Interview HF14

Age at interview: 56

Age at diagnosis: 53

Brief Outline: Quadruple heart bypass 1999. Complications followed surgery. Heart failure diagnosed 2000.

Background: Retired lecturer; married with 2 children.

The term 'heart failure' was too general for him to grasp.

Heart failure. You see, if somebody says you've got a lump, a cancerous lump or a tumour you know that you physically have got a cancer and it's in your lung or it's wherever it is, and it can easily be cut out or it can't. Heart failure is a wee bit more hazy, it's not a definite. What causes heart failure? Is it because I've got two duff walls in my heart? Is it the leaky valve? What is it? Is it, was it, was it the blocked?  Is it a whole... you know? So its a collective title 'heart failure', whereas that doesn't really worry me but its not as specific as some illnesses. I think that's it. Heart failure can cover a lot of things and sometimes its not too serious, sometimes its very serious. 

Describes how smoking affected doctors trying to make a diagnosis.

Well I also smoked a pipe, alternated between cigars and pipe for, since I was 16.  When I... that became an issue I stopped smoking, but I didn't, it didn't help or anything, I didn't feel any better. Uh, I think... I think the... sad thing about anyone who suffers any of these complaints, is when they first see a doctor, maybe its necessary, but I always think its an excuse, 'Do you smoke?', and if you say 'Yes' then that gets blamed for everything. And its wrong, that's wrong.

Either, they couldn't decide whether, it was in the sac between, couldn't decide whether it was between my heart and my lung, and they couldn't decide what sac it was in. So it was a fairly unusual... diagnosis in so much that I was surrounded by young doctors etcetera who listened to it because although they'd read about it, nobody'd heard of it. To me it sounded like bubbling coffee every time I breathed, but to them it sounded like two bits of leather rubbing together. I was hearing a different sound to what they were hearing.

So I had 15 days in hospital with that, came out, went back to work...things seemed to be fine, got to Christmas of '91, and just after Christmas returned to college and was finding that I was extremely breathless. Any time on my feet caused me breathlessness, I had to climb stairs and it became a real hazard to me. I couldn't sleep at night at all, tried everything, tried different positions, ended up sleeping in this chair for several weeks and finally I slept at the dining room table sitting up. Couldn't get any sleep in any respect. 

Wife eventually forced me to go to the doctor's. I went to one doctor who said to me I had to realise I did have a problem with my heart, not much you can do about it blah, blah, blah. Came home, spent another several days in distress, decided to go to another doctor in the practice who gave me much the same story as the first one had given me. Sent me home. All this time I was gradually getting worse. We decided to go to the third doctor in the practice who is supposed to be a specialist in heart. Went in, spoke to him, not congenial at all, not sympathetic. Asked if I smoked, I said, 'No, but I do like a cigar occasionally.' told me that was the problem, I had emphysema, I would just have to learn to live with it and gave me a nasal spray.

He has experienced breast enlargement as a side-effect of his drugs.

But the one side effect that is mentioned in all these things that I have to take is it enlarges men's breasts! Bloody massive up here! It couldn't do something great or make me more virile or something like that, no it has to give me breasts! My wife who has got no breasts would love to take it but it doesn't work in women so they must get some other kind of medicine.

I thought 'Christ alive! The last thing I want is a pair of tits'! God love a duck!
 

His by-pass surgery didn't make him feel any better.

I get slightly annoyed, though I'm happy for other people who get bypass surgery and feel wonderful afterwards, I think it was just, I was just treated under the assumption that I've had the surgery and I was gonna be fully fit, fully operative and so interestingly at that point stopped, because that was supposed to be corrective. But unfortunately there was more damage done to my heart than just replacing the, the veins, the arteries..I don't know how do you say, it didn't enhance what I've got in any way. It remedied one part of my problem, and I've now got the heart failure problem. Its not difficult to live with now, its annoying its restrictive, at first it was terrifying when the limitations of what you could and couldn't do was brought home to you. 

But now although I've learned that I've just got to live with this its not going to get any better. The medicine that I'm on, the treatment with medicine, is not going to cure, it will prevent hopefully, any further damage, or will slow down further damage, it won't cure it, and I'm all right with that, because I could be an awful lot worse off than what I am, and it has been explained to me, by the powers that be, that if it does get worse, what the position is gonna be.

