How Did It Get Political?

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

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


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

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

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

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

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

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

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


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

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

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

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

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

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

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

Ratio: Is That Like Rationing?

urine containerA friend called me Friday night wondering what her creatinine/albumin ratio meant since that reading was high on her last blood draw. Actually, she wanted to know if this was something to worry about. After extracting a promise that she would call her doctor with her questions today when her physician’s office opened for business again, I gave her some explanations. Of course, then I wanted to give you the same explanations.

Although the Online Etymology Dictionary tells us both ratio and rationing are derived from the same Latin root – ratio – which means “reckoning, calculation; business affair, procedure,” also “reason, reasoning, judgment, understanding,” they aren’t exactly the same. My old favorite, The Merriam-Webster Dictionary defines ratio at dictionaryhttps://www.merriam-webster.com/dictionary/ratio in the following way: the relationship in quantity, amount, or size between two or more things, as in that of your creatinine and albumin.

As for rationing, if you’re old enough to remember World War II, you know what it means. If you’re not, the same dictionary can help us out again. At https://www.merriam-webster.com/dictionary/rationing, we’re told it’s “a share especially as determined by supply.” Nope, doesn’t work here since we’re not sharing our creatinine or albumin with anyone else. We each have our own supply in our own ratios, albeit sometimes too high or sometimes too low.

What are creatinine and albumin anyway? Let’s see what we can find about creatinine in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease.

“Additional important jobs of the kidneys are removing liquid waste from your body and balancing the minerals in the body. The two liquid waste products are urea which has been broken down from protein by the digestive system and creatinine which is a byproduct of muscle activity.”

Well, what about albumin? This can get a bit complicated. Remember, the UACR (Hang on, explanation of this coming soon.) deals with urine albumin. There’s an explanation in SlowItDownCKD  2016 about what it’s not: serum albumin.

“Maybe we should take a look at serum albumin level. Serum means it’s the clear part of your blood, the part without red or white blood cells. This much is fairly common knowledge. Albumin is not. Medlineplus, part of The National Institutes of Health’s U.S. National Library of Medicine at https://medlineplus.gov/ency/article/003480.htm tells us, ‘Albumin is a protein made by the liver. A serum albumin test measures the amount of this protein in the clear liquid portion of the blood.’ Uh-oh, this is also not good: a high level of serum albumin indicates progression of your kidney disease. Conversely, kidney disease can cause a high level of serum albumin.”

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This is from SlowItDownCKD 2015 and explains what the UACR is and why your albumin-to-creatinine ratio (UAC R) is important:

In recent years, researchers have found that a single urine sample can provide the needed information. In the newer technique, the amount of albumin in the urine sample is compared with the amount of creatinine, a waste product of normal muscle breakdown. The measurement is called a urine albumin-to-creatinine ratio (UACR). A urine sample containing more than 30 milligrams of albumin for each gram of creatinine (30 mg/g) is a warning that there may be a problem. If the laboratory test exceeds 30 mg/g, another UACR test should be done 1 to 2 weeks later. If the second test also shows high levels of protein, the person has persistent proteinuria, a sign of declining kidney function, and should have additional tests to evaluate kidney function.

Thank you to the National Kidney and Urologic Diseases Information Clearinghouse , a service of the NIH, at http://kidney.niddk.nih.gov/kudiseases/pubs/proteinuria/#tests for that information.”

Basically, that means if you have a high UACR once, get your urine retested a week or two later before you even think about worrying, which is what my friend’s doctor confirmed. But do make sure to get that second test so you can be certain your kidney function is not being compromised.

I was thrilled that both my paper and notes from the field about Chronic Kidney Disease Awareness were accepted for Landmark’s Journal for the  Conference for Global Transformation AND then be able to Journal for the Conference for Global Transformationpresent a poster about it during the conference this past weekend. In addition I was lucky enough to have lunch with one of the keynote speakers. Who, you ask? Amy D. Waterman, Ph.D.

This is one important person to us. She has changed the face of pre dialysis and transplant education globally by starting “an educational nonprofit corporation and has been awarded more than $20 million in grants…she has reached tens of thousands of people to date, educating them in the miracle of live organ donation. Last year, Dr. Waterman was invited to the White House to share about the possibility of ending the organ donor shortage.” This material is from the Journal of the 2017 Conference for Global Transformation, Volume 17, No. 1.

This is exactly what we need to do for early and moderate stage CKD. This is what the social media presence, the blogs, and the books are about. And you know what? That’s just.plain.not.enough. Last I heard, I have 107,000 readers in 106 countries. And you know what? That’s just.plain.not.enough. Am I greedy? Absolutely when it comes to sharing awareness of CKD. Do I know how to expand my coverage? Nope…not yet, that is. I am so very open to suggestions? Let me hear them!

K.E.E.P.Lest we forget, this year’s first Path of Wellness Screening will be Saturday, June 17th at the Indo American Cultural Center’s community hall, 2809 W. Maryland Ave., Phoenix, AZ 85017. As they’ve stated, “The free screening events can process up to 200 people.  Their use of point-of-care testing devices provides blood and urine test results in a matter of minutes, which are reviewed onsite by volunteer physicians.  All screening participants are offered free enrollment in chronic disease self-management workshops.  Help is also given to connect participants with primary care resources.  The goals of PTW are to improve early identification of at-risk people, facilitate their connection to health care resources, and slow the progression of chronic diseases in order to reduce heart failure, kidney failure and the need for dialysis.”

Until next week,

Keep living your life!

