Any Veterans Here?

Veterans Day was Saturday, although many schools and businesses chose to celebrate it on Friday. That confused me since I mistakenly thought all national holidays falling on the weekend in the U.S. were celebrated on the following Monday. Once that was straightened out for me, I wondered if we were the only country to honor those who fought for us.

According to The United States Department of Veterans Affairs at https://www.va.gov/opa/vetsday/vetday_faq.asp, we’re not:

Q. Is Veterans Day celebrated in other countries?

A. Yes, a number of countries honor their veterans each year on November 11, although the name and types of commemorations differ somewhat from Veterans Day celebrations in the United States. For example, Canada and Australia observe “Remembrance Day” on November 11, and Great Britain observes “Remembrance Day” on the Sunday nearest to November 11. There are similarities and differences between these countries’ Remembrance Day and America’s Veterans Day. Canada’s observance is actually quite similar to the U.S. celebration, in that the day is intended to honor all who served in Canada’s Armed Forces. However, unlike in the U.S., many Canadians wear red poppy flowers on November 11 in honor of their war dead. In Australia, Remembrance Day is very much like America’s Memorial Day, a day to honor that nation’s war dead.

In Great Britain, the day is commemorated by church services and parades of ex-service members in Whitehall, a wide ceremonial avenue leading from London’s Parliament Square to Trafalgar Square. Wreaths of poppies are left at the Cenotaph, a war memorial in Whitehall, which was built after the First World War. At the Cenotaph and elsewhere in the country, a two-minute silence is observed at 11 a.m., to honor those who lost their lives in wars.

There are 600,000 veterans with kidney disease in the U.S. Considering that kidney disease is a medically dischargeable disease (Can you imagine soldiers in the field trying to stick to the renal diet?), I began to wonder just how our veterans were being treated once they were no longer active military.

I went to the National Institute of Diabetes and Digestive and Kidney Diseases at http://bit.ly/2ABGeli for the following information:

The prevalence of chronic kidney disease (CKD) in the Veteran population is estimated to be 34% higher than in the general population, due to demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension. VA currently cares for over 600,000 Veterans with kidney disease in their 153 medical treatment facilities or 800 community based outreach clinics (CBOC’s) across the United States. Those Veterans who progress to kidney failure are treated either at home or in one of the 70 VA dialysis units, or if dialysis services are not directly available, may be treated in the community under VA contracted care. Currently over 15,000 Veterans receive care directly by VA or through the community under VA contracted care. Eligible Veterans may also elect to receive dialysis care in the community using Medicare or other personal health benefits programs. Renal transplantation is also offered through the VA as a regionalized service at 5 centers.

Wait a minute. Why did “demographic differences and the existence of significant co-morbidities associated with CKD in the Veteran population—diabetes mellitus and hypertension” lead to a whopping 34% of veterans having kidney disease?

I know when Bear spoke with me about his 25 year military career, he talked of people with different ethnic backgrounds from different parts of the country… some from different parts of the world.

I remembered writing this in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease:

“…Native American, Alaskan Native, Hispanic, Pacific Islander or Afro-American ethnic groups…have a 15 to 17% higher occurrence of CKD.”

And I was off and running. Last Veterans Day’s Huffington Post was able to help out here.

“According to the U.S. Department of Defense, as of 2012 there were over 22,000 American Indians and Alaska Natives on active duty, and the 2010 Census identified over 150,000 American Indian and Alaska Native veterans.”

You can read the entire article at https://www.huffingtonpost.com/national-museum-of-the-american-indian/american-indians-serve-in-the-us-military_b_7417854.html.

And Hispanics? Journalist Erika L. Sanchez wrote in 2013 that over 157, 000 Hispanics served in the military then. By the way, her article at http://nbclatino.com/2013/01/01/u-s-military-a-growing-latino-army/ gives the rest of us a little insight into the Latino community’s military leanings.

I hesitate to come up with the number of Pacific Islanders serving in the military since the information is even older than that for Native Americans and Alaskan Natives (Did you notice they were grouped together?) or Hispanics. It’s also included with that of Asians, so the categories are Asian-Pacific Islanders rather than Pacific Islanders.

As for Afro-Americans or Blacks – readers, which name do you prefer? – the closest I can figure out is that 370,842 Blacks or 16% of the Blacks in the United States served in the U.S. military… in 2011.

None of these statistics is current. It takes time for the military to collect and compose their data, but I had been hoping for numbers that were a little more timely.

And now the biggie: just how much is The Veterans Administration spending on veterans with kidney disease?

Finally, a fairly current article. In April of this year, MedPage Today at https://www.medpagetoday.com/meetingcoverage/nkf/64668 offered this information from Kristen Monaco’s article:

Rajiv Saran, MD, of the University of Michigan, and colleagues found the total cost of CKD care in the Department of Veterans Affairs healthcare system increased from $12 billion in 2006 to $19 billion in 2014 in current dollars. Adjusted for inflation, the increase was 26%, the researchers reported as a late-breaking abstract at the National Kidney Foundation’s 2017 Spring Clinical Meeting.

More than three-fourths of the VA’s aggregate spending each year on CKD patients was dedicated to patients with either stage 3a or 3b disease. However, the average cost per patient to treat increased with each worsening stage of CKD, with non-dialysis stage 5 CKD being the most expensive.

To all those who served, whether or not you developed kidney disease, thank you from the bottom of my heart.

 

Until next week,
Keep living your life!

Advertisements

Not a Drug, a Medical Food

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

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

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

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

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

Purified, natural ingredients equal fewer side effects.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

Until next week,
Keep living your life!

Sex?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Communicate with your partner or others about how you feel.

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Book It!

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

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

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

This is what he wrote for us:

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Helping Where You Can

When my brothers made it public that they each had Parkinson’s’ Disease several years ago, I decided to see how I could help. They were being well taken care of by their wives and their medical teams, so they didn’t need my help. Maybe I could help others, I reasoned. So I began exploring ways I might be able to do that… and found one.

It was clear clinical trials with people of my heritage were being conducted and needed participants. It wasn’t clear what these studies entailed. They weren’t reader friendly enough for me to understand, but after multiple emails and phone calls asking for clarification, I finally understood. During the whole process, I kept thinking to myself that this was a wonderful way to help if only it were more accessible – meaning more easily understood.

A couple of weeks ago, Antidote Match approached me about carrying their widget on my blog roll. If you look at the bottom of the lists on the right side of the blog, you’ll see it in turquoise. Actually, I chose turquoise because you just can’t miss that color.

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

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

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

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

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

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

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

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

Important, right? But why Antidote Match, you ask? That’s easy: because it’s easy. The information offered is in lay language, the common language you and I understand, rather than in medicalese. Maybe I should just let them present their own case.

Antidote Match™

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

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

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

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

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

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

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

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

A bit about Antidote
Antidote is a digital health company on a mission to accelerate the breakthroughs of new treatments by bridging the gap between medical research and the people who need them. We have commercial agreements with the majority of the top 25 pharmaceutical companies and CROs, and a partner network that is growing every day.

