy for kidney diseases for the first time …. In order to achieve the Advancing American Kidney Health initiative’s lofty goals and make good on the KHI’s commitment to people with kidney diseases, drug and device innovation needs to accelerate.”

You can read the entire announcement from the Clinical Journal of the American Society of Nephrology at https://cjasn.asnjournals.org/content/early/2019/12/05/CJN.11060919.

The American Kidney Fund at https://www.kidneyfund.org/advocacy-blog/future-of-dialysis-innovation.html announced prizes for innovations in dialysis. We are now in phase two.

“HHS and ASN collaborated with patients, nephrologists, researchers and others in planning the competition. Several agencies, including the National Institutes of Health, the Food and Drug Administration, and the Centers for Medicare & Medicaid Services, are involved in this effort. AKF has provided comments to the KidneyX project, urging a focus on unmet needs and improving patient quality of life.

The KidneyX: Redesign Dialysis competition will have two phases. During phase one (late-October 2018-February 2019), innovators will be asked to come up with ideas to ‘replicate normal kidney functions and improve patient quality of life.’ During phase two (April 2019-January 2020), innovators will be asked to develop prototypes to test their ideas.

The HHS press release detailing the competition can be found here.

You can also read my blog about KidneyX by using the topic dropdown on the right side of the blog.

S.1676/H.R 3912 was passed this year, too. According to Renal Support Network at https://www.rsnhope.org/kidney-disease-advocacy/the-chronic-kidney-disease-improvement-in-research-and-treatment-act-of-2019-s-1676/, this is what the act provides:

“Specifically, the legislation does the following:

  • Medigap available to all ESRD Medicare beneficiaries, regardless of age.
  • Improve care coordination for people on dialysis by requiring hospitals to provide an individual’s health and treatment information to their renal dialysis facility upon their discharge. The individual or dialysis facility may initiate the request.
  • Increase awareness, expand preventative services, and improve coordination of the Medicare Kidney Disease Education program by allowing dialysis facilities to provide kidney disease education service. And it will allow physician assistants, nurse practitioners, and clinical nurse specialists, in addition to physicians, to refer patients to the program. And additionally, provide access to these services to Medicare beneficiaries with Stage 5 (CKD) not yet on dialysis.
  • Incentivize innovation for cutting-edge new drugs, biologicals, devices, and other technologies by maintaining an economically stable dialysis infrastructure. The Secretary would be required to establish a process for identifying and determining appropriate payment amounts for incorporating new devices and technologies into the bundle.
  • Improve the accuracy and transparency of ESRD Quality Programs so patients can make better decisions about their care providers.
  • Improve patient understanding of palliative care usage as well as access to palliative care services in underserved areas.
  • Allow individuals with kidney failure to retain access to private insurance plans as their primary payor for 42 months, allowing people to keep their private plans longer.”

I scooted over to EurekAlert! at https://www.eurekalert.org/pub_releases/2019-04/uoo-bkd041219.php when I realized they were announcing a drug I’d blogged about:

“’A drug like canagliflozin that improves both cardiovascular and renal outcomes has been eagerly sought by both patients with Type 2 diabetes and clinicians caring for them,’ added Kenneth Mahaffey, MD, professor of medicine at the Stanford University School of Medicine and co-principal investigator of the trial. ‘Now, patients with diabetes have a promising option to guard against one of the most severe risks of their condition.’

The researchers found the drug canagliflozin, a sodium glucose transporter 2 (SGLT2) inhibitor, was less effective at lowering blood sugar in people with reduced kidney function but still led to less kidney failure, heart failure and cardiovascular events such as heart attacks, strokes and death from cardiovascular disease.

Professor Perkovic said the results were impressive. ‘The substantial benefit on kidney failure despite limited effects on blood glucose suggest that these drugs work in a number of different ways beyond their effects on blood sugar. This is an area of intense ongoing research.’”

These are just a few of the innovations in kidney disease in 2019. I hope to see many more for us – like the FDA approval of the artificial kidney – in 2020.

Until next year,

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!

Zap!

To my surprise, hair started growing back in unexpected places after I finished chemotherapy. One place was my face. My face! And quite a bit of it, more than a bearded person would have. At least, that’s how it looked to me. I was surprised no one mentioned it to me, but supposed they were just glad I was still alive. I wasn’t worried. I’d just use laser hair removal… or would I? I do have Chronic Kidney Disease.

What did that mean as far as the laser hair removal? I remembered from when I’d had it done on the mustache area about seventeen years ago that it doesn’t work on white hair. No problem with this currently. This facial hair was growing in black and thick.

My goodness, you’d think I’d just be thankful to be alive at this point, too. But as is often attributed to Mr. Shakespeare, “Vanity, thy name is woman.” (Actually, he wrote “Frailty, thy name is woman,” but no one seems to remember that.) So, time to explore what CKD limits there are with laser hair removal.

Let’s start at the beginning with what it is. WebMD at https://www.webmd.com/beauty/laser-hair-removal#1  explained it this way:

“Laser hair removal is one of the most commonly done cosmetic procedures in the U.S. It beams highly concentrated light into hair follicles. Pigment in the follicles absorb the light. That destroys the hair.”

Just in case you need reminders,

“A hair follicle is a tunnel-shaped structure in the epidermis (outer layer) of the skin. Hair starts growing at the bottom of a hair follicle. The root of the hair is made up of protein cells and is nourished by blood from nearby blood vessels.

As more cells are created, the hair grows out of the skin and reaches the surface. Sebaceous glands near the hair follicles produce oil, which nourishes the hair and skin.”

Thank you to Healthline at https://www.healthline.com/health/hair-follicle#anatomy for that information. Notice I specified hair follicles since there are other kinds of follicles.

What else might we need defined. Oh yes, pigment. I used the definition of pigmentation instead since it was less convoluted to my way of thinking. The ‘ation’ part just means the action or process of whatever we’re discussing – in this case pigment. MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=9681  tells us it’s:

“The coloring of the skin, hair, mucous membranes, and retina of the eye. Pigmentation is due to the deposition of the pigment melanin, which is produced by specialized cells called melanocytes.”

Now, the limitations with CKD – if any. In the last 17 years, I’ve learned that not only wouldn’t white hair respond to laser hair removal, but gray and blonde won’t either. It will also be less effective on red hair. It all has to do with your melanin.

Whoa! This was unexpected. I not only did NOT find any research warning about CKD and laser hair removal, but found some that endorsed it. For instance, The National Center for Biotechnology Information (NCBI), which is part of the U.S. 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/pubmed/30005102.

“Laser hair reduction is a well-established modality for a wide range of medical indications. Laser hair reduction can be beneficial for hemodialysis patients who undergo repeated adhesive tape application and removal at their hemodialysis site during hemodialysis sessions. There is a paucity of published literature on efficacious laser hair removal treatments for hemodialysis patients. Herein, we present a case of a 50-year-old male (Fitzpatrick III) with end-stage renal disease on hemodialysis, who achieved successful laser hair reduction at his hemodialysis vascular access site with five sessions of a neodymium:yttrium-aluminium-garnet (Nd:YAG) laser (1064 nm) to improve his quality of life by reducing the hair burden at the adhesive tape site application. We recommend providing this safe and effective hair reduction treatment option for hemodialysis patients given the decreased quality of life associated with end stage renal disease and hemodialysis. J Drugs Dermatol. 2018;17(7):794-795.”

Let me translate the medicalese. This abstract means that using laser hair removal around the patient’s access site for dialysis made his life easier (and less painful) since the tape wasn’t sticking to his arm hair anymore. We all know how painful taking off adhesive anything can be if body hair is involved.

I have dug around in my computer for hours and hours. That’s all I found about laser hair removal and Chronic Kidney Disease. That’s the great thing about keeping an open mind; you find some unexpected information.

Here’s hoping you had a fun Halloween and didn’t eat too much candy, especially if you’re diabetic.

Talking about food, are you aware of Mrs. Dash’s seasonings for use instead of salt? It’s come to the point where I can taste even a teeny bit of salt. After almost a decade of not using salt, I’ve lost my taste for it… but Mrs. Dash? How does lemon pepper seasoning sound to you? Or garlic and herb? There are about 28 different flavors of seasoning. Go to the website at https://www.mrsdash.com/ to see for yourself. They also make marinades which was news to me. I usually choose the less spicy seasonings, but they have some zingers that you spicy food loving CKD patients will probably enjoy more.

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!

Dapagliflozin/SGLT2 inhibitors

I’ve been reading a lot about dapagliflozin lately. That’s a word I didn’t know. And this is the perfect opportunity to learn about it. Ready? Let’s start.

The obvious first stop to my way of thinking was Medline Plus, part of the U.S. Library of Medicine, which in turn, is part of the Institutes of National Health at https://medlineplus.gov/druginfo/meds/a614015.html.

“Dapagliflozin is used along with diet and exercise, and sometimes with other medications, to lower blood sugar levels in patients with type 2 diabetes (condition in which blood sugar is too high because the body does not produce or use insulin normally). Dapagliflozin is in a class of medications called sodium-glucose co-transporter 2 (SGLT2) inhibitors. It lowers blood sugar by causing the kidneys to get rid of more glucose in the urine. Dapagliflozin is not used to treat type 1 diabetes (condition in which the body does not produce insulin and, therefore, cannot control the amount of sugar in the blood) or diabetic ketoacidosis (a serious condition that may develop if high blood sugar is not treated).

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

SGLT2 inhibitors? Hey, that was going to be next week’s blog… or so ignorant me thought. The Food and Drug Administration (FDA) at https://www.fda.gov/drugs/postmarket-drug-safety-information-patients-and-providers/sodium-glucose-cotransporter-2-sglt2-inhibitors explains what a SGLT2 inhibitor is.

“SGLT2 inhibitors are a class of prescription medicines that are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. Medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, and empagliflozin. They are available as single-ingredient products and also in combination with other diabetes medicines such as metformin. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. The safety and efficacy of SGLT2 inhibitors have not been established in patients with type 1 diabetes, and FDA has not approved them for use in these patients.”

There are also quite a few warnings about amputations and urinary tract infections caused by SGLT2 inhibitors on this site, although they are dated 8/20/18.

 

So it seems that dapagliflozin is one of several medications classified as SGLT2 inhibitor. So let’s concentrate on SGLT2s inhibitors then. Hmmm, is this some medication requiring injections or do you just pop a pill? Pharmacy Times at https://www.pharmacytimes.com/publications/health-system-edition/2014/september2014/sglt2-inhibitors-a-new-treatment-option-for-type-2-diabetes more than answered my question. It’s their chart you see above this paragraph.

Wait a minute. According to their chart, dapagliflozin is not recommended if your GFR is below 60, or stage 3 CKD. Canagliflozin is not recommended if your GFR is below 45. Your kidney function is a big factor in whether or not this drug can be prescribed for you.

But why? Exactly how do the kidneys process this drug? The following diagram from The National Center for Biotechnology Information, part of the U.S. National Library, which in turn (again) is part of the National Institutes of Health at https://www.ncbi.nlm.nih.gov/core/lw/2.0/html/tileshop_pmc/tileshop_pmc_inline.html?title=Click%20on%20image%20to%20zoom&p=PMC3&id=3889318_13300_2013_42_Fig1_HTML.jpg will give you the visual. Basically, the SLGT2 inhibitor prevents the glucose in your blood from re-entering your blood stream after your blood has been filtered. The glucose has nowhere to go, so it exits your body via your urine along with the other wastes.

What about the side effects, since we already know the limitations of prescribing SLTG2 inhibitors? I thought  WebMd at  https://www.medicinenet.com/sglt2_inhibitors_type_2_diabetes_drug_class/article.htm#how_do_sglt2_inhibitors_work might enlighten us and they certainly did.

”On Aug. 29, 2018, the FDA issued a warning that cases of a rare but serious infection of the genitals and area around the genitals have been reported with the class of type 2 diabetes medicines called SGLT2 inhibitors. This serious rare infection, called necrotizing fasciitis of the perineum, is also referred to as Fournier’s gangrene.

SGLT2 inhibitors are FDA-approved for use with diet and exercise to lower blood sugar in adults with type 2 diabetes. SGLT2 inhibitors lower blood sugar by causing the kidneys to remove sugar from the body through the urine. First approved in 2013, medicines in the SGLT2 inhibitor class include canagliflozin, dapagliflozin, empagliflozin, and ertugliflozin. In addition, empagliflozin is approved to lower the risk of death from heart attack and stroke in adults with type 2 diabetes and heart disease. Untreated, type 2 diabetes can lead to serious problems, including blindness, nerve and kidney damage, and heart disease.

Seek medical attention immediately if you experience any symptoms of tenderness, redness, or swelling of the genitals or the area from the genitals back to the rectum, and have a fever above 100.4 F or a general feeling of being unwell. These symptoms can worsen quickly, so it is important to seek treatment right away.

On May 15, 2015, the FDA informed the public that SGLT2 inhibitors have been associated with increased risk of ketoacidosis in people with diabetes.

Common side effects

The most common side effect of SGLT2 inhibitors include:

Serious side effects of SGLT2 inhibitors include:

Whoa. It looks like there will have to be some serious discussions with your nephrologist before you agree to taking a SLGT2 inhibitor should he or she suggest it. Make sure you have your list of questions ready and someone to listen carefully and take notes.

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!

 

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!

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!

 

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!

Bulking Up

While I make sure to state that I’m not a doctor, I’m not always certain my readers get that. This is why I was so glad that a reader asked me a question about her doctor’s advice, prefacing her question by stating that she knows I’m not a doctor. I feel better.

Her question? It’s about fiber and Chronic Kidney Disease. But first, let’s find out exactly what fiber is. According to Harvard’s T. H. Chan School of Public Health at https://www.hsph.harvard.edu/nutritionsource/carbohydrates/fiber/,

Fiber comes in two varieties, both beneficial to health:

  • Soluble fiber, which dissolves in water, can help lower glucose levels as well as help lower blood cholesterol. Foods with soluble fiber include oatmeal, nuts, beans, lentils, apples and blueberries.
  • Insoluble fiber, which does not dissolve in water, can help food move through your digestive system, promoting regularity and helping prevent constipation. Foods with insoluble fibers include wheat, whole wheat bread, whole grain couscous, brown rice, legumes, carrots, cucumbers and tomatoes.

The best sources of fiber are whole grain foods, fresh fruits and vegetables, legumes, and nuts.”

We all know people need fiber, but do you know why? I found the answer stated the most succinctly on Verywell Fit’s site at https://www.verywellfit.com/all-about-fiber-2242215.

