There’s Always the Exception

And this is one of them. We all know I don’t write about dialysis, but I’ve been receiving bunches of emails lately asking if I would consider including this product, that book, or the other social media kidney disease awareness item. My response is usually thank you, but I don’t allow advertising or product promotion on the blog. When Dr. Bruce Greenfield, a Los Angeles nephrologist with 37 years experience, sent me a link to his dialysis rap with the following message, I was forced to think twice: “My goal is to reach every dialysis patient in America, in part to make people more informed, in part to shed a little light into their world in a fun way, and of course- to make them smile!”

But why? Are smiles and laughter necessary in the treatment of illness? According to Dr. Jordan Knox, a resident in family medicine, they are. This is how he summarized the need for physicians to use humor in his essay on KevinMD.com at http://www.kevinmd.com/blog/2017/10/theres-place-humor-medicine.html last Friday: “Patch Adams, MD is one of the best-known physicians to use humor in healing. He focuses more on silliness to reach pure joy, nourishing the soul as much as the body. There is something about the contrast, when silliness uproots the expectation of seriousness, that is more powerful than pure humor alone. I think that’s why humor can be so powerful in the doctor’s office; because the expectation is all business, seriousness, and authority. Humor can break down those rigid roles of “patient” and “doctor,” or “team leader” and “team member.” It can level the playing field and align people on the same side, working toward a shared goal.”

Being a Groucho Marx fan, I keep thinking of his one liner, “A clown is like an aspirin, only he works twice as fast.” Hey, CKD patients can’t take aspirin (if they’re NSAIDS or nonsteroidal anti-inflammatory drugs), so why not take humor instead?

But what happens to us physically when we laugh? I checked in with my old standby, The Mayo Clinic, at https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-relief/art-20044456?pg=1 and found the following information about laughter and your body.

Short-term benefits

Laughter can:

Stimulate many organs. Laughter enhances your intake of oxygen-rich air, stimulates your heart, lungs and muscles, and increases the endorphins that are released by your brain.

Activate and relieve your stress response. A rollicking laugh fires up and then cools down your stress response, and it can increase your heart rate and blood pressure. The result? A good, relaxed feeling.

Soothe tension. Laughter can also stimulate circulation and aid muscle relaxation, both of which can help reduce some of the physical symptoms of stress.

Keep in mind that I am not a dialysis patient but hope that this rap is helpful to those who are. Sit back, turn up the speakers, and have some short term benefits courtesy of Dr. Greenfield.

I laughed… and I learned, but I was really interested in the effects of laughter that could help Chronic Kidney Disease patients in the early and moderate stages. WebMD at https://www.webmd.com/balance/features/give-your-body-boost-with-laughter#2 had a bit more information about that. Mind you, these results are observational or the results of very small studies.

Blood flow. Researchers at the University of Maryland studied the effects on blood vessels when people were shown either comedies or dramas. After the screening, the blood vessels of the group who watched the comedy behaved normally — expanding and contracting easily. But the blood vessels in people who watched the drama tended to tense up, restricting blood flow.

Immune response. Increased stress is associated with decreased immune system response, says Provine. (He’s a professor of psychology and neuroscience at the University of Maryland, Baltimore County and author of Laughter: A Scientific Investigation.) Some studies have shown that the ability to use humor may raise the level of infection-fighting antibodies in the body and boost the levels of immune cells, as well.

Blood sugar levels. One study of 19 people with diabetes looked at the effects of laughter on blood sugar levels. After eating, the group attended a tedious lecture. On the next day, the group ate the same meal and then watched a comedy. After the comedy, the group had lower blood sugar levels than they did after the lecture.

Reminder: Diabetes is the number one cause of CKD. CKD means a compromised immune system. Healthy blood flow is necessary for healthy kidneys.

Tomorrow is Halloween (Happy birthday to my brother Paul!), so I wanted to try my hand at some macabre humor.

 

Obituary –

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 died peacefully on October 20th, 2017, on Amazon.com and B & N.com at the age of three. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 is survived by SlowItDownCKD 2011 & SlowItDownCKD 2012, which were both born of a need for larger print, more comprehensive indexes, and a less wieldy book to hold. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 was preceded by What Is It and How Did I Get It? Early Stage Chronic Kidney DiseaseThe Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 gave birth to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, SlowItDownCKD 2015 and SlowItDownCKD 2016. Flowers and condolences in the form of Chronic Kidney Disease Awareness may be sent to any and all vehicles for spreading awareness of this disease.

Researching laughter and CKD led to only laughter and dialysis sites. I wasn’t satisfied with that and kept looking only to find this generalized, but easily understood, image from The Huffington Post Partners at .

I don’t think we can forget that anything that’s good for your heart will benefit the kidneys. Since CKD is an inflammatory disease, reducing inflammation of any kind in the body can only be a good thing. Look at that! Both bad cholesterol and systolic blood will be lowered. These are all kidney related. Hypertension is the second most common cause of CKD. Cholesterol makes the heart work harder, which can raise your blood pressure. Uh-oh.

Another thing I realized is that if I find something wrong, you know like the termite invasion or the a/c breaking in 100 degree weather, my first response is laughter. I never knew why. Hmmm, maybe I’ve been protecting my body all along.

Until next week,

Keep living your life!

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Not a Drug, a Medical Food

On a Facebook Chronic Kidney Disease support page, I mentioned that I use a medical food to help with my osteoarthritis. And then the questions started flying. Those of us who would prefer no more Rx drugs seemed the most interested. I already take Rx drugs for both hyperlipidemia and hypertension. I didn’t want to add yet another Rx drug that may have side effects. This is a lot safer for my poor little kidneys.

Let’s start at the beginning with a definition. According to the Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Medical+food, a medical food is:
A food formulated by the selective use of nutrients and manufactured for the dietary treatment of a specific condition or disease

I am not referring to dietary supplements here, but rather a replacement for a drug that can be prescribed for a specific disease. In my case, it’s osteoarthritis. CoverMyMedicalFoods.com explains that:

Medical foods are prescription medicines made from natural molecules found in food.

One pill can equal natural ingredients found in five pounds of fruits and vegetables.

Purified, natural ingredients equal fewer side effects.

Large amounts of these purified molecules help the body fight disease.

Unlike dietary supplements or Rx drugs, the ingredients are designated G.R.A.S. “Generally Recognized as Safe,” which is the highest standard of safety at the FDA.

Also unlike dietary supplements or Rx drugs, medical foods are intended for a disease or condition that has distinctive nutritional requirements.

Like Rx drugs, but unlike dietary supplements, they must be supervised by a physician and dispensed by prescription. (My rheumatologist performs this task for me.)

Pharmacist Gayle Nicholas Scott explains The Federal Food and Drug Administration’s (FDA) rules for medical foods on Medscape at https://www.medscape.com/viewarticle/744036.

The FDA specifies that medical foods are foods specifically formulated for dietary management of diseases or conditions with distinctive nutritional needs that cannot be met by diet alone. Generally, a product must meet the following criteria to be labeled a “medical food”:
• A specific formulation (as opposed to a naturally occurring foodstuff in its natural state) for oral or tube feeding;
• Labeled for the dietary management of a specific medical disorder, disease, or condition with distinctive nutritional requirements;
• Intended for use under medical supervision; and
• Intended only for a patient receiving active and ongoing medical supervision for a condition requiring medical care on a recurring basis so that instructions on the use of the medical food can be provided.

This is all getting a bit technical so I decided to go to my medical food’s website for an example. I take Limbrel. This is from their website (as mentioned) at http://www.limbrel.com/hcp-medical-food.php.

Limbrel is a prescription medical food product for the daily nutritional management of the metabolic aspects of osteoarthritis. Limbrel is not a drug, nor a dietary supplement. Because Limbrel is a Medical Food (MF) product, we are required to describe it differently from how a drug or dietary supplement is described.

By statutory and regulatory definition, product claims must be explicitly different for medical food products versus drugs versus dietary supplements. Generally, Medical Food claims reference the “dietary management” or “distinctive nutritional requirements” of a particular disease or the metabolic processes of that disease, whereas drug claims reference “curing, treating, preventing or mitigating” the effects or symptoms of a particular disease, while dietary supplement claims reference “supporting” healthy function of the body or particular body organ or system.

First, osteoarthritis patients are shown to have distinctive nutritional requirements and metabolic imbalances. Then, for example, a Medical Food may claim the dietary management of metabolic processes of osteoarthritis, whereas a drug may claim the reduction of osteoarthritis pain, while a dietary supplement may claim the support of overall health of joints. A Medical Food must meet the distinctive nutritional requirements of a disease through dietary management, whereas a drug may address the symptoms of a disease or its treatment or prevention of the disease.

Claims for both MFs and drugs must be supported by solid laboratory and clinical data. But, by contrast, for a drug, the safety of the product and both the therapeutic claims and the ingredients must be pre-approved by the FDA through extensive clinical testing. MFs have up-front safety obtained through GRAS (Generally Recognized As Safe) status of the ingredients, including use of the food or food additive or component in perhaps millions of people, whereas drugs have unproven safety that must first be shown in animals and then be tested in human clinical trials, which typically exclude wider populations with various health problems. Medical Food ingredients have GRAS designation, the highest FDA standard of safety given to food. Most MFs are also tested in clinical trials to confirm their “traditional use” safety.

The use of Medical Food, regulated by the FDA, represents an entirely different approach to managing diseases. For example, unlike drugs, Limbrel does not treat or mask the symptoms of osteoarthritis. Instead, Limbrel manages the underlying metabolic processes of osteoarthritis to restore the proper metabolic balance of inflammatory metabolites at the cellular level, and thereby promotes normal physiologic function.

A little reminder is in order here: metabolic has to do with your metabolism. The Merriam Webster Dictionary at https://www.merriam-webster.com/dictionary/metabolism defines that as
a: the sum of the processes in the buildup and destruction of protoplasm; specifically: the chemical changes in living cells by which energy is provided for vital processes and activities and new material is assimilated…
• Regular exercise can help to increase your metabolism.
b: the sum of the processes by which a particular substance is handled in the living body
c: the sum of the metabolic activities taking place in a particular environment
• the metabolism of a lake

I believe it’s the second definition that concerns us here.

 

What I can say for certain is that, at one point, I doubted it was worth the $50 a month to pay for this medical food so I stopped it. That was a mistake. In retrospect, it seemed that my body’s reaction to stopping was instantaneous… which I doubt is possible. But my elbows started to hurt too much, so I got my prescription. While I may feel some aches and pains on those rare rainy Arizona days, I am relatively pain free the rest of the time.

Until next week,
Keep living your life!

Sex?

I know, I know. When you see that question on an application, you want to answer ‘yes,’ but you’re only given the choice of male or female. Well, at least that’s my experience. Okay, got that out of the way.

Way back in 2011, the following was included in my first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This was way before the website, Facebook page, the blog, the Instagram, Pinterest, Twitter, and LinkedIn accounts. Way before the articles, radio shows, and interviews, book signings, and talks about CKD. Come to think of it, this was way before SlowItDownCKD was born.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate. Usually, these problems start with an inability to keep an erection as long as usual. The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body. Or maybe it’s leaky blood vessels. Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones….

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety. But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes….

Women with CKD may also suffer from sexual problems, but the causes can be complicated. As with men, renal disease, diabetes and hypertension may contribute to the problem. But so can poor body image, low self-esteem, depression, stress and sexual abuse. Any chronic disease can make a man or a woman feel less sexual….

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed….

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too. And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful….

Well, what’s changed since I was writing What Is It and How Did I Get It? Early Stage Chronic Kidney Disease? in 2010?

The National Kidney Foundation at https://www.kidney.org/atoz/content/sexuality now includes the following on their website:

It’s important to remember that people with kidney failure can have healthy marriages and meaningful relationships. They can fall in love, care for families, and be sexual. Staying intimate with those you love is important. It’s something everyone needs.

Many people think that sexuality refers only to sexual intercourse. But sexuality includes many things, like touching, hugging, or kissing. It includes how you feel about yourself, how well you communicate, and how willing you are to be close to someone else.

There are many things that can affect your sexuality if you have kidney disease or kidney failure — hormones, nerves, energy levels, even medicine. But there are also things you and your healthcare team can do to deal with these changes. Don’t be afraid to ask questions or get help from a healthcare professional.

DaVita at https://www.davita.com/kidney-disease/overview/living-with-ckd/sexuality-and-chronic-kidney-disease/e/4895 also offers advice:

Once again, it’s important to remember, you are not alone.

There are no limits with regard to sexual activities you may engage in as a patient with renal disease, as long as activity does not place pressure or tension on the access site, causing damage. (Me: This is for advanced CKD.)

If you are sexually active, practicing safe sex and/or using birth control are needed, even if you think you may be physically unable to have children.

Activities such as touching, hugging and kissing provide feelings of warmth and closeness even if intercourse is not involved. Professional sex therapists can recommend alternative methods as well.

Keeping an open mind and having a positive attitude about yourself and your sexuality may lower the chances of having sexual problems.

There are both medical and emotional causes for sexual dysfunction. The reason for your dysfunction can be determined through a thorough physical exam in addition to an assessment of your emotional welfare and coping skills.

Relaxation techniques, physical exercise, writing in a journal and talking to your social worker or a therapist can help you to feel better about your body image and/or sexual dysfunction.

Resuming previous activities, such as dining out or traveling, as a couple or single adult, can be helpful.

Provide tokens of affection or simple acts of kindness to show you care.

Communicate with your partner or others about how you feel.

According to the Kidney Foundation of Canada at file:///C:/Users/Owner/AppData/Local/Packages/Microsoft.MicrosoftEdge_8wekyb3d8bbwe/TempState/Downloads/Sexuality%20and%20CKD.pdf, these may be the causes of sexual problems in CKD.

Fatigue is a major factor. Any chronic illness is tiring, and chronic kidney disease, which is often accompanied by anemia and a demanding treatment, practically guarantees fatigue.

Depression is another common issue. Almost everyone experiences periods of depression, and one of the symptoms of depression is loss of interest in sexual intimacy.

Medications can also affect one’s ability or desire to have intercourse. Since there may be other medications which are just as effective without the side effect of loss of sexual function or desire, talk to your doctor about your pills.

Feelings about body image Having a peritoneal catheter, or a fistula or graft, may cause some people to avoid physical contact for fear of feeling less attractive or worrying about what people think when they look at them. (Me: Again, this is for late stage CKD.)

Some diseases, such as vascular disease and diabetes, can lead to decreased blood flow in the genital area, decreased sexual desire, vaginal dryness and impotence.

It looks like the information about CKD and sexuality hasn’t changed that much, but it does seem to be more available these days.

Until next week,
Keep living your life!

Book It!

Every once in a great while, I’ll come across a Chronic Kidney Disease book that I want to share. I think there were only three or four of these in the last six years. Today, I add another one. Dr. Kang, the author, is a local doctor. That was the first thing that caught my eye.

I thought I would be reading the usual information … and I did, but it was written with verve and included some information I hadn’t known. So I did the obvious. I contacted the good doctor to see if he’d be interested in sharing his knowledge with us on the blog. I’m so very glad he agreed.

Dr. Mandip S.Kang, is not only a senior partner in Southwest Kidney Institute right here in Phoenix, but he is also a Fellow in the American Society of Nephrologists I like so much. Just last week, I gleefully accepted their invitation to join the Twitter chat (#AskASN) about staging in CKD and often refer to them in both my blogs and books. He is also the author of the IBPA Gold Award winning book: The Doctor’s Kidney Diets……A Nutritional Guide to Managing and Slowing The Progression of Chronic Kidney Disease, the book that caught my eye.

This is what he wrote for us:

Receiving a diagnosis of kidney disease is not a death sentence for patients, but is often overwhelming and a life changing event. Patients are often confused and the information they receive from different healthcare providers may not be the same. Patients often ask, “What should I do?”

Having experience as a former Assistant Clinical Professor of Medicine at University of Utah School of Medicine and currently as a Senior Nephrologist (kidney specialist), I have gained some insight into how to alleviate my patients’ fears and I have come up with a four point plan that I try to teach my kidney patients. I believe that the role of the physician is to be a teacher and a coach as patients navigate their way into the complexities of a Chronic Kidney Disease diagnosis. I believe that every kidney specialist should have a chalk board in the patient exam rooms and lay out the plan for his or her approach to their patients just like we were taught in schools.

Here is a four point plan that all kidney patients should remember as they visit their kidney specialists and at home. The acronym for the plan is very simple: D.A.M.E.

1. ‘D’ in the acronym stands for diet. The reason I chose diet first comes from the Chinese wisdom in treating any disease: ‘He that takes medicine and neglects diet, wastes the skills of the physician.’ Patients must be taught what the kidney diet is and why they need to follow it for the rest of their lives. Since the kidney diet is complex, they must be provided with educational materials that outline the diet and be strongly encouraged to visit a kidney dietitian who will tell them what and how much to eat.

Dietitians and kidney doctors will teach them about the benefits of eating fresh foods and avoiding processed foods. Patients should remember that the ‘p’ in ‘p’rocessed foods is akin to ‘p’acked with calories. Learning to read a Nutrition Facts label is a must if the doctor wants to do all he or she can to help the patient slow down – and sometimes halt – the progression of kidney disease. It is important to remember that in the earlier stages of kidney disease, the diet may not be as strict – but if progression of the disease is noted, then dietary modifications are more stringent and frequent laboratory tests may need to be performed to assess progress.

2. ‘A’ in the four point CKD plan stands for activity. “What is activity?” you might say. It could mean walking more, taking more steps daily, joining a gym, hiking, biking or any activity that keeps you on your feet. As most Americans already know, the obesity rates in the USA are skyrocketing leading to most chronic health conditions such as Chronic Kidney Disease, Coronary Artery Disease, Stroke, Arthritis, Lung Disease, etc. These chronic health conditions stem from lack of activity and consuming excessive calories. Many patients lead a sedentary lifestyle such as watching TV for long hours which leads to worsening of their health issues. Patients should be encouraged to do the activities they enjoy the most such as dancing, or walking in a park or on a beach. Patients should weigh themselves on a weekly basis to monitor their weight.

3. ‘M’ in the acronym stands for medications that your doctor prescribes. Your doctor may also tell you not to take certain over the counter medications that may harm your kidneys such as Advil, Motrin, Aleve, Ibuprofen, Celebrex, Prilosec, herbal remedies, etc. I encourage all patients to memorize their medications and keep a list with them at all times. Remember that all medications are prescribed because the benefit to the patient outweighs the risk and no medication is entirely safe; therefore, it should be taken as prescribed and any side effects reported to your doctor. You should not take any new medicine unless it has been cleared by your kidney specialist.

4. ‘E’ in the above acronym stands for education. This is the key element in the D.A.M.E plan to treat patients with CKD. Unless the patient has a clear understanding of their disease process, labs, treatment plan, and the role of diet, activity, and medications, they will not be successful in managing and slowing the progression of Chronic Kidney Disease. How well a patient does will depend on their knowledge of their disease and if they comply with the instructions given to them by the kidney doctors.

I hope that all kidney doctors and patients keep the D.A.M.E. acronym in mind. Patients who are active participants in their care lead healthier and productive lives. I wish all of the readers well.

I hadn’t heard of the D.A.M.E. method before but I like it, especially “the ‘p’ in ‘p’rocessed foods is akin to ‘p’acked with calories.” Many thanks, Dr. Kang, for introducing this common sense theme to us.

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!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

It’s the Heat AND the Humidity

Hawaii is so beautiful… and Maui so healing. There was just one thing, though. I somehow managed to forget how humid it is. As you may or may not remember, after we’d come back from the Caribbean and from San Antonio last year, I vowed never to go to a humid climate during the summer again. Well, Maui was Bear’s 71st birthday present so maybe that’s why I so conveniently forgot my vow.

Here’s why I shouldn’t have. This is updated from SlowItDownCKD 2016.

ResearchGate at https://www.researchgate.net/publication/263084331_Climate change and Chronic Kidney Disease published a study from the Asian Journal of Pharmaceutical and Clinical Research from February of 2014 (That’s over three years ago, friends.) which included the following in the conclusion:

“Our data suggest that burden of renal diseases may increase as period of hot weather becomes more frequent. This is further aggravated if age advanced and people with chronic diseases like diabetes and hypertension.”

That makes sense, but how will this happen exactly? I included this June, 2010, article in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1. Apparently, heat (and humidity) has been an acknowledged threat to our kidneys for longer than we’d thought.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’ Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

By the time this book’s twin, The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, was ready for publication, the (then) spokesman for The National Kidney Foundation – Dr. Leslie Spry – had this to say about heat and humidity:

“Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes less effective at dispersing body heat, and the core body temperature begins to rise.”

The entire article is at http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html.

Oh, so humidity affects sweating and body heat rises. Humidity greater than 70%. That covers almost the entire time we were in the Caribbean and Texas (and now Hawaii). Well, what’s the connection between heat illness and CKD then?

The CDC offers the following advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.
• Drink more water than usual and don’t wait until you’re thirsty to drink.
• Check on a friend or neighbor, and have someone do the same for you.
• Check the local news for health and safety updates regularly.
• Don’t use the stove or oven to cook——it will make you and your house hotter.
• Wear loose, lightweight, light-colored clothing.
• Take cool showers or baths to cool down….”

Uh-oh, we’re already in trouble. Look at the first suggestion: our fluid intake is restricted to 64 oz. (Mine is, check with your nephrologist for yours.) I know I carefully space out my fluids – which include anything that can melt to a liquid – to cover my entire day. I can’t drink more water than usual and, sometimes – on those rare occasions when I’ve been careless – have to wait until I’m thirsty to drink.

Diabetes is the foremost cause of CKD. I was curious how heat affected blood sugar so I popped over to Information about Diabetes at http://www.informationaboutdiabetes.com/lifestyle/lifestyle/how-heat-and-humidity-may-affect-blood-sugar and found this:

1. If our body is low on fluids, the kidneys receive less blood flow and work less effectively. This might cause blood glucose concentrations to rise.
2. If someone’s blood sugar is already running high in the heat, not only will they lose water through sweat but they might urinate more frequently too, depleting their body’s fluids even more.

There’s more at the website if this interests you.

According to the U.S. Department of Veterans’ Affairs at https://www.visn9.va.gov/VISN9/news/vhw/summer07/humidity.asp,
“Hot weather can lead to dehydration, heat exhaustion and heat stroke, but the dangers increase when you add humidity to the mix. When the temperature rises above 70F and the humidity registers more than 70 percent, you need to be on the alert.

Who’s most at risk?
People with high blood pressure, heart disease, lung disease or kidney disease (I made that bolded.) are most vulnerable to the effects of humid conditions, as are those over age 50. Other risk factors that can affect your body’s ability to cool itself include being obese; having poor circulation; following a salt-restricted diet; drinking alcohol; having inefficient sweat glands; and taking diuretics, sedatives, tranquilizers or heart or blood pressure medication.”

So, pretty much, the way to deal with heat and humidity having an effect on your (and my) CKD is to avoid it. That doesn’t mean you have to move, you know. Staying in air conditioning as long as you can so your body is not overheated and can better handle this kind of weather will help. Wearing a hat and cool clothes will also help. I certainly relearned the value of wearing cotton this past week. It’s a fabric that breathes. I’ll bet that this is how those CKD patients who live in humid areas deal with it. Feedback, anyone? Robin? Mark?

Now for some great, unrelated news: One of our daughters gave Bear the best birthday present. She and her husband FaceTimed us in Maui on Bear’s birthday to tell us we’re going to be grandparents. This is a first for them… and for us. To make this even better – as if that were possible – little one is expected on our anniversary. I love the ebb and flow of the universe, don’t you?

Until next week,
Keep living your life!

I’ll Sleep When I’m Dead

How many times have you said this (before your diagnose) to those who told you to slow down, take it easier, don’t rush so, take some time for yourself, etc.? As a younger person, I was a high school teacher, an actor, a writer, and – most importantly – a mother, actually a single mother once my daughters were double digit aged.

Guess what. You may sleep when you’re dead, but you need to sleep now before you hasten the time to your death. What’s that? You get enough sleep? I thought I did, too, but I wasn’t getting the kind of sleep I needed.

Why do we need sleep anyway? I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for some answers. The first reason I stumbled across was in an article from The Journal of The American Society of Nephrologists:

“Hermida tells WebMD that some of the body’s blood pressure control systems are most active while we sleep. So medicines designed to control those systems work better when taken close to the time when the systems are activated most fully.”

Ramon C. Hermida, PhD is the director of the bioengineering and chronobiology labs at the University of Vigo in Spain.

Hmmm, I take medication for hypertension… and I take it at night. I see that I need to sleep for it to work most effectively. I’ve known this for years and written about it. The point is you may need to know about it.

Then I started wondering if I were correct in the amount of sleep I thought I needed. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 was helpful here:

“How much sleep is enough sleep anyway? According to Dr. Timothy Morgenthaler of The Mayo Clinic site, seven to eight hours is what an adult needs, but then he lists mitigating circumstances under which you might need more:

• Pregnancy. Changes in a woman’s body during early pregnancy can increase the need for sleep.
• Aging. Older adults need about the same amount of sleep as younger adults. As you get older, however, your sleeping patterns might change. Older adults tend to sleep more lightly and for shorter time spans than do younger adults. This might create a need for spending more time in bed to get enough sleep, or a tendency toward daytime napping.
• Previous sleep deprivation. If you’re sleep deprived, the amount of sleep you need increases.
• Sleep quality. If your sleep is frequently interrupted or cut short, you’re not getting quality sleep. The quality of your sleep is just as important as the quantity.”

While I’m not pregnant (and will become a medical miracle if I become pregnant), all the other circumstances do apply to me. During Shiva after my brother’s death, there was very, very little sleeping going on. Hence, sleep deprivation. I’m aging and my sleep quality is not great right now. Those are my circumstances, but they could be yours. Are you getting enough sleep?

Sometimes, simply having Chronic Kidney Disease can be the source of sleep problems. This is something I’ve written about several times. Here’s an excerpt from SlowItDownCKD 2015 about just that:

“We’ve known for a long time that sleep disorders are more common in kidney disease patients than in the general population,” Charles Atwood, MD, associate director of the University of Pittsburgh Medical Center’s Sleep Medicine Center in Pennsylvania, who wasn’t involved in the study, told Medscape Medical News. “A lot of studies in the past focused on the dialysis population. It seems like this group focused on people with milder degrees of kidney disease and basically found that they also have sleep disorders and I’m not surprised by that,” he added.

You can read the entire article at http://www.medscape.com/viewarticle/805342, although you will have to register for a free account.

By digging deep, far and wide, I finally figured out that toxic waste buildup in our systems (from the imperfect blood filtering by our kidneys) could be the cause of my segmented sleep. I took a comment from one study, a sentence from another, and unilaterally decided this was the reason. I am not a doctor – as I keep saying – and I don’t have the facts I’d like to behind this conclusion….”

Oh, right: you need a definition of segmented sleep. Wikipedia provides one:

“Segmented sleep, also known as divided sleep, bimodal sleep pattern, bifurcated sleep, or interrupted sleep, is a polyphasic or biphasic sleep pattern where two or more periods of sleep are punctuated by periods of wakefulness.”

The National Institutes of Health at https://www.nhlbi.nih.gov/health/health-topics/topics/sdd/why sums up our need for sleep beautifully:

“Sleep plays an important role in your physical health. For example, sleep is involved in healing and repair of your heart and blood vessels. Ongoing sleep deficiency is linked to an increased risk of heart disease, kidney disease, high blood pressure, diabetes, and stroke.

Sleep deficiency also increases the risk of obesity. For example, one study of teenagers showed that with each hour of sleep lost, the odds of becoming obese went up. Sleep deficiency increases the risk of obesity in other age groups as well.

Sleep helps maintain a healthy balance of the hormones that make you feel hungry (ghrelin) or full (leptin). When you don’t get enough sleep, your level of ghrelin goes up and your level of leptin goes down. This makes you feel hungrier than when you’re well-rested.

Sleep also affects how your body reacts to insulin, the hormone that controls your blood glucose (sugar) level. Sleep deficiency results in a higher than normal blood sugar level, which may increase your risk for diabetes.

Sleep also supports healthy growth and development. Deep sleep triggers the body to release the hormone that promotes normal growth in children and teens. This hormone also boosts muscle mass and helps repair cells and tissues in children, teens, and adults. Sleep also plays a role in puberty and fertility.

Your immune system relies on sleep to stay healthy. This system defends your body against foreign or harmful substances. Ongoing sleep deficiency can change the way in which your immune system responds. For example, if you’re sleep deficient, you may have trouble fighting common infections.”

I think I need to go to sleep now.

Until next week,
Keep living your life!

Two Masters

A friend of mine, the one I mentioned when I wrote about renal sally ports, recently has had a relapse. Yep, he neglected to take his medications at the proper times. That can cause havoc for mental illness, especially bipolar disorder. It got me to thinking. What if my friend had Chronic Kidney Disease AND bipolar disease? How could he handle both diagnoses at the same time?

Let’s start at the beginning. There are certain drugs I take in the hopes of delaying dialysis as long as possible. One of those is the ACE Inhibitor I’d been taking for hypertension for about two decades before I was even diagnosed with CKD. Here’s the definition from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease: “ACE Inhibitor: A blood pressure medication that lowers protein in the urine if you have CKD.”

It works by both relaxing the blood vessels and reducing the blood volume. This, in turn, lowers your blood pressure which, in turn, lowers your heart’s oxygen needs. And the problem for my friend would be? Well, maybe just remembering to take the medication each day.

However, according to MedicineNet.com at http://www.medicinenet.com/ace_inhibitors/page2.htm,
The most common side effects are:
• Cough
• Elevated blood potassium levels
• Low blood pressure
• Dizziness
• Headache
• Drowsiness
• Weakness
• Abnormal taste (metallic or salty taste)
• Rash
• Chest pain
• Increased uric acid levels
• Sun sensitivity
• Increased BUN and creatinine levels

Did you notice increased uric acid levels, and increased BUN and creatinine levels? This could be a dicey medication for CKD patients if they did not heed their doctor’s advice once (s)he has evaluated the patient’s labs. That’s the problem here: not having the ability to be a compliant patient during a bipolar episode.

I was also prescribed a drug for cholesterol, a statin. This drug inhibits (the word of the day) an enzyme in the liver that produces lipids. As reported in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:
According to Dr. Dr. Robert Provenzano, chief of nephrology at St. John Hospital and Medical Center in Detroit, “…LDL, bad cholesterol, directly impacts acceleration of Chronic Kidney Disease.” One of the possible side effects is of this drug is Type 2 Diabetes. All I can say about that is thank goodness these side effects are not the norm.

Here’s the problem: statins have to be taken at night. That’s when the body produces cholesterol. Again, can my friend be compliant during an episode? What about the drugs he already takes? Are they going to somehow interfere with these common drugs for CKD?

