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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Smoke Gets In Your Hair

Last weekend I was in Las Vegas renewing my vows to Bear as my brother and sister-in-law renewed their vows to each other. It was their 50th year of marriage, our 5th. I listened to what they had to say to each other during the ceremony and realized that was what I would have said to Bear on our 50th, if we were young enough to be able to count on having a 50th. And then I began to wonder how many people do reach this milestone in their lives.

More than the ceremony, it was the smoke in the casinos, the restaurants, the shops, and the cabs that got me to thinking about this. Even our non-smoking rooms had the scent of cigarettes. I know how much harm smoking can do to my kidneys, but what was this second hand smoke doing to them? If it clung to our hair and clothes, what else was it doing to us?

The very minute I was told I have CKD, I stopped the social smoking I had been doing. I would be surprised if I smoked a whole pack of cigarettes each month back then. But I wasn’t taking any chances on not raising my GFR. It was 39% at diagnose, so the smoking had to stop. Yet, it wasn’t until this past weekend that I became concerned about second hand smoke.

It appears that I’m not the only one concerned about second hand smoke. The National Kidney Fund (NKD) at https://www.kidney.org/blog/staying-healthy/second-hand-smoke-may-be-harmful-kidneys offers the following:

“Secondhand smoking was defined as living with at least 1 person who smoked, or having an elevated level of cotinine (a breakdown product of nicotine) in their blood. The researchers found that active smoking was associated with slightly lower kidney function and higher amounts of protein in the urine. Interestingly, secondhand smoke exposure was also associated with slightly lower kidney function in this study even after taking [into] account differences in age, sex, weight, demographics and parental education level. Differences in kidney function observed in the study were relatively small, but these small differences could have important effects on risk of developing hypertension and chronic kidney disease.”

What makes it worse is that hypertension, or high blood pressure, is one of the two leading causes of CKD. So second hand smoke could lead to CKD itself and/or one of the leading causes of CKD. Either way, it sounds like a losing proposition to me.

Of course, I needed to know more about cotinine. The Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov/biomonitoring/Cotinine_FactSheet.html was able to help me out here:

“Cotinine is a product formed after the chemical nicotine enters the body. Nicotine is a chemical found in tobacco products, including cigarettes and chewing tobacco. Measuring cotinine in people’s blood is the most reliable way to determine exposure to nicotine for both smokers and nonsmokers exposed to environmental tobacco smoke (ETS). Measuring cotinine is preferred to measuring nicotine because cotinine remains in the body longer.

How People Are Exposed to Cotinine

Nicotine enters people’s bodies when they smoke or chew tobacco. When exposed to ETS from nearby smokers, smaller amounts of nicotine enter the body of the nonsmoker. Workers who harvest tobacco and produce tobacco products can also be exposed through their skin.”

While I don’t usually write about younger people and Chronic Kidney Disease, this quote from the Johns Hopkins Bloomberg School of Public Health at https://www.jhsph.edu/news/news-releases/2013/navas-acien-smoking-may-impact-kidney-function-among-adolescents.html caught my eye:

“’Tobacco use and exposure to secondhand tobacco smoke are major health problems for adolescents, resulting in short-term and long-term adverse health effects,’ said Ana Navas-Acien, MD, PhD, senior author of the study and an associate professor with the Bloomberg School’s Department of Environmental Health Sciences. ‘In this nationally representative sample of U.S. adolescents, exposure to tobacco, including secondhand smoke and active smoking, was associated with lower estimated glomerular filtration rates—a common measure of how well the kidneys are working. In addition, we found a modest but positive association between serum cotinine concentrations, a biomarker of tobacco exposure, among first-morning albumin to creatinine ratio. These findings further support the conclusion that tobacco smoke may damage the kidneys.’”

Lower estimated glomerular filtration rates???? No, thank you. I rarely go to casinos or any other place that allows smoking for that matter. I just don’t like the odor. Now I have a much more important reason to avoid such places.

Switching topics here. Something else I rarely mention is CKD cookbooks, probably because I don’t cook that often and firmly believe CKD patients need to eat according to their lab results. Months ago I received one such book in the mail and carefully explained to the author’s representatives that I don’t review CKD cookbooks on the blog. It’s an attractive book and always caught my eye just lying there on the kitchen counter for the last several months. During one of those in-the-house-trying-to-recoup-my-energy days after we got back from Las Vegas, I did the logical thing and picked it up to read.

Susan Zogheib, a registered dietitian with a Master’s in Health Science fulfilled my CKD cookbook dreams in her The Renal Diet Cook for the Newly Diagnosed in that she suggested repeatedly that we, as CKD patients, must work on our diets with our doctors and/or renal dietitians, especially if we have high blood pressure or diabetes. I also like that she clearly made the point that you have to take into account the stage of your CKD, your labs, your concurrent medical problems, and more. This, while including fairly easy recipes for some good looking meals. I never thought I’d like a cookbook. Well, there was the Betty Crocker one pre-CKD when I was a young bride still in college.

My 71st birthday is Friday. Naturally that means it’s time for a book giveaway. My birthday equals your gift. Three is my favorite number, so the first three book giveaway virgins (haven’t won a book before) to offer another bit of information about second hand smoke or CKD cookbooks win one of my CKD books. Sounds fair to me.

Until next week,
Keep living your life!