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Patient Presentation 3 - (full conference transcript)
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Sue
Lyon
I would like to thank you for the opportunity of talking about myself, it is always hard to pass off. I must say it feels very odd to be standing here instead of down at the front scribbling away, which is what I normally do as a journalist.
I work as a freelance medical journalist writing in general for publications, which are normally read by doctors. Most of this involves, I have to say, sitting at the screen of my Mackintosh, but it also involves quite a lot of travelling and going to meetings. It's always interesting, and sometimes it can be extremely exciting when you're at a big medical meeting and a clinical trial is being announced, and you've got to file by a certain deadline. So it's a very interesting job. I'm certainly qualified to talk at this meeting as regards my experience of kidney failure.
I was diagnosed in 1977, so since my last birthday, I've had more then half my life with kidney failure. I spent nine years on home haemodialysis, and I'm sure some people in the room will be rather surprised that I spent nine years on dialysis, and what's more it was three times a week, for eight hours dialysing overnight. But in 1977, home haemodialysis was a treatment of choice. There was no ciclosporin, and having spent a month in hospital before they decided what they were going to do to me, it was fairly obvious that not only did people at my age get large faces and crumbling bones with steroids but they also died, so I thought I don't want any of that so I'll go on home dialysis.
Home dialysis I actually thought was fine and I very much welcome the NICE report, which suggests that patients ought to be given the choice to do this if they want to. It enabled me to carry on at my job in publishing, where it was just general book publishing. I moved on a couple of times, got promoted, and then in the 1980's, ciclosporin came along, and I could see that some old stagers like myself were going off and having transplants and were doing fine, so I thought, well. maybe not yet, and then I developed an extremely painful bladder condition which decided for me, and when you've got a bladder condition and you've got 100ml of urine going through you every day, it's terribly hard to get rid of it. So I was six months on the waiting list at Guy's, and then had a kidney, which is still going strong, in 1986.
But I must say, when I had the invitation to speak here I did rather hesitate. First of all because, as a journalist, knowing journalists' reputation, and not just because of the goings on in the Hutton inquiry, I did think that maybe people would think, well, being a journalist you haven't achieved anything, it's slightly better then being an estate agent, but not that much. And then I thought well I'm actually coming to talk to a room full of achievers because your still here despite what the NHS, and the doctors, and so on have thrown at you over the years, you're actually still alive to tell the tale. And also what I didn't want to do was to talk about the negatives, if you like, the in spite ofs, because I think there's quite enough of that anyway. I think people talk about the negatives of renal failure, for very good reasons, but what it does is that it turns kidney patients, sometimes, into passive victims, which clearly, given the stroppyness in the audience, is not true at all.
I really wanted to talk about the positives of renal failure, and the first positive is that if I hadn't have had kidney failure, I wouldn't have met my partner, who's asleep in the front row, who is also a kidney patient. In fact, you could say the perfect couple. We have four kidneys between us. He has one and I have three. Also I have met some fantastic people. Both health professionals, and patients, including people from the National Kidney Federation, but also people from Guy's, and their families. I certainly wouldn't have that experience without being on renal failure.
But perhaps what has meant more to me apart from my partner, of course, is my job, it's certainly got me my job. In 1990, after 10 years at the same company, they obviously decided they had to get rid of me so they closed the company, and I was redundant. And I saw a job advertising an editorship of a magazine for GP's, general practitioners, I went along and I got it. And I was actually told afterwards, that the reason I got it, against very strong competition, was because of my 'intimate knowledge of medicine and the National Health Service.' And I have to say that having kidney failure, and having had dialysis and a transplant, is still helpful in my job. I've used it shamelessly to get interviews, and pick up the phone and ring people up. I've got lots of contacts, and I must say Doctor Talbot has gone in my book, and it certainly helps when I have to interview patients. Because sometimes you have to interview patients, and it really helps to be able to think 'yes, well I know what it's like to have a chronic disease', and I know what it's like to have to put up with something like that.
Finally it has also got me a number of jobs, I have to say, and it's certainly boosted my income and my earnings, and I don't suppose there are many people in the room who can say that. I think in the end, what I can say is, I wouldn't be the person I am today without kidney failure. Now there are some good points and some bad points. It's a bit like marriage really, for better or worse. Sometimes you find that it's worse, but I think that in this instance it has generally been for the better.
Thanks for listening.
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