Resources for Patients and Families

Seattle Children’s wants you to have all the information you need to understand your child’s condition and the transplant process, including how to pay for a transplant.

General Transplant Links

• The Children’s Organ Transplant Association (COTA) provides fundraising assistance for children and young adults needing lifesaving transplants and promotes organ, marrow and tissue donation. All of the information for how to become a COTA patient is included.
• The LifeCenter Northwest organ-procurement organization has information about organ donation. The site also includes information that residents in Washington, Alaska, Montana and Idaho need to become organ donors.
• The Organ Procurement and Transplantation Network (OPTN), the transplant network established by the United States Congress, links together all of the professionals involved in the donation and transplant system. The United Network for Organ Sharing (UNOS) oversees the OPTN.
• Transplant Living is a project of the United Network of Organ Sharing (UNOS). The site has extensive information for patients, including news and a description of what happens during a transplant.
• The United Network for Organ Sharing (UNOS), established by Congress, is a nonprofit scientific and educational organization that matches organs with recipients and collects and manages data about every transplant occurring in the United States. The site offers extensive data on transplants, including information from every hospital that performs a transplant.
  • Read the brochure "Questions and Answers for Transplant Candidates about Multiple Listing and Waiting Time Transfer" (PDF), also available in Spanish as "Preguntas y Repuestas sobre Listas Multiples y Transferencia del Tiempo de Espera para Candidatos a Transplantes" (PDF).
   
• The Washington Transplant Center provides data about donor organs and all solid-organ transplants performed in Washington state.

Recommended Reading

You can check out some of the following books from the Family Resource Center at Seattle Children’s, or find them at your local library or bookstore. Each book we’ve listed links to either the Amazon.com page where you can read about and order the book, or the association that distributes it.

• Organ Transplants: Making the Most of Your Gift of Life, by Robert Finn, is a guide to organ transplants: what to consider, the system and the wait, different types of transplants (heart, lung, liver, kidney, intestine, pancreas and others), anti-rejection drugs, living donors, donors and recipients, traveling for treatment and a glimpse into the future of transplants.
• Organ Transplants: What Every Kid Needs to Know, by the United Network for Organ Sharing (UNOS), provides information for children about their organs, and what to expect before and after an organ transplant.
• Partnering with Your Transplant Team: The Patient’s Guide to Transplantation, by UNOS, is a guide to help patients and their families through the process of organ transplant. It provides the information needed to make knowledgeable health care decisions and it has a place to keep a record of the process.
• Transplants: Unwrapping the Second Gift of Life, Pat Stave Helmberger, is the inside story of transplants as told by recipients, their families, donor families and health professionals.