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December 2022 CKD Insider Newsletter

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: KDIGO request for input for Women & Kidney Health Conference, RSN fitness program, Gift of Life Transplant House, NY Organ Donor Law, One Track Health Mobile App, and your Fun Tip of the Day!


News from Kidney Organizations

KDIGO requests feedback on scope of work for the Women and Kidney Health Controversies Conference The Kidney Disease: Improving Global Outcomes (KDIGO) invites you to provide feedback on the Scope of Work for the Women and Kidney Health Controversies Conference, which takes place Feb 2nd-5th, 2023 in Athens, Greece. The conference will include healthcare providers and scientists from a range of specialties as well as patients to “identify key gender and sex issues in kidney care” with the goal of developing best practices, discussing controversial issues, and identifying where more information and research are needed. If you’d like to share your feedback, you can read the current scope of work here and provide feedback here. KDIGO requests feedback by Monday January 2nd, 2023.


RSN Daily Fitness Programs If you’re looking for a new fitness program for the new year, the Renal Support Network (RSN) hosts daily fitness activities, called Kidney Kin Fitness, for those with kidney disease. These virtual fitness events are held Monday-Thursday each week and can be done at home. Sign up for Kidney Kin fitness classes and other events on the RSN events calendar.


Your Fun Tip of the Day!

2022 Cherished Memories! Are you surprised how quickly or slowly this year has gone? As we come to the end of 2022, this is a great time to reflect back at the past year. Do you have a special moment or memory with family or friends that you cherish? If you do, give yourself the gift of time and sit and feel the love and happiness from those memories. To keep those memories fresh throughout the year, create a memory book and describe in detail your memory so you can refer back to that time when you need a lift to your spirits. If you need some help jogging your memory and keeping the memory close:

  • Go through pictures on your phone, texts, emails, and any cards you have received.

  • Look at your calendar, remember any events or family functions you attended.

  • Pick your favorite 1-3 memories.

  • Take the time to sit and feel the love and happiness from those memories.

  • Write them out in as much detail as you can in a memory book, so on a day when you need a pick me up you can read and remember how great that moment was and how it made you feel loved, happy and/or just gave you a good laugh!

  • If you feel like you don’t have any or many memories to pick from in the last year you can go back further in your memory.

  • Remember: A new year is coming plenty of time to make more memories!


Gift of Life Transplant House in Rochester, Minnesota

What it is: The Gift of Life Transplant House in Rochester, MN helps any child or adult who is on the Mayo Clinic transplant list by providing housing and general support; a caregiver is required to accompany the person getting the transplant. There are two facilities with a total of 84 guest rooms offering many of the comforts of home. This is not a medical facility, but they do have a house blood draw program so that you don't have to go out early in the morning to get your blood drawn at the hospital, which has been appreciated by many people who have stayed there particularly in the winter.

Why it's important: Transplant house's like this one are an important part of the support system you can have access to as you go through the transplant process. These house's give you the opportunity to interact regularly with people who are going through the same experience as you whether you are the person on the transplant list or a caregiver. Shared experiences can build bonds, and help you stay informed by sharing resources. There are many loving transplant houses in various locations, look for one in your area when you need it, it can make a world of difference.


Reimbursement to living kidney organ donors in NY

New York is the latest state to join others in providing support to living organ donors. The New York State Living Donor Support Act was signed into law this December. Legislation (S.1594/A.146A) provides state reimbursement to living organ donors from New York State (NYS) for expenses incurred as result of donation. The program will cover costs associated with organ donation for those who live within the state and donate to a NYS resident. The goal is to get rid of any financial barrier that may be holding an individual back from donating an organ. To see what your state offers in terms of support for organ donation, you can visit the following organizations:

  • National Kidney Foundation has a map showing the living organ donation laws by state. If you are interested in donating a kidney and would like to know where you state stands in terms of support check out the National Kidney Foundations map of living organ donation laws by state here.

  • The American Kidney Fund® also has a state report card, you can view here.


One Track Health Mobile Application

What it is: A free mobile phone application that allows you to easily view and track key blood test results and get the latest news and educational information delivered to you. Designed specifically for people on dialysis and their care partners. Available on apple store here. Web and Android applications available soon with sharing capabilities.

  • View test results with simple color coding system

  • Customize the dashboard with tests you monitor

  • Track your test results with multiple views

  • Receive latest news & The CKD Insider Newsletter

Why it's important: If you don't track it you can't improve it. Keeping track of your blood test results or those of a family member helps you recognize when action needs to be taken and gives you the opportunity to make changes when needed.

If you want to get a kidney transplant for example, when you make it higher on the list the transplant team will be checking your labs and history to see how well you have been maintaining yourself on dialysis. You never know when that day will come, so make sure you are taking good care of yourself regularly. For the caregivers, you can directly assist your loved one by helping them stay on track with their health goals like sticking to their renal diet.


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