Blog that I wrote for The Hope: WHAT BEING A KIDNEY ADVOCATE MEANS TO ME Written by Guest Blogger: James Myers https://kibowhope.com/what-being-a-kidney-advocate-means-to-me/

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WHAT BEING A KIDNEY ADVOCATE MEANS TO ME

The Hope

November 27, 2019

Written by Guest Blogger: James Myers

The information shared here is not necessarily the opinion or views of The Hope or It’s sponsor Kibow Biotech

I wanted to write today about my advocacy and what it means to me. I have been a very active kidney advocate for over 7 years now, and everyday I try to advocate for my fellow Kidney Patients. It has become my full-time preoccupation. I do not think of it as work. Work never made me this happy. This is life. This is what my life was supposed to be from the beginning; my joy, my passion, my complete being. Myself. This is what I am.

My Story

My name is James Myers. I live in Hammond, IN. I am an ESRD & PKD patient. I was lucky enough to have a transplant on April 27th, 2016. I write to you today to tell you my story, as well as, my experiences with polycystic kidney disease. At the age of 25, I went into the hospital with chest pain. From a simple x-ray, and was diagnosed with PKD.

At that time, I was an attorney, married with a home and a child. My father had died earlier that year from congestive heart failure, uremic poisoning, secondary to polycystic kidney disease.

I have lost 5 members of my family to PKD, including my Dad. Because of my family’s history, I was immediately referred to Dr. Hellman, a nephrologist at Indiana University Health. He immediately put me on high blood pressure medication and a renal diet. I faithfully followed up at the kidney clinic in Indianapolis every 6 months and took my medicine. I did the best I could do to stay on the kidney diet. There is no cure for PKD, and at that time there was very little they could do for me.

I tried to ignore my condition and carry on with my life, but in reality, the fact is that after I was diagnosed with kidney failure, all of my decisions were colored by my impending death, or so I thought. It was a factor in a failed marriage, a legal career being cut short, and two professorships at two different colleges lost. I loved being with the kids.

Every step that I took from the date of my diagnosis was for one reason and one reason only; to avoid dialysis. I was able to do that for over 30 years, but in 2012. I could not delay it any longer. I began passing out, at home, in my classroom, everywhere. Many times after passing out, I was fearful I would be unable to reach the phone and call for help. I lived alone, and this caused a great deal of anxiety. At the age of 58, on July 28th, I started what would be a 4 year stretch on lifealysis. My schedule was 3 days a week, 4 hours per session.

I was very, very angry when I first went on dialysis. After watching my Dad die, I felt this was the beginning of the end. I had dreaded this for a long time. My Dad passed after a short 5 yrs on dialysis, and I felt I was on the same life path as him. My days were numbered. I observed that many of my clinicmates came to the center by ambulance, were brought in on a gurney, walker or wheelchair. Many were diabetic on top of ESRD, and had suffered amputations.

One of my dearest friends, Maureen O’Brien, looked after me. Forced me to open my eyes. I was able to drive and walk around on my own power. I had a fairly clear mind. I was taking classes toward 2 MBAs and was teaching other MBA candidates law at the same time. Maureen had been dealing with kidney disease since the age of six. Every step along the way she had to argue and fight with healthcare officials. She had 3 transplants. She provided encouragement and a bright, vivid smile. She provided a light on my path.

My Advocacy Begins

I began to understand my role. I made a conscious choice. I wanted to help my fellow Kidney Patients. I wanted to use my loud voice to help others. I wanted to advocate for my clinicmates who could not advocate for themselves. I did not like the way the dialysis clinics, the government and the care staff pushed around or neglected my fellow Kidney Patients. The last straw for me was when the CMS began to push for the cutting of funds to dialysis patients and clinics. I looked around the room and I realized with my health and skill set, I was the only one who could help. It occurred to me that if i did not accept this responsibility, maybe no one else would.

I joined as many kidney organizations as I could, I applied to be an advocate for as many groups as I could. I became very, very active on social media. I wrote petitions, I blogged, I contacted newspapers, I spoke and visited with my Congressman and Senators. I spoke frequently. To this day, I do whatever I have to do to bring about change for my fellow Kidney Patients. My life has purpose now. I like to think that my Dad & Maureen would be proud of me.

My Dad was also an inspiration to me. He spent the last month of his life in St Margaret’s Hospital in Hammond, Indiana. My Dad was one of the first people in Northwest Indiana to try Peritoneal Dialysis. He had some success with it. About a week before he passed, his doctor asked him to speak to a new dialysis patient about doing PD at home. I just happened to be there at the time. We walked down a long hallway to get to the other man’s room. My Dad leaned on me heavily. When we got to the room, he asked me to get him a wheelchair so he could sit. They spoke for an hour. My Dad was not like me, I’m an extrovert. He was quiet, a listener, not a talker. He struggled through the conversation, frequently stopping and starting. But he got through it. He was determined. He ran his own business, two grocery stores in Cedar Lake, Indiana. Quiet determination and stick-to-it-ness were the reasons for his success. When he finished, I took him back to his room. I had to hang onto him all the way back, and nurses helped him back into bed. He slept the rest of that day. After he passed, the hospital published a newsletter with his story on the cover. There were pictures of him being active, working and talking to customers at his store. They promoted their PD services and the hospital. They made it appear that a PD patient never suffers a loss of his/her lifestyle if you use their services. They did not mention that my father had passed. At the time, I was angry, I felt they had used my father. I realize now, that my Dad allowed this. He wanted people to know, he wanted to help. My Dad set a very good example for me. He was a Kidney Advocate before there was a term for it.

I know that many of you are not used to me writing this way. I feel it is my responsibility to lift spirits, so I rarely talk about personal issues anymore. It is my hope to inspire others to likewise advocate for our fellow Kidney Patients.

The point of this Kidney Story is to raise hope and to thank all of you that advocate for Kidney Patients.

As an Advocate now, I write, I do petitions for legislation, I give talks, I travel, I give newspaper interviews, I go to conferences, I am very active on social media. I do everything that I can to raise awareness for kidney disease and to help my fellow Kidney Patients. I hope you will too. I hope to inspire others to take up the cause. It is a worthy pursuit. Won’t you join me? There is a Meme that I like. I want to share with you:

PKD affects approximately 600,000 Americans and 12.5 million people worldwide. It is one of the most inherited diseases on the planet. Polycystic Kidney Disease is more common than Cystic Fibrosis, Sickle Cell Anemia, Muscular Dystrophy, Hemophilia, Downs Syndrome, Hodgkins Disease combined. PKD is one of the four leading causes of Kidney Failure. It costs the federal government in excess of $2 Billion annually in Medicare and Medicaid costs for dialysis, transportation and related treatment. There is no cure. Please consider giving generously to the PKD Foundation.

Link to donate: https://pkdcure.org/donate/tribute/

2019 Advocate of the Year for the NKF
BOD and Ambassador for the AAKP
Ambassador for the Chronic Disease Coalition
Ambassador for the NKF of Indiana
Ambassador for the American Kidney Fund
Ambassador for the PKD Foundation
Ambassador for the DPC