After receiving a transplant, most of us have thoughts about our donor. In the case where an organ has come from a living person, it is easy to communicate our feelings about the transplant experience with the donor, who is usually a family member or close friend.
This is true primarily in some kidney donations. For the majority of kidney transplants and almost all other organ and tissue transplants, the donor is someone who has died and whose family has consented to donation. This process has traditionally been anonymous, meaning the recipient does not know the identity of the donor or have the ability to contact the donor’s family.
The system that has been set up for recipients to communicate with the donor family has been through the organ procurement organization (OPO) that coordinated the donation. Recipients can write a letter and give it to the OPO, which will forward it to the donor family. [If the donor family chose to respond, their letter would be forwarded to the recipient through the OPO.] any identifying information would be deleted from either correspondence by the OPO. This includes things like last name, phone number, address and any text that would lead to the disclosure of the donor’s identity.
For some recipients, this process by itself is enough to discourage them from relaying their feelings about their transplant. Some people do not want their words to be read by a stranger in an OPO. For others, however, the biggest obstacle to writing a letter to the donor family has been not knowing what to say, or how to say it. Others need to sort through many mixed feelings about the recent events. Feelings of sadness, guilt, happiness and thanks are not uncommon.
Surveys of donor families have shown that many families do want to hear how the recipients are doing. They message in this is that we, as recipients, should make the effort to express our feelings to the family. A simple, short letter can be very effective. A description of how the transplant has affected one’s life does not need to be long and involved. The underlying message is usually just “thank you.” If a recipient is struck with writer’s block and just can’t follow through with a letter, a simple card can say everything needed in two words: thank you.
As recipients, we have relied on medical professionals, family members and friends, financial helpers and others who have helped us get to this point in our lives where a transplant has given us this second chance. But, all of this outside help would be useless had the family of our donor not consented to donation. We need to take the lead in being responsible to ourselves and to the donor family and say thank you in some way. This needs to be done without an expectation or return contact. If we never head from them, we must respect their right to privacy.
For information about communicating with donor families there are several resources available. The National Kidney Foundation’s Donor Family Council and transAction Council websites both have a lot of great material including letters. The Transplant Recipients International Organization (TRIO) also has sample letters on their website or you can call them at (800) 874-6386. The Transweb Website has a great collection of stories from donor families and recipients, in addition to lots of other transplant-related information.
Other good sources of information and encouragement are at your transplant center. Coordinators, social workers and most of all, other patients, can relay their own experiences in writing their donor families. Professionals can help a great deal because they have probably assisted many other recipients in this process. And, the next time you are in the transplant clinic waiting room, ask other patients if they have written their donor families. You will find a wealth of help and information tips available to you.
By Maurie Ferriter
Reference: Ferriter, M. Thanking Your Donor Family. Transplant Chronicles. Vol.7, No. 4.