The most likely thing is getting a virus which attacked my heart when I was abroad. I could have had it before I went, and it got worse when I was abroad, but I’ve got no history of heart disease in the family, I don’t smoke, so they just think it was a virus and I was just unlucky.

When you were abroad were you aware of being ill or having a virus?

As I say, when I was in Hong Kong a couple of people got coughs and colds, and my husband got a cold. I just seemed to start coughing and didn’t really take a lot of notice, everybody gets coughs and colds. It’s a funny atmosphere over there, it’s very very hot, humid, but air conditioning everywhere and you go from the heat to the cold, and I just thought it was just a bug I’d picked up. But they said it had attacked my heart.

Who said that? Can you tell me a bit about that sort of diagnosis as it were?

I’ve asked my consultant at the hospital why I got this and he said, the only thing, it’s a mystery, the only thing that he can think is that the virus I caught when I was abroad. Nobody else knows. I was asked to have, I don’t know what it’s called but they put a camera into your vein, to look at my heart, but I was really nervous about having it done, and I said, ‘Would it benefit me at all?’ My consultant said, ‘No, it won’t benefit you. And if you really are nervous about having it done we won’t do it. So I didn’t have to have that. I’ve had a scan on my heart, and I’m really pleased to say the last scan, my heart’s nearly back to normal size, because what I’ve got is an enlarged heart, and it wasn’t pumping things around my body and that’s why I got all swollen up.

When… I came out of the hospital in [name] and was asked to see my… a cardiologist in my local hospital here and the local cardiomyopathy association which happened to be near to me as well, which was a great help… I was all very confused because up to this time I had really been far more involved with my husband and his illness and then suddenly the tables were turned and it was me, you know, and having to cope, and fortunately he was in a nursing home so I didn’t have that worry, or that, you know battle, trying to get him a place somewhere in a home, So that in a way was the reason we felt my condition was probably brought on, even through genetically, the genes being there, or could be through a virus, or stress or a congenital heart disease and this can be with you all your life and it can you know materialise until a major problem early in life or in later life, with me I was fortunate I had got my 60’s and then it all suddenly reared its head.

But I just put it down to stress, but when I look back and discovered my father died as a young man at 42 of heart condition maybe he had the same sort of cardiomyopathy disease, and there are four different types of cardiomyopathy, so therefore it could be genetic. And it could be that I’ve had it, but didn’t know!

I wasn’t at all well for a couple of years, sort of getting colds and feeling sort of chesty and I was at boarding school and, you know, not really’ nothing happened, you know nobody sort of took much notice. And then we went on holiday with my parents and I started to feel extremely ill, really very ill. And it was at the end of the war and I got a terribly, terribly sore throat.

Anyway, we came home but I had to walk a long way so eventually when I got home the doctor came, I was really quite ill. And so it was diagnosed as rheumatic fever with all the complications. Which does end up you know, as I learnt, with valvular heart problems. Anyway it took a long time to get over that but I did eventually, of course, sort of live a relatively normal life but I could never run again or do anything like that. But one learned to live with it and I was told never to marry, never to have children. But of course that is a long time ago, in the 1940s. But I didn’t do sport or anything which I had loved before. But I managed and then I finally left home and went to live in London, because I lived up in Derbyshire. And lived in London, ’cause I was determined to get away ’cause they were looking after me a bit too much. (I’m cutting out an awful lot…) And so I had a bed-sit and thoroughly enjoyed living in London but you know even then I used to get palpitations sometimes and daren’t tell anyone, you know and I daren’t tell my parents because they I would have been home straight away.

Anyway, so really from then, things deteriorated slowly. I was told never to have children and I lost 2 full-term babies, actually, but I did manage to have 2 children full-term and we adopted a child. What can I say, you know, life just’ when I was busy I was just exhausted I was exhausted all the time, actually. It was just one life of exhaustion but I was OK.

When I went to the cardiologist, my symptoms were being very out of breath, puffy ankles, legs, very wheezy cough. That was basically… and also they had seen a shadow on my x-ray. So they were the four and it was only when he asked me if I’d ever coughed up blood, that… you know I told him about the years previous, and he was horrified that a doctor didn’t even examine me, you know the GP.

