When I go to the transplant clinic for my routine visits it’s actually a very friendly, chatty place. It’s hugely chatty and theres always a few people – and I’m among them – who bury their heads in a magazine and don’t chat and ignore the overtures really. Because we don’t need that club right now. When you need the club it’s fantastic, it’s a very supportive, very efficient, very effective unit and part of the support is that everybody is in there together, patients, doctors, nursing staff; everybody. It’s a fantastic place when you’re ill and when you’re well you don’t want the club because that would make you ill, if you responded you’d be ill.

I learned my lesson from my father in law who is in his 80s, hes still quite a healthy man but he has got odd bits of angina and sort of a bit of hypertension. And hes told me what hes taking; and of course when he said to me ‘Oh I’m on Atenalol and I’m on this and that’, I would say ‘Oh yeah I’ve taken those, yeah I’ve taken those. I wasn’t listening to how it sounded and then he turned round and said ‘God shes got to be better than me, shes always taken everything I’ve taken’, and I thought God help me from ever discussing anything like this with anybody ever again!

I was advised to cut down on salt and I haven’t cut it out completely – but it was when I first came under the care of the renal unit, before the transplant and I struggled with that for a bit. But I did find I probably reduced our salt intake by about half by, for example, just not putting salt into vegetables when I cook them and we tend not to add salt to anything. But theres certain things I think that just aren’t worth eating if they haven’t got salt in, but I was quite surprised at how much I could reduce it it took me a while to get used to it but I did get used to it. I was told I would and eventually I did.

I was still smoking when I had heart failure but I stopped pretty much soon after that. I think actually it was one of those strange things – I was one of the lucky ones – managed to stop quite easily and quickly. I was having a general check up at the GP and I liked the GP; she was a young woman about my own age and I really liked her and clicked with her. She said in an extremely unpressurising sort of way she said ‘Oh I see you smoke, it’s probably a good idea if you didn’t really, given you history. And it was nothing more than that, that was all she said and because I liked her and valued her opinion and because she didn’t come heavy on me I just went home and stopped.

The fact of having to follow a regime of tablets, apart from these acute episodes, mostly it’s just been don’t forget to take the tablets. I think that’s no big deal, as I said before I can’t understand people saying ‘Oh it’s awful I’ve got to take 12 tablets every day. You think ‘So what? I’ve got to eat 3 meals a day – how awful, I’ve got to go to the loo’, it’s just another thing you do so I’ve never understood that view.

I very, very occasionally forget to take my medication as it tends to be built into my daily routine. I’m sure everybody does this; get up, go and get the water, take them. But very occasionally, say if something wakes you like a phone call say and you’re not treading the same little path that you always tread to the tap and then back to the tablets. If something breaks that you might forget, but then I always carry 2 or 3 days dosage with me wherever I go because you never know. Say you went out for dinner and someone said ‘Oh stay the night, don’t worry about driving home. It would be awful – I have had to do it in the past so I make sure I don’t – it would be awful to say ‘Well no I can’t because I haven’t got my tablets with me. So on the very rare occasions when I do forget I’ve always got them there.

On the odd occasion when I have forgotten them I have started to feel peculiar and that’s made me stop and think did I take them? I will start to feel headachy or anxious. They symptoms are rather vague, ill-defined things. I couldn’t say it’s specifically the hypertension because of course theres all the immuno suppression and everything as well and I can’t isolate it and say ‘Oh it’s just because I didn’t take the beta blocker’ or ‘I didn’t take the Captopril,’ or whatever it might be. But that’s what alerts me, I just don’t feel quite right and that happens around 10, half past 10 and then I think back and realise I haven’t taken them and sort it out.

I was living in Australia at the time and I had applied for a scholarship to [town] and was offered one. There was a medical attached and I was then about 24, went for the medical and was told I had high blood pressure. They took me in as an inpatient – I don’t think it was disastrously high but for a person of my age it was deemed worthy of treatment anyway. So they took me into hospital and sorted me out in Sydney and then sent me off to [town] with my little box of pills and a letter to the [hospital] as it was then. And I came under their care and have been supervised in one way or another ever since then so that’s when it was picked up.

