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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My Vocabulary’s Expanding

I learned a new word! It’s gastroparesis. I learned it from the Facebook Chronic Kidney Disease support pages. What does it mean? According to the American Heritage Medical Dictionary, it means:

“A disorder characterized by delayed movement of food from the stomach into the small intestine because of impaired stomach motility, resulting in nausea, vomiting, and a feeling of fullness.”

Wait a minute; I forgot to tell you the winners of the Birthday Book Giveaway Contest:

Pamela Thacker’s copy of SlowItDownCKD 2016 is on the way to her. Donna Steely-Arnold, I will be only too glad to send out your copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2, as soon as you email your address to me. Catherine Lombard (Forgive me for referring to you as Carole; she was a famous actress back in the ‘30s.), your prize of SlowItDownCKD 2015 is also on its way to you. Congratulations to each of you on being the first three readers to comment about last week’s blog.

Okey-dokey, back to business. Of course you’re eager to know what gastroparesis has to do with Chronic Kidney Disease. Well, I am anyway.

This is from Healthline at https://www.healthline.com/health/type-2-diabetes/gastroparesis#risk-factors:

“Women with diabetes have a high risk for developing gastroparesis. Other conditions can compound your risk of developing the disorder, including previous abdominal surgeries or a history of eating disorders.

Diseases and conditions other than diabetes can cause gastroparesis, such as:

  • viral infections
  • acid reflux disease
  • smooth muscle disorders

Other illnesses can cause gastroparesis symptoms, including:

  • Parkinson’s disease
  • chronic pancreatitis
  • cystic fibrosis
  • kidney disease
  • Turner’s syndrome”

Right off the bat we can see a connection… diabetes. Remember that diabetes is the leading cause of CKD. Now look toward the bottom of this incomplete list of risk factors…kidney disease. Uh-oh.

I jumped right over to the MayoClinic at https://www.mayoclinic.org/diseases-conditions/gastroparesis/symptoms-causes/syc-20355787 for an explanation:

“Certain medications, such as opioid pain relievers, some antidepressants, and high blood pressure and allergy medications, can lead to slow gastric emptying and cause similar symptoms. For people who already have gastroparesis, these medications may make their condition worse.”

You remembered! Yes, high blood pressure is the second most common cause of CKD. Usually if you have hypertension, you take medication to control it. Sometimes, you take the same medication to help control your CKD even if you don’t have hbp.

According to WebMD at https://www.webmd.com/a-to-z-guides/tc/chronic-kidney-disease-medications, the following medications which are usually prescribed if you have hbp may also be prescribed if you have CKD with or without high blood pressure:

ACE inhibitors and ARBs. These may be used if you have protein in your urine (proteinuria) or have heart failure. Regular blood tests are required to make sure that these medicines don’t raise potassium levels (hyperkalemia) or make kidney function worse.”

I still wasn’t satisfied that I understood how the CKD and gastroparesis are connected so I delved further. The Cleveland Clinic at https://health.clevelandclinic.org/2015/09/gastroparesis-know-the-risk-factors-for-this-mysterious-stomach-condition/ was a bit helpful:

“If you have diabetes, gastroparesis can cause it to be poorly controlled. Severe gastroparesis makes it difficult to manage your blood sugar.”

The American Diabetes Association at http://www.diabetes.org/living-with-diabetes/complications/gastroparesis.html further explains:

“The vagus nerve controls the movement of food through the digestive tract. If the vagus nerve is damaged or stops working, the muscles of the stomach and intestines do not work normally, and the movement of food is slowed or stopped.

Just as with other types of neuropathy, diabetes can damage the vagus nerve if blood glucose levels remain high over a long period of time. High blood glucose causes chemical changes in nerves and damages the blood vessels that carry oxygen and nutrients to the nerves.”

Maybe we need to understand why we have to manage our blood sugar in the first place.

“Blood sugar, or blood glucose, is sugar that the bloodstream carries to all the cells in the body to supply energy. Blood sugar or blood glucose measurements represent the amount of sugar being transported in the blood during one instant.

The sugar comes from the food we eat. The human body regulates blood glucose levels so that they are neither too high nor too low. The blood’s internal environment must remain stable for the body to function. This balance is known as homeostasis.”

Thank you for that information, MedicalNewsToday at https://www.medicalnewstoday.com/articles/249413.php. Diabetes is a condition in which your blood sugar is too high… and it can be one of many causes of gastroparesis.

Apparently, gastroparesis is of more concern if you are on dialysis. I know, define dialysis. Let’s take a look at the definition MedicineNet at https://www.medicinenet.com/script/main/art.asp?articlekey=2980 offers.

“The process of removing waste products and excess fluid from the body. Dialysis is necessary when the kidneys are not able to adequately filter the blood.”

And how does gastroparesis affect dialysis patients? Dr. William F. Finn, Professor of Medicine, University of North Carolina School of Medicine; Attending Physician, University of North Carolina Hospitals, Chapel Hill explained during an interview. He used terms that we, as laypeople, can readily understand.

“It has been known for many years that as patients develop progressively severe CKD, their condition may be complicated by nutritional deficiency and even overt malnutrition due to the gradual loss of appetite and inadequate caloric and protein intake…. Indeed, there is evidence that the intake of calories, including protein, decreases as renal insufficiency advances…. As a consequence, in patients with advanced CKD and in those treated with chronic hemodialysis or peritoneal dialysis, there is a high prevalence of what is referred to as “protein-energy malnutrition.” This condition may involve up to 40% or more of the patients and is an important issue because there is a strong association between malnutrition and increased risk of morbidity and mortality…. In fact, in patients undergoing dialysis, “undernutrition” is one of the most common risk factors for adverse cardiovascular events and death…. It has been demonstrated repeatedly and consistently that a low serum albumin level and decreased protein intake are strongly associated with increased mortality in patients with CKD….”

You can read the entire interview on Medscape at https://www.medscape.org/viewarticle/545157.

Until next week,

Keep living your life!