Decisions, Decisions

A reader asked me how I choose the articles or studies I include in the blogs. Now you’ve got to remember that researching and I go way back. I was fortunate in that Research Writing was my favorite course to teach before I retired as a community college instructor. I loved it.

I was going to give you my take on researching when I stumbled across Dr. Alicia White’s piece on the United Kingdom’s National Health Services site at https://www.nhs.uk/news/Pages/Howtoreadarticlesabouthealthandhealthcare.aspx. She’s already written what I would have, so I’m dedicating today’s blog to that. I have not reproduced all of it only because I don’t have the room in the blog for that. Oh, those are not typos; they’re the UK spelling. Take it away, Dr. White:

If you’ve just read a health-related headline that has caused you to spit out your morning coffee (“Coffee causes cancer” usually does the trick), it’s always best to follow the Blitz slogan: “Keep Calm and Carry On”. On reading further, you’ll often find the headline has left out something important, such as: “Injecting five rats with really highly concentrated coffee solution caused some changes in cells that might lead to tumours eventually (study funded by The Association of Tea Marketing).”

The most important rule to remember is: don’t automatically believe the headline. …, you need to analyse the article to see what it says about the research it is reporting on….

Does the article support its claims with scientific research?

Your first concern should be the research behind the news article. If an article touts a treatment or some aspect of your lifestyle that is supposed to prevent or cause a disease, but doesn’t give any information about the scientific research behind it, then treat it with a lot of caution. The same applies to research that has yet to be published.

Is the article based on a conference abstract?

Another area for caution is if the news article is based on a conference abstract. Research presented at conferences is often at a preliminary stage and usually hasn’t been scrutinised by experts in the field. Also, conference abstracts rarely provide full details about methods, making it difficult to judge how well the research was conducted. …

Was the research in humans?

Quite often, the “miracle cure” in the headline turns out to have only been tested on cells in the laboratory or on animals. … Studies in cells and animals are crucial first steps and should not be undervalued. However, many drugs that show promising results in cells in laboratories don’t work in animals, and many drugs that show promising results in animals don’t work in humans. If you read a headline about a drug or food “curing” rats, there is a chance it might cure humans in the future, but unfortunately a larger chance that it won’t…..

How many people did the research study include?

In general, the larger a study the more you can trust its results. Small studies may miss important differences because they lack statistical “power”, and are also more susceptible to finding things (including things that are wrong) purely by chance. … When it comes to sample sizes, bigger is usually better. So when you see a study conducted in a handful of people, treat it with caution.

Did the study have a control group?

…. If the question being asked is about whether a treatment or exposure has an effect or not, then the study needs to have a control group. A control group allows the researchers to compare what happens to people who have the treatment/exposure with what happens to people who don’t. …

Also, it’s important that the control group is as similar to the treated/exposed group as possible. The best way to achieve this is to randomly assign some people to be in the treated/exposed group and some people to be in the control group. This is what happens in a randomised controlled trial (RCT) and is why RCTs are considered the “gold standard” for testing the effects of treatments and exposures. … Without either, retain some healthy scepticism.

Did the study actually assess what’s in the headline?

…. For example, you might read a headline that claims: “Tomatoes reduce the risk of heart attacks.” What you need to look for is evidence that the study actually looked at heart attacks. You might instead see that the study found that tomatoes reduce blood pressure. This means that someone has extrapolated that tomatoes must also have some impact on heart attacks, as high blood pressure is a risk factor for heart attacks. Sometimes these extrapolations will prove to be true, but other times they won’t. Therefore if a news story is focusing on a health outcome that was not examined by the research, treat it with a pinch of salt.

Who paid for and conducted the study?

This is a somewhat cynical point, but one that’s worth making. The majority of trials today are funded by manufacturers of the product being tested – be it a drug, vitamin cream or foodstuff. This means they have a vested interest in the results of the trial, which can potentially affect what the researchers find and report in all sorts of conscious and unconscious ways. This is not to say that all manufacturer-sponsored trials are unreliable. Many are very good. However, it’s worth seeing who funded the study to sniff out a potential conflict of interest….

Many thanks to Dr. White for her explanations.

Here we are in the middle of madness, holiday madness that is. Of course, that means we need to remind ourselves to slow down and de-stress. Exercising is one way to de-stress. We all have different ways to do that. The important thing is to do it… and stick to your renal diet if you follow one.

To those of who you celebrate Chanukah, I wish you a happy and a healthy first night tomorrow night. We’ll be lighting the Menorah along with you. It’ll be hard not to eat the chocolate gelt (money), but you can do it.

Until next week,
Keep living your life!

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Movin’ On Up

Considering my family’s history, I’m vigilant about having colonoscopies. This year, however, there was an additional test – an endoscopy. You may have heard of this as an upper endoscopy, EGD or esophagogastroduodenoscopy. The names are interchangeable. Whatever you call it, I was intrigued.

What is an endoscopy, you ask. According to the Mayo Clinic at https://www.mayoclinic.org/tests-procedures/endoscopy/basics/why-its-done/PRC-20020363:

An upper endoscopy is used to diagnose and, sometimes, treat conditions that affect the upper part of your digestive system, including the esophagus, stomach and beginning of the small intestine (duodenum).

Okay, but that doesn’t explain what the procedure is. The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/diagnostic-tests/upper-gi-endoscopy can help us out here:

Upper GI endoscopy is a procedure in which a doctor uses an endoscope—a flexible tube with a camera—to see the lining of your upper GI tract. A gastroenterologist, surgeon, or other trained health care professional performs the procedure, most often while you receive light sedation to help you relax.

Relax? I was out like a light. First I was being shown was the device that was going to hold my mouth open and hold the tube that would be going down my throat, the next second I awoke in my room… or so it seemed.

Now the biggie: why have an endoscopy in the first place? I went to Patient Platform Limited at https://patient.info/health/gastroscopy-endoscopy and found this,

A gastroscopy may be advised if you have symptoms such as:

• Repeated (recurring) indigestion.
• Recurring heartburn.
• Pains in the upper tummy (abdomen).
• Repeatedly being sick (vomiting).
• Difficulty swallowing.
• Other symptoms thought to be coming from the upper gut.

The sort of conditions which can be confirmed (or ruled out) include:

• Inflammation of the gullet (oesophagus), called oesophagitis. The operator will see areas of redness on the lining of the oesophagus.
• Stomach and duodenal ulcers. An ulcer looks like a small, red crater on the inside lining of the stomach or on the first part of the gut (small intestine) known as the duodenum.
• Inflammation of the duodenum (duodenitis) and inflammation of the stomach (gastritis).
• Stomach and oesophageal cancer.
• Various other rare conditions.

Wait a minute. I can already hear you asking what that has to do with Chronic Kidney Disease. Claire J. Grant, from the Lilibeth Caberto Kidney Clinical Research Unit in London, Canada, and her colleagues’ answer was reported in PhysciansEndoscopy at http://www.endocenters.com/chronic-kidney-disease-adversely-affects-digestive-function/#.WiLwjrpFxaQ,

“CKD adversely affects digestive function,” the authors write. “Abnormalities in digestive secretion and absorption may potentially have a broad impact in the prevention and treatment of both CKD and its complications.”

Not good. We know that CKD requires close monitoring and life style changes. This may be another facet of the disease to which we need to pay attention.

I had some biopsies while I was under sedation. Nope, didn’t feel a thing.

But I now know I have gastritis and an irregular Z-line. The silver lining here is that I don’t have Helicobacter pylori or H. pylori, a type of bacteria that infects the stomach which can be caused by chronic gastritis. Mine seems to be the food caused kind. Generally it’s alcohol or caffeine, spicy foods, chocolate, or high fat foods that can cause this problem. I don’t drink, eat spicy or high fat foods, and rarely eat chocolate, but nooooooooooooooooo, please don’t take away those two luscious cups of coffee a day.

I wasn’t sure what this Z-line thing was so started poking around on the internet, since I didn’t catch it before seeing the gastroenterologist for my after visit appointment. Dr. Sidney Vinson, University of Arkansas for Medical Sciences/UAMS College of Medicine explained:

This refers to the appearance of the tissue where the esophagus and stomach meet. The z-line is a zig-zag line where these 2 different type tissues meet. Occasionally it can be irregular and protrude more into the esophagus and not have the typical appearance. This is generally a benign condition but can occasionally represent mild barrett’s esophagus, a precancerous change caused by reflux.

My source was HealthTap at https://www.healthtap.com/user_questions/198269-in-regards-to-upper-gi-endoscopy-what-is-an-irregular-z-line

Apparently my normal duodenum was biopsied to see if my doctor could find a reason for the pain I was experiencing in the upper stomach. Well, it was more discomfort than pain, but he wanted to be certain there wasn’t an ulcer… and there were no ulcers. Yay!

Hmmm, I have gastritis which is an inflammation and CKD, which is an inflammatory disease. Which came first? Did it matter? If I treat one will the other improve? I’ve been following the renal diet for all nine years since my diagnose and have made the appropriate life style changes, too.

What more could I do? There’s the ever present to struggle to lose weight. That could help. I wasn’t willing to take more medication as my gastroenterologist understood and accepted. I was already taking probiotics. I examined the little booklet produced by Patient Point that I was given more closely ignoring all the advertisements for medication.

Look at that. It seems sleeping on your left side can help. “Since your stomach curves to your left, part of it will be lower than your esophagus.” I can do that, although I wonder if it will be awkward while wearing the BiPap.

I also learned that skipping late night snacks and eating smaller meals would be helpful since there would be less acid produced by smaller meals and I wouldn’t have to deal with acid while I slept if I stopped eating at least two hours before bedtime. Acid is produced to help digest your food.

For Thanksgiving, I was part of a video produced by Antidote Me (the clinical trial matching program I wrote about several weeks ago). The topic was What I Am Thankful to Medical Research for. I think I can safely add endoscopy to that list. https://drive.google.com/file/d/1Mwv-vBRgzRFe8-Mg6Rs7uUIXMOgOMJHX/view

I was also invited to participate in two separate book signings and have a video from one of them. I’ll post it as soon as I can figure out how since I don’t own the rights yet. Oh, I feel a new year’s resolution coming on – learn more about the technology I need for my writing.

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!

Updated

 

 

 

You may have seen the pictures of the updates we’ve been making to our home on Facebook or Instagram. Now, it seemed to me that if I could update my home, I could update SlowItDownCKD’s social media. So I did. The website at www.gail-raegarwood.com is totally SlowItDownCKD now, as are the Instagram, LinkedIn, Twitter, and Pinterest accounts. Of course, the blog was next. I liked my updates, but realized some of the new organizations on the blogroll (the list to the right of the blog) may be unknown to you.

No problem. I’ll just introduce them to you. Allow me to make the introductions…

We’ll go alphabetically down the roll here. The American Association of Kidney Patients, The American Kidney Fund, and The American Society of Nephrology are not new. Just in case you need a reminder of what each is, I’ve linked their titles to the organization. Just click on one of them to go to their websites, as you usually do for any title on the blogroll.

This brings us to The International Federation of Kidney Foundations. This is directly from the young (established 1999) organization’s website:
The International Federation of Kidney Foundations leads the way in the prevention and treatment of kidney disease, through its Membership on all continents around the world. The Federation was formed to foster international collaboration and the exchange of ideas that will improve the health, well-being and quality of life of individuals with kidney disease. We hope to achieve this by advocating for improved health care delivery as well as adopting and disseminating standards of best practice of treatment and care. We facilitate education programs for member organisations, promote research, communicate with other organisations and exchange ideas, particularly those concerning fund raising….
The IFKF helps facilitate the establishment of more kidney foundations and to help existing foundations become more dynamic and effective. Worldwide, most individuals with chronic kidney disease or hypertension are not diagnosed until long after the illness has developed. Moreover, when they are diagnosed they are too often treated sub-optimally or not at all. In many parts of the world, once end stage kidney failure occurs, patients do not have access to dialysis or kidney transplantation.
IFKF members join together with ISN members and kidney patient associations, to celebrate World Kidney Day annually in March, to influence general physicians, primary healthcare providers, health officials and policymakers and to educate high risk patients and individuals.

I’ve been interested in the global effects of Chronic Kidney Disease since I started preparing for Landmark’s 2017 Conference for Global Transformation at which I presented this past May. Writing two articles for their journal opened my eyes- yet again – to the fact that this is not just a local problem, but a worldwide problem. That’s why I included Kidney Diseases Death Rate By Country, On a World Map in the blogroll. I mapped out the statistics I found here on a trifold map to exhibit at the conference. Seeing the numbers spread all over the world was startling, to say the least.

Here is their 2015 global CKD information:
In 2015, the Asian nations of India and China fared the worst when it came to the number of deaths due to this degenerative health condition per thousand people. According to the World Health Organization (WHO) data (I’m interrupting. Would you like a link to WHO on the blogroll?), India had the highest number of kidney diseases deaths. The data put the figure at an astounding 257.9 per 1,000 people. China had the second highest number of deaths due to kidney diseases. Here, the number stood at 187.4 per 1,000 people. Though not as bad as the two Asian nations, the United States was also grappling with the problem of kidney diseases deaths in 2015. The nation had 59.8 deaths (per 1,000 people) due to kidney diseases, while Indonesia, which occupied the fourth place, had an estimated 43 deaths (per 1,000 people) due to kidney diseases. Nations such as Egypt, Germany, Mexico, Philippines, Brazil, Thailand and Japan reported deaths between 20 and 40 (per 1,000 people) due to kidney-related diseases. But, on the positive side, there were many nations in the world where a negligible number of people died due to kidney diseases. It is a noteworthy fact that countries such as Maldives, Vanuatu, Iceland, Grenada, Comoros, Belize, and many others, reported a zero figure in 2015.

But then I wanted to cover more localized information about CKD, so I included The National Chronic Kidney Disease, Fact Sheet, 2017. This is basically facts with pictograms that make the information about the United States’ CKD information more visual and easier to grasp. The information is more distressing each year the site is updated.

Fast Stats

• 30 million people or 15% of US adults are estimated to have CKD.*

• 48% of those with severely reduced kidney function but not on dialysis are not aware of having CKD.

• Most (96%) people with kidney damage or mildly reduced kidney function are not aware of having CKD.

After several sites that are not new, the last new site, other than direct links to SlowItDownCKD’s kidney books, is The Kidney & Urology Foundation of America. Why did I include that? Take a look at their website. You’ll find this there:
The Kidney & Urology Foundation focuses on care and support of the patient, the concerns of those at risk, education for the community and medical professionals, methods of prevention, and improved treatment options.
What Sets Us Apart?
The Kidney & Urology Foundation of America is comprised of a dedicated Executive Board, medical advisors, educated staff and volunteers who provide individualized support to patients and their families. Adult nephrologists and transplant physicians comprise our Medical Advisory Board, Board – certified urologists serve on the Urology Board, and pediatric nephrologists and urologists represent the Council on Pediatric Nephrology and Urology.
We are a phone call or e-mail click away from getting you the help you need to cope with a new diagnosis, a resource for valuable information on kidney or urologic diseases, a window into current research treatment options or a link to a physician should you need one.

Are there any organizations I’ve left out that you feel should be included? Just add a comment and I’ll be glad to take a look at them. I am convinced that the only way we’re going to get any kind of handle on Chronic Kidney Disease as patients is by keeping each other updated.

Until next week,
Keep living your life!

The Other Side of the Coin

Here’s hoping everyone had a wonderful Father’s Day. During our relaxed celebration for Bear, I found myself ruminating about how many times we’ve celebrated this holiday for fathers no longer with us and how many more times  we would be able to celebrate it for the fathers who are. They are aging. Wait a minute, that means their kidneys are aging, too.

Yep, that meant a new blog topic. We already know that kidney function declines with age. According to the National Kidney Foundation at https://www.kidney.org/blog/ask-doctor/what-age-do-kidneys-decline-function, “The general ‘Rule of Thumb’ is that kidney function begins to decline at age 40 and declines at a rate of about 1% per year beyond age forty. Rates may differ in different individuals.” 40?

Well, what is a perfect kidney function score… if such exists? Back  to the NKF, although they call this a ‘normal’ not ‘perfect’ GFR, this time at https://www.kidney.org/atoz/content/gfr:

In adults, the normal GFR number is more than 90. GFR declines with age, even in people without kidney disease.
Average estimated GFR
20–29     116
30–39     107
40–49     99
50–59     93
60–69     85
70+         75

Got it. So even for a normal 70+ person, I have CKD with my 50ish GFR.

It seems I’m getting a bit ahead of myself here. I haven’t defined GFR yet. Let’s take a gander at What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for that definition,

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

No, that won’t do. I think we need more of an explanation. This is from 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 through  the glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.”

Okay, I think that’s clear now. However, that’s not what I wanted to know. This is – if kidney function already declines with age, does having CKD age us more quickly?

Premature aging is a process associated with a progressive accumulation of deleterious changes over time, an impairment of physiologic functions, and an increase in the risk of disease and death. Regardless of genetic background, aging can be accelerated by the lifestyle choices and environmental conditions to which our genes are exposed. Chronic kidney disease is a common condition that promotes cellular senescence and premature aging through toxic alterations in the internal milieu. This occurs through several mechanisms, including DNA and mitochondria damage, increased reactive oxygen species generation, persistent inflammation, stem cell exhaustion, phosphate toxicity, decreased klotho expression, and telomere attrition….”

You can read the entire fascinating (to my way of thinking) American Journal of Kidney Disease article at http://www.natap.org/2013/HIV/PIIS0272638612015922.pdf.

Nature.com at http://www.nature.com/nrneph/journal/v10/n12/full/nrneph.2014.185.html seems to agree that CKD accelerates aging:

“Chronic kidney disease (CKD) shares many phenotypic similarities with other chronic diseases, including heart failure, chronic obstructive pulmonary disease, HIV infection and rheumatoid arthritis. The most apparent similarity is premature ageing, involving accelerated vascular disease and muscle wasting. We propose that in addition to a sedentary lifestyle and psychosocial and socioeconomic determinants, four major disease-induced mechanisms underlie premature ageing in CKD: an increase in allostatic load, activation of the ‘stress resistance response’, activation of age-promoting mechanisms and impairment of anti-ageing pathways. The most effective current interventions to modulate premature ageing—treatment of the underlying disease, optimal nutrition, correction of the internal environment and exercise training—reduce systemic inflammation and oxidative stress and induce muscle anabolism. Deeper mechanistic insight into the phenomena of premature ageing as well as early diagnosis of CKD might improve the application and efficacy of these interventions and provide novel leads to combat muscle wasting and vascular impairment in chronic diseases.”

Remember the friend of my daughter’s who hadn’t seen me in five years who (thought) he whispered to her, “Your mom got so old.” Now I understand why, although I have noticed this myself. I look in the mirror and see the bags under my eyes that are not errant eye liner. I see the lines in my faces, especially around my mouth, that weren’t there just a year ago. I see the stubborn fat around my middle that frustrates me no end. I see that it takes me forever (okay, so I’m being figurative here, folks) to recover from the flu, and I see how easily I become – and stay – tired. The dancer in me screams, “No fair!” The adult patient in me says, “Deal with it,” so I do.

I’ve used quite a bit of advanced terminology today, but haven’t explained a great deal of it in the hopes that when you read these articles their meanings will become clear in context. If they don’t, please leave me a comment and I will explore each one of them in future blogs. Who knows? Maybe I’ll need to devote an entire blog to whichever term it is you’d like to know more about.

Don’t let our premature aging get you down. We can work against it and, hopefully, slow it down just as we do with the progress of the decline in our kidney function.

I have been saving this bit of news for the last item in today’s blog. The world is not going to suffer if it doesn’t know about my photography, my teaching ,writing, or acting careers. But, when it comes to CKD, my writing can add something for those 31 million people who have it…especially the 90% that haven’t been diagnosed yet. What I did was completely change my web site so that it deals only with my Chronic Kidney Disease Awareness Advocacy (It’s all caps because that’s the way I think of it.) under the umbrella of SlowItDownCKD. I have to admit, I was surprised to see how active I’ve been in the last decade. It’s different when you see your work listed all in one place. Take a look at www.gail-raegarwood.com and tell me what you think, would you?

Until next week,

Keep living your life!

 

 

The Three Musketeers

I was in Cuba last week with very sketchy internet, so it was not possible to post a blog. But for now, I was thinking about a friend – you know, one of those Facebook friends you pic_backbone_sidenever met but you feel an instant kinship with – who told me that her surgeon warned her that her recovery from the spinal fusion surgery she’d recently had would be slow because she has Chronic Kidney Disease.

CKD…bone healing. Let’s start slowly and work this one out.  First of all, what do the kidneys have to do with your bones?

I turned to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for some answers.

FullSizeRender (2)“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….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….Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones.”

Whoa! Each one of those thoughts needs at least a bit more explanation. Let’s start with the jobs of the kidneys. The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 has a paragraph that mentions some of them. I turned it into a list to make it more visual.

“Our kidneys are very busy organs, indeed.  They produce urine, remove potentially harmful waste products from the blood, aid in the maintenance of the local environment around the cells of the body, kidneys5

help to stimulate the production of red blood cells, regulate blood pressure, help regulate various substances in the blood {For example, potassium, sodium, calcium and more}, help to regulate the acidity of the blood, and regulate the amount of water in the body. Mind you, these are just their main jobs.”IMG_2982

Another of those various substances in the blood they help to regulate is phosphorous. That’s where one of the connections between CKD and your bones lies. If your phosphorous is not being correctly regulated by your kidneys (since your kidneys are impaired), yes you do experience pain and broken bones, but did you notice that your body also diverts your necessary-for-bone-health calcium to regulate the other substances in your blood?

I wanted to know more about phosphorous so I turned to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. I got a chuckle from seeing that I’d quoted from my first book in explaining how phosphorous works. I’d forgotten about that.

sparkling teeth“This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues…. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.”

