All of Me, uh, Us

When I was a little girl, I liked to listen to my father whistle ‘All of Me,’ written by Marks and Simon in 1931 when Charlie, my father, was just 16. Only a few years later, it became a sort of love language for my mother and him. Enter a former husband of my own and my children. When my folks visited from Florida and my then husband’s side of the family journeyed over to Staten Island from Brooklyn to visit them, they all sang the song with great emotion. (By then, Bell’s palsy had robbed my father of the ability to whistle.)

To this day, I start welling up when I hear that song. But then I started thinking about the lyrics:

“All of me
Why not take all of me?”

Suddenly, it popped. For us, those with chronic kidney disease, it should be:

“All of us

Why not take all of us?”

For research purposes. To “speed up health research breakthroughs.” For help in our lifetime. To spare future generations whatever it is we’re suffering… and not just for us, but for our children… and their children, too.

The National Institutes of Health has instituted a new research program for just that purpose, although it’s open to anyone in the U.S. over the age of 18 whether ill with any disease or perfectly healthy. While only English and Spanish are the languages they can accommodate at this time, they are adding other languages.

I’m going to devote most of the rest of this blog to them. By the way, I’m even more inclined to be in favor of this program because they launched on my first born’s birthdate: May 6. All of Us has its own inspiring welcome for you at https://launch.joinallofus.org/

This is how they explain who they are and what they intend to do:

“The goal is to advance precision medicine. Precision medicine is health care that is based on you as an individual. It takes into account factors like where you live, what you do, and your family health history. Precision medicine’s goal is to be able to tell people the best ways to stay healthy. If someone does get sick, precision medicine may help health care teams find the treatment that will work best.

To get there, we need one million or more people. Those who join will share information about their health over time. Researchers will study this data. What they learn could improve health for generations to come. Participants are our partners. We’ll share information back with them over time.”

You’ll be reading more about precision medicine, which I’ve written about before, in upcoming blogs. This is from All of Us’s website at https://www.joinallofus.org/en, as is most of the other information in today’s blog, and makes it easy to understand just what they are doing.

How It Works

Participants Share Data

Participants share health data online. This data includes health surveys and electronic health records. Participants also may be asked to share physical measurements and blood and urine samples.

Data Is Protected

Personal information, like your name, address, and other things that easily identify participants will be removed from all data. Samples—also without any names on them—are stored in a secure biobank.

Researchers Study Data

In the future, approved researchers will use this data to conduct studies. By finding patterns in the data, they may make the next big medical breakthroughs.

Participants Get Information

Participants will get information back about the data they provide, which may help them learn more about their health.

Researchers Share Discoveries

Research may help in many ways. It may help find the best ways for people to stay healthy. It may also help create better tests and find the treatments that will work best for different people.

I’m busy, too busy to take on even one more thing. Or so I thought. When I read the benefits of the program (above) and how easy it is to join (below), I realized I’m not too busy for this and it is another way to advocate for Chronic Kidney Disease awareness. So I joined and hope you will, too.

Benefits of Taking Part

Joining the All of Us Research Program has its benefits.

Our goal is for you to have a direct impact on cutting-edge research. By joining the program, you are helping researchers to learn more about different diseases and treatments.

Here are some of the benefits of participating in All of Us.

Better Information

We’re all human, but we’re not all the same. Often our differences—like age, ethnicity, lifestyle habits, or where we live—can reveal important insights about our health.

By participating in All of Us, you may learn more about your health than ever before. If you like, you can share this information with your health care provider.

Better Tools

The goal of the program is better health for all of us. We want to inspire researchers to create better tools to identify, prevent, and treat disease.

You may also learn how to use tools like mobile devices, cell phones and tablets, to encourage healthier habits.

Better Research

We expect the All of Us Research Program to be here for the long-term. As the program grows, the more features will be added. There’s no telling what we can discover. All thanks to participants like you.

Better Ideas

You’re our partner. And as such, you are invited to help guide All of Us. Share your ideas and let us know what works, and what doesn’t.

Oh, about joining:

Get Started – Sign Up

Here’s a quick overview of what you’ll need to do to join.

1

Create an Account

You will need to give an email address and password.

2

Fill in the Enrollment and Consent Forms

The process usually takes 18-30 minutes. If you leave the portal during the consent process, you will have to start again from the beginning.

