May 2025 CKD Insider Newsletter
- one track health
- May 31
- 6 min read
Updated: Jun 3
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! The CKD Insider Newsletter provides actionable information for you and your family to help you manage your health in consultation with your doctor.
In this month’s CKD Insider:
Latest News from Kidney Organizations
AKF Launches new Disaster Relief Fund to Enhance its Rapid Response Program Helping Kidney Patients Affected by Disasters
In preparation for hurricane season which starts June 1st, the American Kidney Fund (AKF) has created a new Disaster Relief Fund, an enhancement of AKF's long-running Disaster Relief Program to provide emergency financial assistance to dialysis and recent transplant patients.
If you are affected and need support you can apply here.
If you would like to donate to the fund to help others learn more here.
AAKP Stop the Itch: Understanding CKD-aP and Kidney Disease
Chronic Kidney Disease-Associated Pruritus (CKD-aP) is itching that is related to kidney disease and impacts 30-70% of patients with end-stage kidney disease. It can be distressing and bothersome, disrupting sleep and daily activities. June 3rd is National Itch Day. In honor of this he American Association of Kidney Patients (AAKP) is hosting an educational event, stop the Itch: Understanding CKD-aP and Kidney Disease, which will feature speakers, including Tejas Desai, MD, MBA, and Hitesh Dhawan, Hemodialysis Patient, AAKP Ambassador.
Date: Tuesday, June 3rd
Time: 3:00 - 4:00 PM ET
Register for the event here.
RSN Kidney Talk Live In-Person Luncheon Meeting, Burbank, CA
The Renal Support Network (RSN) is hosting an in-person lunch eeting where you can connect with your peers, learn tips for your kidney care, and have a chance to win raffle prizes. Following lunch there will be a social gathering.
Date: Sunday, June 29, 2025, 10am-3pm PT
Location: Elks Lodge, Burbank, CA 91505
Sign up here.
RSN Annual Essay Contest: This year's theme is “INNOVATION: Past, Present and Future”
"This year’s theme, “Innovation: Past, Present and Future,” encourages participants to reflect on how innovations in CKD treatments have impacted their journey with kidney disease and/or what advancements they hope to see in the future to improve care and quality of life."
The contest is open to all people in the United States who have been diagnosed with kidney disease, have had a kidney transplant, or are on dialysis.
For submissions to be accepted, they must be typed and not exceed 750 words.
Contest winners will receive cash prizes: First Place, $500; Second Place, $300; and Third Place, $100.
Submit here
The submission deadline is August 10, 2025.
Winners will be announced on the week of September 22, 2025, and winning essays will be featured in RSN’s publication KidneyTalk™ Magazine and on RSNHope.org.
Home Dialysis Central SPARK! Online Education
Home Dialysis Central offers a lot of educational content for patients and care providers. They now have an online education platform called SPARK! Online Education, that offers training, education, and mentorship. While SPARK! is designed as continuing education for nurses and technicians providing dialysis services, the platform is also a good fit for patients and their care partners to provide essential training for performing home peritoneal and hemodialysis. In addition to the content aimed at nurses and technicians, SPARK! includes eClasses for patients, including:
· What to Expect from PD Training and the First Few Months at Home
· What to Expect from Home Hemodialysis (HD) Training
· Your First Few Months at Home on HD
· Switching from PD to Home HD: What to Expect
· Disaster Planning for PD and Home HD
RSN Advocacy Help: Script/Instructions for contacting congress representatives to oppose medicaid cuts. Get the script here.
Your Fun Tip of the Day
Play the Creative Storytelling Dice Game
This Storytelling game from Dave Birss' is a great way to get creative or just be plain silly with your ideas! You can use it solo or in a group by taking turns building on each element. It’s not about “right answers”—it’s about using the icons as inspiration.
Storytelling with Dave Birss' Story Dice (9 Dice)
How to Use Story Dice
Roll the dice→ Click the button to get 9 pictures.
Look at the pictures→ Each one gives you a clue.
Tell a story→ Use the pictures in any order.→ Make up a beginning, middle, and end.
Let Your Imagination Flow - there are no wrong answers!
Another fun game for a group of people - If you like drawing and are looking for a fun telephone like game check out this one: https://garticphone.com/
Pediatric Home Hemodialysis Suggestions from IM-HOME study
What it is: Results from the IM-HOME study were published last year and identified several barriers to home dialysis. The top identified barriers included patient/care partner fear of performing dialysis, insufficient training and education, limited storage space for equipment and supplies, and insufficient home-based support. For pediatric patients, peritoneal and home dialysis may offer increased normalcy and less disruption to daily activity compared to in-center care, but barriers to home peritoneal dialysis or hemodialysis can prove increasingly difficult to address.
Why it's important: These suggestions can help improve home dialysis for pediatric patients:
1. Work with the child’s nephrologist and/or care team to get comprehensive hands-on training with the specific equipment and protocol to be used.
2. Connect with other parents or caregivers of pediatric dialysis patients, especially those with home dialysis experience. This peer-to-peer network offers a supportive resource. The AAKP and American Kidney Fund have lists of resources to get you started, but ask your nephrologist and/or care team members for recommendations as well.
3. Communicate all your concerns with the care team.
4. Request a home visit – in person or virtual – from a social worker or care team member. Walk them through the space, discuss limitations and concerns, and ask questions.
5. Make a list of contacts and post those numbers near the dialysis equipment for quick reference when a question or concern arises.
6. Bring in reinforcements! Caring for a pediatric patient can be overwhelming. If possible, have a backup care provider that receives the same training and can be on hand to assist.
Tips for Dealing with Burnout from Home Dialysis
Home dialysis can offer flexibility and autonomy when compared to in-center dialysis, but it can be an overwhelming and sometimes taxing experience for both patients and care partners. Burnout is common. At the recent 2025 National Kidney Foundation (NKF) Spring Clinical Meetings, attendees and presenters discussed ways in which patients, their care partners, and clinicians can address burnout.
Here are some key takeaways:
1. Build a Supportive, Interdisciplinary Care Team
An ideal care team includes not only nephrologists and nurses but also social workers, dietitians, technicians, and peer mentors. If this isn’t what your team looks like, your care team can help connect you with additional people and services. A team-based approach distributes the burden of care, provides resources for the patient and care partners, and addresses the clinical and emotional needs of patients and their care partners.
2. Utilize Online Communities and Peer Support
Participation in virtual support groups, such as the Home Dialysis Central Discussion Group on Facebook or one of AAKPs virtual support groups, can help reduce loneliness and stress that can lead to burnout. Online communities provide a safe space for sharing experiences and offering support, which can enhance the well-being of both caregivers and patients. When you sign up for this newsletter you also get monthly updates on the latest virtual meetings across the country, allowing you to find a time and day that works for you regardless of where you live.
3. Continue Training and Education
Continued education throughout the home dialysis journey is crucial. Ask your care team for refreshers on dialysis procedures, updates on equipment, and troubleshooting guidance. Continued training builds confidence, instills a sense of control, and reduces anxiety, while improving safety and helping to avoid burnout.
4. Address Grief and Loss
Many patients experience a sense of loss associated with home dialysis. Whether related to loss of health, time, or lifestyle, addressing this sense of loss and receiving emotional care is crucial for maintaining long-term independence and preventing drop out from home dialysis. Your care team can help you find resources for emotional support, such as counseling services, support groups, and peer mentor programs.
If you found this informative, please share this with anyone you know that can benefit from staying informed and getting a boost of positivity.
Download the OneTrackHealth app today!
Copyright © 2025 | Life4ward, LLC | All rights reserved.
Comments