WE NEED A NEW MEDICARE POLICY ON IMMUNOSUPPRESSANT MEDICATIONS FOR KIDNEY PATIENTS
WE NEED A NEW MEDICARE POLICY ON IMMUNOSUPPRESSANT MEDICATIONS FOR KIDNEY PATIENTS
Q&A with CDC Ambassador James Myers
Nearly 40 years ago James Myers was diagnosed with polycystic kidney disease (PKD), which is an inherited form of kidney disease. Because Myers was tested early, he was able to postpone dialysis for 23 years and received a kidney transplant only four years after that.
An Indiana native and attorney, Myers has spent his life engaging in advocacy work on behalf of kidney patients and others living with chronic diseases. Read more about Myers’ passion for advocacy in our interview.
Q: Why did you first become involved in advocacy work?
A: I was in my first year of dialysis in 2012 when the Centers for Medicare and Medicaid Services had threatened to cut services to dialysis centers. This meant that we could lose support staff, nurses, dialysis techs, social workers and dieticians. The people I took dialysis with were very ill, often coming to the center by ambulance, on a gurney or crutches, in walkers and wheelchairs. For all practical purposes they were helpless.
I was an old trial lawyer, a plaintiff’s lawyer, and I did not look over injured people – I helped them. At that moment, I decided I was the only one in that room that could really help them and I accepted my responsibility. I put a petition up on Change.org, l wrote to newspapers, I did interviews, I wrote articles, I joined many kidney organizations and I became active on social media. I learned that I am a kidney advocate and I love fighting for others when they can’t.
Q: When did you first begin experiencing chronic disease symptoms and how did you feel after receiving your initial diagnosis?
A: I’ve lost five members of my family to PKD, including my father. I began experiencing issues after he passed in 1983. I was diagnosed at the age of 25 by a simple X-ray, and at the time, I was a practicing attorney with a wife and a child. Because of my experience with my dad, this news came as a horrible blow to me. My dad died after having battled congestive heart failure, uremic poisoning and dementia, which were all secondary to PKD. I felt that I would die soon.
Q: What inspires you?
A: I’m inspired by my fellow advocates, who lift my spirits every single day. I’m inspired by my fellow kidney patients who fight and never give up. Joy comes to me every time someone receives a transplant. My friends on social media inspire me with their continued efforts to raise awareness. The organizations and their members that I belong to bring me renewed vigor and positive reinforcement. I am learning so much from my fellow advocates within the Chronic Disease Coalition – their perseverance is an inspiration to me.
Q: What is one piece of advice you would offer to others who are battling a chronic disease?
A: Never ever give up, and advocate for others. Next to raising my son, this is the most fulfilling and meaningful thing I’ve ever done. If you are able, help your fellow patients. I live by this motto I have seen on a Facebook meme: “I’m a Kidney Patient the rest of my life, but I still have brain and I still have my voice. Therefore, it is my DUTY to advocate for those who cannot advocate for themselves the rest of my life.”
Q: What is the importance of support groups, both in-person and online? How can newly diagnosed patients find a support group near them?
A: It is very, very important! When I was first diagnosed, I felt very alone, and I think other people feel that way as well. The support groups made me recognize that there were others like me who had battled the disease longer. This gave me hope and others as well. Additionally, support groups can teach you how to more effectively manage your disease and what you can do to make life better. If you need advice or a resource for information, members in support groups can help.
Finding them is easy – Google it, check on social media or ask an experienced friend for help. You will be surprised just how many people and sources can help and how many groups are available to you by simply making a phone call or pushing a button. Groups like this may be in your neighborhood, or as close as your smartphone.
MORE THAN A CONQUEROR LEGACY
A BOOK BY BILL HAHN
REVIEWED BY JAMES
Available at Amazon.com: https://www.amazon.com/dp/1546992391
I recently had the great pleasure of reading a book by my good friend and colleague, Bill Hahn. Spiritual, emotional, personal, revealing, this is a good read, even if you are not interested in kidney/organ donation. This book is about one man’s journey from life-altering loss, to near death, to rebirth and making the journey a blessing to others. In his Forward to the book, Congressman Posey’s message says it best: Despite all odds that Hahn encounters, Bill is a tireless advocate for organ donation, and just from his tone, you realize that the Surfpro is a guy that get things done; a bottom line overachiever.