Antidote was launched as TrialReach in 2010 and rebranded to Antidote in 2016. We’re based in New York, NY and London, U.K. For more information, visit www.antidote.me or contact us at hello@antidote.me.

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

On another note entirely: my local independently owned book store – Dog Eared Pages – in Phoenix has started carrying the SlowItDownCKD series. Currently, they have 2016 in stage. I had a wonderful time reading from my novel Portal in Time there last Thursday night and was more than pleasantly surprised at the number of CKD awareness contacts I made.
Until next week,
Keep living your life!

It’s the Heat AND the Humidity

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Long Term, Short, and your Heart

I received some comments about Acute Kidney Disease (AKI) in the midst of all the support after last week’s blog. It seems this is a new topic for so many of us. By us I mean Chronic Kidney Disease (CKD) patients. I know at stage 3, my nephrologist never brought this up to me.

Ah, but I remembered this from The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2:

On the very first page of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, I wrote “…chronic is not acute. It means long term, whereas acute usually means quick onset and short duration.”

All those years of teaching English in high school and college paid off for me right there in that sentence.

I’d always thought that AKI and CKD were separate issues and I’ll bet you did, too. But Dr. L.S. Chawla and his co-writers based the following conclusion on the labor of epidemiologists and others. (Note: Dr. Chawla et al wrote a review article in the New England Journal of Medicine in 2014.)

“Chronic Kidney Disease is a risk factor for acute kidney injury, acute kidney injury is a risk factor for the development of Chronic Kidney Disease, and both acute kidney injury and Chronic Kidney Disease are risk factors for cardiovascular disease.” …

Not surprisingly, the risk factors for AKI {Once again, that’s acute kidney injury.} are the same as those for CKD… except for one peculiar circumstance. Having CKD itself can raise the risk of AKI 10 times. Whoa! If you’re Black, of an advanced age {Hey!}, or have diabetes, you already know you’re at risk for CKD, or are the one out of nine in our country that has it. Once you’ve developed CKD, you’ve just raised the risk for AKI 10 times. I’m getting a little nervous here….

It makes sense, as researchers and doctors are beginning to see, that these are all connected. I’m not a doctor or a researcher, but I can understand that if you’ve had some kind of insult to your kidney, it would be more apt to develop CKD.

And the CVD risk? Let’s think of it this way. You’ve had AKI. That period of weakness in the kidneys opens them up to CKD. We already know there’s a connection between CKD and CVD. Throw that AKI into the mix, and you have more of a chance to develop CVD whether or not you’ve had a problem in this area before. Let’s not go off the deep end here. If you’ve had AKI, you just need to be monitored to see if CKD develops and avoid nephrotoxic {Kidney poisoning} medications such as NSAIDS… contrast dyes, and radioactive substances. This is just so circular!

As with CKD, your hypertension and diabetes {If you have them.} need to be monitored, too. Then there’s the renal diet, especially low sodium foods. The kicker here is that no one knows if this is helpful in avoiding CKD after an AKI… it’s a ‘just in case’ kind of thing to help ward off any CKD and possible CVD from the CKD.

Has your primary care doctor recommended a daily low dose aspirin with your nephrologist’s approval? This is to protect your heart against CVD since you already have CKD which raises the risk of CVD. Now here’s where it gets confusing, the FDA has recently revoked its endorsement of such a regiment.

Let’s see what more we can find out about this dastardly triumvirate.

The National Kidney Foundation at https://www.kidney.org/atoz/content/AcuteKidneyInjury offers this information about AKI.

Acute kidney injury (AKI) is a sudden episode of kidney failure or kidney damage that happens within a few hours or a few days. AKI causes a build-up of waste products in your blood and makes it hard for your kidneys to keep the right balance of fluid in your body. AKI can also affect other organs such as the brain, heart, and lungs. Acute kidney injury is common in patients who are in the hospital, in intensive care units, and especially in older adults.

You did catch that it can affect the heart, right?

Well, what about the heart and its diseases?

This is from the Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/heart-disease/basics/definition/con-20034056.

The term “heart disease” is often used interchangeably with the term “cardiovascular disease.”

Cardiovascular disease generally refers to conditions that involve narrowed or blocked blood vessels that can lead to a heart attack, chest pain (angina) or stroke. Other heart conditions, such as those that affect your heart’s muscle, valves or rhythm, also are considered forms of heart disease.

Many forms of heart disease can be prevented or treated with healthy lifestyle choices.

Maybe a reminder of what CKD is will help, too. WebMD at http://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-topic-overview#1 offers this simple, comprehensive explanation.

Having chronic kidney disease means that for some time your kidneys have not been working the way they should. Your kidneys have the important job of filtering your blood. They remove waste products and extra fluid and flush them from your body as urine. When your kidneys don’t work right, wastes build up in your blood and make you sick.

Chronic kidney disease may seem to have come on suddenly. But it has been happening bit by bit for many years as a result of damage to your kidneys.

Each of your kidneys has about a million tiny filters, called nephrons. If nephrons are damaged, they stop working. For a while, healthy nephrons can take on the extra work. But if the damage continues, more and more nephrons shut down. After a certain point, the nephrons that are left cannot filter your blood well enough to keep you healthy.

My head is spinning. One could – or could not – lead to another which, in turn, could – or could not – lead to the third. There’s no strict order and there’s no way of knowing until you actually have it. My layperson’s suggestion? Take good care of your kidneys.

Until next week,
Keep living your life!

Two Masters

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Here, There, and Everywhere

I was thinking about the AAKP Annual National Meeting coming up in September. You see, I’ve never been to one. Years ago, when I first started writing about Chronic Kidney Disease a reader asked if I’d be there. I was almost a decade younger then and had lots on my plate: teaching college classes, acting, writing, being an active mother, and getting used to my new diagnose. I had no time to run off to meet a bunch of people with the same disease. I didn’t even know anyone there!

Yep, things have changed for me. I’ve retired from both education and acting as of 2013, my children are out of the house although we still have almost daily contact, and I’m better at dealing with CKD. So I’m going. I thought you might like to know something about this group since it was started by patients for patients.

AAKP is the acronym for the American Association of Kidney Patients. I am flabbergasted that six patients in Brooklyn, New York, started this group in 1969 while they were undergoing dialysis and that today AAKP reaches one million people at all stages of kidney disease. I’m a member as of last week. Did I mention that membership is free? This year’s meeting will be in St. Petersburg, Florida from September 8th to the 10th.

I also shied away because I thought they’d have nothing to offer me since I’m stage 3 and the association was started by dialysis patients. I was wrong. Some of the General Sessions deal with national policy and kidney disease, innovations in kidney disease care, patient centered kidney disease care, and the kidney friendly diet. This is not all of them, just the ones I’m interested in.

