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: Travel tips while on home dialysis (HDU) webinar, AKF Kidney Action Week & Kids Art Contest, NKF Kidney Walks, Clinical Trial recruitment for people with Type 2 Diabetes & CKD, GSK Lupus Education Hub, Transplant Readiness Reminder, your Fun Tip of the Day and more!
News from Kidney Organizations
HDU Dialysis at Home Webinar: On The Road with Travel Tips from Dialyzors Home dialysis makes travel a reality, but it can still feel challenging to navigate dialysis while on the road. This webinar from Home Dialyzers United (HDU) features people who have successfully traveled while on home dialysis. They and expert health care providers will offer practical advice for how to navigate traveling, from planning trips and managing supplies to accessing necessary care while away from home. April 20th, 2023, 7:00-8:00 PM EST Learn more and RSVP here.
AKF Kidney Action Week Rewind The American Kidney Fund Kidney Action Week was held last week. Kidney Action Week covered topics including patient experiences, nutrition guidance, and therapeutic options. Recordings of many of the talks can be viewed here.
AKF's Annual Calendar Kids Art Contest Know a kid living with kidney disease or transplant? Have them enter the 28th Annual Calendar Kids Art Contest! If you know a kid with kidney disease or a transplant, encourage them to consider submitting a piece to the American Kidney Fund’s Annual Calendar Kids Art Contest. Thirteen finalists will be selected, and their work published in the AKF’s 2024 calendar. The winners will also receive a cash prize and a canvas print of their artwork and will be honored at the American Kidney Fund's annual national gala, The Hope Affair, on October 19, 2023.
The deadline to submit artwork is June 1, 2023 Learn more or submit a piece here.
NKF Upcoming Kidney Walks There are many National Kidney Foundation Kidney Walks coming up in the month of April. The Kidney Walk raises awareness and funds for kidney-related research, advocacy, and transplantation. Check out the list of upcoming events and see if there is one near you! Find a walk near you here.
NKF Advocating For You On March 23rd, Kevin Longino, the CEO of the National Kidney Foundation (NKF), testified in front of Congress calling for increased funding for kidney-related research. The current budget appropriations for the fiscal year 2023 for kidney-related research at the NIH, CDC, and Kidney X are insufficient to fund critical research and kidney disease screening programs for early detection and prevention. On Demand Link to Testimony is located here. Kevin Longino’s Full Written Testimony can be read here. Want Congress to hear your voice too? You can find information from the American Kidney Fund along with a form to contact your members of Congress here.
KidneyX Launches New Website KidneyX has updated their website with new content and improved features.
Hear about the latest KidneyX prize competition by visiting the Prize Competition page.
Get bios and updates on past KidneyX prize winners, by visiting the Prize Winners page.
Learn about kidney replacement technologies, patient and care partner perspectives on innovation, and how to join the Innovate Kidney Community by visiting the Resource Center.
Participate in KidneyX by visiting Get Involved.
Your Fun Tip of the Day!
Get Creative with AI Tech! Have you interacted with a Chatbot powered by artificial intelligence (AI)? Maybe you were on a website trying to purchase something and had a question, and were able to ask it via the Chatbox text option but only were allowed to ask specific questions and received limited responses. That was most likely a Chatbot powered by AI. If you haven't heard of ChatGPT, it is an AI Chatbot developed by Open AI that allows you to have a conversation with the program and ask questions and receive answers more advanced than the previous example. The next level up from ChatGPT is GPT-4 which allows you to use images and text to ask questions, and get more sophisticated answers and in the very near future a new version will even create a movie for you! Let's see how creative you are or what your ChatGPT conversation might inspire you to create. Maybe you have a movie in you that you didn't know you could develop!
This clinical trial sponsored by Bayer is designed to test a combination of glucose-lowering (Empagliflozin) and kidney-protective drugs (Finerenone) to slow the progression of CKD. The combination will be compared to each of the two drugs individually, so certain participants will receive only one or the other, not the combination. There are 136 locations participating in this trial, so a site may be near you. If interested, please learn more here and scroll to the bottom of the page to view the eligibility criteria.
If this trial is not the right fit for you but you would to participate The National Kidney Foundation maintains a list of trials that you can participate in. Check it out here.
Transplant Readiness - Know when your evaluation expires
To be considered for a kidney transplant, you must be evaluated at a transplant center. This is done to make sure that a kidney transplant is the best choice for you and to make sure you are healthy enough for a transplant. The evaluation will be very thorough, and may take several months to complete, yet you might wait years for a matched kidney. The tests that are done for your initial evaluation include blood tests and many more.
If you have been approved for a transplant following this evaluation, make sure you understand how long that evaluation lasts. You will have to get an updated evaluation after a certain period of time. The transplant center team should contact you, but they might not as they are busy with many people requesting transplants. You need to take control and make sure to mark on your calendar when the expiration date is so you can get re-evaluated when the time comes if you want to be considered for a kidney transplant. You can also have your care partner put the date on their calendar as well so you have double the reminders set up!
Learn everything you need to about a kidney transplant evaluation from the National Kidney Foundation here.
The One Track Health mobile application is now also available on the Web!
What it is: A free mobile phone and web based application that allows you to easily view, track and share key blood test results and get the latest chronic kidney disease news and educational information delivered to you directly in the application.
The app is designed specifically for people on dialysis and their care partners. Available on the Web here.
Why it's important: Staying at optimal health will help you live your best life and be prepared if you are interested in having a kidney transplant. Remember luck = preparation + opportunity. This is part of the preparation phase. Stay on a Healthy Track!
GSK Patient Learning and Community Education Hub for Lupus
What it is: The GSK Patient Learning And Community Education (PLACE) Hub provides educational information on Lupus in both English and Spanish. Lupus can cause the immune system to attack and inflame your kidneys, when this happens it’s called lupus nephritis. If left untreated, lupus nephritis can lead to permanent kidney damage. The educational information provided by this group of experienced professionals includes webinars, tools and resources to help you have a thriving life while living with lupus and can be found here. Why it is important: An educational resource focused on lupus, allows you to stay on top of potential treatment options, gain access to tools and helpful hints to minimize flare-ups so that you can thrive and improve your life. If you have not been diagnosed with lupus, learning about the symptoms and consulting with your physician if you have associated symptoms can be a valuable first step in treatment planning.
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