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!

Now That’s Patience.

This is decidedly the month for blogs based upon reader questions. As usual, I first must remind you that I am not a doctor and you need to speak with yours before you take any action. As you know, I had major surgery in September to remove a pancreatic cancer tumor which included removing part of the pancreas, the gall bladder, and the spleen. Since then I’ve been hospitalized twice for complications of this surgery… and this particular reader has waited all this time for answers to her questions. I’m impressed.

Let’s not make her wait one second longer. She is a woman in her 40s who has questions about Chronic Kidney Disease and the menstrual period. Hey, guys, don’t go anywhere. Read today’s blog and you just might be able to offer some insight to your female CKD patient friends who have similar questions.

It seems her period went on and on… for two weeks. Her doctor (not a nephrologist) ordered medications for her, but she wasn’t sure if they were safe for her kidneys. In her country, you cannot simply make an appointment or call your nephrologist. You need to wait, and wait, and wait until you are given an appointment. Of course, her first course of these medications is now long over, but perhaps we can help her if she’s ever in this situation again… or if you are.

The first medication prescribed was Traxan. Don’t worry if that doesn’t ring a bell; I’d never heard of any of these medications before either. According to Drugs.com at https://www.drugs.com/international/traxan.html,

Traxan

Traxan may be available in the countries listed below.

Ingredient matches for Traxan

Tranexamic Acid

Tranexamic Acid is reported as an ingredient of Traxan in the following countries:

  • Philippines”

which makes sense since this particular reader is from the Philippines. This doesn’t tell us much, so let’s try Tranexamic Acid.

WebMD at https://www.webmd.com/drugs/2/drug-32677-1331/tranexamic-acid-oral/tranexamic-acid-650-milligram-tablet-oral/details offers the following information:

“This medication is used to treat heavy bleeding during your menstrual period. Tranexamic acid works by slowing the breakdown of blood clots, which helps to prevent prolonged bleeding. It belongs to a class of drugs known as antifibrinolytics.

Tranexamic acid is not a hormone. It does not treat other menstrual or premenstrual symptoms. It does not stop your period. It is not a form of birth control and does not protect against sexually transmitted diseases.”

And now the biggie: Is this safe if you have CKD? There is not much research on this other than a study with a very small population of only four patients. They did suffer adverse reactions, but three were on dialysis and the fourth had a transplant. The take away from over an hour’s search is that the dosage may have to be modified.

Mefenamic Acid was the second drug prescribed. By the way, the brand name for this drug is Ponstel.

“Mefenamic acid is used to relieve mild to moderate pain, including menstrual pain (pain that happens before or during a menstrual period). Mefenamic acid is in a class of medications called NSAIDs. It works by stopping the body’s production of a substance that causes pain, fever, and inflammation.”

This information was offered by 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/druginfo/meds/a681028.html.

Houston, we have a problem. NSAIDS are something all kidney patients should avoid. I was delighted to happen upon the Curbsiders (a board-certified internists’ group) at https://thecurbsiders.com/podcast/146-nephmadness-pain-meds-in-chronic-kidney-disease who explained the NSAID problem in terms I (and hopefully you) can understand:

NSAIDs in CKD

Mechanism

  • NSAIDs work by inhibiting cyclooxygenase (COX) and thus decreasing prostaglandin synthesis. This reduces the inflammation causing pain.
  • Renal blood flow, particularly in CKD, often depends on prostaglandins and can decrease with NSAID use.
  • Heart failure, cirrhosis, nephrotic syndrome have low effective renal blood flow which relies on prostaglandins. In these patients, NSAIDs may decrease the eGFR.
  • When close to ESRD, you run the risk that a transient decrease in blood flow may still cause an issue…possibly knocking patients onto dialysis.
  • If a patient is already on dialysis and anuric, the adverse effects of NSAIDs are less significant. For those patients still making urine, there are still renal risks.”

Well, what about Mefenamic acid and CKD? Healthline (I simply cannot stop thanking you for those two best kidney disease blog awards!) at https://www.healthline.com/health/mefenamic-acid-oral-capsule#dosage makes no bones about it:

For people with kidney problems: If you have kidney disease, your body might not be able to clear out this drug as well as it should. This may cause increased amounts of mefenamic acid in your blood and increase your risk of side effects. Your doctor may prescribe a decreased dosage.”

Hopefully, a decreased dosage was prescribed.

And, finally, Marvelon. Forgive me, but I instantly thought of Marvel Comics. Actually, Marvelon is birth control. Oh, I wonder if my reader knew that and wanted birth control. Is it safe for CKD patients? Let’s find out together.