The smaller Breakout Sessions that might interest others in the early or moderate stages of CKD are social media, dental health, clinical trials, staying active, veterans’ health, lab values, and vaccinations. But that’s not all: there’s even lunch with the experts on the first two days. The topics range from transplant, caregiver, advocacy, cooking, and support groups to acute kidney injury. I mentioned those areas that interest me, but there’s more, far more.

Before I start to sound like I’m selling you a product, here’s their web site so you can explore this association and national meeting for yourself: https://aakp.org.

Let’s say you don’t want to travel. How else can you partake of the kidney patient world, the part of it that doesn’t deal with going to the nephrologist or renal dietician? Well, have you heard of Renal Support Network at http://www.rsnhope.org/? Lori Hartwell has had kidney disease since she was two years old and wanted to instill hope in those with the disease. Now you understand the URL. There are also podcasts about kidney disease at http://www.rsnhope.org/kidneytalk-podcast/ or you can go through the menu on their home page.

Here’s something you can do to help other kidney patients and maybe, just maybe, see your work in print.

Calling all Storytellers who have kidney disease, Share your Experience!

Enter RSN’s 15th Annual Essay Contest.
This year’s theme is “Describe a positive decision that you have made about your healthcare.”
First Prize: $500, Second Prize: $300, Third Prize: $100
Winning essays will be published on RSNhope.org and in Live&Give newsletter

Lori was especially helpful to me when I was first starting out in CKD awareness advocacy. I think you’ll find something of interest to you on her website, although I’ll bet it won’t be the same something for any two people. What I especially like is the Health Library with articles on varied subjects.

Further afield, The Bhutan Kidney Foundation is doing an Amazonian job of spreading kidney disease awareness. I am constantly reading about their walks and educational meetings, as well as governmental initiatives. I think they may even have a Facebook page. Let me go check. Hi again. I’m back and they do.

Have you heard of Mani Trust? This is an India based group that strives to provide humanitarian help to individuals and their country, including those suffering from kidney disease. We know this is not a Western-part-of-the-world-only problem, but I wonder if we realize just how widespread it is.

Remember I told you about the CKD awareness presentation I offered at a global conference several weeks ago? I found astounding facts from World Life Expectancy at http://www.worldlifeexpectancy.com. One of the most striking facts I included in that presentation is that globally 864,226 people  died of kidney disease last year. That makes kidney disease number 15 in the cause of death hit parade.

In Malaysia, there were 2,768 deaths due to kidney disease, over 2% of the country’s total population. In Albania, there were 443, that’s also close to 2% of the country’s total population. Ghana had 2,469 deaths, which is 1.3%.  Egypt? 15,820, which is almost 3½ %. Here in the United States, there were 59,186 deaths, which is almost 3% of our population. What’s my point?

Kidney disease is a global problem. I don’t know what I can do to help in other countries in other parts of the world, but I do know what I can do to help here… and what you can do to help here. If you’re able to, attend the national meetings and local conferences about kidney disease and spread whatever new information you’ve learned. If you are unable to travel, keep your eye on the Facebook kidney disease pages which often have files and delve into them. Share this information, too. If you don’t travel and you’re not on a computer, register for mailing lists and share information from them, too. Of course, check everything you read with your nephrologist before you share and use the advice yourself.

 

You’ll find a blog roll – a list of kidney care and awareness organizations – on the right side of my blog. Why not explore some of these and see which ones appeal to you? If you like them, you’ll read them. And, hopefully, if you read them, you’ll share the information. According to the latest CDC findings, more than one out of every seven people in the United States has CKD. Let’s try to change those figures. By the way, you can read more about this at https://www.cdc.gov/diabetes/pubs/pdf/kidney_factsheet.pdf.

Until next week,
Keep living your life!

How Did It Get Political?

A couple of weeks ago, I wrote about Dr. Amy D. Waterman at UCLA’s Division of Nephrology’s Transplant Research and Education Center. We’d met at Landmark’s 2017 Conference for Global Transformation. She has brought to the world of dialysis and transplant the kind of education I want to see offered for Chronic Kidney Disease. I also asked for ideas as to how I could help in developing this kind of contribution to CKD awareness… and the universe answered.

First the bad news, so you can tell when the good news come in. Here in the U.S., The National Kidney Foundation at https://www.kidney.org/news/national-kidney-foundation-statement-macarthur-amendment-to-american-health-care-act issued the following statement on May 3 of this year:
“The National Kidney Foundation opposes the American Health Care Act (AHCA) as amended. The amendment to AHCA, offered by Representative Tom MacArthur (R-NJ), raises significant concerns for millions of Americans affected by chronic diseases. If this bill passes, National Kidney Foundation is highly concerned that insurers in some states will be granted additional flexibility to charge higher premiums, and apply annual and lifetime limits on benefits without a limit on out-of-pocket costs for those with pre-existing conditions, including chronic kidney disease. The bill also permits waivers on Federal protections regarding essential health benefits which could limit patient access to the medications and care they need to manage their conditions. These limits could also include access to dialysis and transplantation. For these reasons, we must oppose the legislation as amended.


In addition, National Kidney Foundation is concerned that the elimination of income based tax credits and cost sharing subsidies, combined with the reduction in funds to Medicaid, will reduce the number of people who will obtain coverage; many of whom have, or are at risk for, chronic kidney disease (CKD).”

The world sees what stress Trump is causing our country (as well as our planet.) Yet, there is hope in the form of a new bill.

“… the bill — introduced in the House by Reps. Tom Marino (R-Pennsylvania), John Lewis (D-Georgia) and Peter Roskam (R-Illinois) — aims to:
• Have the Department of Health and Human Services (HHS) and U.S. Government Accountability Office (GAO) issue a series of recommendations to Congress on “how to increase kidney transplantation rates; how palliative care can be used to improve the quality of life for those living with kidney disease; and how to better understand kidney disease in minority populations” – to back federal research efforts;
• Create an economically sustainable dialysis infrastructure and modernized quality programs to improve patient care and quality outcomes — for instance, by creating incentives to work in poorer communities and rural areas;
• Increase access to treatment and managed care for patients with a confirmed diagnosis of kidney disease by ensuring Medigap coverage for people living with ESRD, promoting access to home dialysis and allow patients with ESRD to keep their private insurance coverage.
According to the National Kidney Foundation, more than 660,000 Americans are receiving treatment for ESRD. Of these, 468,000 are undergoing dialysis and more than 193,000 have a functioning kidney transplant.”

Thank you to the CDC at bit.ly/2rX8EG5 for this encouraging news. Although it’s just a newly introduced bill at this time, notice the educational aspects of the first point.
For those outside the U.S, who may not know what it is, this is how Medicare was defined in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease “U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.”

