Memories of Another Sort

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

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This Former Hippy Wannabe Likes HIPAA

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

It’s the Heat AND the Humidity

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

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

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

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

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

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

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

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

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

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

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

The CDC offers the following advice to avoid heat illness:

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

I’ll Sleep When I’m Dead

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I think I need to go to sleep now.

Until next week,
Keep living your life!

Updated

 

 

 

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

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

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

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

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

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

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

Fast Stats

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

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

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

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

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

Until next week,
Keep living your life!

Gluten Free

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

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

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

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

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

 

 

 

 

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

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

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

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

What Foods Have Gluten?

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

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!

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!

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!

 

Never Too Old to Learn

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

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

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

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

Abnormal levels of cholesterol, triglyceride or both

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

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

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

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

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

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

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

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

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

cholestero

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s a pretty big ‘so.’

Until next week,

Enjoy your life!

Medical Individuals

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

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

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

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

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

cjasn

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

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

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

A Change is Gonna Come… Or is It?

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

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

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

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

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

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

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

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

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

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

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

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

Stahl: You’re gonna keep that–

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

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

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

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

IMG_2979

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!