Paul - Interview 34
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Paul donated a kidney altruistically to an anonymous recipient in 2008, when he was 53. Being a GP, he’d been aware of the important function of kidneys and kidney failure. He was also aware of the huge difference living donation or a kidney transplant could make to a patient. When one of his patients told him that having a new kidney had been better than winning the lottery, it brought it home to him the difference it could make, and he felt that he himself could perhaps donate.
Paul did some research on the internet and discovered that it was legal in the UK to donate a kidney altruistically to an anonymous recipient. He contacted a specialist nurse [transplant co-ordinator] and started the tests and evaluations to assess whether he would be a suitable donor. These took about six months in total. Paul also discussed non-directed (anonymous) living kidney donation with his family.
The first time Paul went into hospital for surgery, he was told that the recipient was now too ill for a transplant. Paul had to go back home and was disappointed because he’d been prepared for it and had made the necessary arrangements at work. About eight weeks later, he was back at the hospital and, this time, the surgery went ahead.
The operation went well and, about three days later, Paul was discharged from hospital. He felt some discomfort at first but, over the course of two weeks, recovered well and went back to work. This was the first operation he’d ever had and he found it helpful as a health professional to have the experience of being a patient. Paul now has annual appointments to have his blood pressure and kidney function monitored.
To raise awareness of living kidney donation, Paul talked about his experience on TV, radio and in the newspapers. He is also involved in a new organisation that aims to raise awareness of living kidney donation' www.giveakidney.org.uk
Paul was happy to donate, knowing that the kidney would be allocated to whoever needed it most....
The process is quite explicit in that you do not know who your recipient is. You cannot know who they are. And you must not know who they are for it to be a truly non-directed donation. So that much is very...
Afterwards, there is a possibility obviously that people will get in contact, and some pairs of people have done so. I’ve had a letter from my recipient. It was a very nice letter but I’ve not, from my own point of view, felt that it was necessary to get in touch with them.
And I’ve not heard any more from them. I didn’t even reply to the letter in fact, so I don’t see that as being a relationship that we need to encourage or foster or look at. But I mean, again, different people may feel very differently and I think if the recipient had felt very strongly that they wanted to make some sort of contact, I wouldn’t have been discouraging necessarily. But I think it’s very, very much up to them to decide what they would like to do.
I don’t want a kind of relationship where they feel beholden to me in any way. I didn’t do it for them as an individual, because I obviously didn’t know them beforehand. So I did it as a general gift to the population as it were, and to some extent, and well to a large extent I did it for myself because I felt it was the right thing to do. So that somebody benefitted obviously is important, but precisely who that is, is not an issue.
People did raise with me the possibility, you know, what would you feel like if you had known that it had gone to somebody whose morality or somebody who was, you know a prisoner who’d done all sorts of horrible things and was a criminal. And really that doesn’t bother me at all the thought that, you know, I accept that the way in which kidneys are allocated. They’re sort of, the system that ensures that there is a degree of fairness, of course it’s never perfect fairness. It’s not fair that some people get kidney failure in the first place. But tries to ensure that there is a national list as it were, and the next person on the list gets it. I leave it to them to decide really. And I was very happy that that process was taking place.
Pauls immediate family were supportive. Other relatives and colleagues seemed uninterested. He...
I discussed it obviously with my wife and immediate family. No one outside my wife and children were really aware what was happening. I had eventually to tell my colleague at work who covers for me in my absence because I was going to be away for a time, so that had to be sorted out. But, on the whole, I spoke to very few people about it beforehand.
I was confident in my own mind that it was something I wanted to do. I felt it was the right thing to do. My wife was happy with me to go ahead with it. I don’t think she ever tried to dissuade me. And I think my children, who are mostly adults now, they’re in their twenties and late teens, were accepting that it was something that was going to happen. So I didn’t have any doubts or arguments about it beforehand.
Yes. And what kind of reaction did you get from your colleague when you told your colleague?
