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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They’re Not Twins

Kidney ArizonaMarch is National Kidney Month here in the United States.  That makes it an even better time to have yourself screened for Chronic Kidney Disease. 28 million people have it and quite a few of them don’t know it.  Don’t be one of them.  All it takes is a simple blood test and a simple urine test.

Talking about blood and urine tests, I mentioned in passing on one or two of my blogs that your values and the reference range values on your lab tests may differ according to the lab you use, and loads of physical factors such as: being adequately hydrated, having voided your bladder, having gotten enough sleep, even how the specimens were handled.

I was in the unique position of taking these two tests once and then again two weeks later. Had the due date of the tests for each doctor been closer, I might have combined them and had the results of the one set of tests sent to each doctor. But my nephrologist needed his tests two weeks before my appointment, and my primary care physician {pcp} needed hers no less and no more than every three months since she was monitoring my bmpliver for the effect of a medication.

She was checking primarily for my cholesterol levels {which are better than ever and finally all within range, thank you very much!} and included the other tests because she is one thorough doctor. He, my nephrologist, was much more concerned with my kidney function.

The reference range values from the two different labs I used were not twins. For example, Sonora Quest, the lab my nephrologist uses, has the acceptable range for creatinine as 0.60 – 1.40.  But my pcp uses LabCorp. which states that it is 0.57 – 1.00 mg/dL. If you look to the right, you’ll see an older test result using mg/dL.

I wasn’t really sure what mg/dL meant, so I looked it up. According to the Free Dictionary at http://acronyms.thefreedictionary.com/mg%2fdL, this means

Milligrams per Deciliter

That was my reaction, too, so I used the same dictionary for both words used in the definition.  Milligrams means

A unit of mass equal to one thousandth (10-3) of a gram

while deciliter means

100 cubic centimeters

We are talking small here!Book Cover

The results for this test were a little different, too.  On February 10th, it was 1.11, which was not out of range for Sonora Quest.  But two weeks later, it was 1.1 – ever so slightly lower – which was out of range for LabCorp. This is a bit confusing.

Let’s go back to What Is It and How Did I Get It? Early Stage Chronic Kidney Disease to see if we can shed some light on this. On page 21 {Use the word search if you’re using the digital version of the book.}, I wrote

A higher creatinine result could mean the kidneys were not adequately filtering this element from the blood.

By the way,

Creatinine is a chemical waste product that’s produced by your muscle metabolism and to a smaller extent by eating meat.

Thank you to The Mayo Clinic at http://www.mayoclinic.org/tests-procedures/creatinine/basics/definition/prc-20014534 for this clarification.

All I can say is that seemed like earth shattering information when I was first diagnosed with CKD.  Now that it’s seven years late, it just means I have CKD.  It’s sort of like reiterating I have this slow decline in the deterioration of my kidney function no matter which acceptable range we use.

Another difference in value ranges was BUN.  This is your urea nitrogen. Medline Plus at blood drawhttp://www.nlm.nih.gov/medlineplus/ency/article/003474.htm explains

BUN stands for blood urea nitrogen. Urea nitrogen is what forms when protein breaks down.

This could be a ‘Who cares?’  statement except that the BUN is used to measure your kidney health. Sonora Quest’s acceptable range is 8-25 mg/dL, while my LabCorp’s is 8-27. At the first lab, my value was 22 and at the other, two weeks later, it was 17. Both were in range, but let’s say – just for argument’s sake – my value had been 26.  Would that mean I was out of range?  It would at one lab, but not the other.  I think I just answered my own question as to why I need to have my doctor interpret my lab results even though I can read them myself.

Well, what makes these levels go up or down? Thank you WebMD for this simple to understand answer.

If your kidneys are not able to remove urea from the blood normally, your BUN level rises. Heart failure, dehydration, or a diet high in protein can also make your BUN level higher. Liver disease or damage can lower your BUN level. A low BUN level can occur normally in the second or third trimester of pregnancy.

Aha!  We know that as CKD patients we are restricted to five ounces of protein a day. Why combine an inability to “remove urea from the blood normally” with an overabundance of protein?

Hopefully, some of the questions you didn’t even know you had were answered today.

Part 2I’m sorry if you missed out on your free copy of The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 1  by being the third buyer during the last part of February. While I’ve used up my freebies for that book, I’m now working on a free day for The Book of Blogs: Moderate Stage Chronic Kidney Disease, Part 2 on World Kidney Day, March 12.  Keep watching for more news about this as Amazon and I keep working on it.

Again, if you’d like to join us for the Kidney Walk on April 19 at Chase Stadium in Phoenix, why not go to the Walk’s website at http://kidneywalk.kintera.org/faf/home/default.asp?ievent=1125145 and join our team, Team SlowItDown. We’ll be looking forward to seeing you there.

Until next week,

Keep living your life!

Guilty Pleasures

I read this phrase somewhere and that’s what today blog is: my guilty pleasure.  It’s my pleasure because my mission is to keep informing about Chronic Kidney Disease and it’s my guilt because I indulge myself in using my own life experiences to ease into this information.

downloadI did promise to write about our wedding reception today.  The first thing that comes to mind is music, lots of it.  Abby Wegerski, Nima Rosensfit (my biological daughters) and Michelle Davis (Cheryl’s daughter and my daughters’ cousin) – all professional singers at one time or another – regaled us with “Going To The Chapel of Love.”  My Arizona buddy, Karla Lodge (another professional singer) blew us away with her own solo.