“Do not take this medication if you:

  • have diabetes with blood vessel complications (e.g., heart disease, eye disease, kidney disease, foot infections)
  • have very high cholesterol or triglyceride levels”

These are only two of the eighteen warnings I found on MedBroadcast at https://medbroadcast.com/drug/getdrug/marvelon This is a new site for me, so let me share what they have to say about themselves:

“Condition and disease information is written and/or reviewed by the MediResource Clinical Team. The contents of this site are for informational purposes only and are meant to be discussed with your physician or other qualified health care professional before being acted on. Never disregard any advice given to you by your doctor or other qualified health care professional. Always seek the advice of a physician or other licensed health care professional regarding any questions you have about your medical condition(s) and treatment(s).

This site is not a substitute for medical advice. © 1996 – 2020”

Thank you for being so patient, Philippine reader. Remember, talk to your doctor before doing anything.

Until next week,

Keep living your life!

Belly Fluid Retention While Taking a Diuretic?

Finally, we get to the question one reader has been waiting to be answered for several months while I dealt with complications from pancreatic cancer surgery. Thank you for your patience. The question has to do with reducing belly fluid retention that seems to be the result of taking the diuretic ethacrynic acid for over two years.

What is ethacrynic acid used for? I don’t know. Let’s find out together. CardioSmart of the American College of Cardiology at https://www.cardiosmart.org/Healthwise/d006/49/d00649 tells us that ethacrynic acid is,

“… a loop diuretic (water pill) that prevents your body from absorbing too much salt, allowing the salt to instead be passed in your urine.”

I get what a diuretic is, but what’s a loop diuretic? Let’s go to Wikipedia at https://en.wikipedia.org/wiki/Loop_diuretic for this one, but keep in mind that anyone – medical personnel or not – can edit an entry on this site.

Loop diuretics are diuretics that act at the ascending limb of the loop of Henle in the kidney. They are primarily used in medicine to treat hypertension and edema often due to congestive heart failure or chronic kidney disease. While thiazide diuretics are more effective in patients with normal kidney function, loop diuretics are more effective in patients with impaired kidney function.”

I see. So, as kidney disease patients we are offered loop diuretics instead of thiazide diuretic. The loop diuretic is to prevent too much salt absorption. And we need to limit our salt absorption as CKD patients because???

Thank you to DaVita Kidney Care at https://www.davita.com/diet-nutrition/articles/basics/sodium-and-chronic-kidney-disease for the following:

“… too much sodium can be harmful for people with kidney disease because your kidneys cannot eliminate excess sodium and fluid from your body. As sodium and fluid buildup in your tissues and bloodstream, your blood pressure increases and you feel uncomfortable.

High blood pressure can cause more damage to unhealthy kidneys. This damage further reduces kidney function, resulting in even more fluid and waste build up in the body.

Other sodium-related complications are:

  • Edema: swelling in your legs, hands and face
  • Heart failure: excess fluid in the bloodstream can overwork your heart making it enlarged and weak
  • Shortness of breath: fluid can build up in the lungs, making it difficult to breathe”

Now it makes sense that you don’t want to absorb too much salt if you’re a Chronic Kidney Disease patient.

Wait a minute. If a diuretic is a water pill, why is this reader retaining most of her fluid in her belly. Shouldn’t it be passing out of her body in her urine? I found this explanation on Livestrong at https://www.livestrong.com/article/498477-retaining-fluid-while-taking-diuretics/ :

“In some cases, fluid retention will not respond well to diuretic therapy. Diuretics are not an effective treatment for a type of fluid retention known as idiopathic cyclic edema. In fact, taking diuretics for this condition can make the retention worse. It is not known what causes this condition, but it is associated with hypothyroidism, obesity and diabetes mellitus. This condition often occurs before menstruation and is more common in young women.”

I did see a picture of this reader and didn’t see any signs of obesity, but do not know if she is dealing with diabetes mellitus or hypothyroidism. I’m so sorry, dear reader, but it looks like I’ve hit the same dead end you have in asking your doctors for help.

Change of subject. It’s a new year and the kidney world is reacting to that. For instance, KidneyX, stage 2 is now in effect.

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. Full eligibility rules can be found on page 6 of the prize announcement.

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)

Specific technical design targets for each category can be found on page 4 of the prize announcement. These 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.

For specific judging criteria, please review the prize announcement.

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

The American Association of Kidney Patients is also looking for participants.

AAKP is pleased to announce an opportunity for individuals with chronic kidney disease, and their caregivers, to participate in a research survey that will help us better understand the impact chronic kidney disease has had on their lives.

To find out whether you qualify, please click on the box below that corresponds with the survey that is most appropriate for you, and complete the brief screening questionnaire. If eligible, you will be directed to the full survey which is expected to take about 15-to-20 minutes to complete. Kindly note, the survey must be completed in one sitting so it is important to start the survey at a time when you feel confident you can allocate enough time to complete the survey in its entirety.

As a show of appreciation for your time and input, participants who complete

the full survey will receive a check for $35!

You can read more about this at https://survey-d.dynata.com/survey/selfserve/53b/1912660?CT=1#?

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!

Gee, That Smells Nice

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

It’s Like the Sahara in There

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

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

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

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

Treatment for dry mouth depends on the cause.”