 

To Wash or Not To Wash

Peggy Rickard belongs to the same Landmark Worldwide Center (an international personal and professional growth, training and development landmarkqrcompany) as I do here in Arizona.  I didn’t know her, but she wanted to perform a service project for one of her Landmark courses and she wanted it to deal with the kidneys. The manager of the center – the ever affable Philip Rand – knew I did “something with kidneys,” so he asked if I would call her.  When I did, it turned out that she has a medical advocacy business, but that had nothing to do with her project.

We had a wonderful conversation.  Here was someone in one of my other communities who spoke my kidney language. Peggy had already contacted The National Kidney Foundation of Arizona and learned from Dr. James Ivie, the Director of Patient Services, that what was really needed was to have the information leaflets about kidney disease and donation translated into Spanish since Hispanics are at a higher risk for kidney disease.

Kidney ArizonaMaybe I can pick out a few words of Spanish here and there, but she needed more. I couldn’t translate the leaflets into Spanish for her and didn’t know anyone who could.  That night, I went to the center for the completion session of The Wisdom Unlimited course in which I had been participating. In a greet-those-you-don’t-know moment, I spoke with Nathaniel (Nat) Garcia II – since he was the person directly in front of me – only to discover he is a missionary… and fluent in Spanish…and more than willing to do the translations.  Problem solved.

That got me to thinking about language. While taking a shower the next morning, the bottle of shampoo I was using caught my eye. It had the words ‘sulfate free’ in large letters on the label.  Hmmm, sulfate looks a lot like sulphur.  Are they related?

After checking a bunch of dictionaries, I decided to use the definition of The Medical Dictionary at http://medical-dictionary.thefreedictionary.com/sulfate since it seemed the simplest to understand.

“a salt of sulfuric acid”

Uh-oh, sulfuric means made of sulfur. Although the spelling may be different, sulfuric acid is highly corrosive. It’s also a mineral… and is used in both waste water treatment and fertilizer creation. Why would shampoo have this as an ingredient in the first place?shampoo

I figured the best person to provide an answer would be a hair stylist so I read Melissa Jongman’s article on http://hubpages.com/style/Sulfates-Are-they-damaging-your-hair-Why-to-opt-for-a-sulfate-free-shampoo

“Sulfates are detergents used to make the shampoo lather. They’re inexpensive to use in shampoos, which explains why more than 90% of shampoos contain them. The most common sulfates used in these shampoos are:

  • Sodium Lauryl Sulphate (SLS)
  • Sodium Laureth Sulphate (SLES)
  • Ammonia Laureth Sulphate (ALS)
  • TEA Lauryeth Sulfate (TEA)
  • Sodium Myreth Sulphate (SMS)”

This was not looking good.  Sulphur is something we, as Chronic Kidney Disease patients, need to avoid. As I explained in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, sulphur can further damage your already damaged kidneys.

Book CoverSo what can we do?  Not washing our hair is obviously not the answer. I googled shampoos without sulfates and came up with a list of 43 at http://sulfatefreeshampoos.org/sulfate-free-shampoo-list/#list. While the latest edit of this list was during this new year, I am not familiar with the editors nor the products. However, you can safely bet that I’ll try them.

Let’s go back to why sulfates are not good for CKD patients for a minute. I stumbled across a CKD education site called quizlet.com. Perusing this site, I found the statement that

“Very late CKD is due to reduced excretion of sulfates and phosphates.”

Of course! That makes perfect sense: as our kidney function declines, we are not excreting as much of these substances as we did before we were lucky enough (ouch!) to develop CKD and they build up.  That’s CKD 101.

A nervous me decided to see what other beauty or health products used sulfates. I discovered it’s used in body wash (Wait! Isn’t sulfate a skin irritant?), toothpaste, and nail polish. That tripped a thought. Didn’t I blog about that?

I used the search function on the blog only to find that that blog dealt with other chemicals in nail polish.  (Gritting teeth and crying out in anguish) Is nothing safe anymore? All right, pick a chemical… any chemical.

Looking at the ingredients in both hair products and nail polish, I chose phthalates. The Centers for Disease Control and Prevention (CDC) at http://www.cdc.gov/biomonitoring/Phthalates_FactSheet.html helped us out with this one:chemistry

“Phthalates are a group of chemicals used to make plastics more flexible and harder to break. … They are used in hundreds of products, such as vinyl flooring, adhesives, detergents, lubricating oils, automotive plastics, plastic clothes (raincoats), and personal-care products (soaps, shampoos, hair sprays, and nail polishes)….

How Phthalates Affect People’s Health

Human health effects from exposure to low levels of phthalates are unknown. Some types of phthalates have affected the reproductive system of laboratory animals. More research is needed to assess the human health effects of exposure to phthalates.”

Maybe the human health effects are unknown and maybe this passes quickly via the urine, but if you have Chronic Kidney Disease, you are not filtering your blood as well as other people.  Why take a chance of making it worse?

Now that I’ve probably made you fearful of using any beauty product on the market, be aware that there are many products without phthalate. Breast Cancer Action (Yes, there seems to be a connection between breast cancer and phthalates.) at http://www.bcaction.org/our-take-on-breast-cancer/environment/safe-cosmetics/phthalate-free-cosmetics/  offers a list of companies which produce phthalate free beauty aids.

DIGITAL_BOOK_THUMBNAILDigital Cover Part 2 redone - Copy

Let’s talk about service and gratitude for just a minute.  While I’ve always believed in service, it’s only since I’ve been diagnosed with Chronic Kidney Disease (way back in in 2008) that I’ve become aware of how very thankful I am for the little things in life – like spreading CKD Awareness by writing this blog, posting some CKD tidbit on Twitter daily, starting an Instagram account for SlowItDownCKD, and offering my books.  Thank YOU for being the readers.

Until next week,

Keep living your life!