Clare - Interview 37
More about me...
Clare became an non-directed (anonymous) living kidney donor in 2011, aged 59, and discussed her reasons for wanting to donate. In the early 80s, Clare had serious problems with alcohol and anorexia. She was depressed, sought help through the NHS, and was given psychotherapy sessions. She was lucky enough to see the same psychotherapist for the next twenty years or so. With the help of Alcoholics Anonymous (AA), she also gave up drinking.
Clare said her life transformed over the next twenty years as she became very fit and healthy. She felt lucky and grateful to have received help to change her life and wanted to commemorate this by ‘giving something back’. She considered doing the London Marathon, but back pain meant that this was not possible.
Out of the blue, Clare heard a radio programme about altruistic donation. For her, this was a ‘light bulb moment’ and she felt she would be a ‘perfect candidate’. She said, ‘I’m fit. I haven’t got dependants…..Also, being single and not having children, I’m aware that I haven’t left a mark on this life. Well hopefully I have, but there won’t be anything left after I’ve gone. By donating a kidney I will hopefully extend someone else’s life and a part of me, as a result of that, will live on. I will have been able to have given something back.’
The friends Clare spoke to about donating varied in the advice they gave. She was surprised at how many people were against the idea, including her AA sponsor and a friend who was a doctor. She sought advice from her now retired psychotherapist, who was in full support of the idea, and felt reassured enough to go ahead.
Clare did some research on the internet and recalled how difficult it was to find information. She then got in touch with the nearest transplant hospital and began the various physiological and psychological tests to see if she was suitable. She also got in touch with another anonymous kidney donor, who she read about in a newspaper. She said she received valuable support from her and, while Clare was at recovering at home, they met up.
One of the biggest hurdles for Clare was her employer, who did not want to give her time off work. They could not arrange cover for her and so the operation was delayed. She took the time off as annual and unpaid leave, and has now applied for reimbursement of her costs.
Eighteen months after she decided to donate, Clare was given a date for the surgery. Leading up to it, friends were surprised at how relaxed she was. On the day of the operation, she called the hospital but could not get through. When she did, she was told there were no beds available. This uncertainty made Clare feel anxious. After waiting almost all day, she was admitted that evening and the operation took place the following morning.
The operation went very well and Clare was discharged from hospital within a week of being admitted. At the time of interview, she was recovering well and had started exercising again. She was happy that someone else’s life had been transformed because of her donation and advised other people to register for organ donation.
Clare knows that the recipient is doing well and would love to hear more about her. She doesnt...
I’m aware my kidney, well my kidney’s gone to a woman in her forties. Apparently, that’s all I know, who was on dialysis.
And did you ever want more information on the recipient?
I’d love to know more but I’m not allowed to. I was allowed, they said I could write to her but I thought well that’s not really fair, that puts her under great… Why do I want to write to her? Do I want a letter back full of, “Oh thank you so much, it’s changed my life.” That puts a heck of a lot of pressure on her. I would love to hear from her, whether I do or not is up to her. And something I didn’t realise, but of course it’s a big thing for her to have been given an organ by a living person. And she may feel, “Oh my God, I’ve got to live up to this now,” which is a lot of pressure that I don’t want to put on her. So. No.
And she’d been on dialysis before then,
Did you hear about her welfare afterwards?
I’ve just been told that the kidney is working and her kidney values have come down, so it’s working well. The last I heard was a week or so ago, apparently she’s still doing fine. So that’s all I know.
Clare said there were no downsides to donating. She had given a patient many more years of life...
Do it. There are no downsides. I’ve had nothing but good. My health is just as good now as it was before the op. I’ve got the immense satisfaction of thinking there’s someone somewhere who hasn’t got to spend probably, possibly every day or certainly several days a week attached to a machine.
It must be a huge change for her. I mean she’s probably had to, because, apparently people on dialysis they get their own little community so she’s lost her little dialysis community. But she was counselled and she obviously wanted to do it. So I think there’s someone somewhere that has, whose life I’ve changed, not permanently but for hopefully many years. It’s a wonderful thing to be able to think about and it puts a lot of other things into perspective. And nothing but good has come out of it.
And is there anything you would like to say to someone who is thinking about registering for organ donation but maybe isn’t sure?
Why not? I can see no reason not to do it. What possible reason could there be not to do it? You’re dead when it’s done, and just think of the difference it might make to somebody. We don’t need them when we’re gone. I mean it’s just waste, waste of such a valuable resource. It’s tragic, it’s absolutely tragic that organs are wasted every day that could change someone else’s life.
Clare wanted to give something back to the NHS after years of help for alcoholism. When she heard...
For some years now I’ve realised I’m aware of how different my life is now from say thirty years ago. Thirty years ago, I was drinking too much. I was oscillating between anorexia and alcoholism. I was depressed. I was going downhill fast. I’d been stopped for drink driving twice. The second time involved losing my licence for three years, which as a vet was disastrous. In the middle of all that, ironically, I was going out with a bloke who was an alcoholic. And we recognised the problem in each other. And it was him that prompted me to do something about it.
I did, and after a hard struggle I stopped drinking twenty two years ago. A year ago, I realised it was 21 years and I wanted to mark that achievement in some way. I was very aware of the debt that I owed the NHS. I had the most wonderful psychotherapist during this time.