I’ve been a bit surprised by how a lot of people, I mean other than family members, who I did tell. I mean my brothers and sister and other people, how little comment has been made, interestingly.
I’ve been very surprised that people haven’t been more interested and I’m not sure why that is. I mean maybe a little bit of embarrassment, maybe it’s something that just seems a rather strange thing to do to a lot of people. And I think that’s perhaps it.
Paul was given a date for surgery soon after approval. His first operation was cancelled, however...
Once approval is granted, then things start to move quite quickly because you’ve been approved, you’re healthy and there are recipients. There are people who need your kidneys, so things moved quite quickly after. Though I did have one major glitch in that I was actually admitted to hospital to have the operation done the next morning, and that very evening the surgeon came to see me and said, “Well I’m very sorry but the person who has been allocated your kidney has become very ill and we don’t think they’re going to be fit enough. So we can’t do the operation now.”
So I went home and that was a little bit disappointing and inconvenient obviously because I’d made all the arrangements.
But, in fact, in retrospect, it wasn’t that much of a problem because it took another six to eight weeks I think before the next recipient was lined up. And I went into hospital and everything went straight forwardly on the second occasion.
Paul, a GP, has helped set up a group that aims to raise awareness of living donation. He is keen...
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.
Pauls experience was featured on radio, TV and in newspapers. He hoped it would show people that...
I think that the Human Tissue Authority was publishing a story about altruistic donation and they wanted to have somebody, a person, to give a voice to this rather otherwise slightly anonymous piece of information. And I was asked whether I would be happy to do so.
I think there are geographical reasons for it being me. I happened to be close to media centres so it was easy for journalists to get in touch with me. It was about, the right time had elapsed, so for all sorts of reasons I think my name was put forward. And at that stage there weren’t very many of us, as far as I’m aware. I think I was the 9th or 10th or something like that in the country. So it was fairly, we were a fairly small group of people.
But anyway, as I say, my name was mentioned and there was a bit of a media storm really. The surgery where I work got inundated with phone calls, and we got interviewed by newspapers, by TV and radio and all sorts of people heard me on the radio programmes up and down the country. So that was a bit bewildering actually. I’d not intended that it be publicised in any way. I wasn’t really very keen that lots of people knew.
But I suppose thinking about it afterwards, I mean particularly as it had gone for me straightforwardly, and I’d felt it was fundamentally I think quite a rewarding process for me. I mean I was, I would be keen for others to have the opportunity really, and those who are thinking about it to be encouraged to think about it very seriously. And to feel that they could go ahead and that it was a, you know, that it wasn’t a very strange or bizarre thing to do. And I’d like to put myself across as it were as a normal person who’s made a sensible rational decision. And that other people I’m sure, and I know because I’ve subsequently talked to others, feel the same way. So I just wanted that sort of, I was happy for that to be in a sense put in the public domain.
Paul feels that raising awareness nationally and discussing organ donation sensitively with donor...
Would you like to say a bit about your views on organ donation and the opt out system, or you know, what you think about the whole issue?
I think that the essence of the process, and this is what I understand happens in Spain where they have the most successful process, is that it’s not opting in or opting out that’s the issue. It’s the, probably to some extent a national programme so that there is awareness of the issue.
And secondly very good teams of people to discuss the subject when the occasion, when the potential for donation arises. And I suppose information obviously in the intensive care units and so on, so that any specialists or people involved in the care of people who might potentially become donors, so that group of people is aware and can contact the specialists who are involved in the transplantation straight away.
So I think that there is, you know I’m sure that there are improvements to be made there and I think there are improvements being made there.
Paul, a GP, knew that a transplant made a huge difference to a patients life. When a patient...
I’m a GP, so I do know about – from a professional point of view – the problems of kidney failure and why kidneys make such a difference.
