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!
The Road Back to Life Kidney Support Group - NorthWest -
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 - East Coast - 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
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) and let him know AKPSG directed you to him. --------------------------------------------------------------------------------------------------- RSN Tell Your Story Contest - SouthWest - 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. --------------------------------------------------------------------------------------------------- TransplantLyfeResources 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:
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 could include a beach sporting event, music concert, outdoor play, movie or even dancing!
Sitting outside and enjoying music whether it is 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 motivate you to try or at minimum you get to enjoy the music in your chair and feel energized with all the festivities. Outdoor plays and movies are 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.
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.
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.
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