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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Movin’ On Up

Considering my family’s history, I’m vigilant about having colonoscopies. This year, however, there was an additional test – an endoscopy. You may have heard of this as an upper endoscopy, EGD or esophagogastroduodenoscopy. The names are interchangeable. Whatever you call it, I was intrigued.

What is an endoscopy, you ask. According to the Mayo Clinic at https://www.mayoclinic.org/tests-procedures/endoscopy/basics/why-its-done/PRC-20020363:

An upper endoscopy is used to diagnose and, sometimes, treat conditions that affect the upper part of your digestive system, including the esophagus, stomach and beginning of the small intestine (duodenum).

Okay, but that doesn’t explain what the procedure is. The National Institute of Diabetes and Digestive and Kidney Diseases at https://www.niddk.nih.gov/health-information/diagnostic-tests/upper-gi-endoscopy can help us out here:

Upper GI endoscopy is a procedure in which a doctor uses an endoscope—a flexible tube with a camera—to see the lining of your upper GI tract. A gastroenterologist, surgeon, or other trained health care professional performs the procedure, most often while you receive light sedation to help you relax.

Relax? I was out like a light. First I was being shown was the device that was going to hold my mouth open and hold the tube that would be going down my throat, the next second I awoke in my room… or so it seemed.

Now the biggie: why have an endoscopy in the first place? I went to Patient Platform Limited at https://patient.info/health/gastroscopy-endoscopy and found this,

A gastroscopy may be advised if you have symptoms such as:

• Repeated (recurring) indigestion.
• Recurring heartburn.
• Pains in the upper tummy (abdomen).
• Repeatedly being sick (vomiting).
• Difficulty swallowing.
• Other symptoms thought to be coming from the upper gut.

The sort of conditions which can be confirmed (or ruled out) include:

• Inflammation of the gullet (oesophagus), called oesophagitis. The operator will see areas of redness on the lining of the oesophagus.
• Stomach and duodenal ulcers. An ulcer looks like a small, red crater on the inside lining of the stomach or on the first part of the gut (small intestine) known as the duodenum.
• Inflammation of the duodenum (duodenitis) and inflammation of the stomach (gastritis).
• Stomach and oesophageal cancer.
• Various other rare conditions.

Wait a minute. I can already hear you asking what that has to do with Chronic Kidney Disease. Claire J. Grant, from the Lilibeth Caberto Kidney Clinical Research Unit in London, Canada, and her colleagues’ answer was reported in PhysciansEndoscopy at http://www.endocenters.com/chronic-kidney-disease-adversely-affects-digestive-function/#.WiLwjrpFxaQ,

“CKD adversely affects digestive function,” the authors write. “Abnormalities in digestive secretion and absorption may potentially have a broad impact in the prevention and treatment of both CKD and its complications.”

Not good. We know that CKD requires close monitoring and life style changes. This may be another facet of the disease to which we need to pay attention.

I had some biopsies while I was under sedation. Nope, didn’t feel a thing.

But I now know I have gastritis and an irregular Z-line. The silver lining here is that I don’t have Helicobacter pylori or H. pylori, a type of bacteria that infects the stomach which can be caused by chronic gastritis. Mine seems to be the food caused kind. Generally it’s alcohol or caffeine, spicy foods, chocolate, or high fat foods that can cause this problem. I don’t drink, eat spicy or high fat foods, and rarely eat chocolate, but nooooooooooooooooo, please don’t take away those two luscious cups of coffee a day.

I wasn’t sure what this Z-line thing was so started poking around on the internet, since I didn’t catch it before seeing the gastroenterologist for my after visit appointment. Dr. Sidney Vinson, University of Arkansas for Medical Sciences/UAMS College of Medicine explained:

This refers to the appearance of the tissue where the esophagus and stomach meet. The z-line is a zig-zag line where these 2 different type tissues meet. Occasionally it can be irregular and protrude more into the esophagus and not have the typical appearance. This is generally a benign condition but can occasionally represent mild barrett’s esophagus, a precancerous change caused by reflux.

