By Elizabeth Anderson, LCSW, DSW and Dale Lupu, MPH, PhD When I was first told I had chronic kidney disease (CKD), I was grateful that there were lifesaving treatments, but I was also scared because I didn’t have a plan. I worried that I might be in pain or become a burden to my family. I felt better when I was able to discuss my desires and healthcare decisions with my family and healthcare team. What kind of medical care would you want if you were too ill to express your wishes? Like most people, you may not have thought about it, or you may have a difficult time discussing it with your family and [...]
Support the Dialysis Patient Citizens Education Center We want to take this opportunity to say thank you. As you know, it is our mission to reduce the occurrence and delay the progression of kidney disease. We work to accomplish our goals by: developing unique educational programs to empower patients and increasing public awareness of kidney disease. In fact, with your support, this past year we: Addressed the coronavirus pandemic in March with CDC leading a webinar for kidney patients with over 2,500 live and recorded viewers. It was one of the first in the kidney community for patients and was followed by two more webinars on the topic. Increased average webinar attendance by over 250% and [...]
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 significant stress this year. News and events surrounding the pandemic, the election and racism [...]
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.
By Collette Powers, MA, RDN, LDN, ACSM EP The year 2020 has proven to be a challenging year. Not only have many had to fight COVID-19 head-on, but millions have experienced the repercussions of the pandemic such as job loss, increased anxiety and stress, food insecurity, and social isolation to name a few. As our nation continues to fight this fight, we now have to consider and prepare for other illnesses commonly seen around this time of year such as upper respiratory infections (also known as the common cold), influenza (flu) and pneumonia. With fall here and winter around the corner, there are things we can incorporate into our daily routines to help boost [...]
By Arthur Allen, Kaiser Health News Pfizer’s announcement on Monday that its COVID-19 shot appears to keep nine in 10 people from getting the disease sent its stock price rocketing. Many news reports described the vaccine as if it were our deliverance from the pandemic, even though few details were released. There was certainly something to crow about: Pfizer’s vaccine consists of genetic material called mRNA encased in tiny particles that shuttle it into our cells. From there, it stimulates the immune system to make antibodies that protect against the virus. A similar strategy is employed in other leading COVID-19 vaccine candidates. If mRNA vaccines can protect against COVID-19 and, presumably, other infectious diseases, it [...]
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.
By Stacy Ogbeide, PsyD, ABPP, CSOWM DPC Education Center Advisory Council Member Stress Management—a topic those living with heart disease and chronic kidney disease have heard before but now in 2020, takes a whole new meaning. We are in the COVID-19 pandemic—unprecedented times—that are impacting people physically, financially, socially, spiritually, and emotionally. Maybe your healthcare has been disrupted; treatment disrupted; work, social, and family life disrupted. Your current stress management options are no longer working, or you don’t have access to your typical stress management options, which is beginning to take a toll on you. Don’t lose heart—I’d like to share a few thoughts and ideas about how to manage your stress levels during [...]
Medicare Advantage Now Open for Enrollment, "A Mindful Heart": Stress Management Tools for Patients Living with Heart Disease and Chronic Kidney Disease, Kidney Patients and Coronavirus: What Have We Learned? and more!
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.
Between now and December 7, dialysis patients are, for the first time, able to choose a Medicare Advantage plan for their coverage. Medicare Advantage is an alternative to traditional Medicare run by private insurance companies. To help kidney patients explore their options, Dialysis Patient Citizens has established Dialysis Plan Choice, an online tool designed in collaboration with Consumers’ Checkbook for dialysis patients to quickly and easily compare their current Medicare Fee-For-Service plan with the options available to them through Medicare Advantage. DialysisPlanChoice.org helps patients and caregivers more easily understand what plans are available to them, the costs are associated with those plans, and, most importantly, which plans will include their care providers. Dialysis Plan Choice, available at www.DialysisPlanChoice.org, provides patients with a [...]
The DPC Education Center just launched a new online course called: Exercise and the Benefits to You and Your Kidneys. Exercise is important for our physical and mental health. This course explains why exercise is important, how it benefits people living with kidney disease and how you can develop a personalized exercise program that will work for you. Check out the Course
Our two popular booklets, "Tips for Teens Living with Kidney Disease" and "Kidney Disease Tips for Teens Living with Cystinosis" are now available for download in Spanish. These booklets provide information for teens who learn they have kidney disease. They include a brief overview of living with End stage renal disease, the importance of diet and medication adherence, and potential treatment methods. They also touch on feelings related to having a chronic illness, family and friends, and being a teen. Download the booklets
Flu season is approaching, and it is just as important to get your shot as ever before. People with chronic kidney disease are more susceptible to developing severe flu complications, due to a weakened immune system. The COVID-19 pandemic adds some complexities to flu season this year as there is risk for infection from either illness. Although there is no vaccine available for COVID-19, you can lower your risk for getting the flu by getting the flu vaccine. In fact, the flu vaccine prevented 39 percent of flu cases among people that received the vaccine last year. In addition, the types of activities people have been doing to prevent the spread of COVID-19—such as handwashing—will [...]
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 physical health, emotional and mental health, family, school, and social lives. Having a chronic [...]
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 heart-healthy diet!), more time in your day, and changes in quality of life.7 Many [...]
By Alan S. Kliger, MD The COVID-19 pandemic has changed life for virtually everyone on the planet. For most of this year, we have all gone through many troubling emotions: fear, disbelief, anxiety, anger, mistrust, cynicism. We also have learned so much, and have looked to the future for trust, hope, anticipation, and most of all the ability to get on with life beyond face masks, social distancing, closed schools and closed businesses, and to a time we don’t have to worry every time someone walks toward us: might they be the one who infects me. In the midst of such upheaval, people with chronic kidney disease, including those who receive dialysis treatment or who [...]
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 give back in an effort to help other patients. Some clinical trials reimburse patients [...]