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!

Clearing My Head

Today’s the day to bring up those isolated thoughts roaming through my mind.

But first: happy birthday to Lara, she of the bunnies {the one I introduced on this blog – Temperance – now has a buddy, Seely} and one of the five lovely daughters in this blended family.  It’s quite a coincidence how their ages step: each one is just about a year older (or younger, depending upon how you look at it) than the others.  May you have many more healthy, happy, fun birthdays Lara.

Questions have been raised about pertussis (whooping cough) which I hope to have answered for you a.s.a.p.  Parts of Texas and Seattle, Wa., already have epidemics so I’m in contact with the CDC experts awaiting an explanation as to why CKDers need to be extra careful about this disease – if, indeed, we do. Thank you to Laura for bringing up the question.

Some of you have been asking for a way to check on the interactions of any medications you may be taking. After a bit of researching, I’ve found just such a function at: http://healthtools.aarp.org/health-encyclopedia?cmp=NLC-HealthEng-CTRL-82510-LONG-ENCYC.  Look on the upper right side of the page.  I don’t think this one is terribly medical in its explanation since it is AARP (American Association  of Retired People) rather than a physician’s site.  Let me know how you like it if you decide to give it a shot.

I pulled up this article from last Halloween (hmmm, is the date relevant?) as an example of why I have so many doubts about drugs, drug companies and just what each drug can do despite the fact that we sometimes need the drug.

Controversial Cholesterol Pill Vytorin Shows Promise For Kidney Patients

 by

 October 31, 2011
 
[This is me: the first part of the article refers to a television advertisement demonstrating that your high cholesterol may be caused by genetics, bad habits or a combination of both.]

Remember Grandpa Frank?

Way back in 2008, the ad above ran in heavy rotation on TV during the heyday of Vytorin, a cholesterol-lowering pill that claimed to fight both genetics and bad habits.

Soon after the ad had appeared, oh, say thousands of times across the country, the Food and Drug Administration asked the company to revise the ads with Grandpa Frank and other relatives because the ads didn’t reveal a study showing Vytorin wasn’t any more effective than simvastatin, a generic cholesterol medicine that is one of Vytorin’s components.

Later that year there was more bad news for Vytorin — and fear among patients — when a study suggested Vytorin raises the risk of cancer slightly. Sales fell from a peak of $5 billion a year to $2 billion last year.

None of this caused the FDA to change its view of the safety of Vytorin. The agency even issued a statement in 2009 essentially exonerating Vytorin of the cancer risk.

Now, Merck, the maker of Vytorin, is looking to regain some of the lost sales of the drug by touting its use in people with chronic kidney disease.

A new FDA analysis shows Vytorin lowered the relative risk of heart attacks and strokes by 22 percent among CKD patients in the relatively early stages of disease — before they need dialysis. For those with more severe, later-stage disease, the drop was 6 percent.

The FDA analysis also failed to find any increase in cancer or cancer deaths in the 20,000-plus patient study.

Merck is seeking FDA approval for use of Vytorin in CKD patients of which there are 26 million in the U.S. alone, according to the National Kidney Foundation.

A committee of independent advisers to the FDA will go over the data for and against Vytorin at a meeting Wednesday.

You can read the article at: http://www.npr.org/blogs/health/2011/10/31/141880804/controversial-cholesterol-pill-vytorin-shows-promise-for-kidney-patients?ft=1&f=1027

I’ve got questions:

1. Why is Vytorin, rather than its generic form –  simvastatin – being touted?  Didn’t the article state that this component of Vytorin was just as effective?

2. What happened to the study suggesting that Vytorin raises the risk of cancer slightly?

3. Since I found this on the official FDA site for Vytorin at Drugs.com, why isn’t it mentioned in the article? (http://www.drugs.com/pro/vytorin.html) ” In patients with chronic kidney disease and estimated glomerular filtration rate <60 mL/min/1.73 m2, the dose of Vytorin is 10/20 mg/day in the evening. In such patients, higher doses should be used with caution and close monitoring.”
 
4. Where is there mention of further studies discussed in the FDA’s report: “With all the controversy surrounding ezetimibe in the past 18 months, the cardiology community anticipates the results of IMPROVE-IT, the large clinical-outcomes study chaired by Dr. Eugene Braunwald of the TIMI Study Group and cochaired by Dr. Robert Califf  (Duke Clinical Research Institute, Durham, NC). The study will compare simvastatin 40 mg plus ezetimibe 10 mg with simvastatin 40 mg alone in 18 000 patients with a recent acute coronary syndrome. Those results will be available in 2012.
 
I do not mean to attack this particular drug from this particular company, but am using this article as an example of just how unsure I am about what we are being told about the drugs we use and how contradictory the information about these drugs can be.
 
On a happier note, did I tell you that I decided to go to my graduation?  I have earned a high school diploma, Bachelor of Arts, and Masters degree – not to mention the numerous certificate programs I’ve completed – (okay, okay, I know I could be  the poster child for life long learning).  This time, it was an Academic Certificate in Creative Writing from Rio Salado Community College and I realized this might be my last opportunity to attend one of my own graduations, as opposed to being part of or attending others’ graduations. I must say this was such an exhilarating, inspiring experience!  I urge you not to ignore your own milestones.  Take every chance you can get to celebrate yourself. This is my younger daughter, Abby, and me right after the ceremony.   
 
Until next week,
Keep living your life!