A Question Answered

In the three years and two months since Ed received his new heart, the question we are asked most frequently is, “Do you know who your donor was?”

Heart transplants are still pretty rare. Only about 3500 heart transplants take place worldwide each year, and about 2500 of those are done in the United States. As Ed describes in DISPATCHES FROM THE HEART, just qualifying to be placed on the transplant list is not easy. If, after 5-7 days in the hospital undergoing constant monitoring, rigorous testing and examinations an individual is listed, there is still no guarantee of getting a heart. Every day, 20 people on the list die waiting for a new heart.

Ed was incredibly fortunate to have received a heart in time. He is living a wonderful and productive life, thanks to the donor and his family. As soon as he had regained enough strength to write a letter, he penned a thank-you note to the donor family. He gave his letter to our social worker at Seton Hospital, who passed it along to the donor family network and advocacy group which handles all correspondence between transplant recipients and the donor families. Someone from that group reads the letter to make sure that nothing was inadvertently written by the organ recipient that could be construed as hurtful or insensitive by the donor family. Then, the letter is delivered to the family.

Over the next couple of years, Ed wrote more letters. He wanted to express his gratitude to the family, give his condolences and let them know that because of their family member’s gift, he was able to continue his life and recover fully. Ed no longer has heart disease thanks to his new heart. The family is fully aware of Ed ‘s recovery, completely informed of his progress and know his name. I compare organ donation to adoption. Organ donation is not open adoption, because the organ recipients are not told the name of the the donor unless the donor’s family wishes to be in contact with the recipient. So, from the recipient’s side, it is a closed adoption. If and until the donor family wishes to open communication with Ed, the correspondence is one- way. This is as it should be.

There is no way for us to know what this family went through and is still going through due to the death of a father, son, brother, grandson, husband, uncle, nephew, cousin- fill in the blank with any or all of these relationship possibilities. Death is hard, and donors are often involved in extremely tragic end- of- life scenarios. As much as we might long to thank this family in person, it may never come to pass. They need to take care of themselves and each other and we must respect and honor their desire for privacy. We used to feel like many people that, had the situation been reversed, we would find comfort in knowing that someone, perhaps multiple people would have their lives saved by someone in our family donating their organs. Believe me, I cannot imagine a greater gift! I am so sure I would want to meet the person who is walking around today, healthy and whole, due to organ donation from someone in my family. Of course, that is my reaction, my thought, without ever having the experience of being a member of OUR donor’s family. I have not walked in those shoes. Ed and I still think of and pray for the donor and his family every single day, just like we did while we were waiting for that precious gift. Whether or not we ever hear from the donor’s family is not about us, it is about what is right and best for them. We honor and respect their decision and remain grateful for every sunrise, every breath, every heartbeat. 

Love and Grace,

Paige
September 2, 2018