“Besides reducing the glycemic effect of meals and contributing to colon health, there is evidence that fiber may benefit us in other ways. It seems to help lower cholesterol and triglycerides, and also may help to prevent:

  • Ulcers, particularly in the beginning of the small intestine (duodenal ulcers)
  • Diabetes
  • Heart Disease
  • Cancer”

As a diabetic, I understand why I need fiber, but what about as a CKD patient? DaVita at https://www.davita.com/diet-nutrition/articles/basics/fiber-in-the-kidney-diet has that one covered:

“Adequate fiber in the kidney diet can be beneficial to people with chronic kidney disease (CKD) because it:

  • Keeps GI (gastrointestinal) function healthy
  • Adds bulk to stool to prevent constipation
  • Prevents diverticulosis (pockets inside the colon)
  • Helps increase water in stool for easier bowel movements
  • Promotes regularity
  • Prevents hemorrhoids
  • Helps control blood sugar and cholesterol”

Hmmm, this is very similar to reasons why everyone – CKD or not – should pay attention to fiber. But, take a look at this list of high fiber foods from the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/high-fiber-foods/art-20050948:

Fruits                                              Serving size              

Raspberries 1 cup 8.0
Pear 1 medium 5.5
Apple, with skin 1 medium 4.5
Banana 1 medium 3.0
Orange 1 medium 3.0
Strawberries 1 cup 3.0

 

Vegetables Serving size Total fiber (grams)*
Green peas, boiled 1 cup 9.0
Broccoli, boiled 1 cup chopped 5.0
Turnip greens, boiled 1 cup 5.0
Brussels sprouts, boiled 1 cup 4.0
Potato, with skin, baked 1 medium 4.0
Sweet corn, boiled 1 cup 3.5
Cauliflower, raw 1 cup chopped 2.0
Carrot, raw 1 medium 1.5

 

Grains Serving size Total fiber (grams)*
Spaghetti, whole-wheat, cooked 1 cup 6.0
Barley, pearled, cooked 1 cup 6.0
Bran flakes 3/4 cup 5.5
Quinoa, cooked 1 cup 5.0
Oat bran muffin 1 medium 5.0
Oatmeal, instant, cooked 1 cup 5.0
Popcorn, air-popped 3 cups 3.5
Brown rice, cooked 1 cup 3.5
Bread, whole-wheat 1 slice 2.0
Bread, rye 1 slice 2.0

 

Legumes, nuts and seeds Serving size Total fiber (grams)*
Split peas, boiled 1 cup 16.0
Lentils, boiled 1 cup 15.5
Black beans, boiled 1 cup 15.0
Baked beans, canned 1 cup 10.0
Chia seeds 1 ounce 10.0
Almonds 1 ounce (23 nuts) 3.5
Pistachios 1 ounce (49 nuts) 3.0
Sunflower kernels 1 ounce 3.0

*Rounded to nearest 0.5 gram.

Source: USDA National Nutrient Database for Standard Reference, Legacy Release

Looks delicious, doesn’t it. So what’s the problem? Well, CKD patients are restricted in their diets… and even the permissible foods are restricted as far as amounts we can eat. It all depends upon our most current lab results. Do we need less potassium? Then we need to eat even less potassium rich food. The same is true for all the electrolytes. That means our diets may not contain enough fiber.

CKD is an inflammatory disease. Fiber can lower inflammation. So what’s a CKD patient to do?

My reader was recommended supplements by her doctor. One was Solfi Green, something new to me.

I went to MIMS in the Philippines (while a new site to me, they self-describe as “Asia’s one-stop resource for medical news, clinical reference and education”)  at https://www.mims.com/philippines/drug/info/solfi%20green?type=full  for the ingredients and found this:

Ingredients: Fructose, Mixed Fruit Powder, Mixed Vegetable Powder, Soluble Dietary Fiber, Physllium (sic) Husk, Oat Fiber, Wheat Fiber, Citric Acid, Wheat Grass, Alfalfa, Rooibos Extract, Contains Permitted Food Conditioner.”

Wait a minute, Psyllium Husk? I clearly remember writing that this can cause inflammation of the gastrointestinal tract. We need to decrease, not increase inflammation as CKD patients. I would steer clear of this.

Would my reader need to steer clear if she were a dialysis or transplant patient? Drugs.com at https://www.drugs.com/drug-interactions/psyllium.html  doesn’t seem to think any specific dosage reduction is necessary, but they also don’t mention it can cause inflammation or that it is high in potassium. Dialysis patients, beware. If you’re a transplant, you simply need to watch your labs as you would anyway. Just keep in mind psyllium husk can be both an inflammatory and laxative.

Another supplement suggested to my reader is C-lium fiber. I went directly to their website at http://c-liumfibre.com/faq/index.html#Q15  and found this warning in their FAQ:

“If you have rectal bleeding, history of intestinal blockage, difficulty swallowing, diabetes mellitus, heart disease, hypertension, kidney disease, or if you are on a low-sugar or low-sodium diet, contact your doctor before taking C-Lium Fibre.”

Obviously, my reader has gone to her doctor since these two supplements were prescribed by her doctor. I have to make a confession here. When something is prescribed for me, I research it. If I don’t like what I find, I speak with my doctor. If she can explain in more detail or tell me something that is not in my research which I should be aware of to make an informed decision and it’s all positive, I go with the prescription. If not, well….

Of course, you have to make your own decision, just as I do. Here’s hoping this has helped my reader.

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!

A Creatinine Christmas Present

Tomorrow is Christmas and a Merry Christmas to those of you who celebrate. The day after Christmas Kwanzaa begins, so a Happy Kwanzaa to those of you who celebrate. But back to Christmas right now: today’s blog is a present to a reader who joined me way back when I first started blogging and has since become a close online friend.

You see, her creatinine is rising but she’s barely eating and – since she has multiple physical conditions – can’t exercise. She’s flummoxed and so was I because food and muscle waste are the two usual causes of rising creatinine levels in the blood. I decided to try to help her sort this out now even though she’ll be seeing her nephrologist right after the New Year.

A good place to start is always at the beginning. By this, I wonder if I mean the beginning of my Chronic Kidney Disease awareness advocacy as the author of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and the blog or if I mean the basics about creatinine. Let’s combine them all. The following definition is from the book which became the earliest blogs:

Creatinine clearance: Compares the creatinine level in your urine with that in your blood to provide information about your kidney function”

Hmmm, that didn’t exactly work. Let’s try again. Bingo! It was in SlowItDownCKD 2014,

“Creatinine: chemical waste product that’s produced by our muscle metabolism and to a smaller extent by eating meat. {MayoClinic.org}”

Red meat? No, that’s not it. My friend doesn’t eat meat at all, as far as I know. Beaumont Hospital Kidney Centre at http://www.beaumont.ie/kidneycentre-forpatients-aguidetokidneydisease-die offers the following information concerning food and creatinine:

“Protein intake from the diet is important during the progression of chronic kidney disease and also when you commence dialysis. The protein we eat is used for tissue repair and growth. Any unused protein is broken down into waste products, including urea and creatinine. As your kidneys are unable to excrete urea and creatinine properly, they build up in your blood and cause symptoms such as nausea and loss of appetite.

By eating large amounts of protein foods e.g. meat, fish, chicken, eggs, cheese, milk and yoghurt before commencing dialysis [Me here, that means those of us who are pre-dialysis like me], you will affect the buildup of urea and creatinine in your blood. An appropriate daily intake of protein should be advised by your dietician.

However, once dialysis treatment has commenced it is important to make sure that your body is getting enough protein to prevent malnutrition. Some of your stores of protein are lost during the haemodialysis and CAPD sessions. How much protein you need depends on your body size and is specific to each individual.”

And the ‘muscle metabolism’ in our definition? This deals with the way muscles use energy. The waste product of this process is creatinine.

Medical News Today at https://www.medicalnewstoday.com/articles/320113.php had something to say about exercise and creatinine:

“Strenuous exercise, such as weight training or resistance exercise, may cause high creatinine levels.

Muscle activity produces creatinine; the more the muscles work, the more creatinine is in the blood. While regular exercise is essential for good health, overexertion can cause the creatinine levels in the blood to spike.

A 2012 study noted that intense exercise increased creatinine levels in the bloodstream temporarily. It may be best for people to avoid strenuous activity until they have completed any treatment for the cause of the high creatinine levels.

However, people should not avoid exercise altogether, except in some extreme circumstances.

To maintain their exercise regimen, people who like weight training or resistance exercises could switch to yoga and body weight exercises during treatment. People who prefer cardio exercises, such as running or cycling, could consider changing to walking or swimming.”

My friend does not exercise. So what else could it be that is raising her creatinine? I went to New Health Advisor at https://www.newhealthadvisor.com/causes-of-elevated-creatinine.html which was quite comprehensive in answering the question.

“Kidney diseases or disorders can lead to high creatinine levels. Since the kidneys are the filters of wastes from the bloodstream, kidney damage means that there will be a buildup of creatinine beside other waste products in the body. Kidney conditions such as glomerulonephritis, acute tubular necrosis, kidney infection (pyelonephritis) and kidney failure can cause high creatinine levels. Reduced blood flow to the kidneys can also have a similar effect.

Other causes of elevated creatinine levels in blood include shock, dehydration, and congestive heart failure. These conditions lead to a reduction in blood flow to the kidneys, which interferes with their normal functions. High blood pressure, diabetic neuropathy, muscular dystrophy, rhabdomyolysis, eclampsia, and preeclampsia can also cause elevated serum creatinine.

In case a patient with renal dysfunction gets an infection like pneumonia, urinary tract infection, intestinal infection, or a cold, the creatinine level may rise within a short time.

Urine abnormalities such as long-term hematuria and proteinuria can also lead to high creatinine levels.

Taking drugs that have renal toxicity properties can also raise the levels of creatinine in the bloodstream. Such medications include chemotherapy drugs, ACE inhibitors, and NSAIDs like aspirin and ibuprofen among others.”

They also included excessive exercise, too much protein in the diet, fatigue, and inadequate rest.

I noticed each site I looked at mentioned that creatinine increase could be temporary. Perhaps a re-test is in order for my friend.

I know you’re already asking why she was surprised to find this on her lab report. She already has CKD which could be a cause of high creatinine levels. What worried her is that they are rising. Is her CKD getting worse? Or did she neglect to get adequate rest (as one possibility) before this particular blood test?

I can’t answer that since I’m not a doctor, although I hope I’ve been able to alleviate her worry until she gets to go to her nephrologist next week. Here’s hoping this was a welcome Christmas present, my friend.

Until next week,

Keep living your life!

Shining a Light on 1in9 

Last week, I began my blog post by mentioning that kidney disease awareness advocates have a habit of finding each other. This time, we had a little help.  I transferred to a new nephrologist because he was so much closer to my house. We spent some time getting to know each other as people new to each other do. Then he told me about another patient of his who is also working on spreading awareness, but via a documentary. Raymond, a transplant recipient that you’ll meet in a moment, and his brother who is also his donor, are both veterans. It made sense to me when his wife and partner on their documentary, Analyn Scott, suggested I post her guest blog about their project today since Veterans’ Day which was yesterday. Readers, meet Analyn; Analyn, meet the readers of the blog.

By now it shouldn’t surprise me that as I’m out and about I’m constantly meeting more and more people with a connection to kidney disease. That was not the case 21 years ago, or even four years ago for that matter. What changed? The opening of my eyes to statistics I was previously unaware of, and frankly I found to be quite shocking and unacceptable. I’ll get to those stats a little later.

21 years ago this month I met my now husband, Raymond Scott, on a blind date. A year out of the Army, here was this 29 year old handsome, kind, Southern gentlemen that swept me off my feet. Little did either of us know that three months later his kidneys would unexpectedly fail and that our journey would lead us to where we are today.

Like many others, although Raymond ‘crashed’ into dialysis, his previous medical records revealed that he had Kidney Disease, but he was not properly made aware of his status or what he could do to improve it. So our journey with Chronic Kidney Disease (CKD) began together with Raymond finding out he had End Stage Renal Disease (ESRD) and needing to start on dialysis right away.

Throughout the past 20, going on 21 years, Raymond has been on both peritoneal dialysis and in-center hemodialysis, had a kidney transplant that lasted for five years, and for the past five years has his hemodialysis treatments administered by me five days a week from the comforts of our home. With that, we’ve also had many twists and turns with Raymond’s health that often go along with ESRD. But, despite our own experiences, it wasn’t until we were invited as guests to attend the National Kidney Foundation’s Dancing With The Stars Arizona 2015 Gala that our eyes would start to be opened to the staggering statistics surrounding Kidney Disease.

As we enjoyed the lively and energetic dance performances I turned to Raymond and teasingly said, “Hey, that could be you dancing next year.” My eyes got big and my giggles stopped, and before I could get the words out of my mouth, Raymond already knew that look on my face very well and anticipated my next words, “Wait, why not you? You can do this!.”

Sure enough, Raymond was the first celebrity star dancer who was an active dialysis patient at the National Kidney Foundation’s 10th Annual Dancing With the Stars Arizona Gala on February 20th, 2016…..18 years to the exact day that his kidneys failed! He and his dance partner and instructor, Brianna Santiago, spent six months of grueling practices preparing for their energetic performance to Pharrell William’s song Happy, demonstrating the improved quality of life home dialysis can provide, and that dialysis does not have to be a death sentence.

As we picked up the torch of advocacy, we were led to start filming a documentary and create a non-profit organization to create hope and change the trajectory of kidney disease. As I was brainstorming with a dear friend about potential names for the organization, she said, “Wait, go back to that statistic you mentioned: 26 Million Americans, 1 in 9 adults have Kidney Disease….that’s it…..1in9.” That and meeting our incredible videographer was how 1in9 was birthed!

You may have guessed it, but 1 in 9 American adults having Kidney Disease was one of those stats that caught us off guard. And hearing that 90% of those with CKD weren’t aware was totally unacceptable to us. Diabetes is the leading cause of Kidney Disease, and high blood pressure….which took Raymond’s kidneys….is second. Kidney disease is the ninth leading cause of death in the U.S. and kills more people than breast cancer or prostate cancer. Surprising, right? It sure was to us, and we figured if this was news to us after all these years of living with it, then the general population must really be in the dark.

Our vision for 1in9 is to save millions of lives globally through awareness, prevention, and expedited research and development of regenerative medicine treatments and solutions. Last year our family headed out across country on an RV tour to raise awareness and film, while keeping up Raymond’s dialysis treatments five days a week on the RV. We met some incredible people near and far that continue to inspire us to keep pushing the wheels of change. Like our friends at…..

University of Arizona http://deptmedicine.arizona.edu/news/2017/1in9-kidney-challenge-founders-visit-ua-nephrology-faculty-researchers

Washington University https://nephrology.wustl.edu/1in9-kidney-awareness-documentary-visits-division-nephrology/

The Veterans’ Administration Medical Center in Washington DC https://www.washingtondc.va.gov/features/Living_Well_with_Kidney_Disease.asp

And our visit to UCSF with Dr. Shuvo Roy, co-Director of The Kidney Project, where we were able to hold the 3D printed bio-artificial kidney prototype in our own hands! Friends, if you haven’t already heard, change is not only on the way, it’s here!

We are still filming our documentary, releasing our 1in9 Compilation Book next March, and excited about other impactful programs we are launching that will help us bring Kidney Disease out of the public shadows of silence and misunderstanding and confront it head on with solutions.

To learn more and link arms to help keep the torch illuminating bright on our life saving mission please visit, follow, and/or contact us at: www.1in9kidneychallenge.com 
www.facebook.com/1in9kidneychallenge/ 1in9kidneychallenge@gmail.com

Analyn and Raymond have asked me to contribute a chapter to their book. I will be delighted to do so. As a Chronic Kidney Disease awareness advocate, I can’t begin to tell you how much pleasure I have at meeting more and more people with the same mission in life. We get to help each other spread awareness.

Until next week,

Keep living your life!

Dead People

Hmmm, maybe that title should read “Famous People Who Died from Kidney Disease.” Let’s go back a bit to see what I’m talking about. By now you know my youngest married on the 6th of this month. Thank you to everyone who sent their best wishes. She and her husband did a wonderful job of creating the wedding they wanted, just as the new Mr. & Mrs. Nielson are doing a terrific job of creating the life they want together.

Of course, her sister came out from New York to join the festivities. As usual, she stayed with Bear and me. That gave us plenty of time to gab between the pre-wedding potluck at my house and all the preparations for the wedding. At one point, I casually mentioned to her that Jean Harlow died of kidney disease. That fascinated Nima for some reason. As I explained the how and why, she asked me why I hadn’t yet written a blog about famous people who died from kidney disease.

At first, I thought it a bit macabre but then I rethought that. My new thinking ran along the line of, “What a perfect blog for Halloween week.” By the way, that’s my brother’s birthday and there is nothing spooky about him. Oh, our preconceptions.

