By Cortney Beavers of Pell City, AL. One of the most difficult moments of my life was finding out that, despite being only 24 years old, my kidney was beginning to fail. After years of dialysis and a kidney transplant, I learned through my experiences in the health care system what needs to be improved. Doctors and nurses need a better care coordination framework to more effectively treat their patients. I had the benefit of working with terrific nurses and other providers who met my needs and communicated well between one another, but unfortunately that’s not the case for every [...]
By Antonio Green of Virginia Beach, VA. While working in Abu Dhabi, I found out I had kidney disease and needed to begin dialysis. I was able to continue working abroad for a few more years, but a 2017 trip to the hospital showed me it was time to move back home. Since then, I’ve noticed that a better, more coordinated system is needed to help dialysis patients. Even when I had a care coordinator, I found the system never really worked for me. Whether it was managing medications, doctors’ appointments or even my attempts to get a kidney transplant, [...]
By Dori Wolf of Woodland, CA, DPC Patient Ambassador Finding out I had kidney disease in 1984 forced me to change a lot in my life. Thankfully, due to my work to stay healthy, I was able to avoid needing dialysis until 2007. Starting dialysis was a draining experience that required drastic changes to my diet and exercise habits, despite constantly feeling unwell. However, with the support of my family, I’ve been able to follow doctors’ advice and keep up with treatments. A major frustration, however, has been a lack of coordination in my care. I have 32 allergies to [...]
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 [...]