FullSizeRender (3)

Talk about multi-tasking. Let’s focus in on the calcium/phosphorous connection. Kidney Health Australia at http://kidney.org.au/cms_uploads/docs/calcium-and-phosphate-balance-fact-sheet.pdf explained this succinctly:

“When your kidney function declines, you are unable to get rid of excess phosphate. (Me here: that’s what we call phosphorous except when dealing with inorganic chemistry.)  The phosphate builds up in your body and binds to calcium, which, in turn, lowers your calcium levels. When your calcium levels get too low, glands in bloodyour neck (called the parathyroid glands) pull the extra calcium your body needs out of your bones. This can make your bones easy to break. The bound phosphate and calcium get deposited in your blood vessels. It can increase your risk of heart disease and stroke. It can also cause skin ulcers and lumps in your joints.”

So where does vitamin D come in? As was mentioned in SlowItDownCKD 2015,

“’Vitamin D: Regulates calcium and phosphorous blood levels as well as promoting bone formation, among other tasks – affects the immune system.’ We know vitamin D can be a real problem for us.  How many of you are taking vitamin D supplements? Notice my hand is raised, too.  How many of you read the blogs about vitamin D?  Good!” IMG_2980

It sounds like vitamin D is in charge here. Let me get some more information about that for us. Bingo: DaVita at https://www.davita.com/kidney-disease/diet-and-nutrition/diet-basics/vitamin-d-and-chronic-kidney-disease/e/5326 was able to help us out here.

“Vitamin D is responsible for:

  • Building and maintaining strong bones
  • Keeping the right level of calcium and phosphorus in the blood
  • Preventing bones from becoming weak or malformed
  • Preventing rickets in children and osteomalacia in adults

vitamin d pillsToo much vitamin D can be toxic….”

Hmmm, the three work together with vitamin D as their captain.

I wondered what foods would be helpful for my friend in her healing process.

“Calcium

Milk, yogurt, cheese, sardines, spinach, collard greens, kale, soybeans, black-eyed peas, white beans and foods often fortified with calcium: breakfast cereals, orange juice, soy milk, rice milk

Vitamin D

Salmon, mackerel, sardines, tuna, flounder, sole, cod

Phosphorusfish

Ricotta cheese, barley, soybeans, sunflower seeds, cottage cheese, lentils”

Thank you to Weill Cornell Medical College’s Women’s Health Advisor at http://www.cornellwomenshealth.com/static_local/pdf/WHA0210_BoneHealth.pdf for the above information.

But, you know, it’s never just that easy. As CKD patients, we have limits of how much protein, potassium, sodium, and – wait for it – phosphorous we can eat each day. There is no socking in all the good stuff for kidney disease patients.

I can see why my friend’s surgeon told her the recovery might be slow. Something else that keeps the bones strong is weight bearing exercise, but how can she do that right now?

Until next week,

Keep living your life!

 

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!

What Are You Doing for Others?

Today is Martin Luther King’s birthday. Today, more than ever, we need to heed his message. Whether you apply it to today’s bizarre political scene, your local community, your family, your co-workers doesn’t matter. What matters is the operant word: doing.

mlk-do-for-others

That picture and those words got me to thinking.  What AM I doing for others? And what still needs to be done?

My commitment is to spread awareness of Chronic Kidney Disease (CKD). As a patient myself, I know how important this is. As you know, CKD is a costly, lethal disease if not caught early and treated… and it’s not just older folks – like me – who are at risk. One out of ten people worldwide has CKD, yet an overwhelming number of them are unaware they have it.

stages of CKDWe also know the disease can be treated, just not the way you’d usually expect a disease to be treated. A diet with restrictions on protein, potassium, phosphorous and sodium is 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 image saving the lives of all those who don’t know they have CKD by making them aware this disease exists. Powerful, isn’t it?

We’re all aware by now that 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. That’s where I come in; I tell people what can be done. I tell people how they can be diagnosed and treated, if necessary.IMG_2979

I was a private person before this CKD diagnosis so many years ago. Now, in addition to a Facebook page, LinkedIn, and twitter accounts as SlowItDownCKD, I make use of an Instagram account where I post an eye catching picture daily with the hashtag #SlowItDownCKD. This brings people to my weekly blog about CKD (the one you’re reading now) and the four books I wrote about it: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease (which explains CKD) and the others – 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 – which are the blogs in print for those who don’t have a computer or are not computer savvy.

Healthline is a well-respected, informative site for medical information. This past year this blog, SlowItDownCKD, was a winner in their list of The Six Best Kidney Disease Blogs. That brought the hits on my page up by the hundreds. That means hundreds more people are now aware of Chronic Kidney Disease, how it is diagnosed, how it is treated, and how to live with it.badge_kidney-disease-1

But not everything is working as I’d hoped it would. Unfortunately, I am still not having success in having Public Service Announcements placed on television or radio. Nor have I been able to interest most general magazines or newspapers in bringing the disease to the public’s awareness.

It hasn’t totally been a wipeout there, though. Michael Garcia did interview me on The Edge Podcast and both Nutrition Action Healthletter, Center for Science in the Public Interest (the nation’s largest-circulation nutrition newsletter) and New York State United Teachers (membership 600,000) ‘It’s What We Do’ profiled my work spreading CKD Awareness. Profiling my work, interviewing me, mentioning the blog all bring awareness of Chronic Kidney Disease to the public. Awareness leads to testing. Testing leads to diagnosing. Diagnosing leads to treatment. Treatment leads to saving lives. This is why I do what I can to spread awareness of Chronic Kidney Disease.

friendsWhat about you? Can you speak about CKD with your family? Your friends? Your co-workers? Your brothers and sisters in whichever religion you follow? What about your neighbors? I was surprised and delighted at the number of non CKD friends and neighbors who follow the blog. When I asked why they did, they responded, “I have a friend….” We may all have a friend who may have CKD, whether that friend has told us yet or not.

There are more formal methods of spreading this awareness if that interests you. The National Kidney Foundation has an Advocacy Network.

“A NKF Advocate is someone who has been affected by kidney disease, donation or transplant and who wants to empower and educate others. These include people NKF-logo_Hori_OBwith kidney disease, dialysis patients, transplant recipients, living donors, donor family members, caregivers, friends and family members.

Advocacy plays an integral role in our mission. You can make a significant difference in the lives of kidney patients by representing the National Kidney Foundation. We give you the tools you need to make your voice heard.”

You can read more about this program at https://www.kidney.org/node/17759 or you can call 1.800.622.9010 for more information.

The American Kidney Fund also has an advocacy program, but it’s a bit different.

“There is strength in numbers. More than 5,100 passionate patients, friends, loved ones and kidney care professionals in our Advocacy Network are making a huge AKF logodifference on Capitol Hill and in their own communities. Together, we are fighting for policies that improve care for patients, protect patients’ access to health insurance and increase funding for kidney research. As advocates, we play a key role in educating elected officials and our communities about the impact of kidney disease.”

You can register for this network online at http://www.kidneyfund.org/advocacy/advocate-for-kidney-patients/advocacy-network/

Obviously, I’m serious about doing that which will spread awareness of CKD. You can take a gander at my website, www.gail-raegarwood.com, to see if that sparks any ideas for you as to how you can start doing something about spreading awareness of CKD, too. I urge you to do whatever you can, wherever you can, and whenever you can.

Until next week,

Keep living your life!

 

Starting the New Year with a Miracle

fireworksHappy New Year and welcome to 2017.  We did our usual stay in, watch movies, and toast with non-alcoholic champagne (I know that’s contradictory.) at midnight.  With our New York daughter here, it was even more meaningful.

A new year brings to mind new beginnings… and that leads me to Part 3 of the miracle series, as promised. I am so, so serious about this and hope you decide to take on for yourself causing a miracle in CKD by sharing information.

I was thinking about social media the other day. Where are the public service announcements about Chronic Kidney Disease?  I am still – nine years after my diagnose – knocking on seemingly closed doors to encourage Public Service Announcements everywhere. While the public doesn’t seem as involved with network television or radio as they were when I was younger, we now have Twitter, Facebook, Instagram, LinkedIn, and Tumblr to name just a few ways we can share.

I use a both a Facebook page and a Twitter account to post one fact about or information pertinent to those with CKD daily. Join me at newslowitdownckdfbcoverSlowItDownCKD on Facebook and @SlowItDownCKD on Twitter. I also monitored Libre’s Tweet Chat with Gail Rae 1/10/12. I knew nothing about Twitter at the time, but it was a way to share the information I had. You may not want to do this, but feel free to ‘steal’ the information posted and share it with others.

There are also Podcasts, Internet Radio Shows, YouTubes, etc. to share what the public needs to know about CKD. A YouTube can be viewed by one person who posts it on Facebook and go viral. Don’t bother looking at mine. They’re pretty painful. I’ll look into this again at a later date.

On the other hand, these are some of the social media venues that interviewed me: The Edge

Podcast 5/9/16, Online with Andrea 3/23/15 & 3/07/12, What Is It? How Did I Get It? 2/17/12, and Improve Your Kidney Health with Dr. Rich Snyder, DO 11/21/11. I never knew these venues existed before I started working towards the miracle I wanted to cause.

Lo and behold, my sharing brought others who wanted to know about CKD, so I was profiled by Nutrition Action Healthletter, Center for Science in the Public Interest 9/16, New York State United Teachers ‘It’s What We Do’  8/9/16, and Wall Street Journal ‘Health Matters’  1/13/14. Remember that Clairol commercial in last week’s blog?

Let’s say you agree that sharing can cause a miracle in Chronic Kidney Disease and want to join in living a life causing this miracle. The first thing you’d want to do is learn about CKD. The American Kidney Fund and the National Kidney Foundation both have a wealth of information written AKF logofor the lay person, not the medical community. By the way, the National Kidney Foundation also has information about NKF-logo_Hori_OBCKD globally. Maybe you’d rather join in World Kidney Day gatherings and distribute materials. Then keep an eye on World Kidney Day’s Twitter account for locations around the world.

As you can see, I’ve been creating this miracle is by writing for these organizations and more kidney specific ones, as well as guest blogging for various groups. You may not choose to do that… but you can speak at your religious group meetings, your sports league, your weekly card game, or whatever other group you’re comfortable with.

A miracle doesn’t have to be profound. You can help create this one. All you need is a little education about CKD and the willingness to introduce the subject where you haven’t before.friends

I live my life expecting miracles and I find they happen.  This miracle that I’m causing – and is happening – has been (and is) created by sharing, sharing, sharing. The more than 200 million people who have Chronic Kidney Disease need this information, to say nothing of those who have yet to be diagnosed.

kidneys5There aren’t that many organs to go around for those who didn’t know they had CKD and progressed to End Stage Renal Disease.  We know that transplantation is a treatment, not a cure, and one that doesn’t always last forever. We also know that kidneys from living donors usually last longer than those from cadaver donors. Share that, too.

We have our no cost, no pain, no tools needed miracle right on our lips… or at our fingertips. Start sharing, keep sharing, urge others to share, and help to prevent or slow down the progression in the decline of kidneys worldwide. Sharing is causing a miracle in CKD. Both deaths and hospitalizations for this disease have declined since 2008. If that isn’t a miracle, I don’t know what is. I keep saying I live my life expecting miracles; this is one of them.hearing

I was a private person before this disease. Now, in addition to the Facebook page and twitter accounts, I make use of an Instagram account (SlowItDownCKD) where I post an eye catching picture daily with the hash tag #SlowItDownCKD. This brings people to my weekly blog about CKD – as does my Instagram account as Gail Rae-Garwood – and the four books I wrote about it: one explaining it and the others the blogs in print – rather than electronic form for those who don’t have a computer or are not computer savvy. Time consuming? Oh yes, but if I expect to live a life of miracles, I need to contribute that time to share what I can about the disease and urge others to do the same.IMG_2979

I am urging you to realize you are the others I am asking to help cause a miracle in Chronic Kidney Disease. As the Rabbinic sage Hillel the Elder said, “If I am not for myself, who will be for me? If I am only for myself, what am I? If not now, when?” Now. You. Me. Others. CKD.

Until next week,

Keep living your life!

Miracles Redux

Welcome to the last blog of 2016. I find it hard to believe another year has passed, although I do acknowledge that I’m a bit slower and more new-years-eve-celebrations-live-streamcontent to stay in my office to write rather than run around town. It’s a bit harder to maintain my body, although my mind is doing fine… as long as I don’t have to remember too much at once, that is. Well, my knees may have something to say, but I try to keep them happy with daily exercise and the braces.knee brace

I sincerely hope you enjoyed a joyous Christmas if you celebrate. And that you continue to enjoy Chanukah and Kwanzaa (which starts today) if you celebrate. We’ll be leaving for the Trans-Siberian Orchestra concert as soon as I finish the blog… a gift from us to us and one of the kids for Christmas. On Wednesday, we’ll have our Annual Chanukah Gathering. Our New York daughter will be with us since her Chanukah gift is a plane ticket. Being a two religion family, we celebrate both Chanukah and Christmas.

Before I get to more about creating a miracle, I am proud to announce that Healthline, a trusted health information site,  has named SlowItDownCKD one of The Best Kidney healthlineDisease Blogs of 2016. Talk about being surprised… and honored. Sort of a nice Christmas present, don’t you think? I suppose I can consider the publication of my novel, Portal in Time, my Chanukah present. I didn’t do too shabbily this year.

You know, it’s never too late to give either the novel or one of my Chronic Kidney Disease books as a present. Don’t forget you deserve presents, too.

Okay, on to more about miracles – or Part 2 – as I promised last week.

Unhealthy%20KidneyIf CKD were common knowledge, if those in high risk categories were aware of it, we might have a chance of preventing the disease in those who don’t have it yet and/or slowing down the progression of the decline in kidney function of those who have been already diagnosed.

Exactly how can we do that? On the most basic level, there’s the spoken word. It’s not just the medical community that can talk about the disease. I can as a patient. You can, too, because you know me and I’ve told you about the disease (and/or you suffer from CKD yourself).  This is most effective in areas of the world that do not have access to – or money for – doctors and treatment.  This is where we can prevent more and more of the disease by preventing more and more hypertension and diabetes.

If I tell you what I know about curtailing sodium intake in high blood pressure and you tell me what you know about smoking as it contributes to hypertension, we’ve just shared two important aspects in the prevention of high blood pressure. If I tell you what I know about sugar in diabetes Healthy%20Kidneyand you tell me what you know about carbohydrates and diabetes, we’ve just shared two important aspects in the prevention of diabetes. Then my husband starts sharing what he knows… and your third cousin once removed shares with her East Indian neighbor what her nephrologist told her… and your boss’s secretary shares what his boyfriend learned at his CKD awareness meeting, you’ve got a lot more people aware of what needs to be done about CKD. Sometimes causing a miracle is played out by sharing with people. Think of the miracle this kind of communication on a daily basis can cause.

The people you speak to will share with those they know, those they know will share with others they know until many, many hairmore people become aware of CKD – just as that long ago Clairol hair coloring ad demonstrated how telling someone who tells someone can go on ad infinitum. Simplistic? Yes, but it works…and that’s part of living the life of causing a miracle in CKD.

Then there’s the printed word. If people are aware of CKD books and newspapers, business and educational publications can alert their populations that the disease exists and is lethal, but may be prevented and/or slowed down. Most businesses have wellness components. What perfect vehicles to transform the world’s awareness of CKD.IMG_2979

For example: my four Chronic Kidney Disease books are sold in 106 countries. I have 107,000 readers. This in itself is a miracle, not just for me but for everyone who is in some way connected to the disease. It is not uncommon for one community member to buy the book, then share it with everyone else in their social circle. If there’s a library, the books can be ordered and then shared for free.

These are some of the pieces I’ve written: American Kidney Fund   “Slowing Down CKD –  It Can Be Done”  7/14/16, Dear Annie 10/14, KidneySteps  9/11/13  &  7/4/12, National Kidney Foundation 6/6/13, It Is What It Is 3/9/12, Kevinmd.com 1/1/12, Working with Chronic Illness 1/11/10, KidneyTimes 1/11/10. Bragging? No, just demonstrating it can be done… but I had to cause it to happen by knocking on doors.

I also share my information via this blog. A doctor in a remote village in India prints and translates it to share with whichever patient has the bus fare to make it to the clinic. That patient brings the translation back to his family, friends, neighbors, and whoever else he thinks may be interested. blood drawThis nephrologist’s view is the same as mine: We both need to live a life causing a miracle in Chronic Kidney Disease Awareness by sharing information. People who may not have known Chronic Kidney Disease exists now know via this sharing. Others who have undergone the simple blood and urine tests to diagnose the illness can share that the tests are not painful, other than the initial pinch of the needle for the blood draw. You would be surprised how many people, even in the high risk groups, don’t take the tests because they fear there will be pain involved. No sharing, no awareness. No awareness, no diagnose. No diagnose, no slowing down the disease.

Here are some of the blog and book mentions that have helped in my sharing of the information: Federal Register 9/25/13, The Neuropathy Doctor’s News 9/23/13, The NephCure Foundation 8/21/11, World’s Leading Expert.com 9/11/12, Glendale Community College Gaucho Gazette 8/22/11. These came about without my intervention. So what you share gets shared by others….

I’ve got some more thoughts, but we’ll have to leave them for Part 3 in the New Year. This blog is getting too long and my family is waiting for me.  Happy New Year to each and every one of you. Please be safe if you’re going out to celebrate.

Until next week and the New Year,

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!

Cleaning Out

Today I gimg_3613et to finish the final edits for my novel Portal in Time and submit it to my publisher. That means the next step is cleaning out my files and my computer. Writers accumulate an awful lot of unnecessary material when researching for a book.

That simple thought got me to thinking about another kind of cleaning out, the body kind. By the way, it seems the words cleanse and detox – short for detoxification – are being used interchangeably. Whichever term we use, are they safe for us as Chronic Kidney Disease patients?

But first – there’s always a first, isn’t there? – a warning: if you’re thinking of doing one for weight loss, don’t. According to Medicine.Net at http://www.medicinenet.com/cleansing_and_detox_diets/article.htm,

“There is no scientific evidence that “detox” (short for detoxification) or “cleanse” diets result in rapid weight loss or have any health benefits, says Heather Mangieri, RDN, LDN, a spokeswoman for the Academy of Nutrition and Dietetics and founder of NutritionCheckUp in Pittsburgh.

Indeed, the opposite may be true: One study published in 2011 in the journal Obesity found that beginning a weight-loss diet with a fast or cleanse could be counterproductive.”IMG_2980

Now wait just a minute, if they provide no ‘rapid weight loss or have any health benefits,’ why do people go to the trouble of doing them? I wrote about this just a bit in relation to brain fog in SlowItDownCKD 2015.

“…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.”

Ah, so there MAY be some benefits in relation to brain fog. What’s brain fog again? The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 (I have got to get around to shortening that title.) can help us out here.

“According to integrative medicine expert Dr. Isaac Eliaz, when experiencing brain fog

FullSizeRender (3)‘…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.”

Well, what exactly is a detox?  The Free Dictionary’s medical dictionary at http://medical-dictionary.thefreedictionary.com/detoxification offers this as one of its definitions:

“A short-term health regimen involving procedures thought to remove toxins from the body, such as drinking large amounts of liquid, eating a restricted diet or fasting, taking nutritional supplements, and undergoing enemas.”

Now we get to the meat of the matter. Why do Chronic Kidney Disease patients need to be so careful about cleanses? I looked at the ingredient list of several different cleanses on Amazon.com.  (Click on the ingredient lists to make them larger so you can read them more carefully.) The first product was Super Colon Cleanse. One of the first ingredients was Psyllium Husk Powder 1 g. Uh-oh. Not good for us. As Metamucil Advisor – the manufacturer of fiber products -at http://www.metamuciladvisor.com/avoid-psyllium-and-metamucil-in-kidney-disease/ explains,

“Psyllium husk is a natural fiber that comes from the plant called Plantago Ovata. Plantago Ovata produces thousands of seeds that are coated with cleansea gel like substance that is extracted to create psyllium husk. The psyllium husk is a natural soluble fiber laxative that can be consumed to add bulk to the feces. Consuming psyllium powder will draw water to the stool making it easier to have a bowl movement. Psyllium husk is recommended to not be taken by individuals who have kidney disease because it is high in magnesium that individuals with chronic kidney disease must avoid. It is highly recommended to consult your physician before starting any product of psyllium husk to make sure it is safe with any health conditions you might have.”

dr-tobiasWell, that’s only one cleanse.  Let’s take a look at another. Dr. Tobias Colon: 14 Day Quick Cleanse is composed of herbs, no psyllium. But there’s a problem there, too.  As Chronic Kidney Disease patients we are cautioned against taking herbs, not so much because they will cause damage, but because we don’t know how much of each is safe for our kidneys.

I thought I remembered writing about this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease  – another really long title – and decided to find that information. Here it is:FullSizeRender (2)

“While none of this is established, the following might be toxic to the kidneys -wormwood, periwinkle, sassafras (I remember drinking sassafras tea as a child.  Did that have any effect on my kidneys?) and horse chestnut just to name a few. Then there are the herbal supplements that might be harmful to CKD patients: alfalfa, aloe, bayberry, capsicum, dandelion, ginger, ginseng, licorice, rhubarb and senna.  There are others, but they seemed too esoteric to include….”

They say three is the magic number, so let’s take another look. This time as something label ‘detox.’  Baetea 14 Day Teatox is the one I chose. I think I liked the play on words: detox, teatox, a tea to detox. Lots of herbs, but then I looked at the last ingredient – Garcinia Cambogia. That rang a caution bell in my mind so I went right to a site about the side effects of this product at http://garciniacambogiatopic.com/side-effects-garcinia-cambogia/.

“Our kidneys and liver remove toxins, waste and other substances from our body.  They are the main organs designed to clean the body of detox-teaimpurities.   People who already have diseases of the kidneys or liver should not take Garcinia Cambogia because their bodies might not be able to utilize and remove the supplement effectively.”

