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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Volunteering with the Department of Defense on Kidney Disease

Advocacy in Action

By Kent Bressler, RN,MA – Transplant recipient and Kidney Advocacy Committee advocate

In mid-2017, the National Kidney Foundation (NKF) nominated Erich Ditschman and myself to join the Congressionally Directed Medical Research Programs (CDMRP) Peer Reviewed Medical Research Program (PRMRP) panel organized by the Department of Defense (DOD) to review grant proposals.  As a kidney patient with FSGS, this gave me an amazing opportunity to represent kidney patients and help direct how grant funding is directed by the DOD for chronic kidney disease research.  I must tell you that I am profoundly grateful to have represented the National Kidney Foundation at this symposium.

Bressler , Kent Pic

On December 6th, I arrived in Reston, VA.  Once on site, I met six very talented and dedicated researchers who treated us with respect and dignity, not only during the panel meetings, but after the meetings.  They shared everything with us including the fact that they…

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