An interview with Trump while he was campaigning last year was included in SlowItDownCKD 2016, (11/14/16) This is what he had to say about medical coverage for those of us with pre-existing conditions like CKD. (Lesley Stahl is the well-respected interviewer.)
“Lesley Stahl: Let me ask you about Obamacare (Me here: that’s our existing health care coverage.), which you say you’re going to repeal and replace. When you replace it, are you going to make sure that people with pre-conditions are still covered?
Donald Trump: Yes. Because it happens to be one of the strongest assets.’ ….
What does the president elect say about Medicare? Those of us over 65 (That’s me.) have Medicare as our primary insurance. I am lucky enough to have a secondary insurance through my union. How many of the rest of us are? By the way, if Medicare doesn’t’ pay, neither does my secondary.”

This is from the same book:
“Here’s what Trump had to say in a rally in Iowa on December 11th of last year (e.g. meaning 2015).
‘So, you’ve been paying into Social Security and Medicare…but we are not going to cut your Social Security and we’re not cutting your Medicare….'”

We do not have the most truthful president here in the U.S., so you can see how even the introduction of the Marino, Lewis, Roskam bill is good news for us. While this is not meant to be a political blog, our pre-existing illness – our CKD – has caused many of us to unwittingly become political.


I see myself as one such person and so will be attending the AAKP Conference in St. Petersburg, Florida, in September. What’s the AAKP you ask? Their Mission Statement at https://aakp.org/mission/ tells us:

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

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

Advocacy
For more than 40 years, AAKP has been the patient voice – advocating for improved access to high-quality health care through regulatory and legislative reform at the federal level. The Association’s work has improved long term outcomes in both quality of health and the ability for patients and family members affected by kidney disease to lead a more productive and meaningful life.

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

For those of you of can’t get to the Conference, they do offer telephone seminars. The next one is June 20th. Go to https://aakp.org/aakp-healthline/ for more information.

Talking about more information, there will be more about AAKP in next week’s blog.
Until next week,
Keep living your life!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“VA eKidney Clinic

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

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

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

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

 

 

 

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

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

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

Until next week,

Keep living your life!

So That’s How It’s Decided

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

Women Marching to the Kidney’s Beat

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

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

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

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

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

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

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

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

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

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

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

 

Until next week,

Keep living your life!

Women and Water (Men, too)

Welcome to March: National Kidney Month and Women’s History Month. I’m going to fudge a bit on the ‘History’ part of that as I did last month with Black History Month. I don’t often have guest bloggers, but this month will feature two women as guest bloggers in honor of Women’s History Month. The first is Jessica Walter, who sent me the following email last month:

Hi There,

I am a freelance health and food writer, I have teamed up with a small senior lifestyle advice site, I worked with them to develop a complete guide on how to eat better and be healthier from a dietary point of view. This includes detailed information on why being hydrated is so important. … you can check out the article here:

https://www.senioradvisor.com/ blog/2017/02/7-tips-on- developing-better-eating- habits-in-your-senior-years/.

I liked what Jessica had to say and how easily it could be adapted not only for senior Chronic Kidney Disease patients, but all Chronic Kidney Disease patients.

In addition, she sent me this short article about hydration and CKD. It’s easy to read and has some information we constantly need to be reminded of.

Staying Hydrated When You Have Chronic Kidney Disease

We all know that drinking water is important for our health, and monitoring fluid intake is critical for those with chronic kidney disease. Too much water can be problematic, but so can too little. Dehydration can be serious for those with chronic kidney disease. If you are suffering from vomiting, diarrhea, fever, or diabetes, or if you urinate frequently, you may become dehydrated because you are losing more fluid than you are taking in. For those without chronic kidney disease, the solution is to increase the intake of water until the body is sufficiently hydrated.

Since dehydration can decrease blood flow to the kidneys, and as fluid intake must be controlled in patients with chronic kidney disease, it’s important to closely monitor their fluid intake and loss in these circumstances.

Recognizing The Signs

The first step is to recognize the physical signs of dehydration. You may have a dry mouth or dry eyes, heart palpitations, muscle cramps, lightheadedness or fainting, nausea, or vomiting. You may notice a decrease in your urine output. Weight loss of more than a  pound or two over a few days can also be an indicator of dehydration. If you are taking ACE inhibitors and ARBs, such as lisinopril, enalapril, valsartan, or losartan, or water pills or diuretics, these medications can harm your kidneys if you become dehydrated. It is doubly important to be aware of signs of dehydration if you are on any of these medications.

Steps to Take

To rehydrate your body, start by increasing your intake of water and ensure that you are eating plenty of fruits and vegetables. (Me here: remember to stay within your renal diet guidelines for fruits, vegetables, and fluids.)If you cannot keep water down, or if increased consumption doesn’t alleviate the signs of dehydration, contact your health care provider  immediately.

They may also recommend a different fluid than plain water since electrolytes and minerals can also be reduced if you are dehydrated, but you may still need to watch your intake of potassium, phosphorus, protein, and sodium. Your doctor may recommend an oral rehydration solution that will restore your body to a proper level of hydration. If you have a fluid restriction because you are on dialysis, you should consult your healthcare provider if you have issues with or questions about hydration. Taking in or retaining too much fluid when you have these restrictions can lead to serious complications, including headaches, swelling, high blood pressure and even stroke. Carefully monitoring your fluid intake and watching for signs of dehydration will help you to avoid the consequences of dehydration.

I’ve blogged many times over the last six years about hydration. I’m enjoying reading this important material from another’s point of view. I’m sorry Jessica’s grandmother had to suffer this, but I’m also glad Jessica chose to share her writing about it with us.

 

This June, 2010, article included in The Book of Blogs: Moderate Chronic Kidney Disease, Part 1 furthers explains:

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

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

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

The CDC also offers advice to avoid heat illness:

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

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

It’s clear we need to keep an eye on our hydration. While we’re doing that, keep the other eye out for SlowItDownCKD 2016 purposely available on World Kidney Day on Amazon.

Until next week,

Keep living your life!

February is Black History Month

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

At Last: Cuba

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

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

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

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

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

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

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

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

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

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

As for the quality of the medical schools,

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!IMG_2979

It’s Unfolding Now

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

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!

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!

 

 

We, the People Who Have CKD…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

* IC means interstitial cystitis; PBS is painful bladder syndrome

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

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

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

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

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

What is itUntil next week,

Keep living your life!

Bridging the Gap…

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

According to Heathline.com,

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

I’m definitely barking up the wrong tree here.

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

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

Until next week,

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

Two Levels?

I am now the very satisfied user of a Bilevel Positive Airway Pressure Machine (BiPAP). I fought against this for years, preferring to use a Mandibular Advancement Device (MAD) instead so I wouldn’t be ‘tethered’ to a machine. After only two nights of sleeping with the BiPAP, I have more energy and less brain fog. Heck, that happened after only one night. I wonder just how much of the low energy and high brain fog that I was attributing to Chronic Kidney Disease was really from not enough oxygen and too much CO2 in my lungs.