Back to Jean Harlow. For those of you who don’t know, she was not only an American film actress during the 1930s, but a sex symbol as well.

This is from the official Jean Harlow website at https://www.jeanharlow.com/about/biography/

“While filming Saratoga in 1937, Jean was hospitalized with uremic poisoning and kidney failure, a result of the scarlet fever she had suffered during childhood. In the days before dialysis and kidney transplants, nothing could be done and Jean died on June 7, 1937.”

A couple of reminders:

Uremic poisoning is what we now call uremia. This type of poisoning happens when the kidneys can’t filter your blood.

Kidney failure means your kidneys don’t work anymore. One of their jobs is to filter urea from your blood so that it doesn’t build up resulting in uremia.

As for the scarlet fever, “In general, appropriately diagnosed and treated scarlet fever results in few if any long-term effects. However, if complications develop for whatever reason, problems that include kidney damage, hepatitis, vasculitis, septicemia, congestive heart failure, and even death may occur.“ (Courtesy of MedicineNet at https://www.medicinenet.com/scarlet_fever_scarlatina/article.htm)

Dialysis was invented in 1943 by Dr. Willem Kolff. It wasn’t until the 1950s before it was perfected, but for Acute Kidney Injury (AKI) only. To make matters worse, few machines were available. Dr. Belding Scribner then developed a shunt to make dialysis effective for End Stage Renal Disease patients. In other words, not only those with short term kidney injuries, but also those whose kidneys were shutting down permanently. It wasn’t until 1962 that he opened the first outpatient dialysis unit. Later on, he developed the portable dialysis machines.

Keep those years in mind. Keep in mind also that there was no dialysis or transplantation when these people died of kidney disease.

You may remember the blog I wrote about the Austrian composer Wolfgang Amadeus Mozart. He died of kidney failure back in 1792… way before dialysis or transplantation.

Transplantation? You’re right; I haven’t defined it yet. You cannot live without a functioning kidney unless you are on dialysis OR a new kidney – either from a cadaver or a life donor – is placed in your body. It is not a cure for kidney failure, but a treatment. Transplantees take anti-rejection medications for the rest of their lives.

Have you heard of Sarah Bernhardt? She was a French stage actress who died of kidney disease in 1923. She’d also been a silent screen actress, but reportedly didn’t care for film acting. Notice the year.

Emily Dickinson, the celebrated American poet died of Bright’s disease in 1886. (She was still alive during Portal of Time. I wonder if Jesse read her work?) Oh, you forgot what Bright’s disease is? No problem. New-Medical Net at https://www.news-medical.net/health/Brights-Disease-Kidney-Disease.aspx tells us it is “… a historical term that is not currently in use. It referred to a group of kidney diseases – in modern medicine, the condition is described as acute or chronic nephritis.”

It would make sense to define nephritis now. The suffix “itis” means inflammation of and “neph” refers to the kidneys. So, nephritis is an inflammation of the kidneys and can be due to a number of causes.

Let’s not forget the great Irish playwright George Bernard Shaw. He moved to London at 20 years old and became a critic and political activist as well. You’ve heard of the play ‘My Fair Lady’? It was based on his ‘Pygmalion’. He died of kidney disease just before he might have been saved… in 1950.

I think the one who surprised me the most was Buffalo Bill Cody. He was not just the leader of his wild West show, but also a bison hunter, scout (as in finding the way for wagon trains), gold rush participant, possibly a Pony Express rider, and actor. He died in 1917 of kidney failure.

Other famous people who have died of kidney disease include Art Tatum, Color Porter, Douglas MacArthur, Alex Karras, Manute Bol, Ernest Borgnine, Don DeLuise, Art Buchwald, Norman Mailer, Sandra Dee, Barry White, Erma Bombeck, Marlene Dietrich, and Laurence Olivier.

This blog is not meant to scare the wits out of you. Well, maybe it is in a way. Famous people from all walks of life – athletes, writers, actors, musicians, singers, military members, and others – have died of kidney disease. Many before the invention of dialysis and transplantation. Some of kidney disease in combination of other diseases. And some because they didn’t know they had kidney disease.

My point? If you belong to any of the high risk groups for kidney disease, get yourself tested. We’re talking simple blood and urine tests here. The high risk groups are “diabetes, hypertension and a family history of kidney disease. African Americans, Hispanics, Pacific Islanders, Native Americans and Seniors.” Thank you to the National Kidney Center at http://www.nationalkidneycenter.org/chronic-kidney-disease/risk-factors/ for this list.

Until next week,

Keep living your life!

The Reluctant Donor

I’m pretty sure I’ve mentioned the exceedingly personable folks I met at the kidney disease think tank and then the AAKP National Patient Meeting earlier this year. Actually, you’ve already heard from one from them. This past July, Cindy Guentert-Baldo guest blogged about being a PKD patient. Today’s guest blog by Suzanne F. Ruff looks at the other side of same kidney disease. Ms. Ruff is no stranger to spreading awareness of kidney disease as you can see by her credentials:

author of The Reluctant Donor

Freelance writer for The Charlotte Observer

Executive Board of Directors American Association of Kidney Patients (AAKP)

Living Donor Council of The National Kidney Foundation (NKF)

Published in Chicken Soup for the Soul: Grieving & Recovery & Say Hello to A Better Body

Before you start reading Suzanne’s guest blog, I feel it only fair to warn you it left me in tears.

Why am I called The Reluctant Donor?  A simple answer is because I cried and whined all the way into the operating room to donate a kidney to my sister.  But it’s really not simple.  It’s complicated.

I really didn’t like my sister.  Okay, okay, I know.  If you have a sibling, you probably know what I’m talking about . . . siblings can drive you crazy.  If you don’t have a sibling, well, it’s complicated.  That’s part of the reason I titled my book, The Reluctant Donor, but not quite the whole reason.

On my journey to become a living kidney donor to a sister I didn’t like, I learned a lot of things.  Probably the most important thing is that although I may not have liked my sister, I discovered how much I love her. When I didn’t like her, it was because she was crabby grouchy and scared.  I learned something from that, too.  My sister was crabby and grouchy because she was ill…very, very ill.  That’s what happens when you don’t feel well, when your kidneys fail, and when you’re scared, terrified and afraid: you are not yourself.

I also learned denial is a powerful thing.  My sister was in denial.  Kidney disease does that to you; my sister and I should know.  We were born into a family chockful of people with kidney disease. Polycystic kidney disease or ADPKD (Autosomal Dominant Polycystic Kidney Disease) to be exact. This is a hereditary disease that causes cysts to grow around both kidneys causing the kidneys to fail.  If one of your parents carries the gene (our mother did), you have a 50% chance of inheriting the disease.   My sister, along with my other sister, inherited that gene from our mother.  Our mother, along with Mom’s two brothers and two sisters, inherited that gene from their mother.

Yes, sirreee, we were chockful of kidney disease. Over twenty-three family members now have or had the disease. We’ve had ten deaths from kidney disease, including our mother.

I did not inherit the gene that causes the disease.  Many people ask me if I feel guilty, sort of like survivor’s guilt, because my sisters have the disease and I don’t. I don’t feel guilty.  A person has no power over what genes they inherit.  But, I do feel a tremendous responsibility to do what I can to eradicate the disease that has ravaged my family.  So, I wrote my book. 

There is no cure for PKD.  Growing up I learned I was named after my grandmother who died of polycystic kidney disease before I was born.  When her kidneys failed, the doctors told her there was nothing the doctors could do for her. Mom described my grandmother’s death: Mom, a teenager then, her father, her brothers and sisters were gathered around my grandmother’s hospital bed, when my grandmother sat straight up and said, “Here I am, Lord!” and died.

The disease then hit five of my grandmother’s six children, including my mother. Through their suffering and deaths, I have learned courage and faith.  One of my aunts diagnosed with PKD in the 1960’s was one of the first to be able to try the new-fangled machine called dialysis. But, alas! There were not enough dialysis machines!!!!!  My aunt was a Roman Catholic nun.  She offered to give up her spot on the waiting list and died a few months later. She was 45 years old.

Presently, my three cousins, all brothers, suffer from polycystic kidney disease.  Their eldest brother, John, passed away from polycystic kidney disease (PKD) in 1996. Two of the three brothers are on dialysis and the other brother will need dialysis soon.    Their sister has offered to be a living donor to one of them, but each of them insists the other brother accept her kidney. A stalemate … as the disease progresses.

I have other stories about my magnificent family, but this blog is near its end.  You might even say none of this explains why I cried, kicked and screamed my way into the operating room to donate one of my kidneys to my sister.

Plain and simple: I was afraid.  I don’t like hospitals.  I hate them.  Growing up, the people I loved most died in hospitals.  I don’t like needles. I don’t like blood.   I was afraid I would die, afraid the surgery wouldn’t be a success, afraid my life would change because I donated.  I was always afraid of polycystic kidney disease as one by one, people I loved suffered and died.

Something happened to me, though, when my sister collapsed in kidney failure.  My faith kicked in and I stepped up.  We are blessed.  The surgery was a success. My sister is now a grandmother. Life is so precious!

Having gained both another son-in-law and my first grandchild this year, I can only agree with Suzanne… and life was precious for me before. I’m reading her book now and enjoying it. Should you decide to read Suzanne’s book (and any and all of mine), be sure to leave a review. Those are what get our books recognized… and in Suzanne and my cases, spreads awareness of kidney disease.

Until next week,

Keep living your life!

 

How Does That Work Again?

I’ve had so many questions lately about how clinical trials work that when Antidote asked me if I’d consider including their infograph in a blog, I jumped at the chance. There’s even more information about clinical trials at https://www.antidote.me/what-are-clinical-trial-phases.

I’ve written about Antidote before… and I’ve written about clinical trials before. It seems more and more people are becoming interested in the process for a multitude of diseases, not only Chronic Kidney Disease.

As a newly diagnosed diabetes patient, I’ve noticed clinical trials for diabetes. A family member has Alzheimer’s; his neurologist keeps an eye out for clinical trials for him. Whatever your disease is, you can search for clinical trials.

While this is not everyone’s cup of tea, it is a chance to help others who may develop the same diseases in the future. Who knows, maybe the new treatment will be FDA approved during your own lifetime and help you with your own disease.

In case you are one of those people who have always wondered just what the FDA is, their website is https://www.fda.gov. That’s right: it’s a government site which is part of the U.S. Health and Human Services. What’s that? You’d like a more precise definition?

No problem. This is from the United States of American Government website at https://www.usa.gov/federal-agencies/food-and-drug-administration and offers basic information about the FDA.

Food and Drug Administration

The Food and Drug Administration (FDA) is responsible for protecting the public health by assuring the safety, efficacy, and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation. The FDA also provides accurate, science-based health information to the public.

                                                                                                                                                      Agency Details

Acronym: FDA

Website: Food and Drug Administration (FDA)

Contact: Contact the Food and Drug Administration

 Report a Problem with a Product

Main Address: 10903 New Hampshire Ave.
Silver Spring, MD 20993

Toll Free: 1-888-INFO-FDA (1-888-463-6332)

Forms: Food and Drug Administration Forms

Government branch: Executive Department Sub-Office/Agency/Bureau

By the way, they are also responsible for both recalls and safety alerts for the treatments they’ve approved.

In the infograph above, you’ll notice, “Sometimes, only healthy volunteers participate.” in Phase 1. Should you decide to apply for a clinical trial, you need to keep this in mind to save yourself a bit of heartache. I firmly believe in paying back for the wonderful things in my life and have applied for several clinical trials for other diseases in an effort to do so. I must have missed the small print because I was rejected for having CKD.

I wanted to help eradicate or ameliorate whatever the disease was. Sometimes it was a disease that was ravaging a loved one. It was just a little bit of a heartbreak not to be able to do so.

As for Phase 2, I went to the blog’s site at gailraegarwood.wordpress.com to use the antidote widget at the bottom of the right side of the page. It’s the turquoise one. You can’t miss it. Face Palm! You can also go directly to www.antidote.me to search for clinical trials.

Why Antidote? It’s simply an easier way to find a clinical trial. This is from SlowItDownCKD 2017:

“Antidote Match™

Matching patients to trials in a completely new way
Antidote Match is the world’s smartest clinical trial matching tool, allowing patients to match to trials just by answering a few questions about their health.

Putting technology to work
We have taken on the massive job of structuring all publicly available clinical trial eligibility criteria so that it is machine-readable and searchable.

This means that for the first time, through a machine-learning algorithm that dynamically selects questions, patients can answer just a few questions to search through thousands of trials within a given therapeutic area in seconds and find one that’s right for them.

Patients receive trial information that is specific to their condition with clear contact information to get in touch with researchers.

Reaching patients where they are
Even the smartest search tool is only as good as the number of people who use it, so we’ve made our search tool available free of charge to patient communities, advocacy groups, and health portals. We’re proud to power clinical trial search on more than a hundred of these sites, reaching millions of patients per month where they are already looking for health information.

Translating scientific jargon
Our platform pulls information on all the trials listed on clinicaltrials.gov and presents it into a simple, patient-friendly design.

You (Gail here: this point is addressed to the ones conducting the clinical trial) then have the option to augment that content through our free tool, Antidote Bridge™, to include the details that are most important to patients – things like number of overnights, compensation, and procedures used. This additional information helps close the information gap between patients and researchers, which ultimately yields greater engagement with patients.

Here’s how Antidote Match works
1. Visit search engine → Patients visit either our website or one of the sites that host our search.
2. Enter condition → They enter the condition in which they’re interested, and begin answering the questions as they appear
3. Answer questions → As more questions are answered, the number of clinical trial matches reduces
4. Get in touch: When they’re ready, patients review their matches and can get in touch with the researchers running each study directly through our tool

Try it from the blog roll. I did. I was going to include my results, but realized they wouldn’t be helpful since my address, age, sex, diseases, and conditions may be different from everyone else’s. One caveat: search for Chronic Renal Insufficiency or Chronic Renal Failure (whichever applies to you) rather than Chronic Kidney Disease.”

Before I sign off, this came in from the American Association of Kidney Patients:

Please join us on Tuesday, October 9, 2018 at 1 p.m. ET for an educational webinar on Making the Perfect Team: Working with Your Dialysis Technician in partnership with National Association of Nephrology Technicians/Technologists (NANT).  Keep in mind that’s tomorrow. Hit this link if you’d like to register https://register.gotowebinar.com/register/7744206034004582403

Until next week,

Keep living your life!

For the Younger Women

You’d think that leaves me out, but you’d be wrong. I’m writing for pre-menopausal women…and for anyone who wants to know what menstrual cycles have to do with Chronic Kidney Disease. I’m one of those who wants to know.

I was already in my sixties when I was diagnosed with CKD, but I have many woman readers who have not yet reached that rite of passage known as menopause. Does their menses have any effect on their CKD, I wondered? Or, conversely, does their CKD have any effect on their menses?

Back to the beginning for those who have just plain forgotten what the menses is and why women experience it. Thank you to the Medical Dictionary at https://medical-dictionary.thefreedictionary.com/menses for starting us off today. Menses is:

“the periodic discharge from the vagina of blood and tissues from a non-pregnant uterus; the culmination of the menstrual cycle. Menstruation occurs every 28 days or so between puberty and menopause, except during pregnancy, and the flow lasts about 5 days, the times varying from woman to woman.”

I clearly remember the days of anxiously awaiting my period only to find I had miscalculated its start. Commence the washing-out-the-underwear-nightly-during-my-period era which lasted decades. It was messy, but apparently menstruation was necessary. Why? you ask.