*sigh* It looks like we’ll just have to detox the old fashioned way, with increased fiber, as much water as your nephrologist permits, and exercise. You might consider going meat and sugarless, too. Of course, it wouldn’t hurt to cut down on carbs, either. It looks like we, as Chronic Kidney Disease patients, are moving closer and closer to clean eating.

Until next week,

Keep living your life!IMG_2982

And I Shall Dance the Night Away

Once upon a time, there was a little girl who loved to dance. Her parents were ballroom dancers: smooth, gliding, and delightful to watch. She ballroomwanted to do that, too, but there were no ballroom lessons for little girls at that time. She took a tap lesson or two, but the dance school was too far away for her to walk or for her driving shy mother to drive.

Then there was nothing until her junior high school offered dance lessons during the physical education period, all kinds of dance: square, cha-cha, rhumba, mambo, salsa, waltz, foxtrot. That’s when she realized her parents were her best dance teachers… and that dancing was in her blood. When she hit college, she went dancing with her buddies every chance she got. At that time, it was clubs.

Eventually she married, had a family, and only danced at weddings. It wasn’t such a happy time for her. But her children grew older and she found she could bring them to swing dances with her. She was happy again. One of these children grew up to initiate and teach blues dance lessons every week.  She was ecstatic.

That group is Sustainable Blues, Phoenix, and that child is Abby Wegerski. The little dancer grown up? It’s me, as if you hadn’t guess by now. And here’s comes the reason for the dancing introduction to this week’s blog.

We have Chronic Kidney Disease; we need to exercise at least half an hour a day for five days a week, daily if possible. This little tidbit from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease explains why:What is it

“I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger.”

I went into this just a bit further in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1:

“With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your IMG_2982other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.”

Okay. Got it. Now the biggie: Is dancing the exercise we think it is?  I turned to WebMD at http://www.webmd.com/fitness-exercise/features/dancing-your-way-to-better-health#2 for the following:

(Exercise physiologist Catherine Cram, MS, of Comprehensive Fitness Consulting in Middleton, Wis. is the one being quoted.)

“Once someone gets to the point where they’re getting their heart rate up, they’re actually getting a terrific workout….Dance is a weight-bearing activity, which builds bones. It’s also wonderful for your upper body and strength, says Cram.”

Weight-bearing? I wasn’t so sure I could accept that so I turned to the National Institute of Arthritis and Musculoskeletal and Skin Diseases at http://www.niams.nih.gov/health_info/bone/Bone_Health/Exercise/default.asp for verification.

“The best exercise for your bones is the weight-bearing kind, which forces you to work against gravity. Some examples of weight-bearing exercises include weight training, walking, hiking, jogging, climbing stairs, tennis, and dancing.”

Look at that last word. Finally! My weight is working for me, instead of against me. Of course, I am in no way suggesting you gain weight so you can get more of the weight-bearing benefits of dancing. You know that, don’t you? Don’t you????

But that’s not the only benefit of dancing as a weight-bearing exercise. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, FullSizeRender (3)Part 2 I included part of a Los Angeles Times article about weight-bearing exercise. Potteiger is Jeffrey Potteiger, an exercise physiologist at Grand Valley State University in Grand Rapids, Mich., and a fellow of the American College of Sports Medicine.

“’Another big advantage … is improving glucose metabolism, which can reduce the risk of diabetes. Strength training boosts the number of proteins that take glucose out of the blood and transport it into the skeletal muscle, giving the muscles more energy and lowering overall blood-glucose levels.If you have uncontrolled glucose levels,’ Potteiger said, ‘that can lead to kidney damage, damage to the circulatory system and loss of eyesight.’”

I found the following list on the website of  Australia’s Victoria State Government Better Health Channel at https://www.betterhealth.vic.gov.au/health/healthyliving/dance-health-benefits after a bit of digging and liked how succinctly it demonstrated just how much we benefit ourselves when we dance.

 Health benefits of dancing

Dancing can be a way to stay fit for people of all ages, shapes and sizes. It has a wide range of physical and mental benefits including:

  • improved condition of your heart and lungs
  • increased muscular strength, endurance and motor fitness
  • increased aerobic fitness
  • improved muscle tone and strength
  • weight managementdepression-cause-heart-attack-1
  • stronger bones and reduced risk of osteoporosis
  • better coordination, agility and flexibility
  • improved balance and spatial awareness
  • increased physical confidence
  • improved mental functioning
  • improved general and psychological wellbeing
  • greater self-confidence and self-esteem
  • better social skills.

Wow – just wow. Who knew that the little girl who loved dancing would grow up to be the woman who used what she loved to help keep her Chronic Kidney Disease under control?

After all this good news – actually joyful to me – I unfortunately have to end this week’s blog on a cautionary note. It’s been brought to my IMG_2980attention that students are still being tricked into wasting their money by renting my Chronic Kidney Disease books for more than it would cost to buy them or asking their libraries to order copies to be borrowed for free . So, here’s the same warning I published earlier this year in SlowItDownCKD 2015.

“Students: do NOT rent any of these (e.g. my CKD books) for a semester.  The cost for that is much higher than buying the book.  Having been a college instructor, I know you sometimes have to buy your textbooks before the class begins and the instructor has the chance to tell you this.”

College has changed. It’s no longer two or three terms a year. Many college classes have staggered start dates, some weekly, some graduationmonthly. Many of the duped students used their financial aid money to pay these book rental companies. Be careful, students.

Until next week,

Keep living your life!

Is it CKD? Or Is It Arizona?

I’ve written about my dismay at thinning hair. By the way, I’ve come to terms with that rather than trying any product other than a new shampoo. What helped me come to that decision was a date day picture. My hair looked like straw in that picture and probably had for a while, although I hairhadn’t taken note of it.

It was dry, terribly dry. Well, I do live in Arizona. Our annual relative humidity index is about 31%. Thank you to Climatemps.com at http://www.phoenix.climatemps.com/humidity.php for this information.  For those of you (like me) who never thought about it before, I found the following excellent explanation of humidity at https://www.britannica.com/science/humidity.

“Care must be taken to distinguish between the relative humidity of the air and its moisture content or density, known as absolute humidity. The air masses above the tropical deserts such as the Sahara and Mexican deserts contain vast quantities of moisture as invisible water vapour. Because of the high temperatures, however, relative humidities are very low.”

sun-graphic1Hmmm, Mexican deserts…high temperatures… yep, that’s us. Wait a minute. My youngest and my step-daughters live here, too. They have beautiful, luxurious hair.  My delightful neighbor is a little older than my daughters, but her hair is always healthy looking and attractive. Okay, I’m older but I also have Chronic Kidney Disease.

Let’s take a look at what age can do to your hair first. (Saving the best for last, of course.) The Natural Society (I do occasionally check these sites.) at http://naturalsociety.com/2-factors-causing-thinning-hair-aging-not-one/ tells us:

“Low level of thyroid hormone can cause hair loss because it slows the metabolic rate throughout the body, a reason that low thyroid and weight gain often go hand in hand. This slowing extends to scalp follicles, resulting in premature release of the hair shaft and root, and a delay in producing replacement hairs. Early graying is another indication of low thyroid, as is the loss of hairs from the temporal edges of the eyebrows.”

Interesting, but it doesn’t talk about dryness, just hair loss… and my thyroid levels have always been fine.

Let’s try again. Prevention.com at http://www.prevention.com/beauty/anti-aging-care-thinning-brittle-hair  hit the nail on the head for me:

“But after you hit 40, the damage begins to go deeper, extending to the hair’s inner cuticle, known as the endocuticle.endocuticle

This type of damage is a result of the body’s reduced ability to repair itself, says Nicole Rogers, MD, assistant clinical professor of dermatology at Tulane University. In your 20s and 30s, the body (including your hair) bounces back from outside damage fairly quickly. But as you hit middle age, hair breaks down more quickly and the outer cuticle is repaired at a slower rate, leaving the inner cuticle vulnerable to the same outside attacks it once was shielded from.”

After you hit 40? That changed my entire outlook. At almost 70, I was actually lucky that I’d had so many years without dry hair. Amazing how information like this can reverse your thinking.

But I have CKD. Was this adding to the dry hair problem? I went to my old standby DaVita at https://www.davita.com/kidney-disease/overview/symptoms-and-diagnosis/hair,-nails-and-chronic-kidney-disease/e/4733 for help:

“… hair can become visibly abnormal when you develop a disease. Some people experience hair breakage or find that their hair falls out, or sometimes both.”

That tickled my memory. Oh, I remember writing this in What Is It and How Did I Get It? Early and Moderate Stage Chronic Kidney FullSizeRender (2)Disease.

“… oddly enough, my curly hair would become temporarily straight if I were incubating some illness or other…”

All right, that helps a bit, but – as usual – I wanted to know why. Another old favorite, WebMD at http://www.webmd.com/beauty/dry-hair-causes was helpful in a general, non-CKD, way:

“Your scalp isn’t making enough moisture. Hair has no natural lubrication. It relies on oils made in the hair root to keep your hair moisturized and looking lustrous.

Sometimes, hair doesn’t make enough oil, which leads to dry hair. (Likewise, roots in overdrive lead to oily and greasy hair.) As you age, your hair naturally makes less oil.”

Well, it looks like age, humidity, and disease – including Chronic Kidney Disease – all have something to do with dry hair. I sort of, kind of, remembered hydrating my hair with some home remedy when I was younger and had caused some damage by skiing in the sun or playing in a chlorinated swimming pool too much. Something about mayonnaise.  NaturallyCurley.com (How apt!) at http://www.naturallycurly.com/curlreading/products-ingredients/mayonnaise-hair-treatment-how-to/ explains:

“Mayonnaise does contain some hair healthy ingredients like lemon juice, vinegar and soybean oil which contain fatty acids and vitamins that can boost shine and act to seal in moisture.”

My method was ridiculously simple:

  1. Work the mayonnaise into your hair (It’s fun.).
  2. Plop on a shower cap.
  3. Leave it alone for about half an hour.
  4. Rinse out the by now gooey mess.
  5. Work at washing it out of your hair with a gentle shampoo.

I tried this last night and am very happy with the results. Maybe – in this case – it is just that easy.

I want to remind you that each of the websites I mention will give you more information about the particular topic you’re interested in.

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I had a really nice surprise the other day and wanted to share it with you. A little background is necessary first. I was a high school English teacher in New York City for 34 years before I retired and moved to Arizona. As such, I joined my union – The United Federation of Teachers. Because I did, I’m also a member of the New York State United Teachers. They publish a newspaper which has a section entitled ‘Kudos,’ that applauds the accomplishments of their members. As a retired teacher, I glance through the paper each time it arrives. This is what I found in the Fall 2016 issue:

 

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Thank you, thank you, thank you. These are non-Chronic Kidney Disease people appreciating writings about Chronic Kidney Disease.

Until next time,

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!

Not Quite the Bionic Woman

knee braceI have a knee brace.  The little sucker goes from mid-calf to mid-thigh… and it’s going to have a twin for the other knee.  I’m sort of disappointed because I thought it was going to be solely for when I exercise daily.  Only that’s not true; it’s going to be for eight hours a day. How did I so misunderstand what the doctor was saying?

More importantly, what the heck is this for?  I double checked this with the rheumotologist: it’s to postpone knee surgery as long as possible. As I understand it, there’s even a possibility of avoiding the surgery all together. I like that option. It’s also meant to minimize the pain. I like that, too.

The culprit here is osteoarthritis, which has worsened with age.  Lucky me. All those years of dance, judo, Tai Chi, Aikido, and stage movement blueshave done a job on my knees. That doesn’t mean I stop dancing or exercising, though. It also doesn’t mean I start taking more medications, either. Hey! I have Chronic Kidney Disease.

Let’s do our usual back tracking here. First question: What is osteoarthrosis of the knee? The American Academy of Orthopaedic Surgeons has a wonderfully clear explanation with an accompanying diagram:

“Osteoarthritis is the most common form of arthritis in the knee. It is a degenerative, ‘wear-and-tear’ type of arthritis that occurs most often in people 50 years of age and older, but may occur in younger people, too. In osteoarthritis, the cartilage in the knee joint gradually wears away. As the cartilage wears away, it becomes frayed and rough, and the protective space between the bones decreases. This can result in bone rubbing on anatomy of the kneebone, and produce painful bone spurs. Osteoarthritis develops slowly and the pain it causes worsens over time.”

You can read more about osteo and other types of knee arthritis on their site at http://orthoinfo.aaos.org/topic.cfm?topic=a00212.

Well, that explains why the knees clicking isn’t a source of amusement anymore and why getting on my knees to play with sweet Ms. Bella is now agony.

As for medications, sure NSAIDS will help… except I can’t take them. Here’s a reminder why not from What Is It and How Did I Get It? FullSizeRender (2)Early 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.”

I’ll pass on those. I do take Limbrel, though. That’s not a NSAID and does help with the pain of arthritis. In The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I defined Limbrel:

“a food medication {By prescription only} to deal with the pain preventatively.“

So now we understand why the knee braces (and the Limbrel). They – the braces – supposedly fit under your clothes. Uh, no, not if you’re a woman IMG_2982who wants to wear anything remotely stylish or not live in longish skirts. I could not get my capris or slacks on over the brace. Living in Arizona, longish skirts may work in the winter time, but they are too damned hot for the summer… which lasts from early May to late October.

So, how do these babies work you ask. I went over to the manufacturer’s website for the answer to that one.

“The Unloader One applies a gentle force design to reduce the pressure on the affected part of the knee, resulting in reduction in pain and thus allowing the patient to use the knee normally and more frequently.

Untreated, the cartilage will gradually wear down. The increased pressure on the underlying bone is the cause of the pain experienced by most osteoarthritis (OA) sufferers. The wear and tear on the cartilage will gradually cause the knee to become painful and feel stiff when moving.”

You can read more about knees on their website, but remember this is the site of a product for sale:  http://www.ossur.com/oa-solutions/unloader-uploaderbraces-and-osteoarthritis/knee-pain/unloader-braces-and-oa-knee-pain

I wanted to know a bit more about how the knee works. The National Institute of Health at http://www.niams.nih.gov/Health_Info/Knee_Problems/default.asp explained in detail.

Bones and Cartilage

The knee joint is the junction of three bones: the femur (thigh bone or upper leg bone), the tibia (shin bone or larger bone of the lower leg), and the patella (kneecap). …The ends of the three bones in the knee joint are covered with articular cartilage, a tough, elastic material that helps absorb shock and allows the knee joint to move smoothly. Separating the bones of the knee are pads of connective tissue called menisci (men-NISS-sky). …The two menisci in each knee act as shock absorbers, cushioning the lower part of the leg from the weight of the rest of the body as well as enhancing stability.

Muscles

There are two groups of muscles at the knee. The four quadriceps muscles on the front of the thigh work to straighten the knee from a bent position. The hamstring muscles, which run along the back of the thigh from the hip to just below the knee, help to bend the knee.

Tendons and Ligaments

The quadriceps tendon connects the quadriceps muscle to the patella and provides the power to straighten the knee. The following four ligaments connect the femur and tibia and give the joint strength and stability:

  • The medial collateral ligament, which runs along the inside of the knee joint, provides stability to the inner (medial) part of the knee.LateralKneeDia_cropped1
  • The lateral collateral ligament, which runs along the outside of the knee joint, provides stability to the outer (lateral) part of the knee.
  • The anterior cruciate ligament, in the center of the knee, limits rotation and the forward movement of the tibia.
  • The posterior cruciate ligament, also in the center of the knee, limits backward movement of the tibia.

The knee capsule is a protective, fiber-like structure that wraps around the knee joint. Inside the capsule, the joint is lined with a thin, soft tissue called synovium.”

CKD brings a new way of thinking about every part of your body… even your knees. Think about it.
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Until next week,

Keep living your life!

CKD Treatment Interruptus

Recently, someone close to me experienced a major burglary.  After calling the police, he called me. That’s what my friends do and I’m thankful they do. I kept him on the phone while I threw on some clothes and sped over to his house. This is a strong, independent man who was shocked at the intimacy of the invasion of his home. When I got there, we walked from room to room, astonished at how much had been stolen.

That night, I couldn’t leave – not even to go home for my evening medications and supplements. That night, I couldn’t sleep while my buddy was in such turmoil. So we sat up staring at the empty space where the TV had been.  He’s not on the renal diet and all he had that I could eat was some chicken, no fruit, no vegetables. And I was too busy being with him to exercise. This was my good buddy of over 30 years standing.

The next morning, another friend came over to help with security devices and spend time with our mutual friend.  I got to go home, take my morning medications, and crawl into bed for ½ an hour. But then our mutual friend had to go to work, so I went back to my buddy’s house and spent the day helping him try to list what was missing, what to do about the insurance, how to handle going to work, etc. The word spread, and, suddenly, a third friend was coming to spend the night with him and another couple joined them to make dinner.  I could go home again.    friends

But I was exhausted. I ate stupidly: Chinese restaurant food with all that sodium. I even ate rice, and here I am on a low carbohydrate diet. I sat in the living room like a zombie while Bear waited on me hand and foot.

Even with all this help, my buddy needed to see me daily. I was his strength. So we ran around rummaging up some receipts he’d need for the insurance. But I could see he was feeling better. Our mutual friends were amazing, including those who couldn’t leave work to come so kept phoning and texting instead. A different someone else stayed with him overnight again.  Then he only needed to see me for a quick hug… and yet another someone else stayed with him overnight again. He didn’t really need me anymore, which is great because I started breaking down.

sad faceI have Chronic Kidney Disease. I need to sleep adequately – and with my BiPap. I need to follow the renal diet. I need to exercise. I need to rest.  I did very little of any of this during the trauma itself, and that’s alright. This is my long term buddy – as grown up and mature as he is – and he needed me. But what did I do to myself?

You guessed it. Right away, my blood pressure shot up and that’s a bad thing. Why? Let me tell you… or you can go to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, page 9.  FullSizeRender (2)

“Through my research, I began to understand what high blood pressure [HPB] has to do with renal disease.  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.”

FullSizeRender (3)What about the stress?  What was that doing to my poor overworked kidneys?  I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 for the answer to that one:

“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 {Blood sugar} and hypertension {Blood pressure} both play a part in Chronic Kidney Disease.”

That’s two strikes against me. I almost hesitate to think about exercise… or the lack of it for several consecutive days.  This is one of the points about treating prediabetes (which I have and so do so many of you) from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/prediabetes/basics/treatment/con-20024420 which was included in SlowItDownCKD 2015:IMG_2980

“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.”

And the renal diet? We mustn’t forget about the renal diet. In The Book of Blogs: Moderate Kidney Disease, Part 1 I quoted from http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189 which is part of Yourkidneys.com from DaVita:

“Depending on what stage of Chronic Kidney Disease you’re in, your renal dietitian will adjust the amounts of protein, sodium, phosphorus and potassium in your diet. In addition, carbohydrates and fats may be controlled based on conditions such as diabetes and cardiovascular disease. The IMG_2982CKD non-dialysis diet includes calculated amounts of high quality protein. Damaged kidneys have a difficult time getting rid of protein waste products, so cutting back on non-essential protein will put less stress on your kidneys.”

Have I done more permanent damage to my kidneys? I’m hoping not since it was just a few days and I made the conscious decision to be with my buddy instead of tending to myself. Let’s consider this a cautionary tale instead.

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!

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!

Connected

dictionaryFull Definition of connected from the Merriam-Webster Dictionary

 1:  joined or linked together

2:  having the parts or elements logically linked together <presented a thoroughly connected view of the problem>

3:  related by blood or marriage

4:  having social, professional, or commercial relationships <a well-connected lawyer>

5: of a set:  having the property that any two of its points can be joined by a line completely contained in the set; also:  incapable of being separated into two or more closed disjoint subsets

Growing up in New York, I often heard the word used to suggest someone was associated with the Mafia.  You know, like you see in gangster movies. But, that’s not what today’s blog is about. It’s about the connection among all the chronic ailments you have. That would be the second definition.

Before we start, I need to remind you that I’m not a doctor and have never claimed to be one. This is my thinking from my research. This blog was sparked by a conversation on the Facebook page Stage 3 ‘n 4 CKD Kidneybeaners Gathering Place and Robin Rose who got me to thinking about the connection between CKD and inflammation. Maybe it will give you something to think about, too.

PubMed, part of the U.S. National Library of Medicine, National Institutes of Health at http://www.ncbi.nlm.nih.gov/pubmed/19083024 tells us:banner-nihlogo

“Inflammation is the response of the vasculature or tissues to various stimuli. An acute and chronic pro-inflammatory state exists in patients with chronic kidney disease (CKD), contributing substantially to morbidity and mortality. … Inflammation contributes to the progression of CKD by inducing the release of cytokines and the increased production and activity of adhesion molecules, which together contribute to T cell adhesion and migration into the interstitium, subsequently attracting pro-fibrotic factors. Inflammation in CKD also causes mortality from cardiovascular disease by contributing to the development of vascular calcifications and endothelial dysfunction. … “

In that one quotation, you have the definition of inflammation and its causes. I thought I’d try easing into this difficult explanation.

DIGITAL_BOOK_THUMBNAILIn The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1, I accepted the connection, but without thought:

“And to answer your question about what colon cancer has to do with Chronic Kidney Disease, you have to remember you are medically compromised already. Cancer is a disease caused by inflammation, just as Chronic Kidney Disease is.”

That’s two chronic diseases caused by inflammation: CKD and colon cancer. There are more, many more.

By the time I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, I was aware that sinusitis is another inflammatory disease.

“According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842:Digital Cover Part 2 redone - Copy

‘The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.’”

That’s three chronic diseases caused by inflammation: CKD, colon cancer, and sinusitis. But there are more, many more.

Last year, I wrote SlowItDownCKD 2015 and included this information:

“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)That’s four diseases caused by inflammation: CKD, colon cancer, sinusitis, and cystitis. But there are more, many more.