Lithium is the usual drug for him. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:
“There were two Plenary Sessions I attended at the Southwest Nephrology Conference I attended last weekend. It was at the second one, ‘Psychiatric issues in kidney patients’ that I suddenly sprang to attention. What was this man saying? Something about lithium doubling the risk for Chronic Kidney Disease? And I was off… how many psychiatric patients knew that fact? How many of their caretakers knew that just in case the patient was not responsible at the time of treatment? What about children? Did their parents know? Was a screening for CKD performed BEFORE lithium was prescribed?”

Kidney.org at https://www.kidney.org/atoz/content/lithium has me downright frightened for my friend:

“What is lithium?
Lithium is a common medicine used to help calm mood for treating people with mental disorders. Since such disorders need lifelong treatment, long-term use of lithium may be harmful to organs, such as the kidneys.

How does lithium cause kidney damage?
Lithium may cause problems with kidney health. Kidney damage due to lithium may include acute (sudden) or chronic (long-term) kidney disease and kidney cysts. The amount of kidney damage depends on how long you have been taking lithium. It is possible to reverse kidney damage caused by lithium early in treatment, but the damage may become permanent over time.

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

I keep reminding myself that the word “may” appears over and over again. Yet, since my friend either wasn’t taking his medication at all or not taking it as prescribed, it wasn’t working…and he is still at risk for CKD.

I found this tidbit on Drugs.com at https://www.drugs.com/interactions-check.php?drug_list=1477-0,1489-0, ACE Inhibitors: “…may increase the blood levels and effects of lithium. You may need a dose adjustment or more frequent monitoring by your doctor to safely use both medications.” Wait. So you need an ACE Inhibitor if you have CKD, but it can interfere with the lithium you take if you’re bi-polar. And statins? While I couldn’t find any interactions, I did find the caution that there may be some and to check with your doctor. I am aware he takes an anti-depressant, but in researching, have discovered there are many that are safe to take with CKD.

My friend usually goes to his medical appointments, but he neglects to mention certain symptoms and sometimes has trouble telling reality from non-reality. Does he know whether his doctor has warned him about the higher risk of CKD or not? Does he know that he may develop a form of diabetes from long term use of lithium? Does he know that if even one of his parents has CKD, his risk is doubled yet again?

Tomorrow is July 4th, the day the United States celebrates its independence from the tyranny of England. Where is my friend’s independence from the tyranny of his mental illness? The English and the United States have learned to peacefully share our existences (right, English readers?). Here’s hoping my friend can learn to peacefully share his existence with bipolar disorder… and CKD should he develop it. Heaven forbid.

Until next week,
Keep living your life!

Gluten Free

“…I started GF mid-April & my June lab work showed significant improvement. My next lab work is not until August, but I feel & look so much better, and because my BP dropped so much, my nephrologist took me off hydrochlorothorozide and reduced irbesartan from 300 to 75.” This is a small part of the message I received from a reader… and it intrigued me.

I take hydrochlorothiazide.  I know I looked it up at the time it was prescribed, something about fluid. Hmmm, it wouldn’t hurt to look it up again to refresh my (and your) memory. According to Medicinenet.com at http://www.medicinenet.com/hydrochlorothiazide/page2.htm, hydrochlorothiazide is prescribed for the following reasons:

“Hydrochlorothiazide is used to treat excessive fluid accumulation and swelling (edema) of the body caused by heart failure, cirrhosis, chronic kidney failure, corticosteroid medications, and nephrotic syndrome. It also is used alone or in conjunction with other blood pressure lowering medications to treat high blood pressure…. Hydrochlorothiazide can be used to treat calcium-containing kidney stones because it decreases the amount of calcium excreted by the kidneys in the urine and thus decreases the amount of calcium in urine to form stones….”

I didn’t recognize irbesartan specifically, although the sartan part was  familiar. According to the same source, but this time at http://www.medicinenet.com/irbesartan/article.htm, “Irbesartan is used to treat high blood pressure (hypertension) and to help protect the kidneys from damage due to diabetes. Lowering high blood pressure helps prevent strokes, heart attacks, and kidney problems. Irbesartan belongs to a class of drugs called angiotensin receptor blockers (ARBs). It works by relaxing blood vessels so that blood can flow more easily.”

Oh, of course! I’m taking losartan for the same reason. I’d had hypertension for over 20 years before I was diagnosed with Chronic Kidney Disease. Even if I hadn’t, once I was diagnosed with CKD, a drug like this would have been prescribed.  As a matter of fact, when I complained to my primary care doctor that I was taking too many pills (mostly supplements), she came up with one that combined hydrochlorothiazide and losartan.

 

 

 

 

But I digress. So, it’s a good thing that this reader no longer needs her hydrochlorothiazide since she has no swelling and that her irbesartan has been reduced since her blood vessels are becoming more relaxed. Wait a minute. Why wouldn’t every CKD patient want these results? Ah, but I’ve left something out of the equation.

She’s gone GF or Gluten Free. Ready? Here is the definition of gluten from the Oxford Dictionary at https://en.oxforddictionaries.com/definition/GLUTEN “A mixture of two proteins present in cereal grains, especially wheat, which is responsible for the elastic texture of dough.” Oh, come on. There must be more to it than that. Let’s try gluten free instead of gluten. Oh, my! NephCure at https://nephcure.org/livingwithkidneydisease/diet-and-nutrition/gluten-free-diet/

has an entire page devoted to going gluten free. But I am getting ahead of myself here.

Let’s go back to gluten, this time sources. The American Diabetes Association at http://www.diabetes.org/food-and-fitness/food/planning-meals/gluten-free-diets/what-foods-have-gluten.html  offers these lists:

What Foods Have Gluten?

Gluten is found in wheat, rye, barley and any foods made with these grains. Avoiding wheat can be especially hard because this means you should avoid all wheat-based flours and ingredients. These include but are not limited to:
White Flour
Whole Wheat Flour
Durum Wheat
Graham Flour
Triticale
Kamut
Semolina
Spelt
Wheat Germ
Wheat Bran

Common foods that are usually made with wheat include:
Pasta
Couscous
Bread
Flour Tortillas
Cookies
Cakes
Muffins
Pastries
Cereal
Crackers
Beer
Oats (see the section on oats below)
Gravy
Dressings
Sauces
This may seem like a long list, but there are still plenty of gluten-free foods out there! Choose from many fresh, healthy foods like fruits, vegetables, beans, dairy, nuts and gluten-free grains like quinoa or rice. There are also gluten-free versions of many of the foods above available in most grocery stores. You just have to look for them!

Gluten Surprises
You may not expect it, but the following foods can also contain gluten:
broth in soups and bouillon cubes
breadcrumbs and croutons
some candies
fried foods
imitation fish
some lunch meats and hot dogs
malt
matzo
modified food starch
seasoned chips and other seasoned snack foods
salad dressings
self-basting turkey
soy sauce
seasoned rice and pasta mixes
There are also many additives  and ingredients in packaged foods that may contain gluten. Always check labels and ingredient lists for these. For a more comprehensive list of gluten-containing additives, contact your local celiac support group.

Other Tips to Remember
Don’t forget that ingredients in food products change frequently, so always check the label before buying packaged foods. Remember that “wheat-free” does not automatically mean “gluten-free.” While a product may not contain wheat, it can still contain rye or barley in some form. If you have any question about whether a food contains gluten, contact the manufacturer directly.

The Fuss About Oats
Pure oats are a gluten-free food, but most commercially processed oats have been contaminated during the growing, harvesting or processing stages. In the past, many experts recommended completely avoiding oats  those on a gluten-free diet in addition to wheat, barley, and rye. Now, some oats are grown and processed separately, and can be labeled “gluten-free.”

I see an awful lot of the same foods to avoid on this list as I do on the renal diet. I wonder if that would make it easier to go gluten free if you decide to?

Phosphorous! Aha. We, as CKD patients, need to limit our phosphorous intake. Have you noticed that many of these foods are high phosphorous? Is it possible that the gluten free diet will help us with our renal diets? I’m not suggesting that you go gluten free and I’m not suggesting that you don’t. I am saying the idea is, well, intriguing.

Before I forget: SlowItDownCKD has been chosen as one of Healthline’s top kidney disease blogs for 2017. Second year in a row!!!!! AND I’ve lowered the price of all five of my digital kidney books to $2.99 to spread the awareness of CKD out there more effectively. Oh, yes, you can still get them for free on Kindle Unlimited.

Until next week,

Keep living your life!

 

 

CKD and the VA or It’s Not Alphabet Soup at All

Today is Memorial Day in the United States. It is not a day to say Happy Memorial Day since it is a day commemorating those who gave their lives for our freedom. Lots of us have bar-b-ques or go to the park or the beach to celebrate. No problem there as long as we remember WHO we are celebrating. I promise: no political rant here, just plain appreciation of those who serve(d) us both living and dead. Personally, I am honoring my husband, my step son-in-law, and all those cousins who just never came home again.

I explained the origins of this day in SlowItDownCKD 2015 (May 25), so won’t re-explain it here. You can go to the blog and just scroll down to that month and year in the drop down menu on the right side of the page under Archives. I was surprised to read about the origins myself.

We already know that Chronic Kidney Disease will prevent you from serving your country in the military, although there are so many other ways to serve our country. This is from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

‘The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services establishes medical standards, which, if not met, are grounds for rejection for military service. Other standards may be prescribed for a mobilization for a national emergency.

As of September 13, 2011, according to Change 1 of this Instruction, the following was included.

‘Current or history of acute (580) nephritis or chronic (582) Chronic Kidney Disease of any type.’

Until this date, Chronic Kidney Disease was not mentioned.”

You can read the entire list of The Department of Defense’s Instruction for Medical Standards for Appointment, Enlistment, or Induction in the Military Services at http://dtic.mil/whs/directives/corres/pdf/613003p.pdf. You’ll also find information there about metabolic syndrome, high blood pressure, high cholesterol, diabetes, and pre-diabetes as conditions for non-enlistment.

This got me to thinking. What if you were had already enlisted when you developed CKD. Yes, you would be discharged as medically unfit, but could you get help as a veteran?

According to the Veterans Administration at https://www.research.va.gov/topics/Kidney_disease.cfm#research4,

“In 2012, VA and the University of Michigan began the work of creating a national kidney disease registry to monitor kidney disease among Veterans. The registry will provide accurate and timely information about the burden and trends related to kidney disease among Veterans and identify Veterans at risk for kidney disease.

VA hopes the kidney disease registry will lead to improvements in access to care, such as kidney transplants. The department also expects the registry will allow VA clinicians to better monitor and prevent kidney disease, and will reduce costs related to kidney disease.”

That’s what was hoped for five years ago. Let’s see if it really came to fruition.

Oh, this is promising and taken directly from The U.S. Department of Veterans Affairs.

“VA eKidney Clinic

The VA eKidney Clinic is now available! The eKidney Clinic offers patient education through interactive virtual classrooms where Veterans can learn how to take care of their kidneys and live a good life with kidney disease. Please visit the VA eKidney Clinic website or click on the picture below. For additional information see the eKidney Clinic Patient Information Brochure.”

The Veterans Health Administration doesn’t just provide information, although I must say I was delighted to see the offer of Social Work Services. There is also treatment available. Notice dialysis mentioned in their mission statement.

Mission: The VHA Kidney Program’s mission is to improve the quality and consistency of healthcare services delivered to Veterans with kidney disease nationwide. The VHA Kidney Program provides kidney-related services to dialysis centers throughout VA’s medical centers. Professional guidance and services are available in the form of consultation and policies developed by VA kidney experts. These experts are dedicated to furthering the understanding of kidney disease, its impact on Veterans, and developing treatments to help patients manage disease symptoms. In addition, the VHA Kidney Program provides VA healthcare professionals with clinical care, education, research, and informatics resources to improve healthcare at local VA dialysis facilities.”

I did find it strange that there was a cravat on the Veterans Administration site that they do not necessarily endorse the VHA Kidney Program, especially since it is so helpful.

 

 

 

How involved is the VA with CKD patients? Take a look for yourself at this 2015 statistics by going to https://www.va.gov/HEALTH/services/renal/documents/Kidney_Disease_and_Dialysis_Services_Fact%20Sheet_April_2015.pdf

  • All Veterans enrolled in VA are eligible for services, regardless of service connection status
  • Enrolled Veterans can receive services from the VA or from community providers under the Non-VA Care Program if VA services are unavailable
  • 49 VA health care facilities offer kidney disease specialty care (nephrology services)
  • 96 VA facilities offer inpatient and/or outpatient dialysis; 25 centers are inpatient-only. Of the 71 VA outpatient dialysis centers, 64 are hospital based units, 2 are joint VA/DoD units, 4 are freestanding units, and one is within a community based outpatient clinic (CBOC)
  • VA enrollees must be offered the option of home dialysis provided either directly by the VA or through the Non-VA Care Program
  • 36 outpatient hemodialysis centers offer home dialysis care directly.
  • 5 VA medical centers host kidney transplantation programs.
  • VA Delivered Kidney Care (Calendar Year 2013) 13,794 Unique Veterans receiving dialysis paid for by VA; representing an annual increase of 13% since 2008. 794 Veterans received home dialysis; 55percent (434) by VA facilities and 45percent (360) under the Non-VA Care Program.
  • Increasing use of telehealth services to increase Veteran access to kidney specialty care Secure messaging: 7,319 messages, Clinical video telehealth: 4,977 encounters
  • VA Kidney Research (FY ’14) the research budget for the study of kidney disease has been $18.5 million per year for the past 5 years (FY ’10-FY ’14). The VA Cooperative Studies Program has supported national clinical trials addressing the best treatment of Veterans with CKD since at least 1998.

It seems to me our veterans are covered. Now if we could only make sure the rest of us stay covered no matter what bills the current administration signs into law.

Until next week,

Keep living your life!

So That’s How It’s Decided

SlowItDownCKD’s being honored as one of the best kidney disease blogs for 2016 has had some interesting results.  The first was the health and food writer’s guest blog about hydration for Chronic Kidney Disease on March 6th. Then it was the guest blog by the Social Security Administration’s Outreach Director. This week, it’s a telephone interview with Dr. Michael J. Germain, a nephrologist from Massachusetts, about some of the suggested guidelines in the upcoming KDIGO for 2016.

Got it:  backtrack. Let’s start with KDIGO. This stands for KIDNEY DISEASE | IMPROVING GLOBAL OUTCOMES. Their homepage at KDIGO.org states, “KDIGO MISSION – Improving the care and outcomes of kidney disease patients worldwide through the development and implementation of global clinical practice guidelines.” Anyone up for visiting their offices? What an excuse to go to Belgium!

Okay, now we know what the organization is and what it does, but why Dr. Germain? I asked the same question. Although he is not on the KDIGO panel of doctors who decide what the next year’s development and implementation will be, he is well versed with the topic having published or having been part of the writing for an overwhelming number of articles in such esteemed journals as the American Journal of Kidney Disease, Kidney International, and The Clinical Journal of the American Society of Nephrology, as well as contributing to textbooks, … and he could simplify the medicalese in the guidelines to simple English for this lay person.

If you think I remind you quite often that I’m not a doctor, you should read my emails to our liaison. State I’m not a doctor, repeat, state I’m not a doctor, repeat. She had the good graces to laugh at my insecurities.

The latest guideline updates have not been released yet, so both the good doctor (over 40 years as a nephrologist) and I (CKD patient and awareness advocate for a decade) were working off the draft that was released last August.

Dr. Germain also made it a point to ensure that I understand the guidelines are based upon expert opinion, not evidence. That made sense to me since he is not only a patient seeing nephrologist, but also a research nephrologist – to which his numerous publications will attest. With me being a lay person, he “had a lot of ‘splaining to do.” I had to admire his passion when discussing the vitamin D guidelines.

In the draft guidelines, it was suggested that hypercalcemia be avoided. I know; it’s a new word. We already know that hyper is a prefix meaning over or too much; think excessive in this case. Calcemia looks sort of like calcium. Good thinking because, according to Healthline at http://www.healthline.com/health/hypercalcemia:“Hypercalcemia is a condition in which you have too high a concentration of calcium in your blood. Calcium performs important functions, such as helping keep your bones healthy. However, too much of it can cause problems….”

This excerpt from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains how calcium works with vitamin D and phosphorous.

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates. The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body.”

The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 offers us more information.

“The parathyroid glands are located in the neck, near or attached to the back side of the thyroid gland. Parathyroid hormone controls calcium, phosphorus, and vitamin D levels in the blood and bone. Release of PTH is controlled by the level of calcium in the blood. Low blood calcium levels cause increased PTH to be released, while high blood calcium levels block PTH release. …  Thanks to MedLine Plus at http://www.nlm.nih.gov/medlineplus/ency/article/003690.htm .”

As Dr. Germain explained, CKD patients break down vitamin D quickly since they have more of a catabolic enzyme, the enzyme that converts the vitamin D to an inactive form. Oh, right, catabolic means “any destructive process by which complex substances are converted by living cells into more simple compounds, with release of energy” according to Dorland’s Medical Dictionary for Health Consumers.

Here’s the problem: vitamin D can cause hypercalcemia. Dr. Germain phrased it, “In fact, the draft guideline recommends active vitamin D hormone therapy not to be routinely used in patients with CKD stage 3 or 4 due to increased risk of hypercalcemia and the lack of efficacy shown in studies.” Therefore, he urges nephrologists to wait until stage 4 or 5 to recommend vitamin D since hyperparathryoidism may lead to bone damage. But just as in any disease, it is harder to treat bone damage once it’s already there. His recommendation: Ask about your parathyroid level every three to six months and discuss the results of your tests with your nephrologist. By the way, his feeling – and obviously mine – is that preserving the kidney function is the most important job of the nephrologist and the patient.

I am eager to see the guidelines published so I can write more about them. The conclusion about vitamin D is based upon what nephrologists have seen in their practices since the last set of KDIGO guidelines were published in 2009. It will affect the way our nephrologists speak with us about our treatment, just as the other guidelines for 2016 will.

That will affect the way we self-manage. For example, I restrict my sun time to 15 minutes a day based on these findings. Take a look at how you self-manage. It should bring up a list of questions for you to ask your nephrologist at your next appointment.

You should also know the KDIGO deals with all stages of CKD including End Stage CKD and pediatric CKD.

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

In keeping with my theme of March being Women’s History Month – minus the history – and National Kidney Month, today’s blog will be about those women around the world who have contributed to Chronic Kidney Disease knowledge. Two such women, Dr. Vanessa Grubbs and Dr. Bessie Young, were highlighted in February’s tribute to Black History Month and women in nephrology. Thank you again, ladies, for all you do for CKD patients.

When you realize the study of nephrology as we know it is only a little over 50 years old (Incredible, isn’t it?), you’ll understand why I raided The International Society of Nephrologists (ISN) October 2010 issue at http://www.theisn.org/images/ISN_News_Archive/ISN_News_35_October_2010_LR.pdf for the following information. I’ve added notes for clarification when needed.

United States: An accomplished researcher and physician, Josephine Briggs is a former ISN councilor and former councilor and Secretary of ASN (American Society of Nephrologists). She is the former director of the Division of Kidney, Urologic, and Hematologic Diseases, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), US National Institutes of Health (NIH), and was responsible for all NIH funded renal research in the 1990s. Today, she is Director of the National Center for Complementary and Alternative Medicine. She maintains a lab at NIDDK, researching the renin-angiotensin system, diabetic nephropathy, circadian regulation of blood pressure, and the effect of antioxidants in kidney disease.

Europe: Rene Habib, who passed away (in 2010), was a truly pioneering renal pathologist. She provided the first description of many renal diseases and worked with ISN founder Jean Hamburger to establish nephrology as a new discipline in Europe. Her contributions and energy were central to establishing pathology as an essential and integrated component of this new field worldwide.

India: Vidya N. Acharya was the first woman nephrologist in India and trained some 150 internists in nephrology. For three decades, her research focused on Urinary Tract Infection. She was a consultant nephrologist at Gopalakrishna Piramal Memorial Hospital and director of the Piramal Institute for training in Dialysis Technology, Renal Nutrition and Preventive Nephrology in Mumbai. She received a Lifetime Achievement Award from the Indian Society of Nephrology in 2007.

China: HaiYan Wang is the Editor of Kidney International China and has been an ISN and ASPN (American Society of Pediatric Nephrology) councilor and Executive Committee member as well as a member of the editorial boards of Chinese and international renal journals. She has published over 200 articles and books in Chinese and English. She graduated from Beijing Medical University. After three years of internship, she became a nephrology fellow at the First Hospital Beijing Medical University. Since 1983, she moved on to Chief of Nephrology and later became Professor of the Department of Medicine at the First Hospital Beijing. She has been Chairman of the Chinese Society of Nephrology and is Vice President of the Chinese Medical Association. Her unit is the largest training site for nephrology fellows in China.

United Arab Emirates: Mona Alrukhaimi is co-chair of the ISN GO (International Society of Nephrologists Global Outreach Programs) Middle East Committee, and the leader of the KDIGO (Kidney Disease: Improving Global Outcomes) Implementation Task Force for the Middle East and African regions. She is also a Member of the Governing Board of the Arab Society of Nephrology and Renal Transplantation. Since 2006, she has actively organized World Kidney Day activities in the United Arab Emirates and prepared the past four rounds of the ISN Update Course in Nephrology. Having played an active role in the Declaration of Istanbul on Organ Trafficking and Transplant Tourism, she contributes to serve on the custodian group and takes part in the Steering Committee for Women in Transplantation under The Transplantation Society.

South Africa: Saraladevi Naicker carried the weight of setting standards and provided the first training program for nephrologists in Africa over the last decade (Remember this article was published in 2010.). Specializing in internal medicine, she trained in Durban and later helped set up a Transplant Unit in the Renal Unit at Addington Hospital. In 2001, she became Chief Specialist and Professor of Renal Medicine at University of Witwatersrand in Johannesburg and in 2009 was appointed Chairman of Medicine at Wits. She is proud that there are currently (Again: in 2010) six postgraduate students from Africa studying for higher degrees in nephrology under her tutelage. Over the years, Naicker’s unit has served as the main training site for young nephrologists from across Africa and many individuals trained by her are currently practicing in Africa. Naicker received the Phillip Tobias Distinguished Teaching Award in 2006, an honor which bears testimony to her teaching prowess.

Israel: Batya Kristal is Professor of Medicine at the Technion Medical School, Haifa. She is the first woman to direct an academic nephrology department in Israel. At the Western Galilee Hospital, Nahariya, she leads a translational research project focusing on different aspects of oxidative stress and inflammation. She also heads a large clinical nephrology and dialysis program, which uniquely integrates staff and patients from the diverse ethnic population of the Galilee. Founder of the Israeli NKF, initiator and organizer of the traditional annual international conferences at Nahariya, she is truly an important role model for women in the country.

Australia: After holding resident positions in medicine and surgery and as registrar in medicine at the Baragwanath Hospital in Johannesburg, Priscilla Kincaid-Smith was director and physician of Nephrology at Royal Melbourne Hospital and Professor of Medicine at University of Melbourne. She demonstrated overwhelming evidence of the link between headache powders and kidney damage and contributed to research on the links between high blood pressure and renal malfunction. The only female ISN President so far, she was named Commander of the Order of the British Empire “for services to medicine”, was awarded the David Hume Award from the National Kidney Foundation (USA) and became a Companion of the Order of Australia.

There’s very little room for me to add my own words this week so I’ll use them to add myself as a lay woman in nephrology (What hubris!) to let you know that the edited digital version of SlowItDownCKD 2016 will be out on Amazon later this week. You guessed it: in honor of National Kidney Month.

 

Until next week,

Keep living your life!

February is Black History Month

In honor of Black History Month, I thought I would write about Blacks who have contributed to the research and treatment of Chronic Kidney Disease. I’ll be highlighting a few people and then dealing with why CKD is treated differently for Blacks.

Ladies first: Dr. Bessie Young is a nephrologist… and more. This is from The University of Washington’s Department of Medicine at young-bessiehttps://medicine.uw.edu/news/dr-bessie-young.

“Dr. Young is a professor of medicine in the Division of Nephrology and holds adjunct titles in the Departments of Epidemiology and Health Services. She received her MD in 1987 and her MPH in 2001, both from the University of Washington.

Her research focuses on racial disparities and genetic factors predicting outcomes of patients with kidney disease, education regarding access to transplantation and dialysis for minorities, and access to kidney disease care in rural areas.”

While I have great admiration for both Drs. Young and Kountz (see below), I feel a connection with Dr. Vanessa Grubbs. We corresponded a bit when she first began her blog, which is both personal and professional. We all know I’m not a doctor and have never claimed to be one, but I’m convinced I can feel what a nephrologist feels when I read her blog.  This is from The California Health Care Foundation’s website at http://www.chcf.org/authors/vanessa-grubbs?article=%7BF610E00F-9FE7-4E95-AEBB-5781EE7E0F66%7D:

“Dr. Grubbs is an assistant professor of medicine in the Division of Nephrology at the University of California, San Francisco, Zuckerberg San Francisco General vanessa-grubbHospital, where she has maintained a clinical practice and clinical research program since 2009. Though most of her time is dedicated to research and patient care, her passion is creative nonfiction writing. She is working on her first book, and she blogs at thenephrologist.com.”

Her book, Hundreds of Interlaced Fingers: A Kidney Doctor’s Search for the Perfect Match will be available on Amazon.com this June. By the way, she donated a kidney to her husband when they were only dating.

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

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

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

It’s time for an explanation as to why I wrote “why CKD is treated differently for Blacks,” isn’t it?

This is from Jane E. Brody’s article Doctors sharpen message on kidney disease reprinted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“There are four main risk factors for kidney disease:  diabetes, high blood pressure, age over 60 and a family history of the disease. Anyone with these risk factors should have a test of kidney function at least once a year, Vassalotti said.  (Me here: he was the National Kidney Foundation’s Chief Medical Officer at the time the article was written). Members of certain ethnic groups are also at higher than average risk: blacks, Hispanics, Pacific Islanders and Native Americans.”

This means physicians need to monitor blood pressure and diabetes more closely for blacks (as well as the other high risk groups).

Why, you ask.  This bit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will explain about the blood pressure.

“HPB can damage small blood vessels in the kidneys to the point that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe HBP medication to prevent your CKD from getting worse since these medications reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.”IMG_2979

As for diabetes, I turned to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, for this tidbit:

“According to Diabetes.co.uk at http://www.diabetes.co.uk/how-does-diabetes-affect-the-body.html, ‘The kidneys are another organ that is at particular risk of damage as a result of diabetes and the risk is again increased by poorly controlled diabetes, high blood pressure and cholesterol’”

In addition, there is a gene more prevalent in Blacks that can exacerbate their CKD. “This discovery provides direct evidence that African-Americans with established CKD and the APOL1 risk gene variant experience a faster decline in kidney function compared to their white counterparts, irrespective in most cases of what caused their kidney disease.” Afshin Parsa, M.D., a nephrologist at the University of Maryland School of Medicine in Baltimore and a CRIC Study investigator.

parsaDr. Parsa was referring to the study on APOL1 which was published in The New England Journal of Medicine.

The following is from The National Kidney Foundation’s Fact Sheet on Blacks and CKD at https://www.kidney.org/news/newsroom/factsheets/African-Americans-and-CKD.

  • Blacks and African Americans suffer from kidney failure at a significantly higher rate than Caucasians – more than 3 times higher.
  • African Americans constitute more than 35% of all patients in the U.S. receiving dialysis for kidney failure, but only represent 13.2% of the overall U.S. population.
  • Diabetes is the leading cause of kidney failure in African Americans. African Americans are twice as likely to be diagnosed with diabetes as Caucasians. Approximately 4.9 million African Americans over 20 years of age are living with either diagnosed or undiagnosed diabetes.
  • The most common type of diabetes in African Americans is type 2 diabetes. The risk factors for this type of diabetes include: family history, impaired glucose tolerance, diabetes during pregnancy, hyperinsulinemia and insulin resistance, obesity and physical inactivity. African Americans with diabetes are more likely to develop complications of diabetes and to have greater disability from these complications than Caucasians. African Americans are also more likely to develop serious complications such as heart disease and strokes.
  • High blood pressure is the second leading cause of kidney failure among African Americans, and remains the leading cause of death due to its link with heart attacks and strokes.NKF-logo_Hori_OB

Today’s blog was a bit longer than usual to bring you this important information. We celebrate Black History Month AND need to make our Black family members, friends, and co-workers aware of their heightened risk so they can help prevent their own CKD.

Until next week,

Keep living your life!

At Last: Cuba

img_4287I’ve been saying for a couple of weeks now that I would write about Cuba, or rather The Republic of Cuba since that is the country’s official title. That’s where I spent my Groundhog’s Day 70th birthday in the company of my husband, brother, and sister-in-law. By the way, whenever we travel together, they are the best part of the trip no matter what we see or where we go.

But I digress; Cuba is a beautiful country with friendly people and colorful buildings painted in those colors the government approves … in addition to free education and free medical care. Considering Cuba is a country run by The Communist Party, maybe this universal medical and education isn’t as free as we might think.

Let’s take a look at the education first since you can’t have nephrologists without education. While there is free education, you need to be loyal to the government and perform community service as the ‘price’ of receiving it. I wasn’t clear about how you demonstrated “loyal to the government,” but the Cubanos (as the Cuban people refer to themselves) politely declined to discuss this.

The education includes six years of basics of reading, writing, and arithmetic – the same 3 Rs we study in grade school in the USA. After that, there are three years of img_4006middle school with traditional school subjects that are taught pretty much anywhere. But then things change. Cubanos can attend what we might consider a traditional high school for three years or a vocational school for three years.  This is also when marching in parades and community service begins.

Nephrologists would have chosen the traditional high school. After that, there’s another five to six years of university for their medical degree. Not everyone attends university; students need to pass certain exams in order to be allowed to attend… something we’re used to hearing. So now our doctor has become a doctor. What additional education is needed to become a nephrologist?

I tried to question the people I met in ports of call, but again they declined to answer in full. From the little bit I got from them and the even less I could garner from the internet: all medical students need to do a residency in General Medicine. If you want to go on to a specialty – like Nephrology – you need to do an additional residency in that field.

Well, what about the medicine itself? What do Cubano doctors know about nephrology?

According to Radio Angulo – Cuba’s information radio – on November 23 of last year,

img_4040“The positive development of this specialty began with the triumph of the Revolution in 1959, as Dr. Charles Magrans Buch, full professor and professor emeritus, told Granma International. Magrans began practicing his profession in 1958 in the Clinico de 26, today the Joaquin Albarran Clinical-Surgical Teaching Hospital, home to the Dr. Abelardo Buch Lopez Institute of Nephrology.”

Granma International describes itself as The Official Voice of the Communist Party of Cuba Central Committee.