3

Complete Surveys and More

Once you have given your consent, you will be asked to complete online health surveys. You may be asked to visit a partner center. There, you’ll be asked to provide blood and urine samples and have your physical measurements taken. We may also ask you to share data from wearables or other personal devices.

Before I leave you today, I have – what else? – a book give away. The reason? Just to share the joy that’s walked into my life lately. It’s easy to share the troubles; why not the joys? If you haven’t received one of my books in a giveaway before, all you have to do is be the first person to let me know you want this copy of SlowItDownCKD 2017.

 

I need to get back to that online health survey for All of Us now.

Until next week,

Keep living your life!

 

Published in: on May 21, 2018 at 10:38 am  Leave a Comment  
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Black and Blue is Back

I looked in the mirror and what did I see? Black and blue under my eyes staring back at me… and then I realized I’d been seeing them for ages. Hmmm, what could be causing them?

I researched and researched and researched and didn’t really find any answers that relate to me, but did find some that do relate to Chronic Kidney Disease. The biggie was anemia. Let’s go all the way back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease for the definition:

“Anemia: A blood disease in which the number of healthy red blood cells decreases”

Need some basics? In SlowItDownCKD 2011, it was explained that the red blood cells are the ones that contain the hemoglobin which carries oxygen to your cells. There’s a bit more about hemoglobin in The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2. There we learned that it’s a protein and that it is responsible for the red color of your blood.

Well, what’s this got to do with CKD? This explanation from The National Kidney and Urologic Diseases Information Clearinghouse at http://kidney.niddk.nih.gov/kudiseases/pubs/anemia/anemia_508.pdf which appeared in SlowItDownCKD 2015 will explain:

“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.”

A little more about erythropoietin from the Lung Institute at https://lunginstitute.com/blog/oxygen-kidneys/:

Red Blood Cell Regulation: When the kidneys do not receive enough oxygen, they send out a distress signal in the form of erythropoietin, a hormone that stimulates bone marrow to produce more oxygen-carrying red blood cells.”

Uh-oh, what happens if we have fewer red blood cells – or anemia? I popped over to SlowItDownCKD 2016 to find the answer.

“If you have fewer red blood cells, you are carrying less oxygen to your vital organs… which are the following according to livescience at http://www.livescience.com/37009-human-body.html

‘The human brain….The human heart…. The job of the kidneys is to remove waste and extra fluid from the blood. The kidneys take urea out of the blood and combine it with water and other substances to make urine. The liver….The lungs are responsible for removing oxygen from the air we breathe and transferring it to our blood where it can be sent to our cells. The lungs also remove carbon dioxide, which we exhale.’

Okay, so the lungs are responsible for gathering oxygen from the air (for one thing) and healthy kidneys produce red blood cells to carry oxygen to your vital organs (again, for one thing). CKD reduces the oxygen you have since it reduces your red blood cell production….”

Let’s get back to the seeming black and blue under our eyes. While Dr. Mercola is not necessarily my medical hero, I did find an interesting explanation on his website at https://articles.mercola.com/what-causes-dark-circles-under-eyes.aspx:

“Some of the causes believed to contribute to hyperpigmentation around the periorbital area are temporary and resolve after the irritant has been removed. Possible temporary and permanent triggers for periorbital hyperpigmentation include….”

Sun exposure Genetic pigmentation Dermal melanocytosis
Allergic dermatitis Contact dermatitis Edema (swelling)
Drugs Aging Hormones

According to the Merriam-Webster Medical Dictionary, periorbital means “of, relating to, occurring in, or being the tissues surrounding or lining the orbit of the eye, “ and hyperpigmentation is “the production of excess melanin causing dark spots on the skin.” This is not exactly what we were looking for, but notice the last item in the third column: hormones. Erythropoietin is a hormone.

Maybe it has to do with the reduction of red blood cells which means less hemoglobin which means less red color. To my way of thinking, that means your veins would show up as blue. I’m conflicted here. I can’t decide if that’s just plain silly since I’ve never seen a red vein through my skin or if this might be the germ of a thought to be expanded upon.

EyeHealthWeb at https://www.eyehealthweb.com/dark-circles-under-eyes/  lists many possible causes of these black and blue or dark rings under our eyes.

