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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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!

The Nos(e) Have It.

My father had a deviated septum.  My daughter has a deviated septum.  Why don’t I have a deviated septum?  Oh right, I’m the lucky one.  I only have Chronic Kidney Disease… not that the two are mutually exclusive… or that it’s lucky to have CKD.deviatedseptum

When it was my father’s turn, I was too young to know anything except that my dad was gone over night. I didn’t like that. Now I ask my daughter loads of questions. I don’t like that either.

So here I am very ahead of myself and not giving you a clue as to what a deviated septum is.  Septum comes from the Latin saeptum, which means “a fence, enclosure, partition.” (Thank you my old academia friend Etymology Online at http://www.etymologyonline.com/index.php?term=septum.) We still use that word for the dividing membrane in the nose.

Feel the rigid cartilage under the skin on the outside of your nose.  Inside are two chambers separated by the – what else? – septum.  Deviated means exactly what you think it does: turned aside.  Sometimes you can see the results of a deviated or turned aside septum by looking at a person’s nostrils.  If one is large and the other very small, it’s likely they have a deviated septum.nostrils

Sometimes people are born with them, but 80% of the time, they’re caused by accidents of one kind or another, or even growing older.  Sometimes people don’t even know they have a deviated septum.  Sometimes it doesn’t even matter.

sinusesBut when you start to experience frequent sinusitis and nosebleeds, it does start to matter. According to The Mayo Clinic at: http://www.mayoclinic.org/diseases-conditions/deviated- septum/basics/definition /con-20031537

“When a deviated septum is severe, it can block one side of your nose and reduce airflow, causing difficulty breathing. The additional exposure of a deviated septum to the drying effect of airflow through the nose may sometimes contribute to crusting or bleeding in certain individuals.”

Some of the symptoms are: preferring to sleep on one side since that allows the larger nostril to get the most air, noisy breathing, the above mentioned nosebleeds and frequent bouts of sinusitis.  Wait, sinusitis?  According to Canada.com at http://bodyandhealth.canada.com/channel_section_details.asp?text_id=5694&channel_id=1020&relation_id=70842

“The narrowed nasal passageway caused by a deviated septum can cause mucus to become blocked by preventing the drainage of mucus from a sinus into the nasal cavity. Excess mucus inside the sinuses presents an attractive environment for bacteria, leading to a sinus infection. This in turn causes inflammation of the sinuses (sinusitis), and because it can happen regularly, chronic sinusitis can occur.”

sinus infectionOh, my poor daughter! Frequent nosebleeds, chronic sinusitis, their accompanying post-nasal drip, and headaches.  Oh yes, headaches. As I understand it, fluid (can’t drain properly due to that deviated septum, remember?) builds up in the sinuses and exerts pressure.  Result: headache.

This sounds pretty bad, but there are ways of dealing with a deviated septum.Keep in mind that some people have a mildly deviated septum so they don’t do anything for it. Others are troubled by the deviated septum and use medications such as decongestants, nasal sprays, or antihistamines. But when the symptoms are affecting your life and health, surgery is usually suggested. The following is from MedicineNet at http://www.medicinenet.com/deviated_septum/page2.htm

“If a person has a deviated septum and it causes breathing problems or sleep apnea and snoring, surgery may be recommended to repair the septum. Surgery to fix a deviated septum is called a septoplasty, submucous resection of the septum, or septal reconstruction.”

Did you notice that this surgery is sometimes necessary so that the sleep apnea  – which may be caused by your deviated septum – can be cured?  That’s how it affects us as CKD patients. We already have enough problems without sleep apnea!  Diabetes, cardiovascular illness, mortality may all be connected to a deviated septum as we know from a recent blog that quoted EurekAlert at http://www.eurekalert.org/pub_releases/2014-04/elf-sal040214.php.septo

“Sleep apnoea has been linked with elevated blood sugar levels, suggesting people with the condition could be at an increased risk of cardiovascular illness and mortality.

The findings of a new study, published online today (3 April 2014) in the European Respiratory Journal, add to a growing body of evidence that suggests that sleep apnoea is linked with diabetes.”

sad faceYour medical condition is simply not as, well, simple as you think with CKD. Deviated septum may lead to sleep apnea, which may lead to diabetes, or any of the other outcomes listed above.

Okay, we’re ready to take a look at the surgery now. I found this at http://deviated-septum.net/deviated-septum-symptoms-diagnosis-and-treatment/ via a simple Yahoo search.

“Septoplasty is the surgical treatment which is preferred by doctors worldwide to correct a deviated septum. The surgery is done entirely through the nostrils, thus no external bruising occurs. During the surgery the portion of the septum which are [sic] extremely deviated will be re-adjusted or realigned or removed completely.”

Sometimes people do have a nose job (rhinoplasty) at the same time.  This completely changes the shape of the nose.  But let’s not judge here; maybe the adjustments made to the deviated septum would make the appearance of the finished product unacceptable to the patient.

I wish my daughter and everyone else who needs this procedure well.  She’s got a pretty nose.  I like the idea that she should be able to adequately breathe through it after her surgery… and may be cured of her headaches, sinusitis, nosebleeds, and sleep apnea.SlowItDown business card

News: the Medicare monthly magazine has profiled me for an upcoming issue.  I have no idea when it’ll be out, but I’ll tell you as soon as I know.

I’m wondering why, if my advocacy for Chronic Kidney Disease Awareness is so important that I’m being profiled by newspapers, interviewed on radio shows, and have so many readers for the blog, SlowItDown isn’t getting more calls to bring free ckd education by trained educators into the community.  Suggestions for speeding up SlowItDown (love that juxtaposition), anyone?Book Cover

Thank you all for keeping the book moving out of the stores and into your loved ones’ lives.  After reading about the deviated septum, I donated a copy to the pulmonologist I saw for my own sleep apnea today.

Until next week,

Keep living your life!