'when the surgeon cut me open he would have said 'What the hell have we got here?', because it must have looked like a bundle of mush!  But nobody told me that, nobody..if it was on records its never been explained that I was setting out thinking I'd been almost cured by bypass surgery, only to find it wasn't so.
 

He usually prefers to go to hospital to see his heart failure nurse.

Yes, well he does come out yes and recently because I complained because I'm stuck in too often and go and see him. Obviously if I wasn't well enough I wouldn't go, but it gives me an excuse for what should usually be a 5 minute drive and maybe a half hour, and I'll get half hour, I'll get longer if I need to be, consultation. It takes me a wee while longer by the time I walk places and go upstairs. It's almost like an outing for me to go and see him, so I prefer to go up to hospital and see him. It kind of gives me something to do.

But he'll come here yes. I had very good treatment at first, not that his treatment has lessened any, but the degree... because I have been controlled, or it seems that my illness has been controlled, I see less of him than I did. I would still like to see more of him, but understandably... the resources don't allow that, because I think he's only one of two and he's got so many patients, that I can only see him when and if. 

He feels his heart failure nurse explains things to him in depth.

I do see my cardiac nurse, the good thing about that is I do I've got a telephone number, I can be in contact any time during the day, and if I've got a problem, I can explain my problem to him and he will come back to me in real terms of what its about, and explain to me what I understand and... really, it can be in-depth if you like. Because, but it's relative to the heart my problems, whereas doctors have only got a glib understanding of what's going on, they've got what's in the books, but they've got no experiences to rely on. Where [nurse] will have picked up from, my cardiac nurse will have picked up from other patients, things like as I said earlier 'mother's remedies', things that the medical profession don't have written in stone but which are relevant and seen to be relevant. Uh, it's a very reassuring.
 

He doesn't like to call his heart failure nurse at anti-social hours.

There are limits, its only office. I have got a mobile number but I don't know if it would be..its never been stressed or stated that I should phone at any time so I don't know if I would be abusing the service as such. Because maybe like everyone else... he's not a doctor, when it comes 6 o'clock at night he switches off. He's got a family life, and I've got... anyway so if I'm in real desperate straits I could phone him, but I have been very lucky with emergency services as well. If there is a problem and obviously I'm not the one that phones its my wife, she quite rightly explains the situation then they know... they come quickly.

Oh I think there's times that I, I'm..quite passive with my illness, I will accept it and hang on and hold back. And I said I would never never do that but I do realise that... although things seem very bad for me at times, they're not as bad as what I'm assuming. I know that, I realise that they are part of the illness. And I also realise that I've got all the medication I can get for this, so unless its a drastic event or happening or uh, I should be OK. I should get through to the morning, but I know I can always get the emergency service; I have always had that. It would be great to think there was somebody on call, not in their bed sleeping when you phone them, but sitting at a desk or something, who could serve the same purpose. But that's too much to expect because you can't get a doctor never mind get a specialist.

He very much regrets not being able to produce shows anymore.

I have people who come in and I go out with my wife, she's still choreographing for certain amateur clubs so I'm still on the circuit. But, where I was involved in the past I'm now known as [Wife]'s driver or the guy that puts the knobs down on the tape recorder. Not, I'm not involved at all and I do, I do feel isolated, I feel as it that's all gone. I think there's, I could still do what I did in the past which is produce, people say well there's a stress involved in that but it's a good stress, it's a different stress, it's a buzz, it's an adrenalin, it's a lift. But I, whether people are frightened to say can I take a chance, he may pop his clogs half way through a show! I don't know but I do, I do miss that terribly. I miss my work in so much as I miss being with people. I don't miss my job, that's.. for fools and idiots, you can keep that but I miss the company I had. I feel a day's a very long time here. 

I go out with people, I don't go by myself.  And cheap seats are no use anymore because they're top of the house and I can't get upstairs and the theatres don't have lifts. So... but I love the theatre - I was at the theatre last night - be it a community theatre or a wee small town hall, I like the theatre but that's the only real pleasure I've got. 

And there's no drive, I mean I have sent away for libs, I still read shows, but that's just to pass my time, I can't do anything with it, whereas if I was doing a show I was always planning, there was lighting, there was costumes, there was sets, it takes up a lot of time, too much of my time in the past I don't know. But it, there's a hole, there's a big hole there that I can't fill at this moment, I can't get myself motivated nor am I allowed to do anything so that's, its crazy.