According to MedicineNet at http://www.medicinenet.com/psoriasis/article.htm :

“Psoriasis is a noncontagious skin condition that produces plaques of thickened, scaling skin. The dry flakes of skin scales are thought to result from the excessively rapid proliferation of skin cells triggered by inflammatory chemicals produced by specialized white blood cells called lymphocytes. Psoriasis commonly affects the skin of the elbows, knees, and scalp.”

That’s five diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, and psoriasis. But there are more, many more.

Let’s not forget rheumatoid arthritis. Arthritis.com at http://arthritis.com/rheumatoid_arthritis_symptoms tells us:

“Rheumatoid arthritis (RA) is an autoimmune disease where the body’s immune system attacks normal joint tissues, causing inflammation of the joint lining.

rheumThis inflammation of the joint lining (called the synovium) can cause pain, stiffness, swelling, warmth, and redness. The affected joint may also lose its shape, resulting in loss of normal movement. RA is an ongoing disease, with active periods of pain and inflammation, known as flares, alternating with periods of remission, when pain and inflammation disappear.”

That’s six diseases caused by inflammation: CKD, colon cancer, sinusitis, cystitis, psoriasis, and rheumatoid arthritis. But there are more, many more.

I wouldn’t lose hope even though inflammation seems to be the common thread in chronic disease, though. According to an article in last year’s Blood Purification Journal at https://www.karger.com/Article/FullText/368940 , simple lifestyle modifications can help with inflammation:

“Chronic inflammation should be regarded as a common comorbid condition in CKD and especially in dialysis patients. A number of interventions have been proven to be safe and effective in well-designed clinical studies. This includes such inexpensive approaches as modification of physical activity and dietary supplementation. “

For example:  Dr. Richard Synder, O.D.,  suggested an alkaline/anti-inflammatory based diet when he guest blogged.

If you know an expert in the field of Chronic Kidney Disease and inflammation, let me know who that is so I can contact them to ask if they’d like to guest blog for us.

I know you each have a great deal more to say about Chronic Kidney Disease and inflammation… and so do I, so before you protest that this isn’t all there is to the topic: you’re right, but one weekly blog can only go so far. Please feel free to comment about other inflammatory diseases and how they’re affecting your CKD. I only mentioned six of them.

Until next week,Book Cover

Keep living your life!

Maybe This One?

Hi y’all! I’m still deep in the heart of Texas and will tell you about it next week . My friend Beth, a fellow Landmark graduate and the originator Texasof the Facebook page Morning Gratitude, offers a product  I am eager to explore this week. She is excited about its health and weight loss benefits. This seems to be the national pastime these days, but I must say each person I’ve spoken with is delighted with the results of their products… but they don’t have Chronic Kidney Disease.

You might remember that last November I spent the month writing about different products. They sounded good, healthy, and I wondered if I could use them. The answer? No, no, no, and no. They were either way out of the guidelines for phosphorous, protein, potassium, and/or sodium on my renal diet or they were out of guidelines for the pre-diabetic diet I’ve incorporated with my renal diet.  That incorporation took me over a year to figure out so there was no way I was going to violate it. I have been having some success slowly losing weight and bringing my blood sugar in line by cutting out sugar and most complex starches, as well as continuing to exercise. (Yes, that’s a not at all veiled hint.)

Beth, a friend for three years is so happy with her brand – Plexus Worldwide – that she’s become a distributor. Similar to some of the other brands I explored for CKD patients in SlowItDownCKD 2015, Plexus Worldwide offers many different products. I took an in-depth look at the one that seemed to be the basic product: Plexus 96.

According to Beth’s Plexus website at http://shopmyplexus.com/bethbetcher/products/block.html, this particular product contains alpha lipoic acid, chlorogenic acid, garcina cambogia, whey protein, green lipped mussel, aloe vera, and grape seed extract. Stop. What is chlorogenic acid? Anyone? No one knows? Let’s find out together then.

Plexus96 VanillaThis ingredient is a miracle according to the internet. It supposedly helps you lose weight, is an antioxidant, cleanses the liver… shall I go on? I liked almost everything I read about it except that it is not yet approved by the Food and Drug Administration. I never used to care about that. Now I have CKD, so I do.  Why? If a supplement is not approved, there’s no way to know how to adjust the dosage for your (and my) poorly performing kidneys.

In addition, the UK Medicines Information (UKMi) pharmacists for NHS healthcare professionals published the following finding on April 8, 2013:

“Limited laboratory studies appear to suggest that chlorogenic acid can cause liver or kidney changes. Until more is known, it would be prudent to avoid GCE in patients with pre-existing liver or kidney disease.” *GCE is Green Coffee Extract, the source of chlorogenic acid.

Right out of the gate, this is not a product for people with CKD. I would go on, but I think it might be better to explore another of Plexus’s products. You know what they say, ‘One bad apple doesn’t spoil the bunch.’

I liked the sound of the Plexus Slim. When I looked at the ingredient list, the first thing I saw was chlorogenic acid. We know we can’t have this, but plexus slimlet’s look at one more ingredient just for the heck of it. Here’s one I often hear about: garcinia cambogia. I went directly to their website at http://garciniacambogia.org/garcinia-cambogia-side-effects/ to look for possible side effects. Uh-oh:

“Increases risk for rhabdomyolysis, a skeletal muscle disease that causes the muscles to release proteins into the bloodstream leading to kidney malfunction.”

Ladies and gentlemen, our protein intake is restricted because we have CKD. Why would we take a chance on increasing the protein in our bodies? What is itHere’s a reminder from What Is It and How Did I Get It? Early Stage Chronic Kidney Disease about why we need to limit our protein.

“So, why is protein limited? One reason is that it is the source of a great deal of phosphorus. Another is that a number of nephrons were already destroyed before you were even diagnosed. Logically, those that remain compensate for those that are no longer viable. The remaining nephrons are doing more work than they were meant to. Just like a car that is pushed too hard, there will be constant deterioration if you don’t stop pushing. The idea is to stop pushing your remaining nephrons to work even harder in an attempt to slow down the advancement of your CKD.  Restricting protein is a way to reduce the nephrons’ work.”

Beth did tell me she didn’t know if Plexus would be good for Chronic Kidney Disease patients. Okay, we’ll look at just one more product before we call it a day. The name drew me to the product and the ingredient silica turned me away again. I’m referring to Plexus X Factor which is described on the website in the following manner.

“Plexus X Factor is a turbocharged multivitamin and antioxidant supplement with a never-before-seen formulation of a patented aloe blend and New Zealand Blackcurrant of which results in vastly improved absorption and assimilation for optimal nutrition and wellness protection.”

Wait a minute. I remember having read something about silica. It wasn’t complimentary. Found it! It was listed under Side Effects and Precautions Label-XFactorof Silica Supplements along with a warning that this is not FDA approved. The address for the article is http://www.newhealthguide.org/Silica-Supplements.html.

“Kidney Function. Some medical teams have also expressed concerns that using silica supplements for a prolonged period of time may cause severe kidney trouble. People who take these supplements have reported kidney stones and medical professionals believe it may be because of a buildup of extra silica within the body as only small quantities are required for proper bodily functions. General kidney deterioration can also occur over time if there is excess silica in the body and this condition is irreversible.”

Are you getting the feeling that none of these new products for health improvement and/or weight are acceptable for CKD patients? I am and it has to do with the unregulated herbs that may cause or worsen kidney damage. What do you say we quit while we’re ahead? Of course, those without CKD need to decide for themselves if this is something they’d like to try.IMG_1398

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!

How Sweet It Was

I’ve had an interesting turn around in my health this last week of National Kidney Month. You did know it’s still National Kidney Month, right?  National Kidney MonthYou did go get yourself tested for Chronic Kidney Disease, didn’t you? Hurry up! There’re only four more days left to National Kidney Month. You know I’m joking about this month being the time to get yourself tested, but I’m serious (unfortunately, sometimes dead serious) about getting yourself tested.

I know, I know, I’m preaching to the choir. But how many of you have told your friends, neighbors, family, and co-workers about just how simple – and important – these tests are. Let’s not let them become one of the 31 million with Chronic Kidney Disease or worse, one of those that don’t know they have it.

Excuse me while I step off my soap opera. Now, where was I? Oh, yes, the – ahem – interesting turn around in my health this month.

Okay, this is twofold. The first part is the weight. You think I’ve been having trouble keeping that in check since I started blogging four years ago, don’t you? I mean because I write about it so much. The truth is it’s been much, much longer than that.  Even way back in college when I was a size 7 for one day, I weighed more than ‘the charts’ said I should by 20 pounds or so. I looked good, I felt good, and my mom kept telling me I had ‘heavy bones,’ so I let it go.  Who knew any better back then?sorry face

What’s so bad about the extra weight you ask? You do know obesity is one of the causes of CKD, don’t you? Don’t feel bad if you didn’t. I didn’t. I just started noticing it showing up in the research in the last couple of years. That doesn’t mean it wasn’t there. It just means I never saw it if it was.

I mentioned weight in passing a few times in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease. This is from my first nephrologist’s report:

“The report, of course, ended with a one – two punch: I would need to exercise for at least 30 minutes a day and possibly decrease food portions, so I could lose weight (all right already!  I got it!) for better blood pressure and renal function.”

What is itBetter blood pressure and renal function? That’s when my battle with the numbers became real. And that’s when weighing and measuring food according to the renal diet allotments worked for a while… until I thought I could eye measure. So I went back to weighing and measuring… and it worked…until bomb shell number two fell in my lap: pre-diabetes.

In The Book of Blogs: Moderate Chronic Kidney Disease, Part 1, The National Institutes of Health helped me explain why this combination of excess weight and pre-diabetes was a problem for CKD patients:

“High blood glucose and high blood pressure damage the kidneys’ filters. When the kidneys are damaged, proteins leak out of the kidneys into the urine. The urinary albumin test detects this loss of protein in the urine. Damaged kidneys do not do a good job of filtering out wastes and extra fluid. Wastes and fluid build up in your blood instead of leaving the body in urine.”DIGITAL_BOOK_THUMBNAIL

Let’s backtrack just a bit here. What does high blood glucose have to do with this? Well, that’s what tested to measure your A1C, which determines whether or not you have diabetes… or even pre-diabetes.

Back to The Book of Blogs: Moderate Chronic Kidney Disease, Part 2 this time, in which I decry my A1C woes:

“This time I went to WebMD for a simple explanation.  In addition to learning that pre diabetes means your glucose, while not diabetic, is higher than normal, I found this interesting statement.

Part 2When glucose builds up in the blood, it can damage the tiny blood vessels in the kidneys, heart, eyes, and nervous system.

What I learned from my primary care physician on my last visit is that the A1C is not the only measure of diabetes. Although my blood glucose readings are still in the pre-diabetes range according to the A1C, my daily readings have sometimes gone over the 126 that’s considered diabetes. My head is spinning here. No one ever mentioned that magic number to me before.

I decided to conduct a little experiment last night. We know that high blood glucose is the result of sugar, but did you know that most carbohydrates turn into sugar? Last night I ate a chocolate bar and devoured at least half a dozen Saltines. This morning, when I pricked my finger and tested the blood, the reading was 129. Damn! Someone had to be the guinea pig and I volunteered myself… but all I’d proven was that sugar and carbs raise your blood sugar pretty quickly.

Now here’s the kicker. This is from SlowItDownCKD 2015 which is presently available digitally and should be out in print later this week:

“The Brits do a masterful job of explaining this effectively.  The following is from Patient.SlowItDownCKD 2015 Book Cover (76x113)

‘A raised blood sugar (glucose) level that occurs in people with diabetes can cause a rise in the level of some chemicals within the kidney. These chemicals tend to make the glomeruli (Me here inserting my two cents: what filters the blood in your kidneys) more ‘leaky’ which then allows albumin to leak into the urine. In addition, the raised blood glucose level may cause some proteins in the glomeruli to link together. These ‘cross-linked’ proteins can trigger a localised scarring process. This scarring process in the glomeruli is called glomerulosclerosis. It usually takes several years for glomerulosclerosis to develop and it only happens in some people with diabetes.’”

My nephrologist told me to cut out sugar and carbs to lose weight. I’d already cut out sugar, so I cut out (or at least drastically down on) carbs. The black breadresult: a very slow weight loss. Of course, this is new to me so I don’t know if that two pound weight loss in a month will continue every month, but I’m willing to give it a try. Say, that’ll have a possible effect on eliminating the diabetes, too!

Until next week,

Keep living your life!

Clogged Up?

That’s a good question and one I received from a reader just recently. Only this time, it doesn’t have to do with your nose or chest during a cold or the flu, but rather with cholesterol in your blood vessels.

For some of us, this is basic information, but for others… well, let’s just say we never bothered to find out about our cholesterol. After all, our doctors were managing this for us, weren’t they?

Ehhh, not my way. I like to be fully informed about what’s happening inside my body where I can’t see it. Let’s make that ‘especially where I can’t see it.’

What is itLet’s start with the basics from What Is It and How Did I Get It? Early Stage Chronic Early Disease.  This is the definition of cholesterol offered there:

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.  So? Is that a big deal?

It is if you have Chronic Kidney Disease.  Dr. Joseph Vassalotti of The National Kidney Foundation explained it to reporter Jane Brody in an interview which is included in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1.DIGITAL_BOOK_THUMBNAIL

Good  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.

Digital Cover Part 2 redone - Copy HDL is High Density Lipoprotein, the cholesterol that keeps your arteries clear or – as it’s commonly called – the good cholesterol.  VDL 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.

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.  Last week’s blog may help with that.

Exercise will help, too. This is from Everyday Health at http://www.everydayhealth.com/high-cholesterol/fitness-and-cholesterol.aspx   and will give you an idea of how to start… just in case exercise is not in your vocabulary at this time.

       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

water walkingPlay around with the list. For example, I am not a water person and simply will not swim, although I’ve been known to water walk at the drop of a hat.  I love to walk and do as much as I can whenever I can.  Of course this is not a complete list.  Consider it a nudge to get started.

If 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. Is the risk of kidney failure or heart attack so great that you need the drug?  You might want to consider it then. But if it is being prescribed because “That’s protocol,” I would urge a serious heart to heart (good choice of words here) with the prescribing doctor or maybe even a second opinion.

4wedding

I hope you’ve enjoyed your cholesterol primer while I’m on my second attempt at a delayed honeymoon and busily avoiding all those goodies that are just plain bad for my cholesterol levels.

Until next week,

Enjoy 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!

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!

What If…

Have you ever become anxious about the unknown, specifically the future? You are not alone.  Since you have Chronic Kidney Disease, you are so the opposite of not being alone. You have a progressive disease, one which affects two of the most important organs your body possesses.

thCAQ0P7T3Most days, I wonder if I’ll stay at Stage 3A for the rest of my life or – despite my best efforts – I’ll end up on dialysis and need a transplant anyway.  It’s one of those things I try really hard not to dwell upon.

Whoops!  I did it again.  Let’s backtrack a bit so we all know what I’m writing about. I went back to the glossary of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the following definition of Chronic Kidney Disease (CKD).Book Cover

Chronic Kidney Disease:  Damage to the kidneys for more than three months, which cannot be reversed but may be slowed.

According to DaVita.com, Stage 3A means:

A person with stage 3 chronic kidney disease (CKD) has moderate kidney damage. This stage is broken up into two: a decrease in glomerular filtration rate (GFR) for Stage 3A is 45-59 mL/min and a decrease in GFR for Stage 3B is 30-44 mL/min.

There’s a wealth of Stage 3 information at http://www.davita.com/kidney-disease/overview/stages-of-kidney-disease/stage-3-of-chronic-kidney-disease/e/4749.

As usual, one definition leads to the need for another, in this case GFR.

Glomerular filtration rate (GFR) is a test used to check how well the kidneys are working. Specifically, it estimates how much blood passes through Glomerulus-Nephron 300 dpi jpgthe glomeruli each minute. Glomeruli are the tiny filters in the kidneys that filter waste from the blood.

Many thanks to MedlinePlus at http://www.nlm.nih.gov/medlineplus/ency/article/007305.htm for the definition.

Uh-oh, now we need to define both dialysis and transplant. 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.

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

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.faq_kidney_transplantation

All right, now that our background is in place, let’s deal with that anxiety.  Why worry (ouch!) if you have anxiety and you have CKD?

I went to The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 for help here.

Digital Cover Part 1In the August 16, 2012 post, I included this.

Poor mental health linked to reduced life expectancy

There  is  a  possibility  that  mental  health  problems  may  be  associated with  biological  changes  in  the  body  that  increase  the  risk  of  diseases such as heart disease.

In  this  study,  approximately  a  quarter  of  people  suffered  from  minor symptoms  of  anxiety  and  depression,  however,  these  patients  do  not usually come to the attention of mental health services. The authors say that  their  findings  could  have  implications  for  the  way  minor  mental health problems are treated.

The information was originally published on PyschCentral.com at http://psychcentral.com/news/2012/08/01/even-mild-mental-health-problems-linked-to-reduced-life-expectancy/42487.html

Not to be too morbid, but our life expectancy may already be reduced due to our Chronic Kidney Disease. Now we’re reducing it even further with our anxiety… even though we certainly may have cause to be anxious?

Time to deal with that anxiety.  But first, what exactly is anxiety?

The Free Dictionary’s Medical Dictionary at http://medical-dictionary.thefreedictionary.com/Anxiety is fairly explicit about what it is.

Anxiety is a multisystem response to a perceived threat or danger. It reflects a combination of biochemical changes in the body, the patient’s personal history and memory, and the social situation…. a large portion of human anxiety is produced by anticipation of future events.

Nothing I want any part of! So how to I reduce my anxiety about my CKD so that I don’t further reduce my life expectancy?

I was so taken with Barton Goldsmith, Ph.’s advice that I wanted to post it all, but that would make this week’s blog far too long.  You can read what I omitted at https://www.psychologytoday.com/blog/emotional-fitness/201205/top-10-tips-reduce-anxiety

  1. If you are prone to anxiety you have two choices .Give in to it or learn to live with it.support
  2. When you wake up tomorrow start doing something right away, and keep busy all day. Taking action by doing something, almost anything, will help you work through your anxiety.
  3. Focus your attention on where the feeling of anxiousness is in your body and keep your attention there until the feeling moves or dissolves.
  4. Anxiety will grow if it’s not directed into some positive action.Find someone who needs you and lend him or her a helping hand.
  5. Talking to someone is one of the best ways to overcome your anxiety.
  6. Exercise is another good way to keep from letting your fears overwhelm you.
  7. Start a gratitude journal; write down three to five things that you are grateful for. Do this every night, it works and it’s very easy.
  8. The opposite of fear is faith.When you are anxious, a great way to get out of it is to find some faith. Believing that things will get better is sometimes all it takes to make it better.
  9. If watching the news fills you with anxiety – turn off the TV!
  10. Courage is not the absence of fear, but taking action in spite of fear.

Now it makes sense to me that Bear and I have a gratitude jar into which we drop a slip of paper containing one thing that made each of us happy each day. Now it makes sense to me that I look for ways to help others.  I think I’ve been warding off my own anxiety without knowing it.

Talking about not knowing, have you seen P2P’s Chronic Illness Awareness Buy and Sell page on Facebook?Part 2

Until next week,

Keep living your life!

This Shouldn’t Hurt

Today is our second wedding anniversary, so I took a picture of me in my wedding dress.  While it is a one of a kind, handmade dress, it was far too2 year anniversary small when I bought it.  No problem, I figured.  I’ll just wear those slimming garments underneath.

That worked.  But I think they’re really torture garments. This year, after two years of exercising, renal dieting, and the new addition of high blood sugar dieting (oh, and blissful marriage), I was able to wear the dress without the torture garments.

What’s my point, you ask.  Simply, that there is hope, that exercise and following the correct diet for your health do pay off.  Since I only wear my wedding dress once a year on our anniversary, I got the chance to really see the difference in my body since last year…and, for once, I was pleased.

You know what pleases me. Now here’s what displeases me.  I didn’t know that lancets for testing blood glucose come in sizes.  Actually, I would have laughed had you told me that before I needed them and made some lewd comparison to a personal product that also comes in sizes.

I was working blind.  Now that my informative diabetes counselor told me about ultra-thin lancets, I’m a bit more comfortable sticking myself with them several times a day. But that doesn’t mean I understand the whole deal.  So today’s blog is pretty much about the mechanics of testing your own blood.

As usual, let’s start at the beginning.  Lancet is defined by The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/lancet as

A surgical knife with a short, wide, pointed double-edged blade, used especially for making punctures and small incisions.

lancetsMine is a little different since it has a cylindrical stem with a detachable, disposable cap.  Under the cap is a sharp, needle looking device that is what pierces my skin. The first few days I used one, I cried. It hurt. Bear was not going to put up with that and went to the pharmacy to find something better for me.  No one had told me these little guys came in ‘ultra-thin.’ I gather my PCP thought my pharmacist would tell me and my pharmacist thought my PCP told me.  Wrong on both accounts.

So, what are the mechanics that allowed the ultra-thin lancets to hurt less than the regular (for lack of a better word)? According to Diabetics Answers at http://diabetes.answers.com/management/blood-glucose-monitoring-how-to-test-your-blood-sugar-at-home

Blood sugar is tested by obtaining a very small blood sample from tiny capillaries under the skin. You do not use a vein to obtain the blood sample. The test is sometimes referred to as a finger stick because the sample is most often obtained from the fingertip with the help of a lancet.

In other words, you’re not creating a deep puncture at all.  That also explains why I can use the ultra-thin lancets; you only need a small drop of blood from the capillaries just under the skin.  Because I can use these, however, doesn’t mean you can.  Each of us is different. The MedSupplyGuide at http://www.themedsupplyguide.com/lancets/ tells us

The higher the gauge, the smaller the perforation the lancet makes. Usually a higher-gauge lancet is less painful to use, but it may be harder to get an adequate amount of blood with a higher-gauge lancet.layers of skin

Okay then, if you can’t get enough blood for the testing with the higher gauge lancet, you’ve got to experiment with lower gauges until you find the right one for you. The lower gauge hurt more for me, but that could be because I didn’t know about the lancet device.