When I came to [town] I was looked after by doctors at the [hospital], fairly successfully I think, it just ticked along. I still needed treatment and they investigated me. I’d been fully investigated in Australia, no cause was found so I was diagnosed with primary hypertension. And I chugged along at that level reasonably well controlled until the late 70s, about 77, 78 and then for no reason that I or my doctors have ever found suddenly went into an acute crisis and into heart failure and renal failure and finished up in intensive care. I was then 30 ish I’d been feeling unwell for a few weeks, I had been going routinely once every 2 months or so just to out-patients and they would monitor it. I was subsequently told that they had detected that things were on the slide at the previous out-patients but had decided to just wait and see what happened. But in fact it slid very quickly and I had a sort of crisis one night, couldn’t breath and got rushed into hospital, into intensive care. And nothing worked basically, they couldn’t get it down, all the usual techniques failed. So I was kept in for several weeks and it was just at the time that Captopril had been tested in America, but wasn’t available in Europe at all. The consultant that I was under at the [hospital] contacted the States and discovered that the Medical Research Council’s Unit, Hypertension Unit in Glasgow, at the Western Infirmary had small supplies of this to start testing it for use in Europe. So I was packed off up to Glasgow for a month and they tried it out on me, just to see if it would work, so I was the first person in Europe to have it.

I think it’s marketed here as Capoten now, but at that time it was developed it was called Captopril and it was being touted for use for moderate to extreme high blood pressure. And they’d given the MRC some to use to see how it worked on their patients to try and get it through for marketing in Europe. It was very, very dramatic – they gave me something like 61/2mgs, a half of the smallest tablet they had available and my blood pressure just plummeted. Within half an hour it was normal and it had been running at ridiculous uncontrolled levels for months by then.

So they sorted me out on that and I went home on it and I had special supplies brought in for me from the States through my consultant because it didn’t get cleared for another year or two after that. And I’m still on it actually but it’s now very, very widely available.

I have my own theory about why I got struck with it so early which is I had a period of fairly extreme anorexia in my early 20s. And I know that when the anorexia first began I had normal blood pressure because my mother began to worry about why I was suddenly getting thin and she took me to the doctor. I can remember my blood pressure, it was the first time I had ever had it taken and it was 110 on 80, so that was alright. Two or three years later I went for the medical and it had gone wrong and by then I was quite severely anorexic and I know that can damage cardiovascular systems. So that’s the only thing I’ve been able to think of. I’m not anorexic any more but you can do that sort of damage.

I have a way of dealing with it – to say chronically ill is not how I feel but to need permanent treatment. I don’t consider myself ill or an invalid but I know I do, and I’m going to need for the rest of my life some kind of treatment regime, that’s how I look at it. And in a way it’s not quite happening to me, it’s happening to someone else called [name]. Nobody at the hospital knows that I’m not called [name] by my friends and people who know me so when I go there then it’s her, it’s [name] that’s being looked after and treated and is having to waste time on this stuff. To me I’ve got better things to do with my life than sit around in clinics, sit around in hospital wards, go to Glasgow. So I’ve felt for a long time now that the real me is an observer of this and so it doesn’t get to me, in a way it doesn’t touch me. And [name] takes care of that side of it and does all that’s required, does whatever is needed and meanwhile I’m getting on – the real me – I’m getting on with the rest of my life.

As I’ve got endemic high blood pressure let’s say I reduce my salt. If was a smoker I’d be really trying to stop and I’d be stupid to be a smoker. I would try and watch my weight because all these things are known risk factors. You don’t want to exacerbate something that you know you’re susceptible to. It’s a bit like you hear this’ ‘Why bother to cut down this, that and the other, I could be run over by a bus tomorrow, what the hell. To me not taking those elementary precautions is like walking down the middle of the road and saying ‘I could be run down by a bus. You’re actually a lot safer if you get on the pavement.

I’ve relied on what I’ve been told by my doctors largely. I do feel I know a fair bit about it but I don’t want to waste time on it somehow. I’m sorted out, I’m running fine and if it goes wrong, when it goes wrong then I will address it, that’s how I tend to be about things anyway.

I’m lucky it was picked up early before it did, before it got going at a virulent level. Presumably it delayed that, as eventually it did become very damaging. I was quite mystified by it and upset partly because it could have stood in the way of me coming to [university] which I was very proud of having achieved and wanted to do. Mostly it was just the mechanics of it, I didn’t want it to stop me and get in the way so it had to be sorted out to that extent.