Whoops, here I am jumping in at the end again. Maybe a reminder of what a MAD is would be the logical place to start. This is what I wrote in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2,Digital Cover Part 2 redone - Copy

“…the MAD forces your airway open by advancing your lower jaw or mandibular.”

If your air passages are restricted, you’re simply not getting enough air into the lungs.

After well over two years, my sleep apnea started becoming worse instead of better, even when the MAD had been extended as far as it could go to keep that airway open. (Laughing over here; it sounds like an instrument of torture. It isn’t.)

You’re probably wondering what this has to do with CKD. I used my baby, What Is It and How Did I Get it? Early Stage Chronic Kidney Disease to find out.

What is it“The first mention of the lungs was in an explanation of your nephrologist’s ROS. ‘Then came the Review of Systems [ROS]. …, the lungs were referred to with questions about coughs, shortness of breath and dyspnea.’”

That does still leave us with the question of why the lungs were covered at all in this examination for CKD. According to http://www.ncbi.nlm.nih.gov/pubmed/20676805, one of the National Institutes of Health’s sites, sleep apnea can raise blood pressure, which in itself is one of the problems of CKD.  It can also result in glomerular hyperfiltration.  The chart below is from their site.  Notice ‘eGFR declines’ is one of the results. These three areas are the most important to us as CKD patients, which doesn’t mean the other effects should be ignored.

 

NIHMS233212.html

What was missing for me was why it was so important to get as much air into the lungs as possible. Livescience at http://www.livescience.com/37009-human-body.html was able to help me out here.

“….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.”

Why not a Continuous Positive Airway Pressure (CPAP) machine then, you ask? WebMD at http://www.webmd.com/sleep-disorders/sleep-apnea/continuous-positive-airway-pressure-cpap-for-obstructive-sleep-apnea explains:

“A CPAP machine increases air pressure in your throat so that your airway doesn’t collapse when you breathe in.” CPAP

Got it… and necessary when you have sleep apnea. So the next logical question is why was I prescribed a BiPAP instead. Notice in the explanation from Livescience above that the lungs also remove carbon dioxide. Yep, not enough was being removed as I slept.

I liked this explanation of the difference between the CPAP and the BiPAP from verywell at https://www.verywell.com/what-is-bipap-3015273 :

“The key distinguishing feature of BiPAP is that the pressurized air is delivered at two alternating levels. The inspiratory positive airway pressure (IPAP) is higher and supports a breath as it is taken in. Conversely, the expiratory positive airway pressure (EPAP) is a lower pressure that allows you to breathe out. These pressures are preset based on a prescription provided by your sleep doctor and alternate just like your breathing pattern.”

It’s when you breathe out that you rid yourself of carbon dioxide. But I wanted to know why too much of that in your system is not a good thing. I was delighted to find this scientific, yet understandable, (albeit older) posting by then Ph.D. candidate Shannon DeVaney at http://www.madsci.org/posts/archives/2005-06/1118758011.Gb.r.html. MadSci is a service provided by Washington University in St. Louis.

“…much of the body’s excess carbon dioxide ends up in the blood…. The net effect of increased carbon dioxide in the blood is lowered blood pH (that is, the blood becomes more acidic). The ability of hemoglobin to bind with oxygen decreases with decreasing pH in a phenomenon called the Bohr effect (sic). Because of the Bohr effect, increasing CO2 concentrations indirectly reduce the oxygen carrying capacity of the blood.

BiPAPCarbon dioxide can also react with parts of the hemoglobin molecule to form carbamino compounds. The formation of these compounds directly reduces the ability of hemoglobin to bind with oxygen and therefore also reduces the oxygen carrying capacity of the blood.

So, in these two ways (indirectly by reducing blood pH and directly by reacting with hemoglobin) carbon dioxide can reduce the ability of our blood to carry oxygen to tissues throughout the body where it is needed. It’s a good thing, then, that the excess carbon dioxide in our blood diffuses into our lungs, where it leaves the body when we exhale.”

Except in my case, it wasn’t. Hence the BiPAP to help me out.  If the results of the last two nights continue, it seems I needed an awful lot of helping out… and I didn’t know it. So far today, I have booked a combined 70th birthday cruise to Cuba for Bear and me, conferred many times by phone SlowItDownCKD 2015 Book Cover (76x113)and text with my wonderful sister-in-law – Judy Peck (mentioned several times in SlowItDownCKD 2015) – about cabins, insurance, land excursions, packages, etc., then gotten back to our travel agent with our decisions, spoken with three different doctors and two labs, communicated with three of my daughters, contacted our donation center for pick up, and scheduled several maintenance jobs for my house – and I’m not tired. I haven’t yawned once. I could learn to like living like this.

By the way, between Medicare and my secondary insurance, this is not costing me a thing. Oh goody, more money for our birthday present to ourselves.

Until next week,DIGITAL_BOOK_THUMBNAIL

Keep living your life!

Deep in the Heart of Texas

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

Keep living your life!

The Less Than Sexy Sinuses

photoHappy birthday TODAY to my first born, Ms. Nima Beckie, whose name means (in Tibetan)  the sun up in the sky.  You were, and always will be, my miracle. I was never quite sure I would be pregnant and give birth in this life until there was you.  Thank you, my love.QPJ8IQXD2omxIGstmJVegwlJJ4zLcZLsR0skZQQxogg

This weekend was also the celebration of our first month of married life and I spent it in bed, but not the way you might think.  I have a whopping sinus infection: bacterial, non-contagious infection.  First of all, no one (and I mean no one) will believe me that it is non-contagious.

I wasn’t even sure that I believed it, so I researched it – of course. Viral commonly means an airborne virus which doesn’t respond to drugs since it needs a host to live in , and so, is already  inside our cells by the time we become ill. One way we spread this type of infection is by sneezing and coughing in public.

Bacteria, on the other hand, do respond to drugs like the 500 mg. of ciprofloxacin I’m taking twice a day for ten days. (I ran this prescription from my primary care doctor by both the pharmacist and the nephrologist to make certain the drug wouldn’t harm my kidneys… and I trust my primary care doctor!)  Bacteria need no host and are cells in their own right.

Now, can I please leave the house?  Or will you at least visit me?  Actually, once I could crawl out of bed, I found myself busily updating and vetting another book I’m working on with pretty good results.  I also found things in the house I didn’t even know were missing.  Not bad for someone who hates to be down and out for the count. I’m not so good at being a patient.

Sinuses are the area of the body that give Bear and his family trouble, not me or mine.  I like trying new things, but this is not exactly what I had in mind.  The obvious question is, “How did I suddenly develop an infection in this part of the body of all places?”.

According to MedlinePlus at http://www.nlm.nih.gov/medlineplus/sinusitis.html,

“Sinusitis can be acute, lasting for less than four weeks, or chronic, lasting much longer. Acute sinusitis often starts as a cold, which then turns into a bacterial infection. Allergies, pollutants, nasal problems and certain diseases can also cause sinusitis.”

Well, I have allergies.  And sinusitis just means an inflammation of the sinuses – which is what an infection is.

