At the end of last year, dialysis patients were invited to submit their questions about real-life issues during COVID-19. In this first episode of the new podcast, The Elephant in the Room, experts respond to patients’ letters, including Dale Lupu from George Washington School of Nursing, Liz Anderson, a long-time social worker (both of whom were presenters for the Ed Center’s January 2021 webinar), and a kidney patient with “lived experience” John Brandon Bayton, Jr. You can listen to the first episode of the podcast on Buzzsprout here: https://www.buzzsprout.com/1642372/7476073-episode-1-fear-uncertainty-during-covid-19
In March we will be launching our first Patient Support Group meeting by telephone. Having a support group has been one of our goals for years and we are happy to announce it is now a reality. We chose to have the group meet by phone instead of online or in a Zoom meeting because we think most everyone has a phone. And we want the support group to be available to all patients at any stage of kidney disease and to their families. On the second Tuesday of each month, at 3:00 pm Eastern, you can call and join in [...]
By Jewel Edwards-Ashman I started the year 2020 anticipating that I’d enter kidney failure and have to undergo my second kidney transplant. But I didn’t expect to start doing home dialysis and eventually have transplant surgery in the middle of a pandemic. Transplant surgery in ordinary circumstances comes with a high level of stress and anxiety. Having a kidney transplant during a public health crisis only exacerbated those feelings for me. To reduce my stress and manage my emotions, here are three things I did: I prioritized self-care. Most Americans, even those who aren’t living with chronic illness, have been experiencing [...]
By Elizabeth Steinberg Christofferson, PhD and Leah Grande, MA Preparing for and receiving a kidney transplant, especially during the COVID-19 pandemic, can be an uncertain and overwhelming process. This article discusses tips to promote positive mental and physical health for yourself or your loved ones. Preparing for a Transplant There are many different emotions associated with deciding to go on the transplant list, and all of these feelings are normal and valid! You may feel excited about the potential for improved health and energy, fewer restrictions on what you can eat and drink (although you still want to eat a [...]
During this webinar, Dr. Christofferson will offer advice on how to deal with feelings of fear, isolation, anxiety and stress during the coronavirus outbreak.
Emergency grants can help cover costs for transportation, medication, rent and food when someone is sick. This one-page guide will help you better understand the submission process with a summary of searching, preparing, applying and tracking grants. Included is a list of documents you may be asked to submit with your grant request. Reach out to your social worker if you need help. Check out the guide.
Updated September 10, 2020 We are living in a time of uncertainty with the COVID-19 pandemic, which can lead to stress, fear, depression, and anxiety. We may feel overwhelmed at times and bored at other times. We may be at a loss for how to cope with social distancing, not seeing friends and family, and the possibility of getting sick. If you are a dialysis patient, receiving treatment either in-center or at home, your facility social worker is a great resource for you. Or, if you are a transplant patient, you can talk to your transplant social worker for support. [...]
These booklets were developed for tweens and teens who learn their kidneys are not working and they will need dialysis or a transplant. The booklets provide a brief overview of coping with kidney disease, being part of their health care team, the importance of diet, taking medication, and treatment methods. They also touch on feelings related to having a chronic illness, family and friends, and being a teen. The development of both booklets included input from kids currently on dialysis, parents, adults who had kidney disease as children, and nephrologists. Although both booklets are similar, one focuses on teens who learn [...]
There is a resource—developed by patients with kidney disease—that provides an overview of where to get help with medical bills and employment. The types of medical bill tips highlighted include: An overview of Medicare coverage for people with End-Stage Renal Disease Where you may find help in getting supplemental coverage for the 20% Medicare doesn't pay Assistance for special populations (e.g., veterans, children, people with disabilities, etc.) Programs that help cover expenses related to health insurance premiums, living organ donation and medications. Assistance provided by some electric companies for home hemodialysis patients Employment tips [...]
During this webinar the following points will be covered: 1) Learn about the benefits of receiving a kidney from a living donor, 2) Learn how to talk to others about kidney donation, 3) You don’t need to “ask” someone to donate, it’s all about “telling your story” and 4) Join us to develop a plan for a successful living kidney transplant experience.