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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Running on Empty

For the last two weeks, I’ve not only been a Chronic Kidney Disease patient, but also a bronchitis patient and I am tired. I’m at the point where I can do a little something, say a load of laundry, and then it’s back to bed for a while. Or maybe I can make a meal for Bear (Poor husband, he has sinusitis.), but then back to bed for a while. I know I’m always tired when I’m recuperating, but once and for all, I want to know why.

You don’t have to tell me; I’ll go back to the beginning. I looked for a definition of bronchitis and – I kid you not – found the following one from The Merriam Webster Dictionary at https://www.merriam- webster.com/dictionary/bronchitis: “acute or chronic inflammation of the bronchial tubes.”

We know from the glossary in What Is It and How Did I Get It? Early Stage Chronic Kidney Disease that acute means, “Extremely painful, severe or serious, quick onset, of short duration; the opposite of chronic,” whereas chronic is, “Long term, the opposite of acute.” But “bronchial tubes” in the definition of bronchitis?  Oh, come on. How is that going to help?

Let’s jump back to my English teacher training at Hunter College a millennium ago.  Well, it feels like a millennium ago although it was really only five decades or so ago. That’s where I learned that ‘ial’ is a suffix (a group of related letters at the end of a word that changes its meaning) that means of or about, although The Free Dictionary at thefreedictionary.com/-ial tells me “characterized by” has been added to the definition since I graduated all those years ago.

Wait a minute. I remember quoting The Mayo Clinic at http://www.mayoclinic.com/health/bronchitis/DS00031 on bronchitis when I wrote The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 – which I still intend to separate into two more manageable books if I can just stop getting sick.

“Bronchitis is an inflammation of the lining of your bronchial tubes, which carry air to and from your lungs. Bronchitis may be either acute or chronic.

Often developing from a cold or other respiratory infection, acute bronchitis is very common. Chronic bronchitis, a more serious condition, is a constant irritation or inflammation of the lining of the bronchial tubes, often due to smoking.

Acute bronchitis usually improves within a few days without lasting effects, although you may continue to cough for weeks. However, if you have repeated bouts of bronchitis, you may have chronic bronchitis, which requires medical attention. Chronic bronchitis is one of the conditions included in chronic obstructive pulmonary disease (COPD).

Treatment for bronchitis focuses on relieving your symptoms and easing your breathing.”

That clears up what bronchitis is, but why-oh-why am I so tired as I recuperate? Is it the coughing? The inflamed bronchi?

I turned to Verywell Health at https://www.verywell.com/acute-bronchitis-treatments-770331 looking for an answer. This site is comprised of “experienced doctors, nurses, patient advocates, and other experts, but may be vetted for accuracy by board-certified physicians” according to their webpage. This is what they had to offer:

“Acute bronchitis will make you very tired. This is due to both the infection and the persistent cough. It is important to rest as much as possible when you are sick. Although it may be difficult to sleep well when you have a cough, try not to exert yourself any more than is absolutely necessary so your body has adequate time to recover.”

Well, that’s stating the obvious. That first ten days I was a slug in our bed. Bear, even with his sinusitis, was waiting on me. He said it wasn’t that hard since I only ate so I’d have something in my stomach before taking my medications. I had to remind myself to drink, too.

I’d thought I’d take advantage of being in bed sick by watching movies and reading. Hah! I couldn’t concentrate, my head hurt, and I just wanted to stop coughing.

My daughters call me every day. We never decided upon that or made it a rule, they just do and I revel in it. Yet, I felt so bad that I asked them to text me instead so I wouldn’t have to talk.

I think we can understand how the cough could keep me awake which would make me very tired, but what about the infection? How did that add to the fatigue? Of course, we need to keep in mind that CKD itself can cause fatigue.

According to ABC News in Australia at http://www.abc.net.au/news/health/2015-08-06/how-does-your-immune-system-help-you-fight-colds-and-flu/6650768:

“What’s making you feel lousy?

The symptoms you experience when you come down with a cold or flu are not only the result of the infection, they are also the result of your body’s immune response to the infection.

For example, Dr Burns says: ‘Fever is the body’s response to the virus. Increasing body temperature can inactivate the virus.’

When you get an infection, as well as white cells your body also activates other systems including cytokines (chemical messengers) and the complement system (a series of proteins designed to kill infections).

These trigger inflammation and can cause symptoms like redness, warmth, swelling, pain. So your runny nose is actually caused by a local inflammatory response to the virus.”

So it’s as simple as that. My body was tired from fighting the infection. I guess the easiest answer is sometimes the correct one.

We have been so busy being sick in my house that we’ve ignored both Easter and Passover this year. I hope you haven’t and if you celebrate, it’s been a warm, family oriented celebration for you.

By the way, we have our very first grandchild – a boy – who was born March 30th. You’re right. Of course we have to have a book give away to celebrate! Be the first to wish us Mazel Tov – that means congratulations or best wishes in Yiddish – and win yourself a copy of SlowItDownCKD 2016. As usual, the contest is only open to those who haven’t won a book giveaway before.

I have a friend, one very dear to my heart, who also ends her missives to me with, “Blessed be, my friend.” I don’t think she’d mind my sharing that sentiment with you.

Until next week,

Keep living your life!