Compliance 101

Welcome to the last blog of National Kidney Month 2018. We all know I rarely write about dialysis or transplant, but a friend who is awaiting a transplant brought this book to my attention. This particular section of the book sparked my interest since non-compliance can be an issue in any stage of kidney disease. One part of my mission is to create awareness among Chronic Kidney Disease patients, their friends, families, and loved ones of how important compliance with their medical team is. Dr. Michael B. Fisher is a nephrologist who thinks the same way.

Today’s blog is mostly an excerpt from the upcoming book Surviving Kidney Disease. According to his book’s web page:

“Dr. Fisher received his medical degree from SUNY in 1968 and did his nephrology fellowship at UCLA in 1972. He has been the Medical Director of Acute Dialysis at Santa Barbara Cottage Hospital from 1984 to present. He has done 131 teaching lectures at this hospital including topics such as management of malignant hypertension, renal management of toxic shock syndrome, and NSAID drug-induced renal failure. Dr. Fisher was voted by the medical residents the outstanding teacher of the year on 1988. He is active in promoting well-being among renal patients and educating them on care options.”

Dr. Fisher, the floor (er, keyboard) is yours:

“Each patient is unique. A teenager will have different issues than a professor in his fifties, or an elderly diabetic lady whose understanding of English is limited. Therefore, the only effective way to deal with non-compliance is to understand the issues that will interfere with the learning curve for a patient and then customize the lesson plan for the specific needs. The goal is to prevent major non-compliance by initiating a program of education where the patient and family learn why it is critical to make the sacrifice and are motivated to follow doctor’s orders.

The patient will gradually feel better over time after just having started dialysis and that is when the teaching really begins. If the patient is a transplant candidate, discussion of how to get a kidney is uplifting and sets the stage for the need to follow the prescription, no matter how difficult.

The truth is this is a difficult challenge because of the complex nature of kidney disease and the human mind.  I have found that by immediately presenting the possibility for a kidney transplant while also explaining why the need for a strict diet and appropriate fluid restriction, people begin to see a way out of their predicament, spirits soar, and their inner source of strength takes over.  Hope inspires people to find the how to overcome the most daunting challenges.

Here is a synopsis of a recent patient care meeting with a 22 year -old, father of 2 who has been on hemodialysis for 5 years. He is on the transplant list and could be called at any time. If he were called tomorrow, he would be rejected because his parathyroid hormone level (PTH) is ten times above the target number.

He appeared at a patient care meeting, attended by our full staff. When we reminded him that his PTH level was 2000 and that we had been aiming for 200 he was unfazed. Then I explained to him again that even though he felt well, at any time he might suffer from severe bone pain from a disease which is silent even though it is damaging the bones and every organ system. I discovered that he works five days a week despite having dialysis treatments three times in a week. His mother-in-law prepares his lunch every day which consists of a half of a chicken which provides high quality protein and with it an enormous amount of phosphorus. He also failed to take a drug called Sensipar which lowers PTH.

He has felt well, looks muscular, and rather healthy, so in his mind why fix it if it doesn’t seem broken?  I must have finally reached him when I told him what likely happening to his bones and other organs. The most powerful argument that I presented was that he was so close to being called for a kidney transplant, his ticket to a normal life, one where he could eat and drink that things he loved the most.

The bell rang in his mind. He asked questions, took notes, made an appointment to see me to further discuss kidney transplant, his diet and medicines. The social worker connected with him as did the dietician who was going to talk to the mother-in-law about reducing phosphorus in the diet and placing his pills in an organizer. He left with more knowledge and hope that if he talk (sic) ownership of his diet, he would soon receive that kidney transplant that would change his life forever.”

When I was a high school English teacher in New York City a million years ago – or so it seems – my feeling was that you have to meet the student at whatever level they are and start their education from there. I carried that feeling with me into my CKD Awareness Advocacy. It seems Dr. Fisher does, too. As CKD patients, we are each unique.

That’s one of the many and varied reasons I cover so many different topics and often revisit a topic several years later. Just as with my high school students, CKD patients may not be ready to hear medical advances or suggestions to make living with CKD easier the first, second, third, or even 99th time they hear – or read – it. They may gloss over it when it’s presented one way, but glom onto it when presented another.