  • Heredity. Dark circles under the eyes can appear in childhood, and are often an inherited trait. Some children will outgrow them, but others will not.
  • Allergies. Nasal congestion can dilate the blood vessels that drain from the area around your eyes, causing them to darken.
  • Sleep deprivation is the most common cause, and the easiest to prevent, but …
  • Oversleeping can also cause dark eye circles.
  • Eczema
  • Stress
  • As we get older, our skin becomes thinner.
  • Iron deficiency can prevent the blood from carrying sufficient oxygen to eye tissues.
  • Minor trauma that causes the appearance of a black eye 

Additional causes for dark circles under your eyes:

  • Crying
  • Lifestyle. Excessive smoking or drinking can contribute to under-eye circles. Also, people who drink too much coffee or who use cocaine or amphetamines may have difficulty getting enough sleep.
  • Fluid retention, as may occur with pregnancy or weight gain.
  • Skin pigmentation abnormalities. The skin around the eyes is thinner, which is why your blood vessels are more readily visible through it.
  • Excessive exposure to the sun. Sun exposure encourages your body to produce more melanin.
  • Age. As we get older, we lose some of the fat and collagen surrounding our eyes. This loss, combined with the thinning of our skin, magnifies the appearance of dark eye circles.
  • Mononucleosis can cause the eyes to appear puffy and swollen. This is due partly to the fatigue that people feel when they are suffering from it, and partly because this illness causes a yellowing of the eyes and the skin around them (this is called jaundice).
  • Periorbital cellulitis. This is a bacterial infection of the eyelid or eyelids. If it is promptly treated with antibiotics, however, it is nothing to worry about.
  • Excess salt in the diet causes fluid retention throughout your body—including underneath your eyes.

Gulp! Iron deficiency (which may be a kind of anemia), excessive smoking or drinking, certain drugs, excess salt. Sound familiar? These are some of the things we’re told to avoid as CKD patients.

Until next week,

Keep living your life!

Here, There, and Everywhere

IMG_2867We did it! This attempt at our delayed honeymoon was a real honeymoon… only one with my brothers and sisters-in-law which made it even better in my book. (Like that play on words?)

We couldn’t take a honeymoon right after we married because I got sick. Thank you so much compromised immune system for that. Then Bear had surgery that laid him up for a long, long, long time or so it seemed.

We finally planned our delayed honeymoon to Vancouver, British Columbia (Thanks for the help in planning that part, Denis Beaudry.) and Alaska. Thank you for the help in planning that part, Mark Rosen.

Bear always wanted to cruise the Inside Passage and ride the Alaska Railroad. I always wanted to see the B.C. distant family talked about. We got our wishes but IMG_1320couldn’t enjoy much of them due to Bear contracting cellulitis on the second day. That meant IVs and high fevers. Trash delayed honeymoon attempt #1.

But then, due to my sister-in-law’s generosity in inviting us to try a honeymoon again by joining my brother and her on their 48th anniversary/her birthday cruise, we finally got our long awaited honeymoon. We’d been married 2 ½ years by this time.

To round out the fun, brother #2 and his wife decided to join us.  Although various combinations of us have been together throughout the years, the five of us hadn’t all been together in 27 years!!!!! Bear was the most welcomed newcomer to the family.

oasis of the seasRoyal Caribbean International did it up, well, royally. Of course, this was only my second cruise, but my family is cruiseophiles and they told me this was so. I took a writer’s liberty to make up a word here. It means lover of cruises. Feel free to steal it.

So, what does any of this have to do with Chronic Kidney Disease, you ask? We did go to three different countries, although there was only a limited shore excursion in each and we saw only what tourists see in each. (Here comes my favorite phrase.) That got me to thinking. I wondered what CKD treatment was like in each of these countries.

Our first port of call was Labadee, Haiti. I’m told this is a very dangerous area. The comedian onboard likened the tourist area to Jurassic Park in that it is totally fenced in to protect the tourists and keep out the local people.  Funny, the cruise line referred to it as ‘a private beach.’ I guess it’s all a matter of prospective.

