Organ donation

I have seen my transplant co-ordinator [specialist nurse] once since my transplant. No twice sorry. She came in to see me a couple of days after my transplant to make sure that everything was going well. And then I saw her when I spoke to her about writing to my donor family.

They obviously say that you can know details about, strict details about your donor. And then the option is there for you to write to them if you want to write to them. So I was told the age of my donor, the sex of my donor, and that was it.

And I decided that I would to write to the family and obviously express my thanks. I mean ‘thanks’ is a small word that really doesn’t come across as meaning much. But yes it was the hardest letter that I’ve ever had to write. And to write down in words how thankful and how grateful I am for what their family member did for me was really, really hard.

Yeah. And you then wrote that letter

Yeah.

Gave it to the transplant co-ordinator.

Yeah. I wrote the letter to my donor family and there’s obviously strict guidelines on what you were allowed to put in a letter. I just signed it from [name].  And I gave it to the transplant co-ordinator and then they post it on. They check it. They obviously have to read it and make sure it’s suitable, and then they post it on. And then it’s up to the donor family if they write back to you.

Yeah. And did you hear from them or?

I didn’t. I didn’t hear back in letter form. But the transplant co-ordinator rang me and said that the family had received the letter and that the family had rang the hospital and said how pleased they were to receive the letter. So I didn’t actually get a written letter back but I know that the family did receive it, and that they were pleased with the letter, which is nice to know.
 

After everything I’d gone through I wanted to get in contact with the system. You don’t know if they’ve [donor family] received your letter, if, but you know, what they’re feeling, thinking if they have. And I waited about two years until mentally I was in the right place that I could actually say everything that happened to me, all the wonderful things that I’d done two years after.

I was able to write to them, and I only hope that they did receive the letter and they will look and think, as awful it was to lose their loved one, something amazing has happened. Something has gone to save someone else.

I would like to hear back from my donor family. I don’t know if that will ever happen, but if I have peace knowing that they’re happy, then I guess I will find happiness through that too.

Yeah. And some people said that they wanted to know more about the donor. How old was the person and all that kind of information. Was that something that was important to you, or not really?

Yes. I knew how old the man was. I knew that he was 42 and that’s all I’ve been told. If I’m honest, sometimes I wish I would hear back from my donor family to help me with my healing, as I’ve said, but it may not happen. But that’s how it is.

So I could learn more about this person to see what an amazing person it was that gave me this opportunity. I think what donor families go through must be so traumatic but if they can see the goodness of a story like mine and others, how well we do afterwards. And lets hope that they get that same feeling of like, “Wow,” and for me if I heard back, it would also make me feel “Wow.” But then I have to accept that it may not happen.
 

I was a little bit upset that I couldn’t get any information about the donor. This annoyed me because in different centres around the country, different people are given different information. Now I didn’t want their life story, but I wrote a letter to the family after the op, and it was really difficult to write it because I didn’t know whether that person was a man, woman, age, nothing. So it was very difficult to write that letter.

It seemed very impersonal just saying your family member or whatever. I couldn’t make it any more distinctive than that. And that was upsetting. But that is down to the [hospital name]. That’s their policy on it. But I kind of think, if I was donating, I’d like the person to know a little bit about me. I know it can cause lots of problems because you can get families who are following the recipient and making sure they don’t do anything to harm the organs. I know that.

But it would have been just helpful to have known a little bit of information about that person so I could have built up an idea of him or her in my head. I have no idea about the person at all, and that upsets me sometimes because I’ve got to live with their organs inside me for the rest of my life. And I know nothing about them. So that’s a bit of a sore point with me. I would have liked to have known a bit of information.

I think to the day I die I’ll be thinking, “Who was she? Who was he? Was he or she married, have they got children?” You know, just little questions like that. And I don’t see the harm in giving a little information. Because at the end of the day, as I said, they have consented to do this after their death. And also the recipient has put themselves through a huge operation in order to get those organs, so it’s a very big deal on both parts.
 

I asked about my donor immediately after the operation. I wasn’t told very much. But then I asked a couple of weeks later just before I went home. And I was told she was a 31 year old woman who died of a brain haemorrhage. And I never quite knew what to do with this information for quite a long time. I thought about her a lot. And I remember when I was going through a very difficult time after the operation and feeling so low, I got a real sense, I felt quite guilty because she’d died and I was alive. It was like it was the wrong way round.

But I couldn’t, I had to do well, I felt a real duty, I had to do well for her family. I had to keep going for her family. And I thought about them a lot. I wondered who they were and what they were going through. And wondered whether she had children or whether she, well who she was really. I was very curious to know.

And I regularly, if I went anywhere near, I’m not particularly religious, but if I went anywhere near a church, I’d always light a candle for her. I was always thinking about her, and thinking about the family. And thinking well it’s six months for me, and what are they thinking about, and how are they doing. And then it’s a year for me, and when a year came I wrote to the family and said thank you.

And I said I’m doing really well, and this is what I’m doing, and it’s amazing. I want to look after my new heart and lungs and do my best and just, oh, I was incredibly grateful for them for what they’d done.

And then I wrote again at five years as well. I didn’t get a reply from them. I’m going to write again because I’m going to specifically ask if they feel able to give me more information at this stage. I’ve got a little bit more information, but all I know is that she did have a brother and sister, who were there at the time of her death as well. I’d like a bit more. I’d like to know who she was and what she was like, and what she did for a living. And whether she had children or not.

I’d just like to make contact with the family if possible. But I quite respect if they don’t want to because it’s a very painful thing. But I do think about them a lot, and I think about her a lot, with a real sense of gratitude.
 

I never got a reply back which is, that’s their decision. It’s got to be their decision. It maybe too painful for them. I wrote and told them that I was doing well, and obviously what age I was and I had gone back to college. And I had one grandchild at the time, and you know, what it’s meant for me.

And that might just be enough for them to know that somebody’s life was brought back. And I’m reckoning if they had a son of 22, they could be anything from 40 plus, so there’s a chance they could be grandparents themselves. You know, just to know that somebody else has had the benefit of that must mean a lot, otherwise they wouldn’t have done it.