But what, if anything, does this have to do with Chronic Kidney Disease?  You’ve got to remember that your immune system is already compromised.  Your kidneys aren’t working at 100% (see your GFR).  Your medications have to be monitored and sometimes modified.  If your body is not releasing the meds at full capacity via the kidneys that aren’t working at full capacity, you may need to take less of them, lower the strength, or lengthen the time between doses.

sinusesBack to the sinuses.  I knew where they were because I could feel them when I first realized I was ill.  I’m still not that quick to realize when I’m ill and was at my primary care doctor’s office for the required annual Medicare Wellness visit (How’s that for irony?) when she quickly changed it to a non-Wellness visit and asked me to schedule another Wellness visit.

The Mayo Clinic has this to say about acute sinusitis:

“Acute sinusitis (acute rhinosinusitis) causes the cavities around your nasal passages (sinuses) to become inflamed and swollen. This interferes with drainage and causes mucus to build up.

With acute sinusitis, it may be difficult to breathe through your nose. The area around your eyes and face may feel swollen, and you may have throbbing facial pain or a headache.”

You can read more at: http://www.mayoclinic.com/health/acute-sinusitis/DS00170.

Before we get any more detailed here, a few reminders (taken from What Is It And How Did I Get It? Early Stage Chronic Kidney Disease’s Glossary):

Acute  – extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic.

Antibiotic  – medication used to treat infection.

Chronic  –  Long term, the opposite of acute.

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

GFR – Glomerular filtration rate which determines both the stage of kidney disease and how well the kidneys are functioning.

Medicare – U.S. government health insurance for those over 65, those having certain special needs, or those who have end stage renal disease.

Nephrologist – renal or kidney and hypertension specialist.

Hmmm, I hadn’t realized how often I use technical terms which have become part of my personal vocabulary.  I’ll make a determined effort to be aware of that in the future.

I intend to have the acute kind of sinus infection.  I can’t see making this a lifelong practice, so I’ll try to avoid it.  I’m not quite sure how just yet.  Here are some suggestions I found at: http://www.essortment.com/prevent-sinus-infection-62926.html, which calls itself “your source for knowledge.”  I am not familiar with the site, although I did like that they differentiate between viral and bacterial sinusitis.

“Be sure to blow your nose frequently to prevent a mucous buildup. Apply a warm, but not hot, washcloth or compress to your face for five or ten minutes at a time, perhaps twice a day, to help loosen stuffy passages. Very warm showers or baths likewise can help to release tight muscles and open the sinuses to let them flow. Enjoy hot tea on a regular basis. Filled with flavenoids and antioxidants that can track down and kill bacteria, tea’s steam can open up and loosen your sinus passages to prevent problems from developing.”

sinus infectionThis is the simplest and most direct picture of infected sinuses I could find.  I felt as if I had swollen glands, could barely talk, could not stop blowing my nose, and (the worst part for a CKD patient who avoids NSAIDS) had a headache that stopped me cold.

Not quite half way into the antibiotic regime, I’m ready to go conquer the world again… or at least work on getting CKD information on the reservations, but something tells me to hold off another day or so.  Oh, right, it’s Bear.  He keeps saying it’s a better idea to deal with this now than keep having to deal with it in the future.  I married such a smartie!

Until next week,

Keep living your life.

Read, Read, Read

I’m a voracious reader.  I read everything: instructions, food labels, medicine bottles, research, fiction, non-fiction and my doctors’ notes.  In What Is It And How Did I Get It? Early Stage Chronic Kidney Disease, I wrote about keeping a file for yourself for each doctor you see. 

                                    

                                     I began requesting copies of my doctor visit reports as well as my blood and urine tests so I could have my own file

                                     at home and stay on top of whatever I needed to. With these copies, my home files would be much more thorough.

                                     I was feeling burned by my previous P.A.’s failure to pick up on the low readings for the estimated GFR and felt I

 

                                     had to be my own case manager. I still do and find both the nephrologist and my primary  care

                                     physician  agree with me.

                                  

                                   Not a single doctor that I’ve seen for a test or a consultation has ever refused or been difficult about

                                   making certain I receive these copies. Most  (The one exception was a rheumotogist I encountered after

                                  the book was published who not only charged for these copies, but had me doing the telephone run

                                  around just to request them.) have encouraged me to keep my own, thorough medical files at home.  I

                                  suspect it may have made life easier for these doctors, too, since there was no calling other doctors to fax

                                  reports or requesting them from labs.  I had them and could fax them over to whichever doctor needed to

                                 see them immediately.

 

 I have been adding quite a bit to these files recently due to the cataract surgery, sleep apnea apparatus, allergies, biopsies, cryosurgery, and an asthma scare.  I have been a bit of a medical mess lately.  

Ever notice that things happen in threes? I’m beginning to think they may happen in sixes. At any rate, I began to doubt my own advice until I read the following articles. 

Opening MDs’ Notes to Patients Wins Support

By David Pittman, Washington Correspondent

Published: October 13, 2012

WASHINGTON — Patients who viewed their doctors’ notes reported feeling more in control of their care and practiced better medication adherence, a study showed.

You can read the rest of this one at:

http://www.medpagetoday.com/PracticeManagement/PracticeManagement/35298?utm_content=&utm_medium=email&utm_campaign=DailyHeadlines&utm_source=WC&xid=NL_DHE_2012-10-15&eun=g596983d0r&userid=596983

I have to agree that I do feel more in control when I read the doctors’ notes. I’m also something of an overachiever, so I want to see my success at whatever was instructed – provided I understand it and agree with it – reflected in my doctors’ notes.

As for my doctors writing more clear and easily understood notes once they realized I would be reading them, well…. maybe it’s because they know I’m going to research that mine don’t do this.

Wait a minute; I used to spend quite a bit of time researching. It seems to me that I spend less and less time researching these days, but am not certain if that’s due to the growth of my knowledge base (Oh no!  I’m using my college instructor vocabulary in a CKD blog.  Talk about needing to write more plainly!) or if doctors really are writing in a way their patients can understand.

The other article that caught my eye was this one:

Medication beliefs strongly affect individuals’ management of chronic diseases, MU expert says

Health practitioners should use behavior-change tactics so patients take medications as prescribed

COLUMBIA, Mo. – Nearly half of patients taking medications for chronic conditions do not strictly follow their prescribed medication regimens. Failure to use medications as directed increases patients’ risk for side effects, hospitalizations, reduced quality of life and shortened lifespans. Now, a University of Missouri gerontological nursing expert says patients’ poor adherence to prescribed medication regimens is connected to their beliefs about the necessity of prescriptions and concerns about long-term effects and dependency.

The entire article is at: http://www.eurekalert.org/pub_releases/2012-10/uom-mbs101512.php

I readily accept that your beliefs dictate your behavior.  For example, my PCP was worried that I might be developing asthma and prescribed a steroid inhaler plus a daily allergy pill until I could see my immunologist.