As for the quality of the medical schools,

“…Cuba trains young physicians worldwide in its Latin American School of Medicine (ELAM). Since its inception in 1998, ELAM has graduated more than 20,000 doctors from over 123 countries. Currently, 11,000 young people from over 120 nations follow a career in medicine at the Cuban institution.”  You can read more about ELAM in Salim Lamrani’s blog in the 8/8/14 edition of The Huffington Post at http://www.huffingtonpost.com/salim-lamrani/cubas-health-care-system-_b_5649968.html

Yesterday, I stumbled upon this which is also from Granma: “The Cuban Institute of Nephrology is celebrating its 50th anniversary this December 1st, having provided more than 5,000 kidney transplants and 3,125 patients with dialysis.”

So, nephrology is not new to Cuba nor is there a dearth of opportunities to study this specialty. Keep in mind that this is government run health care. There aren’t img_4142any private clinics or hospitals in Cuba.

And how good is that health care system? This is from the 4/9/14 HavanaTimes.org:

“Boasting health statistics above all other countries in Latin America and the Caribbean (and even the United States), Cuba’s healthcare system has achieved world recognition and been endorsed by the World and Pan-American Health Organizations and the United Nations.”

HavanaTimes.org is not part of the government. Some of their writers have been blacklisted, while others have been questioned. Somehow, that makes me feel more secure that their information is not the party line but more truthful. I don’t mean to say the government is dishonest, but I prefer information from private sources in this case.

Before you get your passport in order and book a trip to Cuba for medical reasons, you should know  “…it is not legal for Americans to go to Cuba as medical tourists….” This information is from Cuba Medical Travel Adviser & Guide at http://www.doctorcuba.com/. What I found curious is that it is not illegal for Cuban doctors to treat American patients in Cuba. Do Americans disguise themselves as being from other countries to obtain the low cost, high quality medical treatment Cuba has to offer? How can they do that if a passport is needed to enter the country? Maybe I’m naïve.

img_4213Cuban medicine follows a different model than that of the USA. A general (family) doctor earns about $20 a month with free housing and food.  His or her mornings are spent at the clinic with the afternoons reserved for house calls. Doctors treat patients and/or research. Preventive medicine is the norm with shortages of medication and supplies a constant problem.

You have to remember that I have limited access to information about Cuba (as does the rest of the world), and am not so certain my even more limited Spanish – which is not even Cubano Spanish – and the limited English of the Cubanos I spoke with has allowed me to fully understand the answers I was given to the questions I asked.

It’s been fun sharing what I think I learned with you since it brought the feeling of being in Cuba right back. Can you hear the music?  I’ve got to get up to dance.

Until next week,

Keep living your life!IMG_2979

It’s Unfolding Now

Remember when I was lucky enough to catch the flu just after Christmas? (She wrote sarcastically.) When I went to the Immediate Care facility my doctor is associated with, the doctor there had my records and knew I’d had pleurisy at one time. But now, he ordered a chest x-ray to check for pneumonia. What he found instead was news to me… so, of course, I’m telling you about it.

IMG_2982To quote from the final result report of the X-ray: “There is unfolding of the thoracic aorta.” Huh? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 there’s an explanation of thorax.

“What?  The what? Oh, the thorax. That’s ‘the part of the human body between the neck and the diaphragm, partially encased by the ribs and containing the heart and lungs; the chest’ according to The Free Dictionary at http://www.thefreedictionary.com/thorax.”

Thoracic is the adjective form of thorax; it describes the aorta in this case.

Do you remember what the aorta is? I sort of, kind of did, but figured I’d better make certain before I started writing about it. MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2295 was helpful here.

“The aorta gives off branches that go to the head and neck, the arms, the major organs in the chest and abdomen, and the legs. It serves to supply them all with oxygenated blood. The aorta is the central conduit from the heart to the body.”

Now I get the connection between Chronic Kidney Disease and the aorta. Did you catch “oxygenated blood” in that definition? And what organs oxygenate the blood? IMG_2980Right. Your kidneys. This excerpt from SlowItDownCKD 2015 may help.

““The National Kidney and Urologic Diseases Information Clearinghouse …explains.

‘Healthy kidneys produce a hormone called erythropoietin, or EPO, which stimulates the bone marrow to produce the proper number of red blood cells needed to carry oxygen to vital organs.  Diseased kidneys, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.’”

With me so far? Now, what the heck is an unfolded aorta? I turned to the British site for radiologists, Radiopaedia.org, at https://radiopaedia.org/articles/unfolded-aorta for the definition. “The term unfolded aorta refers to the widened and ‘opened up’ appearance of the aortic arch on a frontal chest radiograph. It is one of the more common causes for apparent mediastinal widening and is seen with increasing age.

It occurs due to the discrepancy in the growth of the ascending aorta with age, where the length of the ascending aorta increases out of proportion with diameter, causing the plane of the arch to swivel.”

thoracic-aortaI purposely left the click through definitions in so you read them for yourself. You know the drill: click on the link while holding down your control key. For those of you who are reading the print version of the blog, just add the definition of aorta to the common terms we know: arch and ascending.

Mediastinal, according to the Merriam-Webster Dictionary at https://www.merriam-webster.com/dictionary/mediastinum is the adjective (describing) form of mediastinum or “the space in the chest between the pleural sacs of the lungs that contains all the tissues and organs of the chest except the lungs and pleurae; also:  this space with its contents.”

Hang on there, folks, just one more definition. I searched for a new site that wouldn’t offer a terribly technical definition of pleura (or pleurae) and found verywell at https://www.verywell.com/pleura-lungs-definition-conditions-2249162.

“The pleura refers to the 2 membranes that cover the lungs and line the chest cavity. The purpose of the pleura is to cushion the lungs during respiration.

The pleural cavity is the space between these 2 membranes and contains pleural fluid.”graduation

Side note: I definitely feel like I’m back teaching a college class again.

Okay, so now we have a bunch of definitions, we’ve put them together as best we can and where does it bring us? Are you ready for this? Nowhere. An unfolding of the thoracic aorta is nothing more than a function of age.

FullSizeRender (2)However, with CKD, it’s somewhere. As was explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, “Hemoglobin is the protein in red blood cells that carries oxygen from the lungs to the rest of the body.”  We’re already not getting enough oxygen due to our poor, declining in function kidneys.

Am I concerned about the unfolding thoracic aorta? No, not at all. It happens with age; I don’t think I can do anything about that. But, the CKD that also lowers our oxygen production? Oh yes, I can – do – and will do something about that by protecting my kidneys as best I can and keeping the remaining kidney function I have.

Kidneys.com, quoted in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, did a nice job of laying out a plan for me to do just that.

“Along with taking your prescribed blood pressure medications, lifestyle changes such as losing weight, exercising, meditating, eating less sodium,  drinking  less  IMG_2982alcohol  and  quitting  smoking  can  help  lower  blood pressure. Better blood pressure control helps preserve kidney function.”

I added using my sleep apnea machine and aiming for eight hours of sleep a night. I also stick to my renal diet – which limits protein, phosphorous, potassium, and sodium (as mentioned by kidney.com) – for the most part and keeping my kidneys hydrated by drinking at least 64 ounces of fluid a day.

Is it hard? I don’t know any more. It’s been nine years. They’re simply habits I’ve developed to live as long as I can and, sometimes, even raise the bottled waterfunction of my kidneys.

When my New York daughter was with us over the holidays, I realized how differently we eat than other people do. My husband has chosen to pretty much eat the way I do. So she actually had to go down to the market to pick up the foods that people ordinarily eat.  It would have been funny if I hadn’t been sick. I would have gone with her and laughed each time I answered, “No,” when she asked, “Do you eat this?”laughing

Until next week,

Keep living your life!

It’s a Miracle!

It’s that time of year again… the time to believe in miracles. There’s the miracle of Mary’s virgin birth at Christmas. And there’s the miracle of the Christmas TreeChanukah oil burning for eight nights instead of the one it was meant to. That got me to thinking about miracles and so, we have a different kind of several part blog beginning today. Consider it my gift to you this holiday season.

Miracles happen every day, too. We just need to take action to make them happen… and that’s what I’d like to see us do with Chronic Kidney Disease by sharing the available information.  This particular miracle is helping to alleviate the fear of needing dialysis and/or transplantation. This particular miracle is helping patients help themselves and each other. This particular miracle is helping doctors appreciate involved patients.

Yet, causing this miracle by sharing information is overlooked again and again. Chronic Kidney Disease, or CKD, is easily diagnosed by simple blood tests and urine tests (as we know), but who’s going to take them if they have no idea the disease exists, is widespread, and may be lethal? By Menorahsharing information, those at high risk will be tested. Those already in the throes of CKD can be monitored and treated when necessary. While CKD is not curable, we know it is possible to slow down the progression of the decline in your kidney function.

According to the National Institutes of Health at http://www.ncbi.nlm.gov/pmc/articles/PMC4112688,

“2014: Worldwide, an estimated 200 million people have chronic kidney disease (CKD).”

Before I was diagnosed, I had never heard of this disease… and apparently I’d had it for quite some time.  Why weren’t people sharing information about this?  Couldn’t that have prevented my developing it? At the time of my diagnose nine years ago, I meant doctors.  I don’t anymore. Nor do I leave causing a miracle by sharing to others.

This is my life. I have had Chronic Kidney Disease for nine years. As a college instructor who taught Research Writing at the time of my diagnose, I researched, researched, and researched again, but the only person I was sharing my research with was the nephrologist who treated me and FullSizeRender (2)monitored my condition. I may have expected a miracle there, but I didn’t get one. Why?

I got to thinking about that and realized he already knew what I told him. That’s when it struck me that if I expected a miracle with CKD, I would have to start sharing this information with the people who need it: the ones who didn’t know, the ones who had just been diagnosed and were terrified, and the families of those with CKD who didn’t know they also might be at risk. I went so far as to bring CKD education to the Native American Communities in Arizona since Native Americans are at high risk. I had the information and had experts willing to come to the communities to share that information.

We all know this is a costly, lethal disease if not caught early and treated… and that it’s not just the elderly who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it. We know CKD can be treated, just not the way those who don’t have it might expect. A diet with restrictions on protein, potassium, phosphorous and sodium may be one aspect of that treatment. Exercise, adequate sleep, and avoiding stress are some of the other aspects. Some patients – like me – may have to take medication for their high blood pressure since that also affects kidney function. Imagine preventing a death with lifestyle changes. Now imagine EXPECTING the miracle of preventing that death by sharing this information. Powerful, isn’t it?

We know the basic method of diagnosing CKD is via routine blood and urine tests. Yet, many people do not undergo these tests during doctor or clinic visits, so don’t know they have Chronic Kidney Disease, much less start treating it.urine container

This is where the miracle I expected in my life began for me. I started speaking with every doctor of any kind that I knew or that my doctors knew and asked them to share the information. They were already experiencing time constraints, but suggested I write a fact sheet and leave it in their waiting rooms since they agreed there’s no reason to wait until a person is in kidney failure and needs dialysis or a transplant to continue living before diagnosing and dealing with the illness.

My passion about producing this miracle multiplied threefold from that point on. So much so that I went one better and wrote a book with the facts. I was convinced we would be able to cause a miracle by sharing information about this disease. My goal was clear: have everyone routinely tested.

Dr. Robert  Provenzano, a leading nephrologist in the United States,  succinctly summed up the problem worldwide.

“Chronic Kidney Disease is an epidemic in the world…. As other countries become Westernized, we find the incidence of Chronic Kidney Disease and end-stage renal failure increases. We see this in India, and in China. We see this everywhere. …”

We repeatedly see diabetes and hypertension cited as the two major causes of CKD. Does your neighbor know this? How about the fellow at the gas bp cuffstation? Ask them what Chronic Kidney Disease is. More often than not, you’ll receive a blank look – one we can’t afford if you keep the statistic at the beginning of this paper in mind. We can cause a miracle to change this.

Sharing can be the cause of that miracle… but that’s not something we can leave to the other guy. We each ARE the other guy. More on this next week.

For now, Merry Christmas, Happy Chanukah, Happy Kwanzaa (somehow implicit in this holiday is the miracle of bringing people together), and every other holiday I’ve inadvertently missed or don’t know about.

portal_in_time_cover_for_kindleI just got word that Portal in Time – my first novel – is available on Amazon.com. Consider that as a holiday gift for those friends not interested in CKD. Of course, I just happen to have four CKD books on Amazon.com for those who might be interested in CKD. Be part of a miracle.IMG_2979

Until next week,

Keep living your life!

Never Too Old to Learn

CoffeeCupPopCatalinStockLast week, we were delighted to have an overnight guest we hadn’t seen for a year or two. While we were all waking ourselves up the next morning, I asked him if he’d like some coffee.  Yep, he’s my family; that look of delight on his face when he thought of coffee confirmed it. Then I asked if he took milk in his coffee. Hmmm, more confirmation: he passed on the milk claiming lactose intolerance, another family trait. But when we got to the sugar question, he startled me. His response was something like no thanks, I have high cholesterol. After a moment of stunned silence, I asked why he connected cholesterol and sugar. He said his doctor told him to cut down on sugars to lower his cholesterol. Hmmm, very interesting.

This is the definition of cholesterol from What Is It and How Did I Get It? Early Stage Chronic Early Disease:FullSizeRender (2)

While the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel.

If that doesn’t ring a bell, here’s the definition of dyslipidemia:

Abnormal levels of cholesterol, triglyceride or both

Now we know there’s a normal and an abnormal level of cholesterol and that can’t be good. Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti, one of leading nephrologists in the U.S., explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.

IMG_2982Good  control  of  blood  sugar, blood pressure, cholesterol levels and body weight can delay the loss of kidney function.

I repeat, “…can delay the loss of kidney function.” That has been your ultimate goal since you were diagnosed, hasn’t it?

You may become confused by the three different kinds of cholesterol readings when you see the results of your blood tests.  I know I was, so I researched them and then wrote about them in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2.

HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol. LDL is Low Density Lipoprotein or the ‘bad’ kind that can clog your arteries. VLDL is Very Low Density Lipoprotein and one of the bad guys, too. It contains more triglycerides than protein and is big on clogging those arteries.FullSizeRender (3)

Wait a minute. Where did triglycerides come into this? According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/high-blood-cholesterol/in-depth/triglycerides/ART-20048186

Triglycerides and cholesterol are separate types of lipids that circulate in your blood. Triglycerides store unused calories and provide your body with energy, and cholesterol is used to build cells and certain hormones. Because triglycerides and cholesterol can’t dissolve in blood, they circulate throughout your body with the help of proteins that transport the lipids (lipoproteins).

Still with me?  Good, because you can do something about this.

cholestero

Sometimes, it’s as simple as lifestyle changes like adjusting your diet. While I don’t agree with all of this advice, DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/lowering-cholesterol-with-chronic-kidney-disease/e/5304 can get you started.

  •  Avoid foods high in saturated fat and cholesterol such as whole milk, cheese and fat from meat.
  • Bake, grill, broil and roast your poultry, fish and meat. Choose lean cuts of meat and trim off any fat.
  • Eggs are an excellent source of protein, but the yolks are high in cholesterol. Try egg substitutes like Egg Beaters® or Scramblers®, or substitute two egg whites for a whole egg.
  • Eat at least two servings of fish every week. Salmon, tuna, herring and trout contain good amounts of omega-3 fatty acids that lower your risk of heart disease.
  • Try spreads like Benecol® or Take Control® in place of butter or margarine. Plant sterols and stanols in these spreads help lower cholesterol levels.
  • Choose oils that are high in mono- and polyunsaturated fats: canola, olive, peanut, corn, safflower, soybean and sunflower.
  • Read food labels and try to eliminate foods with trans-fats (found in hydrogenated oils, margarine and many commercially prepared snack foods).
  • Eat kidney-friendly fruits and vegetables.water melon

Of course, if you’re diabetic or prediabetic, you need to modify these suggestions for your diet.

As was suggested in this Everyday Health article (http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx) included in SlowItDownCKD 2015, exercise will help.

       Try these exercise options to help shed pounds and manage high cholesterol:

  • Walking
  • Jogging or running
  • Swimming
  • Taking an aerobics class
  • Biking
  • Playing tennis, basketball, or other sports
  • Using weight machines or lifting free weights to build muscle tone

statinsIf life style changes don’t work for you, your doctor may prescribe a statin.  The Merriam-Webster Dictionary at http://www.merriam-webster.com/dictionary/statin defines this as:

any of a group of drugs (as lovastatin and simvastatin) that inhibit the synthesis of cholesterol and promote the production of LDL-binding receptors in the liver resulting in a usually marked decrease in the level of LDL and a modest increase in the level of HDL circulating in blood plasma

There are substantial arguments against taking statins, but there are also substantial arguments for taking them.  This is something you have to discuss with your doctors since you have a unique medical condition.

Finally, sugar. What did my cousin’s doctor mean about sugar’s role in lowering his cholesterol? This was news to me, so I researched. Sure enough, my cousin’s doctor was right.  According to Progressive Health at http://www.progressivehealth.com/sugar-may-be-the-cause-of-your-elevated-cholestero.htm:

Sugar is a good example of a carbohydrate with high glycemic index. It can, therefore, increase the amount of small, dense LDL particles in the blood.

Although, health experts used to advocate that we cut the amount of sugar we consume because high blood sugar can cause insulin resistance and increase the risk of diabetes, there is now another reason to cut down on our sugar consumption.sugar

A number of studies show that sugar can affect the kind and amount of cholesterol released into the blood.

So? According to the US National Library of Medicine National Institutes of Health at https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4297703/

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Medical Individuals

FullSizeRender (2)We all know I write about Chronic Kidney Disease, or CKD, but just what is that? When I wrote What Is It and How Did I Get It? Early Stage Chronic Kidney Disease six years ago, I defined CKD as “Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.” Although I’m not so sure about that “cannot be reversed” any more, this is simple, right?

Well, not exactly. Over the years, many readers have pointed out that they have another form of kidney disease. According to University Kidney Research Organization (UKRO) @ http://ukrocharity.org/kidney-disease/different-types-of-kidney-diseases/, these are all considered kidney disease:

Wait a minute. Chronic means of long duration. Then with the exception (hopefully) of kidney stones, these diseases can all be classified as CKD… but are they when it comes to treatment?

Dr. Joel Topf is a nephrologist who writes a blog of his own (Precious Bodily Fluids @pbfluids.com) and is a member of the eAJKD Advisory Board at American Journal of Kidney Disease. He must make great use of his time because he has helped develop teaching games for nephrology students and has written medical works. (Yeah, I’m impressed with him, too.)

He’s also a Twitter friend. He contacted me the other day about an article in the Clinical Journal of the American Society of Nephrology entitled “The CKD Classification System in the Precision Medicine Era,” which was written by Yoshio N. Hall and Jonathan Himmelfarb. You can read it for yourself on their site, but you’ll need to join it and get yourself a user name and password. I didn’t. Joel sent me the copy I needed.

cjasn

My first reaction to his request was, “Sure!” Then I read the article and wondered if I could handle all the medicalese in it. Several readings later, I see why he asked me to write about it.

I say I have CKD stage 3B. You understand what I mean. So does my nephrologist. That’s due to the KDOQI. As I explained in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, this is The National Kidney Foundation Kidney Disease Outcomes FullSizeRender (3)Quality Initiative which was not put into place until 1997 and then updated only five years later in 2002. It introduced stages and put CKD on the world medical map. By the way, the 2012 revised guidelines helped raised awareness of CKD according to the CJASN article: “…from 4.7% to 9.2% among persons with CKD stages 3 and 4 in the United States ….”

But something is missing. How can my stage 3 CKD be the same for someone who has, say, Nephrotic Syndrome? We may have the same GFR, but are our symptoms the same? Is the progression of our illnesses the same? What about our treatment? Our other test results?

Whoops! A certain someone looking over my shoulder as I type reminded me I need to define GFR. I especially like Medline Plus’s definition that I used in SlowItDownCKD 2015:

“Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes IMG_2980through the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.”

I know, I know, I didn’t explain what “the Precision Medicine Era” is, either. According to the article, “The underlying concept behind the Precision Medicine Initiative is that disease prevention and treatment strategies must take individual variability into account.” Actually, President Obama first used the term in his State of the Union Address last year.

Alrighty now, back to why CKD staging is not necessarily precision medicine. It seems to center on one phrase – individual variability. I was diagnosed at age 60. I’m now almost 70. Where is the age adjustment in my treatment plan? Is there one? What about when I’m 80? 90? We know the body reacts differently to medications as we age. Is my nephrologist taking this into account? Is yours? I’m taking liberties with the definition of individual here; I don’t think the authors meant within the individual, but rather amongst individuals.

I check my husband’s blood test results for his GFR. FOR HIS AGE, he does not have CKD. But here’s another point I’ve been ranting about that’s brought up in this article. Many elders (Oh my! We’re in that category already.) are not being told if they have stage 1 or stage 2 CKD because their doctors age adjust and so don’t consider the results CKD. We’re getting a little esoteric here. Is CKD really CKD if you’ve age adjusted your GFR readings?

My brain is starting to hurt and I haven’t even written about the different diseases yet, although I did allude to them earlier. What impressed me most in this article is this (in discussing four different hypothetical patients): “Each would be classified as having stage 3 CKD with approximately the same eGFR, but it is patently obvious that virtually every aspect of clinical decision making … would greatly differ in caring for these four individuals.”

I have to agree in my layman way. I’m not a doctor, but I know that if you have Polycystic Kidney Disease and I don’t, although our GFR is the same, I cannot receive the same treatment you do and you cannot receive the same treatment I do. Yes, they’re both kidney diseases and both chronic, but they are not the same disease despite our having the same GFR.

stages of CKDThere is no one size fits all here. Nor does there yet seem to be precision. My CKD at 70 is not the same as it was at 60. If I had diabetes, my CKD treatment would be different, too.  I do have hypertension and that has already changed my CKD treatment.

This got me to thinking. How would every nephrologist find the time for this individualized treatment for each CKD patient? And what other tests will each patient need to determine treatment based on his/her UNIQUE form of CKD?IMG_2982

Thanks for the suggestion, Dr. Topf. This was worth writing about.

Until next week,

Keep living your life!

 

A Change is Gonna Come… Or is It?

This has been a confusing week here in the United States. You see, we have a new president-elect. I’m not going to deal with politics in today’s blog, but rather some of the fears we have concerning our health care under this new president. We are Chronic Kidney Disease patients and we have heard so many conflicting rumors.

Let’s start off with a little reassurance in this confusing time. CBS’s Lesley Stahl interviewed President-elect Donald Trump on 60 Minutes yesterday.

youtubeFor those of us who might need some background, CBS is the Columbia Broadcasting System which, of course (It is 2016, after all.), now includes videos as well as live television. You can also find them on YouTube via the specific show’s title. You can hear parts of the interview I wrote about at  https://www.youtube.com/watch?v=_XSo0cH7X1E&t=43s.

According to IMDb (which describes itself as “…the world’s most popular and authoritative source for movie, TV and celebrity content….”) 60 Minutes is:

The oldest and most-watched newsmagazine (sic) on television gets the real story on America’s most prevalent issues. CBS News correspondents contribute segments to each hour long episode…..” 60-minutes

And who is Lesley Stahl?  Bio.com at http://www.biography.com/people/lesley-stahl-20871751 tells us, “Lesley Stahl is an award-winning television journalist. She’s served as co-editor of 60 Minutes and anchored the news program 48 Hours Investigates.” 

These are not my usual sources, nor is this my usual sort of blog. However, it’s the necessary blog today.

Following is the segment of her interview with the president-elect about Obamacare which you may know as the Affordable Care Act (ACA).

“Lesley Stahl: Let me ask you about Obamacare, which you say you’re going to repeal and replace. When you replace it, are you going to make sure that people with pre-conditions are still covered?

Donald Trump: Yes. Because it happens to be one of the strongest assets.

lesley-stahlStahl: You’re going to keep that?

Trump: Also, with the children living with their parents for an extended period, we’re gonna–

Stahl: You’re gonna keep that–

Trump: Very much try and keep that. Adds cost, but it’s very much something we’re going to try and keep.

Stahl: And there’s going to be a period if you repeal it and before you replace it, when millions of people could lose -– no?

Trump: No, we’re going to do it simultaneously. It’ll be just fine. We’re not going to have, like, a two-day period and we’re not going to have a two-year period where there’s nothing. It will be repealed and replaced. And we’ll know. And it’ll be great healthcare for much less money. So it’ll be better healthcare, much better, for less money. Not a bad combination.”

Is he definitive? Is he absolute? No, but what makes this hopeful is that during his campaign he announced, “On day one of the Trump Administration, we will ask Congress to immediately deliver a full repeal of Obamacare.” Thank you to Trump’s campaign website at https://www.donaldjtrump.com/positions/healthcare-reform  for this quote. We can see the softening of that position in the 60 Minutes interview.

IMG_2979

We have pre-existing conditions. We cannot abide with a presidency that doesn’t support healthcare which allows for this. I did say this would be a non-political blog, so no more adamancy from me… if I can help it.

What does the president-elect say about Medicare? Most of us over 65 (That’s me.) have Medicare as our primary insurance. I am lucky enough to have a secondary insurance through my union. How many of the rest of us are? By the way, if Medicare doesn’t pay, neither does my secondary.

Here’s what Trump had to say about Medicare in a rally in Iowa on December 11th of last year:

“So, you’ve been paying into Social Security and Medicare…but we are not going to cut your Social Security and we’re not cutting your Medicare….”download

A little clarification is in order. According to their website at Medicare.gov, “Medicare is the federal health insurance program for people who are 65 or older, certain younger people with disabilities, and people with End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant, sometimes called ESRD).” Then there’s Medicaid. “Medicaid is a joint federal and state program that helps with medical costs for some people with limited income and resources. Medicaid also offers benefits not normally covered by Medicare, like nursing home care and personal care services,” according to their website at Medicare.gov.

But then I found the following in a Forbes article by Janet Novack on 11/10/16 at http://www.forbes.com/sites/janetnovack/2016/11/10/will-president-trump-cut-medicare-and-social-security-as-well-as-taxes/#7115535a43f1

“… two big spending cuts Trump has endorsed— a House Republican plan to cut Medicaid spending by $500 billion over a decade by turning it into a capped “block grant” payment to the states and the “penny a year” plan, which requires that all non-defense, discretionary spending be cut 1% a forbesyear in nominal terms, saving $750 billion over a decade (without, conveniently, spelling out which programs would get chopped).”

I admit it. I am in over my head. Does this mean that while Medicare will pay if you have ESRD, you still may be on the hook for personal care services IF Trump’s capped block grant payment to states comes into being? Does it mean dialysis will be covered, but possibly not a nursing home stay necessitated by something secondary to your dialysis?

I don’t have ESRD, but Medicare (and my secondary insurance) covers my labs and nephrologist’s appointments. Let’s say the cap goes through, I have a UTI – heaven forbid – that causes me to need a nurse (I know, I’m stretching the issue.), but my income has gone way down. Will Medicaid be available?

While I meant to write a reassuring blog today, I think I’ve raised more issues to question instead. I am not a politician, nor am I politically savvy. BUT, I am a Chronic Kidney Disease patient who needs some kind of reassurance that I won’t be left without the coverage I need.stages of CKD

Hey, that’s another thing: whatever happened to Trump’s campaign promise about letting us order less expensive medications from other countries? Did I miss the update on that one?

Until next week,

Keep living your life!

Feeling the Pressure

labor dayFor those of you in the United States, here’s hoping you have a healthy, safe Labor Day.  I come from a Union family. So much so that my maternal grandfather was in and out of jail for attempting to unionize brass workers. That was quite a bit of pressure on my grandmother, who raised the four children and ran a restaurant.

I knew there was more than my personal history with the holiday so I poked around and found this from http://www.usatoday.com/story/news/nation/2016/09/04/labor-day-history/89826440/

“In the late 1800s, the state of labor was grim as U.S. workers toiled under bleak conditions: 12 or more hour workdays; hazardous work environments; meager pay. Children, some as young as 5, were often fixtures at plants and factories.

The dismal livelihoods fueled the formation of the country’s first labor unions, which began to organize strikes and protests and pushed employers for better hours and pay. Many of the rallies turned violent.

On Sept. 5, 1882 — a Tuesday — 10,000 workers took unpaid time off to march in a parade from City Hall to Union Square in New York City as a tribute to American workers. Organized by New York’s Central Labor Union, It was the country’s first unofficial Labor Day parade. Three years later, some city ordinances marked the first government recognition, and legislation soon followed in a number of states.”

Now that’s pressure, but I want to write about another kind of pressure today: your blood pressure.Mahomeds Sphygmograph

Being one of those people who is required to check their blood pressure at least once a day, I was surprised to learn that doctors didn’t realize the importance of maintaining moderate blood pressure until the 1950s. Yet, ancient Chinese, Greeks, and Egyptians knew about the pulse. I wonder what they thought that was.

The American Heart Association explains the difference between the blood pressure and the pulse, and offers a chart to exemplify. The column without the heading refers to ‘Heart Rate.’

Blood Pressure
What is it? The force the heart exerts against the walls of arteries as it pumps the blood out to the body The number of times your heart beats per minute
What is the unit of measurement? mm Hg (millimeters of mercury) BPMs (beats per minute)
What do the numbers represent? Includes two measurements:
Systolic pressure
(top number):
 The pressure as the heart beats and forces blood into the arteries
Diastolic pressure
(bottom number):
 The pressure as the heart relaxes between beats
Includes a single number representing the number of heart beats per minute
Sample reading 120/80 mm Hg 60 BPM

You can read more about this at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Blood-Pressure-vs-Heart-Rate_UCM_301804_Article.jsp.

bp cuffAccording to Withings, a French company that sells blood pressure monitoring equipment, at http://blog.withings.com/2014/05/21/the-history-of-blood-pressure/:

“The first study on blood circulation was published in 1628 by William Harvey – an English physician. He came to the conclusion that the heart acts as a pump. At that point it wasn’t clear that blood circulated, but after a little calculation he was pretty sure that blood is not ‘consumed’ by the organs. The physician then concluded that blood must be going though (sic) a cycle.”

Ah, but did his measurement include both numbers? In What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I satisfied my own curiosity as to why our blood pressure readings always have two numbers, one atop the other:What is it

“The first number… called the systolic is the rate at which the heart contracts, while the second or diastolic … is when the heart is at rest between contractions.  These numbers measure the units of millimeters of mercury to which your heart has raised the mercy.”

Uh, raised the mercury of what? Well it’s not the sphygmomanometer as we now know it. By the way, this is the connection between blood pressure and Chronic Kidney Disease that I mentioned in SlowItDownCKD 2015:

“I wonder how frustrated Dr. Bright became when he first suspected that hypertension had a strong effect on the kidneys, but had no way to proveIMG_2980 that theory since the first practical sphygmomanometer (Me here: That’s the device that measures your blood pressure.)  wasn’t yet available.”

