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:
News from Kidney Organizations
AAKP Webinar: Phosphorus Lowering Therapies (PLTs) – Why Patient Care Choice and Access Matters sponsored by Ardelyx
This American Association of Kidney Patients (AAKP) Healthline webinar is sponsored by Ardelyx, the maker of the FDA aproved drug Xphozah which treats hyperphosphatemia, a condition resulting in an abnormally elevated level of phosphorus in the blood.
Hyperphosphatemia is a common and serious issue for kidney patients, that can lead to bone and cardiovascular complications if not effectively managed. There is concern over drugs designed to help this issue being restricted for use. You can learn more about this issue by reading about the reason the AAKP joined a lawsuit against CMS regarding CMS’s decision to include oral-only phosphate-lowering therapies (PLTs) in the CMS End-Stage Renal Disease (ESRD) Prospective Payment System (PPS). here.
Date: August 8th
Time: 2:00-3:00 pm Eastern Time (ET).
Register here.
RSN 22nd Annual Essay Contest
Each year, the Renal Support Network (RSN) essay contest aims to give patients a platform to share their stories. This year’s prompt is to answer the question, “Which film, television series, book, or song provides you with comfort?”
Submissions deadline: August 10th, 2024
You can learn more about the contest or submit yours here.
The National Kidney Foundation (NKF) Kidney Heroes Giving Day
In honor of kidney community heroes, Kidney Heroes Giving Day is a fundraising event to support the NKF’s work. The NKF supports research, innovation, and education to improve the lives of kidney patients and caregivers. It also advocates for the kidney community to dismantle structural inequities in kidney care, dialysis, and transplantation.
Date: August 20th
Learn more or donate on behalf of the hero in your life here.
Home Dialysis Center: Learning to Self-cannulate – Tips from Fellow Dialyzors
If the fear of learning to self-cannulate is holding you back from trying home hemodialysis or if you are new to home hemodialysis and looking for some tips to help you improve your technique this blog might be useful for you. As a new hemodialysis person the writer shares their tips and what professionals have shared as well.
Read the blog here.
Registration for this year's National AAKP National Patient Meeting is open
The American Association of Kidney Patients has opened registration for their upcoming meeting this September. You can join in person and meet other people in your situation or join for free virtually.
Dates: September 25-27, 2024
Location: Virtual and In Person (Orlando, FL)
Register here.
Your Fun Tip of the Day!
Get inspired!
Have you been watching the Olympics this year? If not, you should check it out. There are many inspiring stories from athletes from overcoming mental health challenges to moving beyond kidney disease.
Even if we can’t all accomplish what these athletes have, we can learn from their lessons of perverseness in overcoming mental and physical challenges to do their best. We can all use the tools in their mental health toolkit. They include writing down your feelings when you are stressed, visualizing what you want to happen, showing up and doing your best, taking time to breath and get help when you need it to maintain a positive mindset.
Summer 2024 Olympics: July 26- August 11th
NBC is televising these events typically in the evening and also available on-demand on Peacock.
Watch and learn
Watch Simone Biles floor routine that led to olympic gold medal (@1:45 watch her flip!)
Watch and Learn about techniques to help overcome stress: Caring for caregivers: ‘The Healing Hut’ at the 2024 Warrior Games hosted by the military. Lt. Col. Stefanie Shaver put together the healing hut to help people handle the mental challenges that we all face. She is in the process of expanding on this, but some of the tools and techniques she shared you can learn about here.
Learn about Simone Biles and read how Mental Health Matters
Learn about Suni Lee and read about her journey with kidney disease
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