She was being cautious, but the QVAR could cause oral thrush – a fungal condition – if I didn’t rinse my mouth and teeth carefully enough.  That was scary.  A medication that could cause another condition?

Hmmmm, it did allow me to breathe freely, though.  After a couple of weeks, I became even more uncomfortable since I believed I was developing a dependence on the QVAR. For once in my life, I didn’t research that.  I just stopped taking it.

When I did get to see my immunologist, I suggested stress might be causing the ferocious cough and the difficulty catching my breath afterward.  Not only did I have all these annoying medical problems I mentioned above, but my good buddy and my cousin died in the same week.  It was a rough patch in my life unlike any I’d experienced in the last twenty years.

My immunologist listened to me and suggested breathing exercises that might help since I wasn’t interested in any more pills or other medication.  At my request, she wrote the instructions for yoga breathing in her notes. And, of course, gave me a copy.

As for the article’s mention of mechanical reminders to take your medication, I still wouldn’t take medication if I didn’t agree with the purpose for taking it.  I do think I should have been more responsible and spoken to Dr. Zhao before I just stopped, but who says I was thinking clearly.

Bear uses the reminder on his phone whenever he needs to take a new medication (or cooks or times finish on his woodwork. He’s very clever that way.)  It works for him and he’s found some pretty interesting ring tones. If that method of reminder works for you, use it.  My meds are always meal based, so that triggers me to take the meds.

Here’s a laugh, sometimes I’m just not hungry but I know I have to have something in my stomach before I take my meds so I eat.  Can I blame all this excess weight on that?  Please?????

Until next week,

Keep living your life!

It’s All Connected

Bunches of people and groups have been sending me notification of how much they like the blog.  Rather than waiting for the following Monday to acknowledge their likes, I’ve been thanking them on the Facebook page (https://www.facebook.com/WhatHowearlyCKD) which also automatically posts it on Twitter (WhatHowEarlyCKD). So, if you’ve sent me a message saying you like the blog, see your name in print there.

I’ve been unhappy about the misspelling of names in the blogs.  What I missed is that while I was obsessing about that, I haven’t been catching editing errors.  Not good for an editor. Last week, I wrote “Mother’s Day and Mother’s Day,” instead of “Mother’s Day and Father’s Day.”  Errors happen, but I proofed the blog the usual three times!  Thanks for reader and friend, Amy Vlasity, for catching that.  As for me, I think I’ll start drinking one of my two cups of coffee a day before I start writing the blog.

A friend suffered a really bad bout of gout recently: fever, extreme pain in his knees, loss of appetite, the whole gamut.  That got me to thinking  about what it would have meant to him if he had Chronic Kidney Disease.  Researching that brought me to an English article which sited an American study: http://www.arthritisresearchuk.org/news/general-news/2011/november/gout-more-common-among-people-with-chronic-kidney-disease.aspx.  I’m going to reproduce only one paragraph of the article here because it brought home exactly what gout with  chronic kidney disease can do to your body:

The findings were presented at Kidney Week 2011 by researcher Dr Erdal Sarac. He concluded: “This study reveals a high prevalence of gout in patients with CKD. Male sex, advanced age, CAD, hypertension, and hyperlipidemia  were significantly associated with gout among CKD patients.”

In case you haven’t got a copy of my book handy, I’ve included a small glossary defining the terms in that last, information packed sentence –

CAD: coronary artery disease

gout: particularly painful form of inflammatory arthritis characterized by a build-up of urate crystals in the joints, causing pain and inflammation

hyperlipidemia: high cholesterol

hypertension: high blood pressure

urate: A salt of uric acid

One disease, CKD, can be implicated for three others if you also have gout.  When I wrote about being careful what drugs your dentist gives you because you are already medically compromised by simply having CKD, I didn’t know that gout is also somehow in the mix of being medically compromised.  I have hyperlipidemia and hypertension and CKD.  True, I’m not an older male but should I become more viligant about any hints of gout?  I saw the pain my friend endured and don’t want that for myself.

I would have to be careful about my food and beverage intake. Oh, wait, I’m already doing that by following the renal diet. In both, you are urged to cut back on alcohol and drink more water instead. Purines are a problem, too, but then again I am limited to five ounces of protein (a purine food source) per day. Hmmm, avoiding sugar-sweetened drinks  may help. Say, with CKD, I have to watch my A1C (how the body handles glucose or sugar in a three month period) so that I don’t end up with diabetes.  That means I’m watching all my sugar intake already. I see fructose rich fruits can be a problem.  But I’m already restricted to only three servings of fruit a day!  Oh, here’s the biggie: lose weight.  Yep, been hearing that from my nephrologist for four years.  To sum up, by attending to my CKD on a daily basis, I’m also attempting to avoid or lessen the effects of gout.

This is getting very interesting.  I also take medication for both hypertension and hyperlipidemia.  Are they also helping me to avoid gout?  It seems to me that by treating one conditiion (or two in my case), I’m also treating my CKD and possibly preventing another.  It is all inter-related.

This is part of an article from one of DaVita’s sites.  You can read the entire article at: http://www.yourkidneys.com/kidney-education/Treatments/Living-a-full-life-after-a-chronic-kidney-disease-diagnosis/3189. Notice how much of this advice overlaps that given to a gout patient.

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 CKD 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.

Studies confirm that keeping your blood pressure in check can help slow the progression of kidney disease, especially if you have diabetes and/or proteinuria (protein in the urine). According to the National Kidney Foundation (NKF) guidelines, you should keep your blood pressure at or below 130/85 if you have kidney disease, and at or below 125/75 if you also have diabetes and/or proteinuria.

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

If you have diabetes, tighter management of your blood glucose level can help slow the progression of kidney disease. It is important to keep your hemoglobin A1c at less than 6.5% or at the level established with your doctor, and closely monitor your blood glucose to avoid hypoglycemia. Ask your doctor or diabetes educator about your diabetes treatment goals and options.

  Both my daughters and Bear are ill right now, thankfully none of their illnesses CKD related.  That doorway in the picture?  I like to think of it as the doorway to health.  It’s my way of reminding myself that you (and I) can help ourselves when we’re ill.

Until next week,

Keep living your life!

