Author Archives: kidneystories2013

About kidneystories2013

My name is Jim Myers. I have a page on FB I call Kidney Stories. I would like to post your story on my page. It's new, but I have close to 2000 friends on my regular page (James Myers). I would love to share your story. I just opened a new Twitter account (Kidney Stories) and my regular account I have close to 1000 followers. My belief is that the best way to help myself is to help others. I am on the transplant list at IU. Like you I need a kidney. I want to raise awareness. May I share your story? My page link here: https://www.facebook.com/KidneyStories?ref=hl

2017 in Review: NKF’s Advocacy Accomplishments

Advocacy in Action

By Troy Zimmerman, Vice President of Government Relations

2017 was a fantastic year for kidney patients as progress was made towards increasing awareness of chronic kidney disease (CKD) and introducing key legislative priorities.  The kidney patient community banded together to protect patients at the state and federal level.  Much of this success by National Kidney Foundation (NKF) was due to the work done by advocates like you, working on behalf of kidney patients.  Thank you for all your efforts.

Our accomplishments include the following:

  1. capitol building Capitol Hill

    On March 1st, 2017, the Living Donor Protection Act (H.R. 1270) was introduced to protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long-term care insurance to living donors, and from charging higher premiums.  It will also help to protect the jobs of living donors while they recover from organ donation. …

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Making Inroads in Congress

Advocacy in Action

By Dr. Michael Choi, MD and National Kidney Foundation President

Recently, I had the privilege to represent the National Kidney Foundation in 11 meetings in the U.S. House of Representatives, eight of which were with the Member of Congress and the other three with their health staff member.  The purpose was to build support for legislation (H.R. 3867) spearheaded by the National Kidney Foundation to improve the early detection and treatment of chronic kidney disease (CKD). The highlight of the day was a full one-hour discussion with Rep. Markwayne Mullin (R-OK), who introduced H.R. 3867 at NKF’s request, about the impact of CKD and the importance of early detection. My meetings also provided an opportunity to talk about the broad impact of various NKF programs.

capitol-building-at-district-of-columbia

Every Representative I met is a member of a House health committee and/or a physician.  It is encouraging to know so many Members of Congress…

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Early Detection and Treatment Saved My Life

Advocacy in Action

By Jim Myers, Transplant Recipient and Kidney Advocacy Committee advocate

My name is James Myers and I’m a polycystic kidney disease (PKD) patient.  PKD is an inherited form of chronic kidney disease where liquid filled cysts form on one’s kidneys.  Most often it leads to high blood pressure, abdominal pain, and then kidney failure.

Myers, Jim

I was diagnosed at the age of 25, almost 40 years ago.  PKD runs in my family.  I’ve lost five members of my family to PKD, including my Dad.  When he passed away in 1983, I was tested.  On a simple x-ray, they were able to detect the large cysts on both of my kidneys.  This came as a blow to me, then a young practicing attorney. I was referred to Indiana University Health in Indianapolis.  They put me on high blood pressure medication, on a renal diet, and took blood and urine from me…

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Betty vs Blood Trouble

The Adventures of Betty the Kidney

It’s has been a difficult few months transplant wise. Betty the kidney has been unhappy since the last hiccup with the gout drugs. She loved being on very few meds but as soon as they were started again my levels went nuts. I’ve been having blood tests almost weekly since November with a little break over Christmas. My urea levels were crazy and my creatinine jumped. My function dropped to 18% at its lowest. At 10% they start you on dialysis again.
Cue nightmares about dialysis needles and difficult days trying to drink as much fluid as possible. Constant nagging about drinking by my family, worrying about food I’m eating that may exacerbate the problem, worried my increased weight will be putting strain on Betty, stressing as I’ve been too exhausted to exercise. Ugh. I’ve been stressing myself out as well as those around me, giving myself headaches and generally…

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