It Isn’t What I Thought It Would Be

I had my blog for today mentally written before I even sat down at the computer tonight.  I met with Dr. Jennifer Weil, of The Phoenix Epidemiology and Clinical Research Branch (PECRB) of the National Institutes of Health (NIH) Research Clinic on Saturday. Although a research nephrologist (specialist in the kidneys and high blood pressure), she is highly involved in the kind of Chronic Kidney Disease education and prevention I am interested in providing.  She’s so involved that she’s actually written material that had wonderfully apt analogies of her own devising. Those were what I had planned to write about today.    NIH

On Saturday, Dr. Weil gave me a DVD of her informational slide show and permission to use any or all of it for my own devices… or so we thought.  Once I sat down to write the blog and choose the slides I was going to use, I discovered she’d given me a DVD of another project: Looking Out for Our Health  – Slowing Down Kidney Disease, aimed at the Native American community with Native American patients telling their stories. Most of the people in the DVD were from the Salt River and the Gila River Indian Communities – the ones I’ve been trying to contact.

Originally, my Landmark Education Self Expression and Leadership project had been to bring CKD education and prevention classes to the local tribes. In my endeavor to do so, I learned from the Indian Health Services’ (IHS) Dr. Charles Rhodes, the Director of their Diabetes Prevention Program, that each tribe has been granted a percentage of  a $150,000 grant for diabetes education and prevention.  Because not all the tribes have decided to use the money for educational purposes (some use it for treatment), he is still helping me 601px-Indian_Health_Service_Logo.svglocate the tribes that may need SlowItDown’s free, sustainable program.

When I spoke with Dr. Andrew Narva, Director of The National Kidney Disease Education Program at the Division Of Kidney, Urologic, & Hematologic Diseases of at The National Institute of Diabetes and Digestive and Kidney Diseases which is part of the NIH and  U.S. Department of Health and Human Services  (This is the same man who asked me to call him Andy????), he explained that I may have missed the existence of many of the CKD education programs because they were under the auspices of the Diabetes Prevention and Education programs on the reservations.

Well, then, it looks like SlowItDown (the name of my Landmark project) would have to change its target communities.  Back to Dr. Weil and her slides.  She was very open to the idea of SlowItDown and began helping to pinpoint possible communities right away.  That’s when she showed me the slide show I thought I was going to write about tonight. But, of course, I can’t do that until I reach her.  The upside of that is we may have the topic for next week’s blog.

So now what?  I know, I’ll write about the Chronic Kidney Disease support groups I’ve found on Facebook.  First, I will warn you that certain groups and people (Not included in my list) are not real.  Well, I suppose they are real people but they are posing as other people in order to make themselves more acceptable to their perceived buyers so they can sell Chinese herbal medicine.sad face

There is quite a bit wrong with that.  I find the obvious deceit insulting.  Herbs themselves may be very effective, but as CKD patients we may need to take less of them since our kidneys cannot filter them out as well as non-CKD patients’ kidneys can.  In addition, what may be healthful for non-CKD patients is not necessarily healthful for CKD patients. Just ask your nutritionist about eating the traditional healthy diet.  So many of those foods are really hard on the kidneys. It’s the same principle here.

Now, the groups.  Please remember you may be happy with one group, but not another.  You have to find your own comfort level.  Also, some of the groups are closed and you need to seek permission to join.  Contact the administrators about that.  The best part of these groups is that they are all truly patients and usually run disclaimers or statements letting you know they are not doctors and you need to contact your nephrologist before you follow any of their advice.

Ready? Then keep in mind that these are in no particular order and all welcome CKD patients.

Kidney Health Liberated

Kidney Disease and Diet Ideas and Help 1

Show Your Scars Tour

Kidney Failure

Kidney Disease Is Not a Jokepeople talking

Chronic Kidney Disease “CKD” Awareness

The Transplant Community Outreach (I write ‘Kidney Matters’ for them at their request)

Renal  Patient Support Group

Transplant Friends

Chronic Kidney Disease

P2P (Peer To Peer)

But You Don’t Look Sick

TCO Women’s Health

Kidney Disease Shout Board

Support for Those Affected by Kidney Disease

What Is It And How Did I Get It? Early Stage Chronic Kidney Disease (like how I snuck that in at the end of the list?)

Some of these groups seem to be for other kinds of patients, but I’ve found each of them welcoming.  Some seem ‘dead,’ but pick up in a short time.   Others that are going strong as I write may not be around by the time you get around to reading the blog.  It’s just reassuring to know there are other CKD patients out there to share you angst, glories, numbers, and experiences with.  Try each group to find a few you like.

As far as the book, sales are steady both here and in Europe.  The funny thing is I’m surprised each time I get a check because I forgot that’s why I started this blog. While the book was the first step to sharing the information I have, this blog has become the primary sharing place.  Of course, if you’d like to buy some books to share with those that don’t have any information and no computer and B& are the places to go.  If you want the book signed, just contact me at:

We’re very late today because it’s my turn to be the caregiver in the family. It takes a lot of time, but not so much that I would completely miss blogging.

Until next week,The Table

Keep living your life!