You ARE Part Of The Process

Readers of the blog have repeatedly asked me to include reviews of the book and I have repeatedly forgotten.  Ignoring what that might say about me as a person, I’ve included the Amazon reviews today.  We’ll have to wait for another blog to include the B & N reviews or the blog would be more than double the length of the longest one so far. You can order the book on Amazon or B & N in both print and Kindle, but only print at myckdexperience.com. If you’d like a print book, I can mail you one at the discounted price of $10.00 and you can have me personalize it, too.  Enough selling!
Now, about being involved.  The article I’ve included today has to do with  the idea that the patient must have a say in determining which tests (s)he takes and is written from a physician’s point of view.  I discuss this in What Is It And How Did I Get It? Early Stage Chronic Kidney Disease and you’ll notice that some of the reviews mention it, too.  This is your body, your life. Certainly you should seek the advice of medical experts, but the decision whether or not to take (insert name of medical test) is ultimately yours. This post is from KevinMD.com.  The URL is:  http://www.kevinmd.com/blog/2012/05/test-test-include-patient.html. As usual, the comments in brackets are my own and not part of that post.
 Shannon Brownlee’s recent post, “Don’t discard shared decision making on the basis of PSA testing,” [that was a previous post on the same blog] couldn’t ring more true. The crux of shared decision making is that the patient must decide, with his or her physician, which tests or procedures make sense, given the various risks, tradeoffs and outcomes. Discarding the construct on the basis of one test (PSA testing) [in that previous posting] is not only poor form in that it is a sample of one, but also what might not seem like much of a choice to some may be the biggest choice of all to someone else.Choice is the operative word in this debate. Patients need to know their options, regardless of physician opinion or what research says would probably happen (i.e. a false positive). It is up to the patient to choose whether the odds are worth it to them. And while PSA testing [again, this post refers to all medical testing, not just PSA]  may not be strong in validity (though the research does conflict), causing some doctors to (erroneously, in my opinion) consider it non-elective, there are certainly other common medical tests that warrant shared decision making, such as colon cancer screening, for example. In addition to the decision of whether or not to be tested there are several choices about how to get tested and then after that several choices about what to do in the event that a polyp is found. When medical evidence supports more than one approach to testing, patients should be informed about their choices and providers should respect their preferences.Shared decision making is not just the right thing to do, it is one of the most effective ways to combat the myriad health issues affecting us today – quality, cost, satisfaction. Shared decision making is not meant to encourage or discourage certain tests or procedures – it is meant to involve and educate each patient so that no medical choice is made without them.  And that makes patients happy – exercising the right to be involved in decisions about their care. Once educated, patients do tend to select less invasive procedures on average, as Shannon notes, and costs thereby go down as does the risk of medical error or unwanted care. A randomized controlled trial in the New England Journal of Medicine also produced these effects: a shared decision making intervention produced 9.8% fewer inpatient and outpatient surgeries and 11.5% fewer hospital admissions.

Shared decision making makes healthcare better. To my fellow physicians trying to determine whether to test or not to test – include the patient first. Is the patient involved? That is the real first question.

Peter Goldbach is Chief Medical Officer, Health Dialog.

So, read the reviews below and then get involved in your own life.  Ask questions, weigh the options and let your medical expert help you make YOUR decision. 

 

This book includes TONS of definitions and images and is a good read for anyone looking to learn more about kidney disease — whether your a doctor or a recently diagnosed patient. Her perspective is real and her stories will relate with many. The book touches on many topics from related health complications to dealing with nephrologists and maintaining a kidney-friendly diet. If you or someone you know is facing CKD, I highly recommend reading this book. Take experiences from those who have already gone through it and are looking to help.
Gail Rae’s story and book are a terrific resource for anyone facing the challenges of CKD.  “What Is It and How Did I Get It?” is an honest, personal, forthcoming account of what it takes to stay on top of your own health. It’s great that Gail empowered herself by education and learning — resulting in trusting herself.  Hopefully, her story will teach others to take control of their own health by eating the right diet, exercising, and taking the time to understand the myriad of information that comes from the medical world.  She does an excellent job of explaining what happens once someone learns they have kidney disease.  From what happens with every medical exam, test, visit to a doctor, researching medicines, nutrients, causes, body functions, physiology, etc…touching on every aspect in a very helpful way.  This book is a must read for anyone who has any questions about kidney disease, whether it’s personal or for a loved one.
This is a must read for anyone who has kidney disease. I had the privilege of reading Gail’s book and  interviewing her on the radio. For anyone with kidney disease, this is one of the best books around written by someone who has kidney disease. I recommend this book highly!!!!!!!
Gail Rae’s book, What Is it and How Did I Get it?: Early Chronic Kidney Disease provides information about this disease from the patient’s viewpoint. Having dealt with many doctors while dealing with a different health issue, I have learned how important it is to understand what all the tests and procedures mean. From my viewpoint, it’s also important to know how to talk with your doctor and even more importantly in my opinion to know how to get the doctor to talk with you about prognosis, treatments, and any questions you have. Her book gives you the basic understanding about chronic kidney disease and addresses issues that can puzzle and frighten patients. She gives you her experience as a patient as well as information she’s researched trying to find her own answers. A useful resource for anyone dealing with Chronic Kidney Disease.
 This book is wonderful because it explains all you need to know for early stages of ckd and not in medical terms, but in terms that everyone can understand. The author was so passionate about getting the information to others who are going through what she went through as this information was not avaialble to her. Her altruistic motive for this book is also what makes it wonderful. I would definately buy a copy if I were you.
Having lived with autoimmune diseases since my late 20’s, and I know first hand what it’s like to get a new diagnosis.  Even with the internet, it’s hard to get solid, reliable and empathic information.  This book does it all in an easy to read format.  I think this is useful for a person with any new diagnosis because it highlights the issues people wonder and worry about.
 As the daughter of a mother who has early stage CKD, I have to admit at first I panicked at the diagnosis. What exactly did it mean? I was relieved to find this book and even more so relieved to find that it was written in plain English and not Medical-ese. Author Gail Rae has written an easy to follow book not just for the newly diagnosed early stage CKD patient, but, also for their family members and friends. There’s even an entire chapter dedicated to questions raised by friends and family. I highly recommend this book for both the newly diagnosed early CKD AND their family/friends.
 This is an incredibly well-researched, well-written book written by a woman who herself developed kidney disease. Her book provides clear and comprehensive information for all about the care patients need to have, and responds to the fears and concerns of all involved with coping with kidney disease. It is an honest, very personal accounting of her experience, and I found it to be written clearly, providing tons of pertinent information about every facet of how to cope with this illness.
I think Ms. Rae wrote this book for the ordinary person who learns that they will be living with kidney disease from the moment of diagnosis, on. But after reading, I believe that it is also a book that every family member, every friend of someone who has developed kidney disease ought to read as well, in order to better understand what their loved ones are going through. I also believe that this book will benefit every professional in the medical community who deals with patients coping with Kidney Disease. It has helped me, and will help everyone involved with the patient on any level to be better able to understand their patient’s concerns, anxieties, needs and limitations.  For these reasons I think it is a great guide for the medical community as well as for the patient/family/friends, as it can help professionals understand the kind of information their patients need to have in order to take good care of themselves. Don’t pass this book up!
This book is especially good for the newly diagnosed with CKD. So much information in a well written format. The author, a teacher and a writer uses her excellent skills to make this disease easier to understand and “navigate”. Highly recommended. Medical specialists should give this to all of their kidney disease patients.
Thanks for the chance to let you know how others view the book.
Until next week,
Keep living your life!