Despite the ongoing pandemic and economic crisis, many state legislators recognize the added challenges faced by dialysis patients every day. Some have responded by introducing legislation to increased dialysis patient access to Medigap plans to help patients cover their 20% coinsurance expenses. Others are working to advance legislation to help increase the pool of living kidney donors. DPC would like to recognize some of the patient leaders who are elevating the patient voice by educating state legislators on the importance of these efforts. DPC Board Members Adrian Miller and Pius Charles Murray are pressing for passage of critical legislation in their [...]
By Bryce Mumford, DPC Patient Ambassador My experience with dialysis extends four years: from when my first kidney transplant failed in 2014 to when I received my second transplant in 2018. During that time, the most frustrating thing I encountered was a lack of care coordination. I bounced between several doctors who treated my various health issues independently. Every doctor’s visit required me to provide my full medical history, which was time-consuming and labor-intensive. This was a burdensome task while still working a full-time job to support my family. However, my treatment center began implementing greater care coordination. This meant [...]
By Dortha Pugh-Thompson, DPC Patient Ambassador When my doctor told me I had kidney disease, I wasn’t aware of just how serious it was. Two years later, though, I passed out and woke up in the emergency room, where doctors said I was experiencing both kidney failure and heart failure. Shortly after, I started dialysis. Fortunately, I was able to do in-home dialysis and remain active in my community and my church. Now, even after receiving a transplant, I’ve found my calling as an advocate for dialysis patients, and I am passionate about helping others through their treatments. Over the [...]
Jeff Needham turned his lifestyle around with diet and exercise after he was diagnosed with kidney disease. A true inspiration, Needham competed in two Olympic distance triathlon relays, as well as a three-day, 230-mile cycling ride, in support of a better health care system. In addition, Needham warns about the increased dangers of COVID-19 for dialysis patients and highlights the benefits of participating in a coordinated care pilot program.
Gloria Rohrer lost a leg after needing multiple surgeries when her kidney transplant failed. Rohrer later lost her eyesight in one eye while vacationing in Florida, which could have been avoided with proper care coordination. She could have shut down and become angry with the world, instead Rohrer became a stalwart advocate for patient access to care coordination services, so that others can avoid similar complications.
By Jack Reynolds, DPC Board Member and Patient Ambassador As it is Ground Hog Day, I thought I would come out of my winter hole and blog once more. March is only four weeks away, and it will be time to visit Washington, D.C. and another chance for Dialysis Patient Citizen Ambassadors to bring our issues and concerns to our elected Congressional Representatives and Senators. Although I have made this journey many times since 2005, I am not a “natural” political advocate; and in fact, if not for a social worker, I may have never become a dialysis citizen at large [...]
By Devon Osborne, DPC Board Member and Patient Ambassador Back a couple years ago, I had to sue my employer through the EEOC (Equal Employment Opportunity Commission) for violating my rights under the Americans with Disabilities Act. Below is some of my experience doing that. In light of the recent posts and comments here and elsewhere, I figured it was time to post about the process I went through with the EEOC and getting my case filed and accepted. Immediately after I got home the fateful day I was terminated, I sat down and wrote out exactly what happened and [...]
By Jack Reynolds, DPC Patient Ambassador and Board Member Seasons come and go, and cold winds blow. Holiday Greetings! Well, I would never have made it as a Hallmark card bard. One of my most vivid recollections of Christmas, which is almost dreamlike now, is lying alone in a hospital room pondering my gloomy fate and thinking about my family and what was going through their minds. The previous day I had met Dr. Condon for the first time, and she had informed me that I had undergone renal failure and from this time on would require treatments on the [...]
By Jack Reynolds, DPC Board Member and Patient Ambassador My Grandma Mae lived to be 96 and she had a saying, “One has to learn how to suffer." I think what she really meant was that a person must learn how to handle or manage their suffering whether it be physical, mental, or emotional. Over time most ESRD patients are confronted with a host of these challenges or sufferings. Frankly, I have been spared many of the hospitalizations and complications that many dialysis patients experience. For example, I have a right lower-arm fistula that I have used as my dialysis access [...]
By Jack Reynolds, DPC Board Member and Patient Ambassador This Christmas of 2014, I will have completed four decades of in-center hemodialysis. As this amount of time surviving with a kidney machine as a life partner is fairly rare, I feel that it would be a good idea to discuss or maybe vent my soul about my experience as a dialysis citizen and how it has affected my outlook on life. I plan to keep my blogs fairly short and to only touch on one or two points of interest or boredom, as the case may be, for anyone who reads [...]