I’m also aware that living donation made a big difference. I think that is an experience that I learned from talking to patients and also a friend of the family who’s son, who’s a contemporary of mine, had a kidney donated by his father 30 years ago. And he remains really very healthy indeed. So I was aware how dramatic a difference it could make to people’s lives. I’m also aware that I’m healthy and fit and that two kidneys are not strictly necessary.
So, with that kind of information in the background, when I met somebody, again it wasn’t just one incident, it was a set of incidents. It was meeting somebody who explained that getting a kidney had been like winning the lottery from his point of view. He was somebody who’d been on dialysis for a number of years.
Right, was this a patient?
It was a patient, yes. It was somebody I saw in the course of work. In fact he said it was better than winning the lottery because he said even winning the lottery wouldn’t have changed his life as much as that. And I suppose I realised at that point I could, it crystallised things a little bit. It made me realise that I could perhaps donate a kidney myself.
Paul was in pain when he came round but this was dealt with quickly. He hadnt slept well and had...
I woke up and just, as I say, there was some pain immediately afterwards but they dealt with that quite quickly. So I then felt pretty drowsy and then, later that evening, I was on the ward.
I had the surgeon come round, told me everything had gone smoothly. I had a device to control the amount of pain relief I received, which worked pretty well. It was a morphine drip that you could control to some degree. And that stayed on and, as I say, apart from the slightly disturbed night as a result of a noisy patient, and I think obviously there was a certain amount of discomfort as I said. But that lasted, so the next day wasn’t great.
But I had visitors, family came to see me and that all went really quite smoothly. That was on, the operation was actually early on a Friday morning and on Saturday, as I say, I had people visiting.
And on Sunday I actually began to feel significantly better. And got out to the bathroom and had various tubes removed. And on Sunday evening I went home. My wife collected me and wheeled me down the long hospital corridors in a wheelchair, in which I felt slightly strange. But, no, it wasn’t that difficult and in fact she escorted me and I went home by train in fact. It was quite easy to do.
So in total you were in hospital for a couple of days were you?
Yes. I went in on the Thursday evening for the operation on the Friday morning and was out on the Sunday evening.
Paul had some pain at first and felt a bit constipated. He recovered quite quickly. He went into...
I came home by train, train and car from the station and then I was at home, pottering around. I spent a fair amount of time lying down or in bed. Obviously it was a bit sore at times and I needed some reasonable strength painkillers, but it wasn’t a big deal.
I got a bit constipated, which I think is always, and I know from what people tell me, that’s always something that is a bit of a nuisance and always gets people down a bit. And it was just quite interesting to have the experience myself. So I look on it as a kind of learning experience and it didn’t last that long. But, for a few days, I think it was probably the symptom in a way that troubled me most. Even more than the pain.
But I actually got better quite rapidly. I went out to lunch, a half hour’s drive away, the next weekend on the Saturday. I can remember I didn’t have much appetite still at that stage, but I was fit enough to travel. And in fact, though I probably shouldn’t have done, I actually went and did a clinical session about a week later, after the operation. And I think, probably in retrospect, I wasn’t entirely well. I don’t think I did anything dangerous. I’m sure I was fine. But anyway, so shortly after that I started driving again. So I was driving within a fortnight and I have no doubt that I was quite safe to do so. It was quite comfortable.
Paul expected to recover well and he did. At follow up, the doctor confirmed that his blood...
I was well aware that there was, quite a lot of research had been done on the outcome for people who had donated kidneys. And that the outlook was very good, that there was some evidence that they actually lived longer and were healthier than the average population. And I know people say, “Well if you’ve only got one [kidney], and what happens if you get a problem with that one,” but the chances of that happening are very remote.
So I had every expectation that, once I’d got over the surgery, that there weren’t going to be any more problems. And indeed my expectation has been fulfilled. I went back and had the surgeon look at me and prod my tummy. And discourage me from doing too much too soon. But it all went very, very straightforwardly after the first, you know, as I say the first couple of weeks of discomfort or so. And I really haven’t had any problems whatsoever. Again, you know, perhaps I’ve been more fortunate than some.