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

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

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

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

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

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

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

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

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

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

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

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

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

“Common symptoms include:

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

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

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

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

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

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

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

Until next week,

Keep living your life!

re·​ha·​bil·​i·​ta·​tion 

What! As if staying in the hospital for six to thirteen days weren’t enough, it turned out that I would be in a rehabilitation center for an additional six to eight weeks. Again, while this was for pancreatic cancer, many Chronic Kidney Disease patients who have had surgery may require a stay in such places, too. I look for new experiences, but not this kind.

human-438430Let’s go to my favorite dictionary, the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/rehabilitation for the definition of the word.

“: to bring (someone or something) back to a normal, healthy condition after an illness, injury, drug problem, etc.

b: to teach (a criminal in prison) to live a normal and productive life

c: to bring (someone or something) back to a good condition”

I hope it’s clear that it’s the first definition we’re dealing with today.

Forgive me for being dense, but I still didn’t get how that’s going to be done. So I searched for help and MedlinePlus, which is part of the U.S. National Library of Congress which, in turn, is part of the National Health Institutes, at https://medlineplus.gov/rehabilitation.html did just that.

What happens in a rehabilitation program?a.d.

When you get rehabilitation, you often have a team of different health care providers helping you. They will work with you to figure out your needs, goals, and treatment plan. The types of treatments that may be in a treatment plan include

  • Assistive devices, which are tools, equipment, and products that help people with disabilities move and function
  • Cognitive rehabilitation therapy to help you relearn or improve skills such as thinking, learning, memory, planning, and decision making
  • Mental health counseling
  • Music or art therapy to help you express your feelings, improve your thinking, and develop social connections
  • Nutritional counseling
  • Occupational therapy to help you with your daily activities
  • Physical therapy to help your strength, mobility, and fitness
  • Recreational therapy to improve your emotional well-being through arts and crafts, games, relaxation training, and animal-assisted therapy
  • Speech-language therapy to help with speaking, understanding, reading, writing and swallowing
  • Treatment for pain
  • Vocational rehabilitation to help you build skills for going to school or working at a job

Depending on your needs, you may have rehabilitation in the providers’ offices, a hospital, or an inpatient rehabilitation center. In some cases, a provider may come to your home. If you get care in your home, you will need to have family members or friends who can come and help with your rehabilitation.”

Personally, I won’t need some of these such as cognitive rehabilitation, speech-language therapy, and vocational rehabilitation. Brain and speaking aren’t involved in pancreatic surgery and I’m retired. You may be in the same situation if you have rehabilitation or you may not. It’s a list that’s made unique for each patient. I’ve got to remind you here that I’m not a doctor; this is a lay person giving her opinion.

IMG_1843(Edited)

Hmmm, it seemed pretty clear that each type of surgery requires its own sort of rehabilitation. Now that we know what’s involved, let’s see who would be involved if you required rehabilitation after a surgery. WebMD at https://www.webmd.com/healthy-aging/rehab-after-surgery#1 offered a succinct, easy to understand answer.

Who Works With You

Different experts help with different parts of your rehab. Some people who might be on your team:

Physiatrist. He’s a doctor who specializes in rehab. He tailors a plan to your needs and oversees the program to make sure it’s going well.

Physical therapist. He teaches you exercises to improve your strength and the range you have when you move your arm, leg, or whatever part of your body had the operation.

Occupational therapist. He helps you regain the skills you need for some basic activities in your everyday life. He might teach you how to cook meals, get dressed, shower or take a bath, and use the toilet. He’ll also show you how to use gadgets that can help you care for yourself more easily, such as a dressing stick or elastic shoelaces. Some occupational therapists will visit your home to make sure it’s safe and easy for you to get around.

Dietitian. He’ll help you plan healthy meals. If your doctor has told you to avoid salt, sugar, or certain foods after your surgery, the dietitian can help you find other choices.

Speech therapist. He helps with skills like talking, swallowing, and memory. Speech therapy can be helpful after surgery that affects your brain.

Nurses. They care for you if you’re staying for a few weeks or months in a rehab center. They may also come to your home to help track your recovery and help you with the transition to life back at home.

Psychologist or counselor. It’s natural to feel stressed out or depressed after your surgery. A mental health professional can help you manage your worries and treat any depression.

It can take many months to recover from an operation, but be patient. A lot depends on your overall health and the kind of procedure you had. Work closely with your rehab team and follow their instructions. Your hard work will pay off.”

Looking over the list, I won’t need a speech therapist and neither would you if you have some kind of kidney related surgery. I’m not so sure about a psychologist or counselor, either. I’m sort of thinking that going through chemotherapy and radiation treatments without one, I won’t need one after surgery. Then again, I’ve never had major surgery before and I’ve been told this is major major surgery. However, should I find myself in a position where my medical team and/or I feel I need counseling, I would not hesitate to ask for it… just as I’ve asked for help with the cancer.ot

Rehabilitation offers so much. I had no idea this was available until my surgeon told me about it. Nor did I know that Medicare will pay for it… sort of. This is from Medicare at https://www.medicare.gov/coverage/inpatient-rehabilitation-care.