My source was HealthTap at https://www.healthtap.com/user_questions/198269-in-regards-to-upper-gi-endoscopy-what-is-an-irregular-z-line

Apparently my normal duodenum was biopsied to see if my doctor could find a reason for the pain I was experiencing in the upper stomach. Well, it was more discomfort than pain, but he wanted to be certain there wasn’t an ulcer… and there were no ulcers. Yay!

Hmmm, I have gastritis which is an inflammation and CKD, which is an inflammatory disease. Which came first? Did it matter? If I treat one will the other improve? I’ve been following the renal diet for all nine years since my diagnose and have made the appropriate life style changes, too.

What more could I do? There’s the ever present to struggle to lose weight. That could help. I wasn’t willing to take more medication as my gastroenterologist understood and accepted. I was already taking probiotics. I examined the little booklet produced by Patient Point that I was given more closely ignoring all the advertisements for medication.

Look at that. It seems sleeping on your left side can help. “Since your stomach curves to your left, part of it will be lower than your esophagus.” I can do that, although I wonder if it will be awkward while wearing the BiPap.

I also learned that skipping late night snacks and eating smaller meals would be helpful since there would be less acid produced by smaller meals and I wouldn’t have to deal with acid while I slept if I stopped eating at least two hours before bedtime. Acid is produced to help digest your food.

For Thanksgiving, I was part of a video produced by Antidote Me (the clinical trial matching program I wrote about several weeks ago). The topic was What I Am Thankful to Medical Research for. I think I can safely add endoscopy to that list. https://drive.google.com/file/d/1Mwv-vBRgzRFe8-Mg6Rs7uUIXMOgOMJHX/view

I was also invited to participate in two separate book signings and have a video from one of them. I’ll post it as soon as I can figure out how since I don’t own the rights yet. Oh, I feel a new year’s resolution coming on – learn more about the technology I need for my writing.

Until next week,
Keep living your life!

This Former Hippy Wannabe Likes HIPAA

Each day, I post a tidbit about, or relating to, Chronic Kidney Disease on SlowItDownCKD’s Facebook page. This is the quote from Renal and Urology News that I posted just a short while ago:

“Patients with stage 3 and 4 chronic kidney disease (CKD) who were managed by nephrology in addition to primary care experienced greater monitoring for progression and complications, according to a new study.”

My primary care physician is the one who caught my CKD in the first place and is very careful about monitoring its progress. My nephrologist is pleased with that and feels he only needs to see me once a year. The two of them work together well.

From the comments on that post, I realized this is not usual. One of my readers suggested it had to do with HIPPA, so I decided to look into that.

The California Department of Health Care Services (Weird, I know, but I liked their simple explanation.) at http://www.dhcs.ca.gov/formsandpubs/laws/hipaa/Pages/1.00WhatisHIPAA.aspx defined HIPPA and its purposes in the following way:

“HIPAA is the acronym for the Health Insurance Portability and Accountability Act that was passed by Congress in 1996. HIPAA does the following:

• Provides the ability to transfer and continue health insurance coverage for millions of American workers and their families when they change or lose their jobs;
• Reduces health care fraud and abuse;
• Mandates industry-wide standards for health care information on electronic billing and other processes; and
• Requires the protection and confidential handling of protected health information”

Got it. Let’s take a look at its last purpose. There is an infogram from HealthIT.gov at https://www.healthit.gov/sites/default/files/YourHealthInformationYourRights_Infographic-Web.pdf  which greatly clarifies the issue. On item on this infogram caught my eye:

“You hold the key to your health information and can send or have it sent to anyone you want. Only send your health information to someone you trust.”

I always send mine to one of my daughters and Bear… and my other doctors if they are not part of the hospital system most of my doctors belong to.

I stumbled across National Conference of State Legislatures at http://www.ncsl.org/research/health/hipaa-a-state-related-overview.aspx and learned more than I even knew existed about HIPAA. Take a look if you’d like more information. I finally tore myself away from the site to get back to writing the blog after following links for about an hour. It was fascinating, but not germane to today’s blog.

