Maggie - Interview 36

Age at interview: 66

Brief Outline: Maggie donated a kidney to an anonymous recipient in 2007, when she was 62. She recovered well and is keen to raise awareness of living kidney donation. She believes that the NHS should cover the costs incurred by altruistic donors.

Background: Maggie is married and has two adult children. She is a retired teacher.Ethnic background / nationality' White British.

More about me...

Around 2005, Maggie had a conversation with friends about living kidney donation. A friend of a friend had received a kidney from his son. Now, however, it had rejected and this man was facing the prospect of life on dialysis. Maggie started wondering about kidney donation and the possibility of donating to someone outside the family.

Maggie discussed living kidney donation with her husband and two adult daughters as something she would like to consider doing. After initial questions about risk to her own health, they were all supportive.

After seeing her GP, Maggie was referred to a hospital with a transplant unit. She heard nothing for several weeks and asked her GP for another referral. She later received a call from a specialist nurse [transplant co-ordinator], who Maggie said was quite rude and suggested she forget the whole idea. Non-directed (anonymous) living kidney donation was not legal in the UK at this time.

Maggie decided to talk to one of her neighbours, a professor in the health field. He put her in touch with a surgeon at another hospital, who then set up all the physiological and psychological tests that Maggie needed to have.

Maggie was surprised at the reaction of some of her friends, who felt that what she was doing was wrong. Other friends, though, were supportive and understanding.

Maggie had her surgery at the end of November 2007, aged 62, shortly after anonymous living kidney donation became legal in the UK. Before going ahead, she had some re-tests as there had been a gap between her first set of tests and non-directed kidney donation becoming legal.

The operation went well and Maggie was discharged from hospital a few days later with paracetamol. Through her GP, she got stronger pain killers and, over a period of seven weeks, recovered well. She said progress was slow at first. She had bad indigestion but experienced no serious complications.

Maggie went back to work seven weeks after surgery, into a stressful teaching job, and felt she’d needed more time to recover mentally. She took a further seven weeks off work for stress and, shortly afterwards, retired. Maggie is now healthy and well and has annual check-ups through her GP. 

  
Maggie felt strongly that the costs incurred by anonymous donors should be covered by the NHS, which she believed would save a lot of money in the long-run when a patient no longer needed dialysis. Before agreeing to donate, she asked that the NHS pay for her sick leave.

Maggie was one of the first few people in the UK to donate a kidney to an anonymous recipient. Before and after surgery, her story attracted media attention. To raise awareness of living kidney donation, Maggie took part in radio, television and newspaper interviews. She continues to raise awareness of kidney donation and has recently been keen to talk to religious faith leaders.
 

Maggie's family were surprised at first but, when they knew the risk to her health was low, they...

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.
 

Some friends were supportive but two close friends were disapproving. Maggie wondered why this...

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.
 

Maggie was told to forget about anonymous donation because it wasn't legal in the UK. She went...

I went to my GP, who referred me to [hospital name], where there’s a transplant unit. Heard nothing for some weeks. Asked for another referral from the GP. And then I had a phone call from a co-ordinator nurse [specialist nurse], who wasn’t very pleasant to me on the phone. Spoke to me as if she thought I had some mental disorder, and effectively told me to forget about it.

So then I thought, “I know, I’ll go over the road to Professor [name].” He’s a neighbour whom I know quite well. See what he thinks, if he can suggest any way forward. I’ve had the brush off from [the hospital]. So he said that he knew a surgeon, a transplant surgeon in [hospital name, doctor’s name], who he thought would take me seriously.

He put me in touch. I went over to [hospital and doctor’s name] and he was very welcoming and nice. He set me up with a battery of tests, physical and psychological. But, at that time, it wasn’t legally permissible for me to give a kidney.

So I bided my time. Couldn’t do much else. And then [doctor’s name] retired. But he said, “I’ll forward all your stuff to a man in [another doctor] who started  keyhole surgery.” And that was a relief, because I knew that [the first doctor] didn’t do keyhole and the large operation is a huge incision, sawing through ribs. And I was prepared to do it, but quite relieved that something a bit more comfortable might be on offer.
 
So then I waited. The law changed. He gave me a date. I had about three months to get ready for this date, which was the end of November 2007. And I had to have more tests in [hospital name] just to make sure that my body and mind hadn’t changed with the passage of time.
 

In the first three weeks of recovery, Maggie had some nausea, indigestion and the sensation of an...

I had quite a lot of nausea as well, which was attributed to the stronger pain relief. And so nausea, while not life threatening, is something else you can do without. So –between nausea, bad smell in my head, indigestion, not having a good night’s sleep – my post-operative recovery, while not intolerable, was something that I was glad to eventually get through. And I was back at work.