Back to Wikipedia. By the way, when I was teaching research writing in college, I always found this a good source to start researching from despite the fact that anyone can edit it. This is the explanation I was looking for. I found it at https://en.wikipedia.org/wiki/Menstrual_cycle.

“The menstrual cycle is the regular natural change that occurs in the female reproductive system (specifically the uterus and ovaries) that makes pregnancy possible. The cycle is required for the production of oocytes [Me here: this means an immature egg] and for the preparation of the uterus for pregnancy….”

As someone who had always planned to be a mother, you can see why I felt this was a necessary – albeit messy – function of my body. I have a biological grandchild and another being planned. Thank you, menstruation.

But what if I had developed CKD when I was premenopausal? Would things have been different for me? DaVita at https://www.davita.com/education/kidney-disease/risk-factors/womens-health-risks-and-chronic-kidney-disease-ckd explains some of what I might have had to deal with.

“When a woman has chronic kidney disease her periods tend to be irregular. Once she begins dialysis her periods may even stop altogether. As kidney function drops below 20 percent of normal, a woman is less likely to conceive because dialysis doesn’t perform all of the tasks of the kidneys. The body retains a higher level of waste products than it would with a normal kidney, which can prevent egg production and affect menstruation.

Erythropoietin treatments will cause about 50 percent of woman on dialysis to get their periods again. This is attributed to the improved hormone levels and the treatment of anemia. Therefore, erythropoietin treatments can increase a woman’s fertility, so birth control should be used if a woman is sexually active and does not want to become pregnant.”

Okay, but I’m not on dialysis and my GFR hovers in the 50-55% range. I see from the quote above that my periods might have become irregular. I also noted that a ‘higher level of waste products is being retained.” (Why does that give me the creeps?)

Let’s go back to those waste products. Remember what they are? Shodor, a site for undergraduate students, at https://www.shodor.org/master/biomed/physio/dialysis/kidney.htm was helpful here:

“The kidneys are the filtering devices of blood. The kidneys remove waste products from metabolism such as urea, uric acid, and creatinine by producing and secreting urine. Urine may also contain sulfate and phenol waste and excess sodium, potassium, and chloride ions. The kidneys help maintain homeostasis by regulating the concentration and volume of body fluids. For example, the amount of H+ and HCO3  secreted by the kidneys controls the body’s pH.”

Whoa! I wouldn’t want even more of these substances in my body. Not only would they make the CKD worse, but also its effects on my body. According to Medical News Today at https://www.medicalnewstoday.com/articles/172179.php, these effects include:

  • anemia
  • blood in urine
  • dark urine
  • decreased mental alertness
  • decreased urine output
  • edema – swollen feet, hands, and ankles (face if edema is severe)
  • fatigue (tiredness)
  • hypertension (high blood pressure)
  • insomnia
  • itchy skin, can become persistent
  • loss of appetite
  • male inability to get or maintain an erection (erectile dysfunction)
  • more frequent urination, especially at night
  • muscle cramps
  • muscle twitches
  • nausea
  • pain on the side or mid to lower back
  • panting (shortness of breath)
  • protein in urine
  • sudden change in bodyweight
  • unexplained headaches

Is there anything else I should know?

The Huffington Post at https://www.huffingtonpost.com/leslie-spry-md-facp/women-with-chronic-kidney_b_10163148.html let Dr. Leslie Spry, Spokesman for the National Kidney Foundation, answer this one and I will, too.

“Women with CKD have been shown to commonly experience menstrual irregularities. This can include excessive bleeding, missed periods, and early onset of menopause. In studies of patients with CKD, women enter menopause from 3 to 5 years earlier than patients without CKD. Treatment can be very challenging. Studies of estrogen replacement therapy have shown an increased risk of heart disease and blood clotting disorders. Kidney transplantation will usually correct these abnormalities.”

Now I wonder if I’d had CKD even earlier than when I’d caught it on a lab report a decade ago. Excessive bleeding? Check. Early menopause? Check. Hmmm.

But wait. There’s some good news in here, too.

“’Thus, recurring changes of sex hormone levels, as brought about by the natural menstrual cycle, might be involved in periodic tissue remodeling not only in reproductive organs, but to a certain extent in the kidneys as well,’ she added.

Lechner [Me here: She’s the study author – Dr. Judith Lechner, of the Medical University of Innsbruck in Austria] hypothesizes that estrogen might help to replace damaged cells. During cycle phases of high estrogen exposure, kidney cells might be induced to grow, she explained, ‘while at time points of decreasing estrogen levels damaged or simply older cells might be discarded into the urine.’”

You can read more about this small study published in the Journal of the American Society of Nephrology in Medical Daily at https://www.medicaldaily.com/sex-differences-menstrual-cycle-kidney-failure-384251.

Now I know… and so do you. Younger women, your CKD menstrual future may not be as dismal as you’d thought.

Until next week,

Keep living your life!

Backed Up

Granted this is weird, but I have wondered for quite a while what – if anything – constipation has to do with Chronic Kidney Disease. Maybe my memory is faulty (Hello, brain fog, my old friend), but I don’t remember having this problem before CKD entered my life… or did I?

In my attempt to find out if there is a connection, I hit pay dirt on my first search.

“Chronic kidney disease (CKD) and end-stage renal disease (ESRD) are more likely to develop in individuals with constipation than in those with normal bowel movements, according to a new study published online in the Journal of the American Society of Nephrology.

More severe constipation, defined as using more than one laxative, was associated with increasing risks of CKD and its progression.”

You can read the entire Renal and Urology News article at https://www.renalandurologynews.com/chronic-kidney-disease-ckd/constipation-associated-with-ckd-esrd-risk/article/572659/.

Wait a minute. This is not quite as clear as I’d like it to be. For example, what exactly is constipation? The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/digestive-diseases/constipation was of help here:

“Constipation is a condition in which you may have fewer than three bowel movements a week; stools that are hard, dry, or lumpy; stools that are difficult or painful to pass; or a feeling that not all stool has passed. You usually can take steps to prevent or relieve constipation.”

Well then, what’s severe constipation? A new site for me, HealthCCM at https://health.ccm.net/faq/267-acute-constipation defines severe or acute constipation as,

“Acute constipation is usually defined by a slowing of intestinal transit generating a decrease in bowel movements and the appearance of dehydration. The person will have difficulty defecating or may not be able to at all.”

This sounds downright painful, so let’s go back to my original query about how constipation and CKD relate to each other.

But first I want to share this very clear explanation of how constipation happens from Everyday Health at https://www.everydayhealth.com/constipation/guide/.

“The GI tract, which consists of a series of hollow organs stretching from your mouth to your anus, is responsible for digestion, nutrient absorption, and waste removal.

In your lower GI tract, your large intestine, or bowel — which includes your colon and rectum — absorbs water from your digested food, changing it from a liquid to a solid (stool).

Constipation occurs when digested food spends too much time in your colon.

Your colon absorbs too much water, making your stool hard and dry — and difficult for your rectal muscles to push out of your body.”

Keep in mind that diabetes is the number one cause of CKD as you read this. According to the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/constipation/symptoms-causes/syc-20354253

“Hormones help balance fluids in your body. Diseases and conditions that upset the balance of hormones may lead to constipation, including:

  • Diabetes
  • Overactive parathyroid gland (hyperparathyroidism)
  • Pregnancy
  • Underactive thyroid (hypothyroidism)”

Many of the sites I perused suggested drinking more water to avoid or correct constipation. But we’re CKD patients; our fluid intake (Well, mine, anyway) is restricted. I’m already drinking my maximum of 64 ounces a day. In the words of Laurel and Hardy’s Hardy, “Well, here’s another nice mess you’ve gotten me into!” It’s possible constipation contributed to my developing CKD and drinking more may help, but with CKD you’re limited to how much you can drink.

Another suggestion I ran into on many sites was increase your fruit and vegetable intake. Great, just great. I’m already at my maximum of three different fruits and three different vegetables – each of different serving sizes, mind you – daily.

Wikipedia at https://en.wikipedia.org/wiki/Constipation#Medications has a great deal of information about constipation. Remember though that anyone can edit any Wikipedia article at any time. Be that as it may, this sentence leaped out at me:

“Metabolic and endocrine problems which may lead to constipation include: hypercalcemiahypothyroidismhyperparathyroidismporphyriachronic kidney diseasepan-hypopituitarismdiabetes mellitus, and cystic fibrosis….”

Thank you, MedicineNet for reminding us that iron can cause constipation. How many of us (meaning CKD patients) are on iron tablets due to the anemia that CKD may cause? I realize some patients are even taking injections of synthetic iron to help with red blood production, something the kidneys are charged with and slow down on when they are in decline.

Apparently, another gift of aging can be constipation since your metabolic system slows down. That’s also what makes it so hard to lose weight once you reach a certain weight. I’m getting a lot of information here, but I’m still not clear as to how one may cause the other. Let’s search some more.

I think I just hit something. We already know that diabetes is the number one cause of CKD. Did you remember that high blood pressure is the second most usual cause of CKD? Take a look at this from Health at https://www.health.com/health/gallery/0,,20452199,00.html#inflammatory-bowel-disease-3:

“Constipation can be a side effect of some common drugs used to treat high blood pressure, such as calcium channel blockers and diuretics.

Diuretics, for instance, lower blood pressure by increasing urine output, which flushes water from your system. However, water is needed to keep stools soft and get them out of the body.”

Now we’re getting somewhere.

It gets even better. The American Association of Kidney Patients at https://aakp.org/dialysis/relieving-constipation/ not only offered more clarification, but offered a list of high fiber foods without going over most of our potassium and phosphorous limits. Fiber intake is considered another way to both avoid and help with constipation.

“Adults need 20-35 grams of fiber daily. However, for dialysis patients who have to limit their fluid intake, this may be too much since it is thought increased dietary fiber may require an increased fluid intake. Also, all patients are different so the amount of fiber needed to relieve constipation varies from person to person.

High Fiber Foods

Bran muffin                 ½ muffin

Brown rice (cooked)   ½ cup

Broccoli*                    ½ cup

Peach                          1 medium

Prunes*                       3

Prunes*                       3

Spaghetti (cooked)      ½ cup

Turnips*                      ¾ cup

(Each serving contains about 150mg potassium, 20-90mg phosphorus and 1 – 5.4 grams of fiber.) (*Items contains 2 or more grams of fiber per serving.)”

I’ve got the connection between constipation and CKD now; do you?

Until next week,

Keep living your life!

Rising to the Challenge

Remember Loyal Reader from a few years ago? He and I are still in touch and toss around ideas here and there. He sent me an article about Chronic Kidney Disease patients being at higher risk for Hepatitis C along with the comment, “Hmmm, I wonder why?” I know a challenge when I see one, so let’s find out.

Back to basics: what is Hepatitis C anyway? As I mentioned in SlowItDownCKD 2013, Hepatitis is from the … Greek word root, hepa, which means liver.” Interesting, but not enough information for our purposes.

According to our old friend the MayoClinic at https://www.mayoclinic.org/diseases-conditions/hepatitis-c/symptoms-causes/syc-20354278,

“Hepatitis C is a viral infection that causes liver inflammation, sometimes leading to serious liver damage. The hepatitis C virus (HCV) spreads through contaminated blood.”

The National Kidney Foundation at https://www.kidney.org/sites/default/files/HepC_Infographic.pdf explained why hepatitis C is associated with Chronic Kidney Disease:

“Hepatitis C infection is strongly associated with kidney disease. Hepatitis C is more common in people with kidney disease than the general population. Hepatitis C can be a cause of kidney disease, or make existing kidney disease worse. People receiving a kidney transplant, or donating a kidney, are routinely tested for hepatitis C.

Hemodialysis and Hepatitis C People receiving long-term hemodialysis have a risk of getting hepatitis C through transmission in the dialysis clinic. The risk is small because of strict standard health precautions used in dialysis units today. However, some cases of hepatitis C being spread between patients have been reported.”

By the way, NKF uses infographs which are easy to understand.

In SlowItDownCKD 2017, I explained what KDIGO is. We’re going to need that explanation in just a moment.

“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.”

Here’s where KDIGO comes in. Way back in 2008, the following was published in the April issue of the official journal of the International Society of Nephrology, Kidney International, which supports the KDIGO:

“‘HCV infection is associated with an increased prevalence of reduced kidney function, albuminuria, and an increased risk of developing end stage renal disease,’ says Dr. Jaber, who is also vice chair for clinical affairs, Department of Medicine at Caritas St. Elizabeth’s Medical Center, ‘HCV infection is also associated with increased mortality among patients undergoing maintenance hemodialysis and among kidney transplant recipients.'”

But, in 2018, KDIGO updated their recommendations: “We recommend screening all patients for hepatitis C virus (HCV) infection at the time of initial evaluation of chronic kidney disease (CKD).”

Hmmm, as Loyal Reader would say, I wonder if this has something to do with the albuminuria Dr. Jaber mentioned in 2008.

Let’s see what we can find out. I found this in SlowItDownCKD 2015:

“Albumin is a protein.  It will show up as microalbumin in your urine test.  It may also show up as proteinuria since albumin is a protein.”

We can figure out that microalbumin is extremely small particles of albumin, but what about proteinuria? I went back, back, back to my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition:

“Protein in the urine, not a normal state of being.”

Does anyone else feel like we’re going down the rabbit hole here? Of course it’s not normal! It means we have CKD. Now, if there’s any amount   of protein in our urine… and there may be since we do have Chronic Kidney Disease… it looks like Hepatitis C Virus can raise that amount and lower our GFR. Not good, not good at all.

So what do we do about it? WebMD at https://www.webmd.com/hepatitis/digestive-diseases-hepatitis-c#2 held the least medicalese answer about the drugs that all the sites I viewed saw as the best treatment plan:

“Your treatment will depend on many things including what type of hepatitis C virus you have. In the U.S., the most common type is genotype 1, followed by genotypes 2 and 3. Genotypes 4, 5, and 6 are very rare in the U.S. Your doctor will help you figure out what’s right for you, based on your medical needs and insurance coverage. “

I know. I had the same question. What is a genotype? Hello, Dictionary.com, my old friend, at https://www.dictionary.com/browse/genotype.

“the genetic makeup of an organism or group of organisms with reference to a single trait, set of traits, or an entire complex of traits.”

Well, that makes sense. Just one more thing, though. Is it possible to know we have Hepatitis C before we’re diagnosed with CKD – at which time we should be tested for HCV – or even if we don’t have CKD? That is a loaded question. According to the Centers for Disease Control (CDC), fully 80% of those with acute or short term HCV won’t have any symbols. The other 20% may experience mild symptoms you might experience with any illness: fever, joint pain, being tired and/or nauseous, and the like. However with chronic or long term HCV, you might experience dark urine and/or jaundice of the skin and eyeballs. To complicate matters even more, there are three different kinds of hepatitis. You can read much more about hepatitis at https://www.cdc.gov/hepatitis/hcv/cfaq.htm

There’s one thing that I haven’t yet made clear. Your body rids itself of wastes and excess fluids through either the kidneys or the liver. If you have CKD, your kidneys are already not functioning as well as they should which means you’re not getting rid of either wastes or excess fluids efficiently. Guess what. One of the functions of the liver is to also clean your blood. Having two organs that are not effectively cleansing your blood is not a position you want to be in… ever.

This was a difficult blog to write. There were so many little pieces to link together. But thanks for the challenge, Loyal Reader, I learned a lot.

Switching topics now. Since the weather has been,uh, difficult lately (to say the least), I thought this might be helpful.  Use this link rather than clicking below: https://ecs.page.link/SVpB 

Until next week,

 

Keep living your life!