Just in case you’re wondering how Dr. Fisher knows what a patient feels like, this is from his website at http://www.michaelfishermd.com/:

“I suddenly became a patient myself and came face-to-face with the idea that I was no longer a part of the ‘temporarily healthy.’ Walking in the slippers of my patients allowed me to more fully understand the challenges they faced and the courage that they found to overcome them….”

Although not a renal patient, he could see for himself just how brave you need to be to listen, to comply, to ask questions, to make suggestions as a patient who is probably scared out of your mind with your diagnose to begin with.

Here’s to all of us: the nephrologists, renal nutritionists, phlebotomists, schedulers, and the patients themselves. May this be your month for learning all you can about Chronic Kidney Disease.

Until next week,

Keep living your life!

Just a Little Bit Pregnant

We are in Dayton, Ohio, right now and have attended the surprise baby shower for one of my daughters. Wow, just wow! Every other phrase from the guests’ lips was baby this or baby that… and rightly so. It was a baby shower, for goodness’ sake. I loved the oohing and aahing, the happy tears, the stories about when the mom and dad to be were babies themselves. I loved seeing how excited the parents to be were and how thrilled we all were for them.

Yep, I got to thinking. Is it the same for those pregnant moms with CKD? When I first started writing about Chronic Kidney Disease back in 2010, this was included in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“Pregnancy is risky for women with CKD. The risks for both the mother and fetus are high as is the risk of complications.  You’ll need to carefully discuss this with your nephrologist and your gynecologist should you absolutely, positively want to bear a child rather than adopt.”

How dismal. And how outdated. Eight years can make one heck of a lot of difference in the medical field.

The National Kidney Foundation at https://www.kidney.org/atoz/content/pregnancy has information which is far more recent so I’m going to turn this week’s blog over to them for a while:

“A new baby is a joy for any family. But pregnancy can put a lot of stress on your body. If you have kidney disease or kidney failure, it can put you and the health of your unborn child at risk.

Are you thinking about pregnancy? If so, you should discuss it beforehand with your doctor or other healthcare provider. They know you, and they can help you make a decision that is based on your own personal health. There are many things to consider. You and your doctor should discuss them all very carefully. Some things that can affect a healthy pregnancy include:

  • Your stage of kidney disease
  • Your general health
  • Your age
  • Having high blood pressure, diabetes, or heart disease
  • Having other serious health conditions
  • Protein in your urine

Here are a few brief answers to some common questions about kidney disease and pregnancy.

Can a woman with “mild” kidney disease have a baby?

That depends. There is good evidence to suggest that women with very mild kidney disease (stages 1-2), normal blood pressure, and little or no protein in the urine (called “proteinuria”) can have a healthy pregnancy. What is proteinuria? It’s a sign of kidney damage. Your body needs protein. But it should be in your blood, not your urine. Having protein in your urine usually means that your kidneys cannot filter your blood well and the protein is leaking out.

In women with moderate to severe kidney disease (stages 3-5), the risk of complications is much greater. For some women, the risk to mother and child is high enough that they should consider avoiding pregnancy.

If you are thinking of becoming pregnant, ask your doctor or other healthcare provider about your stage of kidney disease, your risk for complications, your degree of proteinuria, and any other health conditions you may have.

Can a woman who is on dialysis have a baby?

Some changes in your body make it hard to become pregnant. For example, most women on dialysis have anemia (a low red blood cell count) and hormone changes. This may keep them from having regular menstrual periods.

Women with kidney failure are usually advised against becoming pregnant. The rate of complications is very high. Risks to both the mother and developing baby are high. If you are thinking of becoming pregnant, talk to your healthcare provider. If you become pregnant, you will need close medical supervision, changes in medicine, and more dialysis to have a healthy baby.

Can a woman who has a kidney transplant have a baby?

Yes. If you have a kidney transplant, you are likely to have regular menstrual periods and good general health. Therefore, getting pregnant and having a child is possible. But you should not become pregnant for at least one year after your transplant, even with stable kidney function. Some medicines that you take after a kidney transplant can cause problems to a developing baby. In some cases, pregnancy may not be recommended because there is a high risk to you or the baby. Another reason is if there is a risk of losing the transplant.

Talk with your healthcare provider if you have a transplant and are thinking about getting pregnant. Your healthcare provider may need to change your medications so that it is safe for you to become pregnant. It is very important to use birth control until you and your healthcare provider have agreed that it is safe for you to become pregnant.”