 

“You pay this for each benefit period:

  • Days 1-60: $1,364 deductible.*
  • Days 61-90: $341 coinsurance each day.
  • Days 91 and beyond: $682 coinsurance per each “lifetime reserve day” after day 90 for each benefit period (up to 60 days over your lifetime).
  • Each day after the lifetime reserve days: all costs.

*You don’t have to pay a deductible for care you get in the inpatient rehabilitation facility if you were already charged a deductible for care you got in a prior hospitalization within the same benefit period. This is because your benefit period starts on day one of your prior hospital stay, and that stay counts towards your deductible.”

Excuse me while I go check my bank account.

Until next week,

Keep living your life!

But Why?

As Chronic Kidney Disease patients, we all know that proteinuria is one indication of our disease. Would you like a reminder about what proteinuria is? Here’s one from The American Kidney Fund at http://www.kidneyfund.org/kidney-disease/kidney-problems/protein-in-urine.html:

“Healthy kidneys remove extra fluid and waste from your blood, but let proteins and other important nutrients pass through and return to your blood stream. When your kidneys are not working as well as they should, they can let some protein (albumin) escape through their filters, into your urine. When you have protein in your urine, it is called proteinuria (or albuminuria). Having protein in your urine can be a sign of nephrotic syndrome, or an early sign of kidney disease.”

I used to think that’s all it was: an indicator of CKD. That is until my occupational therapist and I got to talking about the edema caused by neuropathy.

Ah! Flash! We did also talk about Havimat which I wrote about last week and I checked on a number of sites to see if it were safe for an active tumor. The consensus of the sites agreed it was safe to use on someone with an active tumor that was being treated as long as it was not used on the location of the tumor itself. I feel better now about having had three sessions with Havimat since the occupational therapist was careful not to use it anywhere near my pancreas – the site of the tumor.

But I digress. Back to the topic at hand: proteinuria. It seems that protein is needed in the body, rather than being excreted in the urine. You guessed it. My question became the topic of today’s blog: But Why?

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

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

Okay, got it that protein is very necessary but what does that have to do with the chemotherapy I had that seemed to cause the proteinuria problem?  After looking at bunches of different sites (Today’s blog is taking a very long time to write.), I gleaned a little hint here and a little hint there until I figured out that certain types of chemotherapy may make proteinuria worse if you already have it, or cause it. Boo for me; I lost on that one since I already had proteinuria.

Well, what about the edema from the neuropathy? Was proteinuria affecting that in some way? Or did I have it backwards and it was the neuropathy that was causing the edema. I went to eMedicineHealth at https://www.emedicinehealth.com/neuropathy/article_em.htm#what_is_neuropathy for some help with this.

“Certain drugs and medications can cause nerve damage. Examples include cancer therapy drugs such as vincristine(Oncovin, Vincasar), and antibiotics such as metronidazole (Flagyl), and isoniazid (Nydrazid, Laniazid).”

This little tidbit is from MedicalNewsToday at https://www.medicalnewstoday.com/articles/323481.php :

“Chemotherapy can damage nerves that affect feeling and movement in the hands and feet. Doctors call this condition chemotherapy-induced peripheral neuropathy (CIPN). Symptoms can be severe and may affect a person’s quality of life.”

By the way, diabetic neuropathy is another form of peripheral neuropathy.

Uh-oh, now what do I do? The HonorHealth Research Institute in Scottsdale, Arizona, where I’m being treated offered both the gabapentin for the pain (which I skipped since I want to try non-drug treatment first) and occupational therapy. Let’s see what that might do for me. Please note that occupational therapy works at reducing the pain of the neuropathy.

I have a bag of toys. Each has a different sensory delivery on my hands and feet. For example, there’s a woven metal ring that I run up and down my fingers and toes, then up my arms and legs. I do the same with most of the other toys: a ball with netting over it, another with rubber strings hanging from it. I also have a box of uncooked rice to rub my feet and hands in… and lots of other toys. The idea is to desensitize my hands and feet.

I was also given physical exercises to do, like raising my fisted hands above my head and straightening out my fist several times.  This is one of many exercises. Do you remember the old TV show, E.R? It takes me slightly longer than one 43 minute episode to complete the exercises.

When I go to see the therapist, she uses the Havimat (electrical stimulation), another machine that sucks the chemo out (no kidding… and it doesn’t hurt either.), and a third that pulses. I am amazed at how the edema disappears when she uses these. But, unfortunately, the effect doesn’t stay very long. Compression socks have helped and, despite their not-so-pleasing appearance are quite comfortable.

Wow! Proteinuria is so much more than just an indication that you may have Chronic Kidney Disease.

Ready for a topic change? The following is part of an email I received from KDIGO (Kidney Disease – Improving Global Outcomes).