The reason I decided to donate a kidney, I came to really by default. I wanted to do something for myself to put a full stop under my life. “This is what I was; this is what I am now. This is the changeover.” And because I exercise a lot, I decided running the London Marathon would be a good idea. I started training and I couldn’t do it, my back just wouldn’t do it. By pure chance I heard on the radio, I always have Radio 4 on as oral wallpaper, something in the morning about how it was possible to now become an altruistic donor.
Apparently you have been able to do it for several years, but I hadn’t heard about it. And it struck me like a bolt from the blue. It was a real light bulb moment. I thought, “This is it. I’m the perfect candidate. I’m fit. I haven’t got dependants.” I thought that was important if I was going to go into quite major surgery. I didn’t want to not get out the other end and therefore have elderly parents or children that depended upon me. I had neither.
Also being single and not having children, I’m aware that I haven’t left a mark on this life. Well hopefully I have, but there won’t be anything left after I’ve gone. By donating a kidney I will hopefully extend someone else’s life and a part of me, a result of that, will live on. I will have been able to have given something back.
I’ve had surgery before for minor things, it doesn’t bother me. I’m not scared of hospitals, that sort of thing. I have a medical background in that I’m a vet, so I understand the becoming involved, the physiology, so that didn’t hold any terrors for me.
Two months off work helped Clare see that there was more to life than work. Her life had...
Has it made you look at life differently?
Yes. Yes, definitely. I think partly because I’ve never had more than a week off at a time. I’ve had two weeks sometimes, but this’ll be nearly two months. And it’s made me realise how there’s more to my life than just work. I felt I was my work to an extent, and I realise now I’m not. There is life outside work. I’m much more self-sufficient that I thought I was. People need me more than I thought they did, which is lovely.
Yes, but it’s, I just sit, things that were important, aren’t so important now. I popped back into work. I had to. I didn’t want to go, and immediately got my ears bent with the usual moaning about all the problems at work. I thought there’s more important things in life than whinging on about your hours have been changed or something. I’ve really made a difference to someone’s life and that’s fantastic. And that’s much more important than day to day niggles. Yes, so that has made a difference to my life. Yes. Which I didn’t expect at all. I just expected to carry on.
It’s a new beginning really. This is the Clare post-transplant. So my life has been the depressed alcoholic, anorexic mess. To changing that which has been a long process, coping with that, still having self-doubt issues, still not really feeling perhaps right with myself, to the third stage which is just starting now that, “Yes, I’ve put things right.” I’ve done something positive and, from now on, I will go on in the third stage of my life.
Clare said her employer had always been difficult when it came to her needing time off work for...
The initial consultations were quite easy. It was at a hospital which is near, twenty minute’s drive. And that went quite smoothly. Then things stalled a bit because work was a big problem. I knew I was going to have to take time off and, as far as they were concerned, it was elective surgery, so no help from them at all.
They were going to have to arrange locums. It was going to be very inconvenient, and a lot of negative feedback. They said they couldn’t stop me, but they weren’t happy. And I couldn’t do it as soon as I hoped to do it because they couldn’t arrange things, and other vets were on maternity leave and that sort of thing. So that stalled things.
But I still carried on with getting all the tests done, a lot of tests, very comprehensive, physiological and psychological. I had to take time off work. It was very difficult but I plodded on.
They [transplant team] changed the date quite near the time, which was difficult with work. Work has always been the biggest problem to be honest. Every time I had a change, they made no secret of the fact that it was very awkward, that I was putting them out.
So you didn’t really get any support from them?
No. No. None at all, sadly. And after the op, no-one contacted me. But colleagues, nurses, animal care assistants, lovely. The partners haven’t been to see me, haven’t phoned up, haven’t, nothing. I know, and we’re meant to be in a caring profession as well. Not good. But hey I’ve learnt, you know, so I owe them nothing. I’ve been with them for over thirty years. Not good. Still, as I say, I owe them nothing.
At first, Clare was going to cover all the costs herself. After speaking to another donor, she...
Well when I first decided to do it I thought, “I don’t care if I’m not paid. I can cope. That won’t matter.” Then I started to contact [name], who is a fellow altruistic donor. She wrote an article in one of the Sunday papers, which I saw.
I contacted her via the paper and this was quite early on. And I said how I wasn’t going to get any money but that was fine. She said, “No, hang on there. There’s no reason why you shouldn’t get paid. You’re saving the NHS a lot of money by donating a kidney; go for it.” So having originally said to the practice, “Look, I’ll take as much as I can as holiday, and don’t worry about the rest.” I thought no, okay, I’ll see what I can get. So, in the end, it was decided that I would have a month’s unpaid leave and take the rest as holiday.
The NHS has since said that, as long as I produce three consecutive pay slips and save the receipts, which I haven’t done, of travel expenses incurred and parking tickets, they will do their best to refund me up to two months’ salary I think. So, in theory, I shouldn’t lose out. In practice, I’m not quite so sure as I don’t know yet.
Yeah. So in practice you’ll put this necessary paperwork together,
I have just got a letter from the practice saying that, verifying that they’re not going to pay me for a month. I’ve got an appointment next week. I’m going to see [nurse’s name], the nurse to discuss things and hopefully get it sorted. And that couldn’t be done till after the op. She said, “We can’t get it going until you’ve been through it.”