There is even more information at the URL for this article. What I found encouraging is that for each stage of kidney disease – chronic, dialysis, transplant – there is hope. I see the cautions, I know it means extra care and extra work, but it is possible. Nowhere did I read that pregnancy is not for those with CKD.

By the way, I didn’t develop CKD until my youngest was in her twenties and my doctor still had to take my general health, age, and if I had high blood pressure, diabetes, heart disease, or other serious health conditions into account.

The baby whose shower we attended is our first grandchild. When I was diagnosed with CKD a decade ago, I doubted I would live to see this day… and that had nothing to do with the fact that I had just met the man who was to be my husband and hadn’t yet met his daughter who will be this baby’s mother.

My point here is that I’ve learned so much about keeping my CKD under control and it’s pretty much been through asking questions and working with my nephrologist, as well as researching. And now I’m urging you to learn as much as you can if you’d like to have a baby. Well, in general too, but today’s blog is about pregnancy.

Until next week,

Keep living your life!

Taming the Wild Weed

I know someone who is a kidney donor. That’s actually how we met. I went to a conference to learn what I could learn and she was there at the invitation of the presenters. I was drawn to her right away not knowing who she was or why she was there… something about her magnetic personality, I think. That was years ago and since then I’ve attended her social media workshop and followed her closely on Instagram. Now she’s involved with medical marijuana. That got me to thinking.

So I did a little searching. Back in 2013, the National Kidney Foundation answered a reader’s question in their Ask the Doctor blog by responding more to the smoking than the marijuana:
“Smoking is not good for any person. Smoking is not safe for any person. I know of no specific ill effects of marijuana on the kidney.”

It seemed to me something must have been discovered about medical marijuana and chronic kidney disease in the last four years, so I kept digging and found this 2014 article from Phoenix New Times at http://www.phoenixnewtimes.com/arts/can-i-get-a-medical-marijuana-card-for-chronic-kidney-disease-6577499:

“Medical-grade cannabis can help with pain management, but there are still alternating schools of thought as to whether weed helps or hurts the kidneys. Claims that marijuana injures the kidneys often point to smoking as a damaging factor, but there are alternative methods of ingesting cannabis, including vaporizing, tinctures, and infusing the drug into food.

Additionally, a joint study by the University of Calgary and the University of Alberta concluded that, ‘Even small improvements in symptoms with the use of THC: CBD [cannabinoids, the active ingredients in cannabis] in patients with difficult-to-treat symptoms may be clinically meaningful.’

It seems, if you avoid smoking it, much more evidence exists that cannabis can help with the side effects of CRD, including nausea, loss of appetite, and weight loss.”

CRD means Chronic Renal Disease, an alternative name for CKD.

Well, that’s a bit more informative, but still, three years old. By now I was curious to know how marijuana worked in the first place. United Patients Group at https://unitedpatientsgroup.com/resources/how-medical-marijuana-works had the answer and the date on their site was only last year.

“Major Cannabinoids in Medical Marijuana

What THC Is and Its Effects

THC stands for delta-9-tetrahydrocannibinol. It is probably the best known cannabinoid present in medical marijuana. Physically it acts as a muscle relaxant and anti-inflammatory and psychologically it acts as a stimulant. This makes medical marijuana strains high in THC a good choice for patients who need relief while also to remain alert and active.

THC in medical marijuana acts in the following ways:
• anti-epileptic
• anti-inflammatory
• anti-depressant
• stimulates appetite
• lowers blood pressure
• apoptosis (self induced cell death)

What CBD Is and Its Effects

CBD stands for cannabidiol. Cannabidiol actually reduces the psychological effects of medical marijuana. For most patients, a strain that has high THC and high cannabidiol will have fewer “mental” effects and more physical ones. High cannabidiol medical marijuana strains, like Blueberry and Harlequin, are especially effective for illnesses with strong physical symptoms.

Cannabidiol’s effects include:
• reduced pain
• reduced anxiety
• reduced nausea
• sedative effects
• anti-convulsive
• anti-schizophrenic
• arrests the spread of cancer

What CBN Is and Its Effects

CBN is cannabinol, not to be confused with Cannabidiol. Cannabinol is very similar to THC, but has less psychological effects. It is produced as THC breaks down within the medical marijuana plant. High THC will make cannabinol’s effects stronger, and very high cannabinol concentrations can produce undesirably strong head highs.