I don’t know how it happened, but I sang “Hava Nagila,” in a full, clear voice.  That’s odd because I gave up singing since I could no longer stay on key and my voice had become thin and reedy.  It certainly wasn’t that way at our wedding.

One of our guests was Robert Arthur who I met when he was a student in one of the writing classes I taught at Phoenix College almost a decade ago.  We played his original album during the reception when no one was singing.GmM8B2ylPUP0lIuKR9OqrzOqFEOtJtRaf2Rpt6ncsBk

People who didn’t know each other started to interact and I loved it.  At one point, I noticed our best man – Michael Payne – in a tuxedo having a discussion with an unshaven young man wearing worn jeans and an ill-fitting shirt.  The dichotomy tickled me.

Karla, my Staten Island buddy Janet Le, and Michelle, who I still think of as my niece (despite no blood relationship) handled all the kitchen duties so I could just “be the bride.”  Michael made a beautiful toast. So much happened, but it reminds me of child birth; I don’t remember very much of it!download (1)

So let’s get to the heart of today’s blog: pregnancy when you have Chronic Kidney Disease (like the way I slid into that?).  According to the physicians’ journal BMJ,

“Pregnant women with chronic renal [kidney] disease adapt poorly to a gestational [pregnancy] increase in renal blood flow. This may accelerate their decline in renal function and lead to a poor pregnancy outcome.”

That blatantly gives you the bad news first, but it’s not the end of any thought of pregnancy with CKD. You can read the fairly technical, yet highly informative article at: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2213870

The following is a 1980 view of pregnancy’s effect on kidney disease.  Keep that date in mind since it is 33 years ago:

  • Increase in proteinuria [protein in the urine]
  • risk of preeclampsia [hypertension (a sharp rise in blood pressure), albuminuria (leakage of large amounts of the protein albumin into the urine) and edema (swelling) of the hands, feet, and face]
  • worsening of anemia [low red blood cell level]
  • lessening of renal function.

While I’ve paraphrased, it’s clear pregnancy with ckd was frowned upon all those years ago.  The study I found the information in can be located at this address: http://webdoc.nyumc.org/nyumc/files/med_nephrology/attachments/Pregnancy%20and%20CKD.pdf

Okay, lots of definition in the above outdated article.  Let’s see what thoughts about the subject are fairly current.

Pregnancy and Chronic Kidney Disease: A Challenge in All CKD Stages. That’s the title of an article I found at: http://cjasn.asnjournals.org/content/5/5/844.full.  The word ‘challenge’ caught my eye, so I did my best to understand the article which summarized information garnered between 2000 and 2009 about the subject.  According to the article, more cases of CKD were discovered during pregnancy than had been expected.  Of course, I immediately wondered if this were a new way of diagnosing CKD.  Of course, I knew I could not be tested this way.  Of course, you know I’m kidding.

baby-shots-5“Chronic kidney disease complicates an increasing number of pregnancies, and at least 4% of childbearing-aged women are afflicted by this condition. Although diabetic nephropathy [kidney disease from long term diabetes] is the most common type of chronic kidney disease found in pregnant women, a variety of other primary and systemic kidney diseases also commonly occur. In the setting of mild maternal primary chronic kidney disease (serum creatinine <1.3 mg/dL) without poorly controlled hypertension, most pregnancies result in live births and maternal kidney function is unaffected. In cases of more moderate and severe maternal primary chronic kidney disease, the incidence of fetal prematurity, low birth weight, and death increase substantially, and the risk of accelerated irreversible decline in maternal kidney function, proteinuria, and hypertensive complications rise dramatically. In addition to kidney function, maternal hypertension and proteinuria portend negative outcomes and are important factors to consider when risk stratifying for fetal and maternal complications. In the setting of diabetic nephropathy and lupus nephropathy [kidney inflammation caused by lupus], other systemic disease features such as disease activity, the presence of antiphospholipid antibodies [antibodies that might be in your blood and might increase the incidence of blood clotting and pregnancy termination], and glycemic control [eating low carbohydrate foods to help manage diabetes] play important roles in determining pregnancy outcomes. Concomitant with advances in obstetrical management and kidney disease treatments, it appears that the historically dismal maternal and fetal outcomes have greatly improved.”

The above is taken from Chronic Kidney Disease and Pregnancy: Maternal and Fetal Outcomes by Michael J. Fischer at: http://www.sciencedirect.com/science/article/pii/S1548559507000055, which is dated April 2007.  I included the entire paragraph since it makes so clear that pregnancy outcomes “have greatly improved.” And that was six years ago! By the way, I added the definitions in brackets.

I seem to be having trouble finding anything more recent, so I’ll summarize what I have found:

  1. Speak with your nephrologist about a high risk team before you become pregnant, if possible.
  2. Pregnancy in early stages of CKD has better outcomes.
  3. CKD may be discovered during pregnancy.
  4. Pregnancy is not an impossibility if you have CKD.kidneys5
  5. Treatment in pregnancy in CKD is continually improving.
  6. The risks are caused by increased renal blood flow along with other factors.

Considering my age, I’ll take my mother’s advice: “Better you than me.”  Don’t let CKD cause you to miss out on one of the wonders of life, but don’t be foolish.  Take care of that baby you intend to bring into the world by taking care of its mother.  Reminder:  giving birth to a baby is not the only way to become a mother.

Until next week,

Keep living your life!