“We … invite your comments at any time.  Suggest topics, look for opportunities for KDIGO to implement its work in your area, bring new ideas to us, and help us become more relevant to the lives of patients like you. As a global organization, we seek to continue to develop communication channels to patients throughout the world.  This is difficult to do from one perspective, but if we work together we can build a robust base of individuals and ideas that will help us plan and carry out our mission.

KDIGO doesn’t have any members or local entities to whom we are accountable.  We only are accountable to you, our patients.  Outcomes of your care are our mission.  We can do it better if you work with us and give us your constructive input.

Again, thanks for letting us know you’d like to be a part of this global effort.  Your ideas are welcome and will be taken into account. “

Keep those comments coming, folks. Their email is kdigocommunications@kdigo.org.

Until next week,

Keep living your life!

Not Nuked

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

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

“How do microwaves work?

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

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

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

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

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

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

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

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

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

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

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

“Why does radiation therapy cause side effects?

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

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

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

Are there options to prevent or treat these side effects?

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

Potential side effects

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

Common side effects of radiation therapy include:

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

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

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

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

Until next week,

Keep living your life!

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

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

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

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

“in·fu·sion

(in-fyū’zhŭn),

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What I found especially interesting is that,

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

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

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

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

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

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

Until next week,

Keep living your life!

Diabetic Neuropathy or Not: I WILL Dance Again

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What Are the Main Ways That Neuropathy Is Treated?

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

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

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

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

Here are some other ways diabetic neuropathy may be treated:

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

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

Until next week,

Keep living your life!

Platelets Keep It Together

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

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

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

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

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

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

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

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

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

Red blood cells, which carry oxygen

White blood cells, which fight infection

Hemoglobin, the oxygen-carrying protein in red blood cells

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

Platelets, which help with blood clotting”

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

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

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

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

2. the product obtained by this process.

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

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

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

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

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

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

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

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

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

2: the toxic bodily condition associated with uremia”

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

More Time to Learn

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

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

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

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

Causes

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

No Longer a Transfusion Virgin

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

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

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

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

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

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

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

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

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

What causes anemia in chronic kidney disease?

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

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

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

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

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

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

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

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

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

I added platelets to the list since they are such an integral part of your blood. MedLinePlus at https://medlineplus.gov/plateletdisorders.html explains succinctly just what they are and what they do:

“Platelets, also known as thrombocytes, are small pieces of blood cells. They form in your bone marrow, a sponge-like tissue in your bones. Platelets play a major role in blood clotting. Normally, when one of your blood vessels is injured, you start to bleed. Your platelets will clot (clump together) to plug the hole in the blood vessel and stop the bleeding. You can have different problems with your platelets:

If your blood has a low number of platelets, it is called thrombocytopenia. This can put you at risk for mild to serious bleeding. The bleeding could be external or internal. There can be various causes. If the problem is mild, you may not need treatment. For more serious cases, you may need medicines or blood or platelet transfusions….”

I had my second infusion of platelets along with my first transfusion last week.

I’ve offered a multitude of definitions today. The point here is that both CKD patients and chemotherapy patients (and others suffering from a host of maladies) may need transfusions.

Right. I haven’t discussed what a transfusion is yet. Dictionary.com at https://www.dictionary.com/browse/transfusion defines it a little simplistically for us:

“the direct transferring of blood, plasma, or the like into a blood vessel.”

The MayoClinic at https://www.mayoclinic.org/tests-procedures/blood-transfusion/about/pac-20385168 adds:

“Your blood will be tested before a transfusion to determine whether your blood type is A, B, AB or O and whether your blood is Rh positive or Rh negative. The donated blood used for your transfusion must be compatible with your blood type.”

That’s when we discovered my son-in-law and I have the same blood type. Nice to know… just in case, you understand.

Before I leave you today, I want to remind my USA readers that this is Memorial Day. Having married a veteran, I now understand that we are honoring those who gave their saves to preserve ours no matter how long ago or how recent. Please give them a moment of your thoughts.

Until next week,

Keep living your life!

Clinical Trials Day

By now, you probably all know that I chose a clinical trial to treat my pancreatic cancer. But did you know that today, May 20th, is Clinical Trials Day? What’s that, you ask? Let’s find out together. According to The Association of Clinical Research Professionals (ACRP) at http://www.clinicaltrialsday.org/:

“WHY MAY 20?

Clinical Trials Day is celebrated around the world in May to recognize the day that James Lind started what is often considered the first randomized clinical trial aboard a ship on May 20, 1747.

HERE’S THE STORY

May, 1747.

The HMS Salisbury of Britain’s Royal Navy fleet patrols the English Channel at a time when scurvy is thought to have killed more British seamen than French and Spanish arms.

Aboard this ship, surgeon mate James Lind, a pioneer of naval hygiene, conducts what many refer to as the first clinical trial.