Cannabinol levels tend to be high in medical marijuana strains like Strawberry Haze and Blue Rhino, which can be particularly helpful for:
• lowering pressure in the eye (such as with glaucoma)
• analgesic
• anti-seizure

What CBC Is and Its Effects

CBC stands for cannabichromene. Cannabichromene’s main action is to enhance the effects of THC. High cannabichromene levels will make a high-THC medical marijuana strain much more potent.

Cannabichromene working together with THC is known to be a:
• sedative
• analgesic
• anti-inflammatory

What CBG Is and Its Effects

CBG is an abbreviation for cannabigerol. Cannabigerol has no psychological effects on its own, and is not usually found in high amounts in most medical marijuana. Scientists believe that cannabigerol is actually one of the oldest forms of cannabinoids, meaning it is essentially a “parent” to the other cannabinoids found in medical marijuana. It also has anti-microbial properties.

Cannabigerol has physical effects such as:
• lowering pressure in the eye
• anti-inflammatory
• sedative
• sleep assistance

Combining Strains

Alone, none of the five major cannabinoids are as effective as when they work together. These five cannabinoids also work with the minor compounds in marijuana, and this is probably one reason that medical marijuana replacements like Marinol do not work very well.

Professional medical marijuana growers can analyze their medical marijuana strains to breed and grow medication for patients with the desired range of levels of each major cannabinoid. Using this knowledge of what each compound does helps medical marijuana pharmacists, or budtenders, find the right combination for patients to treat specific conditions and find maximum relief.”

I am not at a point where I would consider medical marijuana since my only symptoms are occasional brain fog and tiredness. Should I be experiencing the kind of pain some CKD users do, I would revisit this decision but I’d have to keep in mind that using this substance could hurt my chances of a transplant.

According to Joshua L. Rein, DO and Christina M. Wyatt, MD of the Division of Nephrology, Department of Medicine, Icahn School of Medicine at Mount Sinai, New York, NY as stated in their research study at http://www.ajkd.org/article/S0272-6386(17)30810-7/, as of this year:

“Twenty-nine US states have established medical marijuana programs, 8 of which have also legalized recreational marijuana, and Canada is expected to legalize recreational marijuana in 2018. Advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) are chronic conditions with significant associated morbidity and mortality.”

Don’t get confused. Medical marijuana is not a cure for CKD and is not suggested as one. However, should you have need of pain relief, it may offer you some… IF you live in a place where it is legal and IF your doctor thinks it’s a good option for you.

Until next week,
Keep living your life!

Memories of Another Sort

When I was teaching Creative Non-Fiction at Phoenix College, I got into the habit of taking my classes to The Poisoned Pen, an award winning independent book store here in Arizona. I wanted them to hear well known authors talk about their writing process and see that these people were human beings just as they, my students, were. I retired from teaching several years ago, but I still go to writers’ workshops at the Pen. Last time I was there, I stumbled upon an advance copy of a book by Lisa Stone.

What’s an advance copy? It means either Advance Reading Copy of Advance Review Copy – depending upon who you talk to and is abbreviated ARC. TCK Publishing at https://www.tckpublishing.com/advance-review-copies/ informs us:

“Big traditional publishers often print thousands of ARC copies to send out to trade reviewers, bloggers, booksellers, librarians, and other people who can generate word of mouth for the book. In today’s technological environment, digital ARCs are gaining rapidly in popularity, sent out in email blasts and through various online services. ARCs are also used in giveaways and contests to give ordinary readers early access to books in an effort to build buzz.”

Lisa Stone, the author of the ARC of The Darkness Within (the one I picked up), is the nom de plume of Kathy Glass. She’s a bestselling British author who wrote about cellular memory – alternately called cellular memory phenomenon – after organ transplant. I was transfixed. We all know I rarely write about transplantation, but today I am. Here’s a reminder from SlowItDownCKD 2015 as to just what that is:

“WebMD at http://www.webmd.com/a-to-z-guides/kidney-transplant-20666 tells us:

‘A kidney transplant is surgery to replace your own diseased kidneys with a healthy (donor) kidney.’

