Transplant Resources

Join PHA's Transplant Email Group to discuss your questions about and experiences with transplant. For more information contact Transplant@PHAssociation.org.

The resources listed below offer additional information for transplant patients and their families.

Organizations

Transplant Information and Support

Division of Transplantation
The Division of Transplantation (a part of the U.S. Department of Health and Human Services) is responsible for oversight of the organ and blood stem cell transplant systems in the U.S. and for initiatives to increase the level of organ donations in the country. Their website links to all the transplant centers in the U.S. and has a variety of materials and resources.

Second Wind Lung Transplant Association
This association offers email and peer support programs as well as their bimonthly publication "Airways" which is devoted entirely to lung transplant information. They also publish a member directory of lung transplant recipients and candidates. Their website contains a wealth of transplant related information including information about financing transplant, exercising and nutrition.

United Network for Organ Sharing (UNOS)
This nonprofit agency manages the nation's organ transplant system under contract with the federal government. UNOS is involved in managing the national transplant waiting list; matching donors to recipients; developing policies to make the best use of the limited supply of organs available; providing assistance to patients, families and friends and educating the public about the importance of organ donation.

Transplant Living Centers
Transplant Living Centers provide patients and their families with safe, clean, comfortable and affordable housing in the Denver Metro area as they undergo organ transplantation. It provides support, hope and courage during the transplant process.

Medline Plus
Medline Plus is a service of the U.S. National Library of Medicine that connects you to reliable and up-to-date health information, including resources about lung transplantation. Visit their website to explore more on what to expect before, during and after a lung transplant and get answers to your other transplant related questions.

Awareness and Education

Donate Life America
This not-for-profit alliance of national organizations and state teams across the U.S. is committed to increasing organ donation. Donate Life America is dedicated to educating the public about the importance of organ and tissue donation.

International Association for Organ Donation
This group works to educate and promote the importance of organ and tissue donation and to attract additional donors through public outreach programs and educational materials targeted at ethnically diverse communities, locally and abroad.

Insurance, Fundraising and Financial Assistance

Advocacy for Patients with Chronic Illnesses
This organization provides free advocacy services to help patients assert their legal rights and apply for disability.

Caring Voice Coalition
This nonprofit organization provides free insurance counseling, need-based financial assistance, legal assistance for disability applications and claims, peer mentoring and other support services to PH patients.

Children's Organ Transplant Association
The association assists transplant patients and their families in organizing fundraising events. It works with all transplant patients under 21. Under its gift-matching program, patients can receive up to $10,000. All funds raised go to the individual; no administrative fees are collected.

National Transplant Assistance Fund
This group provides fund-raising expertise for patients raising money for transplants, educational information, and financial support to patients through medical assistance grants.

Articles and Online Resources

Patient Information

Transplant Living: Organ Donation and Transplant Information for Patients
Transplant Living is a project of the United Network for Organ Sharing (UNOS), a nonprofit organization that maintains the national Organ Procurement and Transplantation Network (OPTN) under contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services.

Partnering With Your Transplant Team
This book addresses many of the questions and topics related to waiting for a transplant, transplant waiting lists, sources of financial support and life post-transplant. It can also serve as a journal during visits with your transplant team.

Insurance and Financial Information

What Every Patient Needs to Know ("Developing a Financial Strategy - pp. 23-38)
This publication was created to help patients and families through the process of transplantation and to provide information needed to make informed decisions.

PHA's Insurance Resources
This section of PHA's website includes tools and resources on topics like troubleshooting insurance problems; current insurance issues; claims, appeals and complaints; and financial assistance.

Transplant Center Directories

Medicare-Approved Lung and Heart-Lung Transplant Centers
This list reflects up-to-date information from the Centers for Medicare and Medicaid Services. Download PDF

UNOS Member Directory
The search function on this webpage allows you to locate all transplant centers designated by the Organ Procurement and Transplantation Network, sorted by organ or location.

Books

Pulmonary Hypertension: A Patient’s Survival Guide (4th ed.)

by Gail Boyer Hayes
Pulmonary Hypertension Association, 2011

This important book serves as a soup-to-nuts guide for patients and their loved ones covering topics like the mechanics of PH, latest treatments, patient care and lifestyle issues. The fourth edition includes new chapters on diagnosis, caregiving, insurance, legal matters and more. Order Online

Taking Flight: Inspirational Stories of Transplant Transplantation - More Journeys

by Joanne M. Schum
Trafford Publishing, 2011

Compiled by a lung transplant survivor, this collection of stories from around the world provides a glimpse into the lives of transplant recipients of all ages and lung illnesses. Order Online

Taking Flight: Inspirational Stories of Lung Transplantation

by Joanne M. Schum
Trafford Publishing, 2002

Compiled by a lung transplant survivor, this collection of stories from around the world provides a glimpse into the lives of transplant recipients of all ages and lung illnesses. Order Online

I Call My New Lung Tina: Inspiration from a Transplant Survivor

by Shirley Jewett
Trafford Publishing, 2002

Written by a transplant survivor and former PH patient, this book discusses Jewett's experiences with transplant and provides insight into ways patients can take responsibility for their health and medical treatments. Order Online

The Lung Transplantation Handbook (2nd ed.)

by Karen A. Couture
Trafford Publishing, 2001

Written by a double-lung transplant recipient, this comprehensive book covers many aspects of lung transplantation before, during, and after the procedure. Couture wrote the first edition just one year after her operation in the hopes of providing patients with relevant information all in one place. Order online

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