But I do partly think that if you’ve gone into something confident, if you’ve gone into something expecting it all to go smoothly, then that does help for you to recover. If you go in very apprehensive and uncertain, and you go in with a very anxious frame of mind, then I suspect your chances of having problems are probably greater. And I’m sure that’s the case.
So I went in confident, and my confidence has been vindicated. Again I mean clearly there will be a small proportion of people who don’t have such good experiences and one has to take that into account when going ahead in the first place.
I’ve not needed any follow up to speak of at all. I mean I get a request from the hospital once a year to have my blood pressure checked and my kidney function checked. And I get that organised, very straightforward. My blood pressure remains exemplary. My kidney function is completely normal. My single remaining kidney, as far as I’m aware, and everything leads me to believe it’s functioning, it’s taken over. It swells a little bit to do a bigger job as it were, and that’s given me absolutely no problems at all. So I have no, apart from the physical scar, which isn’t even very obvious now, I don’t think there is anything to show for it at all.
Paul said that donating a kidney was a good and useful thing to do. It saves the NHS money. Being...
I think the rewards are, I mean they’re… I think about this a little bit. In particular it’s thinking that one has done something quite useful. And there are all sorts of ways in which one tries to be helpful to people, or not as the case may be, in the course of one’s life. And one does good and bad things. All of us do that.
This is something that is really, I think, unequivocally a good thing, in the sense that you have somebody, hopefully as I say, a recipient, even if it doesn’t work out for them you at least give people the opportunity to get a kidney which is going to make a very substantial difference to the quality of somebody’s life.
So that’s, then there are other sort of spin offs. It actually saves the NHS a good chunk of money, which I actually feel that, since I’m paid by the NHS and take a significant income from them, I’m glad to be able to give something back in a way. So there is an element of that. But I suppose, fundamentally, it’s about feeling personally one has done something that’s useful and that’s been a community service really.
Paul went back to work two weeks after surgery because it was costing him to be off work. He took...
You said you took two weeks off work,
I think that was, I’m effectively self-employed, so it was costing me, in effect, to be away. So I took it as holiday effectively, the time out. So there was pressure on me to go back, but I think that was alright. I suppose if I’d had, you know, I suppose if I was, I know it’s quite interesting in America I know where people don’t have the same kind of benefits, sickness benefits, and people are expected to go back to work much more quickly. I know that the time people take off for operations in general and specifically looking at the amount of time people took after kidney donation, is less there than it is in the UK.
I’m not saying that one way is right or wrong. I mean all I can say is that, for me, I think two weeks probably was enough. And the week I went back I did actually deliberately plan it to be a little bit gentler than, you know, so I didn’t have any other commitments that I didn’t have to have. So it did make it a little bit quieter for me.
Paul looked into reimbursement. It was complicated and he did not need to use it. Money should...
There is a mechanism for reimbursing people for their, but it’s quite complicated and I think I did look into it briefly. But I didn’t use it from my own point of view. I’m fortunate in that I didn’t need to. And I think it would be perhaps a significant barrier for some people, and I certainly don’t think people should have to be punished financially for this. And that there should be a fairly straightforward mechanism for at least covering people’s costs. And I think that’s fair enough and I think it could be simplified.
But it wasn’t a particular issue for me. I think in part because I felt that, you know, that was in a sense a gift I was making. And if there was a little bit of finance attached to it in terms of my time and train tickets, again, even though I am self-employed as I mentioned earlier, the way in which I’m, for each session I took off to go up, I wasn’t having to take time off work. It wouldn’t be, if somebody who was a tradesmen for instance, you know, who was working as a plumber for instance. If they weren’t at work for that particular morning or day, then they weren’t going to get any income. So for some people I can imagine it would be much more important and indeed might be a critical factor in determining whether or not they should go ahead. And I really wouldn’t want finances to get in the way.