Okay, so sharing. In order to share the information from one doctor that my other doctors may not have, I simply fill out an Authorization to Release Medical Information form. A copy of this is kept in the originating doctor’s files. By the way, it is legal for the originating doctor to charge $.75/page for each page sent, but none of my doctors have ever done so.

I know, I know. What is this about doctors being part of the hospital system? What hospital system? When I first looked for a new physician since the one I had been using was so far away (Over the usual half-an-hour-to-get-anywhere-in-Arizona rule), I saw that my new PCP’s practice was affiliated with the local hospital and thought nothing of it.

Then Electronic Health Records came into widespread use at this hospital. Boom! Any doctor associated with that hospital – and that’s all but two of my myriad doctors – instantly had access to my health records. Wow, no more requesting hard copies of my health records from each doctor, making copies for all my other doctors, and then hand delivering or mailing them. No wonder I’m getting lazy; life is so much easier.

Back to HealthIt.gov for more about EHR. This time at https://www.healthit.gov/buzz-blog/electronic-health-and-medical-records/emr-vs-ehr-difference/:

“With fully functional EHRs, all members of the team have ready access to the latest information allowing for more coordinated, patient-centered care. With EHRs:

• The information gathered by the primary care provider tells the emergency department clinician about the patient’s life threatening allergy, so that care can be adjusted appropriately, even if the patient is unconscious.
• A patient can log on to his own record and see the trend of the lab results over the last year, which can help motivate him to take his medications and keep up with the lifestyle changes that have improved the numbers.
• The lab results run last week are already in the record to tell the specialist what she needs to know without running duplicate tests.
• The clinician’s notes from the patient’s hospital stay can help inform the discharge instructions and follow-up care and enable the patient to move from one care setting to another more smoothly.”

Did you notice the part about what a patient can do? With my patient portal, I can check my labs, ask questions, schedule an appointment, obtain information about medications, and spot trends in my labs. Lazy? Let’s make that even lazier. No more appointments for trivial questions, no more leaving phone messages, no more being on hold for too long. I find my care is quicker, more accessible to me, and – believe it or not – more easily understood since I am a visual, rather than an audial, person.

Kudos to American Association of Kidney Patients for postponing their National Patient Meeting in St. Petersburg from last weekend to this coming spring. The entire state of Florida was declared in a state of emergency by the governor due to the possible impact of Hurricane Irma. The very next day, AAKP acted to postpone placing the safety of its members over any monetary considerations. If I wasn’t proud to be a member before (and I was), I certainly am now.

Aha! That gives me five found days to separate The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1 and The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 each into two separate books with indexes. I never was happy with the formatting of those two. I plan to reward myself after this project. How, you ask. By writing a book of short stories. I surmise that will be out next year sometime. Meanwhile, there’s always Portal in Time, a time travel romance. Geesh! Sometimes I wonder at all my plans.

Until next week,
Keep living your life!

Damned If You Do and Damned If You Don’t.

It is absolutely amazing how many things can go wrong with the human body.  Some, such as cancer, are drastic while others, like a general feeling of being unwell or fatigue (sound familiar, Chronic Kidney Disease sufferers?), are not. For example, Bear has developed the Helicobacter pylori infection. This, according to MedlinePlus (part of the U.S. National Library of Medicine) at https://www.nlm.nih.gov/medlineplus/helicobacterpyloriinfections.html  is

H. Pylori a type of bacteria that causes infection in the stomach. It is found in about two-thirds of the world’s population. It may be spread by unclean food and water, but researchers aren’t sure. It causes Peptic ulcers and can also cause stomach cancer.”

That made me nervous.  I immediately (and unfairly) blamed the food we’d eaten during our almost recent cruise to the Caribbean – specifically, during our ports of call in Haiti and Jamaica – and debated phoning my brothers and sisters-in-law right away… oh, and getting myself checked. After all, it was either a simple blood or breath test. Our primary care doctor preferred the blood test.

That decision was sort of a mistake. Our usual – and very good – phlebotomist was out that day having taken a sleep test (Good for her!) in a faraway part of the valley the night before and couldn’t make it in, so a daily temp did the drawer. Oh! That was almost a week ago and I still have a three inch black and blue mark on the puncture site.  I want my regular phlebotomist.

