PKD Connection Blog

Advocacy, Voices of PKD

Voices of PKD: Jim Myers, kidney advocate

Jim Myers

My name is Jim Myers. I have been fighting PKD/kidney disease for nearly 40 years. I currently live in Hammond, Ind. My mother and father ran a couple of grocery stores in my hometown, Cedar Lake, Ind. My dad was afflicted with polycystic kidney disease. On his side of the family, four other people died from PKD. I’ve lost five members of my family to PKD.

I was diagnosed with PKD when I was 25 years old. I went into my local hospital with what I thought were chest pains. From a simple x-ray, my family doctor was able to diagnose that I had multiple, visible cysts on my kidneys. He immediately referred me to nephrologists at Indiana University in Indianapolis for care and treatment. Under the guidance of Dr. Hellman, I learned that PKD was hereditary and had no cure, but the growth of the cysts could be slowed and controlled by high blood pressure medication and a renal diet. As a practicing lawyer and later a college professor, this frightened me at the time, so I tried very hard to follow the protocol and make all my follow up visits. I was able to stay off dialysis until the age of 58. Then I was on dialysis for four years before receiving a transplant in 2016. I nicknamed my kidney Woody, after my dad. Woodrow is a family name, and it has been every Jim’s middle name since my grandfather and continues today through my son.

Jim on the day of his transplant, with his son Jim and daughter-in-law Monica

Like all PKD, patients, I have had my ups and downs. I had days where I passed kidney stones uncontrollably, I have had anemia, cysts burst and back pain so bad I could not move. Until 2018, I had been hospitalized at a minimum twice a year with PKD-related complications. I was no longer able to continue in my profession. I lost my marriage and my home. Initially, I was very angry, bordering on rage. I watched my father die, and I was certain that this was my fate.

While I was on dialysis, I noticed that although I drove myself to and from treatments, most of my other clinic mates came to the center by ambulance and were moved to their chairs by gurney, wheelchairs, walkers or canes. At almost the same time, Central Management Services for Medicare began to send out notices of cuts to funds for dialysis centers. Cuts could mean some devastating things for myself and my clinic friends: loss of nurses, technicians, social workers and a close place to dialyze. I thought someone should do something. These people were too sick to fight back. I was one of the healthier guys, and with my background as trial lawyer, I slowly came to the conclusion that at least in our clinic, it would have to be me. This is how my kidney advocacy began.

Jim speaking with Todd Young, U.S. Senator of Indiana, in Washington, D.C.

I started a petition on change.org. I became very active on social media. I wrote over 100 letters to the editor on the subject and I joined as many major local and national kidney advocacy groups as I could, including the PKD Foundation. I wrote articles and blogs. I contacted my local and national politicians. I spoke to any group that would have me. I worked with other organizations and people to learn how to fight against political challenges leveled against the kidney community, which I continue to do to this very day. I have been very fortunate to have won awards for my advocacy.

I continue to be very active on social media. I post kidney-related matters almost every day on Facebook, Twitter, Instagram and Tumblr. I reach approximately 100,000 people every month. I run 60 Kidney Pages and 50 Kidney Group pages, as well as nine electronic newspapers and 10+ blog sites. I have lectured on the subject of using social media to advocate for our fellow kidney patients to many large groups and kidney organizations.

Jim speaking at the 2018 AAKP Annual Convention in St. Petersburg about using Facebook to advocate for kidney disease

The advice that I would give to other PKD advocates is to play to your strengths. Use what you do best to raise awareness for PKD/kidney disease. If you speak well, write well, are musically inclined, research well, run a kidney related business well or any other talent you do well, that is your best avenue to produce great results for your advocacy. Use your gifts to help others. I’m a full time kidney advocate now. It is a decision that I do not regret. I highly recommend it. Questions? Don’t hesitate to contact me. My friends call me Uncle Jim.

How do you advocate? Share in the comments below and share your story on Voices of PKD!

Comments

  1. Maureen Gardner says:

    Wow-thanks for your amazing story!

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