Well, why is hypertension – high blood pressure – important in taking care of your kidneys anyway?  It’s the second leading cause of CKD. The Mayo Clinic succinctly explains why at http://www.mayoclinic.org/diseases-conditions/high-blood-pressure/in-depth/high-blood-pressure/art-20045868

“Your kidneys filter excess fluid and waste from your blood — a process that depends on healthy blood vessels. High blood pressure can injure both the blood vessels in and leading to your kidneys, causing several types of kidney disease (nephropathy). “

Well, how do you avoid it then? One way is to take the pressure off yourself. (As a writer, I’m thoroughly enjoying that this kind of pressure can affect the other kind – the blood pressure. As a CKD patient, I’m not.)

Pressure on yourself is usually considered stress. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, there’s an explanation of what stress does to your body.

FullSizeRender (3)“…we respond the same way whether the stress is positive or negative…. First you feel the fight or flight syndrome which means you are releasing hormones.  The adrenal glands which secrete these hormones lay right on top of your kidneys. Your blood sugar raises, too, and there’s an increase in both heart rate and blood pressure.  Diabetes {High blood sugar} and hypertension {High blood pressure} both play a part in Chronic Kidney Disease. If you still haven’t resolved the stress, additional hormones are secreted for more energy.”

What else? This list from the American Kidney Fund was included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:IMG_2982

  • Eat a diet low in salt and fat
  • Be physically active
  • Keep a healthy weight
  • Control your cholesterol
  • Take medicines as directed
  • Limit alcohol
  • Avoid tobacco

AKF logo Why am I not surprised at how much this looks like the list for healthy kidneys?

I was just thinking: what better day to start working on this list than Labor Day?

Until next week,

Keep living your life!

 

 

The Nutrition Action Health Letter Article

I am now officially excited.  I’d been getting some comments about this article which I thought wasn’t being published until September. I wondered why. It was my mistake. The article was to appear in the September issue, which I didn’t realize is published before the month begins.

The Center for Science in the Public Interest’s September Nutrition Action Health Letter is out… and younutrition can read it online, too. The URL is http://www.nutritionaction.com/wp-content/uploads/cover-Kidney-Check-How-to-Keep-Yours-Going-Strong.pdf. Many thanks to Bonnie Liebman for such a fine job of reporting and aiding in spreading Chronic Kidney Disease Awareness. It’s long, six pages, so what we have here are excerpts.

 

David White“I didn’t know that I had end-stage renal disease until I was admitted to the hospital in 2009,” says David White, who was then in his mid-40s. “A few days later, I stopped producing urine.”

Doctors told White that he had crashed. “It was scary,” he says. “I went from ‘Something may be wrong’ to ‘Oh my god am I going to die?’ to ‘I have to spend the rest of my life on dialysis.’”

And with four hours of dialysis three times a week, he never felt great.

“People call it the dialysis hangover,” says White, from Temple Hills, Maryland. “You’re so tired that you want to sleep all day after dialysis and most of the following day. And then you gear up for the next treatment.”

And White struggled with his one-quart-a-day limit on fluids. “When you drink too much, moving isn’t comfortable, laying down isn’t comfortable,” he says. “It’s hard to breathe.”

For Gail Rae-Garwood, the news about her kidneys came when she switched to a new doctor closer to herNutrition home in Glendale, Arizona.

“She decided that as a new patient, I should have all new tests,” says Rae-Garwood, now 69. “When the results came in, she got me an appointment with a nephrologist the next day. When you get an appointment with a specialist the next day, you know something is not right.”

Rae-Garwood had chronic kidney disease. “My GFR was down to 39, and apparently had been low for quite a while,” she says. (Your GFR, or glomerular filtration rate, is the rate at which your kidneys filter your blood.) “‘What is chronic kidney disease and how did I get it?’ I demanded,” recalls Rae-Garwood.

Every 30 minutes, your kidneys filter all the blood in your body. Without at least one, you need dialysis or a transplant. Yet most people have no idea how well their kidneys are working. “It’s very common for people to have no idea that they have early chronic kidney disease,” says Alex Chang, a nephrologist at Geisinger Health System in Danville, Pennsylvania.

A routine blood test sent to a major lab—like Quest or LabCorp—typically includes your GFR. If it doesn’t, your doctor can calculate it.

kidney function“A GFR is pretty routine for anyone who has blood work done,” says Chang. “But if you have very mild kidney disease, and especially if you’re older, a doctor might not mention it since kidney function tends to decline as you age.”

Doctors also look for kidney disease by testing your urine for a protein called albumin …. “That’s usually only done if you have high blood pressure or diabetes or some risk factor for kidney disease other than age,” says Chang.

Rae-Garwood’s previous doctor missed that memo. “I had been on medication for high blood pressure for decades,” she explains. “I wonder how much more of my kidney function I could have preserved if I’d known about it earlier.”

***

David White had kidney transplant in 2015. “It’s given me my life back,” he says. “No more dialysis.”

He takes anti-rejection drugs and steroids, and, like Rae-Garwood, he gets exercise and has to watch what he eats.

“I’ve changed my diet radically,” says Rae-Garwood. “I have to limit the three P’s—protein, potassium, What is itand phosphorus. I’m restricted to 5 ounces of protein a day. We have no red meat in the house. Any product above 7 or 8 percent of a day’s worth of sodium I don’t buy.

“And you know what? It’s fine. It’s been nine years now, and I’ve been able to keep my GFR around 50.”

Both patients are now advocates for preventing kidney disease. “I’ve written four books and almost 400 weekly blogs, and I post a daily fact about chronic kidney disease on Facebook,” says Rae-Garwood. White chairs the the MidAtlantic Renal Coalition’s patient advisory committee, among other things among other things.

“Get tested,” urges Rae-Garwood. “Millions of people have chronic kidney disease and don’t even know it. All it takes is a blood and urine test.”

My hope is that as a result of this article, more libraries, medical schools, and nephrology practices will IMG_2982order copies of What Is It and How Did I Get It? Early Stage Chronic Kidney FullSizeRender (3)Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, and SlowItDownCKD 2015. If you have a Kindle, Amazon has two wonderful low cost or free programs that may make it easier for you, your loved ones, and anyone you think could benefit from these books to read them.

This is how Amazon explains these programs:

“Kindle Unlimited is a subscription program for readers that allows them to read as many books as they want. The Kindle Owners’ Lending Library is a collection of books that Amazon Prime members who own a Kindle can choose one book from each month with no due dates.”

Barnes and Noble doesn’t have any such programs, but they do offer discount deals daily, which you can use to purchase any book.IMG_2980

I urge you to help spread awareness of Chronic Kidney Disease in any way you can. Here’s another quote from the article that may help you understand why:

“One out of ten adults have chronic kidney disease. Most don’t know it because early on, kidney disease has no symptoms. And because the risk rises as you age, roughly one out of two people aged 30 to 64 are likely to get the disease during their lives….”

Until next week,

Keep living your life!

Maybe for You, But Not for Me

hairLast week, when I wrote about thinning hair, I received loads of suggestions. While I was pleased with all the interaction, it was clear to me that we had people answering from three different positions: pre-dialysis (like me at Stage 3 Chronic Kidney Disease), dialysis, and post-transplant. What also became clear is that the ‘rules’ for each position are different. That got me to wondering.

But first, I think a definition of each of these is necessary. My years teaching English ingrained in me that ‘pre’ is a prefix meaning before; so pre-dialysis means before dialysis. In other words, this is CKD stages 1-4 or 5 depending upon your nephrologist. It’s when there is a slow progression in the decline of your kidney function.

I remembered a definition of dialysis that I liked in SlowItDownCKD 2015, and so, decided to repeat it here.IMG_2980

“According to the National Kidney Foundation at https://www.kidney.org/atoz/content/dialysisinfo,

‘Dialysis is a treatment that does some of the things done by healthy kidneys. It is needed when your own kidneys can no longer take care of your body’s needs. There are several different kinds of dialysis. Basically, they each eliminate the wastes and extra fluid in your blood via different methods.’”

And post -transplant?  Simply put, it means after having had an kidney (or other organ) placed in your body to replace one that doesn’t work anymore.

I know as a pre-dialysis that I have certain dietary restrictions.  Readers have told me some of theirs and they’re very different. It’s not the usual difference based on lab results that will tell you whether you need to cut back more on one of the electrolytes this quarter. It seemed like an entirely different system.

FullSizeRender (2)Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see what my basic dietary restrictions as a pre-dialysis CKD patient are.

 “The (e.g. renal) diets seem to agree that protein, sodium, phosphorus and potassium need to be limited. … Apparently, your limits may be different from mine or any other patient’s.  In other words, it’s personalized.”

Well, what about those on dialysis? What do their dietary guidelines look like? I found this in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Knowing End Stage Renal Disease is not my area of expertise, I took a peek at National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), A service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)National Institutes of Health (NIH), at http://kidney.niddk.nih.gov/KUDiseases/pubs/eatright/index.aspx#potassium anyway to see what dialysis patients can eat.

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep FullSizeRender (3)the right amount of potassium in the blood to keep the heart beating at a steady pace. Potassium levels can rise between dialysis sessions and affect your heartbeat. Eating too much potassium can be very dangerous to your heart. It may even cause death.”

I suspected that potassium is not the only dietary problem for dialysis and dug a bit more.  I discovered this information on MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=78054, along with the caveat that these also need to be individualized as per lab results.

  1. Fluids: Allowance is based primarily on the type of dialysis and urine output. If you have any edema, are taking a diuretic, and/or have congestive heart failure, your allowance will be adjusted.
  2. Sodium: This will be modified to maintain blood pressure and fluid control and to help prevent congestive heart failureand pulmonary edema.
  3. Potassium: Your intake of this will be adjusted to prevent your blood levels from going too high or too low.
  4. bananaPhosphorus: The majority of dialysis patients require phosphate binders and dietary restrictions in order to control their blood phosphorus levels.
  5. Protein: Adequate protein is necessary to maintain and replenish your stores. You may be instructed on increasing your intake now that you are on dialysis.
  6. Fiber: There is a chance that constipation may be a problem due to fluid restrictions and phosphate binders, so it’s important to keep fiber intake up. You will need guidance on this because many foods that are high in fiber are also high in potassium.
  7. Fat: Depending on your blood cholesterol levels, you may need to decrease your intake of trans fat, saturated fat, and cholesterol.
  8. Calories: If you are over or underweight, you will be instructed on adjusting the amount of calories that you take in each day.
  9. Calcium: Most foods that contain calcium also contain phosphorus. Due to your phosphorus restrictions, you will need guidance on how to get enough calcium while limiting your intake of phosphorus.

Big difference here!  More protein, less calcium, phosphate binders, fat and calcium. No wonder the responses I got to last week’s blog were so varied.

And post-transplant? What about those dietary restrictions? The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/kidney-transplant/manage/diet-nutrition/nuc-20209734 has that one covered, with the same warning as the other two groups’ diets: your labs dictate your amounts.

  • Eating at least five servings of fruits and vegetables each dayfruits and veggies
  • Avoiding grapefruit and grapefruit juice due to its effect on a group of immunosuppression medications (calcineurin inhibitors)
  • Having enough fiber in your daily diet
  • Drinking low-fat milk or eating other low-fat dairy products, which is important to maintain optimal calcium and phosphorus levels
  • Eating lean meats, poultry and fish
  • Maintaining a low-salt and low-fat diet
  • Following food safety guidelines
  • Staying hydrated by drinking adequate water and other fluids each day

So it looks like you get to eat more servings of fruits and vegetables a day, must avoid grapefruit and its juice, and be super vigilant about calcium and phosphorus levels. Notice the same suggestion to have enough fiber in your diet as when on dialysis.

Whoa! We have three different sets of diet guidelines for three different stages of CKD, along with the strict understanding that everything depends upon your lab results. That means that the post-transplant patients were right – for them – that I needed more protein.  And the dialysis patients were right – for them – too. But for the pre-dialysis patients? Nope, got to stay below five ounces daily. IMG_2982

Until next week,

Keep living your life!

The American Kidney Fund Blog

AKF logoI was honored that The American Kidney Fund (www.kidneyfund.org) asked me to write a blog for them. This is that blog. Once it was published last Thursday, I started thinking. If you share the blog and ask those you shared with to share it, too, and they asked their friends to share it, too… image how many people would become aware of Chronic Kidney Disease. Will you do that?

Slowing Down CKD—It Can Be Done

When a new family doctor told me nine years ago that I had a problem with my kidneys—maybe chronic kidney disease (CKD)–my first reaction was to demand, “What is it and how did I get it?”

No doctor had ever mentioned CKD before.

I was diagnosed at stage 3; there are only 5 stages. I had to start working to slow it down immediately. I wanted to know how medication, diet,stages of CKD exercise and other lifestyle changes could help. I didn’t want to be told what to do without an explanation as to why… and when I couldn’t get an explanation that was acceptable to me, I started researching.

I read just about every book I could find concerning this problem. Surprisingly, very few books dealt with the early or moderate stages of the disease.  Yet these are the stages when we are most shocked, confused, and maybe even depressed—and the stages at which we have a workable chance of doing something to slow down the progression in the decline of our kidney function.

I’ve learned that 31 million people—14 percent of the population—have CKD, but most don’t know they have it. Many, like me, never experienced any noticeable symptoms. Many, like me, may have had high blood pressure (hypertension) for years before it was diagnosed. Yet, high blood pressure and diabetes are the two leading causes of CKD.

I saw a renal dietician who explained to me how hard protein is on the kidneys… as is phosphorous… and potassium… and, of course, sodium. Out bananawent my daily banana—too high in potassium. Out went restaurant burgers—larger than my daily allowance of protein. Chinese food? Pizza? Too high in sodium. I embraced an entirely new way of eating because it was one of the keys to keeping my kidneys functioning in stage 3.

Another critical piece of slowing down CKD is medication. I was already taking meds to lower my blood pressure when I was first diagnosed with CKD. Two more prescriptions have been added to this in the last nine years: a diuretic that lowers my body’s absorption of salt to help prevent fluid from building up in my body (edema), and a drug that widens the blood vessels by relaxing them.

For a very short time, I was also taking a drug to control my pre-diabetes, but my doctor and I achieved the same effects by changing my diet even more. (Bye-bye, sugars and most carbs.) The funny thing is now my favorite food is salad with extra virgin olive oil and balsamic vinegar. I never thought that would happen: I was a chocoholic!

Exercise, something I loved until my arthritis got in the way, was also important. I used to dance vigorously several nights a week; now it’s once a week with weights, walking, and a stationary bike on the other days. I think I took sleep for granted before CKD, too, and I now make it a point to blues dancersget a good night’s sleep each day. A sleep apnea device improved my sleep—and my kidney function rose another two points.

I realized I needed to rest, too. Instead of giving a lecture, running to an audition, and coming home to meet a deadline, I slowly started easing off until I didn’t feel like I was running on empty all the time. I ended up happily retiring from both acting and teaching at a local college, giving me more time to work on my CKD awareness advocacy.

I was sure others could benefit from all the research I had done and all I had learned, so I wrote my first book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, in 2011. I began a blog after a nephrologist in India told me he wanted his newly diagnosed patients to read my book, but most of them couldn’t afford the bus fare to the clinic, much less a book. I published each chapter as a blog post. The nephrologist translated my posts, printed them and distributed them to his patients—who took the printed copies back to their villages. I now have readers in 106 different countries who ask me questions I hadn’t even thought of. I research for them and respond with a blog post, reminding them to speak with their nephrologists and/or renal nutritionists before taking any action… and that I’m not a doctor.

What is itEach time I research, I’m newly amazed at how much there is to learn about CKD…and how many tools can help slow it down. Diet is the obvious one. But if you smoke or drink, stop, or at least cut down. If you don’t exercise, start. Adequate, good quality sleep is another tool. Don’t underestimate rest either; you’re not being lazy when you rest, you’re preserving whatever kidney function you have left. I am not particularly a pill person, but if there’s a medication prescribed that will slow down the gradual decline of my kidney function, I’m all for it.

My experience proves that you can slow down CKD. I was diagnosed at stage 3 and I am still there, nine years later. It takes knowledge, commitment and discipline—but it can be done, and it’s worth the effort. I’m sneaking up on 70 now and know this is where I want to spend my energy for the rest of my life: chronic kidney disease awareness advocacy. I think it’s just that important.

IMG_1398SlowItDownCKD 2015 Book Cover (76x113)

 

SlowItDownCKD is the umbrella under which Gail Rae-Garwood writes her CKD books and blog, offers talks, participates in book signings, is interviewed on podcasts and radio shows, and writes guest blogs. Her website is www.gail-raegarwood.com.

Until next week,

Keep living your life!

We, the People Who Have CKD…

Happy Independence Day! Here in the United States, we usually celebrate with fireworks and bar-b-ques that may include renal friendly foods, at fireworksleast at my house. We take our pets inside and try to shield them from the sounds of the fireworks that make them so uncomfortable and then we try to enjoy the heat, the sun, and the parades.

I’m all for Independence Day celebrations, but shy away from them myself. I’m like our pets; I can do without the noise. Since getting older (or medically ‘elderly,’ which always gives me a giggle), I can also do without the heat and the crowds. We used to have renal friendly bar-b-ques at our house, but now our kids are older and visit fiancés, go to bachelorette weekend celebrations, or go camping in other states during this long holiday weekend.

And I realize I do not want to be that far from what is euphemistically called a ‘restroom’ here in Arizona for all that long. There could be many reasons for that, my elderly state (Humph!); a urinary tract infection (UTI); a weak bladder; or interstitial cystitis.

A reader and good online friend – another Texas connection, by the way – asked me to write about interstitial cystitis today. There seems to be some confusion among us – meaning Chronic Kidney Disease patients – between chronic UTIs and interstitial cystitis.Digital Cover Part 2 redone - Copy

UTI is a descriptive term we probably all know since we have CKD and have to be aware of them. We have to be careful they don’t spread to the bladder and, eventually (but rarely), to the kidneys.  That can cause even more kidney damage. I explained a bit more in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“The second nephrologist to treat me referred me to an urologist when he realized I was on my fifth UTI in the same summer and he suspected this one had spread to my bladder. The urologist actually had me look through the cystoscope (I’m adding this today: a sort of long, narrow tube inserted to view both the urethra and bladder) myself to reassure me that the lower urinary tract infection had not spread to the upper urinary tract where the bladder is located.”

We know we have to be vigilant.  That’s where interstitial cystitis comes in. Let’s take a look at SlowItDownCKD 2015 for more information about cystitis:

“Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

‘Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….

SlowItDownCKD 2015 Book Cover (76x113)Bladder infections are not serious if treated right away. But they tend to come back in some people. Rarely, this can lead to kidney infections, which are more serious and may result in permanent kidney damage. So it’s very important to treat the underlying causes of a bladder infection and to take preventive steps to keep them from coming back.’”

Okay so we get the cystitis part of the condition, but what does interstitial mean? MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=9587defines it this way:

“Pertaining to being between things, especially between things that are normally closely spaced. The word interstitial is much used in medicine and has specific meaning, depending on the context. For instance, interstitial cystitis is a specific type of inflammation of the bladder wall.”

Hang on, just one more definition. This one is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/interstitial-cystitis/basics/definition/con-20022439

“Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) — also called painful bladder syndrome — is a chronic condition in which you experience bladder pressure, bladder pain and sometimes pelvic pain, ranging from mild discomfort to severe pain. Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it’s full and then signals your brain that it’s time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people. With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people….”bladder

Hmmm, then this is clearly not a UTI. So why do we have to be careful about it? Time to look at the causes – or not. According to The National Institute of Diabetes, Digestive, and Kidney Diseases at http://www.niddk.nih.gov/health-information/health-topics/urologic-disease/interstitial-cystitis-painful-bladder-syndrome/Pages/facts.aspx,

“Researchers are working to understand the causes of IC/PBS and to find effective treatments.

…Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.”

* IC means interstitial cystitis; PBS is painful bladder syndrome

Maybe we should be looking at the cure instead – or not. “At this time there is no cure for interstitial cystitis (IC).” But ichelp does mention a number of possible treatments, some of which we cannot use as CKD patients since they may harm the kidneys. Take a look for yourself at: http://www.ichelp.org/diagnosis-treatment/

Whoa! No definitive cause, no cure, and treatments which may harm our kidneys. Where’s the good news in this?  Take another look at the information from The National Institute of Diabetes, Digestive, and Kidney Diseases again. Notice the word ‘inflammation’?

Bingo. CKD is also an inflammatory disease and may be that “more general condition that causes inflammation in various organs and parts of the body.” Wait, I just remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:DIGITAL_BOOK_THUMBNAIL

“Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.  By the way, it’s said that alkaline foods are a better way of eating should cancer rear its ugly head in your life.”

So it all comes back to inflammation.  Say, didn’t I recently write a blog about acidity vs. alkaline and inflammation?  Now there’s a good way to avoid the heat, the sun, and the parades of Independence Day. Stay inside (maybe while someone is bar-b-queuing renal friendly food outside) and peruse old blog posts.

What is itUntil next week,

Keep living your life!

Bridging the Gap…

Which gap? The anion. What’s that, you say.

“The anion gap deals with the body’s acidity. A high reading for the anion gap could indicate renal failure.”

Book CoverThat’s what I wrote in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. But you know what? It’s just not enough information any more. Why? I’m glad you asked.  Oh, by the way, if you want to check your own reading look in the Comprehensive Metabolic Panel part of your blood tests, but only if your doctor requested it be tested.

I mentioned a few blogs back that I returned to a rheumatologist I hadn’t seen in years and she chose to treat me as a new patient. Considering how much had happened medically since I’d last seen her, that made sense to me and I agreed to blood tests, an MRI, and a bone density test.

The only reading that surprised me was an abnormally high one for anion gap. The acceptable range is 4 – 18. My reading was 19.  While I have Chronic Kidney Disease, my kidneys have not failed (Thank goodness and my hard work.) In addition, I’ve become quite aware of just how important acidity and alkaline states are and have been dealing with this, although apparently not effectively.

MedFriendly at http://www.medfriendly.com/anion-gap.html – a new site for me written by Dr. Dominic Carone for the express purpose of simplifying complex medical terms for the lay person – explains it this way:diabetes equipment

“…. Too high of an anion gap level can mean that there is acidosis (too much acid in the blood) due to diabetes mellitus. The high anion gap level can also be due to lactic acidosis, in which the high level of acid is due a buildup of a substance called lactic acid. … A high anion gap can also be due to drug poisoning or kidney failure. …When the anion gap is high, further tests are usually needed to diagnose the cause of the problem.”

Ah, I remember writing a bit about acidosis in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. It had to do with DIGITAL_BOOK_THUMBNAILfruits and vegetables.

“’After three years, consuming fruits and vegetables or taking the oral medication reduced a marker of metabolic acidosis and preserved kidney function to similar extents. Our findings suggest that an apple a day keeps the nephrologist away,’ study author Dr. Nimrit Goraya, of Texas A&M College of Medicine, said in a university news release.

Apparently, some CKD suffers have metabolic systems that are severely acidic. Fruits and vegetables are highly alkaline.  This may counteract the acidity in the patients mentioned above AND those that have less metabolic acidosis (acid in the body).

You can find the complete article at http://kidneygroup.blogspot.com/2012/11/eating-fruits-and-vegetables-may-help.html

Okay, I like fruit and I like vegetables. Ummm, will my limitation of three servings of each within the kidney friendly fruit and vegetable lists do the trick, I wonder. Looks like I’ll be questioning both the rheumatologist and the renal dietician about that.

Recently I’ve written about alkaline being the preferred state of a CKD patient’s body. That is the antithesis of an acid body state. Years ago, Dr. Richard Synder was a guest blogger here and also interviewed me on his radio show. He is the author of What You Must Know about Kidney Disease and a huge proponent of alkaline water.  Here’s what he had to say about that (also from Part 1):

“I have taken alkaline water myself and I notice a difference in how I feel. Our bodies are sixty percent water. Why would I not want to put the best517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_ type of water into it? Mineralized water helps with bone health.  In alkalinized water, the hydroxyl ions produced from the reaction of the bicarbonate and the gastric acid with a low pH produce more hydroxyl ions which help buffer the acidity we produce on a daily basis. (Me interrupting here: During our visit last Monday, I noticed that my extremely health conscious, non-CKD, Florida friend drinks this.)

Where are these buffers? In the bones and in the cells, as well as some extracellular  buffers. You  are  helping lower  the  total  body  acidity  and decreasing the inflammation brought on by it. You do this early on so that you don’t have a problem with advanced acidosis later. Why wait until you are acidotic before doing something?”

Notice his comment about lowering body acidity and decreasing inflammation.  We already know CKD is an inflammatory disease.  There was Digital Cover Part 2 redone - Copysomething to this. I went back to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 to tease it out.

“‘Belly fat is also much more inflammatory than fat located elsewhere in the body and can create its own inflammatory chemicals (as a tumor would).’

You can read the entire article at http://www.huffingtonpost.com/2013/03/21/body-fat-facts_n_2902867.html

Inflammatory?  Isn’t CKD an inflammatory disease? I went to The National Center for Biotechnology Information, which took me to the National Library of Medicine and finally to a National Institute of Health study at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3332073/   for the answer.

‘The persistent inflammatory state is common in diabetes and Chronic Kidney Disease (CKD).

This is a lot to take in at once.  What it amounts to is that another way to possibility prevent the onset of CKD is to lower your phosphorous intake so that you don’t accumulate belly fat.’”

Phosphorous? Once we have CKD, we do have phosphorous restrictions. But I have never had high phosphorous readings.  Maybe I should be exploring an abundance of lactic acid as a cause of the high anion gap reading instead.

According to Heathline.com,

adam_liver_8850_jpg“Lactic acidosis occurs when there’s too much lactic acid in your body. Many things can cause a buildup of lactic acid. These include chronic alcohol use, heart failure, cancer, seizures, liver failure, prolonged lack of oxygen, and low blood sugar. Even prolonged exercise can lead to lactic acid buildup.”

I’m definitely barking up the wrong tree here.

Wait a minute. I recently started using a BiPAP since I have sleep apnea and wasn’t exhaling enough CO2. That could cause acidosis, but it would be respiratory acidosis. Say, a basic metabolic panel would expose that. Nope, that’s not it either since my CO2 levels were normal.

It looks like this is going to be one of those blogs that asks more questions than it answers. I do have an appointment with the rheumatologist on the 20th and will ask for answers then.

Until next week,

Keep living your life!SlowItDownCKD 2015 Book Cover (76x113)

A Cautionary Tale

Last week, I found myself crushed for time: a friend was coming to visit from Florida, we had a Father’s Day brunch at our house, there were Ave Qtheater tickets, one of the kids needed immediate aid since she was in her own time crunch, the list goes on and on. Taking that into account and not wanting to add that old demon ‘stress’ to the list, I thought I’d do a quick, easy blog about acupuncture/acupressure and Chronic Kidney Disease.

But while researching I discovered a number of sites with online doctors and changed my topic immediately. The ones I clicked on were:

I’m sure there are more, but rather than be an alarmist, I want to be an explainer.

Explainer of what you ask. Not acupuncture or acupressure.  There’s a discussion of how acupressure works in the May 4th blog in SlowItDownCKD 2015 Book Cover (76x113)SlowItDownCKD 2015.  Acupuncture works on the same principle, but using very fine needles rather than pressure. I happily and confidently made use of both before my CKD diagnose and only ceased my treatments when the senior acupuncturist working on me told me these treatments would not help with the CKD. That was over nine years ago. He may have changed his opinion since then.

I want to explain why online doctors are not such a great idea. I can practically see some of you rolling your eyes at me while others are thinking, “Why not?” Okay, maybe they’re legal, but are they ethical? I found a fairly straight forward abstract on ResearchGate which states:

“…online medical consultations pose greater dangers to patients compared to traditional off-line consultations…. while new technologies may aid doctors in making better diagnoses at a distance, they often bring new concerns.”

You can read more about this yourself at https://www.researchgate.net/publication/228234723_Online_Medical_Consultations_Legal_Ethical_and_Social_Perspectives

arthritisI find myself struggling here. I am all in favor of online doctor summaries by your doctors, test reports from your labs, and general medication explanations from the internet. However, I simply cannot understand how someone who has never met you, someone who has not examined your body, someone who has never spoken with you can advise you on your health.

I’ve mentioned before that I have psoriasis, arthritis, neuropathy, sleep apnea, and probably a host of other as-yet-undiagnosed-inflammatory based diseases (This might be a good time to reread last week’s blog about inflammation caused disease. Connected) How can someone who’s never met me take all of this into account when dealing with my health?

A perfect example of what I’m talking about is from the IMPRESSIONS section of my rheumatologist’s recent report,

“This is a very complex patient that presents today with generalized myalgias and arthralgia….Her health history is complicated by carpal tunnel syndrome, neuropathy and chronic kidney disease, stage 3.”

She has not missed a trick. Myalgia, according to the Medical Dictionary at http://medical-dictionary.thefreedictionary.com/myalgia is muscular pain. The Mayo Clinic at http://www.mayoclinic.org/symptoms/joint-pain/basics/definition/sym-20050668 tells us arthralgia is joint pain.  So my muscles and joints hurt. Without seeing me, without testing my joints and muscles, without seeing if the joints are disfigured or the muscles flaccid (for example) how could she help me?

I’m not one to take pain killers, especially NSAIDS which are defined in the glossary of What Is It and How Did I Get It? What is itEarly Stage Chronic Kidney Disease.

“NSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

So I have pain and I can tolerate it. I can’t help but wonder what an online doctor would diagnose. I decided to become a test case. I contacted an online doctor from one of the sites listed above. This is the transcript of that online chat, errors and all.

Welcome! This is a real online-doctor, not a robort. If you have any questions on kidney disease, feel free to type your questions, you will surely         get reply. No consultation fee.

If the online doctors are all busy and you can’t get response for a long time, you can contact us by phone or email. (Contact information                       followed.)

renal-onlinedoctor: Hello, I am renal-onlinedoctor, I am very glad to talk with you!

You: I have pain. What do I do about it?

renal-onlinedoctor: hello, your age and gender?

You: 69 female

renal-onlinedoctor:  ok, what is the current kidney function or creatinine level? do you knowonline doc

You: 50%

renal-onlinedoctor:  ok, Any symptoms? foamy urine, swelling, fatigue, back pain, anemia, itching,  etc

You: Just joint and muscle pain.

renal-onlinedoctor: i see. Do you have Diabetes, high blood pressure, or other problem?

You: HBP, neuropathy, arthritis, psoriasis

renal-onlinedoctor:  ok, What are the current medicines or treatment?

