“Be an advocate for the people and causes important to you, using the most powerful tool only you have—your personal stories.”
― John Capecci and Timothy Cage
38 years on Lithium ruined my kidneys. I’m listed on Johns Hopkins transplant list (5 years now). I need Blood type A or O for a preemptive transplant. My hubby can’t cook and our dogs need me around longer. For more info text 717-507-0969. My insurance pays for all testing. Please be an angel and consider donating your spare. #MoreThanKidneys
I began my journey with kidney disease at a young age and quickly progressed to needing dialysis shortly after I graduated high school, and that began a life of loneliness and despair. I lost my self in the face of my illness and I wanted everything to end and was working to make that happen. It wasn’t until I met someone who gave me a chance despite my struggle and enabled me to see that what I had been through and continue to endure makes me more…not less. This began a new journey in my life in which I try to give back to the kidney community I had always been a part of. Once I believed in my ability despite being on dialysis, I started making videos to help inspire others, and that lead to creating a business making comfortable, accessible clothing for chronic illness warriors designed to accommodate a range of medical treatments and procedures. I believe our experiences give us the strength, wisdom, and patience to be the change the world has been waiting for. #MoreThanKidneys
Take a look at Dax’s clothing line: IVYE Wear
Watch his videos
James Myers (Uncle Jim)
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.
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 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.
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 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.
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 they 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.
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.
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 donating to the PKD Foundation.
James Fabin (DadviceTV)
From that moment on, I did everything I could to learn about Chronic Kidney Disease, global treatment strategies, and the importance of eating the right diet. I was determined to avoid going on dialysis, and I summoned the Super Nerd inside of me to science the heck out of fighting kidney disease.
Dawn Edwards (New York State CKD Champions)
I was diagnosed with kidney disease at the age of 23, and have experienced first-hand every renal replacement modality, including a kidney transplant and rejection. As a result, I have a wealth of insight into the needs of people with Chronic Kidney Disease and shares enjoy sharing my insight with fellow patients and the professionals who take care of them. I am dedicated to improving the quality of life of people with Chronic Kidney Disease with Education, Encouragement, and Empowerment. I am a communicator, mentor, and educator with over 20 years of experience in advocacy and patient/provider education. I serve on many boards and committees locally and nationally and is the CEO of my own patient-run organization, the New York State CKD Champions.
I belive I am more than Kidneys because I believes that life is a precious gift and I am determined to do as much as I can to touch as many lives as possible. I have one daughter, who remarkably works in dialysis. I enjoy shopping, attending concerts, being active in my church and traveling with my home hemodialysis machine in tow.
Cyrelle “Cy Speaks” George
In 2017 the entire scope of Cyrelle’s life shifted when she was diagnosed with End Stage Renal Disease. Not one to back down from a challenge nor buckle under pressure, Cyrelle took that diagnosis and became an advocate bringing awareness about kidney disease. Cyrelle wrote her first book, “A Warrior’s Heart: A Devotional For Those Battling A Chronic Illness,” to remind every kidney warrior that CKD is not the end of their story but a new beginning.
It is her work as a kidney patient advocate that Cyrelle says has been the second most rewarding position, the first being a mother to her son, Bryce. Partnering with various kidney awareness organizations has allowed Cyrelle the opportunity to be a voice in the community and for those who are battling this disease on a daily basis.
It is my sincerest prayer that fellow warriors would be encouraged and empowered by the way I’m living this journey out loud to keep living and thriving. #MoreThanKidneys