Welcome to the Chronic Kidney Disease Insider Newsletter. If you are living with chronic kidney disease (CKD) on dialysis, have had a kidney transplant or are helping care for someone who is, this newsletter was created for you and your family! The content is meant to keep you and/or a family member up to date on the latest information to help you manage your health now and in the near future in consultation with your physician.
In this month’s CKD Insider: Support Group Meetings, AKF Disaster Resources, Resources for New Transplant Recipients, New FDA Approved Drug for Kidney Transplant Recipients, Updated OPTIN Policy for Multi-Organ Transplantation and your Fun Tip of the Day!
News from Kidney Organizations
The Road Back to Life Kidney Support Group - North West - Washington If you are living in the northwest and are looking for a local support organization, the Western Washington Kidney Support Group has many resources and hosts support meetings once a month. See below for the next meeting. Online Support Group Meeting July 11th, 1pm - 2pm PST Sign up & join here.
AKPSG Mental Health and Kidney Disease Webinar - South East - Florida The All Kidney Patients Support Group (AKPSG) is a welcoming support group for anyone with kidney disease and their care partners in the Tampa Bay area of Florida. They host monthly empowerment meetings that are held on the last Sunday of the month. See below for the next event. July 30th, 2023, 3:30 PM EST Zoom Presentation Topic is Mental Health & Kidney Disease Join here. Funding available for transplant receivers to assist with their medications in Florida The National Kidney Foundation of Florida’s Hawthorne Patient Assistance Fund will provide short-term financial assistance to qualified kidney transplant recipients to meet the cost of their kidney transplant related medications (immunosuppressant and prophylaxis drugs), while they seek out other longer-term solutions. Approved patient applicants are eligible to receive assistance of up to $1,000 per month, with a lifetime maximum of $3,000, paid directly to their pharmacy of choice. Please contact Joseph Karan, Director of Advocacy at the National Kidney Foundation of Florida (jkaran@kidneyfla.org).
RSN Tell Your Story Contest - South West - Southern California The Renal Support Network’s annual essay contest deadline is coming up on August 10th, 2023. Each year has a theme or prompt. This year, the 21st annual contest asks you to answer the question: How do you use your creativity to help cope with kidney disease? Essays are a maximum of 750 words. August 10th, 2023 Deadline Learn more or submit your essay here. RSN also publishes patient-authored articles, highlighting the voices of those with kidney disease. Learn more here.
HDU Webinar: Dialysis at Home: Let's Talk About It: Advocating for Change - Importance of the Patient Voice This webinar is hosted by the Home Dialyzors United (HDU). Make sure to register early as registration will close once the session is full. On-demand viewing of previous sessions are available. Thursday, August 17, 2023 6:00 - 7:15 PM EST Register here.
AKF Resources for Kidney Patients Affected by Typhoon Mawar In May, Typhoon Mawar hit Guam knocking out power to thousands. For those on dialysis, power is needed to perform dialysis whether at home or in-center. The American Kidney Fund (AKF) has provided a list of resources for kidney patients affected by Typhoon Mawar. The list includes contact information, financial and housing assistance, resources for obtaining medication, and more. It is a good idea to have a plan in place in the event of a natural disaster. AKF has put together a guide for disaster preparedness for kidney patients to help you prepare.
TransplantLyfe Resources for New Transplant Recipients Everyone’s journey through transplantation is unique and often includes many unknowns. It is important that you prepare for the changes ahead. But you do not have to prepare for this transition alone. In addition to your support system of loved ones and healthcare providers, TransplantLyfe has several resources to help you navigate this transition:
Post-Transplant Expectations and How to Deal with Life Post-Transplant – Manage your expectations and prepare for the unknowns ahead.
Self-Advocacy in Transplantation – Learn how to navigate a healthcare system that can be daunting.
Your Fun Tip of the Day!
Get Outside & Enjoy Local Events! Summer is here, it's time to get out and start enjoying all the activities your local community has to offer! Depending on where you live community activities can include a beach sporting event, a music concert, an outdoor play, a movie or dancing! Sitting outside and enjoying music for a music concert or a dancing event can quickly put you in a different state and help you appreciate all that life has to offer. Even if you don't dance watching others can make feel energized with all the festivities. Outdoor plays and movies are also a great way to transport you to another place, making you forget you're only a few minutes from home.
What to do: Check your local community circular or town website and look for the events calendar. You might be surprised to see that your town or an adjacent town has a lot to offer! You can do the online research while you're in dialysis, and make some fun plans that you can look forward to when you're not dialyzing. If you're in the mood to get out of town and are thinking about a vacation read the previous post "Are you ready for a vacation" to learn about what you need to consider and plan for when traveling on dialysis.
For Transplant Recipients: New policies for multi-organ transplantation
The Organ Procurement and Transplantation Network (OPTN) had previously established eligibility criteria and safety net policies regarding simultaneous liver-kidney allocation. Effective June 29th, 2023, the OPTN has implemented new safety net policies for kidney-after-heart and kidney-after-lung allocation. The new safety net policies are similar to safety net provisions already in effect for kidney-after-liver allocation.
When determining allocation priority for kidney transplants, the safety net provision will give priority to qualifying heart or lung transplant recipients who are listed for kidney transplant within one year of their heart or lung transplant.
They will will begin reporting data for simultaneous kidney-heart and kidney-lung allocation in September. The new OPTN criteria can be found here.
For Transplant Recipients: The FDA has approved PREVYMIS® to prevent CMV infection following kidney transplant
What it is: The Merck drugPREVYMIS®, generically known as letermovir, was previously approved for preventing CMV infection in patients who have weakened immune systems following bone marrow transplant. On June 6th, the FDA approved the use of PREVYMIS® to prevent cytomegalovirus (CMV) reactivation in patients following kidney transplantation.
Why it’s important: More than half of adults have been infected with CMV by the age of 40, which is dormant in most adults. Because of the immune suppressive drugs that are taken following kidney transplantation, adults who have previously been infected with CMV are at risk of reactivation of the virus. A simple blood test can determine whether you have dormant CMV and thus would benefit from PREVYMIS following transplant.
Learn more:
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