Letter to donor relatives

Hello everyone,

Been putting it off but know it needs to be done. I was transplanted 2 months ago and need to write to express my condolences and gratitude. Anyone have any good tips on composing a difficult thing.

All replies gratefully received.

[Hidden]

This is most likely the hardest letter you'll ever have to write. It is so hard to find the right words, especially during this very emotional time. I still have mine backed up and shall send you what I wrote in a private message.

[1football in reply to Hidden]

Hi Richard

Could you copy me in that please as I can only get to opening lines, am 5 months post now and doing really good well

Huw

[Hidden in reply to Hidden]

Thanks, that would be great.

[Hidden]

Hi snoutie

I’m in a similar situation. My transplant was 9 weeks ago today (you don’t forget do you). I’m waiting for more info on my donor (if I can get it) and advice from the Assessment team as to when I can write and general guidance as to what to write - they said before the tp they knew how traumatic this would be. I feel they deliberately make you wait so you can be seen to be (hopefully) on the road to a good recovery 😁

Miles

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[Adelou]

Hubby is coming up for 6 months post transplant

We decided it was probably best to get to the 6th month milestone before writing the letter

He didn't want to write it too soon in case there were why complications with his health after his transplant.

The weekend was another milestone as he travelled from London to Glasgow on the train on his own unfortunately it is for his uncles funeral who died from liver cancer

[chugalong]

Yes it is one of the hardest letters to write. It will just seem the right time one day to do the writing. I tried but just couldn’t finish but at about two years it just flowed into paper. On that day my thoughts and feelings just went on paper. I also included a separate letter at the same time, as it has to be sent to your to coordinator, a letter to all involved. The gratitude one feels to our donor,their family and all involved can never ever be truly expressed so to show it I try as much as I can to so look after myself and follow as much as possible the advice given. What a birthday present I was given three days before my birthday

[Hidden in reply to chugalong]

Hi chugs

Good post. I want to write but feel I’m being “told” to wait by the assessment team. They haven’t actually said wait but I think they want me to be further along the road to recovery (I hope - 9 weeks now since tp 😁).

Did you get confirmation it was OK to write ( I mean of course it was OK at 2 years lol - but before that? How long since tp now?). How do you feel now?

Miles

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[Hidden in reply to Hidden]

Miles,

I am two months post transplant after a 19 month wait, type B blood. My focus was entirely on the operation to the extent I didn’t think too much about life after. The donor was a young woman, who passed suddenly, so I have a good liver and the recovery is going well. Self employed, so no sick or holiday pay.

It’s still a roller coaster of emotions, my/your lives have irrevocably changed. This is another hurdle to get through.

[Hidden in reply to Hidden]

Thx snoutie.

[Hidden in reply to Hidden]

Don't worry about the time element, there is no hurry. We are all different, and emotionally we are all having to deal with this in our own separate ways. I was a terrible mess for a while, as my heart was full of guilt and I felt so unworthy of a second chance (my transplant was due to alcohol abuse).

But having said that, my respect for my donor is one of the reasons that I will never drink again. I made a secret promise to my donor that I would never knowingly do, or take anything that could cause harm or damage to this gift.

[chugalong in reply to Hidden]

I am 2yrs 8mths pt. always self employed but not able to do same sort of work now. Do a lot of volunteering and walking while puffing.(not smoking I hastily add). I feel well though aches pains here and there( sometimes think I am over worrying as don’t want to go back to pre tp ever again). I am on 6mth appt now which is great. As far as letter goes it was totally left to me to decided when I wanted to write and it certainly won’t be the last.it just felt so right the day I wrote. It’s a long road from pre transplant to recovery our best thanks is to do our very best for the gift and all the care we have been given.

[Hidden in reply to chugalong]

Thanks chugalong,

Yes, will not find same employment now, shame, as I was able to work all the way up to transplant, albeit from home. Will find something to do, already planning on getting back into sailing, now I can go further afield. Winter coming mind.

So many people have got me to this place and now very much in reflection over the journey so far.

Thought the puffing etc was down to the steroids and antivirals but now realising it is the immunosuppressants.

Putting myself under undue pressure to write the letter but will endeavour to get it done when the time is right.

It’s an emotional journey that only those who have gone through it, seem able to grasp.

Grateful for yours and everyone’s input/thoughts.

[Hidden in reply to chugalong]

Thanks chug!

[Hidden in reply to chugalong]

Thx chug

[Hidden]

It would appear that there are a few of you who maybe struggling with the letter to the donor family. Like I've said before, this is most likely one of the hardest letters you'll ever have to write. Especially at the time when your possibly feeling an emotional wreck, (having a liver transplant is a very emotional journey, I think you'll agree).

I sent a copy of the letter I sent to the donor family to snoutie in a private message. I have since been asked if I would kindly share. I hope this may help some of you, it is a bit emotional, but then it is pure, heart felt, and full of personal sentiment.

Dear Donor Family,

“Thank You" these two words seem so inadequate for the gift of life you have given to me.

You have given me a second chance to live. I will be able to see the sun rise and set, feel the rain and sun on my face, hear the wind in the trees, and listen to the birds sing. I will be able to hug and be hugged.

I must offer my deepest sympathy for your loss, mere words from a stranger, but heartfelt just the same. Perhaps, in your generous donation your family and mine will be able to "Celebrate the Life" of loved ones both past and present.

I know nothing about the donor only that they must have been kind, caring, compassionate, and generous, something they had to have learned from you, their family.

I feel that each new day has endless possibilities, and that my horizons are without bounds. I only hope that I am able to justify the use of this wonderful gift.

I could make you promises of what I would do to make our world a better place, but we all know that promises tend to be broken and time can cause us to forget, but know this, not a day, not an hour, or a minute will go by without my thinking of the donor and their family who without I would not have had a chance to live.

Thank you from the bottom of my heart.

[Gordon99]

I wrote my letter after a few months. I had tried several times before I found the right words to express my gratitude for my gift and my sympathy for their loss. I found examples online aa well as the protocol to follow. I paid particular attention to the posts from NHS sources and The British Liver Trust. I Googled “what to write in a letter to a donor family”.