First of all, congratulations! It has been a long and difficult year for everyone, and finally having some protection against COVID-19 feels good. We still have a ways to go though, and since we are still learning about how the vaccines will affect the spread of the virus, it is important that everyone one keeps taking precautions – such as wearing a mask, staying 6 feet apart from others, and avoiding crowds or poorly ventilated indoor spaces. The CDC has also provided some recommendations to help with decision making in daily activities for people who have been vaccinated. The first thing [...]
April is Fabry Awareness Month, which brings attention to a rare disease that affects about 1 in 100,000 people. So, what is it? Fabry is an inherited genetic condition, caused by a mutation on the X chromosome in the GLA gene that leads to reduced levels of the enzyme alpha-galactosidase A (AGA) in the body. This means that the body cannot break down a certain type of fat, called globotriaosylceramide (GL-3), which then continues to build-up in a way that causes the blood vessels all over the body to become narrowed. This causes damage to tissues and organs, including your kidneys! [...]
By Harvey Mysel I’ve often been asked: “Where can I register to get a living donor?” Unlike deceased donation where there’s one national list, (although you can multi-list because some areas have a shorter wait time) there’s no such list for someone looking for a living donor. You must find your own living donor. When you do have someone that is able to be a living donor, many are not compatible with their recipient. Thirty to 50 percent of donor/recipient pairs are not compatible with each other. In such a situation the incompatible donor could still help the person in need [...]
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 [...]
Habitat for Humanity has a program called Housing Plus/Aging in Place to help older Americans improve their home living conditions and quality of life. Rather than taking a one-size-fits-all approach, Habitat assesses and addresses the unique living needs of each person, which may include home repairs, installations of ramps and grab bars, and more. In addition, Habitat connects recipients with other services they need that may address health, isolation, hunger and transportation. Lookup your local Habitat for Humanity to ask about aging in place program availability in your community. Read the full article.
Dialysis patients who are considering whether to pursue a kidney transplant can check out a new resource to help them make that decision. The resource—a guide that was written by patients with End-Stage Renal Disease—provides an overview of the decisions that need to be made when getting a transplant, the rewards and risks involved, and what to expect after the transplant. Patient stories, questions to ask transplant facilities and additional resources are also included in the guide. Download the guide.
If the global pandemic is starting to negatively impact your mental health, there is a resource that can help you better understand and cope with the feelings you are experiencing. This toolkit includes suggestions for: increasing public awareness, building community capacity, using telemedicine and how to stay ahead of the potential emerging issues. Check out the toolkit.
By Elizabeth Steinberg Christofferson, PhD An increasingly vital aspect of the COVID-19 pandemic is how the pandemic impacts our mental health, overall well-being, and how we cope with the pandemic, especially as it continues on for a longer period than we may have anticipated or hoped. This article provides psychoeducation on the connection between stress, chronic illness, and COVID-19, tips for managing anxiety related to these stressors, and resources for further support. Stress During COVID-19 and Symptoms to Look Out for COVID-19 adds to already present stress that impacts patients and families on many levels in terms of their medical and [...]
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 [...]
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 [...]