For most people living with nephropathic cystinosis, dialysis and kidney transplant seem to be inevitable. To help you through this process, we’ve compiled resources to help answer your questions. The cystinosis community is small but incredibly helpful. If you have specific questions and/or would like to be paired up with someone who has experienced dialysis/kidney transplant first-hand, please email info@cystinosis.org. Click on a topic below to jump to that section.
- Overview: Chronic Kidney Disease
- Resources for your Healthcare Team
- Dialysis: Preparation & Types
- Medicare and ESRD/Dialysis
- Transplantation
- Donor Matching/Options
- Financial Planning & Considerations
- Care During & After Transplant
- COVID-19 & Transplants
- Children & Kidney Transplants
Overview: Chronic Kidney Disease
- National Kidney Foundation
- AAKP Kidney Beginnings: A Patient’s Guide to Living with Reduced Kidney Function
- Kidney School
- Life Options: Living with Kidney Failure
- Kidney Education Foundation (international resource)
Resources for your Healthcare team
- Cystinosis Standards of Care
- “Kidney Disease: Improving Global Outcomes” (KDIGO) Controversies Conference
- Nephropathic cystinosis: an international consensus document
Dialysis
- A to Z Health Guide – Dialysis from National Kidney Foundation
- American Kidney Fund – New to Dialysis
- Home Dialysis Central
- Fresenius – I’m Starting Dialysis
- AAKP – There is a lot to learn about dialysis!
- Bringing Healing into Focus – Dialysis (Canada)
- NKF – Dialysis Facility Complaints: Your Rights and Responsibilities
- Dialysis Patient Grievance Toolkit
Medicare and ESRD/Dialysis
Transplantation
- Care DX
- Transplant Games
- AAKP Kidney Transplantation
- American Society of Transplantation – Power2Save Transplant Education
- Evaluation/Before the Transplant – United Network for Organ Sharing (UNOS)
- The Kidney Transplant Waitlist – What you need to know
- Long-term psychosocial outcomes of adults transplanted in childhood: A social work perspective
Donor Matching/Options
- Alliance for Paired Kidney Donation
- Be the Match
- Matching Donors
- Kidney Donation – how to make the ask
- Exploring Living Donation: An Interactive Panel Discussion (Facebook)
- Living Donors: UNOS Being a Living Donor
- Guide to Living Organ Donation: Georgetown University
- Deceased Donors
Financial Planning and Considerations
Care During and After Transplant
- Transplant Living – Caring for transplant patients
- Transplant Living – After the transplant
- UNOS – After the Transplant
COVID-19 and Transplant
- Nephcure.org COVID response
- NKF Coronavirus
- COVID-19 and Solid Organ Transplant
- Information for Transplant Recipients and Candidates English / Spanish
- COVID-19: Answering Your Transplant Questions Video (Recorded April 27, 2020)
- Transplant Patient in a New COVID-19 World (Recorded May 15, 2020)
Children and Kidney Transplants
Specifically curated for children and parents of children with transplants, below you’ll find video testimonies from adults with transplants, activities for children with transplants, and resources which may provide support through the transplant process.
- AAKP’s Pediatric Kidney Pals
- Pediatric Transplantation
- UNOS Children and Transplants
- Transplant Learning Hub (from Toronto SickKids)
- TransplantU (via the App store)