Organ donation

They asked would I like a lock of her [wife] hair? I said, “Oh yeah, brilliant.” They said, “Well would you like us to take a hand print?” And again I said, “Oh fantastic.” So this they did. They took a lock of her hair for myself, my daughter and my son. And we all got hand prints. And they said, “Within a few weeks we’ll be in touch and let you know what’s happened.”

And sure enough they wrote to me within a few weeks to let me know that they hadn’t been able to use Jen’s liver for some reason. It wasn’t suitable for transplant. But that it had gone to a university and would be used to test anti-reaction drugs which I thought, “Brilliant,” so that’s not a waste.

And the kidneys they’d gone to two blokes. [Recipient 1], he was aged 61 and [Recipient 2], he was aged 71. And the operations had been successful. In fact they were both at home doing very well. I was very lucky because, within a month after that, both [Recipient 1] and [Recipient 2] wrote to me which, that was really appreciated, the fact that with all their troubles that they’d taken the time to write. I really appreciated that. In fact [Recipient 1] has written a couple of times to me in fact.

And the transplant people keep in touch. Every, well it should be, I should be getting another one soon. But each year they drop me a line and let me know how they’re progressing and apparently they’re both doing well.

It’s not as if they take the organ and run as it were. You’re kept informed, you can have as much or as little information as you want. If you don’t want any contact with the recipients, fine. Your wish is respected. But if you would like to have contact, then they will, using them as a medium, you can.
 

One of the things that caused me great pain was that I asked a very, very basic question, not to be intrusive at all. I understood that. “Can you tell me who received John’s heart? Was it male or female? And what age range for each of the organs that John gave a gift. That was the only information I wanted. And I was told, “You do not ask questions like that. You are not to have that information.”

And at the time, it is fifteen years ago, certainly if there was one transplant co-ordinator, Tom may be clearer on that, but the chap that I spoke to was not a co-ordinator, he was very much involved in not the hospital where John died, but another hospital. He was very much involved with collating that information. Not necessarily in the clinical setting of when transplants were taking place. And he was the person who said, “You are not to ask those questions.” He was dreadful. It was so dreadful.

I had a lovely son and he did exist for 24 years. And through his gift of life I would just like to think that a co-ordinator [specialist nurse] through their database, whatever, however clinical that has to be, but that that is a possibility that they would have it. That, yes, there are families that would like just a phone call once a year either on the day the gift of life was made, it doesn’t have to be, I mean for John it was very close to his birthday. But, you know, that was the day the gift of life was made.

But something as simple as that, it doesn’t have to be a great big gesture. It’s just something that’s very simple that fifteen, twenty years down the line, that my John’s gift of life is still acknowledged. And in the way that you just make a phone call, you don’t have to send a card, just a very brief phone call or maybe they would like to do a card, whatever. But I think that we’re not here as donor families just for the first month and the first six months. We do exist and we carry that pain, and the joy that hopefully does come out of the pain, that other families have gained from that.
 

The donor co-ordinator [specialist nurse], I couldn’t fault her. She was wonderful. She took locks of Kirstie’s hair and she took hand prints, and she sent them to us so that we, different people had the things for me. She then wrote to us and told us what they had, to confirm what they’d removed. And she told us that a young lady had her lungs, who had cystic fibrosis. Two men had her kidneys, another one had her liver, and a six-day-old baby had one lot of her heart valves. I understand that heart valves can be kept for so long, so as yet I don’t know whether her other valves have been used.

We had a letter, virtually immediately from one of the men who had her kidneys thanking us and just saying how wonderful we were. Then I contacted the donor co-ordinator [specialist nurse] on the anniversary of Kirstie dying, a year on, and she got me information about the recipients, which were all doing well. And at the same time we received a letter from the young lady who had her lungs, which was wonderful. It really was good.

I have since had another update, which is one of the things I do have an issue with unfortunately. Our donor co-ordinator left to have a baby and, although her caseloads got passed on, I’ve never had any contact with the donor co-ordinators in the London hospital since.

I did a thing back in April with Donor Family Network, at the hospital where Kirstie was in [place name] and spoke to a donor co-ordinator from there, who did manage to get me further information about the recipients. So I do feel that we have been let down where that thing is concerned because, as a donor family, you give up something very precious and it I think that someone somewhere along the line could just keep you, being as I showed an interest in the first place, I just feel that on a yearly basis, on the anniversary of Kirstie dying or whatever, somebody could just send us an update regarding the recipients.
 

We have quite clear guidelines as to what information that we give to families and, as I’ve said, we can offer them some follow up either by telephone or by letter. And the guidelines that we will give them some information, we will tell them the age of the patient approximately, we will tell them whether it’s a man or a woman, a child or an adult. We will also be able to tell them the length of time they’ve been on the waiting list and perhaps the length of time they’ve been on the dialysis treatment if its, for example, a kidney recipient. And we’ll be able to tell them what their condition report is, post transplant operation.