I was 25 when I was diagnosed with Polycystic Kidney Disease (PKD). My Father had passed a few months before. PKD runs in my family. I've lost 5 members of my family to PKD, 2 Aunts, an Uncle, a cousin and my Dad. My PKD diagnosis came as a blow to me. I was practicing law in Indiana, Illinois and Michigan. I saw this as the beginning of the end. I began to see Nephrologists at Indianapolis University Health in Indianapolis. They put me on medications for high blood pressure, a renal diet, and tested me every six months. I was able to put off dialysis until I was 58. I was on dialysis for 4 years. I did in center dialysis. Initially I was angry. But as I watched people come in and out of the lab, I noticed they came in from ambulances in gurneys, on wheelchairs, in walkers, on crutches and shuffling with canes. At this same time the Centers for Medicare & Medicaid (CMS) was proposing to cut monies and services to dialysis labs and ultimately I began to realize that this would be like shooting fish in a barrel. My friends and dialysis clinic mates could not fight for themselves. That made me realize everything in my life had led me to this point. I joined the the work of the National Kidney Foundation (NKF). I spoke at kidney walks. I went to Washington DC. I became a kidney advocate. I made up petitions, wrote blogs, wrote letters to newspapers all over the country, appeared on television and radio. The CMS backed off. Cuts lessened and imposed over time. My friends were safe. Now I am a member of the Kidney Advocacy Committee and a Region Leader over 5 states. I have won several advocacy awards and am recognized as a social media advocate. In 2015, I won the American Association of Kidney Patients (AAKP) National Social Media Education Advocacy Award. The inaugural award. I am proud of the online work I do for my fellow kidney patients.
When it came to the point of me needing a kidney transplant, I spoke with my transplant doctor from Indiana University in the beginning of April 2016. He told me it would be a year or two more. Three weeks later on the 26th of April, I got the call! "Jim, we have a kidney for you." I was transplanted on the 27th of April. I named my kidney Woody. Woodrow is a family name. I do this to honor my Father. Woody and I will be together 11 months this day on March 27th, 2017.
My friends and my advocacy helped me get through the difficult times. And people like (Karaoke for Kidneys) that recognize the value and power of social media.
My whole life was designed to push me in this direction. I have embraced my responsibility as a kidney warrior. It has made my life complete. I spend my days advocating for others. It is a labor of love.
I will have kidney disease the rest of my life, but I still have my mind and I still have my voice. Therefore, it is my DUTY to advocate for those who cannot advocate for themselves.
My advice for those with kidney failure is never ever give up! There will always be better days ahead. Advocates like myself keep talking until they listen.
Throughout my journey and advocacy, I remain hopeful for the positive evolution of my fellow kidney patients!
A lot has been sacrificed due to my PKD and kidney failure. I lost family members and friends. Lost my profession. Lost my wife. Lost money and real estate, but I have gained so much more. I am a true kidney advocate for others. I am where I am meant to be.
My biggest fear living with kidney failure is death, but I fight everyday with others to overcome and enjoy life. I am still here and can do the things that are important to me.
I want more people to realize that kidney disease is not the end. You are not alone. You control your life, not your disease. You do the things that fulfill your existence. You are your own best advocate!
I maintain my positive attitude by helping others. By giving people a hand up when I can! I'm an advocate because I am able. I have accepted my responsibilities in this life. To advocate for my fellow kidney patients who cannot fight for themselves. I am a part of many advocacy groups, but primarily the Kidney Advocacy Committee with the National Kidney Foundation.
One more thing. I value the friendships I have made along the way. This includes my new friendship with Karaoke for Kidneys. Looking forward to sharing your adventures.
Follow James and his advocacy efforts on Facebook Kidney Advocates