While I was no longer crying with each prick, I was still tearing up.  My loving husband (You don’t need one of these; you can go to the pharmacy yourself which is what I was going to do before he beat me to it.) still wasn’t pleased with my everyday experience, so back to the pharmacy he went and discovered the lancet device. I can only imagine I wasn’t told about this for the same reason I didn’t know about ultra-thin lancets: miscommunication.

lancet devicesThese, my friends, are just plain wonderful. I went to Diabetic Live at https://www.diabeticlive.com/diabetes-101/how-to-use-a-lancet-and-lancing-device/ for help in explaining this one.

This instrument has a spring inside those {sic} forces the lancet to prick or make an incision on your finger. Then it draws back quickly. With a lancing device, you can change how deep or shallow you want the incision to be. Depending on what measurement you choose, it can alleviate additional pain and discomfort.

No more crying; no more tearing up, just the prick I was told I would feel.  Mine has depth settings from 1 to 5.  I’m still on 1 which is the shallowest piercing.  As my device ages and the spring wears out, I may have to use a higher setting to pierce at the same depth.

When you think about it, this is really simple. But who thinks about it if you don’t have to?  For the last month, since I’ve started treatment for the high blood glucose, I have felt like I was in a foreign land and didn’t know the customs. I’m still learning, but am so much more comfortable with the physical part of it.t-shirt

Aha! Talk about being physical… you are joining us for the Kidney Walk in Phoenix, aren’t you?  It’s at Chase Stadium on Sunday,tshirt pix the 19th and you can register there from 7:30 in the morning.  Or, if you’re like me and don’t like to wait for the last minute, you can register early by going to Kidneywalk.kintera.org.  We’re Team SlowItDownCKD.  Can’t make it but want to support us?  You can donate at the same address.  Above are the pictures of the t-shirt I’ve been promising.

Digital Cover Part 1

Many thanks if you wrote reviews for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Part 2Moderate Stage Chronic Kidney Disease, Part 2. I am asking for an anniversary present: please write a review.  Some people mentioned they don’t want their name posted anywhere; well, you can use a nickname or post a review anonymously.

Until next week,Book Cover

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!

Let Them Eat Cake!

The_Book_of_Blogs-_M_Cover_for_KindleWe have still not finished celebrating my birthday.  Say, now that you’ve downloaded your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 as my gift to you on my birthday, why not share it for free for 14 days on the Kindle Book Lending program?

Another low cost way of getting the book is asking someone who bought the print copy from Amazon to buy the digital one for you via the Kindle MatchBook program for $2.99.  Of course, you can always ask your library to order a copy.  There are lots of low cost and free ways to get the book.

We were up in Flagstaff for two days as part of my birthday celebration.  Bear remembered that I had repeatedly expressed a desire to see Meteor Crater. Yep, I wanted to visit a hole in the ground for my birthday.

While we were there, we also visited Sunset Crater and learned the difference between eruption and meteor craters.  Going whole hog, we drove IMG_1030along to Wakupti and Wukoki to see the ruins of the pueblos there. This is an amazing state we live in.

We had to stay somewhere, so we stayed somewhere special.  The England House Bed & Breakfast was built about 1902, which made me feel right at home since I raised my daughters in an 1899 Victorian house on New York’s Staten Island.  Now, here’s where the renal part of our overnight get-away comes into play and why there’s a blog about it.  I know, I know… you thought I just wanted to share my birthday fun with you.

Well, that too, but the owner of the B & B – Laurel Dunn – asked if we had any eating restrictions.  Good question for renal patients; bad question for those cooking for them.  I told her. In detail. With examples.  And she came through.

While my husband enjoyed fruit soup, I had fresh cut melon, strawberries, and blueberries.  I had never heard of fruit soup before, so Laurel explained that it was fruit liquefied with yoghurt. Uh-oh, the dreaded yoghurt. That’s not recommended on my renal diet due to the phosphorous in it.

As a Chronic Kidney Disease Patient, my kidneys do not filter my blood as well as they were meant to.  Too much phosphorous can cause problems. I went to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 81} to remind myself what phosphorous does for us and why too much of it is not a good thing when you’re a CKD patient.

Book CoverI have to admit I didn’t know anything about phosphorous. This is the second most plentiful mineral in the body and works closely with the first, calcium. Together, they produce strong bones and teeth. 85% of the phosphorous and calcium in our bodies is stored in the bones and teeth.  The rest circulates in the blood except for about 5% that is in cells and tissues. Again, phosphorous is important for the kidneys since it filters out waste via them. Phosphorous balances and metabolizes other vitamins and minerals including vitamin D which is so important to CKD patients. As usual, it performs other functions, such as getting oxygen to tissues and changing protein, fat and carbohydrate into energy.

Be aware that kidney disease can cause excessive phosphorus. And what does that mean for Early Stage CKD patients? Not much if the phosphorous levels are kept low. Later, at Stages 4 and 5, bone problems including pain and breakage may be endured since excess phosphorous means the body tries to maintain balance by using the calcium that should be going to the bones. There are other consequences, but this is the one most easily understood.

But, of course, there was more to breakfast.  Bear enjoyed a lovely soufflé and muffins.  Bing, bing, bing. A soufflé has a custard base, in other words, a creamy base.  I think I’ve mentioned before that I’m also lactose intolerant.  I’ll say this, it certainly looked tasty.  So what did I have instead?  A simple vegan cheese omelet with four spears of asparagus cunningly arranged over it.

The night before, Laurel had opened her refrigerator to me so I could read the labels on different products.  One was the vegan cheese. It looked all right as far as my sodium, phosphorous, potassium, and protein restrictions, but I had never tasted it before. Let’s just say it’s probably an acquired taste.  My fault, not Laurel’s.

And the excruciatingly aromatic muffins that Richard, Laurel’s partner, baked?  Why did I pass them up? You guessed it.  It was the phosphorous again.  But I did not go away hungry.  Laurel and Richard provided cranberry/blueberry bread from The Wild Flower Baking Company. Apparently this is a specialty item since I could not find it on their website to pull up the ingredients.

Let’s put it this way: this bread was so good that I had it instead of the ugly blue cake I got for the family because I felt bad for it.  I let them {the IMG_1039family} eat cake, while I feasted on the bread.  At least that was the plan.  Once they tasted my bread, they clamored for it.  Ever see five grown children and a husband politely clamor?

But wait, there’s more.  Each juice Laurel had contained added sugar of some kind… except Ceres mango. It was not nectar, but juice sweetened with another juice – pear juice.  And it was delicious.  That became what I was going to have instead of ice cream at my birthday dinner.  Well, until everyone else tasted it.  You know the story.

You don’t think I let a breakfast go by without 1/2 of of my 16 ounces of coffee a day, do you?  It was superb, absolutely superb.

Add chicken cacciatore with brown rice that I made and was totally renal friendly and that, my friends, is how to enjoy your birthday get-away and your birthday dinner without breaking the renal diet.

IMG_1028As for exercise, ummm, well, it was too cold! No, really.  See, I’m even wearing a coat. I console myself with the fact that I got right on the exercise band wagon the very next day.  That’s okay, right?  It is, isn’t it?

Until next week,

Keep living your life.

Is It Really So Bad?

Lately I’ve been experiencing what is commonly referred as interrupted sleep pattern.  According to Wikipedia – which is open to the general public for editing – this is the definition:

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

I know, I know.  You’re thinking “Well, of course you are with all the excitement that goes along with the publication of The Book of Blogs: Moderate Stage Chronic Kidney Dsleepisease this past week and all the celebrations that go along with the holidays.”  You’re right, it is exciting, but that’s not the cause of my interrupted sleep.

No, it’s not worry about my sweet dog’s cancer problems, either.  She has had three operations and is recovering so well that she doesn’t realize she still has an open wound at one of the surgery sites.

Well, yes, it is true I have sleep apnea. According to WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/sleep-apnea:

Sleep apnea is a serious sleep disorder that occurs when a person’s breathing is interrupted during sleep. People with untreated sleep apnea stop breathing repeatedly during their sleep, sometimes hundreds of times. This means the brain — and the rest of the body — may not get enough oxygen.  . 

But I also have a Mandibular Advancement Device that treats the problem.  This is how the device works as explained at http://www.mandibularadvancementsplint.com/mad

Mandibular advancement is a simple technique for opening the airway, keeping the palate taught and helping your breath to flow during sleep – thereby preventing snoring and relieving mild to moderate OSA. Mandibular advancers work, as the term implies, by advancing the lower mandible forward. This is often done using a malleable mouthpiece that is worn between your upper and lower teeth when sleeping.

While I am not specifically endorsing their product, their explanation is clear.

Restless leg syndrome?  No, I don’t have that.  But here’s what MedicineNet at http://www.medicinenet.com/restless_leg_syndrome/article.htm has to say about it anyway:

Restless leg syndrome (RLS, restless legs syndrome) is a common cause of painful legs. The leg pain of restless leg syndrome typically eases with motion of the legs and becomes more noticeable at rest. Restless leg syndrome also features worsening of symptoms and leg pain during the early evening or later at night.CoffeeCupPopCatalinStock

Hmmm, I’m pretty careful about sleep hygiene.  Let’s go to http://sleepfoundation.org/ask-the-expert/sleep-hygiene for an explanation of just what that is.

  • The most important sleep hygiene measure is to maintain a regular wake and sleep pattern seven days a week.
  • Avoid napping during the day. It can disturb the normal pattern of sleep and wakefulness.
  • Avoid stimulants such as caffeine, nicotine, and alcohol too close to bedtime. 
  • Exercise can promote good sleep. 
  • Food can be disruptive right before sleep.  
  • Ensure adequate exposure to natural light
  • Establish a regular relaxing bedtime routine.  Associate your bed with sleep. 
  • Make sure that the sleep environment is pleasant and relaxing

So what is the problem?  Surprise, well it was a surprise to me.  Chronic Kidney Disease, even “milder degrees of kidney disease” could be the cause.

bluesThis was the headline for a June, 2013, MedScape article about a (then) recent study:

Sleep Problems Common in Chronic Kidney Disease

“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

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.  It’s a good thing I’ll be seeing my nephrologist next month because I have loads of questions about whether there is any scientific proof behind my thinking and, if so, what that is.

Oddly enough, while I’m concerned about segmented sleeping, there seems to be a movement espousing it as the healthiest way to sleep. This quote from National Post at http://life.nationalpost.com/2012/07/16/rest-assured-theres-nothing-wrong-with-segmented-sleep/     hit the nail on the head for me:

So my curiosity was piqued when a recent BBC online story, “The myth of the eight-hour sleep,” shone a light on a growing body of research suggesting that “segmented sleep” is perfectly normal. It appears that in centuries past, and in pre-industrial societies, bedtime has meant falling asleep once, then waking for awhile, and then going back to bed for a “second sleep.”     

So now I can drive myself nuts wondering whether this segmented sleep is a good thing for a CKD patient or simply wait to speak to Dr. Atalla since my usual researching is not helping here.  I vote to lay the issue aside until I speak with him.

41DsvandphL._BO2,204,203,200_PIsitb-stThe Book of BlogsOh, but I do want to speak with you.  To celebrate the publication of my second CKD book, The Book of Blogs: Moderate Stage Chronic Kidney Disease, Amazon.com has been kind enough to allow me to offer the digital copy for 99 cents tomorrow and Wednesday.  Get it?  Two books, two days. Unfortunately, there wasn’t any way to work out offering What Is It and How Did I Get It? Early Stage Chronic Kidney new blog shotDisease for 99 cents for the same two days.  Wouldn’t that have been perfect!

Amazon has been terrific about offering free samples of the book, arranging for the Look Inside feature, and including the book in both Kindle Unlimited and Kindle Owners’ Lending Library. If you belong to those programs, you can borrow the book for free.

Until next week,

Keep living your life!

Up and Down…and Up…and Down

I usually base the blog upon what’s happening in my medical life or those of my family members and friends.  I thought I wouldn’t have anything to write about today. But then I got my latest lab results.  Ugh!

eGFR MDRD Non Af Amer >59 mL/min/1.73 47

There’s been some variation in my eGFR for the last few months and it hasn’t all been good.  What’s the eGFR, you ask.  Let’s start with the GFR and use the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 132} for the definition:

Glomerulus-Nephron 300 dpi jpg“Glomerular filtration rate [if there is a lower case “e” before the term, it means estimated glomerular filtration rate] which determines both the stage of kidney disease and how well the kidneys are functioning.”

Wonderful, except we need to know what glomerulus means since the suffix ‘ar’ tells us that glomerular is an adjective or word that describes a noun – a person, place, thing, or idea.  In this case, the noun is glomerulus.   Thank you dictionary.reference.com for the following:

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

Yes, yes, I know more definitions are needed.  Back to the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease {page 134 this time):

“Nephrons: The part of the kidney that actually purifies and filters the blood.”

A tubule, as you’ve probably guessed, is a very small tube.  This is when having been an English teacher for decades pays off in my kidney work!

Maybe we should define capillary too, in case you’ve forgotten what it is. This time I used Merriam-Webster.com at MedlinePlus.

“a minute thin-walled vessel of the body; especially: any of the smallest blood vessels connecting arteriole with venules and forming networks throughout the body.”

In other words, they’re the smallest blood vessels in the body.

Alright, we’ve got our vocabulary in place; now why is the eGFR so important? As stated in the definition above, it is used for staging your Chronic Kidney Disease.  Different stages require different treatment or no treatment at all.  There are five stages with the mid-level stage divided into two parts.  The higher the stage, the worse your kidney function.stages chart

Think of the stages as a test with 100 being the highest score.  These are the stages and their treatments:

STAGE 1: (normal or high) – above 90 – usually requires watching, not treatment, although many people decide to make life style changes now: following a renal diet, exercising, lowering blood pressure, ceasing to smoke, etc.

STAGE 2: (mild) – 60-89 – Same as for stage one

STAGE 3A: (moderate) – 45-59 – This is when you are usually referred to a nephrologist {kidney specialist}. You’ll need a renal {kidney} dietitian, too, since you need to be rigorous in avoiding more than certain amounts of protein, potassium, phosphorous, and sodium in your diet to slow down the deterioration of your kidneys. Each patient has different needs so there is no one diet.  The diet is based on your lab results.  Medications such as those for high blood pressure may be prescribed to help preserve your kidney function.

STAGE 3B: (moderate) – 30-44 – same as above, except the patient may experience symptoms.

STAGE 4:  (severe 15-29) – Here’s when dialysis may start. A kidney transplant may be necessary instead of dialysis {artificial cleansing of your blood}. Your nephrologist will probably want to see you every three months and request labs before each visit.

STAGE 5: (End stage) – below 15 – Dialysis or transplant is necessary to continue living.

Many thanks to DaVita.com for refreshing my memory about each stage.

Back to my original concern about the GFR results in my labs.  Why did it fluctuate from 53 in August of last year, to 47 in February of this year, to 52 in May, to 56 in August, and to 47 last week? All the values are within stage 3A and I know it’s only a total fluctuation of six points, but it’s my GFRfluctuation so I want to know.  And that’s what started this whole blog about GFR.

I discovered that different labs may use slightly different calculations to estimate your GFR, but I always go to the same lab, the one in my doctor’s office.  Nope, that’s not my answer.

According to the American Kidney Fund, “…this test may not be accurate if you are younger than 18, pregnant, very overweight or very muscular.”  No, these situations don’t apply to me either.

Maybe I’m going about this all wrong and should look at the formula for arriving at GFR. The National Kidney Disease Education program lists the formula which includes your serum creatinine.  Aha! Maybe that’s the cause of the variation.  First a reminder: creatinine is the chemical waste product of muscle use. {This is a highly simplified definition.}

You’ll find this on your Comprehensive Metabolic Panel Blood Results, should you have your results. The normal values are between 0.57 and 1.00 mg/dL.  Mine were above normal for each test, a sign that I have CKD.  As if I didn’t already know that. These results were also lower each time my GFR was higher.

iPadI researched and research.  My final understanding is that not only can CKD elevate your creatinine, but so can dehydration, diabetes or high blood pressure.  If your creatinine is elevated, the results of the GFR formula will be lowered.  That’s enough information to allow me to rest easy until I see my doctor next week.

Some of this was pretty technical and I couldn’t give you many exact web addresses since my computer is having its own issues today.  You may want to try an online GFR calculator just to see how it works.  You will need your serum creatinine value {serum means blood, so this is not to be confused with the urine creatinine test} to do so.  I like the one at DaVita.com.

Until next week,Book Cover

Keep living your life!

Put your Back into It for a Few Minutes

You can always tell what’s troubling me by the topic of each week’s blog.  This week it turns out I have “irritated disks.”  I kid you not.  It actually makes sense since Bear has some ruptured disks that won’t be treated until Friday and I’ve taken over his chores for a while.bad back

Let’s go back to the very beginning to explain this one. Here’s the definition I’ll be using for disk,

“Fibrocartilaginous material between spinal vertebrae which

 provides a cushion-like support against shock”

Thank you, McGraw-Hill Concise Dictionary of Modern Medicine for that.

Here we go again: a definition that needs another definition to understand the first definition.  Naturally you’d want to know what fibrocartilage is. According to Gale Encyclopedia of Medicine, it’s

“Cartilage that consists of dense fibers.”

Hang on there.  We need one more definition. I went to MedicineNet at http://www.news-medical.net/health/Cartilage-What-is-Cartilage.aspx for this definition of cartilage.

“….It is a firm tissue but is softer and much more flexible than bone.”

So we have soft, firm, flexible, dense fiber material between our spinal vertebrae.

Our what?  Vertebrae is

pic_backbone_side“a bone of the spinal column, typically consisting of a thick body, a bony arch enclosing a hole for the spinal cord, and stubby projections that connect with adjacent bones.”

 You can learn more about this by searching The Encarta Dictionary.

For the definition of spinal column (and you thought we were done with definitions), I chose to use Collins Dictionary at http://www.collinsdictionary.com/dictionary/english/spinal-column. There I found this definition:

“A series of contiguous or interconnecting bony or cartilaginous segments that surround and protect the spinal cord.”

I used to tell my children when they were little and my back hurt that the stuff between my vertebrae that acts as a cushion wasn’t cushioning right. Simple, direct, and to the point. Apparently I’m on the verge of that again. And I WILL stop it before it gets any worse.

How, you ask?  My chiropractor suggested ice for twenty minutes, then take it off for an hour and repeat… and repeat… and repeat.  With Chronic Kidney Disease, I need the daily exercise to keep my organs – all of them – strong, especially since CKD can eventually affect your other organs.  It’s our not-quite-filtered blood that feeds these organs, so we need to keep them healthy in as many ways as we can.

The icing is helping, but I have re-discovered my inability to do nothing for twenty minutes at a time.

So far, I’ve made sure to wear the dental device that helps my mandible return to normal placement after a night of wearing the Mandibular Advancement Device that treats my sleep iPadapnea.  I’ve also used the twenty minute to peruse Twitter, email, and Facebook for kidney information via iPad.  I’ve even done my banking online in this same twenty minutes.

As you can see, every minute of my time is important to me.  That’s why I was so glad to find new information that every minute you exercise counts.  Obviously with my back sort-of- injury (I don’t consider it an injury unless I can’t walk!), I’ve had to limit my exercise.

That’s the bane of my existence anyway… not the limiting, but the exercise. I usually ride five or six miles on the stationary bike or do a two mile walking tape with weights and stretch bands. I have to admit, I do it only because I have to.  I’d rather read or write anytime.

Although, I love my Sunday night exercise: the blues dance lesson my daughter, Abby Wegerski, and her partner provide at The Blooze Bar.  If you haven’t been there yet and you’re local, why not?  It’s downright fun!

blues dancersBack to every minute of exercise counts (Hurray!) This is the first paragraph of the news article about this study published on September 13 of this year.  You can tell right away why I like it.

“A new study suggests something encouraging for busy people: Every minute of movement counts toward the 150 minutes of moderate-intensity physical activity we’re all supposed to be getting each week. University of Utah researchers found that each minute spent engaging in some kind of moderate to vigorous physical activity was associated with lower BMI and lower weight.”

I have to admit I don’t break down that 150 minutes each week into daily totals when I think about exercise and it’s overwhelming.  Break it down and it’s only a little less than 22 minutes a day. Hey, that’s MY 22 minutes a day.

So what do they mean by “moderate-intensity physical exercise”?  I specifically looked at other than what we’d already consider exercise which can be incorporated into your everyday activities.

I park a little further away from my destination than I need to whenever I drive somewhere.  If I’m not able to walk too well that day due to plantar fasciitis, I’ll chop vegetables or mix my from scratch pancake batter by hand.  If my hands hurt from arthritis or neuropathy that day, I’ll play with Bella – the cancer free wonder dog.IMAG0269 (1)

Wait a minute, these are all suggestions made in the study. And better yet, they count toward my 150 minutes of exercise a week.  I like the idea that you don’t have to chuck the whole idea of exercise if you don’t have time to go to the gym, or climb your friendly, local mountain, or ride a bike 10 miles.

I know it’s hard to believe, so I’d suggest you take a look at the article about the study yourself at http://www.nbcnews.com/health/diet-fitness/every-minute-physical-activity-really-does-count-new-study-shows-f8C11042850 I especially like that my five minutes of rigorous dancing or riding the bike or exercising to those walking tapes count.  Well, my five minutes usually turns into more since I figure I’ve started so I might as well finish my twenty minutes or thirty minutes of exercise that day.

Book wise, I’m hard at work on The Book of Blogs, but have no finish date yet since I really don’t want to do any work when my beloved brother and sister-in-law are here for the two weeks I convinced them to stay.  Just one more week, just one more week. I’m like a child awaiting Santa!

Book CoverWhat Is It And How Did I Get It? Early Stage Chronic Kidney Disease is alive and well.  There just may be a European book signing tour in the spring for this book.  We’re contemplating Germany, Amsterdam, and London.  Readers, please let me know if you’re from these countries.