You:  Only hbp meds and arthritis meds.

renal-onlinedoctor: okay  i see. I’d like to send you related info and advice. What is your Email address?

At this point, I ended the chat since I thought I might be deluged with emails if I responded.  Have I proven anything? Only that the online portion of dealing with an online doctor is extremely general.

Where are the questions about my weight? As I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

“Keeping your weight down is one of the ways to help retard the progression of the disease.  How? By not allowing yourself to become obese. Obviously, if you keep gaining weight, you can become obese.  Obesity is one of the contributing factors for developing diabetes.  Diabetes may lead to, and complicates, the treatment of, CKD.”IMG_1398

And what about exercise? In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I included the following from the American Kidney Fund:

“Exercise can help you stay healthy.  To get the most benefit, exercise for at least 30 minutes, 5 days of the week.”

Yes, it is possible the online doctor may have included such information in the emails(s) he wanted to send me, but how specific to my unique, complex medical situation would they have been… or how specific to yours?

Until next week,

Keep living your life!

Psoriatic Arthritis on Memorial Day

Memorial DayToday is Memorial Day. I find myself having a hard time saying ‘happy’ and ‘Memorial Day’ together.

For those of you outside of the U.S., this is a holiday started as Decoration Day by freed slaves after our Civil War to commemorate the lives of those who died earning their freedom. Slowly, individual states made this day for decorating graves a holiday and then it became a national one.

I am married to a veteran. There is nothing happy about this holiday, although there is respect and gratitude… at least in my house.

I have respect and gratitude for our living soldiers, too. That brings us to the subject of today’s blog: psoriatic arthritis and Chronic Kidney Disease. A close friend of the family – an Airman – wanted this information for his father. I was happy to oblige him, even more than I usually am to answer readers’ questions since he is military and he asked on Memorial Day.

As usual, we need to go back to the basics here. In this case, that means going back to the blog about psoriasis in The Book of Blogs: ModerateDigital Cover Part 2 redone - Copy Stage Chronic Kidney Disease, Part 2.   That’s where I first wrote the following information about psoriasis:

“…according to Psoriasis.com at http://www.psoriasis.com/what-is-psoriasis.aspx

‘psoriasis is a chronic (long-lasting) disease of the immune system. While the exact cause of psoriasis is unknown, scientists believe the immune system mistakenly activates a reaction in the skin cells, which speeds up the growth cycle of skin cells.’

There are seven types of psoriasis.  The one you are probably familiar with – if you are familiar with any – is plaque psoriasis. WebMD at http://www.webmd.com/skin-problems-and-treatments/psoriasis/psoriasis-types?page=1  tells us:

psorasis‘About eight in 10 people with psoriasis have this type. It is also sometimes known as psoriasis vulgaris. Plaque psoriasis causes raised, inflamed, red skin covered by silvery white scales. These may also itch or burn. Plaque psoriasis can appear anywhere on your body….’

Here’s the most important information in that particular blog for us as CKD patients:

“…doctors now know they need to screen psoriasis patients for CKD, although it seems to be only those patients with over 3% of their bodies affected by psoriasis who have doubled their risk of CKD. With 60% of the population at risk for CKD, it could be that percentage may change once these routine CKD screenings for psoriasis are in place, especially since psoriasis is also so common among every ethnic group.  This, of course, also includes those populations we know are at high risk for CKD.”

But my young Airman friend asked about psoriatic arthritis and Chronic Kidney Disease, so we need to take a look at what arthritis is.

According to The U.S. National Library of Medicine at http://www.ncbi.nlm.nih.gov/pubmedhealth/PMHT0024677/:

arthritis

“Arthritis is a general term for conditions that affect the joints and surrounding tissues. Joints are places in the body where bones come together, such as the knees, wrists, fingers, toes, and hips. The two most common types of arthritis are osteoarthritis and rheumatoid arthritis.”

Hmmm, no mention of psoriatic arthritis. That’s all right. I’m sure the American College of Rheumatology can help us out here. There’s more information on their site at http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Diseases-Conditions/Psoriatic-Arthritis.

“Psoriatic arthritis is a type of inflammation that occurs in about 15 percent of patients who have a skin rash called psoriasis. This particular arthritis can affect any joint in the body, and symptoms vary from person to person. Research has shown that persistent inflammation from psoriatic arthritis can lead to joint damage. Fortunately, available treatments for are effective for most people. Psoriatic arthritis usually appears in people between the ages of 30 to 50, but can begin as early as childhood. Men and women are equally at risk. Children with psoriatic arthritis are also at risk to develop uveitis (inflammation of the middle layer of the eye). Approximately 15 percent of people with psoriasis develop psoriatic arthritis. At times, the arthritis can appear before the skin disorder.”

Ah, we know Chronic Kidney Disease is an inflammatory disease. Now we know that arthritis is, too. Being a purist over here, I wanted to check on psoriasis to see if falls into this category, too. Oh my! According to a Position Statement from the American Academy of Dermatologists and AAD Association at https://www.aad.org/Forms/Policies/Uploads/PS/PS-Maintenance%20Therapy%20for%20Psoriasis%20Patients.pdf:

“Psoriasis is a chronic inflammatory, multi-system disease associated with considerable morbidity and co-morbid conditions.”

SlowItDownCKD 2015 Book Cover (76x113)

Arthritis is an inflammatory disease; psoriasis is an inflammatory disease; and Chronic Kidney Disease is an inflammatory disease. The common factor here is obvious – inflammatory disease. So what, if anything, can my young Airman friend suggest to his father (other than the most important: See your doctor.)?

What is itCertainly not to take NSAIDS. I defined  – and cautioned against – NSAIDS in the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. There’s been no new research to debunk this warning since then.

“NSAID: Non-steroidal anti-inflammatory drugs such as ibuprofen, aspirin, Aleve or naproxen usually used for arthritis or pain management, can worsen kidney disease, sometimes irreversibly.”

Well, what can the man do for these three inflammatory diseases? Let’s take a look at Dr. Rich Snyder’s guest blog in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. In discussing probiotics and alkaline water, he threw in this little gem.

Alkaline/anti-inflammatory based diet: Some say, “Eat for your blood type.” But, what is the DASH diet for hypertension? It is not just a low salt  It is also full of anti-oxidants and anti-inflammatory.”

Food as medicine for an inflammatory body condition? DASH diet? Whoa! I just realized that this is the way I’ve come to eat myself in the last nine years.  What is the DASH diet? “DASH stands for Dietary Approaches to Stop Hypertension….”

Take a look at the Mayo Clinic’s information about this at http://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/in-depth/dash-diet/art-20048456. There’s far too much to explore here, but I do urge you to remember you have CKD, so although it is an inflammatory disease, you need to be mindful of your renal diet should you decide to adopt the DASH diet.food is medicine

Until next week,

Keep living your life!

Deep in the Heart of Texas

Last week I wrote that I’d tell you about our Texas trip this week and that’s just what I’ll do… sort of. We were in San Antonio for the Air Force Basic Training Graduation of a close family friend. I hadn’t wanted to go. The rest of the family was driving 14 hours straight. I thought they were insane.

It turned out I was right about that, but I am glad I went anyway.  The next day, our friend proposed to his girlfriend – who just happened to be our daughter – at The Riverwalk’s Secret Waterfall, Airmen escort and all. THAT was worth the ride. And we got to know his family better, understand them more, and value their company.  As they say in the ad, secret“Priceless.”

There was only one fly in the ointment. While the temperature was manageable for us since we live in Arizona, the humidity was not for the same reason. For my other than U.S. readers (and there are quite a few of them since I have 107,000 readers in 106 countries), Arizona’s usual humidity is low, very low. We do have a three minute rainy season in August (Okay, maybe it’s a teensy bit more than three minutes.) when it rises, but that’s not the norm.

Last week, the humidity in San Antonio, Texas, was between 68% and 72%. Even the air conditioning in the hotel bowed before it.  Our Airman had Air Force logoscheduled the entire weekend for us: The Airman’s run on an open field, late lunch at a restaurant with no available indoor seating, graduation on the parade field, an afternoon on The Riverwalk. There’s more, but you get the idea.  All of it outdoors, all of it in 68% to 72% humidity, all of it uncomfortable as can be.

And, it turns out, all of it not great for a Chronic Kidney Disease patient. Why? Well, that’s the topic of today’s blog. ResearchGate at https://www.researchgate.net/publication/263084331_Climate_change_and_Chronic_Kidney_Disease published a study from the Asian Journal of Pharmaceutical and Clinical Research from February of 2014 (That’s over two years ago, friends.) which included the following in the conclusion:

“Our data suggest that burden of renal diseases may increase as period of hot weather becomes more frequent. This is further aggravated if age advanced and people with chronic diseases like diabetes and hypertension.”DIGITAL_BOOK_THUMBNAIL

That makes sense, but how will this happen exactly? I included this June, 2010, article in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1. Apparently, heat (and humidity) has been an acknowledged threat to our kidneys for longer than we’d thought.

“.…Dr. HL Trivedi of the Institute of Kidney Diseases and Research Centre (IKDRC) said, ‘…. Rapid water loss causes the kidney’s functioning to slow down, resulting in temporary or permanent kidney failure.’

Extreme heat causes rapid water loss, resulting in acute electrolyte imbalance. The kidney, unable to cope with the water loss, fails to flush out the requisite amount of Creatinine and other toxins from the body. Coupled with a lack of consistent water intake, this brings about permanent or temporary kidney failure, explain experts.”

The article can be viewed directly at http://www.dnaindia.com/health/report_heat-induced-kidney-ailments-see-40pct-rise_1390589 and is from “Daily News & Analysis.”

By the time this book’s twin, The Book of Blogs: Moderate Chronic Kidney Disease, Part 2, was ready for publication, the (then) NKF-logo_Hori_OBspokesman for The National Kidney Foundation – Dr. Leslie Spry – had this to say about heat and humidity:

“Heat illness occurs when body temperature exceeds a person’s ability to dissipate that heat and is commonly diagnosed when the body temperature approaches 104 degrees Fahrenheit and when humidity is greater than 70 percent. Once the humidity is that high, sweating becomes Digital Cover Part 2 redone - Copyless effective at dispersing body heat, and the core body temperature begins to rise.”

The entire article is at http://www.huffingtonpost.com/leslie-spry-md-facp/heat-illness_b_1727995.html

Oh, so humidity affects sweating and body heat rises.  Humidity greater than 70%. That covers almost the entire time we were in Texas. Well, what’s the connection between heat illness and CKD then?

The CDC offers the following advice to avoid heat illness:

“People with a chronic medical condition are less likely to sense and respond to changes in temperature. Also, they may be taking medications that can worsen the impact of extreme heat. People in this category need the following information.

  • Drink more water than usual and don’t wait until you’re thirsty to drink.
  • Check on a friend or neighbor, and have someone do the same for you.
  • Check the local news for health and safety updates regularly.
  • Don’t use the stove or oven to cook——it will make you and your house hotter.
  • Wear loose, lightweight, light-colored clothing.
  • Take cool showers or baths to cool down.
  • Seek medical care immediately if you or someone you know experiences symptoms of heat-related illness(http://www.cdc.gov/extremeheat/warning.html).”

bottled waterUh-oh, we’re already in trouble. Look at the first suggestion: our fluid intake is restricted to 64 oz. (Mine is, check with your nephrologist for yours.) I know I carefully space out my fluids – which include anything that can melt to a liquid – to cover my entire day. I can’t drink more water than usual and, sometimes – on those rare occasions when I’ve been careless – have to wait until I’m thirsty to drink.

Diabetes is the foremost cause of CKD. I was curious how heat affected blood sugar so I popped over to Information about Diabetes at http://www.informationaboutdiabetes.com/lifestyle/lifestyle/how-heat-and-humidity-may-affect-blood-sugar and found this:

  1. If our body is low on fluids, the kidneys receive less blood flow and work less effectively. This might cause blood glucose concentrations to rise.
  2. If someone’s blood sugar is already running high in the heat, not only will they lose water through sweat but they might urinate more frequently too, depleting their body’s fluids even more.

There’s more at the website if this interests you.

So, pretty much, the way to deal with heat and humidity having an effect on your (and my) CKD is to avoid it. That doesn’t mean you have to move, you know.  Stay in air conditioning as long as you can so your body is not overheated and can better handle this kind of weather. Wearing a hat and cool clothes will also help. I certainly learned the value of wearing cotton this past week. It’s a fabric that breathes.

What is itUntil next week,SlowItDownCKD 2015 Book Cover (76x113)

Keep living your life!

Rain, Rain, Go Away…

We had a day of rain.  I know that’s not a terribly unusual statement, but this is Arizona. July and August are our rainy months; it’s only April. rainWell, we do know the climate is changing. .. and we do know it’s affecting our health. That includes the rain. How? Most often – aside from sun showers – if it’s raining, the sun isn’t shining.

So? What’s the big deal, I can almost hear you ask. You’re not out there getting your 10 to 15 sunscreenless-before-the-day-heats-up minutes of the best source of vitamin D if it’s raining, my friends. Of course, there are supplements and loads of us, like me, take them. But the gold standard? Natural sunlight.

hammock chairBear even got me a hammock chair so I could sit in the sun really, really comfortably for my 10 to 15 minutes. So comfortably, that I found him in my chair once too often when I wanted to be in it and bought him one of his own. Now we can get at least 10 to 15 minutes together each day.

According to the National Kidney Foundation at https://www.kidney.org/news/newsroom/nr/Low-Vitamin-D-Levels-Linked-to-Early-Signs-of-KD:

“Researchers found that those who were deficient in vitamin D were more than twice as likely to develop albuminuria (a type of protein in the urine) over a period of five years. Albuminuria is an early indication of kidney damage as healthy kidneys capture protein for use in the body.

‘There have been a number of studies establishing a relationship between vitamin D levels and kidney disease,’ said Thomas Manley, Director of Scientific Activities for the National Kidney Foundation. ‘This study supports that relationship and shows that a low vitamin D level increases the likelihood of developing protein in the urine, even among a general population.’”

That’s not all, folks.  I jumped back to my very first Chronic Kidney Disease book, What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for more information about vitamin D and our kidneys:What is it

“The kidneys produce calcitrol which is the active form of vitamin D. The kidneys are the organs that transfer this vitamin from your food and skin [sunshine provides it to your skin] into something your body can use. Both vitamin D and calcium are needed for strong bones. It is yet another job of your kidneys to keep your bones strong and healthy. Should you have a deficit of Vitamin D, you’ll need to be treated for this, in addition for any abnormal level of calcium or phosphates.  The three work together. Vitamin D enables the calcium from the food you eat to be absorbed in the body. CKD may leech the calcium from your bones and body. Phosphate levels can rise since this is stored in the blood and the bones as is calcium.  With CKD, it’s hard to keep the phosphate levels normal, so you may develop itchiness since the concentration of urea builds up and begins to crystallize through the skin. This is called pruritus.”sun-graphic1

All for the lack of a little sunshine! Yes, I am being dramatic and, yes, you can take supplements, but that’s like drinking juice instead of eating the whole fruit and expecting the same benefits.

IMG_1398In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I wrote the following:

“I have many more articles in front of me, so I’m going to simply list the areas in which low vitamin D is involved.

  • cardiovascular
  • Chronic Kidney Disease {The purpose of this blog, lest we forget}
  • health hip fracture risk
  • hepatitis B {Have you decided to take the inoculation against this?}
  • hypertension
  • stroke

Got how dangerous low levels of vitamin D can be?  Good.”

Uh-huh, vitamin D is a big deal… especially for us since we have CKD.  According to The National Institutes of Health at https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/,vitamin d pills

“A growing body of research suggests that vitamin D might play some role in the prevention and treatment of type 1 … and type 2 diabetes …, hypertension …, glucose intolerance…, multiple sclerosis …, and other medical conditions….”

Oh, there’s also a good possibility that vitamin D deficiency is a factor in obesity. As one who is constantly attempting to lose weight, I have one thing to say about that, “Go.sit.in.the.sun.”

I’ve been getting questions about transplantation, as in how to, what it entails, and who to contact. I don’t have the answers, but the Erma Bombeck Project does. This is from an email I received from The National Kidney Foundation of Arizona:

ErmaToday, over 100,000 Americans are waiting for a life-saving kidney transplant. The Erma Bombeck Project provides facts and reliable resources to help individuals save a life – whether by registering to be a non-living organ donor, or considering the gift of life through living donation. The project aims to narrow the gap between the number of individuals desperately waiting for a kidney and the number of kidneys available.

We invite you to visit the new, improved site www.ErmaBombeckProject.orgwhere you can find features like:

Facts on kidney donation
A free, downloadable Living Donor Guide
Living Donor Educational Videos
Links to additional resources

I urge you to take a look at the site should this interest you … and I really hope it interests you.

I finally got my print copy of SlowItDownCKD 2015 and am so pleased with the way it turned out that I am seriously considering redoing the SlowItDownCKD 2015 Book Cover (76x113)formats for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2.  Those orphan (standing all alone) blog titles at the bottom of the page always bothered me. Of course, there won’t be any difference if you purchased the digital copy of the books.

In a few days, I’ll be on my way to San Antonio – specifically Lackland Air Force Base – where my step daughter’s sweetheart will graduate from basic training. I’m eager to try out my on-the-road exercise and food ideas during the 14 plus hour drive. Bear is going too, of course, so I’ll have my staunchest supporter with me. And Lara is very respectful of my needs and has even offered to water walk with me since the hotel has a pool. This should be fun! Anyone have any sightseeing recommendations?

Until next week,

Keep living your life!

Why Not Here?

Having had no particular medical issue of my own this week – finally! – and none for anyone else in the family, I was casting about for something I’d like to write about when I found this in my files. It’s from SBS, which is self-described as, “…multilingual and multicultural radio and television services that inform, educate and entertain all Australians and, in doing so, reflect Australia’s multicultural society.” You can find this particular article at http://www.sbs.com.au/news/article/2014/05/28/doctors-hope-new-test-will-arrest-kidney-disease-deaths.

Australia“’The State of the Nation: Chronic Kidney Disease in Australia’ report by Kidney Health Australia shows while one in 10 adults have kidney disease, only one in 100 know they have it. But Kidney Health Australia medical director Tim Mathews said that could be about to change thanks to a new take-home test distributed by pharmacists.

‘Pharmacists have an opportunity to identify people at high risk of kidney trouble – those who present with a prescription for diabetes and for high blood pressure are the two groups we’re focusing on,’ Dr Mathews said. ‘So that’s an opportunity for them to have a dialogue with the patient and see if they’ve had their kidneys checked, and if not, offer them a urine test which the patient then buys and takes home to test in their own privacy. At the moment we know in General Practice, only 40 per cent of diabetics are having a urine test each year – we would hope to push that number up by this program. ‘”Urine_sample

Of course, I know that we’re not in Australia and that this is from almost two years ago, but think of it! Here we are desperate to spread Chronic Kidney Awareness so that people will know to be checked for the disease while the Australians are already doing something about people getting tested.

Why can’t we do that? Or are we already doing that? If we aren’t, why not? It just seemed such a simple aid to informing people they need to be tested.

What is it

 

SlowItDownCKD 2015 Book Cover (76x113)

 

IMG_1398

 

 

I’ve written four books about CKD and I know I haven’t covered this possibility in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2, or SlowItDownCKD 2015. Why not? Because the idea is just so simple, so obvious, that I never thought of it. Let’s see if anyone else in the U.S. has.

Hmmm, I did find this from EurekAlert at http://www.eurekalert.org/pub_releases/2016-01/cpa-pkt012616.php :

“Pharmacists who screened at-risk patients for chronic kidney disease (CKD) found previously unrecognized disease in 1 of every 6.4 patients tested, according to a study to be published in the January/February 2016 issue of the Canadian Pharmacists Journal.”

Sorry, wrong country – although we’re at least on the right continent now. I think I just found one… nope, that’s in England. Wait, there’s AJKDsomething in the American Journal of Kidney Disease… oh, it’s an editorial proposing pharmacists keep on the lookout for those at risk for CKD. Will you look at that! This was proposed in 2004, a dozen years ago. Canada, UK, Canada. No, nothing for the USA.

I know my pharmacist is very, very careful to check that the drugs I’m prescribed are those that will not harm my kidneys. You’ve probably already read several of my blogs about that. In the last one, I wrote about how a doctor covering for my primary care physician would not listen when I told him I had CKD and that my pharmacist told me point blank not to buy the drug he prescribed, then called him to make certain he understood why this drug was not one for CKD patients. He didn’t listen to me; she did… and then made him listen to her.

On a personal note, we had an extremely quiet third anniversary since I had the flu and Bear had a new diagnose of his own to deal with. I’m gladIMG_2394 we’d gotten to the symphony beforehand and we’ll just have re-arrange the dinner out with some of the kids. We’ve got that little vacation in Texas to look forward to next week. I’m sure we can find a way to celebrate there. Thank you for your warm wishes. I was surprised at how many people remembered.

I’m lucky. I have never felt alone, not even with the CKD diagnose. But some of my readers have let me know how very alone they feel with their illness even though family and friends are supportive. That’s why I want to let you know about The National Kidney Foundation’s Peers. The following is from their website at https://www.kidney.org/patients/peers.

“Do you need help adjusting to life with kidney disease? Or want to learn more about treatment options? NKF Peers is a FREE, telephone-based peer support  program from the National Kidney Foundation.   The program matches those in need of support with a peer mentor who has  been through a similar situation. You’ll connect with your mentor through a free, private phone system so you won’t have to disclose your personal phone number….

About NKF Peers

  • A national, telephone-based peer support program from the National Kidney Foundation
  • Connects people who want support with someone who has been there
  • Helps people adjust to living with chronic kidney disease, kidney failure, or a kidney transplant.

Also offers support to those considering living kidney donation or who have been have been living kidney donors.

NKF-logo_Hori_OB

 

 

How do participants interact with each other?

  • Participants are connected through a toll-free, automated telephone system. No one discloses personal phone numbers or incurs long-distance charges.
  • The automated telephone system allows participants to leave voicemail messages for their partners and block calls at certain hours.
  • Telephone services are provided free-of-charge by the NKF.

To learn more: Call 855-653-7337 (855-NKF-PEER) or email nkfpeers@kidney.org”

Of course, you can always drop a question or a comment on SlowItDownCKD’s Facebook page and I’ll research whatever you’re asking about… with the provision that you understand I am not a doctor and that you need to speak with your nephrologist before taking any action on my advice.kidney.jpg If it’s private, you can email me at SlowItDownCKD@gmail.com …with the same provision. By the way, I’m available 24 hours a day, seven days a week.

Do take a look at the new book. I’m really proud of this baby.

Until next week,

Keep living your life!

All Is Not Lost

Last week, I told you the good news about SlowItDownCKD 2015 being available in print and digital on Amazon.com. And last week, I told the bad news about yet another member of my family being stricken with Parkinson’s disease.SlowItDownCKD 2015 Book Cover (76x113)

I didn’t know much about the medication to ameliorate the symptoms of the disease, so that’s what I’m exploring this week. But… we need to go back a little bit to see what this myriad of symptoms consists of. Let’s start with a simple definition of Parkinson’s disease. We’ll call it PD, but remember that doesn’t mean peritoneal dialysis in this particular blog.

According to Consumer Health Digest at https://www.consumerhealthdigest.com/health-conditions/parkinsons-disease.html,

“Parkinson’s disease is a disorder of the nervous system that progresses with time. It primarily affects the movement of a person. It develops steadily typically beginning with a slight tremor in one hand. Aside from causing tremor that is the most well-known sign of the disease, it also usually causes stiffness or the slowing of movement. During the early stages, the face may show very little, or no expression at all and the arms may not swing when the affected individual walks. Speech can also become softer or slurred.”no expression

I do see most of these symptoms in the newly diagnosed member of my family.  (Anecdote to lighten this heavy blog: one of my brothers has the ‘no expression’ symptom. A young fellow snidely called him stone face. I quietly told him my brother has Parkinson’s and can’t smile. My brother laughed. I laughed. Finally, the young fellow laughed, too.) What else?

The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/parkinsons-disease/basics/symptoms/CON-20028488 answered my question:

“Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may notice a back-and-forth rubbing of your thumb and forefinger, known as a pill-rolling tremor. One characteristic of Parkinson’s disease is a tremor of your hand when it is relaxed (at rest).

Slowed movement (bradykinesia). Over time, Parkinson’s disease may reduce your ability to move and slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk, or you may find it difficult to get out of a chair. Also, you may drag your feet as you try to walk, making it difficult to move.

Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can limit your range of motion and cause you pain.

Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson’s disease.

Loss of automatic movements. In Parkinson’s disease, you may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.

Speech changes. You may have speech problems as a result of Parkinson’s disease. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.

micrographiaWriting changes. It may become hard to write, and your writing may appear small.”

Oh, I’d seen all of these in him. Maybe he should have taken his neurologist’s suggestion that he begin medication, but it hadn’t been explained very well. Actually, it hadn’t been explained at all. So what was it?

Oh, my, there are so many different medications listed depending upon your unique set of symptoms. The most common is a combination of L-dopa and carbidopa according to WebMD at http://www.webmd.com/parkinsons-disease/guide/drug-treatments.

“Levodopa (also called L-dopa) is the most commonly prescribed and most effective drug for controlling the symptoms of Parkinson’s disease, particularly bradykinesia  and rigidity.

Levodopa is transported to the nerve cells in the brain that produce dopamine. It is then converted into dopamine for the nerve cells to use as a neurotransmitter.

…carbidopa increases its effectiveness and prevents or lessens many of the side effects of levodopa, such as nauseavomiting, and occasional heart rhythm disturbances.”

Hey, wait a minute! Drugs.com at http://www.drugs.com/cdi/carbidopa-and-levodopa-suspension.html is emphatic that you tell your doctor if you have diabetes or kidney disease BEFORE this is prescribed for you. Ummmmm, we have CKD; that’s kidney disease… and many of us have diabetes which caused the CKD. There’s the same warning about kidney disease on the same site for carbidopa.

Last week, I discovered that if you have ESRD, you’ll more likely to develop Parkinson’s. This brings up more and more questions for me. My newly diagnosed with Parkinson’s family member doesn’t have CKD, but I do… and you do. What if we reach end stage? What if we develop Parkinson’s? You know what? That’s what the specialists are for.parkinsons-disease-info

Thank you to MichaelJFox.org for sharing the infogram above.

Looking at the medical treatments of a disease that’s fairly new to me, what I’ve realized is that your drug treatment has to be specifically tailored for you. You may have symptoms my loved one doesn’t; he may have symptoms you don’t. You may well tolerate a drug; he may need secondary drugs to counteract the side effects of the same drug. He may well tolerate a drug you just can’t without several secondary drugs to counteract the side effects.

When one of my brothers told me this is a complicated disease, I don’t think I realized just how complicated. I’m not a doctor as I keep repeating. I know when we need one, a specialist at that, and now is the time.

Does that mean lose hope? Of course not, drugs are only one type of treatment for Parkinson’s. There’s a whole new field of physical therapy especially for movement disorders. Most of these will cover:

Strengtheningpd ex

Flexibility

Balance

Gait Training

Transfer Training

I’ve been watching my loved one struggle to lift himself off the couch, navigate turns while walking, and keep his balance. It could be heart breaking if we didn’t know help is available. The program he’ll be attending is intensive, four weeks of four days a week. The retired teacher over here told him to think of it as school. Honestly, I don’t care how he thinks of it as long as he does it.

What is it

Well, it’s time to try out some of his until therapy starts exercises with him.IMG_1398

Until next week,

Keep living your life!

It’s National Kidney Month

March is National Kidney Month.  In the last few years, I’ve offered a new Chronic Kidney Disease book for sale during this month, but free on IMG_1398World Kidney Day. This year that’s March 10th.  The third Book of Blogs: Moderate Stage Chronic Kidney Disease, this year’s offering, has been retitled SlowItDownCKD – 2015. If my CKD writing has a ‘brand name,’ that’s it. Same writer, same type of blogs; just a new title for the series.  Check both Amazon.com on March 10th for your free digital copy.

There’s a reason there’s such attention being paid to our kidneys.  Last year’s National Kidney Month ‘Dear Abby column’ explains.

“DEAR ABBY: Hypertension runs in my family, but as a pretty healthy 49-year-old, I didn’t think much about it. I never realized that my pounding headaches were a direct result of high blood pressure. To make matters worse, the same high blood pressure that was causing my head to throb was also destroying my kidneys.

I wish I had known about my high blood pressure sooner and taken it seriously. When I finally learned about my kidney damage, it was too late to save them.nephrons

More than 73 million people are at risk for developing kidney disease, and I sincerely want to help them avoid this fate. My battle with kidney disease has turned me into an advocate for patients and those who are at risk. In honor of National Kidney Month in March and World Kidney Day on March 12, (Me: That was the date last year.) Will you please help me spread the word? — Lance Taylor in Minnesota

DEAR LANCE: I’m pleased to help you in this worthwhile effort. According to the National Kidney Foundation, 1 in 3 American adults is at risk for kidney disease. Major risk factors for kidney disease include diabetes, high blood pressure, a family history of kidney failure and being age 60 or older. Additional risk factors include kidney stones, smoking, obesity and cardiovascular disease.

Kidney disease often goes undetected because it lacks physical symptoms until the very late stages. By then the organs have already failed. But early detection, healthy lifestyle changes and proper treatment can slow the progress of kidney disease. Those at risk should have simple blood and urine tests to check if their kidneys are working properly.

Readers, if you are at risk, during your next physical examination, ask your health care practitioner to check your kidneys. To learn more about prevention, visit kidney.org. You will also find information about free KEEP Healthy kidney screenings in your area.”

NKF-logo_Hori_OBI’ve written about the more than 50 local offices nationwide that help the NKF provide early-detection screenings and provide other vital patient and community services. I went to the website, clicked on ‘Keep Healthy Event in your area,” and up popped the locations of this particular event.

Several years ago, my daughter Nima asked if could guest blog during National Kidney Month from the perspective of someone who loves a person with CKD. These are some of the highlights of that blog.

“I have to admit when my mother first told me she had CKD I freaked out ever so slightly. My knowledge of CKD was minimal, if that, and it took more than a few times of Ma telling me that CKD was in fact manageable and not a death sentence to calm down…..

One thing I had to get used to was reminding myself to mention at doctor visits that a parent has CKD, and to please take blood work to keep an eye on my own GFR levels. Every now and then I’d also get a helpful reminder from Ma right before a doctor visit.

I … have another resource that not everyone else has: I have a mother who is also writing a very detailed book (Working on the 4th one now.) about her experiences with discovering she had CKD. Getting a chance to read the manuscript of her upcoming book was probably where I got the meat and potatoes of my CKD education. (Nima is the professional Reader for all the CKD books I write.)nima kidney

For those out there that have a loved one that was recently diagnosed with CKD ….don’t be afraid to ask questions about what you can do to help and what you should know about how CKD affects your family member or loved one. I was always worried about tiring my mother out until she finally explained to me that as long as she gets a chance to lay down/nap before we go out, she’s usually fine.”

