Interview HF06

Age at interview: 68

Age at diagnosis: 48

Brief Outline: 1952 mitral stenosis. 2 valveotomies. Tricuspid and aortic valves replaced. Atrial fibrillation.

Background: Retired secretary; married with 2 children.

She was determined to have children despite having heart valve disease.

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 we'll look after you as best we can, but my advice is not to'.  Well, I'm very stubborn I'm afraid, and after we'd 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, we'll 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.  

She is cautious about taking any other drug that might affect her warfarin levels.

I take digoxin, amiodarone, frusemide, isosorbide mononitrate, spironolactone, lisinopril and warfarin. And iron because of the warfarin and because I'm still bleeding in the gut somewhere, in the colon, and they can't do anything about it. I'm on a very high dose of iron to keep my haemoglobin up.

Not really, I've not really noticed any side-effects other than those. But I do, if I go to the chemist for anything, then I always tell them what drugs I'm on and they're pretty good. You know, they sort of look it up in a book. And I won't take anything unless, if it interferes with warfarin, then I don't take it, you know,  I've had a period of not being able to sleep and I thought I'd try Valerian, the complementary medicine, and I found that that interfered with warfarin. It's a bit of a balance actually, the whole rigmarole of the drugs, but you know, as I say, it's just second nature to me, I just take them. In fact my husband brings my coffee up in the morning and before I even lift it I've got my pills out, you know. 

She persuaded her surgeon to operate on her and felt her quality of life improved.

And I was all right until 1996, and we'd been to Ireland for a holiday. Didn't feel well in Ireland, very congested around the liver area, very out of breath, my legs were puffy. But anyway we toured, not doing a great deal of walking, mostly in the car, and came home on the Tuesday. And on the Friday my husband had a committee meeting here which hadn't been planned, it was going to be a somebody else's house. And just a good job that he was here because I collapsed and got rushed into hospital, spent 7 weeks in there because, you know, having 5 operations is a bit dicey as you can well imagine.  And my cardiologist only wanted me to see one surgeon. He said, 'He may not want to do but I think it's worth going for, how you do feel?' And I said, 'Well I don't want to be like this for what days I've got left' because I couldn't walk, I couldn't do anything. And I finally got admitted to hospital in London and the surgeon there looked at my notes and he said, 'Definitely not, you've had far too many operations'. And I said to him 'oh dear' and he said, 'You surely don't want me to operate on you?' And I said, 'I don't want what time I've got left being like this because, you know, it's no good to me at all'.  

By this time I'd developed atrial fibrillation as well which, obviously... could be quite dangerous. And he said, 'Well I'm not going to give you an answer now, I'll have to go away and really think about it'. And I did find out later that he phoned my cardiologist at our hospital and asked him just how I active I was. And he came back at the end of the day and said he'd do it. And I felt wonderful; I couldn't believe the change.

The last one, the surgeon fitted an artificial, a metal valve, a Starr-Edwards valve it's called. And I have to say that it's absolutely brilliant, absolutely. The first thing he said to me when he saw me after I'd had it was 'amazing'. He just stood at the bottom of my bed and said 'amazing, absolutely amazing'.  

And this was the surgeon who'd had to have time to think about whether he was going to operate?

Yes, yes. And then, as I say, the latest one was having a pace-maker fitted and there again, it has sort of increased my quality a bit but I still can't do a lot of the things that I'd like to do. You know, we have to think of where we're going or what we're doing and then my husband likes me only to do one thing a day. And then I know I'm going to be all right but if I try to do too many things then by the end of the day I'm out of breath. I don't sleep very well because of it. But apart from that, you know, I just feel that I'm lucky to still be taking a lung full of air as I've always tried to be very positive.

She describes the rehabilitation programme at her hospital.

And we're fortunate enough at our hospital to have a cardiac rehab department where patients go for 7 weeks. There's 2 sessions a week, 14 sessions in all. 7 sessions in all but it's divided into 14 different sections and everybody who comes away from that has a handout, details of all sort of things, you know, lifestyles and risks, health risks. It's a long time since I've been so I don't know quite what they do now but when I used to help out there we even used to have a bread-making morning, which was great fun because not only was it getting you motivated but it was social as well. That was very good. But they do an hour's exercise and then an hour lecture and as I say, everybody that comes out from a lecture has always got a handout. 
 

She felt that her consultant was particularly accessible because he was involved in a support group that she attended.

But because of all the medication I take, it has interfered with my kidneys, so I keep having to take more diuretic and then less. And we can’t quite kind of get it stable, and um over the last fortnight – three weeks - I did start to go into heart failure again. But I’ve got a lovely surgeon, cardiologist, (he’s actually joint president of our group) and he’s always said to me, ‘If ever you don’t feel well, please ring up and come in and see me’. And he also, he’s given me permission to go on to the Coronary Care Unit and talk to patients from a patient’s point of view and to tell them about the support group. And I just happened to be there, and I felt so dreadful that I thought I will go and see if he’s around, and I went into his secretary and she said, ‘He hasn’t got a clinic but he is physician of the week’, so I said, ‘Well don’t worry him’, so she said, ‘No, I’ll get him’, and she found him and he came and he saw me, and we diced around with the diuretics. And it seemed to, over about 5 days, it seemed to abate a bit. 

She weighs herself daily and increases her dose of diuretic if she has gained weight.

I’m very lucky because my cardiologist, he says that you know sometimes more about these things because you’re so used to it, you’ve got carte blanche to do what you feel is right. And this is the situation I’m in with the diuretics. At the moment, you know, I sort of increase and I have to weigh myself every day. And if I weigh myself and my weight goes up then I take another half of diuretic. If it comes down then I go back to my normal dose. But I kind of sort of dot all over the place with it and he’s happy with that.