Dialysis is Now Old Enough to Have Its Own Museum

You know kidney disease advocates sort of bond together, right? I somehow magically ran across Steve Weed, a two time transplant recipient who has his own web development company that specializes in social media planning: Landau Digital Solutions. Actually, he unwittingly led me to the publisher of my first book: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease before I even knew what he did for a living. But I digress.

While recovering from his recent transplant, Steve posted about visiting a dialysis museum. I found myself mystified that such a thing existed. Wasn’t dialysis only about fifty years old? Who had a museum about such a young invention?

Then I realized that I had never written about the history of dialysis. Maybe it was older. So I did a little digging for us. Will you look at that! The idea of dialysis is much older than I’d thought. This is from Renal Med at http://www.renalmed.co.uk/history-of/haemodialysis:

“Scottish chemist Thomas Graham, known as the ‘father of dialysis’, first described dialysis in 1854. He used osmosis to separate dissolved substances and remove water through semi-permeable membranes, although he did not apply the method to medicine

He worked as a chemist in Glasgow University at around the same time as physician Richard Bright was describing the clinical features and diagnosis of renal failure in Edinburgh. He noticed that crystalloids were able to diffuse through vegetable parchment coated with albumin (which acted as a semi-permeable membrane). He called this ‘dialysis’. Using this method he was able to extract urea from urine. Graham prepared a bell-shaped vessel….”­

This was the seed that later became hemodialysis, which is defined by MedlinePlus (part of the U.S. National Library of Medicine) at https://medlineplus.gov/dialysis.html in the following way:

“Hemodialysis uses a machine. It is sometimes called an artificial kidney. You usually go to a special clinic for treatments several times a week.”

The difference in spelling is due to the variations between British English and American English.

Another step in dialysis becoming dialysis as we know it today is:

“The first human hemodialysis was performed in a uremic patient by (Me: His given name is Georg.) Haas in 1924 at the University of Giessen in Germany…. He used a tubular device made of collodion immersed in dialysate solution in a glass cylinder. Haas was able to calculate that the total non-protein nitrogen removed was 2,772 g. He also showed that the presence of some uremic substances in the dialysate and that water could be removed from the blood. In 1928, he first used the anticoagulant, heparin. In 1937, the first flat hemodialysis membrane made of cellophane was produced, which is produced in similar manner to cellulose, but dissolved in alkali and carbon disulfide…. The resulting solution is then extruded through a slit and washed multiple times to obtain a transparent semipermeable material.”

I found the information on the Advanced Renal Education Program site at https://www.advancedrenaleducation.com/content/history-hemodialysis.

Then, finally, dialysis as we know it. DPC Education Center (Dialysis Patient Citizens) at http://www.dpcedcenter.org/brief-history-dialysis provided this information.

“The history of dialysis dates back to the 1940s. (Me here again: although we know the seeds for the dialysis were planted much earlier.) The first type of dialyzer, then called the artificial kidney, was built in 1943 by Dutch physician Willem Kolff. Kolff had first gotten the idea of developing a machine to clean the blood after watching a patient suffer from kidney failure. When his invention was completed, he attempted to treat over a dozen patients with acute kidney failure over the next two years. Although only one treatment turned out successful, he continued to experiment in improving his design.”

The sources use many words you may not be familiar with. IvyRoses at http://www.ivyroses.com/HumanBody/Urinary/Urinary_System_Kidney_Dialysis.php was able to help us out here.

Parts of a Kidney Dialysis Machine

Dialysis Membrane (sometimes referred to as simply a ‘dialyser’)
Note that there are two types of artificial kidney dialysis in clinical use: Hemodialysis uses a cellulose-membrane tube immersed in fluid, whereas peritoneal dialysis uses the lining of the patient’s abdominal cavity (peritoneum), as a dialysis membrane. This section … only describes the case of hemodialysis.
The “dialyser” part of a kidney dialysis machine consists of a large surface area of cellulose acetate membrane mechanically supported by a plastic structure. Blood is pumped past one side of this membrane while the dialysate fluid passes on the other side. The membrane may be folded-over many times so that the large area of the membrane occupies a practical volume of space.

Dialysate
The dialysate (solution) has the same solute concentrations as those in ordinary plasma. Therefore if the patient’s blood plasma contains excess concentrations of any solutes, these will move into the dialysate, and if the blood plasma lacks the ideal concentration of any solutes, these will move into the patient’s blood. Conversely, the dialysate fluid does not contain any waste products such as urea – so these substances in the patient’s blood move down the concentration gradient into the dialysate.

Anticoagulant
Heparin is the usual anticoagulant that is added to the patient’s blood as it enters the dialysis machine (in order to prevent the blood from clotting as it passes through the machine). Preventing the blood from clotting should, in turn, prevent any blood clots from blocking the filtration surface of the system. However, heparin is not added during the final hour of dialysis in order to enable the patient’s blood clotting activity to return to normal before he or she leaves.”

Finally, I went to the museum site itself for more information. You can find their site at https://www.nwkidney.org/about-us/dialysis-museum/. This important piece of information showed up there.

“It was 1960 when Dr. Belding Scribner and his colleagues at University of Washington developed the Scribner shunt, a device made of Teflon that could link an artery and a vein. This relatively simple device was revolutionary – it made long-term dialysis possible for the first time. Chronic kidney failure was no longer a death sentence.”

So now I know… and so do you. If I ever get out to Seattle again, this museum is on my list of places to visit.

Before I go, The American Kidney Fund asked me to let you know about two webinars this month, both on topics close to my heart… I mean my kidneys. They are Slowing down kidney disease on September 20th and Tips for talking with your doctor on Sept. 25th. Why not mark these on your calendar now while you’re thinking of it?

Until next week,

Keep living your life!

So That’s How It’s Done

Readers have asked me repeatedly how foundations to raise awareness of kidney disease are started. You know my story: I developed Chronic Kidney Disease, didn’t understand what my nephrologist was saying so researched the disease, then decided to share my research with others who needs plain talk or reader friendly explanations. Hello, books, the blog, Facebook, Instagram, Twitter, Pinterest, Google Plus, LinkedIn, and my website. But I’m not a foundation; I’m just me doing what I can.

Back to the original question: How do foundations begin? Let’s keep in mind that we’re not talking about the biggies like the National Kidney Foundation here.

Well, remember the AAKP Conference back in June that I keep referring to? You meet a lot of people there. One fellow I met is Scott Burton who started his own kidney awareness foundation. I put the question to him. Ready? Here’s his answer.

How do you sum up 36 years of a constant back and forth struggle? Of a lifetime searching for a reason as hope fades a little more each day? How do you not get sick on this roller coaster called life? Simple answer, you don’t have a choice, so you push forward and try to find some positive in the negative, some hope in the hopeless and, ultimately, just try to live each day a little better than the last and make a positive impact. See, this isn’t a story with a fairytale happy ending, but most stories worth reading (or watching), don’t have fairytale endings; rather, they are stories that are relatable and sometimes left open ended.

This isn’t a guest blog about me or my battle, but rather one introducing the positive that has come from the negatives. That positive comes in the form of The Forever is Tomorrow Foundation which pulls from my background in marketing and video production. It just made sense to try to raise awareness and shed some light on kidney disease in the best way I know how: with real people telling real stories about real experiences in a casual and comfortable format.

That began the journey to today, a journey that began on March 3rd, 2016, when The Forever is Tomorrow Foundation was officially launched. The foundation is committed to raising awareness and shedding light on kidney disease through the creation of video content distributed via the web and social media. With many hopes and plans for the future, we are pushing forward as time and funds are available to create new content and keep things moving.

What I envisioned when setting out and establishing The Forever is Tomorrow Foundation was a resource of media content to both shed light on kidney disease to the general public  – which usually doesn’t give their kidneys a second thought – as well as creating a place for patients to find a little bit of comfort with their own battles. By telling patients’ stories, highlighting struggles and accomplishments, and also highlighting research in the field, we can create a place of inspiration and hope. While we have several video series at various stages of development in the works, our primary focus right now is ramping up our mini-documentary web series as funding allows.

We launched with two Public Service Announcements that went live in May of 2016. These two were centered around the National Kidney Foundation’s statistic, “13 people die every day waiting for a kidney transplant,” with a combined viewership of just over 30,000 views on Facebook & YouTube.

In March of 2017, we launched the first episode of “This is Kidney Disease… This is Life,” which is a web mini-documentary series of patients telling their stories in their own words. To date, four episodes of “This is Kidney Disease… This is Life” have been posted online, with just under 50,000 views spread across Facebook and YouTube.

In the coming months, we will also be releasing the first three episodes of a companion to the patient series, telling living donor stories with more episodes of “This is Kidney Disease… This is Life” to follow later this year. Additionally, we released the first video of what will grow to a regular series highlighting research focused on University of California, San Francisco, & The Kidney Project.

That’s the basic plan and history of The Forever is Tomorrow Foundation, with lots of projects in the works and plans to continue to grow. Everything comes down to funding and continuing to grow our network. We are constantly looking for new patients to highlight in our videos, and building a database of contact info for future episodes. To view our videos and learn more about the organization, follow us on Facebook (www.facebook.com/foreveristomorrowfoundation) & subscribe on YouTube (www.youtube.com/c/TheForeverisTomorrowFoundation).

Thank you, Scott, for explaining the inside workings of starting a foundation to raise awareness for kidney disease. Here’s hoping we get a bunch of readers commenting to tell us they borrowed from your structure to begin such foundations of their own and/or are interested in sharing their stories with  you. Note: The Facebook page has some of the most interesting information on kidney innovations that I’ve read about. Take a look for yourself.

On another note, KidneyX is looking for our input. This is from the email they sent me:

“We seek your feedback on how the KidneyX project can best spur innovation in preventing, diagnosing, and/or treating kidney diseases. While we encourage all relevant comments, we are interested particularly in responses to the following questions. You may respond to some or all of the questions:

  1. What unmet needs – including those related to product development—should KidneyX prize competitions focus on? If you have ideas for more than one topic area/issue, how would you rank them in order of importance? If you are a person living with a kidney disease, what makes these topic areas for product development important?
  2. What assistance or services might HHS and ASN offer to KidneyX prize winners that would encourage the greatest participation from a broad range of innovators?
  3. In what ways might HHS and ASN, through KidneyX, effectively encourage collaboration or cooperation between participants/prize winners while respecting their intellectual property rights?
  4. Particularly for those interested in participating in a KidneyX prize competition but unfamiliar with kidney functions and diseases, what information would you find it most useful for HHS and ASN to share publicly?”

You can submit your comments using the title “KidneyX Project Comment” by their September 14 deadline at:

E-Mail: please send responses to KidneyX@hhs.gov.

Mail: please send mail to
KidneyX c/o Ross Bowling
200 Independence Avenue SW, Room 624D
Washington, D.C., 20201

You don’t need to be a kidney patient to respond; you can also be an innovator.

This is, without a doubt, the most businessish (Love the writer’s license to initiate new words, don’t you?) blog I have posted to date. I hope it was both helpful and interesting to you.

Until next week,

Keep living your life!

Not That Kind of Trial

I enjoy reading murder mysteries and thrillers, especially Victorian era ones like the work of Anne Perry.  Sometimes they include –  or even start with – the trial and work their way backwards to the crime. The trial. That got me to thinking about a different kind of trial: clinical trials. How did they begin? What are they? WHY are they?

According to the National Institutes of Health (part of the U.S. Department of Health and Human Services) at https://www.nhlbi.nih.gov/studies/clinicaltrials/:

“Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. These studies also may show which medical approaches work best for certain illnesses or groups of people. Clinical trials produce the best data available for health care decision making.

The purpose of clinical trials is research, so the studies follow strict scientific standards. These standards protect patients and help produce reliable study results.

Clinical trials are one of the final stages of a long and careful research process. The process often begins in a laboratory (lab), where scientists first develop and test new ideas.

If an approach seems promising, the next step may involve animal testing. This shows how the approach affects a living body and whether it’s harmful. However, an approach that works well in the lab or animals doesn’t always work well in people. Thus, research in humans is needed.

For safety purposes, clinical trials start with small groups of patients to find out whether a new approach causes any harm. In later phases of clinical trials, researchers learn more about the new approach’s risks and benefits.

A clinical trial may find that a new strategy, treatment, or device
• improves patient outcomes;
• offers no benefit; or
• causes unexpected harm

All of these results are important because they advance medical knowledge and help improve patient care.”

That seemed to answer my last question, too, since their purpose is safely test new drugs or therapies.

Are these something recent? Something developed since the Federal Drug Administration (FDA) was instituted? No, they are far, far older. This is from Dr. Arun Bhatt’s Evolution of Clinical Research: A History Before and Beyond James Lind, which you can find at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3149409/. I found it fascinating.

“The world’s first clinical trial is recorded in the ‘Book of Daniel’ in The Bible…. This experiment resembling a clinical trial was not conducted by a medical, but by King Nebuchadnezzar a resourceful military leader…. During his rule in Babylon, Nebuchadnezzar ordered his people to eat only meat and drink only wine, a diet he believed would keep them in sound physical condition…. But several young men of royal blood, who preferred to eat vegetables, objected. The king allowed these rebels to follow a diet of legumes and water — but only for 10 days. When Nebuchadnezzar’s experiment ended, the vegetarians appeared better nourished than the meat-eaters, so the king permitted the legume lovers to continue their diet…. This probably was the one of the first times in evolution of human species that an open uncontrolled human experiment guided a decision about public health.”

Well, then, who is this James Lind mentioned in the title of Dr. Bhatt’s paper? I turned to England’s The Museum: Brought to Life at http://broughttolife.sciencemuseum.org.uk/broughttolife/people/jameslind for the answer:

“The Scottish surgeon James Lind was born in Edinburgh and served an apprenticeship at the Edinburgh College of Surgeons. He then worked as a ship’s surgeon until he opened his own practice in Edinburgh in 1748. Lind discovered the use of citrus fruit as a cure for scurvy when he conducted an early clinical trial. While working as a naval surgeon, Lind encountered cases of scurvy, a disease which often struck sailors on long voyages. The cause, a lack of essential vitamins, was unknown at the time. Earlier doctors had suggested that fresh fruit could be used to treat scurvy, but Lind was the first to test the effects of different diets systematically on a group of patients in a clinical trial. In 1754 he began to feed 12 scurvy patients different foods and found that patients eating citrus fruits such as lemons and oranges recovered much faster than those who were given other kinds of food.”

And now? Why are clinical trials important to us as kidney patients? In this year’s May 21st blog (Use the topic dropdown to the right of the blog itself; it’s easier than scrolling through all the blogs.), I wrote about the benefits of All of Us Research Project. The following is from that blog.

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.”

KidneyX is also involved. On June 24th (Use the topic dropdown again.), I included their principles in the blog.

Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

‘We test and validate solutions to solve challenging problems in the delivery of health and human services.’”

I know, I know. Now you want to know where you can join clinical trials. How about Antidote? You can go to their website at https://antidote.me/match/search/questions/1?utm_campaign=unisearch&utm_source=slowitdownckd_com&utm_medium=ctsearch&utm_content=no_js or use the widget to the bottom right of the blog. If you’d like a bit more information, I wrote about them on Oct. 7th, 2017 (Use the month dropdown if you’d like to read that blog.)

I could go on and on, but I think you get the idea… and I’ve run out of space.

Until next week,

Keep living your life!

The Third Kidney

Here I am back from the semiannual vacation with my husband, brother, and sister-in-law. It was sad to realize this was our last cruise, but some of our bodies just can’t handle that anymore. It looks like mine may be one of them since I’m in bed feeling not so great. How was I ever going to be able to write a blog for Monday, I wondered.

And then I remembered that I’d met someone with an idea so old that it’s new again and he’d promised a guest blog for this week.  And there it was, right in my mailbox. I’d met Raymond Keller, Jr. DO at the American Association of Kidney Patients I attended recently. He had an intriguing idea, one I thought should be shared with you.