But it’s not just getting tired; the following appeared on Yahoo’s PRWEB on Monday, March 14, 2011. I took the online test mentioned in the article (which is still there and highly recommended) and, sure enough, I need to see an audiologist. Consider taking the online test yourself after you read this little known information about CKD patients.

“People with Chronic Kidney Disease Should Have Their Hearing Checked:

March is National Kidney Month

 People with Chronic Kidney Disease (CKD) should take the Across America Hearing Check Challenge—a free, quick, and confidential online hearinghearing test at http://www.hearingcheck.org. The non-profit Better Hearing Institute (BHI) is offering the test as part of its effort to raise awareness of the link between Chronic Kidney Disease and hearing loss. March is National Kidney Month. BHI’s online test will help people determine if they need a comprehensive hearing check by a hearing professional.”

Every part of you is affected by your Chronic Kidney Disease. That means that everyone in your life is affected by it, too. Bear knows I’ve got to exercise each day no matter what we have planned. My friends and family know that inviting us for dinner means I may not be able to eat what they’ve cooked, even if it’s ‘healthy.’ Think about that a bit and you’ll realize CKD is serious.What is it

Until next week,

Keep living your life.

Damned If You Do and Damned If You Don’t.

It is absolutely amazing how many things can go wrong with the human body.  Some, such as cancer, are drastic while others, like a general feeling of being unwell or fatigue (sound familiar, Chronic Kidney Disease sufferers?), are not. For example, Bear has developed the Helicobacter pylori infection. This, according to MedlinePlus (part of the U.S. National Library of Medicine) at https://www.nlm.nih.gov/medlineplus/helicobacterpyloriinfections.html  is

H. Pylori a type of bacteria that causes infection in the stomach. It is found in about two-thirds of the world’s population. It may be spread by unclean food and water, but researchers aren’t sure. It causes Peptic ulcers and can also cause stomach cancer.”

That made me nervous.  I immediately (and unfairly) blamed the food we’d eaten during our almost recent cruise to the Caribbean – specifically, during our ports of call in Haiti and Jamaica – and debated phoning my brothers and sisters-in-law right away… oh, and getting myself checked. After all, it was either a simple blood or breath test. Our primary care doctor preferred the blood test.

That decision was sort of a mistake. Our usual – and very good – phlebotomist was out that day having taken a sleep test (Good for her!) in a faraway part of the valley the night before and couldn’t make it in, so a daily temp did the drawer. Oh! That was almost a week ago and I still have a three inch black and blue mark on the puncture site.  I want my regular phlebotomist.

I know, I know, get back on topic.  I didn’t make those calls because my test came back negative… so it wasn’t the food at the ports of call.  Well, then what caused Bear’s infection? WebMD at http://www.webmd.com/digestive-disorders/h-pylori-helicobacter-pylori tells us,

“Many people get H. pylori during childhood, but adults can get it, too. The germs live in the body for years before symptoms start, but most people who have it will never get ulcers.”

That made sense. As a child, Bear spent his summers on his grandfather’s farm and participated in whatever chores a child his age could perform. This is not to say the food or water on the farm were unclean, but

“…H. pylori bacteria may be passed from person to person through direct contact with saliva, vomit or fecal matter…. Or “Living with someone who has an H. pylori infection.”

Thank you for that information Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/h-pylori/basics/risk-factors/con-20030903.

Considering the existence of this type of infection wasn’t discovered until 1982 and Bear was a child way before then, he may have contacted it in the manner described above.

Of course now you’re wondering what the heck we were going to do about it, no matter how my poor hubby developed it since it could have drasticantibiotics consequences if we didn’t. (Long sentence there.) MedicineNet.com at http://www.medicinenet.com/helicobacter_pylori/page8.htm explains:

H. pylori is difficult to eradicate from the stomach because it is capable of developing resistance to commonly used antibiotics. Therefore, two or more antibiotics usually are given together with a PPI and/or bismuth containing compounds to eradicate the bacterium. (Bismuth and PPIs have anti-H. pylori effects.)”

Is it effective? We don’t know yet, since Bear is in the middle of the regiment.  However, I’ve read that sometimes the infection can re-occur even if this treatment is successful and that the blood test is not a good choice to re-test after the medication has been finished. One step at a time, folks, one step at a time.

While I’m concerned about Bear, I also wanted to know how this might affect someone with Chronic Kidney Disease who developed it. It seems that it doesn’t until you reach End Stage Chronic Kidney Disease. Since I don’t know much about dialysis or any of the other end stage blood cleansing methods I can only give you information about the little I understood.

pepticOne is this conclusion from a PubMed.gov study at http://www.ncbi.nlm.nih.gov/pubmed/24907021.

“The H. pylori infection rate is lower in PUD patients with CKD and ESRD than in those without CKD.”

Ugh! Alphabet soup PUD is Peptic Ulcer Disease; CKD is Chronic Kidney Disease; and ESRD is End Stage Renal Disease.

But then I found a more negative study on Medscape at http://www.medscape.com/viewarticle/843877.

“This is currently the largest nation-based study in which the risk of ESRD in H. pylori-infected patients was examined. H. pylori infection was associated with a subsequent risk of ESRD. H. pylori-infected patients with concomitant chronic kidney disease (CKD) or cardiovascular disease (CVD) risk factors were at higher risk of ESRD than were those who had a single CKD or CVD risk factor.”

I also found it interesting that the stomach medication Omeprazole, which has just been linked to CKD, is prescribed along with antibiotics to treat H. Pylori. Now there’s a Catch 22. You can take it as prescribed for your infection, the medication may damage your kidneys, or you can not take it and have the infection damage your kidneys anyway.

Ouch!  Enough of this gloom and doom.  Tomorrow is my birthday and that means gifts for you.  I am giving away one copy of each of my kidney disease books: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 1; and The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 2.IMG_1398

What is it

 

What do you have to do to receive your gift? Simply be one of the first three people to like my Facebook page: SlowItDownCKD and leave a comment about Chronic Kidney Disease. The first person to do so will receive a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the second will receive a copy of The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 1, and the third of the three will receive a copy of The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 2. Don’t forget to leave the comment. Enjoy my birthday, everyone.

Until next week,

Keep living your life!

Another Cause of CKD?

180116_10150140748275850_2010917_nI’ve mentioned before that I’d been an actor for decades before I retired from this maybe four years ago.  As happens when you’re lucky, I’ve remained friendly with some of the wonderful people I met through the plays and/or movies I’ve been in.  One such friend – James David Porter, a talented scriptwriter, director, actor, founder of Arizona Curriculum Theater, and an extremely intelligent person – is cognizant of both my Chronic Kidney Disease and my awareness advocacy for the disease.act

You probably already know about the warnings re heartburn and kidney disease … so is he. As soon as the news hit general sites, he posted it to my personal Facebook page.  I’d already picked up the information about this from the medical sites I belong to, but he didn’t know that. I love it when my friends look out for me.

And I, in turn, want to look out for you. That’s why I’ll be writing about the problem today. Let’s go way back to the beginning for this one.

I had had something: heartburn, upset stomach, acid reflux??? a few months ago. Not having experienced digestive problems before I didn’t know what it was. Heck, I didn’t even know if it was a digestive problem, but I knew I couldn’t take the nausea and sensitive stomach too much longer without investigating.  After weeks of this not going away on its own, I made an appointment with my trusted primary care doctor.

While I was waiting for the appointment, I took a look at Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. although I bookcan only understand some of it and we know how dangerous a little knowledge can be. According to what I read, it didn’t seem that I had an ulcer. Hmmm, maybe gastritis?

Something seemed off with what I was reading, sort of out of sync, so I checked copyright date. Uh huh, the book is 14 years old… and outdated. Time for a newer edition.  Case in point and message sent: check the copyright dates of any medical texts you have.  They get outdated fast these days.

Okay, let’s see what the doctor had to say. She addressed my ‘abdominal pain in the pit of my stomach’ and the nausea, diagnosing it as ‘epigastric pain’ and nausea. Well, how is that different from stomach pain?

The stomach is defined by WebMD at http://www.webmd.com/digestive-disorders/picture-of-the-stomach in this way:

“The stomach is a muscular organ located on the left side of the upper abdomen. The stomach receives food from the esophagus. As food reaches the end of the esophagus, it enters the stomach through a muscular valve called the lower esophageal sphincter.

The stomach secretes acid and enzymes that digest food. Ridges of muscle tissue called rugae line the stomach. The stomach muscles contract periodically, churning food to enhance digestion. The pyloric sphincter is a muscular valve that opens to allow food to pass from the stomach to the small intestine.”

stomach_72I always get the stomach and the abdomen mixed up, so I looked that up too. Healthline at http://www.healthline.com/human-body-maps/abdomen#seoBlock was helpful here.

“The abdomen is the area below the chest and above the pelvis. It is comprised of muscles, vertebrae, ribs, blood vessels, nerves, and several vital organs, including the liver, small intestine, large intestine, and kidneys.”

Oh, so the stomach is part of the abdomen.

We still need one more definition here: Epigastric. According to The Free Dictionary at http://www.thefreedictionary.com/epigastric, that means, “The upper middle region of the abdomen.” Ah, another part of the abdomen.

The good doctor prescribed 40 mg. of Omeprazole each morning before breakfast. Omeprazole’s generic name is Prilosec. I saw nothing in the pharmacy handout for this medication that related specifically to CKD.

However, the risk doesn’t seem to be to me since I already have CKD but to those who use these drugs who do not yet have CKD. I do wonder if it could cause Acute Kidney Injury or acute interstitial nephritis (both short term as opposed to chronic) in those who both already suffer from CKD and use these drugs since it’s not made clear in the articles.

There are many versions of this announcement but I’ll be using the one from HealthDay at http://consumer.healthday.com/gastrointestinal-information-15/heartburn-gerd-and-indigestion-news-369/ppis-and-kidney-disease-706877.html since it is the least medicalese one I’ve located.

gastro“MONDAY, Jan. 11, 2016 (HealthDay News) — A type of heartburn medication called proton pump inhibitors may be linked to long-term kidney damage, a new study suggests.

Prilosec, Nexium and Prevacid belong to this class of drugs, which treat heartburn and acid reflux by lowering the amount of acid produced by the stomach.

People who use proton pump inhibitors (PPIs) have a 20 percent to 50 percent higher risk of chronic kidney disease compared with nonusers, said lead author Dr. Morgan Grams, an assistant professor of epidemiology at Johns Hopkins University in Baltimore.

The study was published Jan. 11 in JAMA Internal Medicine.

The study doesn’t establish a direct cause-and-effect relationship between the drugs and chronic kidney disease. However, Grams said, ‘We found there was an increasing risk associated with an increasing dose. That suggests that perhaps this observed effect is real.’”

This information is brand, spanking new. I would suggest speaking to your doctor if you are taking one of these medications. I would not suggest doing anything – such as stopping without medical advice – in a panic.  I’m a nut about my health and even I spoke this over with my PCP, who I might mention, is a highly collaborative doctor, one who listens to what I have to say and talks it over with me. Now that’s the way to have a doctor.

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Book news!  The twins will have a little brother this year. Translation: There will be another Book of Blogs, although I think it’s time for a less unwieldy title. Maybe something like SlowItDownCKD: 2015. Also, my birthday is February 2, so Facebook’s P2P’s Chronic Illness Buy & Sell and I are cooking up a little online birthday party. You’re all invited.What is it

Until next week,

Keep living your life!

Now What? Oh, the Pressure.

I had fully expected to be publishing a guest blog by a personal chef today.  All she needed was a copy of the renal diet I followed.  Well, that was Thanksgivingwhat we had talked about. But, as happens sometimes, that was simply not meant to be. Hmmmm, could this be the universe offering me another indication that I was correct in thinking I needed to stay away from writing about recipes on the blog?

So there I was casting around for a topic that I wanted to know more about and you’d enjoy reading about. Of course, I’d already completed my daily perusal Twitter for any articles about anything related to Chronic Kidney Disease.

Bingo!  This is what I found on Twitter about something I’d never really understood:  ‘Blood Pressure, the Top and Bottom Numbers ‘(and I’ll add here:  the risk of disease). The URL for this is http://well.blogs.nytimes.com/2015/12/09/ask-well-blood-pressure-the-top-and-bottom-numbers/?partner=rss&emc=rss&smid=tw-nythealth&smtyp=cur

“Both elevated systolic blood pressure (the top number) and diastolic (the bottom number), together or alone, increase the risk for cardiovascular disease. The systolic reading indicates the pressure in the arteries produced when the heart beats; the diastolic is the arterial pressure between beats, when the heart is at rest. Readings below 120/80 are considered healthy.

Though high systolic and diastolic readings are both associated with increased risk, they may present different risks for different diseases. In 2014, researchers published a study of more than 1.25 million people 30 and older who were initially free of cardiovascular disease. They recorded their blood pressures, and followed them for an average of 5.2 years, during which 83,098 developed cardiovascular disease.

blood pressure 300dpi jpgOver all, those with a reading above 140/90 had a higher risk for cardiovascular disease than those with lower blood pressure — an unsurprising finding.

But the researchers also found that the risk of some diseases could be predicted by a high systolic reading, and others by a high diastolic reading. For example, the risk for heart attack is more strongly associated with an elevated systolic pressure. But the risk for abdominal aortic aneurysm, a swelling or rupture in the large artery that goes from the heart to the chest and abdomen, is higher when the diastolic pressure is elevated.

‘It’s reasonable to say that the systolic effect over all is slightly stronger than the diastolic,’ said the senior author of the study, Dr. Harry Hemingway, a professor of clinical epidemiology at University College London and director of the Farr Institute.

‘But if you have isolated diastolic hypertension,’ he added, ‘you still have hypertension, and you should take measures to lower it.’”

This makes sense, but it certainly got me to wondering. I wanted to know which of these numbers was more important to your health. Here’s what The American Heart Association at http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/AboutHighBloodPressure/Low-Blood-Pressure_UCM_301785_Article.jsp had to say about that.

“Typically more attention is given to the top number (the systolic blood pressure) as a major risk factor for cardiovascular disease for people over bp cuff50 years old. In most people, systolic blood pressure rises steadily with age due to increasing stiffness of large arteries, long-term build-up of plaque, and increased incidence of cardiac and vascular disease.”

Wait a minute. Is this contradictory? I get it that you need to pay extra attention to the systolic number if you’re over 50, but this statement seems to be saying that your blood pressure is going to rise anyway because you’re over 50.

I found this age appropriate blood pressure reading chart at Disabled World (http://www.disabled-world.com/artman/publish/bloodpressurechart.shtml)

Age

Systolic BP Diastolic BP
3-6 116 76
7-10 122 78
11-13 126 82
14-16 136 86
17-19 120 85
20-24 120 79
25-29 121 80
30-34 122 81
35-39 123 82
40-44 125 83
45-49 127 84
50-54 129 85
55-59 131 86
60+ 134 87

Ah, so your numbers will rise as you age, but not to any danger level.  Hmmmm, I’m usually in the 60+ range and hadn’t realized that was normal. Good thing I hadn’t spent any time worrying about those readings.

Well, what about the new(ish) guidelines for a healthy blood pressure?  How does that fit in here?

“Adults aged 60 or older should only take blood pressure medication if their blood pressure exceeds 150/90, which sets a higher bar for treatment than the current guideline of 140/90, according to the report, published online Dec. 18 (2013) in the Journal of the American Medical Association.

stages of CKDThe expert panel that crafted the guidelines also recommends that diabetes and kidney patients younger than 60 be treated at the same point as everyone else that age, when their blood pressure exceeds 140/90. Until now, people with those chronic conditions have been prescribed medication when their blood pressure reading topped 130/80.”

The above is from WebMD at http://www.webmd.com/hypertension-high-blood-pressure/news/20131218/new-blood-pressure-guidelines-raise-the-bar-for-taking-medications.

One note of warning here: I tested at the usual levels for someone my age when I was in my 50s, so I stopped the Hbp medication.  Yes, there was a six month honeymoon period of in sync readings. But then, they went up and up.  It was the medication that was keeping me in the normal range.

I was delighted to give you and me the Chanukah present of an index for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. This new edition is now on sale at Amazon.com and should be on B&N.com in between five to seven weeks.  If you’ve already bought a copy of the book and would like an index, email me at SlowItDownCKD@gmail.com and I’ll be glad to send it to you.

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Now for an early Christmas/Kwanzaa present for all of us… The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 is now indexed and the new edition should be on sale at Amazon by the end of next week. B&N.com will take an additional six to eight weeks.  The offer to email you an index if you have an older edition of the book stands for Part 2 also.

It feels like What Is It and How Did I Get It? Early Stage Chronic Kidney Disease is being left out so look for a contest for that book around New Year’s.What is it

Until next week,

Keep living your life!

Are you kidding????? Again??????

MenorahGuess what I have.  No, it’s not a Chanukah gift from Bear (although I’ve already gotten one of those). Hang on, I’ll give you a hint: I got it even though I took my annual flu shot.

Yep, this is yet another year I’ve come down with the flu despite having been vaccinated.  I realize that the vaccine only covers the anticipated strains of the flu for a particular season, but how is it I manage to get that strain… the unanticipated one… so often?

This week is the beginning of Chanukah. For those of you who celebrate, I wish you the joyous glow of the season all year round. But wait, it’s also National Influenza Vaccination Week.

According to the U.S. government’s Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/flu/about/season/flu-season-2015-2016.htm,the shot

“National Influenza Vaccination Week (NIVW) is a national observance that was established to highlight the importance of continuing influenza vaccination…. The timing of flu is very unpredictable and can vary in different parts of the country and from season to season. Most seasonal flu activity typically occurs between October and May. Flu activity most commonly peaks in the United States between December and February.”

We’re deep into it now. Well, then, why do I need to keep taking this vaccine that seems to be the wrong one for me each year?

DaVita at http://www.davita.com/kidney-disease/overview/treatment-overview/immunizations–which-shots-you-need-and-why/e/4837 tells us,

“Immunizations may prevent people from contracting other diseases, infections and viruses. The immune system of a person with chronic kidney disease (CKD) becomes weakened, making it difficult to fight off many diseases and infections. Patients with CKD may become more susceptible to illness and even death if they do not receive regular immunization treatment. Getting the proper immunizations is an essential part of a person’s kidney care.”

This tidbit from http://www.esrdnetwork6.org/utils/pdf/immunizations.pdf, which is the website of the Southeastern Kidney Council, Inc. was even more direct.

  • Cardiovascular disease is the leading cause of death among patients with CKD
  •  Infectious diseases are the second most common cause of death among cause of death among patients with CKD

fit the fluIt’s here now. So what do I do about it? I was truly surprised at the OTC (over the counter) medications my former nephrologist recommended to me.  Tylenol Cold?  A steady regime for four days?  This for a CKD patient who has taken ten Tylenol in the last eight years?  But that’s what the man said.

Dylsem Cough Suppression was another OTC he recommended.  (Not the one with the ‘d’ on the label; that could raise your blood pressure.) Then there was the Benedryl that came with a caution not to take it until I was going to sleep. It would knock me out. Oh, and the Mucinex.

The one recommendation I got a kick from was hot tea with lemon and honey (I actually asked him if he knew my mother, but I don’t think he heard me.) laced with whiskey. This for someone who doesn’t drink?

It occurred to me (I do forget this and need to remind myself repeatedly) that when the media refers to the elderly in their public service announcements about the flu, they mean people over 65.  That means me.  I had not been paying attention to any health warnings for the elderly because they didn’t apply to me, or so I thought.  Hah!  Reality smacks me in the face again.

Let’s say you’re one of the lucky ones who has not yet gotten the flu and want to keep it that way. According to Healthfinder.gov, Office of Disease Prevention and Health Promotion, you can protect yourself by doing the following, in addition – of course – to being vaccinated:the flu ends with you

  • Stay away from people who are sick.
  • If you are sick, stay home for at least 24 hours after your fever is gone.
  • Wash your hands often with soap and warm water.
  • Try not to touch your nose, mouth, or eyes.
  • Cover your mouth and nose with a tissue when you cough or sneeze

Note: There is a technical error on their page right now, so you won’t be able to click through.

Knowing me, you’ve probably figured out I just couldn’t watch movies and read while I was sick. Nope, I needed to work. So I did. The print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 now has an index. This new, improved version (Sorry, no crackerjack prize in the box. Uhhhh, you won’t get that joke unless you’re a bit older.) should be available on both Amazon.com and www.BarnesandNoble.com this week.

That is in plenty of time for Chanukah. Remember, there are eight days that the holiday is celebrated. And I’m working on the index for print version of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, so it will be available before Christmas.

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I like giving you gifts. If you already bought the print copy without the index, email me at SlowItDownCKD@gmail.com and I’ll be very happy to send you the index.

And let’s not forget about What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. Consider that an easy introduction for the newly diagnosed and their friends and family.

Book CoverI think I feel another The Book of Blogs: Moderate Stage Chronic Kidney Disease book coming on. Eeeek! Let’s wait until after the New Year to deal with a title for that one.

I wanted to remind you to use the search function if you have the digital version of any of the books. If you need a little reminder or tutorial as to how to use that, email me. I’ll be glad to help.

This year is flying by. The months flew by. Even today flew by.  Is it that I’m older and everything takes longer?  Or is it that I’ve learned to make the most of the hours in the day…month…years. Whatever it is, thank you for letting me share some of your time each Monday.

Until next week,

Keep living your life.

It Would Have Been Nice…

NYC I’m just back from a wonderful week in New York where people traveled great distances to see me, gladly opened their homes to me, and introduced me to interesting – very interesting – people. Between my family and friends, I haven’t felt this loved in a long time…and I always feel loved.

But one thing bothered me. I couldn’t seem to get enough fruit and vegetables each day since I was staying with people who ate differently from me, had different schedules than I did, and took me out to restaurants quite a bit.

Some days, there were no vegetables at all in my diet.  I didn’t like that, so I started playing around with ideas of how I could avoid this problem when next I travel visiting others. I seem to have no problem when I’m by myself during my travels.

This time, I had stopped at little markets on my way from one place to another, but no one was willing to sell me half a banana (for example) and, considering the timing of my market visits, some hadn’t received their fresh fruit and vegetable deliveries yet or had already sold out of them.  Mind you, I’m not talking about big chain supermarkets here. There weren’t any near the elevated or subway train stations I used.fruits and veggies

That’s when I remembered Janet Cook who is a Juice Plus representative, so I took a look at her website. On, my! This is a product I wish I had discovered before being diagnosed with Chronic Kidney Disease.

This is how Juice Plus+ describes itself on her website at http://janetcook.juiceplus.com/content/JuicePlus/en/what-is-juice-plus/what-is-juice-plus.html

Juice Plus+ is whole food based nutrition, including juice powder concentrates from 30 different fruits, vegetables and grains. Juice Plus+ helps bridge the gap between what you should eat and what you do eat every day. Not a multivitamin, medicine, treatment or cure for any disease, Juice Plus+ is made from quality ingredients carefully monitored from farm to capsule to provide natural nutrients your body needs to be at its best.

No great claims, just common sense getting the fruits and vegetables you may be missing every day.  Natural nutrients. Oh, joy! But wait… what’s this about concentrate?

The Cambridge Dictionary at http://dictionary.cambridge.org/us/dictionary/english/concentrate offers us both the noun (name) and verb (action) definitions for concentrate.

Noun – a substance from which water or other substances have been removed

Verb – to make a ​substance ​stronger or ​purer by ​removing ​water or other ​substances

We’re used to the noun definition, but did you realize that, according to the definition of the word as a verb, concentration makes a substance stronger?

I scoured the website for the concentration’s equivalence of each fruit and vegetable but couldn’t find them. Then I realized that’s futile. If they are in the mix, how can you figure out how much of it is in the concentrate?

Janet was quick to offer me the name and email address of their consulting doctor when I explained my quandary to her. I liked that: transparency about their product.

She’d also asked me repeatedly which fruits and vegetables I couldn’t have.  Much to my chagrin, I realized I’d never answered her. I downloaded the ingredients in two of their products and compared them to the Northern Arizona Council on Renal Nutrition Diet which I follow.

 Juice Plus+ Orchard & Garden Blend

20 FRUITS, VEGETABLES, AND GRAINS

  • Apple • Acerola Cherry • Beet • Cranberry • Date • Orange • Pineapple • Papaya • Peach • Prune • Broccoli • Brown Rice Bran • Cabbage • Carrot • Garlic • Kale • Oat Bran • Parsley • Spinach • Tomato •

Juice Plus+ Orchard, Garden Blend & Vineyard Blend

30 FRUITS, VEGETABLES, AND GRAINS

  • Apple • Acerola Cherry • Beet • Cranberry • Date • Orange • Pineapple • Papaya • Peach • Prune • Broccoli • Brown Rice Bran • Cabbage • Carrot • Garlic • Kale • Oat Bran • Parsley • Spinach • Tomato • Artichoke • Bilberry • Blackberry • Black Currant • Blueberry • Cocoa • Concord grape • Cranberry • Elderberry • Pomegranate • Raspberry •

Again, I was taken with the transparency.  However, I found another problem for CKD patients here. I am restricted to 3000 mg. of potassium and 800 mg. of phosphorous daily.  Artichokes and dates are high potassium food. And don’t forget the products are concentrated which means the potassium count will be even higher.  Brans, bilberry, and cocoa are high in phosphorous.

Then there’s the problem that our kidneys are not so great at filtering waste from our bodies when we have CKD. That means the excess potassium and phosphorous stay in our bodies longer and more of it stays.

Globe-ArtichokeAccording to WebMD at http://www.webmd.com/a-to-z-guides/hyperkalemia-causes-symptoms-treatments?page=2

Hyperkalemia {That’s the medical term for excess potassium.} is a common cause of life-threatening heart rhythm changes, or cardiac arrhythmias. It can lead to an emergency condition called ventricular fibrillation. In this condition, the lower parts of your heart flutter rapidly instead of pumping blood.

Untreated, an extremely high amount of potassium in your blood can make your heart stop beating, causing death.

Excess phosphorous is a bit more complicated. Healthline at http://www.healthline.com/health/phosphorus-in-diet#TooMuchPhosphorous6 informs us of the following.cocoa

According to the NIH {This refers to the National Institutes of Health.}, it’s rare to have too much phosphorus in your blood (NIH, 2011). Typically, this problem only develops in people with kidney disease or those who have problems regulating their calcium.

However, too much phosphate can be toxic. An excess of the mineral can cause diarrhea, as well as a hardening of organs and soft tissue.

Having too much phosphorus in your blood can also cause it to combine with calcium, forming mineral deposits in your muscles.

High levels of phosphorus can also affect your body’s ability to effectively use other minerals, such as iron, calcium, magnesium, and zinc.

What is itThere’s more discussion of how CKD can affect the amounts of what we can tolerate and why in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is one of the topics I found the most confusing when I was first diagnosed.

Am I disappointed that I can’t take this product? A little, but not enough to take the chance of hastening the decline of my kidney function even further. Everything we put in our mouths – food or medication – affects our CKD.

Say, were you part of the book giveaway?  Would you like me to congratulate you publicly on the blog? Let me know.  And look for another giveaway when the indexes for the twins are done.IMG_1398

Until next week,

Keep living your life!

Tempus Fugit Iterum or Time Flies When You’re Having Fun, Part 2

Who would have thought there was so much information to share about colonoscopies? And who thought it would actually be interesting? Not me. But acting like a grown up and taking care of my health is both informative (We all know I research everything. It seems to be a compulsion.) and interesting. One site brings me to another.

colonoscopySince last week, I’ve gotten a few questions about the topic. One is how often should this be done? As we learned last week, most people – those without any risk factors – start at the age of 50. I started a bit later than that and had normal results, so was told I wouldn’t need one for another ten years. Yay!

That’s when things changed: sometime during the second decade after the first colonoscopy. This was almost five years ago.  The change was that several colon polyps were removed this time; some because they were bleeding, some because they were the larger kind that could become cancerous (adenoma).

Apparently, bleeding colon polyps are troublesome because they can be the source of your fatigue if you already have low levels of iron as most CKDers do. At least, that’s what my former nephrologist said. Although they were bleeding, removing them did not stop the fatigue.  Maybe it was the sleep apnea…or maybe it was just plain being a Chronic Kidney Disease patient.Bleeding

Now, about that adenoma. AboutHealth at http://coloncancer.about.com/od/glossary/g/Adenoma.htm defines an adenoma in the following way.

An adenoma is a pre-cancerous (benign) growth that may occur in the colon. Adenomas arise from or resemble glands and can lead to colon cancer. This means that if left untreated, some adenomas eventually will develop into colon cancer. If an adenoma becomes cancerous, it is called an adenocarcinoma. Fortunately, adenomas typically are easy to find and to remove before they become cancerous, during routine colon cancer screening tests, such as adenomaa colonoscopy or a flexible sigmoidoscopy.

The American Cancer Society at http://www.cancer.org/cancer/news/specialcoverage/7thingstoknow has an easily understood, easy to read explanation of the whole process of colonoscopy and explains more than I have here.

While it sounds like an awful procedure, more often than not, you’re anesthetized first, both to make sure you don’t move (which might cause a perforation) and for your own comfort.

You are a medically comprised patient.  I’ll repeat that – you are a medically comprised patient.  As such, you need to be treated differently as far as anesthesia. Two things are very clear about anesthesia for us.

  1. The dosage of the anesthesia may have to be modified and
  2. You must let your doctor know on your first visit that you have Chronic Kidney Disease.

I was both disgusted and fascinated by the photos my gastroenterologist sent me after the procedure.  I saw the colon polyps.  I saw the inside of my colon. I simultaneously wanted to get as far away from those revolting pictures as I could AND examine them carefully to see just what was going on inside me.

I keep using the term colon polyp, but haven’t explained it yet. MedicineNet at http://www.medicinenet.com/colon_polyps/article.htm#what_are_colon_polyps will help us out here.

Colon polyps are growths that occur on the inner lining of the large intestine (colon) and usually protrude into the colon. Polyps form when the genetic material within the cells lining the colon changes and becomes abnormal (mutates). Normally, the immature cells lining the colon are programmed to divide (multiply), mature, and then die in a very consistent and timely fashion. However, the genetic changes that occur in the lining cells prevents (sic) the cells from maturing, and the cells do not die. This leads to an accumulation of immature, genetically abnormal cells, which eventually results in the formation of polyps. The mutations may occur as a sporadic event after birth or they may be present from before birth.