Acting on a hunch that scurvy was caused by putrefaction of the body that could be cured through the introduction of acids, Lind recruited 12 men for his ‘fair test.’…


From The James Lind Library:

Without stating what method of allocation he used, Lind allocated two men to each of six different daily treatments for a period of fourteen days. The six treatments were: 1.1 litres of cider; twenty-five millilitres of elixir vitriol (dilute sulphuric acid); 18 millilitres of vinegar three times throughout the day before meals; half a pint of sea water; two oranges and one lemon continued for six days only (when the supply was exhausted); and a medicinal paste made up of garlic, mustard seed, dried radish root and gum myrrh.

Those allocated citrus fruits experienced ‘the most sudden and good visible effects,’ according to Lind’s report on the trial.

Though Lind, according to The James Lind Library, might have left his readers ‘confused about his recommendations’ regarding the use of citrus in curing scurvy, he is ‘rightly recognized for having taken care to “‘compare like with like’’, and the design of his trial may have inspired ‘and informed future clinical trial design.'”

I’ve written about James Lind before, so you may want to re-read the 8/20/18 blog to read more about him and his experiments.

Time travel to 2019 with me, if you will, to read what Antidote.Me has to offer in the way of Chronic Kidney Disease Clinical Trials.

****

Headline: Chronic Kidney Disease Research: How to Get Involved

By Nancy Ryerson

May 20 is Clinical Trials Day. Every year, patient advocates and research groups participate to raise awareness of how clinical trial participation drives research progress. You may know that new treatments for Chronic Kidney Disease (CKD) can’t move forward without clinical trial volunteers, but you may not know how to find active, relevant trials in your area.

Below, you’ll find answers to commonly asked questions about finding CKD clinical trials, including who can join, how to find trials, and the kinds of questions CKD research aims to answer.

How can I find Chronic Kidney Disease clinical trials near me?

There are currently 171 research studies for CKD looking for volunteers in the United States. All clinical trials are listed on ClinicalTrials.gov, but because the website was developed with researchers in mind rather than patients, it can be difficult for patients to navigate. Antidote is a clinical trial matching company that provides a patient-friendly clinical trial search tool to health nonprofits and bloggers, including this blog. With the Antidote tool, you can answer a few questions about your medical history and where you’d like to find a trial to receive a list of trials you may qualify for in your area. You can also sign up to receive alerts when new trials are added near you.

Who can join CKD clinical trials?

 It’s a common misconception that clinical trials only need volunteers who have been recently diagnosed to take part. It’s also untrue that clinical trials are only a “last resort” for patients who have exhausted other options. In reality, clinical trials can be a care option for patients at any point after diagnosis. CKD trials need volunteers with mild, moderate, and severe kidney disease to participate in different trials. Some trials also look for patients with specific comorbidities, such as hypertension. 

What does CKD research typically focus on? 

Clinical trials for Chronic Kidney Disease (CKD) research potential new treatments to slow or stop CKD, as well as treat common conditions associated with CKD, such as anemia or hypertension.

CKD clinical trials aren’t limited to research into new drugs, either. For example, a kidney-friendly diet can make a significant difference in reducing kidney damage, and more research is needed into specific interventions that can help. Research studies are also looking into the impact exercise can have on CKD symptoms and progression.

Clinical trials may also be observational. These kinds of trials don’t test an intervention – a drug, diet, lifestyle change, etc. Instead, participants are divided into groups and observed for differences in outcome. 

Do clinical trials always use a placebo? 

In clinical trials, placebos – also known as “sugar pills” – help researchers understand the effectiveness of an experimental treatment. While they can be an important part of the research process, it’s also understandable that patients hope they won’t receive the placebo in a clinical trial.

If you’re considering taking part in a trial but you’re concerned about receiving a placebo, it’s important to know that not all trials use one. Many trials test a potential new treatment against the standard of care, for example. In some trials that use a placebo, everyone in the trial may receive the study drug at some point during the trial. 

I don’t have time to participate in a clinical trial.

Time restraints are another reason many patients hesitate to participate in clinical trials. While some clinical trials may require weekly site visits, others may only ask participants to come in every month or so. Some trials may also offer virtual visits online or home visits to help reduce the number of trips you’ll need to take to get to a site. When you’re considering joining a clinical trial, ask the study team any questions you have about the trial schedule, reimbursement for travel, or anything else about participation.

Interested in finding a trial near you? Use the SlowItDownCKD trial search, powered by Antidote, to start your search. (Gail here: It’s at the bottom right hand side of the blog roll.)

Ladies and Gentleman, start your motors! I hope you find just the right CKD Clinical Trial for you.

Until next week,

Keep living your life!

Chemo and My Kidneys

 As most of you know, I am extremely protective of my kidneys. When I was first diagnosed with Chronic Kidney Disease 11 years ago, my eGFR was only 39. Here’s a quick reminder of what the eGFR is from my first CKD book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

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

39. That’s stage 3B, the lower part of stage 3B. During the intervening 11 years, I’ve been able to raise it to 50 (and sometimes higher for short periods) via vigorously following the renal diet, exercising, avoiding stress as much as possible, maintaining adequate sleep, and paying strict attention to the medications prescribed for me. While the medications were the ones I had been taking for high blood pressure prior to being diagnosed with CKD, they worked in my favor.

