Be Inspired

Wow!  Both Mother’s Day and Mother’s Day have slipped by.  I hope all of you had a wonderful time with your mother, father, chosen mother, chosen father, surrogate mother, surrogate father and/or whoever fills the role for you. I hope you had laughter, tears, hugs and kisses – or, at least, a really firm handshake for those who are not demonstrative.

Please be aware that if one of your biological parents has CKD, you are at higher risk for the disease. AND if you are the biological parent, so are your children.

That made me so angry when it was explained to me. Of course, I had no clue why I was angry – but it is said that anger is the flip side of sadness. I have children.

Hmmm, have you considered giving a copy of What Is It And How Did I Get It? Early Stage Chronic Kidney Disease to either your parent or your child as a late Mother’s or Father’s Day gift?  What about as a graduation gift to the aspiring medical student? Now that’s inspiration.

Wait!  I have to repeat this: Dr. Jamal Atalla is such a gentleman that he said nothing when I misspelled his name in last week’s blog.  My apologies and thank you for your kindness in not mentioning it, Jamal. I was actually meeting with Tamara Jensen from AKDHC when I realized I’d misspelled his name and stopped mid-sentence to make a mental note to mention this in the blog.

Many people choose to share a meal out to celebrate holidays.  Bear’s daughters, Lara and Kelly, and Kellly’s significant other – Sean – took us to Cracker Barrel for breakfast to celebrate.  [I noticed the bracelet part of medical alert bracelets being sold as interchangeable watch bands  at the cashier’s counter. Apparently, they are the same things.  A little too fancy for my taste, but worth checking out.] My daughters, Nima and Abby, were in New York having lunch out  with their father.

And, yes, I was able to find something on the menu that fit the renal diet I follow.  Naturally, I did get those “Are you sure?” questions from the friendly waiter when I asked there be no butter, syrup, sweetened fruit, or powdered sugar on top of my made-from-scratch French toast and just black coffee and water with lemon but no ice.  I’m used to my diet now and thoroughly enjoyed it as much as the others enjoyed their bacon, sausage, and whatever else they had. Have I inspired you to eat out safely for your CKD?

Some readers were surprised to discover that I’d seen my nutritionist not once, but twice. My nephrology center, AKDHC, includes a yearly consultation with a nutritionist.  Now that I’m older and on Medicare, I decided to see what they cover.  Surprise!  Three visits, the first year and two every year thereafter.  This is from their website. 

 

Medical Nutrition Therapy

How often is it covered?

Medicare covers medical nutrition therapy services prescribed by a doctor for people with diabetes or kidney disease. This benefit includes:

  • An initial assessment of nutrition and lifestyle assessment
  • Nutrition counseling
  • Information regarding managing lifestyle factors that affect diet
  • Follow-up visits to monitor progress managing diet

Medicare covers 3 hours of one-on-one counseling services the first year, and 2 hours each year after that. If your condition, treatment, or diagnosis changes, you may be able to get more hours of treatment with a doctor’s referral. A doctor must prescribe these services and renew their referral yearly if you need treatment into another calendar year. These services can be given by a registered dietitian or Medicare-approved nutrition professional.

This is the address at which you can find the rest of this article and others that may be of interest to you.  http://www.medicare.gov/navigation/manage-your-health/preventive-services/medical-nutrition-therapy.aspx?AspxAutoDetectCookieSupport=1  Hopefully, this has inspired you to call your nephrologist for a visit with the practice’s nutritionist.

Let’s move from using renal nutrition therapy to stave off End Stage Renal Disease to alternatives should you reach stage 5.  What if you’re among the 20% of CKDers who aren’t able to stabilize at stage 3 and need to go on to dialysis?

This article from the University of Washington caught my eye a couple of months ago. Frankly, I had trouble believing this was even possible. It just sounded too much like science fiction. After pondering and pondering, I’m now convinced it is more science than fiction. I’d be interested to hear your opinion.

Wearable artificial kidney to be tested for safety and effectiveness in collaboration with FDA

By Leila Gray and Linda Sellers

UW Health Sciences/UW Medicine and Northwest Kidney Centers

A wearable artificial kidney, designed as a new treatment for kidney failure, will be tested in Seattle. The trial will be done in collaboration with the Food and Drug Administration under a new Innovations Pathway announced Monday.

The battery-powered wearable artificial kidney in its current form weighs about 10 pounds and is worn in a belt around the waist. Dr. Victor Gura, an associate clinical professor at the David Geffen School of Medicine, University of California, Los Angeles, invented the device. His goal is to free end-stage kidney disease patients from being tethered for several hours for three or more days a week to a dialysis machine. The hope is to improve the quality of life of these patients.

Researchers will be testing a wearable device that takes over the blood-cleaning functions of the kidneys…. The Wearable Artificial Kidney is being developed by Blood Purification Technologies Inc. based in Beverly Hills, Calif..

“Quality of life issues will likely be embedded in the trial design,” Himmelfarb said. “We’ll probably be asking patients, ‘Can you move with ease? How do you feel? How does the device or the treatment affect your daily life? Can you go to work with it on or go out with your family and friends?’ We will be looking at key health outcomes as well as health economics.”

“At present, if you want to attend your cousin’s wedding in New York City, you need to check to be sure time slots are available at a center for you to get your dialysis done. You can’t just walk in,” he said. “If you live in a rural area, you probably drive a long distance every week for your dialysis sessions. A safe, effective, wearable artificial kidney would give end-stage kidney disease patients much more freedom in their lives.”

You can find the entire article at: http://www.washington.edu/news/articles/wearable-artificial-kidney-to-be-tested-for-safety-and-effectiveness-in-collaboration-with-fda

So we’ve gone from renal nutritional therapy to external artificial kidneys in just one blog.  I am so inspired to realize just how much is available to us.

Nathaniel Smalley, former East Coast Swing venue owner and now professional photographer, has initiated a Facebook page for nature and wildlife photography (https://www.facebook.com/#!/groups/NaturePhotographyWildlifePhotography/permalink/321242084623998/?notif_t=like). The professionals there (I’m one of the non-professionals) called this photograph inspiring, so look at it and realize Chronic Kidney Disease is not necessarily a death sentence. 

Until next week,

Keep living your life!

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