I think that bad period only lasted three or four weeks, or less. And then I was just getting my strength back for a return to work. And I needed my strength because I was working in a unit with children who’d been excluded from school, and they’re a rough lot. You know, you can get shoved or nutted even, as I some... So it’s a rough environment.

And at that time, recovering from home, especially those first three to four weeks, was there anybody at home?

Yes, my husband works at home, which was ideal. And I had visits from friends. People bringing food, you know, very, very nice.
 

Maggie is glad she donated a kidney. She encourages other people to think about doing it. It's...

By and large I would say, well certainly I would completely say that you have a sense of satisfaction for doing it. Not every minute of the day, I mean I hardly ever think about it now. But when I do think about it, I think “Oh good.” You know, someone’s got a life back And my life hasn’t had much of a dent as a consequence. So I’m glad, I’m glad I did. And I certainly would encourage anybody else to do so.

Maggie felt that her time off teaching should be covered by the National Health Service. She was...

Now another thing which I think is very important is who funds the time you take off work. And I said in [hospital name], “I want the recipients PCT [National Health Service] to fund this because I’m going to have to have time off teaching. I’m not going to approach [place name] education. Why should they? There’s nothing in it for them, but there is something in it for the health service because the savings in dialysis costs are huge. Everybody off dialysis is a tremendous saving. Years and years of savings, apart from the first year when the cost of surgery and post-op care I think equals the cost of a year’s dialysis. But after that, it’s gain for the health authority. 

And I said, “I’m determined not to approach [place name] education authority. I’m not going to take time off unpaid. I can’t afford to, and please will you sort this out?” And I said it quite bluntly. “No funding for my supply teacher cover, no kidney. You deal with that.”

And I think it was unusual for somebody to make that sort of demand because I think, in a family situation, there’s such an emotional pressure on families to save somebody’s life, they say, “Just take my kidney. I don’t care if I mortgage my house, you know, just save my child’s life,” or my husband, or whatever it is. But I wasn’t in that position. I was thinking about myself and other anonymous donors, who I think have a right to have their expenses paid. And actually it comes on the NHS website that expenses should be paid by the health authority. But I put it rather bluntly, “No funding for my supply teacher cover, no kidney.” And funding after evidently some negotiations was forthcoming.

From?

 From the recipient, who I think was a man in [place name]. That was let slip and I think perhaps it shouldn’t have been. That hardly matters, and I don’t know him. His PCT coughed up for my supply teacher cover.

Yes. So did you get reimbursed for your travel costs to and from?

Yes. I hadn’t been very sharp really with things like how much it cost to go by car several times or by train. I hadn’t kept my train tickets but we made a list of, I can’t remember what it came to. It didn’t come to thousands certainly, but I think it came to low hundreds of what my travelling expenses had been. And I hadn’t had to take time off school. No that’s not true. I did take one day off school, for a day’s tests that were unavoidable. But otherwise, going to [hospital name] I managed after school for an afternoon or during half term or school holidays. So I managed to work that into holiday time.

 But I’d like anybody listening to this, who’s considering being an anonymous [donor], to make sure that they do everything they can. PCT's aren’t going to exist anymore, but that the National Health pays their expenses because there’s no other body that should.
 

A conversation over dinner led Maggie to think about becoming a donor. She'd have been grateful...

About five years ago, maybe five and a half because it was Autumn, I was at somebody’s dinner table having dinner with some friends. My husband was there. And the subject of a friend, whom I didn’t know but have since become friendly with, a man who’s now in his late sixties who had kidney failure. And had an organ from his brother, which had gone wrong after a few years. And he was now back on dialysis, and blind and had diabetes.

The subject of this person was raised. And we chatted about it. People were saying how very sad it was. And how, at his age, and Australian, living in this country, perhaps he wasn’t going to get much priority in terms of a second transplant, and that he was pretty desperate.

And then I thought, well I wonder, because I didn’t know whether people could give anonymously, “I wonder if you couldn’t get a kidney from any well-wisher?” And then I thought, “Well, me for example?” I thought if I were in his position, obviously I’d be very pleased if somebody, a friend or somebody unknown, were to offer me a kidney.

So then I said, “I think I’ll offer a kidney, either to [friend’s name],” this Australian, or anybody else. So my husband looked a bit surprised, and we talked about it a bit informally over the table, perhaps with a few jokes. And then later, back in [place name], talked about it more seriously. And I asked my two children, who were then in their early twenties or mid-twenties, what they thought about it. And after the surprise they said, “Yes, of course, you must. You do that if you think that’s a good idea and if it turns out that the risks are low to your own health.”