Until next week,

Keep living your life!

It’s All Connected

About those random posts you may be receiving from me… I am transforming the blog into a book as promised.  However, I don’t really know what I’m doing and am learning on the job, so to speak.  I Kidney Book Coverwouldn’t be at all surprised if you heard me yelling, “OH, NO!” (and worse) at least once a day from now until the process is complete.  I guess you’re bearing witness to my learning process. Boy, am I ever grateful you’re a patient lot!

Now, what I really wanted to write about. I got a call from my primary care physician telling me that while I had improved my BUN, Creatinine, BUN/Creatinine Ratio, LDL, and eGFR levels on my last blood test, the Microalbumin, Urine, Random value was abnormal at 17.3. I checked online to make certain I had heard her correctly.

Dr. H. Zhao practices at Deer Valley Family Medicine here in Phoenix.  The practice started using a site to report your results as soon as they’re available, sometimes the next day.  I wonder why I got that call at all when this process is in place.

When I finally finished congratulating myself for all these improvements, I started to question why the Microalbumin value was out of range.  I knew it hadn’t been out of range last year, but I did have Chronic Kidney Disease.  That in itself would have meant it would be out of whack, wouldn’t it?

Here we go again.  I pulled out my trusty copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease and turned to Chapter 5, “What Flows Through You,”  The Random Urine Tests,  number 9299 on page 52 (Honestly? I used the word search function for the digital book, even though I had the print copy in front of me.  It’s just plain easier!) and found:

“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 theBook Cover

  albumin should have been dissolved. Protein in the urine may be an indication of kidney disease.”

Of course I wanted more.  We all know micro from micro-mini skirts (Are you old enough to remember those?) and microscope.

Wait, if protein in the urine “may be an indication of kidney disease” – which I have – why was this a problem?  Or was it a problem?

Both high blood pressure (which I do have) and diabetes (which I don’t) could be the cause since both may lead to the proteinuria (protein in the urine, albumin is a protein as mentioned above) which may indicate CKD. Microalbuminia could be the first step to proteinuria.

But, as usual with medical conditions, it’s not that black and white.  I scurried over to our old friend WebMD at http://www.webmd.com/a-to-z-guides/proteinuria-protein-in-urine to look for other risk factors and found these:

  • Obesity
  • Age over  65
  • Family history of kidney disease
  • Preeclampsia (high blood pressure and proteinuria in pregnancy)
  • Race and ethnicity: African-Americans, Native Americans, Hispanics, and Pacific Islanders are more likely than whites to have high blood pressure and develop kidney disease and proteinuria.

While I’m well past child bearing, I’m also over 65 and, ummm, (how’s this for hedging?) clinically obese.  Does that mean proteinuria is to be my new norm?

NIHMaybe there’s something more I can do about this.  According to Skip NavigationU.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES‘ 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/proteinuria/

“In addition to blood glucose and blood pressure control, the National Kidney Foundation recommends restricting dietary salt and protein. A doctor may refer a patient

to a dietitian to help develop and follow a healthy eating plan.”

 This is nuts!  I have CKD.  I already restrict myself to five ounces of protein a day. I’ve abolished table salt from the house and watch the salt content in the foods I eat. I’m handling my blood pressure with Losartan/HCTZ. (See the next paragraph.) I haven’t progressed from microalbuminuria to proteinuria, yet I’m still doing more damage to my body.

MedicineNet at http://www.medicinenet.com/losartan_and_hydrochlorothiazide/article.htm explains the Losartan/HCTZ very well:blood pressure 300dpi jpg

“Losartan (more specifically, the chemical formed when the liver converts the inactive losartan into an active chemical) blocks the angiotensin receptor. By blocking

the action of angiotensin, losartan relaxes the muscles, dilates blood vessels and thereby reduces blood pressure….Hydrochlorothiazide (HCTZ) is a diuretic (water

pill) used for treating high blood pressure (hypertension) and accumulation of fluid. It works by blocking salt and fluid reabsorption in the kidneys, causing an

increased amount of urine containing salt (diuresis).”

Uh-oh, that leaves blood glucose, which has never been high for me.  However, my A1C has been high since this whole CKD ride has started.A1C

Let’s back track a little. The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/a1c-test/basics/definition/PRC-20012585  tells us:

“The A1C test result reflects your average blood sugar level for the past two to three months. Specifically, the A1C test measures what percentage of your hemoglobin — a protein in

red blood cells that carries oxygen — is coated with sugar (glycated). The higher your A1C level, the poorer your blood sugar control and the higher your risk of diabetes complications.”

I don’t have diabetes…yet.  It’s becoming clear that I will – in addition to worsening my CKD – if I don’t pay even more attention to my diet and become more stringent about sore kneeexercising.  It’s sooooo easy to say not today when the arthritis rears its ugly head…or knee.

It’s been said there’s no way to do it, but to do it (by me, folks.  Ask my children.) So now I need to take my own advice and get back to the stricter enforcement of the rules I know I need to live by.  After all, they let me live.

If you ever needed proof that the body is an intricate thing with all its part being integrated, you got it today.

Until next week,

keep living your life!

Awwww, Do I Have To?

 

blues

That, ladies and gentlemen, is my internal dialogue every day when it’s time to exercise… except when my exercise for the day is Sustainable Blues at the Blooze Bar on Sundays at 5. (32 St.  & Cactus, just in case you were thinking of flying out to Phoenix, Arizona, to join us.)

Here’s a link to a YouTube showing me dancing there, after the lesson, with the charming Robert Mullen: http://www.youtube.com/watch?v=3XFAd6eh1MA. Just copy and paste it into your search function.

Anyway, back to the answer to my question. My answer to myself is inevitably a resounding, YES!!! Okay, I know I have Chronic Kidney Disease – still holding at stage 3, thank you very much – and need to exercise to slow down the progression of the disease.  But why?  I mean, how does that help?

I’m going to quote heavily from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease here. I’ve already done the research to answer the question but, quite frankly, have forgotten what I found. It’s in the book.Book signing

Got your digital edition pulled up on your reading device so you can do a phrase search?  Great.  For those using the print version of the book (OMG, I feel like I’m teaching college again.), let’s turn to page 100 in Chapter 10: Getting the Necessary Exercise.

I knew exercise was important to control my weight.  It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine.  There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start.

I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensify your activity.

  Yikes!  There are some terms there those of you without the book may not know.  Here’s a little glossary for you:

blood pressure 300dpi jpgBlood pressure: the pressure exerted by the blood against the walls of blood vessels. Blood pressure depends on the strength of the heartbeat, thickness and
volume of the blood, the elasticity of the artery walls, and general health. (Encarta Dictionary)

Cholesterol: while the basis for both sex hormones and bile, can cause blockages if it accumulates in the lining of a blood vessel. (What Is It And How Did I Get It? Early Stage Chronic Kidney Disease)

Creatinine: chemical waste product that’s produced by our muscle metabolism and to a smaller extent by eating meat. (MayoClinic.org)

Triglycerides: a type of fat found in your blood. Too much of this type of fat may raise the risk of coronary artery disease, especially in women. (Medline Plus)

I’ve used different sources for the definitions so as to bring you the most easily understood ones.  After all, we’re not doctors here.GFR

Okay, I get it.  Exercise is absolutely necessary since CKD prevents your body from adequately filtering wastes – like creatinine – from itself.

Now my task was to find more exercise that I don’t mind doing… like blues dancing. Even though I seem to be dancing at half time, I come out of the bar thoroughly soaked despite the air conditioning.  That’s my personal indicator for effective exercise.

After almost a year (Bear’s surgery and recuperation, remember?) we went to the gun range yesterday.  I had decided several years back that I no longer want to compete, even though the Single Action Shooters’ Society competitions were fun to a point, but I did still want to target shoot.Rae%208x10%205792%20Sepia%20TinType[1]

On a whim, I started playing with the internet to see if target shooting burned enough calories to be considered exercise.

Whoopee!  It does!  It burns almost as many calories as half an hour on the stationary bike and uses a whole bunch of different muscles.  Don’t believe me?  Take a look at the calorie counter at: http://www.fitday.com/webfit/burned/calories_burned_Pistol_shooting_or_trap_shooting_standing.html.  Oh goody, another exercise I enjoy.

I have to admit that I enjoy the stationary bike, too, IF one of ‘my’ shows is on TV or I have a good book.  I’m wondering how long I can do this type of exercise, though, since my knees have started declaring their presence in a demanding, non-loving way. Enter knee supports.

And, yes, I still do the Leslie Sansone Walking Tapes I described in the book, but you’ve got to remember that your body becomes accustomed to a certain kind of exercise and then it isn’t as effective anymore… and I was wearing knee supports for this, too.

water walkingI do the water walking I wrote about a few blogs back (no knee supports) as often as I can.  Of course, no sooner did I decide I liked it then monsoon season started here.  It’s certainly not as bad as it’s been in years past, but I’m still not going into a pool when there’s rain.  And then, there are the haboobs (dust storms).  No thanks, I’ll find some kind of indoor exercise if there’s a warning for one of those.

By the way, we are not alone in exercising more.  We may do it because we have to, but the whole country is interested in exercising lately. According to the Centers for Disease Control and Prevention eNews headline of 5/15/14, “Neighborhood Support of Physical Activity on the Rise.”

I’ll be publishing this blog from New York where we will have traveled to see family and friends.  I’ve already got it figured out.  We’ll be gone eight days, so I’m taking the knee supports and plan to walk my brains out.

And stairs!  New York buildings have loads of stair.  My brother actually lives on the 11th floor of his building.  I could walk up to his apartment!

Well, unless another, more fun opportunity for exercise presents itself. I wonder if dragging two big pieces of luggage on rollers count?

Until next week (when I’ll be back in lovely monsoony, habooby Arizona),

Keep living your life!

Number Three on The List

“Other studies have suggested that once diagnosed with kidney disease, weight loss may slow kidney disease progression, but this is the first research study to support losing belly fat and limiting phosphorus consumption as a possible way to prevent kidney disease from developing.”Vassalotti Photo June2010  Dr. Joseph Vassalotti, chief medical officer at the National Kidney Foundation  11/3/13

Why has this little gem not caused more positive uproar?  We already accept that high blood pressure and diabetes are the two leading causes of Chronic Kidney Disease and that preventing each may lessen your chances of developing the disease.  Are we now looking at a third deterrent to developing CKD?

When I first wrote What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I was so eager to spread the word that I called Dr. Vassalotti and asked him to read the book.  He was encouraging, and oh-so-willing to discuss anything CKD.  I immediately trusted and believed what he had to say… and believe him now, especially with the research studies behind him.

So what is phosphorous, anyway?  I defined it in my book as

“One of the electrolytes, works with calcium for bone formation, but too much can cause calcification where you don’t want it: joints, eyes, skin and heart.”Book Cover

Hmmm, I don’t see any relation to preventing CKD there.  I researched my usual sites and found that they also discussed the effects of phosphorus on the bones in CKD, but nothing about how limiting it might prevent the disease from developing. 

You can find an abstract of the original study (but it’s rough going unless you have a medical background) at: http://www.ajkd.org/article/S0272-6386(13)00825-1/abstract. By the way, this is a well-respected journal, should you be interested in taking a gander. 

It was too technical for me, so I keep referring to the Medical News Today article.  In research work, this is called a secondary source.

AJKD Okay, let’s take another look at The American Journal of Kidney Disease’s information about this study as it was covered by Medical News Today at: http://www.medicalnewstoday.com/articles/268144.php.

But first, here’s what I found about phosphorous at MedlinePlus, a service of the U.S. National Library of Medicine at The National Institutes of Health   (http://www.nlm.nih.gov/medlineplus/ency/article/002424.htm),

“It plays an important role in how the body uses carbohydrates and fats. It is also needed for the body to make protein for the growth, maintenance, and repair of cells and tissues.”

This is new information to me and makes sense according to the article in Medical News Today.  So we’re not just dealing with phosphorus’s importance in bone health, but in the body’s use of carbs and fats.

If phosphorous is not doing its job as an electrolyte, there’s a good chance you are gaining weight. Think about all those carbs and fats not properly being eliminated from your body.  More caloric intake equals fat development.  (I do realize we’re not taking exercise into account here.)

This sentence from The Huffington Post’s Healthy Living section last March caught my attention in a big way: “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: belly fathttp://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://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.  All we need to know now is how this possible inflammatory state can cause CKD.

Thank you to Medical News Today for making it clear in this article:

“The researchers from Johns Hopkins claim that reducing your waist circumference and cutting down on dietary phosphorus have been linked to lower levels of protein in the urine (albuminuria). The presence of this protein in urine is one of the first indicators of kidney disease.”

chocolateI exercise.  I follow the kidney diet.  What was I eating before I developed CKD that might have contributed to its onset?

Although I considered myself a health nut, I loved chocolate…milk chocolate. Yep, high in phosphorous.

As I researched different sites, I realized being a health nut was exactly the opposite of what I should have been.  All of the following are on the majority of high phosphorous food lists: quinoa, oats, bran, milk, cheese, whole wheat, whole grain, dried beans or peas, brown rice or wild rice.

If you’re identifying with me, do not – I repeat: do not – beat yourself up.  Remember the connection between high phosphorous levels, belly fat, and CKD is new information.

Here’s a hint: avoid processed foods since they have phosphorous added to extend their shelf life.  I learned that somewhere along the way in my CKD journey, probably from my renal nutritionist. You can also add a recent product, flavored water, to the list of high phosphorous foods to avoid.

Unfortunately, phosphorous is not usually listed on labels.  Although, I did see PHOS listed once or twice.  Hopefully, it will become common usage to list phosphorous in the near future.

When I was a young woman, I wondered why I should keep up with the latest scientific research.  After all, new discoveries were making what I already learned obsolete on a daily basis.  Now I know why.

I have two daughters, two step-daughters, three almost sons-in-law, and a husband who loves me.  I want to be around to be part of their futures.  If it takes constant monitoring of the new CKD information, I’ll do it.

We leave for New York on Wednesday and I’m finally getting excited.  One or two medical emergencies in New York both kept me from being excited and wanting to hurry up to be there at the same time.  They are being resolved as I write.

AND I get to see Nima, my one child still living in New York. Oh, and friends of very, very long standing and my niece and her family.  Hah! I’m so excited now I can barely sit still to type. Nothing like dancing at the computer.NYC

Until next week when I’ll publish from The Big Apple,

Keep living your life!

Life Is Just A Bowl Of Cherries

Here I was all ready to write about sulfur drugs and CKD or hearing and CKD when I received an email from  Cindy Bruggner who’d just bought some good looking bing cherries but wasn’t sure whether to eat them or not.  We all know that cherries simply don’t last that long, so – Cindy – this one’s for you.

cherries

The big issue about eating cherries when you have Chronic Kidney Disease is their potassium content. I went straight to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to see what I’d written about this. In the Glossary (on page 134) I found this definition:

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

While that’s true, we’re going to need more to help Cindy out. So I turned to Chapter 8: The Renal Diet (page 75).

“Potassium is something you need to limit when you have CKD despite the fact that potassium not only dumps waste from your cells but also helps the kidneys, heart and muscles to function normally.  Too much potassium can cause irregular heartbeat and even heart attack.  This can be the most immediate danger of not limiting your potassium….

Book Cover…Check your blood tests. 3.5-5 is considered a safe level of potassium.  You may have a problem if your blood level of potassium is 5.1-6 and you definitely need to attend to it if it’s above 6.  Speak to your nephrologist ….”

I checked with the National Kidney Foundation http://www.kidney.org/atoz/content/potassium.cfm about those levels just to be sure they hadn’t changed since the book was published.  They haven’t.

That got me to wondering why cherries are considered good for the general population, but not CKD patients. So, of course, I did a little research.  Green and Healthy at http://www.greenandhealthy.info/kidneydisease.html#ckd suggests those without kidney disease eat cherries for the following reason:

“According to research from Michigan State University tart cherries contain anthocyanins [Thought you might like to know this means natural pain relieving and anti-inflammatory properties], bioflavonoids, which inhibit the enzymes Cyclooxygenase-1 and -2, and prevent inflammation in the body. These compounds have similar activity as aspirin, naproxen and ibuprofen.”

Sounds good to me since we can’t take some of those pain relievers, but cherries have the same effect.  Something was nagging at me though.  Back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. As I read page 3, I realized why:

“The problem with unregulated minerals, such as sodium and potassium is that these minerals are needed to remain healthy but too much in the bloodstream becomes toxic. The kidneys remove these toxins and change them into urine that enters the bladder via the ureter.”kidney location

Well, healthy kidneys do, but just how effective are your compromised kidneys at doing this job? I went to DaVita at http://www.davita.com/kidney-disease/diet-and-nutrition/lifestyle/top-15-healthy-foods-for-people-with-kidney-disease/e/5347, but in addition to the usual warnings about potassium levels, I found this:

“1/2 cup serving fresh sweet cherries = 0 mg sodium, 160 mg potassium, 15 mg phosphorus

Cherries have been shown to reduce inflammation when eaten daily. They are also packed with antioxidants and phytochemicals that protect the heart.”

Does that mean they’re good for CKD patients?

From my reading, I’ve also garnered the information that cherries can help with iron deficiencies, lower blood pressure, improve sleep, help with gout, and lower the risk of heart disease.

Or can they? Remember that too much potassium can actually cause an irregular heartbeat or possibly stop your heart.

Oh Cindy, I’m sure I’ve only added to your confusion.  Watch your potassium levels.  Look them up on your last blood test.  Why not give your nephrologist a call, too, just to be sure.  Do you have a renal nutritionist? He or she would know far better than I since this question of whether to eat the cherries or not is so individualized.

Then we have stages.  I am stage 3, which I used to think was early stage (hence the book’s title) but now realize is moderate damage.  I don’t know what stage Cindy is, but I do know the dietary rules change when you reach end stage and I’m going to guess they’re even different for those on different kinds of dialysis and those who are transplants.stages chart

So Cindy’s question is sort of asking me which sexual position is best for her.  I’m purposely being provocative here so that you’ll see just how individualized the renal diet is. What’s best for you depends on your needs.  Call the nutritionist!

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.  Apparently, potassium could be a problem here, too. This is what I found:

“Potassium is a mineral found in many foods, especially milk, fruits, and vegetables. It affects how steadily your heart beats. Healthy kidneys keep 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.”

Okay, cherries can be a problem.  Then I started wondering if it mattered what type of cherries they were. I found at least 18 different kinds, but none of the websites discussed potassium.

I learned more about cherries and potassium than I thought I wanted to.  I’m sure you did, too, but I offer you the same advice I offered Cindy: check with your renal nutritionist or nephrologist – always.  I am not a doctor, but rather someone who researches CKD on a layman’s level.  Cindy, thanks for asking.

Holy cow!  July 4th weekend is sneaking up on us!  I’m looking forward to as much water walking as we can get in since two, not one, but two neighbors have offered us the use of their backyard pools – one actually a lap pool – and we have discovered our neighborhood pool which charges only $20 per person a season.  We may not have the ocean out here, but we’ve got lots of pools.  Here’s hoping you enjoy your holiday weekend.

Kidney Book CoverWhoops!  Almost forgot to include that SlowItDown will now be sharing the book’s Facebook page, twitter account, website (http.gail-rae.com), email address (myckdexperience@gmail.com) and telephone number (602-509-4965).  I was getting run down trying to run the two separately in addition to my personal one!

Until next week,

Keep living your life!

Not ON the Water, IN It

It’s hot, 112 degrees already and summer has just started. Much as I’d love to, I can’t stay in the house writing all day, every day. I also need to exercise on a daily basis… as do you if you have Chronic Kidney Disease.

What’s that? Why do you have to exercise if you have CKD, you ask? Let’s go back to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, page 100, for the answer to that one. (Digital book owners, don’t forget to use the search document function instead of the page number.)Book Cover

“I knew exercise was important to control my weight. It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine. There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising.

I researched, researched and researched again. Each explanation of what exercise does for the body was more complicated than the last one I read. Keeping it simple, basically, there’s a compound released by voluntary muscle contraction. It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensity your activity.”

I’ve mentioned water walking as an exercise and gotten quite a few questions about it. I have to admit I’d never heard of it before I moved to Arizona and met Bear. His house is in a senior citizen community that has a community center with a water walking pool.

It was exciting to be doing something I’d never done before and questioned him unmercifully, although he kept telling me you get in a pool that has lanes and walk. I could not visualize it, so I went online to see what it looked like. Then I couldn’t imagine what it would feel like, especially for someone who always wants to be near water rather than in it.

The pool was enormous to my water walking pool virgin eyes. There were shady parts and sunny parts. Uh-oh, I was going to have to get a hat with a bigger brim to protect my neck and shoulders from the sun, too. Oh, and water soluble sunscreen.sun hat

I couldn’t make sense of the arrows on the pool floor and the curvy shoulder high dividing walls between lanes until I was actually in the pool. I started out in waist high water following the arrows and keeping in the lanes they pointed to on different sides of the dividers until I found myself in chin high water when we completed our first circuit.

water walkingNow it all made sense. It was just like traffic lanes and directional markings on the road when you drive! Of course, waist and chin high are relative. I’m 5’5’, so Bear’s 5’10” meant the water was not as high on him.

There’s another benefit to water walking if you have arthritis. You’ve read my complaints about arthritis here and even in the Wall Street Journal column by Laura Landro about CKD Awareness activists (I still prefer being called an advocate). If you missed it, you can read that article in the January 20th, 2014 blog.

I went to the site of The Arthritis Foundation at http://www.arthritistoday.org/what-you-can-do/staying-active/activity-types/water-walking.php and read the following:

“Like all water exercises, water walking is easy on the joints. ‘The water’s buoyancy supports the body’s weight, which reduces stress on the joints and minimizes pain,’ says Jones [an aquatic coordinator]. ‘And it’s still a great workout. Water provides 12 times the resistance of air, so as you walk, you’re really strengthening and building muscle.’ You do not bear weight while swimming and walking, however, so you’ll still need to add some bone-building workouts to your routine.”