Take it away, Raymond…

First and foremost, please do not consider any of the following as medical advice. Consult your doctor before making any changes to your medical treatment plan.

I’m not the first person to suggest the skin as a “Third Kidney,” but like many others I did independently conceive the idea. For the origin story you can read a recent interview done by the American Association of Kidney Patients. The premise of the Third Kidney is that skin, through the sweat glands, can excrete water, potassium, and urea in amounts that would be clinically useful to patients with chronic kidney disease especially those on dialysis. Before we get into the Third Kidney, let’s take a brief look into the history of dialysis itself.

Willem Johan Kolff is credited with being the inventor of dialysis. He pieced together things that could be found in a contemporary house to create the first dialyzer. The original dialysis membrane was a sausage casing. Crude, but effective. Belding Hibbard Scribner would come to create the “Scribner shunt” which allowed repeated use of the same vascular access. Once long term vascular access was obtained, long term hemodialysis became a reality.

Now let’s get down to the details about how sweating can help dialysis patients. While there are many potential compounds that can build in the body with renal failure, urea, water, and potassium are of particular importance. Let’s take a moment to explore the consequences of each and how sweat therapy can help.

Water is essential to life. So essential, we search for evidence of it on other planets to decide whether life could exist. To most dialysis patients water is a constant enemy. It is the reason they have to spend more than two hours on dialysis per day – to reach their dry weight. The evidence for keeping fluid off is part of the reason why people that do dialysis more than 3 days a week have better outcomes.

As anyone who lives between the Arctic and Antarctic Circle has likely experienced, sweating removes water from your body. Sweating is so interrelated with being human that almost every culture in human history has a tradition of inducing it. The Finns are perhaps the most well-known with their saunas. The Russians have banas, the Turks have hammams, and the Native Americans have sweat lodges. While everyone is different, it is not unreasonable to expect that a 45 minute sauna session could remove between 500-1000mL of fluid from the body. Higher losses are possible with training. To put that into context, a 4 hour dialysis session typically removes 2000mL and removing more than 400mL per hour can cause symptoms of hypotension. Sweating out fluid is a natural process, which is why it can reduce the ultrafiltration required.

In the table 1 below (adapted from https://www.homedialysis.org/life-at-home/articles/fluid-and-solute-removal-part-two) it is very obvious how likely it is for people to develop symptoms from removing fluid from the blood stream rather than the skin. This is especially important when we consider that the skin is where most excess fluid is stored, which is why dialysis patients get puffy.

Now on to potassium. Even though it is a vital nutrient, it has a dark side. Potassium chloride is one of the typically used compounds in lethal injections because it causes the heart to stop beating. As it builds up in the blood of a patient with renal failure it can have the same effect. Similar to fluid overload, keeping potassium levels at an appropriate level are a major reason daily dialysis patients do better than thrice weekly patients. Fortunately, potassium is excreted in sweat at 2-3 times the level it is found in the blood stream. During a regular sauna session the clinically relevant amount of potassium, in upwards of 4.6 grams, can be removed from the body.

And urea? Urea is a controversial molecule is the dialysis community, yet a relatively simple molecule that our bodies use to detoxify ammonia and remove nitrogenous waste from our bodies. We used to think that it freely diffused across cell membranes, like water. But seminal work by my mentor Jeff Sands, MD showed that there are molecular transporters for urea. In the dialysis community, urea rebound is proof that urea is not freely diffusible.

There has been much debate about the toxicity of urea. Regardless of whether urea is toxic, and at what levels it is, blood urea nitrogen is one way we monitor the adequacy of dialysis. Urea is excreted in sweat at about 2-3 times its presence in serum. Understanding how sweat affects the blood urea nitrogen levels will be important in coordinating the combination of sweat therapies with dialysis.

How does all of this relate to SlowItDownCKD? There is value to researching whether sweat based therapies like sauna can be used to reduce the dependence on dialysis. Given the above facts it is useful to ask the question of whether sweat based therapies can reduce the number of days per week or number of hours per day of dialysis. There is also the potential for sweat based therapies to push off dialysis for patients with CKD. Third Kidney currently has IRB (institutional review board, also known as an independent ethics committee) approval to do safety trials with Harvard Medical School professors. After a safety trial, the next step would be a study in patients that have chronic kidney disease.

When it comes to sweat based therapies for CKD I’ll leave you with a few thoughts:

  1. No rational person would say that sweating vis-a-vis exercise is a bad idea for CKD patients.
  2. If fluid balance was better achieved by sweating hours, or even days of dialysis, might be avoided.
  3. If potassium is lost in sweat it would allow people to liberalize their potassium intake, opening up a culinary panoply.

If you are interested in learning more about how sweat based therapies may be beneficial in patients with chronic kidney disease and the research that Third Kidney is doing, you can visit us at ThirdKidney.net.

Wow! Just wow. This is – as we used to say in college decades ago – mind blowing. It’s so simple, yet so complex. With many thanks for this new/old information, I’ll say good bye for now.

Until next week,

Keep living your life!

Help When You Need It

One of the many people I met at the AAKP Conference who opened my eyes to things I’d never even though of before is Samantha Siegner from the Chronic Disease Coalition. We hit it off right away and I felt comfortable exposing my ignorance to her. Once she explained what the coalition does, I wanted all my readers to know about it. Happily for us, Samatha agreed to write a guest blog for us.

*****

Nearly half of all adults in the United States have one or more chronic health conditions, and the number continues to climb. By 2020, it is projected that over 157 million Americans will battle a chronic disease. While some chronic conditions can be prevented, others are inherited, or may develop as a result of numerous factors. Despite the prevalence of chronic disease, few organizations are specifically dedicated to addressing the needs of patients who battle all types of chronic conditions rather than a single disease.

The Chronic Disease Coalition (CDC) is national nonprofit organization that represents people battling a wide range of chronic conditions, including kidney disease, diabetes, arthritis, multiple sclerosis and more. As patients dealing with kidney disease or other chronic conditions know, it can be difficult to work, attend school or even get adequate health insurance coverage. Our organization works to not only raise awareness and educate the public about chronic conditions, but also to advocate for patients who need better access to care. Our mission is focused on exposing and addressing discriminatory practices and policies that are preventing patients from accessing necessary, often lifesaving care.

Discrimination based on a person having a chronic disease comes in various forms, but we most frequently see it occur in the school, workplace and with health insurance plans.

  1. School: For those looking to complete high school or even college, it can be difficult to regularly attend class or have the energy to complete assignments. For kidney patients, dialysis poses difficulty attending class, as you may be required to dialyze for several hours multiple times a week. It is important to educate yourself on the services offered by the school to ensure that you are receiving reasonable accommodation that support your effort to pursue education.

Our organization works with people to ensure that they are being treated fairly in the school system, read more in one patient’s story here.

  1. Workplace: Many people with chronic conditions may frequently visit the doctor’s office for treatment, response to a flare up or check-ups to ensure that their condition is being managed properly – these actions can require additional time off work. While it is not legal for an employer to ask about your medical history, some patients may disclose it. This can lead to a greater understanding and development of a process for how you miss work, but for others, it may lead to losing their job or being demoted.

The CDC helps patients by supporting legislation that protects the privacy of employee’s medical history and ensures that businesses and corporations cannot discriminate based on their health status. Additionally, we ensure that patients are educated on their rights within the workplace.

  1. Insurance: Unfortunately, insurance discrimination is all too common. Insurers institute a variety of practices to increase their bottom line at the expense of the patients, without consideration for the long-term health consequences. Some of the most common practices include, step-therapy or fail-first, lengthy prior authorization approval times, nonmedical switching and bans on charitable premium and copay assistance, which is a common way for insurers to target kidney patients.

Right now, insurers across the nation are targeting chronic disease patients who rely on charitable premium assistance to help afford the cost of their health care. By utilizing a loophole within a 2014 guideline issued by the Centers for Medicare and Medicaid Services, insurers are denying premium and copay payments made by charities, like the American Kidney Fund, on behalf of patients. As a result, patients are forced off their current health plan and left to find other options. This is a commonly used tactic to force patients off of private health plans and onto public plans, because the insurer doesn’t want to cover chronic disease patients that require expensive, regular treatment, like dialysis. While kidney patients are eligible for Medicare before the age of 65, a public plan may not meet their needs or cover services that can help a patient become eligible for a transplant.

The Chronic Disease Coalition is actively working to pass H.R. 3976, the Access to Marketplace Insurance Act to ensure that patients can access charitable premium assistance and choose the health plan that best meets their needs.

So how does the Chronic Disease Coalition work with kidney patients? In addition to advocating on behalf and beside kidney patients to ensure discriminatory policies don’t hinder their ability to access care, we work with patients in their communities to raise awareness and educate the public on kidney disease at an individual level and through our Ambassador Program.

After receiving an initial diagnosis, many people with kidney failure may not know what to expect from treatment, what questions they should ask their medical team and what changes may come to their daily life. Our Ambassador Program was developed on this understanding and is comprised of active advocates who battle chronic diseases and provide guidance, advice and advocate on issues that concern kidney patients. Ambassadors complete advocacy work that is relevant to their specific diseases and communities each month.

If you are interested in learning more about the CDC and how you may be able to become involved, please click here. Change happens when people speak out, share their stories and take action – the CDC is proud to provide a platform for kidney patients and all people with chronic conditions to do so.

*****

Did you click through on all the blue words? I did. I’d had inklings of what each of these meant, but the full explanation made my understanding so much better. All I can say is: Thank you!

SlowItDownCKD 2014 should be out on Amazon.com any day now. B & N takes a few weeks longer. This had formerly been the second half of the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I’d vowed to separate both this book and the equally unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 into two books each… and now I have. Of course, that leaves me with desk copies of each of the Book of Blogs which I no longer need. Want one? Let me know (but only if you haven’t received a free book from SlowItDownCKD before).

Until next week,

Keep living your life!

 

No Longer an Actor, Now I’m a Reviewer (Of Sorts)

Last month I received an email from Screen Media asking if I’d like to preview Chicken Soup for the Soul’s One Last Thing. It stars two actors I know about, “…Wendell Pierce (TV’s The Wire) and Jurnee Smollett-Bell (TV’s Underground) and is primarily set in Brooklyn.” Hmmm, two appealing actors AND it was set in Brooklyn. I still wasn’t sure so I emailed back asking if SlowItDownCKD was the intended recipient for this email. Once assured it was, I agreed. Hey, I’m always up for an adventure.

When I saw the movie, I understood. One story line in the movie deals with a kidney dysplasia patient’s need for a donor. That’s all I’ll say about the movie so I don’t ruin the story for you. In other words, you’ll get no spoiler alerts from me.

In addition to crying at the most poignant parts of the movie, my brain was working overtime. Granted the character suffered from a rare kidney disease, but so rare that I’d never heard of it? You can tell what’s coming, can’t you? If I hadn’t heard of it, have my readers? And that’s what I’ll be writing about today.

Okay now, let’s see what this rare kidney disease is. It made sense to me to go to one of the tried and true websites I usually go to for information. This is what The National Institute of Diabetes, Digestive, and Kidney Diseases, a part of the U.S. Department of Health and Human Services, at https://www.niddk.nih.gov/health-information/kidney-disease/children/kidney-dysplasia had to offer:

“Kidney dysplasia is a condition in which the internal structures of one or both of a fetus’ kidneys do not develop normally while in the womb. During normal development, two thin tubes of muscle called ureters grow into the kidneys and branch out to form a network of tiny structures called tubules. The tubules collect urine as the fetus grows in the womb. In kidney dysplasia, the tubules fail to branch out completely. Urine that would normally flow through the tubules has nowhere to go. Urine collects inside the affected kidney and forms fluid-filled sacs called cysts. The cysts replace normal kidney tissue and prevent the kidney from functioning.

Kidney dysplasia can affect one kidney or both kidneys. Babies with severe kidney dysplasia affecting both kidneys generally do not survive birth. Those who do survive may need the following early in life:

  • blood-filtering treatments called dialysis
  • a kidney transplant

Children with dysplasia in only one kidney have normal kidney function if the other kidney is unaffected. Those with mild dysplasia of both kidneys may not need dialysis or a kidney transplant for several years.

Kidney dysplasia is also called renal dysplasia or multicystic dysplastic kidney.”

They also offered some clarifying diagrams.

So now we know what it is, but what causes it? I went to MedicineNet at https://www.medicinenet.com/kidney_dysplasia/article.htm#what_is_kidney_dysplasia for the answer to this question.

“Kidney dysplasia may be caused by the mother’s exposure to certain drugs or by genetic factors. Pregnant women should talk with their health care providers before taking any medicine during their pregnancy. Drugs that may cause kidney dysplasia include prescription medicines, such as drugs to treat seizures and blood pressure medicines called angiotensin-converting enzyme (ACE) inhibitors and angiotensin receptor blockers (ARBs). A mother’s use of illegal drugs-such as cocaine-can also cause kidney dysplasia in her unborn child.

Kidney dysplasia can also have genetic causes. The disorder appears to be an autosomal dominant trait, which means one parent may pass the trait to a child. When kidney dysplasia is discovered in a child, an ultrasound examination may reveal the condition in one of the parents.

Several genetic syndromes that affect other body systems may include kidney dysplasia as one part of the syndrome. A syndrome is a group of symptoms or conditions that may seem unrelated but are thought to have the same cause-usually a genetic cause. A baby with kidney dysplasia might also have problems of the digestive tract, nervous system, heart and blood vessels, muscles and skeleton, or other parts of the urinary tract.

A baby with kidney dysplasia might have other urinary problems that affect the normal kidney. On the left, urine is blocked from draining out of the kidney. On the right, urine flows backward from the bladder into the ureter and kidney, a condition called reflux.

(Me, here: You’ll be able to figure out which was the cause of Jurnee Smollett-Belle’s character once you see the movie.)

Problems of the urinary tract that lead to kidney dysplasia might also affect the normal kidney. For example, one urinary birth defect causes blockage at the point where urine normally drains from the kidney into the ureter. Another birth defect causes urine to flow from the bladder back up the ureter, sometimes all the way to the kidney. This condition is called reflux. Over time, if these problems are not corrected, they can damage the one working kidney and lead to total kidney failure.”

I’m thankful this is a rare disease, but wondered just how rare it was. Back to NIKKD at the same URL as before:

“Scientists estimate that kidney dysplasia affects about one in 4,000 babies…. This estimate may be low because some people with kidney dysplasia are never diagnosed with the condition.”

I’m not a numbers person, but that seems like a lot of babies.

Now, the biggie. What can be done before the need for dialysis or transplant rears its head? I went directly to Urology Care Foundation at http://www.urologyhealth.org/urologic-conditions/kidney-(renal)-dysplasia-and-cystic-disease/printable-version since the kidneys are part of your urologic system.

  • “Treatment may only include symptom management.
  • Monitoring should include blood pressure checks, kidney function tests, and urine testing for protein.
  • Periodic ultrasound can be used to make sure the other kidney continues to grow normally and no other problems develop.
  • Antibiotics may be needed for urinary tract infections.
  • The kidney should be removed only if it causes pain or high blood pressure, or ultrasound is abnormal.”

The AAKP Conference I wrote about last week opened my eyes to how much I don’t know about other kidney diseases and those that might affect CKD. The result is that I’ve asked quite a few people and organizations to guest blog about those areas in which they are experts. Expect to see these guest blogs throughout the summer.

Until next week,

Keep living your life!