So after I’d seen him, I used to go and see the cardiologist about every three months and when I told him I was going to get married he said, ‘Oh dear! And I suppose you want children?’ And I said that yes, I did, and he said, ‘Well I can’t stop you, but I can advise you that it would be very unwise. And he said, ‘I think you can take it if I say this to you, it won’t frighten you too much, but I have seen women die in labour with your complaint. And I said to him, ‘I’ve got to have children. I want two. And he said, ‘Well all I can say is that well look after you as best we can, but my advice is not to. Well, I’m very stubborn I’m afraid, and after wed been married about 6 months I did become pregnant. It wasn’t intentional because we decided… my husband wasn’t happy about it at all, but I went on the premise that it was my body, and that I should kind of dictate what I wanted. And the pregnancy went along quite fine until I was about 28 weeks and then I was at home, home from work and I stood up to make a cup of tea and as I stood up so I coughed, and blood just shot everywhere, all over the cooker, all over the floor, it was as though a murder had taken place! And my poor husband, he went white as a sheet, he went down to the phone, phoned the doctor, doctor came, and it was his doctor who came, and he said, ‘You shouldn’t be pregnant!’, and I said, ‘Well, I know that, but I am!. Anyway I was admitted to hospital, [name of hospital] and… I saw the cardiologist, obviously. I mean he was amazed when my husband told him how much blood I’d coughed up’ he said ‘Well, well have you in for three days observation just to see how things are. But all the time I was in there I was coughing up the blood, and after three days they decided that they would do something about the valve. (It was the valve… the mitral valve). So I had an operation when I was 7 months pregnant and I have to say that after I stayed in hospital until my son was born, this was in 1955, and I didn’t look back for quite a while. I mean I had a very easy labour, it was over quick, very quick, when he decided to come, he was a fortnight early which helped a great deal. And I went on all right for about..(well that was 1955), and I think I was all right until about 1960. And I got called back to the hospital because they were interviewing women who had had heart surgery during pregnancy. And the gynaecologist there, when she examined me, she said well, they were all sort of listening to your chest all these different chaps I don’t know where they’d come from I think other hospitals, and she said to me, ‘Is your family complete?’ And I said, ‘No, I want another child’, and she said, ‘Well, I have to tell you that your murmur is very very strong. Don’t leave it too long. So I told my husband and we kind of went in for another one there and then, and my daughter was born in 1962. But I have to say that the same thing happened about the same time as the first pregnancy. But I did manage to go through it, the labour and everything, without too much bother.

So can you tell me a bit about your heart condition?

I was born with congenital heart disease, Tetralogy of Fallot. It’s basically four problems wrong with the heart, which have been, were rectified when I was three. That was when I had my first open heart surgery. I had regular checks as far as I’m aware up until I was about 16 when I left home, got married, started my own family. Never had any intervention really from any cardiologist until I was in my early thirties. I started to feel unwell, passing out. Went to the doctor’s and said I needed a new valve replacement, which I was absolutely shocked cos I really believed that the operation I had when I was three was like going for your tonsils out. Once that was done you were fit and healthy. I had a normal life right through school, had two beautiful healthy boys.

When I was in my early thirties I had a valve replacement done, which at the time I believed I would be in hospital, valve replacement done, out of hospital and I’d be back to being my early twenties, which didn’t work. I had quite a lot of psychological problems dealing with what had happened, which has all been sorted out and I went through therapy for. And I had my pulmonary valve replaced in 2001, it’s all been very successful, I have regular checks. I normally have my heart checked at least every six months. And then in 2006 I had a pacemaker fitted. And about 8 weeks ago I’ve just had another pacemaker fitted as that was running, that had run out of battery life, so they put a new one in, a bit of an upgrade apparently.

But the point was that the heart thing, the palpitations, the arrhythmia whatever you want to call it, actually seemed to calm down, and the Sotalol that I was given was at one strength and it was doubled and then it was cut back by a bit, so eventually a level was found which seemed to work perfectly well and it sort of faded from the radar screen. As far as I was concerned the more important thing being the liver.

But the interesting thing was that it reappeared in another form in the sense [coughs] that I was told that I would have a transplant, it would be beneficial to have a transplant of my liver, and obviously one gave up drinking completely, which I did for 2 years or more. And that one of the things which they do, fantastically detailed medical examination of you before, you know it’s rather like space-men – you know absolutely everything is examined top-toe quite literally – and the heart thing came up and I declared it, and said that it hadn’t been a problem.

The point I’m trying to make is that the heart keeps creeping in as a… rather like a stage villain, if you like, in that the story is going on but every now and again this shadowy creature creeps in which is the heart. So you don’t ever throw it off. It’s there, but this time it’s becoming quite serious because the option is to have the liver transplant, the other option is to die. So the odds were not, if you like, sort of… 70/30, the odds were more like, worse than 50/50 because of the background of the heart situation, and this history of having conked out in the middle or towards the end of a small, minor operation.

But the point at issue here was firstly, was having to live with the fact that the heart is now a disruptive influence in ones future health. So in other words, the next time I have an operation once again they’re going to say, ‘Is his heart going to be able to take it?’ Equally, I suppose, if I have any form of anaesthetic, ‘Is he going to pull through?’