Bill takes great care in telling us his story. This book with its spiritual confessions, videos, poem and even music tells the story in detailed, heartfelt honesty and precision. This is a story about a professional surfer, fit, healthy, competitive, who suffers from kidney failure and subsequent loss. Bill’s pro surfing career was cut short by diabetes. He has been a diabetes warrior for the last 26 years.
During that time period, Bill that he has overcome much in his journey; total blindness, comas, seizures, heart attacks and cancer.
It is in the Christian way that he responds to the drastic changes in his life that makes this book special. Imagine one day your ripping up waves in Florida, and 26 years later you’re in the hospital getting a fistula installed and placed on dialysis due to diabetes followed quickly by End Stage Renal Disease.
Time passes, once, twice he is called for a new kidney, only to be turned away. But the third time, Bill gets THE CALL!
In Bill’s own words,
“My first CALL I said NO. The reality that some had passed hit me as I needed both a kidney and pancreas transplant. By the second CALL I realized God has a plan for each of us so I said YES but the organs had been compromised and my gift of life was put on hold. Call number three was the miracale. GODS PLAN.”
His New Year’s Miracle came at the age of 52, and he became a Kidney/Pancreas Warrior, advocating in God’s name and his donors name. He is reborn, transplanted, given back to us. 9 years and counting, Bill has been given new life. He calls this his New Year’s Eve Miracle, a gift from God. Prayers answered, Bill has become a world class Kidney/Organ Donation Advocate. He has done much to honor his New Gift of Life, Including:
• The Annual Footprints in the Sand Kidney Walk for the National Kidney Foundation of Florida;
• The Starfish Donor Mom Tribute Dinner;
• Helping Dialysis Patients Understand They are not Alone;
• Inspiration for Those That Have Just Received a Donated Organ;
• Establishing May 13th as Florida Living Donor Day;
• Building Sand Castles of Hope with pediatric kids and families;
• Writing the Song, Surfer’s Story, Now in the Library of Congress;
• Bill’s Mother and Father are responsible for the Dedication of the Hahn House Museum in Wisconsin, Bill continues to protect that legacy;
• Bill’s Mom and Dad are responsible for the Dedication of the Great Sauk State Trial and having it placed on the National Registry of Historic places, Bill continues to protect that legacy
• Bill is responsible for the creation of Life River Walk to be completed in 2018, that is adjacent to the Hahn House.
Bill has dedicated his life to others. This book, much like the man, is an amazing testament to his determination, hard work and faith. It is sensitive and inciteful. Just check out all the You Tube videos that go with each and every chapter of this book. Prayers, music, interviews, poems, and live events, showing the heart and soul of this Christian Kidney/Organ Donation Advocate. The strength, selflessness and sensitivity to the needs of others are the essence of Bill Hahn.
Bill teaches us,
“Godspeed to all those waiting. Gods grace to all who receive the Call.”
This book is a vivid reflection of this great man.
By Troy Zimmerman, Vice President of Government Relations
2017 was a fantastic year for kidney patients as progress was made towards increasing awareness of chronic kidney disease (CKD) and introducing key legislative priorities. The kidney patient community banded together to protect patients at the state and federal level. Much of this success by National Kidney Foundation (NKF) was due to the work done by advocates like you, working on behalf of kidney patients. Thank you for all your efforts.
Our accomplishments include the following:
On March 1st, 2017, the Living Donor Protection Act (H.R. 1270) was introduced to protect living organ donors and remove barriers to donation by prohibiting insurance companies from denying or limiting life, disability and long-term care insurance to living donors, and from charging higher premiums. It will also help to protect the jobs of living donors while they recover from organ donation. …
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