I’ve got to be honest. I don’t care how I got mine. I.simply.want.them.gone. It’s come home to me lately that I am closer to 70 than 60. It’s also come home to me lately that I love my life and want to keep it as long as I can.IMG_2867

Last week, I touched on the prep having to be tailored for your CKD, too. Here’s a warning from The National Kidney Foundation at https://www.kidney.org/atoz/content/oralsodium

Patients with chronic kidney disease (CKD) who use bowel cleansing products should be aware of a recent warning issued by the FDA for a type of sudden loss of kidney function or acute kidney injury, as well as, blood mineral disturbances. Phosphate crystal deposition in the kidneys causes the loss of kidney function, which can lead to kidney failure. The medical term for this condition is acute phosphate nephropathy.

The warning relates to the use of bowel cleansing agents, called sodium phosphate (OSP) products as laxatives or in preparation for colonoscopy. OSPs are available both with and without a prescription and are taken by mouth. These products can cause phosphate nephropathy.

On the other hand, The National Institutes of Health at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3678056/  has suggestions, although the parentheses are mine.Miralax

For early chronic kidney disease, PEG (4 L polyethylene glycol) or SPMC (2 L sodium picosulphate plus magnesium citrate) are acceptable. Cases with late chronic kidney disease without dialysis should be prescribed with PEG or PEGA (2 L PEG plus ascorbic acid). SPMC have a risk of hypermagnesemia in patients with kidney disease without dialysis.

Obviously, that’s something to discuss with your nephrologist. By the way, one polyethylene glycol product is Miralax, an over the counter medication. The picture above does not indicate an endorsement of the product.

What is itHere I am in NYC, not spending all that much time thinking about CKD except for the sleep, diet, exercise, and lack of stress (nothing else, though) and having a grand old time with my daughter. In other words, I haven’t paid any attention to the GiveAway for What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. That’s the book Geo was reading in last week’s blog. Do let me know if you’re one of the winners so we can celebrate you.

Oh, and don’t forget about that book’s twin younger siblings.IMG_1398

Until next week,

Keep living your life!

Proof Positive

Name

Standard Range

 5/29/15  9/4/15
TSH

0.450 – 4.500 uIU/mL

 1.900  3.480

diabetes

Name

Standard Range

5/29/15 9/4/15
Microalbumin, Urine

0.0 – 17.0 ug/mL

29.7 38.9

Glomerulus-Nephron 300 dpi jpg

How’s that for proof positive of what stress can do to you?  Other values also shot up, some past the normal range. While .57 to 1.00 mg/dL is within range for creatinine, I knew mine was a bit beyond this range. Now it’s shot up from 1.02 to 1.12.

My glucose – which I’ve spent over a year getting and keeping in range – went up from 94 to 117 mg/dL. The normal range is 65-99.

And my GFR? Oh no, down to 51 from 56.  So now I’m a stressed, sicker person.

Mind you, this was unavoidable stress. There was a medical emergency in the family (No, it’s not me.) and, by default, I was the one handling it. There simply wasn’t anyone else to do it at the time and it had to be dealt with immediately.  It was that kind of emergency.

There went the carefully orchestrated seven hours of sleep a night.  A 36 hour round trip to New Jersey with snatches of sleep here and there killed that.

There went the carefully orchestrated daily exercise. I couldn’t leave the patient alone long enough to even walk the airports… and the patient was incapable of doing it, anyway.

There went the carefully orchestrated ingestion of 64 fluid oz. It was catch as catch can since you can’t bring water into the gate area and they only had flavored or mineral infused water for sale once you passed the entry area.

There went the carefully orchestrated renal diet.  No, wait, that one I was very, very careful about.  I just drove the restaurant servers nuts with all my modifications. I figured if I could hold on to that, maybe I wouldn’t do as much damage to my kidneys and sugar levels as I feared I might.

Now that I’ve started in medias res (Latin for in the midst of things. Something I remember from long, long ago at Hunter College…even in an emergency.), let’s backtrack a little.  The obvious mystery is mg/dL. I have responded ‘huh?’ to this before. It means milligrams per deciliter.

Convert Deciliters To Fluid Ounces

Quantity Deciliters Fluid Ounces

(Courtesy of http://www.csgnetwork.com/directvolcvtdl2fo.html)

You’re probably familiar with mg. if you take any prescription medication.  As for deciliter? (I love that I remember so much from college almost 45 years ago.) That means 1/10 of a liter or 3.8 ounces. For the sake of full disclosure, I did have to look up the equivalent in ounces. So you see, there wasn’t that much change in my values, but enough for me – and my PCP – to notice.

Book CoverTo be perfectly honest, I had to use What Is It and How Did I Get It? Early Stage Chronic Kidney Disease as my bible to even understand these results.  Odd how you forget what you spent so much time learning… especially during an emergency.

TSH means Thyroid Stimulating Hormone. This is what I wrote about it.

“Part of the CBC [comprehensive blood test] which measures your triiodothyronine, which is a thyroid hormone that plays an important role in controlling your metabolism.  If the T3 reading is abnormal, then the T4 test is ordered to find out what the problem might be.

So it’s really a test to see if you need another test to check your thyroid function.  Notice how much closer I came to needing that secondary test while I was under stress. Although I was still within normal range, that was a significant jump.  No wonder my metabolism is screwed up. That is governed by your thyroid.

As for the Microalbumin, Urine, I was out of bounds there and, frankly, that worries me. This

“tests for micro, or very small amounts, of albumin in the urine. Ur stands for urine. Albumin is a form of protein that is water soluble. Urine is a liquid, a form of water, so the albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Well, I know I have Chronic Kidney Disease and I don’t like this indication that stress is making it worse. I’ve worked too hard for the last eight years to let this happen.

I’m hoping the renal dietician can help me get back on track when I see her later today. I follow the renal diet that was designed for me, but now I believe it needs some tweaking.food label

I’ve also been declared pre-diabetic since the last time I saw her.  Although I’ve been to see a diabetes counselor for several months, I’m wondering if today’s appointment with the renal nutritionist will give me ideas about how to include the pre-diabetes diet in the kidney disease diet.

I was down at my Primary Care Doctor’s appointment this past week; I won’t deny it. Add these test results to the family medical emergency plus 9/11 (I watched the buildings from my classroom window and went to more memorials that week than any 10 people should have to go to in a year.) and  unexpected death of a neighbor and I really wasn’t myself.  I finally asked her, “What’s the point of all my hard work if I end up with these results?”

Being the kind of person she is and the kind of doctor she is, she reminded me it was my hard work that kept my rising values from rising even more. Funny, but that got me right back on track.  Thank you to my PCP and other concerned doctors like her.

Talking about testing, here’s something locals should know about and it’s this Saturday, folks.

11990439_10204944411870363_4775265224050810062_n

Call me crazy, but I’m having quite a bit of fun indexing The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. It seems to me that I’d rather be doing that or researching than working on my fiction.  Hmmmm, what am I telling myself?

IMG_1398

 

Until next week,

Keep living your life!

They’re Not Two Separate Things

I know someone who is mentally ill.  You do, too, although you may not be aware of it. PTSD, bipolar, personality disorder, poor impulse control, schizophrenia, braindepression, anxiety disorders, obsessive-compulsion, even eating disorders. I could go on and on with diagnoses we know nothing about when we meet the person. (Well, maybe we would with an eating disorder.) And why should we?

With medication, this person can function in the world… and function well. For those of you who are successfully treating your psychiatric illness holistically, whatever it is you are taking or doing that works for you will be included in the category of medication for the purposes of this blog.

But what if the person is not taking the medication necessary? What if they’re not and they have CKD? What if they are and have CKD? How does that affect their kidneys?

I came across a 2002 grant proposal on the National Institutes of Health site at http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-02-009.html which made clear that there is a correlation.

“There is substantial evidence that severe chronic illness may be associated with and exacerbated by co-existent mental disorders such as depression, anxiety NIHdisorders, schizophrenia, and eating disorders.  Nonetheless, few studies have addressed the natural history and consequences of co-existent mental disorders on chronic diseases of interest to the NIDDK, such as diabetes mellitus, chronic renal disease and obesity and eating disorders.”

The person I know has two parents with CKD. That means he has to be extra vigilant about preventing CKD. But can he with the impulsive, irrational thinking he occasionally experiences?

One of the many complications of Chronic Kidney Disease according to The Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/complications/con-20026778 is

“Damage to your central nervous system, which can cause difficulty concentrating, personality changes or seizures”

Difficulty concentrating.  Personality changes. Just as in mental illness.

Let me talk about that term a bit. By mental illness, I mean a psychiatric condition rather than a physical one, but one that requires daily treatment, just as diabetes or CKD does. You watch your diet, don’t you? And try to stay away from stress? There’s another kind of daily attention psychiatric patients need to adhere to.

And here’s where it gets muddled. Just as CKD, a physical condition, can cause mental problems, a psychiatric condition can cause physical conditions.  The two are wrapped up in each other. You can’t divorce the physical from the mental or vice-versa. You are one person with all these interrelated parts.

Mental illness is far more prevalent than you think… and that’s with its being ‘out of the closet,’ so to speak, in recent years. The Centers for Disease Control’s Fact Sheet about mental health surveillance at http://www.cdc.gov/mentalhealthsurveillance/fact_sheet.html  contains the following statement.CDC

“According to the World Health Organization, mental illness results in more disability in developed countries than any other group of illnesses, including cancer and heart disease. Other published studies report that about 25% of all U.S. adults have a mental illness and that nearly 50% of U.S. adults will develop at least one mental illness during their lifetime.”

Let me make it worse.  This was in 2002, 13 years ago.

In 2012, the CDC had this to say about mental illness and chronic disease:

“One common finding is that people who suffer from a chronic disease are more likely to also suffer from depression. Scientists have yet to determine if having a chronic disease increases the prevalence of depression or depression increases the risk of obtaining a chronic disease.”

This is from a study about chronic disease and mental health in the workplace. You can read more about that at http://www.cdc.gov/nationalhealthyworksite/docs/Issue-Brief-No-2-Mental-Health-and-Chronic-Disease.pdf

I know little about medications for mental illness except for those prescribed for my friend.  As an example of how drugs for psychiatric conditions may or may not interact with your physical ailments, let’s talk a bit about his drugs.

zyprexaWhen my bipolar friend has a manic episode, an anti-psychotic – Zyprexa (generic name Olanzapine) – is prescribed. WebMD at http://www.webmd.com/drugs/2/drug-1699/zyprexa-oral/details# tells us

“This medication can help to decrease hallucinations and help you to think more clearly and positively about yourself, feel less agitated, and take a more active part in everyday life.”

Okay, sometimes my friend needs that, but there are also things he doesn’t need.

glucose“This drug may infrequently make your blood sugar level rise, which can cause or worsen diabetes. Tell your doctor immediately if you develop symptoms of high blood sugar, such as increased thirst and urination. If you already have diabetes, be sure to check your blood sugars regularly. Your doctor may need to adjust your diabetes medication, exercise program, or diet.

This drug may also cause significant weight gain and a rise in your blood cholesterol (or triglyceride) levels…. These effects, along with diabetes, may increase your risk for developing heart disease. “

Not so great for someone that has two parents with CKD, one with CKD caused by diabetes. As for the cholesterol or triglyceride levels,  we could be getting pretty close to heart disease here, as mentioned above. Nothing about the kidneys, yet diabetes is the leading cause of CKD.

What else was he recently prescribed? Oh, yes, lithium.  He’s been taking that off and on since he was 14 and first diagnosed with bipolar disorder. Drugs.com at http://www.drugs.com/sfx/lithium-side-effects.html made me weep – not that this was going to help anything. I keep reminding myself that this is not usual when taking the drug, but my mind keeps placing the image of his two CKD parents before me.

“Moderate reversible increases in blood urea nitrogen and serum creatinine as well as proteinuria have been observed in patients with lithium toxicity. Rarely the decreases in glomerular filtration have been persistent. A variety of renal effects have been reported and include glomerular sclerosis, interstitial fibrosis, chronic interstitial nephritis, nephrotic syndrome, renal tubular acidosis and tubular atrophy.”Glomerulus-Nephron 300 dpi jpg

Sometimes you need to take a risk to save your life. I’m sure that’s what my friend’s doctors are doing here. I’ve known him all his life. I hope they’re doing the right thing.

On a more positive note, Amazon tells me all three books are now available in the Japanese market as well as being available in Europe and other areas.  Nothing like getting the word about CKD Awareness out to the entire world.IMG_1398What is it

Today is Labor Day. Thank you to all those union organizers that were jailed repeatedly- like Benjamin Binenbaum, my maternal grandfather – for the advantages they won for us.

Until next week,

Keep living your life!labor day

It’s the Funniest Thing…

You want to know about Chronic Kidney Disease brain fog?  Let me tell you about Chronic Kidney Disease brain fog.  I wrote a book about the Book Coverexperiences of the newly diagnosed CKD patient based upon my own experience – What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.  Nice job on that one, Gail.

Four years later, I published The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 & 2… with neither a topic listed for each blog nor an index. Well, how the heck are you supposed to find the information you’re looking for??? And it’s taken me this long to figure that out. Take it from me, CKD brain fog exists.

So, what is this CKD brain fog of which I speak? According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog:

“…people feel as if there is a thick fog dampening their mind. While the medical and mental health establishments don’t generally recognize brain fog as a condition, it’s a surprisingly common affliction that affects people of all ages. Symptoms include pervasive absentmindedness, muddled thought processes, poor memory recall, difficulty processing information, disorientation, fatigue, and others.”

You can read more at http://www.rodalenews.com/brain-fog.

It was www.naturopathconnect.com (a link that sometimes works, sometimes doesn’t) that offered me my first insight into how our kidneys and brain fog are connected.

bottled water“Make sure your liver and kidneys are not overloaded or congested. When your liver and kidneys are not functioning well, they are less able to clear your system of the multitude of toxins that float around in your bloodstream. When your body is overloaded with toxins, your brain suffers as well….Dehydration may be a key factor in less-than-optimal kidney function, so water is essential to keep the kidneys in tip-top shape.”

Got it – toxins.  Uh, what toxins?  And how do they affect the brain, I wondered.  Back to researching.

Dr. Martin Morrell of healthtap.com offered an explanation. However, this is not an endorsement of him or the site.  I am not a fan of asking online doctors unfamiliar with your particular medical history for advice.

“… if your blood urea increases, which is supposed to be cleared by your kidneys, this ‘poison’ will affect the ability of the brain to work properly.”

Oh, blood urea. Well that explains it. But how can I explain blood urea?  I’ll allow the experts to do that.

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

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

In the U.S., we call this test B.U.N. or Blood Urea Nitrogen Blood Test.  So as I understand it, if your protein intake is high, more urea is produced.  But since your kidneys are already compromised by CKD, the toxins remaining in your body are not eliminated as well and are still in the blood that flows through your brain.  Okay, that’s logical.protein

The more urea remaining in your system, the more sluggish your brain.  It does sound like a perfectly formed ‘if-then’ equation from probability theory. The only difference here is that this is not a theory, but, rather, what we may encounter as CKD patients.

What to do?  What to do?  Obviously, keeping our protein intake low will help.  My renal diet limits me to five ounces of protein a day. I rarely ingest more protein than that. Well, bully for me!

So how else can I alleviate my sometimes brain fog…especially since I’m working on three books at the same time as well as wanting to make some sort of index for the books mentioned above?

I was all over the web on this one and found that besides what I was already doing for my CKD, I could also avoid heavy metal (and I always thought that was a kind of music) exposure, use a blue light, get myself some natural sun light, check my medication side effects and lots more.

Dr. Isaac Eliaz who wrote the RodaleNews article in 2013 suggests several more natural remedies:

  1. Improve your diet and digestion.
  2. Detoxify.
  3. Support cell power.water to cells
  4. Control stress.
  5. Exercise.

I can agree with most of the items on Dr. Eliaz’s list no matter what’s causing the brain fog, but with CKD I’d talk over detoxing and/or taking supplements to support cell power with my nephrologist before actually following that advice.  Some nephrologists are dead (Yikes! Wrong word choice) set against detoxifying while others have a more eclectic approach to gentle detoxifying.

Supplements are a whole other story. There are so many different approaches here that I usually research whichever supplement I’m considering, then bring that research to my nephrologist to talk it over with him. Result: some supplements I agreed weren’t looking so good for me after our talk; others, he agreed were well worth a try.

Bahar Gholipour of Live Science at http://www.livescience.com/45502-foggy-brain-causes.html writes about other possible causes of brain fog. She includes multi-tasking, pregnancy, chemotherapy, menopause, and chronic fatigue syndrome among the causes. If any one of these causes exists in your life, maybe it’s not CKD brain fog you’re experiencing… or maybe it is… or maybe it’s a combination.  No one seems to be certain just what can cause brain fog, although I’m pretty comfortable with the explanations I’ve offered above.

It’s real.  Brain fog could be affecting you, especially if you have CKD.  And from what I’ve read, once you’ve gotten your CKD slowed down as much as possible, the other ‘fixes’ are easy.Kidney Arizona

Here’s a quick reminder about The National Kidney Fund of Arizona’s Path to Wellness screening on Saturday, September 19, 2015 at the Indo American Cultural Center. This consists of free blood and urine testing, which is evaluated onsite to assess for the risk of diabetes, heart and kidney diseases, and chronic disease management education, plus overall health assessment and one-on-one consultation with a physician for the screenees. A follow-up 6-week series of Healthy Living workshops that teach chronic disease self-management skills is then offered.

Just like last week, one last thing: P2P’s Chronic Illness Buy & Sell page is on Facebook IMG_1398at https://www.facebook.com/groups/P2PBuy.Sell/.  It will be the place to go for anything chronic illness related. My first book is advertised there and both The Book of Blogs: Moderate Stage Chronic Kidney Disease books will be soon, too.

Until next week,

Keep living your life!

Sexy!

IMG_2867Sometimes as you age, you find that sex is not that important… or, at least, the hanging from the chandeliers kind isn’t. *sigh* Add to the age factor that you and/or your partner may have physical limitations or be taking medication that impedes indulging as often and as fervently as you used to. *sigh*sigh* Now add your Chronic Kidney Disease to this equation. *sigh*sigh*sigh*

Does this mean you’re doomed to a life of fervent hugging and kissing and no more? Not at all, my friends, not at all.

Let’s take a look at what I had to say (oh, all right, write) about the glorious, yet somehow still taboo, topic of sex for CKD patients. Those of you Book Coverwith a print copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease will find this begins on page 100. If you have the digital version, do a word search for ‘sex.’ It’ll be the third finding on the search.

I haven’t found too much about sex that’s different from the problems of non-CKD patients although with this disease there may be a lower sex drive accompanied by a loss of libido and an inability to ejaculate.  Usually, these problems start with an inability to keep an erection as long as usual.  The resulting impotency has a valid physical, psychological or psycho-physical cause.

Some of the physical causes of impotence, more recently referred to as Erectile Dysfunction [E.D.] for a CKD patient could be poor blood supply since there are narrowed blood vessels all over the body.  Or maybe it’s leaky blood vessels.  Of course, it could be a hormonal disturbance since the testicles may be producing less testosterone and the kidneys are in charge of hormones. Possibly, you’re tired from CKD induced anemia.  I’ve just mentioned a few possibilities. The silver lining is that there are almost as many treatments as there are causes.

While E.D. can be caused by renal disease, it can also be caused by diabetes and hypertension. All three are of importance to CKD patients. Sometimes, E.D. is caused by the medications for hypertension, depression and anxiety.  But, E.D. can also be caused by other diseases, injuries, surgeries, prostate cancer or a host of other conditions and bodily malfunctions. Psychologically, the problem may be caused by stress, low self-esteem, even guilt to name just a few of the possible causes.

blood pressure 300dpi jpgThe usual remedies for E.D. can be used with CKD patients, too, but you need to make certain your urologist and your nephrologists work together, especially if your treatment involves changing medications, hormone replacement therapy or an oral medication like Viagra. There are other treatments not mentioned here….

Sometimes, the treatment is as simple as counseling and the cessation of smoking and alcohol.  Hmmmm, as CKD patients, we’ve already been advised to stop smoking and drinking.  This is another reason for male CKD patients to do so.

Women with CKD may also suffer from sexual problems, but the causes can be complicated.  As with men, renal disease, diabetes and hypertension may contribute to the problem.  But so can poor body image, low self-esteem, depression, stress and sexual abuse [It’s become clear since the book was published in 2011 that men also may suffer from these conditions]. Any chronic disease can make a man or a woman feel less sexual.

Some remedies for women are the same as those for men.  I discovered through my research that vaginal lubricants and technique, routine, and environment changes when making love, warm baths, massage, and vibrators can help. Again, there are other, more medical treatments.

Common sense tells us that sex or intimacy is not high on your list of priorities when you’ve just been recently diagnosed.  I was obsessed with my [e.g. premature and unnecessary] revulsion of dialysis and needed to hear over and over again that it was a couple of decades too early to worry about this.  I was also tired and didn’t know why, just worried that I would always need an afternoon rest period.… Then I discovered that vaginal strep B can occur in women over 60 with CKD.  Luckily for me, if you catch it and treat it early on, it’s just an infection that you take antibiotics to kill.  If you don’t treat it early, you just may be looking at some serious consequences.

Since we’re in the early stages of CKD, chances are the sexual problem is not physical other than being tired.  I never talked to my nephrologist about sex because I felt there was no reason to, and I had a partner who was willing to work around my rest periods until I had the energy.  But, I sleepam convinced, that if I ever do feel I have reason, I would talk to him. I’m older and prefer women doctors for the most part especially when it comes to private matters but this man is the specialist who knows far more than I do about this disease I am struggling to prevent from progressing.  There is a point when you realize your life is more important than not being embarrassed.

Sometimes people with chronic diseases can be so busy being the patient that they forget their partners have needs, too.  And sometimes, remembering to stay close, really close as in hugging and snuggling, can be helpful.  You’ve got to keep in mind that some CKD patients never have sexual problems, no change in frequency and depth of desire and no impairment in the act itself.  This is not the time to make yourself the textbook case of the CKD patient who suffers sexually because of her disease. The best advice I received in this area was make love even if you don’t want to.  Magic.

I wrote that five years ago and very little has changed. You’ll see that I added an update in brackets and omitted outdated information.  Otherwise, my advice is the same.  But keep in mind that I am not a doctor and have never claimed to be one. Speak to your nephrologist if you feel your sex life is being hampered by your CKD.

Check The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 to see if they have more information about sex and our disease.IMG_1398

Wow!  I keep the blog to about 1,000 words and I’m already over.  It’s just as well, we’re off to find some delicious candles and add some sexy music to the iPod… just in case we’re in the mood sometime soon, you understand.

Until next week,

Keep living your life!

On the Sea, On the Sea, On the Beautiful Sea – with apologies to lyricist Harold R. Atteridge

I’ve mentioned a time or two (Oh, okay, much more than that.) we’d been to Vancouver and Alaska recently on what was supposed to have been our over two year delayed honeymoon.  It was soon downgraded to our ‘woebegone vacation.’ I never told you why. IMG_1320

It was so very unfair. Bear has always wanted to take me to see Alaska. He’d been sent there as a young soldier. Obviously, the beauty of the state impressed him. And he’s been talking to me about taking a cruise for the entire time I know him. Having lived on islands my whole life until I moved to Arizona, ferries were enough of ‘cruising’ for me, but my love wanted to go on one so badly. I was the one who wanted to see Vancouver – simply because I’d never been there – so that’s why we sailed from there.

What happened was unexpected…and scary. On our second day in Vancouver, it became clear Bear couldn’t walk and was in pain. We just figured it was some sort of inflammation where he’d had foot surgery two years ago. This had happened before. We got a knee scooter (People in Vancouver thought it was a new form of transportation.), he took pain meds, and we figured we had it covered. So we boarded our cruise ship.

That may have been a mistake. Two days into the cruise, Bear started running a high temperature and was in agony.  Off we went to sick bay as a cruisecruise ship’s infirmary is commonly called. That’s where we discovered he had a dangerous infection called cellulitis that was rapidly taking over his leg. It had already risen from his foot to above his knee.

According to WebMD at http://www.webmd.com/skin-problems-and-treatments/tc/cellulitis-topic-overview

Cellulitis is a common skin infection that happens when bacteria spread through the skin to deeper tissues. Most cases are mild and last several days to a couple of weeks. But cellulitis can sometimes progress to a more serious infection, causing severe illness that affects the whole body (sepsis) or other dangerous problems.

It looked like he was heading toward sepsis. Bear was ordered to stay in bed except for the twice a day he returned to sick bay for IVs (That’s an intravenous drip feed: a needle is inserted into your vein via the arm and whatever is in the bag attached to that needle is dripped into your vein.) of Rocephin.

Here’s when Bear’s cellulitis treatment becomes relevant to Chronic Kidney Disease patients. The generic name for Rocephin is ceftriaxone it may be harmful to the kidneys.  It’s a powerful antibiotic used

to treat many kinds of bacterial infections, including severe or life-threatening forms such as meningitis.

You can read more about it on Drugs.com at http://www.drugs.com/mtm/ceftriaxone-injection.html

The Skeptical Scalpel, a doctor’s blog at http://skepticalscalpel.blogspot.com/2012/10/is-normal-saline-bad-for-kidneys.html, offered some insight about the saline solution Bear was given to rehydrate him. Again, I’m looking at this solely from the CKD patient’s viewpoint:

Is normal saline bad for the kidneys? Yes.Skeptical Scalpel

To be fair, in the particular blog I viewed, it was “renal failure in critically ill ICU patients” that was being referred to in connection with saline drips.

Ketorolac Tromethamine was also being administered. What’s that you ask?

Ketorolac is a nonsteroidal anti-inflammatory drug (NSAID) similar to ibuprofenindomethacinnaproxen, and many others. Ketorolac blocks prostaglandin synthesis. Prostaglandins have many effects in the body including their role in pain and inflammation.

It’s a NSAID, boys and girls, something we – as CKD patients – are warned off.  Thanks are in order to http://www.medicinenet.com/ketorolac_tromethamine-ophthalmic/article.htm for the definition.

All the while, his blood pressure was being monitored. Of course, an x-ray was taken to see if there were a break and two blood tests were administered two days apart.  All good medical practice.blood draw

On the second day of onboard treatment, Augmentin, another antibiotic, was added to Bear’s treatment. This is safe for CKD patients… unless your kidney function is less than 30%. Then the dosage needs to be adjusted. The manufacturers themselves offer this information.

It took four days for Bear to be well enough for the IVs to be discontinued. He was worn out. The cruise was a bust, but he was getting better.

We left the ship with a firm admonition from the doctor to see Bear’s orthopedist (who referred us to our pcp since this was not a surgical problem) as soon as we got home and enough antibiotic to last until we left Alaska. Of course, our doctor had to be on vacation herself just then, so Bear saw someone who didn’t know him except from reading his medical records.

Being one smart man and remembering that the ship’s doctor had said he was worried that the infection may have settled around the hardware that was inserted during his previous foot surgery, Bear figured foot = podiatrist.  It’s a good thing he did. She immediately sent him for an ultrasound for what she feared might be a blood clot at the site of the painful bump on his leg from one of the two times he fell. Not being able to walk can be tricky on a rolling ship.  Luckily, there wasn’t one.Bear's foot

We had to face the obvious. Bear was going to have to quit his dream part-time job in a wood workers’ store. But wait! One door closes and another opens. Now he can work full time in his shop.  He can rest whenever his foot starts to bother him and then just put his shop boots back on and go back to work. He can also not work in the shop if he so chooses… and he doesn’t have to call in sick.

The point of the blog is that while anyone can mysteriously become ill at any time, the rules are different for us as CKD patients. Pay attention to your compromised immune system and what drugs your doctors are trying to give you.  If I don’t recognize the drug, I run it by my wonderful nephrologist who never fails to respond to my texts quickly.

You know, this blog started as publicity for my books.  Now I become so involved with whatever the topic is that I often forget that. I hope you don’t. As much as I’d like to sell you some books, I also want you to know you can borrow them from the Kindle Owners’ Lending Library for free. That’s at Amazon.com. You can also ask the librarian at your local brick and mortar library to order my books.

Book Cover

Until next week,

Keep living your life!IMG_1398

A Connection You Can Do Without

McKee You know how you run into people you used to know every once in a while. That’s exactly what happened for me… but we discovered we had chronic disease in common. That’s why this one’s for Jeanne, a former colleague who is highly involved in spreading awareness of Scleroderma, just as I am of Chronic Kidney Disease.  Just as we have a connection, so do Scleroderma and Chronic Kidney Disease. (Cool way to slide into today’s topic, isn’t it?)

According to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/scleroderma/basics/definition/CON-20021378, scleroderma is

a group of rare diseases that involve the hardening and tightening of the skin and connective tissues — the fibers that provide the framework and support for your body.

In some people, scleroderma affects only the skin. But in many people, scleroderma also harms structures beyond the skin — such as blood vessels, handsinternal organs and the digestive tract. Signs and symptoms vary, depending on which structures are affected.

Scleroderma affects women more often than men and most commonly occurs between the ages of 30 and 50. While there is no cure for scleroderma, a variety of treatments can ease symptoms and improve quality of life.

Did you catch “such as blood vessels” and “internal organs” in that definition? And that there’s no cure? Are you beginning to see the connection?

Book CoverOn page 129 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I’ve defined an ACE inhibitor as “A blood pressure medication that lowers protein in the urine if you have CKD.”

So ACE inhibitors are helpful in CKD, but – as you’ll soon read – harmful in Scleroderma. We’ve probably all been in the position of having to choose the least harmful treatment, rather than the most helpful and here it is again.

The Scleroderma Care Foundation at http://www.sclerodermatt.org/articles/better-health/204 tells us:

Exposure to angiotensin-converting enzyme inhibitors prior to the onset of renal crisis in patients with Scleroderma increases the risk of death, according to 1-year findings from the prospective observational International Scleroderma Renal Crisis Survey.

I went to Scleroderma.Org for this chart to help us understand which type of Scleroderma affects the kidneys.types-scleroderma-chart

We can see that Systemic scleroderma is the one that we, as CKD patients, need to pay attention to.  The following is also from Scleroderma.Org.

Systemic scleroderma (systemic sclerosis) The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. The tissues of involved organs become hard and fibrous, causing them to function less efficiently. The term systemic sclerosis indicates that “sclerosis” (hardening) may occur in the internal systems of the body.

I’m sure you caught “kidneys” in that definition.

Well, what about symptoms?  No one seems to know what causes Scleroderma, but maybe there’s more information about the symptoms. WebMD at http://www.webmd.com/arthritis/understanding-scleroderma-symptoms had this one covered.

