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: Kidney organ transplant advocacy alert, transplant support services, Healthy.io smartphone urinalysis & NKF partnership and your Fun Tip of the Day!
Kidney Transplant Advocacy Alert & Supporting Services
Community feedback is needed in kidney & pancreas prioritization exercises
What it is: The U.S. Department of Human Health & Services (HHS) is changing the process for allocating kidneys for transplantation. The new process is called continuous distribution and is designed to provide a more fair approach to organ distribution. Continuous distribution patient candidates are ranked by their overall score, highest to lowest for the match, so no one factor will decide an organ match. They want your feedback to help determine the weights of the individual factors that determine the final score. Community feedback is an important part of the planning for the future continuous distribution process. Feedback will be collected until March 23,2022 for the Kidney & Pancreas prioritization exercises.
Why it's important to you: This is your opportunity to learn how the system works now and how the future allocation process will work, and provide direct feedback to help shape this process.
How to provide feedback
Step 1: Learn more about continuous distribution on the main information hub page. Resources include patient-friendly animations and recorded presentations that explain the points-based system, organ allocation goals and analytic hierarchy process (AHP) methodology. The videos are short and clear to make it easy to understand.
Step 2: Visit the kidney and pancreas continuous distribution page to watch presentations on factors related to kidney and pancreas allocation in the current system, and track the policy development progress. It is important to review this information before participating in the exercise.
Step 3:Register for the kidney and pancreas continuous distribution exercises. Complete one or both of the exercises by March 23, 2022. Registration requires setting up a user profile and password. Participants may also submit comments by email, fax, or mail. For more details, please contact the OPTN at 1-888-894-6361 or at email@example.com, 8:30 a.m. – 5:30 p.m. ET, Monday-Friday.
Step 4: Read the request for feedback document and add your comments below.
Support beyond what you think you need when getting a transplant
If you or a family member are getting an organ transplant, each member of the transplant care team will provide you with important information and guide you through the process to make it as smooth as possible, often this includes directing you to a place to stay for you and your family before, during and after the transplant procedure is done.
Depending on your circumstances, they might suggest non-profit housing locations in close proximity to the hospital, like Restoring Hope Transplant House in Madison, Wisconsin.
These homes away from home can support you and provide comfort and understanding more than you will realize you need. See the testimonials from past family's who stayed at Restoring Hope, their messages are a good reminder of the importance of providing support for everyone involved including the caregiver and the transplant recipient.
Donate to your local non-profit organ transplant home or to Restoring Hope via Amazon Smile to help support them as they provide the comfort and support to more families going through the organ transplantation process.
XVIVO Kidney Assist Receives 510(K) FDA Clearance
What it is: Kidney Assist Transport is a transportable organ perfusion system that provides continuous oxygenated perfusion for twenty four hours and is better for preserving organ function than cold storage during transport. Recently, the FDA provided 510(K) clearance to XVIVO’s Kidney Assist Transport, which means it is cleared to enter the market and can be sold in the U.S.. Supporting data included a published clinical trial done across 19 European transplant centers, which demonstrated the use of this system was safe and suggested reduced post-transplant complications.
Why it's important: If you are considering a kidney transplant, you will want a viable kidney, providing oxygen during preservation might improve post-transplant outcomes, particularly for kidneys that have been subjected to greater degrees of preservation injury. Any system that can help improve preservation of the kidney while it is being transported will be useful.
Thank you to the organ transplant couriers
Organ transplant couriers often work long stressful 20-hour days wearing PPE gear in airports, planes, trains, cars and hospitals. The job requires them to be detail oriented and have strong critical thinking skills regardless of the hour. There are volunteer couriers and employee couriers who take care of these precious organs, and they can range in age from 21 to 80 and come from all walks of life. Thank you to all that do this important job, and if you want to take part in this important activity, contact your local organ transplant courier center to find out about what volunteering options they might have. Hear the stories from couriers in this recent article here.
Your Fun Tip of the Day!
Stay active this winter!
If you live in a cold region right now and are feeling like hibernating this winter, here are some ideas to get you out and about enjoying the cool fresh air! Exercise is critical to our health as we all know, and sometimes a push or reminder is needed, so consider this your push! Get outside!
Some ideas to get you started! If your looking for someone to go with, check out meetup.com and find a group to go with!
Make a snowman with friends and neighbors
Skiing, or just go to ski resort and get a lift pass to enjoy the view from the top
Hiking, in a new place or just your neighborhood and enjoy the cool fresh air
Zipline over snow covered trees to try something you haven't done before
And if you really can't take the cold, check out an indoor waterpark and pretend it's summer!
For family members that want to check if they have CKD
What it is: At home blood and urine kits to measure the health of your kidneys. If you or a family member has been hesitant to go to the doctor or hospital to get screened for kidney disease or if you are concerned about the potential risk for kidney disease, at home kidney test options are available.
Healthy.io has created Minuteful Kidney, a smartphone app and urinalysis test, and they have partnered with the National Kidney Foundation (NKF) to offer its home urine albumin-to-creatinine ratio (uACR) test kit, free of charge, to people who find they are at risk for kidney disease via a one-minute quiz created by NKF as part of its "Are You the 33%?" public awareness campaign. The test kits help detect early signs of kidney disease, often before any symptoms are present. If you are located in Texas, the Texas Kidney Foundation is also providing free at-home Healthy.io kidney disease screening kits. If you live in Texas, you can learn more and request your free home screening test here.
Additionally, Let’s Get Checked sells at-home blood tests that require a finger prick and can provide an estimated glomerular filtration rate (eGFR).
Why it’s important to you: If you are concerned about your kidney health for you or another family member these at home tests can help you and your family member test themselves at home for signs of CKD and receive immediate clinical results that are used to determine the next steps in consultation with created by NKF as part of its "doctor to determine if one of these tests is the right option for you or a family member.
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