We took a catamaran ride in order to see more than the ‘private beach’ allowed and were repeatedly cautioned not to leave the encampment that was the tourist attraction, other than these sanctioned boat rides.  That’s also where we learned there are no police there. But was there CKD treatment?What is it

 

According to National Institutes of Health (in the background material of the abstract of a small study of CKD in the rural areas of Haiti):

In the Caribbean region chronic kidney disease (CKD) is an increasing challenge. High rates of non-communicable and infectious diseases and the rise in people suffering from diabetes and hypertension explain the observed and further expected increase of CKD. However, data about the magnitude of the problem are rare and in some countries such as Haiti completely lacking.

You can read a little bit more at http://www.ncbi.nlm.nih.gov/pubmed/25535765

So what data might there be? I did find a blog about another small study at http://blog.smw.ch/chronic-kidney-disease-in-a-rural-region-of-haiti/. However, this contained cautions about the population of the study and the fact that – again – only one rural region was studied. They did have some interesting, although not surprising, results.

CKD was found in 27% of the study population. Risk factors independently associated with CKD were: hypertension, HIV infection and age >60 yr.

What makes it worse is that Haiti has 80% unemployment and very few people have health insurance.

IMG_1398Maybe our next port of call, Falmouth in Jamaica, was more involved with CKD.

I went to http://www.worldlifeexpectancy.com/jamaica-kidney-disease for the following information.

According to the latest WHO [Reminder: that’s the World Health Organization.] data published in may (sic) 2014 Kidney Disease Deaths in Jamaica reached 550 or 3.08% of total deaths. The age adjusted Death Rate is 20.00 per 100,000 of population ranks Jamaica #37 in the world.

CKD is the ninth leading cause of death in Jamaica. It’s the eighth leading cause of death here in the United States. It’s a teeny country; ours is not. Draw your own conclusions.

Although we were again warned not to wander off by ourselves since this was also considered a dangerous country, we were able to tour a 1700s plantation. Just as Haiti, it was absolutely beautiful, but again – we saw only a few roads and what we were allowed to see. One of my brothers and his wife took a walking food tour and were appalled at how poorly the inhabitants of the country lived. Remember, we were only tourists formulating opinions on our quick view of each of these countries.

I was quite taken with the direct approach of The West Indian Medical Journal’s assessment of CKD in the Caribbean, although they do not especially mention labadee and falmouthJamaica.

There are not enough nephrologists in Caribbean countries and some countries may lack a nephrology service. Coordinating patient care between specialist and primary care physicians is essential in managing the burden of this growing disease.

You can read more at http://caribbean.scielo.org/scielo.php?script=sci_arttext&pid=S0043-31442011000400017

The only other information I could find was from 1999. I felt 16 years was a long time ago, too long to include that information here.

My conclusion is that these developing countries are well aware of the increasing incidence of CKD among their population, why it’s there, and how much of a financial burden it represents. You need to remember that both countries have a predominantly black population (although there’s been plenty of intermarriage) which historically has a higher incidence of hypertension, one of the leading causes of CKD.

Oh boy, looks like we’ll have to leave our last port of call – Cozumel in Mexico – until next week.

Until next week,

Keep living your life!

On the Sea, On the Sea, On the Beautiful Sea – with apologies to lyricist Harold R. Atteridge

I’ve mentioned a time or two (Oh, okay, much more than that.) we’d been to Vancouver and Alaska recently on what was supposed to have been our over two year delayed honeymoon.  It was soon downgraded to our ‘woebegone vacation.’ I never told you why. IMG_1320

It was so very unfair. Bear has always wanted to take me to see Alaska. He’d been sent there as a young soldier. Obviously, the beauty of the state impressed him. And he’s been talking to me about taking a cruise for the entire time I know him. Having lived on islands my whole life until I moved to Arizona, ferries were enough of ‘cruising’ for me, but my love wanted to go on one so badly. I was the one who wanted to see Vancouver – simply because I’d never been there – so that’s why we sailed from there.

What happened was unexpected…and scary. On our second day in Vancouver, it became clear Bear couldn’t walk and was in pain. We just figured it was some sort of inflammation where he’d had foot surgery two years ago. This had happened before. We got a knee scooter (People in Vancouver thought it was a new form of transportation.), he took pain meds, and we figured we had it covered. So we boarded our cruise ship.

That may have been a mistake. Two days into the cruise, Bear started running a high temperature and was in agony.  Off we went to sick bay as a cruisecruise ship’s infirmary is commonly called. That’s where we discovered he had a dangerous infection called cellulitis that was rapidly taking over his leg. It had already risen from his foot to above his knee.

