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Part 3: What do you say to the donor family? 

MOST people understand full well that writing to the family of an organ donor is not child’s play.

But it is also not an English exam. The donor family doesn’t care about your shocking spelling and grammar.

They may appreciate, but are not overly impressed by your meticulously calligraphed script either.

All they care about is the acknowledgement and emotion. “God bless you for allowing me to receive this valuable gift of life. I treasure your child’s heart and will live a good life to honour my donor,” means the world to a grieving parent.

And yes, even if the organ is being rejected or eventually fails, the family would still appreciate a letter, because they gave the gift in the first place.

They would still like to know that you appreciate what they did.

For their family, at a time of immense raw grief, it was a momentous decision and not one taken lightly.

I remember hearing from Matthew Legemaate how he agonised over finding the exact right words to describe what the gift of life meant to him and his family.

Knowing that his gain was another family’s loss had an enormous impact on him, which made the letter-writing process even more challenging. But after many attempts and much throwing of screwed-up balls into the wastepaper basket, he did just that. He has also planted roses in memory of his donor.

Having exchanged notes on several grief groups, I know that donor families generally find letters from recipients comforting, so I am sure his donor family was touched to receive his heartfelt letter.

According to one American organ donation site, as many as 90% of donor families are said to welcome letters from the recipient.

Just imagine if an election were won by 90%. That would be an landslide victory, so I cannot underestimate the importance of letter-writing in the organ donor process.

That validation is all-important. It’s not that the donor family wants to stalk you to ascertain whether your mannerisms are in any way the same as their dearly departed’s, but they do want to know the gifts they found so difficult to part with are appreciated and looked after.

When the recipient or their family acknowledges your loss and expresses their thanks, it makes your loved one’s gift feel as if it had real meaning for someone other than the donor family.

Apologies if this sounds crass, but don’t let the failure of your organs stop you or a family member from writing

The donor family doesn’t know the recipient or their family if the donor is a cadaver donor, so whilst they do wish you all the very best, and may be sorry to hear your lungs are failing, they probably won’t be grief-stricken that an anonymous recipient is undergoing rejection or failure of the organs they donated.

They have already suffered the loss of their funny, raucous loved one, who spent every spare moment in the sea and woke them every morning with loud music.

Your donated organ(s) are not who their child or sibling was, so your rejection or organ failure may sadden them, but it is not going to upset them any more than it would to hear of some distant relative dying.

Lara Moretti, Manager of Family Support Services at the Gift of Life Donor Programme in Philadelphia notes that it can be overwhelming to feel you have to write a long letter or find the “perfect words.”

But she is correct in suggesting that simple thoughts and expressions of gratitude are appreciated by the donor family just as much as a long missive.

Finally, what is usually included in a letter to the donor family?

  • The letter is written anonymously, so you may describe yourself as a man in his twenties or a child of eight, but details are limited and names are strictly verboten.
  • The donor family’s loss should be acknowledged, and the writer should thank them for their gift.
  • You can discuss your family situation such as marital status, children or grandchildren.
  • You may describe the type of transplant you received. (One donor may have benefited many people. Complex medical terms should be avoided and so should detail about your medical history.
  • You may explain how long you have waited for a transplant and talk about what the wait was like for you and your family.
  • You should explain how the transplant has improved your health and changed your life. Did you return to work or school, or accept a new job? Did you celebrate another birthday? Did your son or daughter marry? Did you become a parent or grandparent?
  • You can also share your hobbies or interests.

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