This excerpt from The National Center for Biotechnology Information (NCBI) part of the United States National Library of Medicine (NLM), a branch of the National Institutes of Health (NIH) at https://www.ncbi.nlm.nih.gov/books/NBK492989/ will explain why:

“The decision of whether to reduce blood pressure levels in someone who has chronic kidney disease will depend on

  • how high their blood pressure is (when untreated),
  • whether they have diabetes, and
  • how much protein is in their urine (albumin level).

A person with normal blood pressure who doesn’t have diabetes and hardly has any albumin in their urine will be able to get by without using any blood-pressure-lowering medication. But people who have high blood pressure, diabetes or high levels of albumin in their urine are advised to have treatment with ACE inhibitors (angiotensin-converting enzyme inhibitors) or sartans (angiotensin receptor blockers). In people who have diabetes, blood-sugar-lowering medication is also important.”

When I was first diagnosed with pancreatic cancer early last month, it changed my medical priorities. With my nephrologist’s blessing, my primary focus was the cancer… not my kidneys. It took constant reminders to myself not to be so quick to say no to anything that I thought would harm my kidneys. In other words, to those things I’d been saying no to for the last 11 years.

For example, once diagnosed with CKD, I ate very little protein keeping to my five ounce daily limitation. Not anymore. Protein is needed to avoid muscle wasting during chemotherapy with a minimum requirement of eight ounces a day. I even tried roast beef and other red meats. After 11 years, they no longer agreed with me so I eat ground turkey, chicken, cheese, and am considering soy.

Another change: I preferred not to eat carbohydrates, but was warned not to lose weight if I could help it. All of a sudden I’m eating Goldfish, bread, and pasta. I can’t say that I’m enjoying them, but I am keeping my weight loss to a minimum. Other limitations like those on potassium and phosphorous have also gone by the wayside. I’ve eaten every childhood favorite, foods that I’ve avoided for the last 11 years, and anything that might look tempting in the last month, but none of them really taste that good. I like the foods on the renal diet now.

Oh, the only thing I have not increased is salt. My daughter takes me to my chemotherapy sessions. There’s a Jewish style restaurant across the street and we showed up early one day. I wanted to try a toasted bagel with butter, the way I ate it before CKD. The damned thing was salty! I hadn’t expected that.

Back to chemo and my kidneys. I admit it. I was nervous. What was this combination of poisons going to do to my kidneys? If it was so caustic that I had to have a port in place so that it wouldn’t be injected directly into my veins for fear of obliterating them, what about my kidneys?

I anxiously awaited my first Comprehensive Blood Panel, the blood test that includes your GFR. Oh, oh, oh! My kidney function had risen to 55 and my creatinine had lowered to 1.0. Let me explain just how good this was.

A GFR of 55 is the higher part of stage 3A. 60 is where stage 2 of CKD begins. My kidneys were functioning better on chemo. And the creatinine? Let’s get a quick definition of that first. According to The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/tests-diagnosis:

“Creatinine. Creatinine is a waste product from the normal breakdown of muscles in your body. Your kidneys remove creatinine from your blood. Providers use the amount of creatinine in your blood to estimate your GFR. As kidney disease gets worse, the level of creatinine goes up.”

Yet, mine went down. How? I asked and it was explained that all the hydration used to clear my veins of the caustic chemotherapy had worked this magic. I had two hours of hydration before the chemo-therapy  itself, two hours afterward, and another two hours the next day. My kidneys had never been this hydrated!

But wait, there’s more. I have diabetes. The pancreas is the organ that produces insulin. Could my diabetes be from the tumor blocking the production of insulin by my pancreas? I truly don’t know, but my glucose level is within the standard range for the first time since I’ve been diagnosed with diabetes.

Would I recommend chemotherapy to raise your GFR, and lower your creatinine and your glucose level? Of course not. But I am feeling so very lucky that my kidneys are not coming to any harm during the chemotherapy necessary to save my life. I can’t begin to tell you how relieved I am.

Until next week,

Keep living your life!

Pancreas + Kidneys = ?

31 years ago, my father died of pancreatic cancer. For some reason, I remember him asking me what electrolytes were as soon as he was diagnosed. I didn’t know. I do now, but I don’t know if there’s a connection between the pancreas and the kidneys. Of course, I mean other than the fact that they are all organs in your body.

Oh, sorry, I didn’t give you the definition. This is from Healthline at https://www.healthline.com/nutrition/electrolytes  :

“’Electrolyte’ is the umbrella term for particles that carry a positive or negative electric charge ….

In nutrition, the term refers to essential minerals found in your blood, sweat and urine.

When these minerals dissolve in a fluid, they form electrolytes — positive or negative ions used in metabolic processes.