According to WebMD at http://www.webmd.com/skin-problems-and-treatments/tc/cellulitis-topic-overview

Cellulitis is a common skin infection that happens when bacteria spread through the skin to deeper tissues. Most cases are mild and last several days to a couple of weeks. But cellulitis can sometimes progress to a more serious infection, causing severe illness that affects the whole body (sepsis) or other dangerous problems.

It looked like he was heading toward sepsis. Bear was ordered to stay in bed except for the twice a day he returned to sick bay for IVs (That’s an intravenous drip feed: a needle is inserted into your vein via the arm and whatever is in the bag attached to that needle is dripped into your vein.) of Rocephin.

Here’s when Bear’s cellulitis treatment becomes relevant to Chronic Kidney Disease patients. The generic name for Rocephin is ceftriaxone it may be harmful to the kidneys.  It’s a powerful antibiotic used

to treat many kinds of bacterial infections, including severe or life-threatening forms such as meningitis.

You can read more about it on Drugs.com at http://www.drugs.com/mtm/ceftriaxone-injection.html

The Skeptical Scalpel, a doctor’s blog at http://skepticalscalpel.blogspot.com/2012/10/is-normal-saline-bad-for-kidneys.html, offered some insight about the saline solution Bear was given to rehydrate him. Again, I’m looking at this solely from the CKD patient’s viewpoint:

Is normal saline bad for the kidneys? Yes.Skeptical Scalpel

To be fair, in the particular blog I viewed, it was “renal failure in critically ill ICU patients” that was being referred to in connection with saline drips.

Ketorolac Tromethamine was also being administered. What’s that you ask?

Ketorolac is a nonsteroidal anti-inflammatory drug (NSAID) similar to ibuprofenindomethacinnaproxen, and many others. Ketorolac blocks prostaglandin synthesis. Prostaglandins have many effects in the body including their role in pain and inflammation.

It’s a NSAID, boys and girls, something we – as CKD patients – are warned off.  Thanks are in order to http://www.medicinenet.com/ketorolac_tromethamine-ophthalmic/article.htm for the definition.

All the while, his blood pressure was being monitored. Of course, an x-ray was taken to see if there were a break and two blood tests were administered two days apart.  All good medical practice.blood draw

On the second day of onboard treatment, Augmentin, another antibiotic, was added to Bear’s treatment. This is safe for CKD patients… unless your kidney function is less than 30%. Then the dosage needs to be adjusted. The manufacturers themselves offer this information.

It took four days for Bear to be well enough for the IVs to be discontinued. He was worn out. The cruise was a bust, but he was getting better.

We left the ship with a firm admonition from the doctor to see Bear’s orthopedist (who referred us to our pcp since this was not a surgical problem) as soon as we got home and enough antibiotic to last until we left Alaska. Of course, our doctor had to be on vacation herself just then, so Bear saw someone who didn’t know him except from reading his medical records.

Being one smart man and remembering that the ship’s doctor had said he was worried that the infection may have settled around the hardware that was inserted during his previous foot surgery, Bear figured foot = podiatrist.  It’s a good thing he did. She immediately sent him for an ultrasound for what she feared might be a blood clot at the site of the painful bump on his leg from one of the two times he fell. Not being able to walk can be tricky on a rolling ship.  Luckily, there wasn’t one.Bear's foot

We had to face the obvious. Bear was going to have to quit his dream part-time job in a wood workers’ store. But wait! One door closes and another opens. Now he can work full time in his shop.  He can rest whenever his foot starts to bother him and then just put his shop boots back on and go back to work. He can also not work in the shop if he so chooses… and he doesn’t have to call in sick.

The point of the blog is that while anyone can mysteriously become ill at any time, the rules are different for us as CKD patients. Pay attention to your compromised immune system and what drugs your doctors are trying to give you.  If I don’t recognize the drug, I run it by my wonderful nephrologist who never fails to respond to my texts quickly.

You know, this blog started as publicity for my books.  Now I become so involved with whatever the topic is that I often forget that. I hope you don’t. As much as I’d like to sell you some books, I also want you to know you can borrow them from the Kindle Owners’ Lending Library for free. That’s at Amazon.com. You can also ask the librarian at your local brick and mortar library to order my books.

Book Cover

Until next week,

Keep living your life!IMG_1398