Liver Transplant Resources and Links
If your child needs a liver transplant, you may feel frustrated, isolated and helpless. It sometimes helps just to know there are others who understand what you and your family are going through. We've provided a list here of a variety of resources available to you, both within Children's Hospital and elsewhere. Please don't hesitate to talk to your transplant coordinator or other members of the transplant team if you need more information.
Children's Hospital resources
The Connelly Resource Center for Families is a quiet place to take a break or nap, browse through information on healthcare, finances, parenting and education, do laundry, surf the Internet and more. You can talk with other parents whose children are hospitalized. The Family Learning Center in Connelly offers many classes to help families learn new skills they need to care for their children in the hospital or at home.
The Child Life department helps children and family members cope with the healthcare experience through developmentally appropriate activities, education about and preparation for medical procedures, and emotional support.
Our transplant coordinator, Shaune Urban, MSN, CRNP, is always ready to help; you can reach her at 215-590-4281.
Amy Sorenson, in the Hospital's Department of Social Work, can help your family with travel arrangements and insurance questions related to your child's transplant. You can reach her at 215-590-3773.
Other Web sites
A variety of national organizations offer health information and support for patients and families struggling with chronic liver disease and/or transplant issues. Follow these offsite links to learn more about these organizations:
- The American Liver Foundation is a national, nonprofit health agency dedicated to preventing, treating and curing all liver diseases through research, education and support groups.
- Children's Liver Association for Support Services (C.L.A.S.S.) is a nonprofit, all-volunteer organization serving families whose children are confronting liver disease and transplantation.
- Children's Organ Transplant Association offers fundraising assistance for families with children who need liver transplants.
- Coalition on Donation educates the public about organ and tissue donation.
- Gift of Life is the organ and tissue procurement organization (OPO) serving eastern Pennsylvania, southern New Jersey and Delaware.
- The National Institute of Diabetes and Digestive and Kidney Diseases is a branch of the National Institutes of Health that offers health and research information about a variety of digestive diseases that can affect the liver.
- National Foundation for Transplants provides fundraising assistance to patients for the portion of transplant costs not covered by insurance.
- National Minority Organ Tissue Transplant Program is dedicated to educating minority communities about organ and tissue donation in order to increase minority donors.
- Transplant Recipients International Organization, Inc. offers transplant and donation information and resources.
- The United Network for Organ Sharing (UNOS), which maintains the national transplant waiting list, offers a variety of resources to those awaiting transplant and those who have already undergone one.
- The U.S. Department of Health and Human Services' Donation Initiative provides information about organ donation.
- The Wilson Disease Association serves those with this genetic disorder, which affects the brain and liver.
Books and other materials
Your community library and local bookstores can provide suggestions on books generally related to transplant (not necessarily focusing on liver transplant only). Many of the nonprofit national organizations listed above can provide you with suggested reading lists. If you want more detailed information, try inquiring at a medical library associated with a medical school in your area.
While there are few books related specifically to liver transplant, we have found several books helpful:
For children
Lizzy gets a new liver
Author: Lizzy Ribal
Publisher: Bridge Resources
Publication date: June 1997
Out of print
For adults
I'm Glad You're not Dead: A Liver Transplant Story
Author: Elizabeth Parr
Publisher: Journey Publishing
Publication date: January 2000
Buy it now at Amazon.com.
It Gets Dark Sometimes: My Sister's Fight to Live and Save Lives
Author: Jeffrey Marx
Publication date: 2000
Get ordering information online.
To the Edge and Back
Author: Chris Klug with Steve Jackson
Publication date: 2004
Buy it now at Amazon.com.
Reviewed by: Elizabeth B. Rand, MD
Date: November 2005
Contact Us
- 215-590-4281