I should mention that while there are transplants from both living and cadaver donors, both will require lifelong drugs to prevent rejection. “

Now for the biggie: what is cellular memory? According to Medical Daily at http://www.medicaldaily.com/can-organ-transplant-change-recipients-personality-cell-memory-theory-affirms-yes-247498:

“The behaviors and emotions acquired by the recipient from the original donor are due to the combinatorial memories stored in the neurons of the organ donated. Heart transplants are said to be the most susceptible to cell memory where organ transplant recipients experienced a change of heart.”

Lisa Stone’s protagonist had a heart transplant and his personality became that of his donor. Far fetched? Maybe.

But what about the case of Demi-Lee Brennan, the Australian young lady who had a liver transplant that changed her blood type and immune system back in 2008? The Sydney Morning Herald at http://www.smh.com.au/news/national/transplant-girls-blood-change-a-miracle/2008/01/24/1201157559928.html included this quote from one of her doctors.

“We didn’t believe this at first. We thought it was too strange to be true,” Dr Alexander said. ‘Normally the body’s own immune system rejects any cells that are transplanted … but for some reason the cells that came from the donor’s liver seemed to survive better than Demi-Lee’s own cells. It has huge implications for the future of organ transplants.’”

And those who have received kidney transplants? Is there anything to report about cellular memory there? I turned to the Daily Mail, a British newspaper, at http://www.dailymail.co.uk/health/article-533830/My-personality-changed-kidney-transplant–I-started-read-Jane-Austen-Dostoevsky-instead-celebrity-trash.html#ixzz4t3Ml4sAt and found this:

“’A spokesman for UK Transplant said: ‘While we are aware of the suggestion that transplant recipients take on aspects of the personality of the organ donor, we are not aware of any evidence to support it.

While not discarding it entirely, we have no reason to believe that it happens. We would be interested to see any definitive evidence that supports it.’

Examples cited as proof of cellular memory include a U.S. woman terrified of heights who became a climber and a seven-year-old girl who had nightmares about being killed after being given the heart of a murdered child.”

The Liberty Voice, a publication that is new to me and seems to be part of The Guardian, at http://guardianlv.com/2013/06/organ-transplants-cellular-memory-proves-major-organs-have-self-contained-brains/ had the sort of background information I was looking for:

“In our modern culture, cellular memory was first studied in heart transplant recipients when the patients displayed strange cravings, change in tastes, cravings and mild personality. Major organs like the heart, liver, kidney, and even muscles are known to contain large populations of neural networks, which are self-contained brains and produce noticeable changes. Acquired combinatorial memories in organ transplants could enable transferred organs to respond to patterns familiar to the organ donors, and it may be triggered by emotional signals. Science discovered evidence that nervous system organs store memories and respond to places, events, and people recognized by their donors.

Gary Schwartz has documented the cases of 74 patients, 23 of whom were heart transplant recipients. Transfers of memories have not been reported in simpler transplants like corneas because they don’t contain large population of neurons. Dr. Andrew Armour a pioneer in neurocardiology suggests that the brain has two-way communication links with the “little brain in the heart.” The intelligence of neural brains in organs depends on memories stored in nerve cells.”
You can find the Schwartz study at http://www.newdualism.org/nde-papers/Pearsall/Pearsall-Journal%20of%20Near-Death%20Studies_2002-20-191-206.pdf.

Since I didn’t know the publication, I checked on some of the contributors…especially since the documentation was on such a small population. Well, will you look at that; Gary Schwartz is a local teaching at The University of Arizona. This is his faculty entry at http://neurology.arizona.edu/gary-e-schwartz-phd  

“Dr. Schwartz is Professor of Psychology, Medicine, Neurology, Psychiatry and Surgery. He is the Director of the Laboratory for Advances in Consciousness and Health (LACH, formerly the Human Energy Systems Laboratory). After receiving his doctorate from Harvard University, he served as a professor of psychology and psychiatry at Yale University, director of the Yale Psychophysiology Center, and co-director of the Yale Behavioral Medicine Clinic. Dr. Schwartz has published more than four hundred scientific papers, edited eleven academic books, is the author of several books including The Afterlife Experiments, The Truth About Medium, The G.O.D. Experiments, and The Energy Healing Experiments.”

As for Dr. Armour, his full name seems to be Dr. John Andrew Amour. I found a host of books he’s edited or written and conferences where he’s spoken.

I’m convinced cellular memory exists. I leave it up to you if you can – or even want to – accept this theory.

Until next week,
Keep living your life!