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!

Advertisements

Long Term, Short, and your Heart

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Well, what about the heart and its diseases?

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

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

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

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

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

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

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

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

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

Until next week,
Keep living your life!

Singapore Knows CKD

I have an online friend, Leong Seng Chen, who lives in Singapore and is highly active in the Chronic Kidney Disease Awareness community there. Last week, I asked if any readers would like to see certain organizations that weren’t already there added to the blogroll – the list of CKD organizations to the right of the blog itself. He mentioned two but one was a Facebook page and the other was for dialysis. I usually write a blog about current Facebook pages once a year and don’t usually write about dialysis.

His request, which I couldn’t honor, got me to thinking about what is going on for CKD patients in Singapore. So, I started poking around.

The Clinical Journal of the American Society of Nephrology (of all places!) looked into this in 2008, a decade ago, and published the following at http://cjasn.asnjournals.org/content/3/2/610.full.

The NKF Singapore Prevention Program presents a unique approach that incorporates a comprehensive multilevel strategy to address chronic kidney disease …. What makes the NKF Singapore program different is that it incorporated a public health approach to preventing ESRD by using primary, secondary, and tertiary prevention initiatives that can intervene at several stages in the progression of kidney disease. These include 1) surveillance of the general population for urinary abnormalities, 2) screening of the general population for clinical conditions that increase the risk of chronic kidney disease, such as diabetes mellitus and hypertension, 3) the institution of a disease management program to facilitate the management of patients with diabetes and hypertension, which are among the leading causes of ESRD in the country, and to a limited extent, 4) tracking of the individuals who participate in the screening program. Thus, both population-based and high-risk prevention strategies were incorporated into the Singapore Prevention Program.

If you think about it for a moment, this is an astoundingly comprehensive approach to awareness, prevention, and treatment.

I was intrigued and looked further. This chart is from Health Exchange/Singapore at https://www.healthxchange.sg/digestive-system/kidney/chronic-kidney-disease-singapore-stats-prevention-tips. As you can see, it includes statistics up to (and including) 2012. That’s still half a decade ago.

I had naively assumed the National Kidney Foundation was an American organization. Here, in the United States, it is. There, in Singapore, it’s a Singaporean organization.

In Singapore, CKD awareness is not just an adult undertaking. There is a bus provided by the NKF that goes to schools, among other places, to educate young children about how to prevent and recognize the disease, as well as what the kidneys do. Somehow, I found that charming and necessary simultaneously. Why don’t we do that in the United States, I wonder. Take a look at https://www.nkfs.org/kidney-health-education-bus/ to see for yourself what I’m talking about here.

The National Registry of Disease Office was founded by the Ministry of Health in 2001. While the most current statistics I could find, they only record Chronic Kidney Failure, or End Stage Chronic Renal Disease (ESRD). According to their website at https://www.nrdo.gov.sg/about-us,

We are responsible for:
● collecting the data and maintaining the registry on reportable health conditions and diseases that have been diagnosed and treated in Singapore
● publishing reports on these health conditions and diseases
● providing information to support national public health policies, healthcare services and programmes

Meanwhile, the statistics from Global Disease Burden Healthgrove are only four years old and give us a better understanding of what’s happening in Singapore as far as CKD. You can choose different filters at http://global-disease-burden.healthgrove.com/l/67148/Chronic-Kidney-Disease-in-Singapore

As they phrase it: These risk factors contributed to, and were thought to be responsible for, an estimated 100% of the total deaths caused by chronic kidney disease in Singapore during 2013.

I hadn’t been aware of just how involved with CKD Singapore is until Leong started telling me. Now, I’m astounded to learn that this country is number four in deaths from our disease.

Just as in the United States, Singapore posts lists of nephrologists, herbal aids, hospital studies, and even medical tourism sites. While I may or may not approve of such listings, they have opened my eyes to the fact that Singapore plays with the big boys when it comes to CKD. Come to think of it, they may even be more developed when it comes to educating the public. Remember those education buses?

Many thanks to Leong Seng Chen, my CKD friend on Facebook this past year and- hopefully – many more years to come.

On another topic entirely, winning a place in Healthline’s Top Six Kidney Disease Blogs two years in a row spurred me on to finally rework both The Book of Blogs: Moderate Stage Chronic Kidney Disease, Parts 1 and 2 into something more manageable: each book will be divided into two books with their own indexes and renamed SlowItDownCKD and the year. Right now I’m working on SlowItDownCKD 2011. Hey, let’s hold the cheering down there.

In addition, all the Kindle versions of each of the SlowItDownCKD books are now $2.99 in order make them more accessible to more people. I’m working on lowering the price for the print books too, but that seems to be more complicated…or maybe I just don’t understand the process yet. I would stick to Amazon.com since B & N.com simply never responds to my attempts to lower the price on any of my books.

By the way, have you heard about this from AAKP? (You can read more about it on their website.)

AAKP has been in the news and across social media lately as public interest continues to build in KidneyWorks – a groundbreaking national initiative we developed in full collaboration with our partners at the Medical Education Institute (MEI). The multiphase initiative aims to identify and address barriers to continued employment for individuals with chronic kidney disease (CKD). Phase I of KidneyWorks involved a consensus roundtable of national experts on kidney disease and workforce experts who convened in Washington, D.C. and the development and public release of a White Paper detailing strategies to help working-age people with non-dialysis chronic kidney disease (CKD) improve their lives, slow CKD progression, and keep their jobs. Phases II and III will involve the development, production and dissemination of strategies and online and mobile tools that help workers, caregivers and employers help achieve the goals of KidneyWorks.

Until next week,
Keep living your life!

Updated

 

 

 

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

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

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

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

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

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

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

Fast Stats

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

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

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

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

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

Until next week,
Keep living your life!

The Other Side of the Coin

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

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

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

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

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

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

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

No, that won’t do. I think we need more of an explanation. This is from SlowItDownCKD 2015:

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

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

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

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

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

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

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

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

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

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

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

Until next week,

Keep living your life!

 

 

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!