Organ donation

After the dinner you came back and you discussed it with your daughters and your husband?

Yes.

What were their reactions?

Well, it was a surprise to think that something that hadn’t happened before, which looked like a threat to me, might be in the offing. But, after I’d investigated what the risk was, and I think at that time, and possibly still there hasn’t been a death from a live donor because you’re so carefully screened. I had a fabulous range of MOT tests, and I’ve come out very healthy. And they wouldn’t have had me otherwise.

So I think they then realised that it would just be Mum having an operation and, after a few weeks, back to normal. Because in our bodies we’ve got two eyes and two kidneys, and in each case we can get by with one without any detriment to our health. And I haven’t had any complications.
 

Once I’d got an approximate date, I then discussed it with my three children, or I sent my three children an e-mail saying what I was going to do. And they all responded positively.  My wife had been careful not to go either way, to say “You must carry on and do it,” or “Don’t do it.” She knew I was going to do it anyway I suspect. But, if she’d interfered or expressed strong emotions about it, then of course it would have made life difficult for myself. It would have made it, affected my, it might have affected my decision. So she very wisely just kept neutral. 


One of them [children] is a consultant surgeon, a urologist, so he knows quite a lot about kidney transplants. So he was no problem. And the other two, no they were perfectly content. And they know I’m a bit mad because I often go off and do funny things, so I just follow what I think is worth doing.

No, they were fine. Absolutely no stress and no tension. It didn’t create tension within the family. I think my wife must have felt a bit, must have felt pretty anxious from time to time, but she never showed it.
 

You talked to family and friends and you said that most people were against it?

Well, in a sense they were not sure that it was a good idea. I won’t say they were stubborn and stopped me. But they were, I can’t say everybody, I’m sure there were some people who were saying, “This is a really amazing what you’re going, what you’re willing to do.”

But I remember a lot of people were very cautious saying, “I’m not so sure this is a great idea.” And my mother was completely against it. And she just, you know, I had to kind of pacify her. I guess she was concerned. That’s why, people were concerned about the implications for me. But what’s interesting is that it makes you realise how little people know about what’s involved.
 

[My ex-husband] I knew would be right behind me, whatever I wanted to do he would know I’d already done my research. And I wanted to do something, so I knew he’d be behind me.

My son I didn’t tell until after the second evaluation because I thought there’s no point telling him if they turn round and say, “Well sorry, we’ve done initial tests, it’s no good. It can’t proceed.” So I waited until I thought this looks like it is going to go ahead, and I then told him what I wanted to do.

But I made it very clear that it wasn’t the be-all and end-all. I didn’t want to put him under any emotional pressure to say he had to support me. I almost made light of it, and said, “This is something I’d like to do, but it doesn’t really matter, you know. What do you think of it?”

And he said, “Yes, presumably you’ve looked into it?” So I said, “Yes.” He said “Oh fine.”  A bit later though, after a few more evaluations, he was being very quiet and I found it hard to talk to him about it. And I said, “Look, I’m coming back and telling you about my tests, but you’re just not saying anything. Not quite what I expected.” I said, “Are you happy with this?”  And he said, “Well no, I’m not actually.” So I said, “Fine.” I said, “At the weekend we’ll get together and we’ll go over,” and I said, “Really, I’m not that bothered if I don’t do this because there’s many other things I can do in this world to help people. But this just happens to be one of them. You, my family, comes first and always will do.” So I said, “If you really don’t want me to do this,” I said, “I won’t, and it won’t matter.” But I said, “Now is the time to say, not when it gets much nearer.”

Anyway, at the weekend we got together and he’d obviously then taken his doubts seriously and done lots of Googling. I don’t even know what they were, and he said, “Don’t worry, Mum.” He said, “I’ve looked up on the internet and I don’t have any worries at all, and I’m very proud of you.” So he was right behind me. So that was good.
 

Two of my closest friends, who were school friends, were pretty unpleasant with me about it. And I’ve talked to other anonymous donors, who’ve had a range of reactions from their friends. Some of them very supportive, and saying “Good for you, go and do it if you want to.” And others who were very tight lipped and disapproving, using words like, “Wrong,” it was, “Wrong to do it.”

But when I pressed for why it was wrong, no coherent explanation. And other people have suggested that some people feel challenged by that and aren’t very happy to be challenged, and react with resentment. And I can think of no other explanation in the case of two school friends.

But other school friends, because I still have several school friends who are amongst my best friends, have been very friendly and nice. So it hasn’t had, you know, I haven’t, and amongst the people I was working with, I was working full time then as a teacher, I’ve since retired, I didn’t get any negative reactions.
 

I think that one of my chief tasks I’ve set myself in a way, I mean apart from everyday work, is to do some of the things that we’ve discussed about encouraging other people to look at the possibility, because it’s my belief that there are probably quite a lot of people who would be happy to consider donation. But I think there are certain barriers. The barriers are things like lack of information, so that’s something that I would like to address. There are barriers in terms of people thinking it’s a very odd thing to do. And I think embarrassment and uncertainty are quite strong deterrents.

So if we can present a group of ordinary people as it were, who’ve gone ahead with this, then people will perhaps think, “Well actually it’s not such an extraordinary thing to think about. It’s not such a bizarre… I’m not necessarily an oddity to be going forward with this.” And I think that if we can help to put this information about and make people aware of it, then, and I feel that there are likely to be a significantly larger group of people who would go forward, which would have I think substantial benefits.

We all know that there is a severe shortfall in the number of potential donors. We know that living donors have advantages over donations from people who’ve obviously lost their lives. So I think that increasing the number of donors has a huge potential. Substantial impact on the health for a large number of people.