  • Swelling, stiffness, or pain in the fingers, toes, hands, feet, or face
  • Puffy skin
  • Discolored skin
  • Fingers and toes that react strongly to cold — they may look white and hurt. This is called Raynaud’s phenomenon.
  • Red spots on the fingers, palms, face, lips, or tongue. These are called telangiectasias. They happen when tiny blood vessels are widened.
  • Ulcers or sores on fingertips, knuckles, or elbows
  • Fatigue or feeling tired
  • Shortness of breath, caused by heart or lung damage
  • Problems digesting food — for example, heartburn, trouble swallowing, or food moving slower than usual through your system

Some of the latter symptoms may be the same as those for CKD, but this does not automatically mean you have CKD…or Scleroderma for that chartmatter.  See your doctor to be tested for each if you have CKD and think you’re developing Scleroderma or vice-versa.

Now there’s another question.  What is the testing for Scleroderma? Our old friend Lab Tests Online at https://labtestsonline.org/understanding/conditions/scleroderma/start/3 offered a complex answer to this question.  Below are the usual tests, but there are groups of others to determine which organs are affected, the severity of the disease, the type of Scleroderma, etc.

A battery of tests is performed to detect the presence or absence of autoantibodies that are generally associated with the diagnosis of scleroderma. They include:

So now we know what Scleroderma is, how it can be determined if you have it, what type you have if you do, and how it may be connected to CKD. By the way, to date, there is no way of preventing this disease.

Now the biggie.  What can you do about it? Time to check with MedicineNet at http://www.medicinenet.com/scleroderma/page4.htm#what_is_the_treatment_for_scleroderma

Treatment of scleroderma is directed toward the individual features affecting different areas of the body.

Aggressive treatments of elevations in blood pressure have been extremely important in preventing kidney failure. Blood pressure medications, particularly the angiotensin converting enzyme (ACE) inhibitor class of drugs, such as lisinopril, are frequently used.

scleroderma-systemic-sclerosis_3See what I mean about choosing the medication that prevents the most harm rather than one that does the most good?

While research is ongoing, there are support groups for Scleroderma patients just as there are for CKD patients, although I wasn’t able to find one for sufferers of both diseases. The Scleroderma Foundation at http://www.scleroderma.org/site/PageServer?pagename=chapter_locator has an interactive map with addresses of in person support groups. Online, there’s Dailystrenth.org at http://www.dailystrength.org/c/Scleroderma/support-group, as well as a Facebook page at https://www.facebook.com/pages/Scleroderma-Support-Group/498039106944584. Of course there are others, but these might be the best places to start if you’re looking for support groups.

I am sitting here writing my blog in the midst of a post vacation cold that’s taking three weeks to run its course. Ah, the joys of having a compromised immune system (She wrote sarcastically.). After writing this blog, I’m feeling very lucky that this is all I’m dealing with as a result of my CKD.IMG_1398

Until next week,

Keep living your life!

A Cautionary Tale 

Memorial DayToday is Memorial Day here in the U.S. It’s a celebration of our fallen warriors, the ones who fought for us so we wouldn’t have to fight for ourselves… and it began as a celebration of freed slaves honoring those who fought for their freedom way back in 1865. As Time.com at http://time.com/3894406/who-invented-memorial-day/ phrases it:

On May 1, 1865, freed slaves gathered in Charleston, South Carolina to commemorate the death of Union soldiers and the end of the American Civil War. Three years later, General John Logan issued a special order that May 30, 1868 be observed as Decoration Day, the first Memorial Day.

I married a retired military man. Memorial Day has had more meaning for me in the last eight years than ever before in my life.  It’s been a revelation, as our wedding invitation stated:

The Retired Lieutenant Colonel

Paul Arthur Garwood

and

The Former Wannabe Hippie4wedding

Gail Rae

Invite you to our wedding reception

Thank you again to all those who gave their lives so I wouldn’t have to.

Being a bit dramatic here, I also sort of saved my own life last week by saving my kidneys from further damage.  I know, I know. There’s no comparison, but it sure is a good way to get into today’s topic.

I wrote about dreaming about my bladder last week.  Well, I decided I needed to take that dream a bit more seriously. Off I went to my local pharmacy for an over the counter (OTC) urinary tract infection (UTI) kit.

I chose the Azo Brand because it is

the same urinary tract infection test used in many doctor’s offices, to determine if the bacteria that cause a UTI are present. {The description continues.} Then call your doctor with the results. The most reliable, over-the-counter UTI home test available, AZO Test Strips offer two UTI tests in one – including both Leukocyte (white blood cells) and Nitrite tests – which makes them more reliable than nitrite-only tests. (Doctors look for Leukocytes as well as Nitrites in diagnosing UTIs.)

test-strips-right_3Leukocytes are higher when you are fighting an infection. Unfortunately, that’s any infection. So what about nitrites?

When the urinary tract is infected by harmful bacteria then it leads to the development of nitrites as a byproduct. The kidneys are responsible for filtering the blood and for the elimination of unwanted waste materials from the body. However, they are incapable of filtering out the nitrites. The nitrites can however travel from the kidneys into the bladder and get stored there. They are then passed out along with the urine. Therefore the presence of nitrites in urine is generally an indication of the presence of a urinary tract infection.

Thank you for that information, Diseases List at http://diseaseslist.org/nitrites-in-urine/  Notice our kidneys are NOT at fault for once.

So far, so good.  I mean bad.  You take the test by urinating on a dipstick.  First you urinate for a second or two, then hold the dipstick under the urine stream, and then sort of mop up the excess urine.  Pay attention when you do this or it can get messy.

There were three test strips with accompanying color charts in the box.  I took all three. (Did I ever tell you about a family member who took the same OTC pregnancy test a dozen times just to be sure?  This doubt must run in the family.) You guessed it. All three were not just positive for UTI, but highly positive.

As you know, doctors don’t prescribe medication over the phone so I tried to make an appointment with my primary care doctor.  She is much sought after and had no openings that week, much less that day. She is part of a practice so I took an appointment with another doctor in the practice, one I had seen a time or two before under the same circumstances.

He had my chart in front of him.  I was wearing a medical alert bracelet. I told him three times I had Chronic Kidney Disease. In addition to ordering ciprofloxacin 250 mg. – which is safe for certain stages of CKD for certain periods of time at certain dosages – he ordered phenazopyridine 200 mg. for the pain. He kept talking about not being alarmed when it changed the color of my urine.

I didn’t feel like he’d heard a word I said.  I wasn’t too worried, because I always check with the pharmacist before taking any new medication.  She was alarmed, told me not to buy this medication, and that she would be contacting this doctor to tell him prescribing phenazopyridine for anyone with CKD was inappropriate.  This is the second time this has happened since I was diagnosed with CKD.

The National Institutes of Health warn that you tell your doctor if you’ve had kidney problems should he/she prescribe this drug.  I did… a NIHminimum of three times. This is what Drugs.com at http://www.drugs.com/mtm/phenazopyridine.html had to say about this pain reliever.

What is the most important information I should know about phenazopyridine?

You should not use phenazopyridine if you have kidney disease.

Okay, beating a dead horse here (I’m just so damned annoyed!), so let’s see if we can figure out why CKD patients should not be using this drug. Uh-oh, MedicineNet at http://www.medicinenet.com/phenazopyridine-oral/article.htm tells us

Although the exact mechanism of action is unknown, phenazopyridine is thought to provide relief of symptoms of UTIs by acting as a local anesthetic on the lining of the urinary tract.

All right, let’s try this another way then.  Why shouldn’t CKD patients take this drug? After looking at Wikipedia – even taking into account that anyone can edit these entries – I’m wondering why anyone would take it at all. It’s a form of Azo dye.

Less frequently it can cause a pigment change in the skin or eyes, to a noticeable yellowish color. This is due to a depressed excretion via the kidneys causing a buildup of the drug in the skin, and normally indicates a need to discontinue usage.

kidney functionWhat! Exits via the kidneys? Excretion can be depressed?  Nope, not for me, not for you either. Take a look at http://en.wikipedia.org/wiki/Phenazopyridine

Here’s the caution: sure we trust our doctors and those doctors they trust, but check with your pharmacist, too.

Hey, where are the weirdest places to read my CKD books entries?  We got some really weird ones, but we want to see yours.  The contest runs until the end of the month.  That’s plenty of time to snap a picture and post it. Not on FB?  Include it as a comment on the blog or email it.  You can even post it on Twitter.Digital Cover Part 2 redone - Copy

Book Cover

Until next week,

Keep living your life!DIGITAL_BOOK_THUMBNAIL

What a Weird Dream

Part 2I woke up today realizing I’d been dreaming about my bladder.  Sometimes that’s a somatic clue to wake up and empty it, but I’d done that already. Hmmm, was I being told to look into the different aspects of the bladder?  Oh, maybe the dream DIGITAL_BOOK_THUMBNAILwas pointing toward the connection between Chronic Kidney Disease and the bladder. By now, you’ve probably realized everything in my world points to CKD.

To my way of thinking, if I were going to dream of anything CKD related, I should have been dreaming about the photos of you reading one of my books in a weird place that you’ve posted on SlowItDownCKD’s Facebook page to win a free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1. That would make sense, wouldn’t it?

What is it

But, no.  It was the bladder.  Okay, then, let’s take a look at the bladder. As usual, we’ll start at the beginning with a definition. Many thanks to the ever reliable MedicineNet at http://www.medicinenet.com/script/main/art.asp?articlekey=2472 for the following:

A hollow organ in the lower abdomen that stores urine. The kidneys filter waste from the blood and produce urine, which enters the bladder through two tubes, called ureters. Urine leaves the bladder through another tube, the urethra. In women, the urethra is a short tube that opens just in front of the vagina. In men, it is longer, passing through the prostate gland and then the penis. Also known as urinary bladder and vesical.

Notice the mention of the kidneys. Notice also the urine flows from the kidneys to the bladder, not vice versa.  Doesn’t help much to explain the dream.  I wonder if a bladder infection might explain more.

Another standby, WebMD, at http://www.webmd.com/a-to-z-guides/understanding-bladder-infections-basic-information explains:

Bladder infections are known as cystitis or inflammation of the bladder. They are common in women, but very rare in men. More than half of all women get at least one bladder infection at some time in their lives. However, a man’s chance of getting cystitis increases as he ages, due to in part to an increase in prostate size….

Bladder infections are not serious if treated right away. But they tend to come back in some people. Rarely, this can lead to kidney infections, which are more serious and may result in permanent kidney damage. So it’s very important to treat the underlying causes of a bladder infection and to take preventive steps to keep them from coming back.kidney location

Oh, so repeated bladder infections can lead to kidney infections, although rarely.  Maybe we’d better take a look at the symptoms of bladder infections… just in case, you understand.

This was the point in my research that I once again appreciated how user friendly, yet detailed, the Mayo Clinic is. The following information may be found at http://www.mayoclinic.org/diseases-conditions/urinary-tract-infection/basics/symptoms/con-20037892

Part of urinary tract affected      Signs and symptoms

Kidneys (acute pyelonephritis)   Upper back and side (flank) painurinary-tract-infection-uti-picture

High fever

Shaking and chills

Nausea

Vomiting

Bladder (cystitis)                            Pelvic pressure

Lower abdomen discomfort

Frequent, painful urination

Blood in urine

Urethra (urethritis)                        Burning with urination

Let’s change direction here and take a look at pyelonephritis since that involves the kidneys.

at http://www.niddk.nih.gov/health-information/health-topics/kidney-disease/pyelonephritis-kidney-infection/Pages/index.aspx has this information.

Pyelonephritis is caused by a bacterium or virus infecting the kidneys. Though many bacteria and viruses can cause pyelonephritis, the bacterium Escherichia coli is often the cause. Bacteria and viruses can move to the kidneys from the bladder or can be carried through the bloodstream from other parts of the body. A UTI in the bladder that does not move to the kidneys is called cystitis.

However, the site carefully explains that a bladder infection or a structural abnormality that causes urine to flow back into the kidneys are the two most usual causes.  So we’re back to looking at bladder infections after this little detour.

Location of KidneysFor information about what might cause a bladder infection, I shot over to Healthline at http://www.healthline.com/health/bladder-infection#Overview1

Bladder infections are caused by germs or bacteria that enter through the urethra and travel into the bladder. Normally, the body is able to remove the bacteria by clearing it out during urination. Sometimes, however, the bacteria attach to the walls of the bladder and multiply quickly, overwhelming the body’s ability to destroy them, resulting in a bladder infection.

Simple, direct, and to the point. Here we are knowing what a bladder infection is, what the symptoms are, and how we might have developed one.  But, what do we do about it?

UTI OTC testFirst of all, verify that you have UTI or urinary tract infection since the kidneys, the urethra, and the bladder are part of this system. OTC or over the counter test strips for this purpose are available, although I seem to remember they are not effective if you’ve passed menopause.  That was seven years ago when I had my first and last bladder infection, so things may have changed.  You can also make an appointment with your doctor to verify. Usually, a high white blood cell count will indicate you’re fighting some sort of infection.

All right, let’s say you home test and see you’re fighting an infection. Now what? Well, you can try the usual home remedies of cranberry juice and uber hydration, but you have CKD.  You have to act fast before a UTI becomes a bladder infection which may lead to a kidney infection.

My advice?  Call your doctor.  He or she may prescribe an antibiotic which will hopefully clear up the infection in just a few days.  A bladder infection does not have to lead to a kidney infection or be serious… unless you ignore it.

I have spent every day of the last eight years working diligently to protect my kidneys, slow down the progress of Chronic Kidney Disease, and raise GFRmy GFR when I can.  I, for one, am not willing to jeopardize my kidney function because I didn’t jump on what I thought might be a UTI.  Won’t you join me in taking immediate action should you have the symptoms?  Remember the connections between the urethra, the bladder, and the kidneys.

Until next week,

Keep living your life!

Sailing, Naturally

Wow!  I just spent the past three days at a Landmark Wisdom Unlimited course and discovered that my already terrific life is even more than terrific than I thought. The theme was loosely, “What do you like about your life?” I was one of those that just kept going and growing my list again and again. Sharing Chronic Kidney Disease awareness was high on that list.

Talking about sharing, I casually mentioned to my daughter Nima – researcher par excellence – that I was looking for information about natural Nimapreventatives and/or cures for sea sickness.  Most of today’s research came from her immediately jumping on my comment.  Then I casually mentioned to her that she might consider a job as a writer’s research assistant.  She’s a talented person in many areas (I guarantee you this is not just mother pride), and this is one of them.

Bear and I are still about six weeks out from my very first cruise.  I’ve managed all the business, such as the tickets, the land excursions, the hotels for before and after, etc. What I’m still working on is the cautions about motion sickness made by my sister-in-law – Judy Peck. Last week I wrote about over the counter medical solutions and their relationship to CKD.  This week, we go the natural path.IMG_0959 (1)

That said (written), I must caution you in my turn.  Natural aids have neither been tested nor approved by the Federal Drug Administration.  Even if you’re not in favor of the FDA, remember that dosages and timing of natural aids have not been tested either.  Also, see page 87 of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

In other words, if anything in today’s blog catches your interest, please check with your nephrologist before you even think of taking whatever the product is.  I am not a doctor, have never claimed to be one, and want you to understand that you and your nephrologist are the final arbitrators of what is safe for your kidneys and what is not.

Ready?  Here we go. First off, we have WebMD at http://www.webmd.com/a-to-z-guides/acupressure-bands-for-motion-sickness-topic-overview. This is the one that caught my eye right away.

These bands use pressure, electricity, or both to stimulate the P6 acupuncture point. This point is located about two finger-widths from the crease on the underside of the wrist. The elastic bands usually have a raised surface that applies pressure on the wrist. Practitioners of acupuncture and acupressure believe stimulation of this point may stop nausea and vomiting.Adult Pack

Reminder: this is not an endorsement of this particular brand, simply a representation of what the band looks like and how it’s used.

Neither side effects nor effectiveness have been proven, so I’m wondering how I can test this before we cruise.  In New York, I would have jumped on the Staten Island ferry.  Wait, I never got seasick on the ferry, so that wouldn’t work.  Hmmm, I didn’t get seasick on the cruises around Manhattan Island either.

Maybe I’m one of those people who just doesn’t get seasick. But just in case you are, I’ll write about what else Nima found for us.

Many thanks to both my daughter for finding this and the HerbalShop.com at http://herbalshop.com/Acupressure/Acupressure_12.html for these

charts showing the acupressure points that can help.

Again, I don’t see how this can harm the kidneys, but I do urge you to talk with your nephrologist beforehand.  I found an equal number of articles in favor of and opposed to acupressure in the treatment of CKD, but none about using it for seasickness if you have CKD.  Interesting.

Now I’m wondering if this is my favorite natural seasickness aid. Of course, you can use a mixture of methods.  By the way, you don’t need to massage all these pressure points.  One or two may do the trick.

Nima also found an interesting (I think) article on yoga for seasickness on The Art of Living site at http://www.artofliving.org/in-en/yoga/health-and-wellness/yoga-for-motion-sickness. However, I have to admit my ignorance.  I understood very little of it since it mentioned positions a non-yogi – like me – would have to research and probably, more realistically, learn from a teacher – say as in a class.

The article didn’t mention CKD so I attempted to research yoga + chronic kidney disease + seasickness.  That didn’t work, so I kept rearranging the order of the search terms and still got no hits. I don’t see how yoga can hurt, other than sprains and strains if it’s all new to you, but I hesitate to say this is okay when I’m not your nephrologist.

Then there was this on Ask Dr. Mao at http://www.askdrmao.com/questions-and-answers/ginger-for-nausea/

Ginger has been used as food and medicine for millennia. Ginger’s modern use dates back to the early 1980s, when a scientist named D. Mowrey noticed that ginger-filled capsules reduced his nausea during an episode of flu. Subsequent research ultimately led to approve ginger being used as a treatment for indigestion and motion sickness.

Cup of Tea in MorningGinger is typically not as effective as standard drugs for motion sickness, but it has the advantage of not causing drowsiness. Some physicians recommend ginger over other motion sickness drugs for older individuals who are unusually sensitive to drowsiness or loss of balance.

However, the National Kidney Foundation does caution that ginger could interfere with your prescription medication.  While not specially aimed at the CKD population, this is the first I noticed any mention of “motion sickness drugs” and “loss of balance” in the same sentence. Odd that a medication aimed at relieving such symptoms can actually be a cause of one.

I have no intention of becoming seasick on our two cruises (the second in the Caribbean in September to celebrate said sister-in-law’s birthday and the 48th anniversary she will be sharing with my brother, Paul), but you know I’ll be bringing the acupressure chart and one of the seasickness bands with me… should my nephrologist concur.

Book Cover

I have a favor to ask: if you have read either of The Book of Blogs: Moderate Stage Chronic Kidney Disease, please write a review onDigital Cover Part 1 Amazon.com.  This is what one reader had to say in his review,

If you have kidney disease, like I do, you can relate to what Gail Rae-Garwood has written here… very useful…

Until next week,Part 2

Keep living your life!

On the Sea, On the Sea, On the Beautiful Sea

What a week!  All the aspects of the Phoenix Kidney Walk have been completed, although you can still donate to Team SlowItDownCKD at kidneywalk.kintera.org until May 31st.  No, this is not a solicitation, but rather information for those of you who had asked for it. 2015-04-18 22.02.52

I thought you might like to see some of the pictures so here they are sprinkled throughout today’s blog – with thanks to Keith Harris for being our impromptu (and talented) photographer. Most of the members of our team were too busy walking to stay still for photos, but they were there. That’s Keith Harris, Patti DuBois & me in the photo above.

This allowed me to slow it down a bit myself.  So much so that I started finalizing the plans for the cruise to Vancouver, B.C. and Alaska that’s my gift to Bear for our second anniversary. (Finally, our long awaited honeymoon!) One of the things my very-experienced-at-cruising sister-in-law, Judy Peck, told me about is anti-motion sickness medication.  And, of course, my first reaction was, “I’ll have to research that for Chronic Kidney Disease.”  The banner picture is of my daughter, Abby Wegerski, on the left and me on the right.

2015-04-18 22.09.45

First I went to the UK site ‘Patient’ at http://www.patient.co.uk/medicine/cyclizine-for-sickness for the definition of what is commonly known as sea sickness or, as the English call it, travel sickness. This site has the some of the most reader friendly explanations for medical issues.

Nerves situated inside your ear send messages to your brain with information about your movement. Along with messages from your eyes and muscles, these nerves help your body to maintain a good sense of balance. If the nerves in one of your ears send too many, too few, or wrong messages to your brain, it conflicts with the messages sent from your other ear, your eyes, or your body. Your brain then gets confused and this can cause dizziness and vertigo (a spinning sensation), and can make you feel sick.

Travel sickness is caused by repeated unusual movements during travelling. These repeated movements, such as going over bumps or around in a 2015-04-18 21.41.32  circle, send lots of messages to your brain. The balance mechanism in your ear sends different signals to those from your eyes, which  results in your brain receiving mixed and confusing messages. This is what causes you to feel sick.

That’s a picture of my young friend and pooper scooper/dog sitter, Willie Vlasity and Mr. Taco Bell.

Makes sense.  Now, what can we do about it? According to MedicineNet at     http://www.medicinenet.com/motion_sickness_sea_sickness_car_sickness/page3.htm,

Over-the-counter medications, and occasionally prescription medications, are used to relieve and in some cases prevent motion sickness. Some of the more common medications that can be used for motion sickness include:

Scopolamine (transdermal patches, Transderm-Scop)2015-04-18 21.08.28

dimenhydrinate (Dramamine)

meclizine (Antivert, Bonine, Meni-D, Antrizine)

promethazine (Phenergan, Phenadoz, Promethegan)

diphenhydramine (Benadryl)

cyclizine (Marezine)

Notice Patti made a new friend, too.

Wonderful, except that when I researched each of these on different sites, this is what I found. By the way, the bolding and italicizing are mine.

2015-04-18 21.39.40

Lara Garwood, my step-daughter, helped me show off our team t-shirts.

At MedlinePlus, A service of the U.S. National Library of Medicine from the National Institutes of Health National Institutes of Health (http://www.nlm.nih.gov/medlineplus/druginfo/meds/a682509.html),

Before using scopolamine patches… tell your doctor if you have or have ever had glaucoma; heart, liver, or kidney disease; stomach or intestinal obstruction; or difficulty urinating.

From Drugs.com at http://www.drugs.com/disease-interactions/dimenhydrinate,dramamine.html about dimenhydrinate, better known as Dramamine (including less drowsy),

Limited pharmacokinetic data are available for the older, first-generation antihistamines. Many appear to be primarily metabolized by the liver, and both parent drugs and metabolites are excreted in the urine. Patients with renal and/or liver disease may be at greater risk for adverse effects from antihistamines due to drug and metabolite accumulation. Therapy with antihistamines should be administered cautiously in such patients. Lower initial dosages may be appropriate.

On the contrary, MedicineNet.com at http://www.medicinenet.com/meclizine/index.htm does not list kidney disease at all for meclizine.  Although, there is a warning against alcohol use while using this medication.

2015-04-18 20.55.37

Isn’t that a wonderful entry to the National Kidney Foundation of Arizona Phoenix Kidney Walk?

Trying to use as many varied sources as possible, I went to WebMD at http://www.webmd.com/drugs/2/drug-8895/promethazine-oral/details for information on promethazine.

Before using this medication, tell your doctor or pharmacist your medical history, especially of: breathing problems (such as asthma, chronic obstructive pulmonary disease-COPD, sleep apnea), blood/immune system problems (such as bone marrow depression), high pressure in the eye (glaucoma), heart disease (such as irregular heartbeat), high blood pressure, liver disease, certain brain disorders (such as neuroleptic malignant syndrome, Reye’s syndrome, seizures), stomach/intestine problems (such as blockage, ulcer), overactive thyroid (hyperthyroidism), difficulty urinating (for example, due to enlarged prostate).

True, there is no warning against using promethazine if you have CKD, but how many of us who do also have sleep apnea and/or high blood pressure – the second most common cause of CKD.

Back to Medicinenet.com for the following about diphenhydramine at http://www.medicinenet.com/diphenhydramine/article.htm.

Diphenhydramine should be used with caution (if at all) in persons with narrow-angle glaucoma, prostatic hypertrophy (enlarged prostate gland), hyperthyroidism, cardiovascular disease, high blood pressure (hypertension), and asthma.

motion sickness

And what about cyclizine?  Everydayhealth.com at http://www.everydayhealth.com/drugs/cyclizine has no warnings about taking this if you have kidney disease.  There was one line in the how to take it section that just, plain cracked me up.  See if you get a good laugh out of this, too.

The chewable tablet must be chewed before you swallow it.

Let’s look into the two without any CKD warnings a bit more. Uh-oh, the British version of WebMD at http://drugs.webmd.boots.com/drugs/drug-137-Cyclizine.aspx tells us something different about cyclizine than the U.S. version of the same website.

Cyclizine should be used with caution in:

People with glaucoma (increased pressure in the eye)

People with obstructive disease of the stomach

People with liver disease

People with epilepsy (fits)

Males with prostatic hypertrophy (enlargement of prostate gland)

People with severe heart failure

People with decreased kidney functionncl

Pregnant women

Women breastfeeding

The elderly

As for meclizine, even the U.S. version of WebMD says emphatically “Consult your doctor.”

In all honesty, I wouldn’t take any medication without consulting my doctor – specifically my nephrologist.  I urge you to do the same.

Let’s say I was sufficiently spooked by today’s blog to not even want to try medication.  Is there something I could use to prevent sea sickness that’s not medication?  Of course, there is. Many people swear by these remedies, but that’s next week’s blog, folks.

Thank you so much for participating in the prize giveaways for each of the books.  As I saw each prize claimed, all I could think was, “Look how many people are going to share their awareness of Chronic Kidney Disease.”

Book Cover

Until next week,Part 2Digital Cover Part 1

Keep living your life!

Not Exactly

Before we start, I want to tell you I’ll be the guest on Online with Andrea tonight at http://www.blogtalkradio.com/onlinewith andrea/2015/03/23/chronic-kidney-disease in honor of National Kidney Month 7:30 EST.  This is a good opportunity to share aNational Kidney Monthwareness of our disease.

Kidney Book CoverYou may have friends, family, co-workers who are still not really sure what CKD is or why it’s important to be tested.  Here’s your chance to have someone else explain it for a change. I haven’t done a radio show in quite a while, but the timing was just too good to pass up this time around.

Now, what’s not exactly?  I’ve been thinking that knowing the definition of something is not the same as knowing whatever it is. {My English teacher senses are tingling right now.}  Specifically, I was thinking about pre-diabetes. We know that ‘pre’ is a prefix – talk about using a word, or in this case a part of a word, to define itself –a group of letters added before a word that changes its meaning. To further complicate this simple explanation, the prefix ‘pre’ means before. So pre-diabetes means before diabetes.

Wait a minute.  Aren’t we all pre-diabetes, or any other condition for that matter, before we actually develop it?  Well, yes.  Something is off here.  Ah, a synonym {The English teachers arises!  That’s a word that means the same as the word you can’t think of.  No, that’s a writer’s definition.  An English teacher will tell you they are words with the same meaning but different spellings and pronunciations.)

The synonym for pre-diabetes is borderline diabetes. That makes sense.  You’re just about there, but not quite.  That’s what my A1C results have blood glucosebeen saying for years.  Reminder: the A1C is the blood test that measures how well your body has been using your blood glucose for the past several months before you take the test.  Mine wasn’t doing so well.

We are CKD patients.  We know what diabetes can do to your kidneys and that diabetes is the number one cause of CKD. In case you’ve forgotten, this is from The National Kidney Foundation at https://www.kidney.org/atoz/content/diabetes for information.

With diabetes, the small blood vessels in the body are injured. When the blood vessels in the kidneys are injured, your kidneys cannot clean your blood properly. Your body will retain more water and salt than it should, which can result in weight gain and ankle swelling. You may have protein in your urine. Also, waste materials will build up in your blood.

bladderDiabetes also may cause damage to nerves in your body. This can cause difficulty in emptying your bladder. The pressure resulting from your full bladder can back up and injure the kidneys. Also, if urine remains in your bladder for a long time, you can develop an infection from the rapid growth of bacteria in urine that has a high sugar level.

I’ve repeated this from last week’s blog because you need to understand diabetes so you can understand the importance of not letting your body develop it.

Now borderline diabetes. While WebMD calls that the former name for pre-diabetes, it also talks about insulin resistance at http://www.webmd.com/diabetes/guide/insulin-resistance-syndromeinsulin resistance Insulin is a hormone that controls your blood sugar levels. If you have insulin resistance, your body doesn’t respond as well as it should to the insulin it makes. That leaves your blood sugar levels higher than they should be. As a result, your pancreas has to make more insulin to manage your blood sugar.

What I’ve discovered is that sometimes even that extra insulin produced by the pancreas isn’t enough. The first line of treatment for borderline or pre-diabetes according to the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 is

  • Eating healthy foods. Choose foods low in fat and calories and high in fiber. Focus on fruits, vegetables and whole grains. Strive for variety to help you achieve your goals without compromising taste or nutrition. This type of diet may be referred to as a Mediterranean-style diet.
  • Getting more physical activity. Aim for 30 to 60 minutes of moderate physical activity most days of the week. Try not to let more than two blues dancersdays go by without some exercise. Take a brisk daily walk. Ride your bike. Swim laps. If you can’t fit in a long workout, break it up into smaller sessions spread throughout the day. The American Diabetes Association also recommends resistance training, such as weightlifting, twice a week.
  • Losing excess pounds. If you’re overweight, losing just 5 to 10 percent of your body weight — only 10 to 20 pounds (4.5 to 9 kilograms) if you weigh 200 pounds (91 kilograms) — can reduce the risk of developing type 2 diabetes. To keep your weight in a healthy range, focus on permanent changes to your eating and exercise habits. Motivate yourself by remembering the benefits of losing weight, such as a healthier heart, more energy and improved self-esteem.

Book CoverPart 2

And then there are the folks like me. Despite a hard won nine pound weight loss, daily physical activity, and a renal healthy diet (Hey, I have Chronic Kidney Disease and have had it for the last seven years!), my body still is insulin resistant. That means medication.

I started out on 500 mg. Metformin daily.  This is controversial for kidney patients since there is a school of thought saying it can harm the kidneys.  That meant lots of discussion with my nephrologist, although my primary care doctor prescribed the drug.  The nephrologist felt that 500 mg. once a day would not harm the kidneys I’ve kept at stage 3 CKD since my diagnose.Metformin

What we hadn’t figured on was the stomach upset, nausea, and lightheadedness I’d feel.  I was at the point of immediately locating the waste paper baskets in any room I entered – just in case, you understand – when my PCP and I decided to halve the dose.  Things are still better as far as blood glucose and sort of getting there as far as the side effects.

This is all new to me.  As with anything else new, it’s foreign right now. But it’s important to me to protect that kidney function so I know I’ll figure out how to deal with the insulin resistance more effectively and soon.  Yet, I’m awfully thankful I also have nutritional counseling once a week for at least two months.

Until next week,Digital Cover Part 1

Keep living your life!