Liver Transplant – Letter to Donor family – totally gutted.

[Richard-Allen]

I had my liver transplant back in 2016 due to alcohol abuse and Hepatocellular Carcinoma.

For a good 10-months post-transplant, I suffered terribly with survivors guilt and PTSD. I honestly felt that writing that letter to the donor family was an honest reflection of my gratitude. It helped me to deal with my guilt, and helped me come to terms with the emotional trauma at the time.

Sadly I never received a reply, and I put this down to possibly being too soon, as emotions and feelings over the loss of a loved one were possibly still very raw.

On the 1st of October this year, I celebrated my 5th Liverversary. I thought that maybe time had been a good healer, and so once again I wrote a two-page letter to the donor family.

Today I have just had a telephone call from one of the liver transplant coordinators at the QE. It would appear that this second letter had been returned by the UK Transplant Registry as being unsuitable. They felt that I had broken certain rules by including my name, address and phone number.

I was also told that there was no record of the original letter I wrote back in 2016 either by the QE or the UK Transplant Registry. The coordinator did go on to explain that their system of dealing with donor letters is now much improved and that the person who used to deal with this is no longer working there. The lady on the phone was very sincere and sympathetic.

So, for five years I’ve been thinking that the donor family didn’t want to have any correspondence with me, but now they must be thinking what an ungrateful person I am.

For those of you who may have written to a donor family and have not received a response, make sure you too haven’t had your letter rejected or it has been lost.

I’m not sure what I’m to do next, what would you do?

Richard

[Hidden]

Oh I'm so sorry this happened to you. It must be terribly upsetting right now. I'd write another letter explaining that you believe they didn't receive the first but following the rules of no personal details. You could now include all the great work you've gone on to do and how you offer support to others going through similar experiences.Don't beat yourself up about it though. These things happen and you can't go back and change them.

Best wishes from someone who has benefitted from your kind responses and posts, K 😊 x

[deanw41]

I would just get on with my life. 😊👍

[Tia2021]

Richard I'm so sorry, how awful for you, this is so wrong on every level. Write your letter again explaining everything that has gone on and you now have only had it bought to your attention the protocol in which to correspond and sadly they would not of received the first letter. xx

[Positive001]

Hi Richard. I think if you write again, say that you understand your original letter of thanks was lost. If you say the transplant co ordinaters refused it, they are likely to refuse it again. I would keep your letter fairly short and sweet and to the point in order for it to be successfully passed on to the donor's family this time. Good luck.

Laura x

[h0b0]

My partner received his transplant in the same year as yourself. We send a short letter every year to the donor family. We haven't had any replies but will continue to send them. Of course we would love the family to get in touch but at least they're not returning the letters.

[Cazza_BDA]

Hello Richard, what an awful feeling it must be to think that they never received your first letter.

Write another letter from your heart, just telling them the truth as to what happened and how you feel about it.

Yes it might be rejected yet again by the authorities or the family, but you have to expect that. I know it has been a long time to find this out, but at least you now have time, to try and rectify the situation. You could have just left it and lived life with the never knowing.

I wish you the best of luck, and maybe if you are up for it, find out exactly what the do's and don't are for these sensitive letters from the authorities. Just to guide others trying to do the same thing, exactly what you can or cannot put on letters etc. It would save others from the same heartache.

Wishing you all the best...

[Hidden]

Hi

I have never had a reply either, we sent a letter and a card at Christmas but no response

I understand how hard it is!

We every year do something special, light a candle, release a balloon, drop flowers into the sea, so we remember the special gift.

I try also to think of the donors family, they may have donated a number of organs so may get many letters.

They may just want to remember their loved one as they lived and could find the thought of part of them living on somewhere else difficult. I cannot imagine how it must feel for them.

You don't know if the original letter got there or not, it may well have done

Perhaps you could ask the co-ordinator to enquire if they would like to hear from you

I am sure the last thing to do is upset them after their loss

I hope you realise with all your effort since you have done your Donor proud, I am sure that's the best thankyou you can give

David

[Cb1963]

I've always read your posts with great interest, and of course your comments are greatly appreciated by all members, and you always come across as such a sincere person, maybe the transplant coordinator or secretary have certain requirements that they have to abide by ,a very difficult situation, in the beginning maybe the donor family should be able to have the options to remain unavailable and have no contact with the recipients and let them know this is stated on the on the medical records,and you are aware of this from day one, it leaves them without them guessing further down the line, but these files can be updated if the donor family wants this to happen as the years goes by. I'm unsure how the whole process works, and maybe this system is already in place, but,if they had chance to read your post and the numerous posts on this forum with your knowledge, your kindness, and genuine support, they'll be absolutely blown away knowing that you were the person who received this chance to save other people's lives by explaining that this liver is doing much more than they could ever expect!😇

[MW923]

What wonderful person you are and very blessed. I'm sorry they never your letter I can imagine that did you alot not hearing them and think they want nothing to do with you. I would reach out them afls well, what an amazing gift you were giving. Gift of life.

[Bikafella]

Richard, I feel for you in this situation. I had my transplant five years ago this month. I only felt able to write to the donor family after about six or seven months. I was told that my location and anything that might identify me should be avoided and might not get through. As it happens I did receive a reply eventually after a further six months. I continued to send a message annually but never received a second mesage. I know the donor family has to get through their own mourning and grieving process and we're all different when it comes to this. I only last week started to write another letter ( like a progress report), and my wife asked me if I was writing it for myself or for the donor family, because nothing else has happened in 4 years. So for the time being I am still considering whether it is time to "Let it all go" and assume that they know how grateful I am for their gift but that I dont need to keep thanking them 'ad infinitum'.