By Orlando A. Torres After a 30-year battle with chronic kidney disease (CKD), in 2016 I had Stage Five kidney failure. This was the end of a three-decade battle which took countless hours of treatment. For years, I had been followed medically for CKD, having a special test done monthly and eating a special diet. As a CKD patient, my condition affected other organs in my body. The number of regular activities I could do also declined, but I never quit and refused to accept those limitations. I never let CKD limit what I did. I think it is [...]
By Vanessa Evans, Sr. Manager, Patient Communities and Advocacy at Fresenius Medical Care North America and DPC Board Member Brenda and Bernie Alvey are the consummate camper travelers, crisscrossing the United States and taking in sights from the St. Louis Arch to the Grand Canyon. But their camper has a few unusual features, including two recliners, extra outlets, and a homemade stand to accommodate Brenda’s portable home hemodialysis equipment. The Alveys have always loved traveling, but they thought their trips had come to an end when Brenda was diagnosed with Membranoproliferative Glomerulonephritis (MPGN), an autoimmune disease that destroys kidney [...]
For the past 20 years, Victor Gura, MD, FASN, an associate clinical professor of medicine at the Geffen School of Medicine at UCLA, has been working on a wearable artificial kidney, or WAK. Gura has been through multiple iterations - from prototype 1.0, which weighed over 200 pounds, to prototype 2.0, which weighed 11 pounds and was tested in clinical trials in Italy, London, and Seattle, to the latest version, WAK 3.0. Weighing in at just 2 pounds and powered by a rechargeable battery, WAK 3.0 was issued patent number 10,993,183 for a combination wearable and stationary dialysis system. The description [...]
By Shaminder Gupta, MD, Nephrologist End Stage Renal Disease (ESRD) is a life changing diagnosis and impacts both the patient and the family. While waiting for renal transplantation, renal replacement therapy (RRT) is required to sustain life. RRT, also known as dialysis, can be provided either in-center or at home. Home therapies can either be via peritoneum (PD) or via fistula (HHD). Patients are concerned about their own abilities to provide this life sustaining therapy on their own. This is natural and should be anticipated as a barrier. Most of us, including medical professionals, would also share these apprehensions. Success at [...]
New medical treatments and products are continually being developed for people living with kidney disease. Part of the development process for high quality, scientific, and safe options is through research to test the treatment or product before it becomes available on the market. This phase of research is called a clinical trial or a clinical research project. People can volunteer to be part of a clinical trial if they meet the specific requirements for the study. You might consider participating in the research process for many reasons including if it has a personal meaning for you or if you want to [...]
In this presentation you will learn about: 1) the different types of access for dialysis, 2) how to examine and monitor your access and 3) why it is important to avoid catheters.
By Gloria Rohrer, DPC Patient Ambassador As a dialysis patient, it has become clear to me that one of the biggest flaws in the American health care system is the disjointed way care is often provided to patients. If patients have chronic conditions alongside other health complications, it can be exceedingly difficult to navigate the different doctors and hospitals we need in order to receive proper care. When seeing so many different doctors at various clinics and hospitals, patients like me can suffer adverse effects if all our treatments are not designed to address our full medical history, rather than a [...]
By Jack Reynolds, DPC Board Member I have survived on in-center hemodialysis for the last 45 years. I have also received Medicare for all those years to pay for most of my dialysis and other medical needs. I currently reside outside the village of Palmyra, Iowa. One of the first group of Patient Ambassadors to advocate in Washington, D.C. in 2005, I have visited Capitol Hill many times since. Because of the cost, time and effort it takes to keep a kidney patient healthy, I feel that it is important to be aware of issues and legislation that can impact our [...]
During this webinar you will learn the latest on: 1) What kidney patients need to do (dialysis & transplant), 2) What dialysis facilities are doing and 3) What we can learn from New York’s COVID-19 experience.
Updated May 6, 2020 Earlier this month the President signed the “Families First Coronavirus Response Act,” which is a bill that will increase funding to several federal programs in response to the COVID-19 viral outbreak. The bill aids Americans in the areas of healthcare (including COVID-19 testing), nutrition, paid sick leave, unemployment, family and medical leave, and more. Below is a list of resources for dialysis patients to help them get additional support during the COVID-19 viral outbreak and beyond. Resource topics include: disability, financial assistance, nutrition, healthcare, housing and utilities, jobs, transportation, women and children, daily living, and staying [...]