Electrolytes found in your body include:

  • Sodium
  • Potassium
  • Chloride
  • Calcium
  • Magnesium
  • Phosphate
  • Bicarbonate

These electrolytes are required for various bodily processes, including proper nerve and muscle function, maintaining acid-base balance and keeping you hydrated.”

Ummm, you have Chronic Kidney Disease. These are the electrolytes you need to keep an eye on, especially sodium, potassium, and phosphate. But why did Dad ask me about them?

I plunged right in to find the answer and immediately found a journal article… on a pay site. Not being one to pay for what can be found for free (and is 30 years old, by the way), I decided to look for as much information on the pancreas as I could find and see what we could figure out together.

Let’s start at the beginning. According to the Sol Goldman Pancreatic Cancer Research Center of Johns Hopkins Medicine – Pathology at http://pathology.jhu.edu/pc/basicoverview1.php?area=ba:

“What is the pancreas?

The pancreas is a long flattened gland located deep in the belly (abdomen). Because the pancreas isn’t seen or felt in our day to day lives, most people don’t know as much about the pancreas as they do about other parts of their bodies. The pancreas is, however, a vital part of the digestive system and a critical controller of blood sugar levels.

Where is the pancreas?

The pancreas is located deep in the abdomen. Part of the pancreas is sandwiched between the stomach and the spine. The other part is nestled in the curve of the duodenum (first part of the small intestine). To visualize the position of the pancreas, try this: touch your right thumb and right ‘pinkie’ fingers together, keeping the other three fingers together and straight. Then, place your hand in the center of your belly just below your lower ribs with your fingers pointing to your left. Your hand will be the approximate shape and at the approximate level of your pancreas.”

I tried that. It’s not as easy as it sounds.

So now we sort of know what and where it is, but what does it do? No problem, Columbia University Irving Medical Center has just the info we need at http://columbiasurgery.org/pancreas/pancreas-and-its-functions:

“Exocrine Function:

The pancreas contains exocrine glands that produce enzymes important to digestion. These enzymes include trypsin and chymotrypsin to digest proteins; amylase for the digestion of carbohydrates; and lipase to break down fats. When food enters the stomach, these pancreatic juices are released into a system of ducts that culminate in the main pancreatic duct. The pancreatic duct joins the common bile duct to form the ampulla of Vater which is located at the first portion of the small intestine, called the duodenum. The common bile duct originates in the liver and the gallbladder and produces another important digestive juice called bile. The pancreatic juices and bile that are released into the duodenum, help the body to digest fats, carbohydrates, and proteins.

Endocrine Function:

The endocrine component of the pancreas consists of islet cells (islets of Langerhans) that create and release important hormones directly into the bloodstream. Two of the main pancreatic hormones are insulin, which acts to lower blood sugar, and glucagon, which acts to raise blood sugar. Maintaining proper blood sugar levels is crucial to the functioning of key organs including the brain, liver, and kidneys.”

The kidneys? Now it’s starting to make sense. We need whatever specific electrolyte balance our lab work tells us we need to keep our kidneys working in good stead and we need a well-functioning pancreas to regulate our blood sugars. Hmmm, diabetes is one of the two leading causes of CKD. It seems the pancreas controls diabetes since it creates insulin.

What could happen if the pancreas wasn’t doing its job, I wondered.  This is from the Mayo Clinic at https://www.mayoclinic.org/diseases-conditions/pancreatitis/symptoms-causes/syc-20360227,

“Pancreatitis [Me here: that’s an inflammation of the pancreas] can cause serious complications, including:

  • Pseudocyst. Acute pancreatitis can cause fluid and debris to collect in cystlike pockets in your pancreas. A large pseudocyst that ruptures can cause complications such as internal bleeding and infection.
  • Infection. Acute pancreatitis can make your pancreas vulnerable to bacteria and infection. Pancreatic infections are serious and require intensive treatment, such as surgery to remove the infected tissue.
  • Kidney failure. Acute pancreatitis may cause kidney failure, which can be treated with dialysis if the kidney failure is severe and persistent.
  • Breathing problems. Acute pancreatitis can cause chemical changes in your body that affect your lung function, causing the level of oxygen in your blood to fall to dangerously low levels.
  • Diabetes. Damage to insulin-producing cells in your pancreas from chronic pancreatitis can lead to diabetes, a disease that affects the way your body uses blood sugar.
  • Malnutrition. Both acute and chronic pancreatitis can cause your pancreas to produce fewer of the enzymes that are needed to break down and process nutrients from the food you eat. This can lead to malnutrition, diarrhea and weight loss, even though you may be eating the same foods or the same amount of food.
  • Pancreatic cancer. Long-standing inflammation in your pancreas caused by chronic pancreatitis is a risk factor for developing pancreatic cancer.

Did you catch kidney failure and diabetes? I believe we now know how the kidneys and pancreas are related to each other. Ah, if only I’d known how to research 31 years ago….

Until next week,

Keep living your life!