Liver-specific Transplant Resources
American Liver Foundation. Your Liver. Your Life.
Mission: to facilitate, advocate and promote education, support and research for the prevention, treatment and cure of liver disease.
California Pacific Medical Center: Liver Disease/Transplant
-> For Patients
Everything a patient needs to know about managing liver disease… health information, brochures, liver cancer, transplant evaluations, FAQs, clinical trials, patient stories, stats, post-transplant, etc.
Primary Sclerosing Cholangitis Literature
A listing of various PSC resources including journals, brochures, and MELD score calculators
PSC Partners Seeking A Cure
States they are “a growing, unique, volunteer organization and we WILL find a cure [for PSC]. We include laypeople, medical professionals, and researchers. We offer education and support, with a strong emphasis on continuing to fund research on the disease. We’re together in the fight, whatever it takes. And it takes a lot to battle PSC. Together in the fight, whatever it takes.”
Kidney-specific Transplant Resources
This is a very neat virtual tool that calculates your risk of various treatment options for kidney disease. You can look at patient survival or mortality depending on various treatments such as dialysis or transplant considering your demographic and clinical history when you start receiving dialysis.
Heart-specific Transplant Resources
What to Expect from Heart Transplantation
This is an extremely thorough resource from Stanford. Every part of the transplant experience is covered from Risk Factors to the Surgery to Recovery to Rehab and so much more.
General Transplant Resources
Mission: To serve as a national voice and inspire all people to save and enhance lives through organ, eye and tissue donation.
Donate Life America assists in mobilizing the transplant community to educate the American public on the need for organ, eye and tissue donation and motivating the public to make an actionable donor designation. The organization publishes brochures, program kits and other materials; provides technical assistance and referral services; coordinates the national campaign for organ, eye and tissue donation; identifies measurable best practices and leads the Donor Designation Collaborative. It is comprised of national organizations and 47 local affiliates across the United States that coordinate donation related activities at the grassroots level.
HRSA: Organ Procurement & Transplant Network
Uniting people and information to save lives.
To address the nation’s critical organ donation shortage and improve the organ matching and placement process, the U.S. Congress passed the National Organ Transplant Act in 1984. The act established the Organ Procurement and Transplantation Network (OPTN) to maintain a national registry for organ matching. The act also called for the network to be operated by a private, non-profit organization under federal contract.
United Network for Organ Sharing
UNOS is a community that manages data for every US transplant, facilitates every organ matching/placement process using UNOS-developed data technology, and brings together medical professional, recipients, and donor families to develop policy.
Scientific Registry of Transplant Recipients
Statistics and data on the nation’s transplant centers (survival rates, number of organs transplanted, median wait times, etc.)
Mayo Clinic: Organ donation: Don’t let these myths confuse you
Unsure about donating organs for transplant? Don’t let misinformation keep you from saving lives. This link has surprising answers to fascinating myths!
“Your prescription for transplant information” (Large patient resource site by UNOS)
Transplantation: Educational Video Series by the Cleveland Clinic
A very thorough series of short videos by Cleveland Clinic’s Transplant Infectious Disease team explaining multiple aspects of life with a compromised immune system and staying healthy after transplant.
Transplant Blog Friends
A Change of Heart
Alin was a ER doc resident who was interrupted by her heart transplant. Her medical knowledge combined with her story is so touching. Reminds me of how my nursing career was interrupted by my need for a liver transplant. Transplants definitely don’t wait until a convenient time!