Coming Home

I’m not a joiner. I’ve never been one. That’s why I was so surprised that I joined the American Association of Kidney Patients… and even more surprised to find myself attending this year’s conference in Tampa Bay, Florida. Readers had been suggesting I do so for years, but I’m not a joiner. Let’s change that; I wasn’t a joiner. The AAKP conference made the difference.

What’s that you ask? Of course, you need to know what they are. This is from their website at https://aakp.org/,

THE INDEPENDENT VOICE OF KIDNEY PATIENTS SINCE 1969™

The American Association of Kidney Patients is dedicated to improving the quality of life for kidney patients through education, advocacy, patient engagement and the fostering of patient communities.

Education

The American Association of Kidney Patients (AAKP) is recognized as the leader for patient-centered education – continually developing high quality, professionally written, edited and reviewed educational pieces covering every level of kidney disease.

Advocacy

For nearly 50 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

Community

AAKP is leading the effort to bring kidney patients together to promote community, conversations and to seek out services that help maximize patients’ everyday lives.

An IRS registered, Sec. 501(C)(3) organization, AAKP is governed by a Board of Directors. The current board is comprised of dialysis patients, chronic kidney disease patients, [Me here: You did notice ‘chronic kidney disease patients,’ right?] transplant recipients, health care professionals and members of the public concerned with kidney disease. The board and membership are serviced by a staff of five employees under the direction of Diana Clynes, Interim Executive Director, at the AAKP National Office located in Tampa, Florida.”

What’s not mentioned here is that the organization was started by only six patients. I find that astounding, but I’ll let them explain their history:

Founded by Patients for Patients

King County Hospital, New York

The American Association of Kidney Patients (AAKP) has a rich history in patient advocacy and kidney disease education. AAKP started in 1969 with six dialysis patients at King County Hospital in Brooklyn, New York. They wanted to form an organization that would elevate the kidney patient voice in national health care arena, provide patients with educational resources to improve their lives and give kidney patients and their family members a sense of community. They met twice a week in the hospital ward and while hooked up to primitive dialysis machines for 12 to 18 hours at a time they brainstormed, researched and eventually formed AAKP.

The group originally called themselves NAPH (National Association of Patients on Hemodialysis, which later changed to AAKP). AAKP joined forces with other patient groups to fight for the enactment of the Medicare End-Stage Renal Disease (ESRD) Program, testifying before congressional committees, seeking public support and creating a newsletter (the forerunner of today’s AAKP RENALIFE) to keep everyone informed. This effort was crowned with success in 1972 when Congress enacted the program that continues to provide Medicare funding for dialysis and kidney transplantation.

After winning the initial and critical battle for the Medicare ESRD Program, AAKP turned its attention to other important issues — the need to establish a secure national organization to preserve the visibility and influence of patients with Congress and to develop national, educational and supportive programs.

Today & Beyond

AAKP has grown into a nationally recognized patient organization that reaches over 1 million people yearly. It remains dedicated to providing patients with the education and knowledge necessary to ensure quality of life and quality of health.”

This former non-joiner has found her association. I originally avoided the conferences because I thought they would be focused only on dialysis and transplant patients. Boy, was I ever wrong. Here are some of the outbreak (small group) sessions that dealt with other aspects of kidney disease:

Social Media (You’re right: I signed up for that one right away since I identify as a CKD awareness advocate.)

Dental Health

How Kidney Disease Impacts Family Members

Managing the Early Stage of CKD

Understanding Clinical Trials

Treatment Options

Staying Active

Veterans Administration

Caregiver’s Corner

Living Well with Kidney Disease

Avoid Infections

Of course, there were many outbreak sessions for dialysis and transplant patients as well. And there were two opportunities to lunch with experts. That’s where I tentatively learned about governmental aspects of our disease. There were opportunities to learn about nutrition, medications, working, and coping. I’ve just mentioned a few of the 50 different topics discussed.

The general sessions, the ones everyone attended, informed us of what the government’s national policy had to do with kidney disease, legislation, nutrition, patient centered care, and innovation in care (Keep an eye out for Third Kidney, Inc.’s August guest blog.).

I have not covered even half of what was offered during the conference. Did I mention renal friendly food was available and you could dialyze near the hotel if need be? The exhibitors went beyond friendly and explaining their products to being interested in who you were and why you were there. This was the most welcoming conference I’d been to in decades.

AAKP President Paul Conway summed up my feelings about the conference when he was interviewed by The Tampa Bay Times on the last day of the conference,

“This meeting is a way for us to bring patients together and educate them on trends that could affect their own health.”

I met so many others who have kidney disease and so many others who advocate for different types of kidney disease and patients’ rights. I was educated about so many areas, especially those I previously had known nothing about, for example, legislation. It was like coming home. Would I attend again? You bet’cha. Would I urge you to attend? At the risk of being redundant, you bet’cha.

I was so excited about AAKP that I almost didn’t leave myself enough space to tell you about yet another freebie. The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 is no longer in print since it has been divided into SlowItDownCKD 2011 and SlowItDownCKD 2012. But I still have a desk copy. Let me know if you’d like it. My only restriction is that you have not received a free book from me before.

Until next week,

Keep living your life!

Let Your Voice Be Heard

Someone on a Facebook Chronic Kidney Disease Support Group Page asked how we can make others more aware of what CKD patients want. I’ve been tweeting (exchanging remarks on Twitter) with those who could answer this question just recently. How perfect was that?

The first thing the American Society of Nephrology requested is that those of you who are familiar with Twitter, or are willing to become familiar with this social media, join the monthly #AskASN twitter chats. To join Twitter you simply go to Twitter.com and sign yourself up, no special expertise necessary. That pound sign, or as it’s commonly known now – hashtag, before the words signify that this is a person or group with a Twitter account. What comes after the hashtag is your handle, the name you choose for yourself. Mine is – naturally – #SlowItDownCKD. You can search for me on Twitter.

#AskASN is one of the hashtags of the American Society of Nephrology, the ASN which you’ve often seen me quote. Yes, they are respected. Yes, they are doctors. And, yes, they do want to know what we as kidney disease patients want them to know about our lives as their patients. Big hint: their next Twitter Chat will be in late July.

This year’s May 28th blog was about KidneyX, the same topic as June’s Twitter Chat. Here’s a little reminder of what KidneyX stands for:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

Did you notice that first principle: patient-centered? Or the fifth one: collaborative? We are included in that; we’re the patients.

IDEA Lab is one of the U.S. Department of Health and Human Services’ partners. This is how they define themselves:

“We test and validate solutions to solve challenging problems in the delivery of health and human services.”

And this is what they had to say during the KidneyX Twitter Chat:

HHS IDEA Lab‏Verified account @HHSIDEALabJun 19

Absolutely. Patients are innovators and we need to recognize that #askASN#KidneyX

Patients. They want to hear from us, patients.

Before reproducing a small part of the @AskASN KidneyX Twitter Chat, I want to introduce the players.

Kevin J. Fowler (@gratefull080504) is a patient who has had a preemptive kidney transplant and is highly involved in the patient voice being heard.

Tejas Patel (@GenNextMD) is a nephrologist with a large social media presence who advocates “for halting the progression of ckd so no dialysis or transplant [is necessary].”

James Myers (@kidneystories) is a fairly recent transplant with a strong advocacy for transplant patients.

I’m me; you already know me.

Now, the excerpt:

Thank you @GenNextMD Me too! #AskASNhttps://twitter.com/GenNextMD/status/1009245134964318209 …

Kevin J. Fowler added,

  • Tejas Patel @GenNextMD

Replying to @kidneystories

I am advocating for halting the progression of ckd so no dialysis or transplant #askasn #moonshot

Replying to @gratefull080504@GenNextMD

@GenNextMD That’s what those of us pre-dialysis want, too. The question is how do we do that? As a lay person, I’m at a loss here.

Replying to @Slowitdownckd@gratefull080504

Major undertaking by medical community, organizations (ASN, AAKP, NKF, RPA) and implementation of breakthrough therapies keeping patient central. Engaging all stakeholders will help prioritize what works for patients. Dialogue via formal & social media helps us understand better.

Replying to @GenNextMD@Slowitdownckd@gratefull080504

We recently had patient editorial in @CJASN by @gratefull080504 and interview https://www.kidneynews.org/kidney-news/features/patient-engagement … Lot of work needs to be done

I read the article. I think you should, too. Kevin makes the point that patient voices need to be heard and the nephrologist who was interviewed with him, Dr. Eleanor D. Lederer, agrees.

From reading my blog alone, you’re already familiar with the oft quoted American Society of Nephrology (ASN), American Association of Kidney Patients (AAKP) which was the subject of June 25th blog, and the National Kidney Foundation (NKF), a staple in the blog. But what is the RPA?

Let’s find out. It turns out that this is the Renal Physicians Association. Their website is at https://www.renalmd.org/. If you go there, you’ll notice four different choices. One of them is Advocacy. That’s the one I clicked. Keep in mind that this site is for physicians.

Become An Advocate for Excellence in Nephrology Practice

It is not only your right but also your obligation to let elected officials and policy makers know how you feel about important issues. It is your responsibility to speak out on matters that affect you directly or no one else will. RPA has developed pathways to allow you to do this.

Recognizing that nephrologists and their practice teams have limited time, an easy way to get involved in federal advocacy is by joining the RPA Political Action Committee (PAC) and Nephrology Coverage Advocacy Program (NCAP).

Take Action Nationally!

RPA’s Legislative Action Center (LAC) facilitates the important communication between RPA members and their members of Congress as well as representatives in their state legislatures. The LAC allows RPA members to track the progress of and search for all current legislation being considered by Congress.”

Our doctors are being asked to speak with the government on our behalf. But how will they know what we want or need, you ask. Easy enough: you tell them when you see them. You have regular appointments; that’s when you can talk with them about legislation you feel is necessary.

I never knew how much my opinion is wanted. I never knew how much YOUR opinion is wanted. Now we all know, so how about speaking out, raising your voice, and advocating for yourself. It’s not that scary if you start by just speaking with your doctor.  Although, I’ll be looking for you on ASN’s #askASN Twitter Chat in late July.

Until next week,

Keep living your life!

Sorry Spiderman, That was Webinars not Webshooters

So much has been going on in my world lately that it was hard to choose what to write about today. In addition to my family, there’s the experience of my first American Association of Kidney Patients Conference, PKD, KidneyX and the list goes on. It was hard to choose, that is, until the American Kidney Fund sent me the following information. They explain who they are, what they do, and why they hold their free monthly educational seminars. Good timing here since the next webinar is this Friday. I’ll let them take over for a while and write some more once they’re done.

Oh, wait. First we need to know what a webinar is. My favorite online dictionary, Merriam-Webster, at https://www.merriam-webster.com/dictionary/webinar defines this in the following way:

“a live online educational presentation during which participating viewers can submit questions and comments”

That means it’s real time; you have to be online to participate. Don’t worry if the time doesn’t work for you because AKF has former webinars on their websites. You just won’t be able to ask your own questions, although you will be able to hear the questions others have asked during the webinar and the answers they received. Okay, now we turn this section of the blog over to The American Kidney Fund.

“The American Kidney Fund (AKF) is a non-profit organization dedicated to helping people fight kidney disease and lead healthier lives.  Living with chronic kidney disease (CKD) or kidney failure is incredibly taxing, and can put strain on all elements of a person’s life. And although doctors are available for patients to ask questions about their disease, many kidney patients do not know what they should ask, and are left needing answers even after leaving a doctor’s appointment.

AKF believes every patient and caregiver has the right to understand what is going on with their health, or the health of their loved one, and how to best manage it. That is where we come in.

The American Kidney Fund hosts free, monthly, educational webinars meant for patients and caregivers. Each webinar explores a different topic relevant to living well with kidney disease. Since the webinar program’s launch in 2016, AKF has hosted over 27 webinars on many topics including nutrition, employment, insurance, transplant, exercise, heart disease, advocacy, pregnancy, mental health, and more.

Webinar speakers are carefully chosen based on their knowledge, and ability to connect with a patient audience. This ensures we deliver the highest quality of information in the best way. Some speakers are kidney patients or kidney donors themselves.  The webinars are delivered from a variety of perspectives so that the advice given is both relatable and reliable.

AKF aims to take complex topics and simplify the content without taking away from the quality of information.  In an effort to be inclusive of non-English speakers, AKF has hosted a webinar entirely in Spanish on preventing and treating kidney disease, and is in the process of translating even more webinars into Spanish.

One of the highlights of the American Kidney Fund webinars is the live Q&A session held during the last 15-20 minutes of each presentation, when the audience can ask their questions in real time and receive an immediate answer from our speaker. This creates a unique space for our attendees to interact anonymously with an expert in a judgement-free zone. We understand the time-demands of being a kidney patient or caregiver, which is why all our webinars, along with the PowerPoint slides, are also uploaded to the AKF website for on-demand viewing.

Our next webinar is on Friday, June 22 from 1-2pm (EST) and will discuss why phosphorus is an important nutrient for kidney patients to consider, and the best ways to manage phosphorus through diet and medicine.  Carolyn Feibig, the dietitian and speaker for this webinar is exceptionally knowledgeable and enthusiastic about her field. If you have questions about how to manage a CKD-friendly diet, this is your opportunity to learn more and to ask your questions.

After each webinar we ask for feedback and suggestions from our audience about future webinars.  We invite you to register now, and then share which topics you would like to hear about next. We hope you will use our webinars as a tool to live the healthiest life possible with kidney disease.

American Kidney Fund www.kidneyfund.org/webinars

I looked at some of their past webinar topics and was impressed with the variety.

My office is abuzz. SlowItDownCKD 2013, both digital and print, is available on Amazon. Give it a few weeks before it appears on B&N.com. I’m excited because I vowed to separate the unwieldy, small print, indexless The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 into two separate books with a SlowItDownCKD title, index, and larger print just as I’d done with The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 (which is no longer available since it is now SlowItDownCKD 2011 and SlowItDownCKD 2012). That’s half way done now, boys and girls… I mean readers.

Here’s something a bit unusual: I have a request from a reader who has the rare kidney disease Calyceal Diverticulum. Rather than asking me to write about it, she’s looking for others with the same disease. Do we have any readers here with this disease? If so, we could make the blog a safe place to connect. Or you could email me and I’d pass on your information to her. Alternately, with her permission, I could pass her information to you. I can understand her need to communicate with others with the same disease, so please do let me know if you’d like to communicate with her.

And last, but not least, and I have to admit brain fog has me here, so bear with me if you’ve read this before. In digging through the morass of my desk, (I have been traveling a lot lately.) I uncovered a beta copy of SlowItDownCKD 2017. That means it has all the content, but I didn’t like the formatting so I re-did it. Would you like it? If so, just be the first one to contact me to let me know. Oh, one restriction: only those who haven’t received a free book from me before, please. I’d like to share the CKD information with as many people as possible.

Until next week,

Keep living your life!

 

 

Last Week, The Country… This Week, The World

Last week, I wrote about a U.S. clinical trial program, AllofUs Research Program. This week we’re going global. Huh? What’s that, you ask. It’s KidneyX.

I can just feel you rolling your eyes. (Ask my children if you don’t think I can do that.)  Hold on a minute and I’ll let KidneyX explain what they are from their website at http://www.kidneyx.org.

“The Kidney Innovation Accelerator (KidneyX) is a public-private partnership to accelerate innovation in the prevention, diagnosis, and treatment of kidney diseases. KidneyX seeks to improve the lives of the 850 million people worldwide currently affected by kidney diseases by accelerating the development of drugs, devices, biologics and other therapies across the spectrum of kidney care including:

Prevention

Diagnostics

Treatment”

I know, I know. Now you want to know why you should be getting excited about this program you don’t know much about. Let’s put it this way. There hasn’t been all that much change in the treatment of kidney disease since it was recognized. When was that? This question was answered in SlowItDownCKD 2015:

“…nephrologist Veeraish Chauhan from his ‘A Brief History of the Field of Nephrology’ in which he emphasizes how young the field of modern nephrology is.

