Tissue donation encompasses eyes, skin, heart valves, bone, and soft connective tissue, such as tendon, vein, and fascia lata (strong connective tissue used for surgical repairs). One of the remarkable things about tissue donation is that, over time, one tissue donor can help as many as 50 people or more.
The actual recovery of tissue takes place in an operating room where it is surgically removed by a specially trained recovery team with Mid-America Transplant. It is then sent to be processed and distributed for transplantation. A specific recipient is not identified prior to the recovery of the tissue for transplant. Most recovered tissue is stored until it can be matched with an appropriate recipient. Corneas might be used within days to restore eyesight, while a lifesaving heart valve might be stored for weeks or months until a perfect match is found. Tissue donor families receive a letter from Mid-America Transplant within four weeks of the donation with an explanation of which tissues were able to be recovered and a description of the uses for each type of tissue.
Recognizing that most donor families want to receive information and communication from tissue recipients, AlloSource – the partnering organization of Mid-America Transplant responsible for distributing bone, skin and soft tissue, implemented a program in February 2006, called Pathways – Giving Back to Donor Families. Here is an overview of the process:
Although the number of thank you letters that Mid-America Transplant is receiving from tissue recipients is growing, we know that many of our donor families do not receive one. Prior to the Pathways program, tissue recipients did not understand that writing a thank you letter to the donor family was an option. Therefore, we feel very encouraged by the progress of Pathways and anticipate that more families each year will receive a thank you note from their loved ones’ tissue recipients.
For eye donation, demographic information on recipients is available if corneas were transplanted in the local St. Louis area. If the corneas were transplanted outside of the St. Louis area, Mid-America Transplant receives confirmation that the cornea was transplanted, but not necessarily any information about the recipient.
Demographic information regarding recipients of heart valves is also available on a limited basis. A specialized process allows the heart valves to be stored for long periods of time. Since a heart valve transplant is dictated by the size of the valves, this storage allows them to remain viable until that specific size is required.
Mid-America Transplant does not receive direct notification when tissue is transplanted and therefore cannot automatically forward this information to donor families. Information on recipients is limited because of the Health Insurance Portability and Accountability Act of 1996 (HIPAA). Health care providers are prevented from releasing specific information about tissue recipients. Only the recipient may approve release of their information. Contact with the tissue recipients cannot be initiated by the donor family.