I know, I know, get back on topic.  I didn’t make those calls because my test came back negative… so it wasn’t the food at the ports of call.  Well, then what caused Bear’s infection? WebMD at http://www.webmd.com/digestive-disorders/h-pylori-helicobacter-pylori tells us,

“Many people get H. pylori during childhood, but adults can get it, too. The germs live in the body for years before symptoms start, but most people who have it will never get ulcers.”

That made sense. As a child, Bear spent his summers on his grandfather’s farm and participated in whatever chores a child his age could perform. This is not to say the food or water on the farm were unclean, but

“…H. pylori bacteria may be passed from person to person through direct contact with saliva, vomit or fecal matter…. Or “Living with someone who has an H. pylori infection.”

Thank you for that information Mayo Clinic at http://www.mayoclinic.org/diseases-conditions/h-pylori/basics/risk-factors/con-20030903.

Considering the existence of this type of infection wasn’t discovered until 1982 and Bear was a child way before then, he may have contacted it in the manner described above.

Of course now you’re wondering what the heck we were going to do about it, no matter how my poor hubby developed it since it could have drasticantibiotics consequences if we didn’t. (Long sentence there.) MedicineNet.com at http://www.medicinenet.com/helicobacter_pylori/page8.htm explains:

H. pylori is difficult to eradicate from the stomach because it is capable of developing resistance to commonly used antibiotics. Therefore, two or more antibiotics usually are given together with a PPI and/or bismuth containing compounds to eradicate the bacterium. (Bismuth and PPIs have anti-H. pylori effects.)”

Is it effective? We don’t know yet, since Bear is in the middle of the regiment.  However, I’ve read that sometimes the infection can re-occur even if this treatment is successful and that the blood test is not a good choice to re-test after the medication has been finished. One step at a time, folks, one step at a time.

While I’m concerned about Bear, I also wanted to know how this might affect someone with Chronic Kidney Disease who developed it. It seems that it doesn’t until you reach End Stage Chronic Kidney Disease. Since I don’t know much about dialysis or any of the other end stage blood cleansing methods I can only give you information about the little I understood.

pepticOne is this conclusion from a PubMed.gov study at http://www.ncbi.nlm.nih.gov/pubmed/24907021.

“The H. pylori infection rate is lower in PUD patients with CKD and ESRD than in those without CKD.”

Ugh! Alphabet soup PUD is Peptic Ulcer Disease; CKD is Chronic Kidney Disease; and ESRD is End Stage Renal Disease.

But then I found a more negative study on Medscape at http://www.medscape.com/viewarticle/843877.

“This is currently the largest nation-based study in which the risk of ESRD in H. pylori-infected patients was examined. H. pylori infection was associated with a subsequent risk of ESRD. H. pylori-infected patients with concomitant chronic kidney disease (CKD) or cardiovascular disease (CVD) risk factors were at higher risk of ESRD than were those who had a single CKD or CVD risk factor.”

I also found it interesting that the stomach medication Omeprazole, which has just been linked to CKD, is prescribed along with antibiotics to treat H. Pylori. Now there’s a Catch 22. You can take it as prescribed for your infection, the medication may damage your kidneys, or you can not take it and have the infection damage your kidneys anyway.

Ouch!  Enough of this gloom and doom.  Tomorrow is my birthday and that means gifts for you.  I am giving away one copy of each of my kidney disease books: What Is It and How Did I Get It? Early Stage Chronic Kidney Disease; The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 1; and The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 2.IMG_1398

What is it

 

What do you have to do to receive your gift? Simply be one of the first three people to like my Facebook page: SlowItDownCKD and leave a comment about Chronic Kidney Disease. The first person to do so will receive a copy of What Is It and How Did I Get It? Early Stage Chronic Kidney Disease, the second will receive a copy of The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 1, and the third of the three will receive a copy of The Book of Blogs, Moderate Stage Chronic Kidney Disease, Part 2. Don’t forget to leave the comment. Enjoy my birthday, everyone.

Until next week,

Keep living your life!