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Third
patient view
- (full conference transcript)
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Simon Lloyd
David Griffen: It’s now my privilege to call on Simon Lloyd. He had a career as a lecturer in agriculture, specialising in sheep husbandry, and teaching livestock skills. He took early retirement in 1997 due in part to renal failure. After 14 months of peritoneal dialysis he had a transplant in October 1998. He is now a smallholder with a small sheep flock and currently vice chairman of Tyneside KPA and also a member both of Northumberland CHC and a pilot patients’ forum. Simon is going to give us his own view on skin problems that he has encountered since being transplanted.
Simon Lloyd: Some of you may have seen me wearing a slightly different hat to do with repeat prescriptions and I wasn’t going to say that we’re currently doing a survey we’d like your help with, so I won’t. I’ve made my plug.
The hat is here for an entirely different purpose, but I want to get onto that in a minute. I want to go back a little bit. I had my transplant four years ago but prior to that a lot of my work was working with livestock on farms, because there just weren’t enough and we went out to a mix of farms with a mix of bugs. On two occasions I had ringworm on my arm. In both cases they were treated. I was concerned that that might be in my system and might erupt since‘ it hasn’t. So that’s one relief. But there was something in my system that did erupt last winter. I got a nasty case of shingles in my hair. I went to my GP who took one look and gave me a shampoo, which did absolutely nothing, and, as I was feeling very painful a few days’ later, I actually referred myself to the hospital renal doctor and they did give me acycloverin which sorted it. One of the morals is that sometimes you have to sort yourself out and not listen necessarily and insist on getting what you need.
That’s not what I’m here to tell you about, though. After my transplant, a few months later I got a wart on the back of my hand. I had an interesting session, I saw the renal consultant at the clinic and she took one look and said,‘You might have orff,’ which is an infection of sheep which causes a rather painful blister.’’ She got quite excited and took a skin sample to send away for electromicroscope examination, and so on. I knew it wasn’t because it wasn’t painful. However, I was referred to a dermatologist and she chopped it off. A beautiful job, under local anaesthetic, I couldn’t see a thing. Very impressive. And that shifted it. A few months later I got an infection, a rash, on my chest. I didn’t notice it, the itch wasn’t painful. All I noticed was little brown spots across the top of my chest. So I again reported it at clinic. They took one look and said we’re not really dermatologists. But if you press it, it disappears. Went to the dermatologist who said‘Oh yes we know what that is. It’s called sebhorric dermatitits or sebhorric warts.’ They gave me a cream, it shifted it in a week. Great.
The next thing I got was the winter before last I got a growth on my forehead, which was, exactly what you were describing, a rodent ulcer. I didn’t know what it was, all I knew was that it was a bump, and it seemed to produce a scab and if I scraped it off it carried on doing it. I saw my GP who said that was what it is and he again referred me to the dermatologist. That took 13 weeks to get around to seeing me, which you may smile at, sir, but that’s what happened, and it was duly chopped off. They found another one on my shoulder which they also chopped off‘ sorry, in the polite way it was removed surgically. They actually made me sign a form that they could do what they liked with the little bits of skin left over, which they called dog tags. It’s amazing what they have to do in hospital these days.
Now those were really the main things I’ve had. The only briefing I got about those things after my transplant was zero. The briefing I got was‘ keep covered in the sun. Hence the hat‘ I wear this hat, and when I go out in the sun I wear long sleeves. And believe you me, shearing in the sun in long sleeves is no joke. You don’t half sweat. I was used to shearing with a very loose singlet.
Now I went to the transplant games last year‘ and that was an education in itself‘ because in the goody bag was one of these [produces a short-sleeved T-shirt]. Zero protection for your arms, and I bet you can see through it if you look. And do you know, the year following I got another one, here it is [produces another short sleeved T-shirt]. Just about as good to protect your skin. What a marvellous idea!’ But I did get something else this time. It was something that was a bit better. It was one of these. [produced a hat]. It does protect my ears and my nose and it looks quite good. (Laughter) You may laugh, I couldn’t care less. I think this is better. Shall I tell you something?’ Nobody, but nobody, wore these things, until the Sunday, when we had the athletics in Saffron Lane and it was hot. It was a beautiful day and the sun was coming down and there we all were in our T-shirts and suddenly‘ Wyeth had a surplus of these caps‘ and they all disappeared. My team all wore them when they had the parade. And they did them up in fancy dress and Wyeth thought it was great. Well, all right, extra large is a bit big for some people but it fits me -tells you about my head.
But I have a serious point to make. At both of those games I was one of the few people who wore a hat at all, certainly one of the few at the games in Leeds who wore a wide brimmed hat.
Our transplant games are appalling!’ We totally ignore the advice we are given about skin cancer. Seriously. Those of you who have been to transplant games, you know what I’m talking about. This year‘ I give Belfast their due‘ all their team had a wide-brimmed hat on, and they looked good. We ignore it. I will give Leeds their due. I went in for canoeing, and they turned up with a box of high factor discount sun cream and because I was out canoeing in the middle of the lake with no protection I put it on in plenty. The fact that the water was swimming with umpteen ducks and things and the infection, if you fell in, was going to be something else, what you were going to drink I hate to think. I didn’t fall in. But that’s a separate issue.
Now, when I was on CAPD I went to a meeting called the Great Exchange not far from here at Warwick University. There was a transplant surgeon there who told us that the after-care was to give all his patients in their unit a skin check all over once a year. I’ve discussed this with our committee, and we would like to see something like that done. We would like to see at our clinics somebody in the clinic, maybe a highly trained nurse, who can identify these things and deal with them there and then and get us to the appropriate person. Unfortunately, our renal specialists know very little about dermatology. I’m delighted at your talk, sir, because it’s the first time I’ve heard somebody begin to say it’s serious. I knew it was serious because I spent a year in Australia and they had these healthcare schemes impressing on their people the need to cover up. We don’t take them seriously. So I’m wearing a hat. I happen to believe we’ve got to take care of ourselves. Thank you.
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