My almost constantly complaining knees were quiet in the water walking pool. My slightly painful hip didn’t seem to hurt. And, best of all, my elbows weren’t aching. I’m sold. What makes it even better is that water walking strengthens your muscles.

The bottom of the pool is purposely rough to prevent slips. After one circuit without water shoes, I knew I’d have to get some. While they were not severely damaged, I did notice annoying little scraps and cuts on the soles of my feet, especially my toes.water walking shoes

That probably means I was walking on my toes, something the Mayo Clinic at http://www.mayoclinic.org/healthy-living/fitness/multimedia/aquatic-exercise/sls-20076730 suggests you NOT do.

“In water that’s about waist-high, walk across the pool swinging your arms like you do when walking on land. Avoid walking on your tiptoes, and keep your back straight. Tighten your abdominal muscles to avoid leaning too far forward or to the side.”

I’ll also have to work on tightening my abdominals since I walked into the wall or the dividers a few times. I knew I wasn’t drunk (I don’t drink), so now I know why this happened.

A non-medical site, Ask.com, had some information about how you can water walk in any water. After all, not everyone has access to a water walking pool.

• Walk forward and backward with short steps, long steps, average steps, or step kicks.

• Move in a pattern of a circle or square. Be sure to go in both directions to balance the demands on your body.

There are more suggestions about technique at their site: http://spas.about.com/od/exercise/a/waterwalking.htm

SlowItDown business card

The big news here these days is that SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease are combining their Facebook and Twitter accounts. When you want to catch up with SlowItDown, just go to What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Facebook and Twitter accounts. There will still be a daily tidbit about our disease on both. It occurred to me that I was doing double duty (Say that three times fast!) since both deal with the same issue.

Until next week,
Keep living your life!

Higher and Higher

Today we start off with an announcement:  What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s profits have offset the cost of 2011’s donations of itself! That is not bragging about earnings, but rather an indication of just how many books were donated that year.Book Cover

And just why is that important to anyone but Gail, you ask.  Remembering my passion is to get the information about CKD out to the public, you’ll be able to see the connection after reading this:

“That guideline {e.g. providing a common language for communication among providers, patients and their families, investigators, and policy-makers and a framework for developing a public health approach to affect care and improve outcomes of CKD} led to a paradigm change in the approach to CKD, shifting from an uncommon disease often culminating in kidney failure and treatment by nephrologists to a common condition leading to death from cardiovascular disease. As a result, CKD is now accepted as a worldwide public health problem and the global guideline was developed to address this issue.”

This quote is from Andrew S. Levey, MD, co-chair of the NKF KDOQI workgroup that developed the 2002 CKD Guideline and Dr. Gerald J. and Dorothy R. Professor of Medicine at Tufts Medical Center in Boston.

NKF-logo_Hori_OBYou can probably figure out that NKF is the National Kidney Foundation, but you might need a little help with KDOQI.  That’s the acronym for their Kidney Disease Outcomes Quality Initiative.

2002 was a long time ago, but this statement was issued on December 27th, 2012, which was the night before the release of Kidney Disease: Improving Global Outcomes (KDIGO).

By the way, many thanks to the National Kidney Foundation for each time they’ve asked me to write for them, suggested my name for articles about kidney disease awareness advocates, or offered me suggestions.

I’ve freely quoted from their page: http://www.kidney.org/news/newsroom/nr/Updated-CKD-Guideline-Enable-Physicians-Predict-More-Accurately.cfm, and yet, there’s even more information there.  Take a look for yourself.

So, CKD is now a common disease. And many people suffering from it die of cardiovascular disease. And hypertension can lead to that… and CKD.  Seems pretty circular.

Back to basics.  Hypertension or high blood pressure is defined on page 132 of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease:

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

blood pressure 300dpi jpg

Now, about that 140/90…. According to the National Institutes of Health‘s National Heart, Lung, and Blood Institute at http://www.nhlbi.nih.gov/health/health-topics/topics/hbp/printall-index.html, as of January, 2014,

“If you have diabetes or chronic kidney disease, a blood pressure of 130/80 mmHg or higher is considered HBP.”

Not only that, but blood pressure can change depending upon the arm that is being used to measure it, the time of day, whether you’ve just smoked (Just don’t!), had a cup of coffee or eaten just prior to the test, even if you’ve just woken up.  We all know what worry or stress can do to your blood pressure.  It seems even your race can make a difference.

_68045928_picture1A little less than a year ago, a team at London University College developed a wrist sensor to measure blood pressure as the blood leaves the heart itself. They discovered that blood pressure does not drop as much as thought during the night and that it might be possible to predict heart disease by using this monitoring.

I was particularly interested since I have a wrist monitor that my PCP (primary care physician) prefers I not use, thinking the measurement of the blood passing through the arm arteries more accurate.  I’d originally thought this was a wrist monitor but it doesn’t measure the blood flowing through the wrist.  This was a surprise to me and one I’d like to follow closely.  If you’d like to, also, take a look at http://www.bbc.com/news/health-22812477

The Centers for Disease Control and Prevention provides a chart that makes clear why Blacks (or African Americans as they are referred to in the chart) are at 3.5 times the risk of CKD.  Look at the numbers, ladies and gents.  Hbp {high blood pressure} is the second leading cause of CKD. As usual, there’s so much more information about high blood pressure on their page: http://www.cdc.gov/bloodpressure/facts.htm.

Race of Ethnic Group Men (%) Women (%)
African Americans 43.0 45.7
Mexican Americans 27.8 28.9
Whites 33.9 31.3
All 34.1 32.7

 

 
 
   
   

It’s common knowledge that exercise can lower blood pressure, but how many readers know that it can also make your blood pressure medication more effective? On 4/23 of last year, The American Heart Association issued this statement:

“Alternative therapies such as aerobic exercise, resistance or strength training and isometric hand grip exercises could help people reduce blood pressure. Biofeedback and device-guided slow breathing reduced blood pressure a small amount. Due to their modest effects, alternative therapies can be used with — not as a replacement for — standard treatment.”

Rae%208x10%205792%20Sepia%20TinType[1]Oh, so that’s why I didn’t give away the isometric hand grips when we gave up 1880s competitive shooting.  Good for the trigger finger, just as good for the blood vessels – with proper medication.

Wait a minute.  Both the United Kingdom and the United States have populations with almost a third of the people suffering high blood pressure. Think about this.  What could this mean?

I don’t know if it’s because I’m getting older or not, but life seems to be moving so fast these days.  First there was Passover, then Easter, now Mother’s Day coming up with Father’s Day soon to follow and all those lovely birthdays and anniversaries in between.  How much stress is this?  How much stress is getting ready for your vacation?

No, I’m not saying these occasions should be ignored to lower our blood pressure.  I am saying we are the ones in control of how we treat these occasions.  Are they going to be occasions of stress?  Or gatherings with joint efforts and a relaxed delight in seeing the people involved? {And now you know why our wedding invitation – which I wrote – refers to me as “the Former Wannabe Hippie.”}

Happy Mother’s Day to all those who are mothers, wish they were, have mothers, or ever even remotely considered motherhood – male moms included.Mother's Day 2012  And what better gift for the mom in a family that has a CKD sufferer than…

Until next week,

Keep living your life!

March and National Kidney Month are Hare, I Mean Here.

My wake up alarm is the song ‘Good Morning,’ and that’s exactly what this is.  The sun is out, it’s warm but not hot, I’m listening to some good music, and I’m alone in the house for the first time since Bear’s October surgery.  I am thankful that he is driving himself to his doctors’ appointments. That is progress!   desktop

Talking about progress, it’s National Kidney Month and you know what that means… a recap of many of the organizations listed in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease that may help with your Chronic Kidney Disease.  Ready?  Let’s start.

{I’m only including online addresses since this is on online blog.}

 

American Association of Kidney Patients (AAKP) 

https://www.aakp.org

MARCH IS NATIONAL KIDNEY MONTH (from AAKP’s website)

This is an advocacy group originally started by several dialysis patients in Brooklyn in 1969.  While they are highly involved with legislation, I see their education as the most important aspect of the group for my readers.

“Take some time and browse through our educational resources including our Resource Library that contains past and present published information from the American Association of Kidney Patients. Educate yourself on specific conditions, medicine, lifestyle improvement and get the latest news and information from the renal community.”

kidney-month-2014-v1  The American Kidney Fund

     http://www.kidneyfund.org/

While they work more with end stage Chronic Kidney Disease patients, they also have an education and a get tested program.

“The mission of the American Kidney Fund is to fight kidney disease through direct financial support to patients in need; health education; and prevention efforts.”

National Kidney Disease Education Program

www.nkdep.nih.gov

This is an example of the many videos available on this site.  They are also available in Spanish.

What is chronic kidney disease? Approach 1 A doctor explains what chronic kidney disease (CKD) is and who is most at risk. Learn more about diabetes, high blood pressure, and other kidney disease risk factors. Length 00:53  Category CKD & Risk

One of my favorites for their easily understood explanations and suggestions.  Their mission? “Improving the understanding, detection, and management of kidney disease.”  They succeed.

National Kidney Foundation

www.kidney.org

http://www.youtube.com/watch?v=s2U2iZQxkqI#t=1 (This is the link to their National Kidney Month Rap with Sidney the Kidney)

I have guest blogged for them several times and been glad to work with them whenever they need me.  The website is thoroughly helpful and easy to navigate. This is what you find if you click on ‘Kidney Disease’ at the top of their home page. What I really like about this site is that it’s totally not intimidating.  Come to think of it, none of them are, but this one feels the best to me.  (I can just hear my friends now, “Oh, there she goes with that spiritual stuff again.”  One word to them: absolutely!) Notice the Ask the Doctor function.

National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC)

www.kidney.niddk.nih.gov  National Institute of Diabetes and Digestive and Kidney Diseases Logo.

“Just the facts, ma’am,” said Sergeant Friday on an old television show and that’s what you get here.

This is their mission statement:

The National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the National Institutes of Health of the U.S. Department of Health and Human Services.

Established in 1987, the Clearinghouse provides information about diseases of the kidneys and urologic system to people with kidney and urologic disorders and to their families, health care professionals, and the public. The NKUDIC answers inquiries, develops and distributes publications, and works closely with professional and patient organizations and Government agencies to coordinate resources about kidney and urologic diseases.

And let’s not forget

 Renal Support Network

www.rsnhope.org

This was initiated by a Chronic Kidney Disease survivor.  The part I like the best is the Hopeline.  While I have not called myself, I have referred people who were newly diagnosed and, well, freaking out.  I couldn’t tell them what the experience of dialysis is like, but these people can.

Renal Support Network (RSN) is a nonprofit, patient-focused, patient-run organization that provides non-medical services to those affected by chronic kidney disease (CKD)….  Call our Hopeline (800) 579-1970 (toll-free) Monday through Friday from 10am to 6pm (PT) to talk to a Person who has lived kidney disease.

Baxter Healthcare Corporation.

http://www.renalinfo.com/us

“… web site designed and developed to provide information and support to those affected by kidney failure. Renalinfo.com is supported through and educational grant from Baxter Healthcare Ltd, a company that supplies dialysis equipment and services to kidney patients worldwide.

They have all the information a newly diagnosed CKD patient could want and, while funded by a private company, do not allow paid advertisements.  Their site map is proof of just how comprehensive they are.

While many of the other sites offer their information in Spanish as well as English, if you click through the change language function here, you’ll notice there are many languages available.

Rest assured that these are not the only organizations that offer support and education.  Who knows?  We may even decide to continue this next week, although that’s so close to March 13th’s World Kidney Day that we’ll probably blog about that for next week.

I interrupt myself here to give you what I consider an important commercial message.  Remember that game I play about using the money from the book to pay off what I paid to produce the book so I can put more money into donations of the book?  There was a point when sales covered the cost of publishing.  Now they’ve covered the cost of digitalizing the book so it could be sold as an e-book.  Another milestone!  (Now there’s just about $15,000 worth of donations to pay off.)54603_4833997811387_1521243709_o

While I’m at it, I find I cannot recommend Medical Surgical Nursing: Critical Thinking for Collaborative Care, 4th Ed. but only because it was published in 2002.  The world of nephrology has changed quite a bit since then and continues to change daily. While I enjoyed the information, I’m simply not convinced it’s still applicable.

For those of you who are newly diagnosed, I sincerely wish these websites give you a starting point so you don’t feel so alone. (I’m sorry the book isn’t interactive.)

Until next week,

Keep living your life!

I Feel Like a Heel

I do.  And I have for months.  But I didn’t want to have this checked for months. I’m writing about what turned out to be plantar fasciitis, an inflammation of the connective tissue which supports the arch of the foot and is located between the heel and the ball of the foot. It is caused by small, repetitive trauma to this area.  It almost sounds like carpal tunnel of the foot.  I am being humorous here; don’t take that seriously.

When this first showed up, Bear and I jokingly decided at least one of us should be able to walk. While he’s definitely healing, he’s still wheelchair bound (which is the better than the bed bound that he was for the first GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBkmonth after surgery… got to look on the bright side) after incurring a non-displaced fracture in the same foot  he had the surgery on.  His three fused joints and torn ligament in that foot were halfway healed at that point. Luckily, the metal in there was not damaged in the fall that caused the broken bone.

I had a referral for a podiatrist from my primary care doctor and I sat on it, until I realized that was what I was doing. I shook my head, took a deep breath, and made the call for an appointment.  I’m glad I did.  My fear had been that I would need surgery on the bone spurs in my heel.  Bear and I may have been joking, but I really did – and do – feel I need to be able to walk until he can.

Plantar fasciitis has nothing, I repeat nothing, to do with the bone spurs in my case  – although they can be a risk factor.

According to Beth Israel Deaconess Medical Center at http://www.bidmc.org/YourHealth/Conditions-AZ/Chronic-kidney-disease.aspx?ChunkID=11621

Plantar fasciitis is most common in people who are 40-60 years old. (How kind of my body to wait the extra seven years.)

Other risk factors that increase your chance of getting plantar fasciitis include:

Physical exertion (like wrestling a wheelchair in and out of the car or pushing it uphill?), especially in sports such as:

Running

Volleyball

Tennisimages (1)

A sudden increase in exercise intensity (Yeah, it’s got to be that Olympic sport of wheelchair wrangling) or duration

Physical activity that stresses the plantar fascia

People who spend a lot of time standing

A sudden increase in activities that affect the feet

Obesity or weight gain (Ummmmm)

Pre-existing foot problems, including an abnormally tight Achilles tendon, flat feet, or an ankle that rolls inward too much

Poor footwear (Ack!  Grew up with that and overcompensated with exactly the wrong kind of shoes as an adult.)

Heel spurs (Luckily for me, not in my case)heel spur

Agave Foot Specialists, the podiatrists I chose, are treating it with rest – one of the hardest things for me to do, even in my ‘retirement.’ When I explained that I needed to exercise at least half an hour daily for the Chronic Kidney Disease, they amended that to using the stationary bike (Well, they gave me a handout that included cross-training.  I wasn’t sure what that was, but I’m good at asking.) It almost felt good to get back on the bike this morning.

They also suggested swimming (Moi?  With my aversion to being in bodies of water?), certain kinds of yoga, and certain kinds of weight training.  I’ll stick with the stationary bike, thanks.

But that, of course, is not all.  I already messed this one up by misreading, but I’ll do it right tonight!  I’m to freeze a sports bottle (still not sure how that’s different from a regular bottle) and roll it over my arch for 20 minutes every evening.  Not bad, I can read while I do that… I think.

I also need to stretch my calf multiple times a day.  That’s not hard to do.  Remembering to do it is the hard part.

Here’s the kicker (ouch!): I have to wear shoes that meet the following criteria:

A firm heel counter.  I had to ask look that up.  I found this definition at http://shoesglossary.com/heel-counters, “A piece of leather forming the back of a shoe or boot. A heel counter may be used to stiffen the material around the heel and to give support to the foot.”  Oh no, that means I just bought two pair of shoes that won’t do since they’re sandals and have no heel counter.

A rigid shank (the part of the shoe between the inner and outer soles).  Now you see why I bought those two pair of shoes.

A flexible toe.  At least I got that part right.

Give me two weeks and I’ll be able to tell you whether I have a handle on the plantar fasciitis or not.

Kidney Book CoverMy dear friend and neighbor, Amy, just came in for our occasional coffee klatch.  While we were talking I told her about SlowItDown’s new website.  That was news to her.  Since she reads the blog religiously, it’s probably news to you, too.  Have a gander.  The address is http://www.gail-rae.com.  Suggestions and comments are welcome, as usual! Don’t forget to tell us which communities you’d like us to contact.

It also came up in conversation that I never told anyone that I’ve had a Certificate of Completion in Perspectives in Adherence from The American Kidney Fund since 11/09/11.  So, I do have some training concerning Chronic Kidney Disease other than my experience as a patient and my research, but I am STILL not a doctor.  Anything you read on the blog, Facebook page, or Twitter that I’ve written STILL needs to be run by your nephrologist before you heed that advice.

I’m taking a class at Landmark. Aren’t I always? At the last class meeting, one of my classmates asked me to tell her the story of how the book came to.  I realized I haven’t discussed the book on the blog in ages. Do take a look on Amazon.com or B&N.com to read the description and order a bunch.  Be wary of textbook companies that offer to rent you the book for most than it costs to buy it ($12.95) and remember the e-book is less expensive at $9.95.  Amazon has a wonderful program by which you can order a print book – or if you have ever ordered a print book – you can order the e-book at a 70% discount.  Another terrific way to save some money is to join with a friend and pool your order for that Amazon discount.

Time to go meet my step-daughter’s sweetie’s family!

Until next week,Book Cover

Keep living your life!

I’m Tired.

baby-shots-5I’m tired.  I’m almost always tired.  That is my most prevalent complaint lately.  And why?  Because I have Chronic Kidney Disease, Stage 3A. I thought I remembered this particular symptom doesn’t appear until dialysis starts – at stage 5 – so I decided to re-research my research… and surprised myself with the results.

Just in case you don’t remember, I retired from teaching at the community college last February (right after my 66th birthday) and from acting a month later. Two careers down and a year older, I’m still tired. True, I do blog every week and work on SlowItDown.  However, it’s still two careers down.

I was becoming concerned.  According to Donna D. Ignatavicius, MS RN, and M. Linda Workman, Ph.D, authors of Medical-Surgical Nursing: Critical Thinking for Collaborative Care, I shouldn’t be.  They explain that patients with early symptoms of chronic renal failure may complain of a general feeling of illness and that lack of energy and fatigue are often reported without any identifiable cause.

By the way, the book is available on Amazon, but I cannot recommend it yet since I just ordered it.  More on that after I read it. Okay, so maybe my CKD hadn’t advanced and maybe I hadn’t developed diabetes. Maybe it was just the stage of CKD I was in.

I wanted to check with my old standby, The Mayo Clinic.  Their website told me: “Signs and symptoms of kidney disease may include:Location of Kidneys

  • Nausea
  • Vomiting
  • Loss of appetite
  • Fatigue and weakness
  • Sleep problems
  • Changes in urine output
  • Decreased mental sharpness
  • Muscle twitches and cramps
  • Hiccups
  • Swelling of feet and ankles
  • Persistent itching
  • Chest pain, if fluid builds up around the lining of the heart
  • Shortness of breath, if fluid builds up in the lungs
  • High blood pressure (hypertension) that’s difficult to control”

You can read more about these symptoms at: http://www.mayoclinic.org/diseases-conditions/kidney-disease/basics/symptoms/con-20026778

Wait a minute!  Where in heaven’s name was loss of appetite when you needed it!  Here I am with CKD, aging, exercising, following the renal diet, and not losing weight. I realize that sounds pretty shallow.  Let me explain.  My weight has always been a problem.  I’m not saying I WANT another symptom of CKD, but since I have CKD anyway, I would have preferred that symptom.

hiccupsI also had never questioned why I have hiccups so often.  Bear thought it was that I ate too fast, so I slowed down. (Hey, almost 45 years of running up to the fourth floor cafeteria, waiting in line, and then bolting down your food so you can get to the restroom and drop off your reports in the office three flights back down before teaching your next class doesn’t dissipate that quickly.  Long term habits….)

And why is fatigue a symptom of CKD in the first place?  I found the following at: http://www.kidneyabc.com/ckd-treatment/991.html (Which looks like it might just be a Chinese herbal site; it wasn’t quite clear.): “Fatigue in CKD (Chronic Kidney Disease) is most often caused by anemia in which the count of red blood cells are lower than normal. As red blood cells distribute oxygen to body tissues and cells, a shortage of oxygen can cause fatigue. Anemia begins in early stage of CKD, and tends to get worse as renal function decreases and less erythropoietin (EPO) is produced by kidneys.”

new blog shotThis is something that I explained in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease. I’ve been diagnosed with non-anemic low iron levels. Well, it’s nice to know I’m not anemic, but the low levels of iron produce the same fatigue. Why?

The National Kidney and Urologic Diseases. Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf 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 kidney, however, often don’t make enough EPO. As a result, the bone marrow makes fewer red blood cells.”

You can’t correct it by simply taking EPO injections.  It’s just not that simple.  To quote what I wrote in my book, “…EPO can worsen your HBP – which can both cause and be caused by CKD.  Most nephrologists agree it’s better to take the EPO injections and increase your HBP medication to control your hypertension. “

That was thought to be true when I researched for the book over three years ago, but since then the medical science community has discovered that synthetic EPO may be harmful to your body in that it may cause the body to produce antibodies for EOP.  Then your liver becomes involved, too, since it produces a small amount of EPO.flu

So, what can you do for this fatigue?  I went to the same Chinese herbal site because their recommendations were simply so logical.

“Regular exercises have many benefits for stage 3 CKD patients:

Boost your energy.

Improve your immune system.

Alleviate edema.

Lower high blood pressure.