‘Dr. Smith was an American physician and physiologist who was almost singlehandedly responsible for our current understanding of how the kidneys work. He dominated the field of twentieth century Nephrology so much that it is called the “Smithian Era of Renal Physiology“ .He wrote the veritable modern Bible of Nephrology titled, The Kidney: Structure and Function in Health and Disease. This was only in 1951.”

1951?????? It looks like I’m older than the history of kidney disease treatment is. Of course, there were earlier attempts by other people (Let’s not forget Dr. Bright who discovered kidney disease in the early 1800s.) But treatment?

Hmmm, how did Dr. Smith treat kidney disease I wondered as I started writing about KidneyX.

Clinics in Mother and Child Health was helpful here. I turned to their “A Short History of Nephrology Up to the 20th Century” at https://www.omicsonline.org/open-access/a-short-historic-view-of-nephrology-upto-the-20th-century-2090-7214-1000195.php? and found this information:

“His NYU time has been called the Smithian Era of renal physiology for his monumental research clarifying glomerular filtration, tubular absorption, and secretion of solutes in renal physiology …. His work established the concept that the kidney worked according to principles of physiology both as a filter and also as a secretory organ. Twenty-first century clinical nephrology stems from his work and teaching on the awareness of normal and abnormal functioning of the kidney.”

I see, so first the physiology and function of the kidney had to be understood before the disease could be treated.

 

I thought I remembered sodium intake as part of the plan to treat CKD way before the Smithian Era. I was wrong. This is also from SlowItDownCKD 2015:

“With all our outcry about following a low sodium diet, it was a bit shocking to realize that when this was first suggested as a way to avoid edema in 1949, it was practically dismissed. It wasn’t until the 1970s that the importance of a low sodium diet in Chronic Kidney Disease was acknowledged.”

Aha! So one of our dietary restrictions wasn’t accepted until the 1970s. I was already teaching high school English by then. Things did seem to be moving slowly when it came to Chronic Kidney Disease treatment.

Let’s see if I can find something more recent. This, from the National Kidney Fund at https://www.kidney.org/professionals/guidelines/guidelines_commentaries sounds promising, but notice that this has only been around since 1997. That’s only 21 years ago. It has been updated several times, but there doesn’t seem to be that much difference… or maybe I just didn’t understand the differences.

“The National Kidney Foundation Kidney Disease Outcomes Quality Initiative (NKF KDOQI)™ has provided evidence-based clinical practice guidelines for all stages of chronic kidney disease (CKD) and related complications since 1997…. KDOQI also convenes a small work group of U.S. based experts to review relevant international guidelines and write commentary to help the U.S. audience better understand applicability in their local clinical environment.

Clinical Practice Guidelines are documents that present evidence-based recommendations to aid clinicians in the treatment of particular diseases or groups of patients. They are not intended to be mandates but tools to help physicians, patients, and caregivers make treatment decisions that are right for the individual. With all guidelines, clinicians should be aware that circumstances may appear that require straying from the published recommendations.”

Time to get back to KidneyX before I run out of room in today’s blog. Here’s more that will explain their purpose:

“Principles

  • Patient-Centered Ensure all product development is patient-centered
  • Urgent Create a sense of urgency to meet the needs of people with kidney diseases
  • Achievable Ground in scientifically-driven technology development
  • Catalytic Reduce regulatory and financial risks to catalyze investment in kidney space
  • Collaborative Foster multidisciplinary collaboration including innovators throughout science and technology, the business community, patients, care partners, and other stakeholders
  • Additive Address barriers to innovation public/private sectors do not otherwise
  • Sustainable Invest in a diverse portfolio to balance risk and sustain KidneyX”

This may explain why think tanks for kidney patients, all types of kidney patients, are beginning to become more prevalent.

Let’s go back to the website for more information. This is how they plan to succeed:

“Building off the success of similar public-private accelerators, KidneyX will engage a community of researchers, innovators, and investors to bring breakthrough therapies to patients by:

Development

Driving patient access to disruptive technologies via competitive, non-dilutive funding to innovators.

Coordination

Providing a clearer and less expensive path to bringing products to patients and their families.

Urgency

Creating a sense of urgency by spotlighting the immediate needs of patients and their families.”

One word jumped out at me: urgency. I am being treated for my CKD the same way CKD patients have been treated for decades…and decades. It’s time for a change.

One thing that doesn’t change is that we celebrate Memorial Day in the U.S. every year. And every year, I honor those who have died to protect my freedom and thank my lucky stars that Bear is not one of them. There is no way to describe the gratitude those of us who haven’t served in the military – like me – owe to those who have and lost their lives in doing so.

Until next week,

Keep living your life!

All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Dare You Have Your First Mother’s Day?

Mother’s Day is this Sunday… and it’s my step-daughter’s first. That led me to remember my first with Ms. Nima Beckie Rosensfit and  I realized I’d never even heard of Chronic Kidney Disease then. But what if I had and I wanted to have a baby. What would I have to know?

That got me going. I know I blogged about this topic in February of this year, but I wanted to see if there was enough information for a part 2 to that blog. But, first, let’s take a look at how pregnancy affects the kidneys in a non-ckd woman.

The US National Library of Medicine, National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4089195/  helpful here:

“GFR rises early to a peak of 40% to 50% that of prepregnancy levels, resulting in lower levels of serum creatinine, urea, and uric acid. There is a net gain of sodium and potassium, but a greater retention of water, with gains of up to 1.6 L. Through effects of progesterone and alterations in RAAS, the systemic vascular resistance falls, leading to lower blood pressure and an increased RPF.”

You may need a reminder of some of these terms. Let’s see if What Is It and How Did I Get It? Early Stage Chronic Kidney Disease has their definitions. Aha! There are potassium and creatinine.

““Creatinine is … a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger.

“Potassium: One of the electrolytes, important because it counteracts sodium’s effect on blood pressure.”

Why is this counteraction important you ask.  This tidbit from SlowItDownCKD 2011 explains:

“Then I found this in BrightHub.com’s February 13th article The Importance of the Potassium and Sodium Balance.

‘When there is potassium and sodium balance, cells, nerves and muscles can  all  function  smoothly.  With  an  imbalance,  which  is almost  always due to both an excess of sodium, and a deficiency of potassium, a set of reactions occurs leading to high blood pressure and unnecessary strain on blood vessels, the heart and the kidneys. Research has shown that there is a direct link between chronic levels of low potassium and kidney disease, lung disorders, hypertension and stroke’.”

And urea? The newly published SlowItDownCKD 2017 contains this information:

http://www.patient.co.uk/health/routine-kidney-function-blood-test has the simplest explanation.

‘Urea is a waste product formed from the breakdown of proteins. Urea is usually passed out in the urine. A high blood level of urea (‘uraemia’) indicates that the kidneys may not be working properly or that you are dehydrated (have low body water content).’”

It’s probably common knowledge that serum means in the blood rather than urine and that uric acid is the waste that remains when your body’s cells die. What baffled me was RAAS and RPP. It turns out that RAAS is renin-angiotensin-aldosterone system which, while interesting, would simply take too long to explain for this blog’s purpose. RPF is renal plasma flow. I love words, but this was getting to be a bit much for even me. I wanted to get to CKD in pregnancy. So let’s do that.

Let’s say I needed more reassurance that I could have a baby even though I had CKD. I felt like I found just that when I discovered RareRenal  at http://rarerenal.org/patient-information/pregnancy-and-chronic-kidney-disease-patient-information/and what they had to say about pregnancy and CKD.

“Good antenatal care from the earliest stages of pregnancy improves outcomes generally. This is particularly true for women with CKD. Planning for pregnancy allows women with CKD to get pregnant at the right time, while on the right medications and in the best possible health. To achieve this all women with significant CKD should receive pre-pregnancy advice so that they can assess the potential risk and to ensure that everything is in place to minimise it.

These are the key things to think about before getting pregnant:

When should a woman with CKD get pregnant?  This depends on the nature of the kidney disease. In general if a woman’s kidney function is likely to get worse over time it is better to plan the pregnancy sooner rather than later while function is still good. On the other hand, for a kidney disease that flares up and then settles down, such as Lupus nephritis, it is better to wait until the flare has settled for at least six months. Other factors to take into account are a woman’s age and fertility. They may have had drugs in the past to treat a kidney condition that can impair fertility (e.g. cyclophosphamide). If so they may need to take advice on whether this is an additional problem. Should she get pregnant at all? There are very few women these days who are advised not to get pregnant. Even then it is always up to the woman (and her partner) whether to take the risk. It is much better to be forewarned of the possible problems and to discuss these in advance.

Will she need extra medicines when she’s pregnant?  Women trying to get pregnant should start taking the vitamin folic acid to reduce the chance of their baby having spina bifida, an abnormality of the spinal cord. The normal dose of folic acid is 400ug per day and can be bought over the counter. However, if the folate level is low or a patient is on the drug azathioprine which affects the way folic acid works, the dose of 5mg daily may be prescribed. No other over the counter vitamins are required unless specifically advised by a doctor or midwife. All pregnant patients should avoid additional supplements of vitamin A. If vitamin D levels are low GPs will advise correction with high dose prescribed vitamin D (also known as cholecalciferol). Women with kidney diseases are at higher risk of pre-eclampsia. Aspirin lowers the risk of pre eclampsia, and women with CKD are usually offered a low dose aspirin (75mg once daily) throughout pregnancy unless there are specific reasons not to take it e.g. they are allergic to aspirin. Pregnant women with a high level of protein in their urine have an increased risk of developing blood clots (thrombosis). This can be reduced by small daily injections of low molecular weight heparin. Heparin reduces the way the blood clots. Both pregnancy and CKD can cause a low blood count (anaemia). When combined, anaemia can be more of a problem. Iron tablets or injections may be used and some women need to take the hormone erythropoietin (EPO) as  a weekly or monthly injection to overcome the anaemia. Blood transfusions are usually avoided in pregnancy. Pregnancy alters the control of sugar (glucose) in the body. This may be worse for patients on steroids (e.g. prednisolone), those from an Asian or African background, or who are overweight. Patients may develop a condition called gestational diabetes (diabetes caused by pregnancy) and require treatment with insulin.” How very reassuring. I’m ready… I mean are you ready to have your baby?

Until next week,

Keep living your life!

Joy to the World

As Three Dog Night sang in Hoyt Axton’s song:

“Joy to the world
All the boys and girls now
Joy to the fishes in the deep blue sea
Joy to you and me”

Turn up your speakers and give a listen. See if you don’t feel more joy just from listening. Thanks to Three Dog Night for placing that grin back on my face when it’s gotten lost… and to YouTube, too.

I’ve written about what stress, grief, and shock do to your body, but with recent events I have reason to wonder what happiness does to your body. The birth of our first grandchild has revealed levels of joy I never knew existed. Add to that our youngest’s engagement and you’ll find me floating at least three feet above the ground most of the time.

I did my usual poking around and found some answers.

Calgary Psychology at http://www.calgarypsychology.com/happiness/correlation-health-happiness has some information for us, although it’s not as recent as I’d like it to be since it was published in 2010:

“A study in the journal Proceedings of the National Academy of Sciences examined the link between happiness and a number of health factors in 200 Caucasian adults, age 45-59 years, all of whom worked for the government in London, England. The study assessed each participant on a work day and weekend day, measuring them at work and play for a number of criteria including blood pressure, heart rate and stress hormone (cortisol) levels. Participants were measured under normal conditions and after a mental stress test. Under each condition participants ranked their happiness on a scale of 1 (lowest) to 5 (highest). There were no differences in happiness between people who were married or single, male or female or of varying socioeconomic status; however the happiest participants had the best results across the board for the health markers. I.e. happier people had lower heart rates, and an average of 32% lower levels of cortisol which can have a direct effect on other elements such as blood sugar.”

Cortisol? Anyone remember what that is? Let’s have a reminder, please. I found this in SlowItDownCKD 2016. It’s from Reference.com at https://www.reference.com/science/function-adrenal-gland-72cba864e66d8278.

“Cortisol is a hormone that controls metabolism and helps the body react to stress, according to Endocrineweb. It affects the immune system and lowers inflammatory responses in the body. …”

Want a little reminder about metabolism? I do. According to Dr. Ananya Mandal from News Medical Life Sciences at https://www.news-medical.net/life-sciences/What-is-Metabolism.aspx:

“Metabolism is a term that is used to describe all chemical reactions involved in maintaining the living state of the cells and the organism. Metabolism can be conveniently divided into two categories:

  • Catabolism – the breakdown of molecules to obtain energy
  • Anabolism – the synthesis of all compounds needed by the cells”

Aha! So joy or being happy helps the body produce the hormone that obtains energy and synthesizes what we need to live. Now I get it why I actually feel better physically when I’m happy. I was in the throes of bronchitis when my grandson was born and started getting better right away. Magic? Nope, just plain joy at work in my body.

Notice joy may have an affect via cortisol on your blood sugar, too. Blood sugar ? Why is that important? The following is from a study published in The American Journal of Kidney Disease that was included in SlowItDownCKD 2011

“Good control of blood sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney

function.”

And lower heart rates? How does that help us? I’ve don’t think I’ve written about that so I hopped right over to my longtime favorite the Mayo Clinic at https://www.mayoclinic.org/healthy-lifestyle/fitness/expert-answers/heart-rate/faq-20057979.

“A normal resting heart rate for adults ranges from 60 to 100 beats a minute. Generally, a lower heart rate at rest implies more efficient heart function and better cardiovascular fitness.”

Good news. Being happy – joyous in my case – is good for the heart, which automatically means it’s good for the kidneys since your heart health has a lot to do with your kidney health and vice-versa.

Let’s not forget that the lower levels of cortisol joy causes “lowers inflammatory responses in the body.” Chronic Kidney Disease is an inflammatory disease. I love it! Just by being happy, I’m helping myself with my CKD.

As the late night television commercials cautioned us once up on a time: But wait, there’s more. I turned to the Greater Good Science Center based at UC Berkeley. According to the website, they, “provide a bridge between the research community and the general public.”

That’s where I found this quote from a 2015 article at: https://greatergood.berkeley.edu/article/item/six_ways_happiness_is_good_for_your_health.

“Love and happiness may not actually originate in the heart, but they are good for it. For example, a 2005 paper found that happiness predicts lower heart rate and blood pressure. In the study, participants rated their happiness over 30 times in one day and then again three years later. The initially happiest participants had a lower heart rate on follow-up (about six beats slower per minute), and the happiest participants during the follow-up had better blood pressure.”

Oh, blood pressure. This is also called hypertension and is defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease this way:

“A possible cause of CKD, 140/90mm Hg is currently considered hypertension, a risk factor for heart disease and stroke, too.”

That book was written in 2010. The guidelines changed in November of last year. Take a look at the infogram from the American Heart Association. I’ve also learned that hypertension is the second leading cause of CKD.

What’s the first? You guessed it: diabetes or blood sugar that is not controlled. I am overjoyed at the results of my poking around about joy. By being fully present to the joy in my life, by simply feeling that joy, while I personally can no longer prevent my CKD, I can further slow down the progression of the decline in my kidney function. Being happy is also helping to prevent diabetes from entering my life and working on keeping my blood pressure closer to where it belongs.

This joy just goes on and on for me. This year alone, it’s been celebration after celebration: birthdays, anniversaries, the birth, the engagement, triumphs for those I love. My list grows and grows. Why not consider a little joy for your body’s sake, if not for your mental state?

Until next week,

Keep living your life!