Aerobic exercises such as walking, jogging, dancing, swimming, etc. are preferred. And remember to avoid strenuous exercises.”

How can you argue with that?  I couldn’t, especially since dancing is included!

happy birthdayThank you all for your birthday wishes.  I like to respond to each of you individually and hope I haven’t missed anyone.  Let me know if I have. It was a lovely day with the kids, and neighbors helping me celebrate, as well as my long distance friends emailing, snail mailing, Facebook inboxing, and texting.  I truly feel cherished by those in my communities.

I also believe I’ve gotten across to the French division of Amazon by writing in English and letting them translate it instead of giving in to my own misguided insistence upon using my fractured French.  Take a look for yourself by going to Amazon’s website, scrolling down to the bottom of the page where the different countries of operation are listed, hitting France, and inputting the title of the book – in English.

I’m tired… time to take a rest.

Until next week,

Keep living your life!

Book It!

With the holidays over and more time to think about what I’d like to write, I decided this would be a good time to update you about whatever other books are available that also concern Chronic Kidney Disease.

You know there are many out there, too many to mention here, so I eliminated any book that couldn’t be understood by a lay person (those without specific training in a certain field – in this case, medical) and renal diet books.  You can easily find those for yourself by going to Amazon.com and B&N.com. I also excluded those I found to be dubious… the spelling errors were a dead give-away that these were not professional.

I’m not going to tell you about What Is It And How Did I Get It? Early Stage Chronic Kidney Disease since you already know about it from this blog.  Let’s change that, I will tell you one or two things.  First, the books included in ‘Additional Resources’ (Chapter 13) won’t appear here, as good as they are.Book Cover

And – pay attention – students, be aware that both Campus Book Rentals and Chegg are attempting to rent the book to you for more than it costs to buy it.  The digital edition – when I was teaching college, my students always seemed to prefer the digital edition – is even less expensive.

Don’t forget about The KindleMatchBook program which allows you to buy the digital version at 70% discount if you’ve ever bought the print copy. Gather your classmates: pool your money so you can save. One of you buy the print edition, then the others can get the digital edition at deep discount (I have no idea why, but I love that phrase).

Disclaimer:  I am not a doctor, have never have claimed to be one , AND am not endorsing the following books, simply letting you know they exist. For the most part, the descriptions were written by the author. The ‘Look Inside!’ function only works if you follow the link to Amazon.com – sorry! I have been dreaming about this list, so let’s get it out of my dreams and on the blog:

510smylYevL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Ford, Mathea A., RD (Registered Dietician) Kidney Disease: Common Labs and Medical Terminology: The Patient’s Perspective (Renal Diet HQ IQ Pre-Dialysis Living) (Volume 4)

New to kidney failure? Have no idea what your physician just said about your kidneys? Kidney disease labs and terminology can quite often be a challenge to understand and digest. Did your doctor use the “stages of kidney disease”? Did you physician refer to “eGFR”? What does all this mean for your health and future with kidney disease, lifestyle and nutrition choices. This book is the basic platform for understanding all the common labs and terminology that your doctors and nurses will use. This book with give you and your caregivers the confidence to manage your condition knowing that you have an understanding of all the ins and outs of the nephrology jargon. (Mrs. Mathea seems to have an entire series of books about CKD.)

Hunt, Walter A. Kidney Disease: A Guide for Living. 

When Hunt learned he had kidney disease, he was overwhelmed by the prospect of facing kidney failure. He had so many questions: Why are my kidneys failing? Is there anything I can do to save them? How will I know when my kidneys have failed? What will it feel like? 41nNk5SdqIL._AA160_What treatments are available for me? Is there a cure for kidney failure? The good news, as Hunt found out, is that kidney failure is highly treatable. People with the disease can lead full and productive lives, and Hunt’s readable and empathetic book will help them do just that. It discusses the latest scientific and medical findings about kidney disease, including what kidneys do; the underlying diseases that cause failure; diagnosis, treatment, and prevention; dietary factors; clinical trials; and the future direction of research on kidney failure. Kidney disease is difficult, but as Hunt’s narrative reveals, people living with it can take control of their health and their future. By understanding kidney failure — what causes it, how it may affect their lives, and what treatment options they have — people with the disease can improve their quality of life and achieve the best possible outcome.

51nUIkG8kSL._AA160_Lewis, Dr. Robert. Understanding Chronic Kidney Disease: A guide for the Non-Specialist.

This is meant for primary care physicians, but can be easily understood by the layman. I looked under the covers of this one and was delighted to see that the information we, as patients with CKD, need to know is also what our primary care physicians need to know. (I wrote this description.)

National Kidney Foundation of Southern California. Living Well With Kidney Disease.

The first edition of “Living Well With Kidney Disease” was developed and published by the National Kidney Foundation of Southern California. Based on the handbook “When Your Kidneys Fail” (originally published in 1982), this new and 41jxZoYLGzL._AA160_updated edition provides detailed information specifically intended for people coping with Kidney Disease and other renal failure, as well as their friends and families. The question and answer format provides a clear and manageable guide for those seeking support and answers. Among the topics covered are the principles of kidney function, methods of treatment, transplantation, and financial resources available to patients. With all of the ramifications of kidney failure and the rise of Chronic Kidney Disease and Type 2 Diabetes, there is a growing population of people afflicted with kidney failure. Although it was written with the patient in mind, family members, friends and health care professionals will also find this handbook a valuable resource.

517GaXFXNPL._SL160_PIsitb-sticker-arrow-dp,TopRight,12,-18_SH30_OU01_AA160_Synder, Rich DO (Doctor of Osteopathic Medicine) What You Must Know About Kidney Disease: A Practical Guide to Using Conventional and Complementary Treatments

The book is divided into three parts. Part One provides an overview of the kidneys’ structure and function, as well as common kidney disorders. It also guides you in asking your doctor questions that will help you better understand both status and prognosis. Part Two examines kidney problems and their conventional treatments. Part Three provides an in depth look at the most effective complementary treatments, from lifestyle changes to alternative healing methods. The diagnosis of kidney disease is the first step of an unexpected journey.

*Yes, this is the same Dr. Rich Snyder who interviewed me on his radio show twice since What Is It And How Did I Get It? Early Stage Chronic Kidney Disease was published.

It’s always hard to find good books about CKD that non-medical personnel can understand.  I hope this four (and mine!) help you feel more comfortable and knowledgeable about your diagnosis.

Here’s a little hint about your own health.  I’m back to no sweets or desserts and, I hate to admit it, but I’m feeling better.  Don’t you just hate when that happens?sugar

Until next week (when I’ll in in Culver City for a weekend of Landmark),

Keep living your life!

‘Twas The Night Before The Night Before Christmas

Christmas Tree’Twas the night before the night before Christmas and all through the house…. The night before the night before Christmas?  Where did the time go? Hmmmm, there are no children here to constantly remind us Christmas is coming.  We rarely watch television (although we often watch movies), so we didn’t see the ads that could have reminded us.  Oh, I did know it was coming… just not so quickly.

And that’s often the case when we deal with a chronic illness.  We know that doctor’s appointment is coming up and we’re eager to see the results of our blood tests.  After all, we’ve worked so hard on diet, exercise, sleep, and lack of stress (that’s funny: stressing for lack of stress).  We just didn’t know it was coming so quickly. Did we have enough time to lower our blood pressure?  Was it enough time to lose some weight?  Did we monitor our eating enough in this amount of time that our cholesterol numbers are down?  Time, time, time.  It all comes down to time.

I have a modest proposal (apologies there, Mr. Swift).  What if we ignore time and just always – okay, almost always – watch the diet, exercise, sleep enough, and avoid stress.  Oh right, that’s what we’re supposed to be doing: lifestyle changes.NAFLD

According to an article published in the European Journal of Social Psychology way back in September of 2009, it takes an average of 66 days to form a new habit. The article was written by Phillippa Lally and her colleagues from the Cancer Research UK Health Behaviour Research Centre based at UCL Epidemiology and Public Health, and was based on their research.  You can find more at: http://www.ucl.ac.uk/news/news-articles/0908/09080401

Since it’s habits that form your life style, I had trouble accepting that number so I kept researching.  Ugh, I kept coming up with the same number although one analysis of this same article did mention that it can take as few as 18 or as many as 254 days to form a habit depending upon the individual.  I’ll take the 18 days option, please.

All right, let’s try something else.  How about getting enough sleep.  How much sleep is enough sleep anyway?  According to Dr. Timothy Morgenthaler on the Mayo Clinic site (http://www.mayoclinic.com/health/how-many-hours-of-sleep-are-enough/AN01487), 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.

Victorian clockThose first two weeks after Bear’s surgery when I was his caretaker, I rarely enjoyed more than two hours of sleep at a time and there seemed to be no difference between day and night.  I’m not saying this would be true for everyone, but we paid for it dearly.  I ended up in the emergency room needing a breathing treatment to relieve the bronchial symptoms that were making it so difficult to breathe and I just may have brought home a virus for Bear who soon started running a high fever. We were both run down from lack of sleep.  Of course, Bear was already in recuperative mode, but we proved to me how very important sleep is.

When I was first diagnosed with Chronic Kidney Disease almost six years ago, the value of exercise was brought home again and again by my nephrologist.  Until I researched for What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wasn’t clear about why this was important.  This is what I discovered:

I knew exercise was important to control my weight.  It would also improve my blood pressure and lower my cholesterol and triglyceride levels. The greater your triglycerides, the greater the risk of increasing your creatinine.  There were other benefits, too, although you didn’t have to have CKD to enjoy them: better sleep, and improved muscle function and strength. But, as with everything else you do that might impinge upon your health, check with your doctor before you start exercising.

I researched, researched and researched again.  Each explanation of what exercise does for the body was more complicated than the last one I read.  Keeping it simple, basically, there’s a compound released by voluntary muscle contraction.  It tells the body to repair itself and grow stronger. The idea is to start exercising slowly and then intensity your activity.exercising silhouette

Okay, so we know during that 66 days to form a habit, seven to eight hours a night of sleep is one of the habits we should be forming and half an hour of exercise daily is another.  Might as well throw in following the renal diet and avoiding stress as two other habits to get into.  However, considering how long this blog is already, those are topics for another blog.  Who knows?  Maybe even next week’s blog.

KindleAmazon is offering the book in many different countries as well as ours.  It’s also offering the Kindle MatchBook in each of these countries.  Remember?  That’s the program that allows you to buy the digital edition at a 70% discount if you’ve EVER bought a print copy of the book from them.  Why mention it yet again?  It just occurred to me that you can gift the newly diagnosed, their friends and/or family in many different countries! And for those who asked, yes, the book is available on B&N.com, but their digital reader is The Nook, not the Kindle, so there’s no MatchBook discount program on this site.

May you have a Merry Christmas and a Happy Kwanzaa if those are the holidays you celebrate.  Oh my!  Just one more 2013 blog. I think I’ll go back to the earliest ones from this year to see how varied they are.  I’ll bet there’s more than one about the health benefits of coffee.Book signing

By the way, there has been some controversy about the authorship of the poem from which I played upon for the title of this blog, but I’m more than willing to accept Clement Moore as the author of “ ‘Twas The Night Before Christmas.”

Until next year,

Keep living your life!

SlowItDown

I’m so involved with kidney projects that sometimes I forget other people – like readers – are not necessarily on the same page with me (like that writers’ turn of phrase?).  Luckily, people are not afraid to ask me what I’m talking about… and that’s exactly why this week’s blog is about SlowItDown.

Let’s start with the press release; that should introduce the project well:

 SlowItDown                                          CKDed@cox.net                                                            602-509-4965

kidney-book-cover

Chronic Kidney Disease is on the rise.  One of nine people in the mainstream has it and may not even know.  Blacks, Hispanics, Asians, and Native Americans have a much higher incidence of the disease in their communities. This disease cannot be cured, but it can be slowed down if you’re educated to do so.

SlowItDown is the product of a project created by Gail Rae-Garwood when she participated in a Landmark Worldwide leadership program. Landmark is a training and development company known for their flagship course The Landmark Forum (www.landmarkworldwide.com).

The project provides trained Chronic Kidney Disease educators from KidneySmart on a monthly basis at no cost to any community that needs it within the United States.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of communities possible.

Ms. Rae-Garwood said, “I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I’ve written a book (What Is It and How Did I Get It? Early Stage Chronic Kidney Disease available at Amazon.com and B&N.com) so Chronic Kidney Disease patients can see how to manage their disease. I have a Facebook page, twitter account, and blog of the same name to disseminate information, but these still aren’t enough. Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to the communities that need it. “

I may have mentioned a time or two that SlowItDown is now educating in the Salt River Pima – Maricopa Indian Community right here in Arizona.  We are also working with both the Burmese and Chinese communities locally in an effort to bringing the class to them.  An upcoming Wall Street Journal article about activists for their illnesses will include SlowItDown (and me!).  We’re getting the word out there, just too slowly for my taste.  Notice the address and phone number on the press release if you’d like SlowItDown to bring this education to your community or another you know needs the information.Salt River Great Seal

The following is SlowItDown’s proposal:

Chronic Kidney Disease is increasing at amazing speed. All aspects of the population are being diagnosed with this disease. Almost 59% of the U.S.A.’s population is expected to have it soon.

While Chronic Kidney Disease is not curable, the progress of the decline in kidney function caused by this disease can be slowed down.  But people need to be educated that this disease exists, how to be screened for it and then how to manage it so that they are not immediately on dialysis or at death’s door.  People can live for decades with Chronic Kidney Disease if they know how to manage it.

SlowItDown can provide trained Chronic Kidney Disease educators on a monthly basis at no cost.  All the educators need is a place to hold their classes and permission to do so.  This is a self-sustaining program designed to reach the largest number of people possible.

The educators will teach the basics, such as: what Chronic Kidney Disease is, how you get it, what the screening process is and – most importantly – how you slow down the progress of the disease via diet, medication, exercise, and weight control.

I am also a Chronic Kidney Disease patient who just happens to be a non-fiction writer.  I can easily mail you a copy of my book so you can see for yourself how Chronic Kidney Disease patients can manage their disease.  I have a Facebook page, twitter account, and blog of the same name (What Is It And How Did I Get It? Early Stage Chronic Kidney Disease) to disseminate information, but these aren’t enough.

Chronic Kidney Disease is serious… and I’m serious about getting the necessary education to everyone who needs it.  SlowItDown now has its own Facebook and Twitter accounts, too.

We’re presently educating in the Salt River Pima – Maricopa Indian Community. With both the local Chinese and Burmese communities getting ready for this education.  You don’t have to be a member of a high risk group for this free education.  Although, sometimes all you have to do to be a member of a high risk community is be over 60 … like me.

Notice there’s even more information in it.  It’s beginning to make sense to me to reprint here  – in the blog – articles I’ve written about CKD.  I notice that each one has a little more or different information.  Keep checking SlowItDown and What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Twitter and Facebook pages for tidbits about our disease and other interesting medical information that just might pertain to us.

Book CoverTalking (okay, writing) about the book, I just realized it’s for sale in the United Kingdom, Australia, Brazil, Canada, China, France, Germany, India, Italy, Japan, Mexico, and Spain.  Thank you, Amazon.com!

It’s the holiday season.  What better time to talk (I know, I know: write) about Amazon’s Kindle MatchBook program, not that you haven’t read it here before.  Here’s the part I like – if you have EVER bought a copy of the print book, you are eligible to buy the digital book at 70% off.  Gift a newly diagnosed patient or his/her family and friends with knowledge about this disease.  I know that’s what helped me cope during that panicky time when it was all so new to me.

Personally, we have a lot to be thankful for.  Bear’s cast is off after six weeks as of this morning, neither he nor I have any lingering effects of the bronchitis for me/viral infection for him, our children are all healthy, our two almost son-in-laws are exactly who we would have chosen had we any say in the matter (Hah!), and we are looking forward to when he (Bear) can walk again.

I intend to have a banner week!  Join me?

Until next week,

Keep living your life!

Spurs in Arizona

Of course there are spurs in Arizona, you may find yourself thinking… and you’re right. Both kinds are in abundance here.  Both kinds?  Sure, the ones you wear on your boots and the ones you wear in your boots, actually inside your foot. cowboy boots

I recently had pain in my heel and figured it was just another sign that I’m growing older (funny, I do that every year).  When I casually mentioned this to my ever vigilant primary care doctor, Helen Zhao of Deer Valley Family Practice, she pounced.  She’s so good at that and since she’s the one who uncovered my Chronic Kidney Disease, I listen when she pounces.

An order for three different foot x-rays revealed a formerly broken little toe (Judo pre-pregnancy 33 years ago), osteoarthritis (that’s like telling a painfully sun burned person they’re sun burned) and a heel bone spur.  A what?  Oh, an osteophyte!  Osteo comes from the Latin osseusos, ossis meaning bone and the Greek osteon, also meaning bone.   (Thank you for the memory, Hunter College of the City University of New York course in Greek and Latin roots taken a zillion years ago).

You know the name of my book about Chronic Kidney Disease is What Is It And How Did I Get It? Early Stage Chronic Kidney Disease.  That’s become my approach to any new ailment that shows up for me.  And there are lots of those lately.

We know from its name that a bone spur has to do with the bone.  We also know what a spur is.  Try to visualize a spur on the end of your heel.  Or, better yet, look at the diagram below. See it?

heel spur

According to MedicineNet.com at http://www.medterms.com/script/main/art.asp?articlekey=7094, this is the definition

Heel spur: A bony spur projecting from the back or underside of the heel that often makes walking painful. Spurs at the back of the heel are associated with inflammation of the Achilles tendon (Achilles tendinitis) and cause tenderness and pain at the back of the heel that is made worse by pushing off the ball of the foot. Spurs under the sole (plantar area) are associated with inflammation of the plantar fascia (the ‘bowstring-like’ tissue stretching from the heel underneath the sole) and cause localized tenderness and pain made worse by stepping down on the heel.”

The latter is my problem.  I’d actually thought that dancing was magic because when I did at Sustainable Blues (https://www.facebook.com/groups/SustainableBluesPhx/), I didn’t feel any pain at all.  Turns out that’s because I was dancing on my toes, not my heels.  I’ve still got bluesto thank daughter, Abby Wegerski, who started the dance as her Self Expression and Leadership Program project at Landmark Worldwide, and her co-instructor, Tyler Robbins, for those two pain free hours a week.

On to how I got it. Webmd.com (http://www.webmd.com/pain-management/heel-spurs-pain-causes-symptoms-treatments) tells us,

“Heel spurs occur when calcium deposits build up on the underside of the heel bone, a process that usually occurs over a period of many months. Heel spurs are often caused by strains on foot muscles and ligaments, stretching of the plantar fascia, and repeated tearing of the membrane that covers the heel bone. Heel spurs are especially common among athletes whose activities include large amounts of running and jumping.”

I don’t run and I don’t jump, but I do pop in a walking tape DVD every other day or so.  Could that be the cause?  I read on only to discover that age, weight, walking gait, worn out shoes (I wear the comfortable ones until they literally fall apart) and “frequent short bursts of physical activity” could be the culprits.  I am pretty sedentary except for those exercise periods each day.

Still not satisfied, I wanted to know what I could do about the heel spur I’d developed. Dr. Andrew Weil, my health hero before I developed Chronic Kidney Disease has quite a lot to say about that at: http://www.drweil.com/drw/u/ART03031/Heel-Spurs.html:

“….Symptomatic treatment involves rest, especially from the activity that is contributing to the condition and making symptoms worse …. Ice is recommended immediately following it…. Stretching exercises that gently lengthen the calm muscle will relax the tissue surrounding the heel and should be done several times a day, especially in the morning and after prolonged sitting. Over-the-counter or prescription-strength anti-inflammatory medications can help temporarily…. Deep tissue massage, taping and other physical therapy modalities can also be helpful. Arch support is highly recommended, either with shoe inserts or custom orthotics made by podiatrists. If pain continues, a steroid injection at the site of pain may be recommended….Sometimes bone spurs can be surgically removed or an operation to loosen the fascia – called a plantar fascia release – can be performed.”

I urge you to read his article for yourself since I omitted many of his warnings due to lack of space.  They are valid.  He also suggests natural remedies that you may find helpful, but be careful about the herbs.  As CKD patients, we need to rely on tested substances and, often, herbal supplements are not.  It was so much easier to deal with my health before CKD (or so I thought). As CKD patients, we cannot take Over The Counter (OTC) pain relievers.  Maybe taking a really close look at some of Dr. Weil’s natural treatments is worth a shot.  Just remember that you do have CKD.

Heel that Pain (love the name!) at http://www.heel-that-pain.com/heel_bone_spurs.php made a common sense point, although they sell the product to follow the common sense.  I am not endorsing their product because I haven’t tried it, but I do use orthotics from several different companies.orthotics

“The heel spur, because it is part of the bone, actually has no feeling in it. The pain that is generated from the heel spur is due to the soft tissue around the heel spur that gets irritated and inflamed and bruised. This is what creates the heel pain from the spur itself. If you can properly support the heel bone so that friction and motion are reduced, it will allow the soft tissue around the area of the heel spur to heal, and have a reduction in the inflammation and tenderness. The goal would be to support the heel bone enough so that the heel spur does not dig into the soft tissue.”

Wait a minute… I think I remember that I have spinal bone spurs too.  Well, there’s next week’s blog.

Kidney Book CoverI have a meeting with Annette, Folmer, the kidney education coordinator for SlowItDown (https://www.facebook.com/NativeAmericanCKDeducation and twitter.com) tomorrow to plan our presentation at the Men’s and Women’s Gathering at Talking Stick Resort on August 29.  I know how important CKD education is, but it hadn’t occurred to me that it would be exciting! By the way, this project emanated from my Landmark Worldwide Self Expression and Leadership Program.

Ah, the book.  I keep forgetting the original purpose of the blog was to publicize the book.  How life transforms! It does well and will continue to do so as long as you remember that every book you buy (Amazon.com and B&N.com) allows me to donate another one.

Until next week,

Keep living your life!