Interview HF18

Age at interview: 66

Age at diagnosis: 64

Brief Outline: Heart attack 2002. Angina and heart failure diagnosed afterwards.

Background: Retired factory manager; married with 4 children.

He gave up smoking after his heart attack.

Well I used to smoke 50 to 60 cigarettes a day, that can't be good, you know. But it never struck me that...cancer is the thing you think about when you smoke, not heart attack actually. It's cancer that you think about. And for some reason that doesn't seem to worry you. But the only, I mean when I had my heart attack, they told me to stop smoking and I did. I stopped smoking straight away because they said it gave me a 50% chance of living longer. So I thought well a 50% chance is better than no chance. I mean I've seen people in there, because there's quite a few people in the hospital who've had a heart attack at the same time sort of thing. And they were nipping out for the odd fag and I'm thinking well you know, why do it? They've told you that it gives you 50% more chance of getting over the heart attack if you don't smoke. I think to pack in smoking you've got to be frightened to death, you have, you've got to be frightened to death to pack it in!  

He was shocked and unprepared for his diagnosis of heart failure.

And I found out afterwards it was like a diseased part of my heart, not like a narrowing of the arteries or anything like that. It was a part of my heart, well when I had my angiogram they told me, the doctor came round and there was about ten of us they were angiogramming the same day. And.. a lot of people tell you it's frightening but it's not really, it's just one of those things. You need it to be done, you know what I mean? Once it's over,  it's okay, not painful. But he was telling the other people 'You need a triple by-pass' and well 'You need a stent going in to this artery', and he came to me and he said, 'We can't do anything for you'. He said, 'You've got a diseased... the back of your heart is diseased and your muscles are not working. And one of your arteries is diseased'. So he said, 'There's nothing we can do'. He said, 'The only thing that would help you would be a transplant, but we don't consider transplants for people over 60'. Now that shocked me, to be honest. You know, I just, I sat there rather numb and I couldn't think of a thing to say because he said, 'Any questions?' Now, how can I think of anything to say to him, to a chap who's just told you more or less you've got no chance of living, you know, no cure. So I was really on a down then for a couple of weeks. 

He tried using the internet but found the information too technical.

Have you looked for information on the Internet?

I tried actually, looking, yes I did try looking for a heart thing because I wanted to find out what part of my heart wasn't working but I couldn't find it.

What did you look up?

See I'm not very clever on these, I mean my grandkids can show me more on this than I, I have to get them in when I want to do anything on this. But 'heart', you know look at heart and then search and then you get all these different lists and I just, heart failure, you have got heart failure and things like that on it and I've looked at that but I can't see what part of my heart they were talking about.

And they never really told me, only technical terms and you don't really understand the technical terms, you know what I mean? They just said it's part of your heart at the back and I looked on my notes to see if I could find out what it was and it was LV.   
 

He suggests that heart failure nurses should be available everywhere.

It's just the breathlessness and you do get a lot of fluid. It's frightening after you've had a heart attack. The first few weeks of getting over the heart attack are frightening because you can't do anything, basically. I get cramp or I used to get cramp all the while and they gave me this spray and I never used to use it because I thought it was just cramp but they said, 'No, these are little angina attacks, you have to use the spray. It will help take the pressure off your heart'. What we really need is more like what I'm in now, this Community Heart Project, that needs to be all over the country really, to be honest. I know the nurse that I go to see, she's rushed off her feet. There's only two of them in [place name] and she's rushed off her feet. And she's just got, and it was like a trial thing and she had to go to [place name] and tell everyone what was happening and all this and they gave her another year's funding for something, to expand it and put five more people. Really it needs to be carried on all over the country because it's very, it's a relief just to be able to ring someone up and say, you know this is happening to me what can I do? And she's there.
 

He attended one support group meeting and found other people's experiences gave him a bit of hope.

Have you ever thought of joining a patient support group?

I went to one at the Royal. I got a letter through saying they had these meetings so I went and sat in one. They were quite good, actually, there were a lot of people, well 8 or 9 of us there who'd had heart attacks in different stages of it, you know what I mean? Some of them had already had the operation to cure it but I never saw anybody who hadn't had something done about it. I was the only one there that they couldn't do anything about, you know... so... but I never spoke much at that meeting, I just listened because it was the first one I went to. I had a cup of tea and a biscuit. 

Have you been to any more?

No.

Why is that?

I never got invited to any more. I never had a letter. You see, I don't know whether they still have them but you see, I was only more or less half way through finding out what they could do for me so I couldn't really talk about, I mean a lot of these people had had heart attacks and had bypasses done and things like that. But I was still, I was like a junior, I'd not long had my heart attack and I was still in the process of finding out what they could do for me and what treatment I could have and they didn't even know then that I couldn't, that they couldn't do anything about my heart, you know.

And was it helpful at all?

Yes, yes it was all right. It gave me a bit of hope, actually, because you know like one chap had got an allotment, mind you he said it took him forever to dig it, you know what I mean? I can imagine because I know how long it took me to dig that bit out there. But, and there was one chap who he'd had a bypass but he was only just getting over it, you know what I mean? It does take a few months to get over it, especially I think the operation in your leg is worse than the one on your heart, you know walking after that.
 

Describes how he heard the results of an angiogram.

There was ward, there's a ward you go into at the hospital. I think there were 10 or 11 of us in the morning and there was another batch coming in the afternoon for the same thing, you see. You get yourself all ready, you know. And you're laying there in the bed and they come and wheel you in one-by-one it takes half an hour this angiogram does, so really, it's like a 5-hour job and then you've got to come back and lay there for two hours before you can leave, before you can dress because there's a hole in your groin you see, and you have to wait for that to heal up, well for the blood to congeal. 

But the doctor comes round after all that with all the notes for each patient because he's examined them and decided what can be done for each patient. The chap in the next bed to me, he says [to him] 'Well you're going to need a triple by-pass'. Now I could hear this because this chap's in the next bed, you see. And there's one in that bed and there's one over there. And he says, then he goes to another one and he says, 'Look we can put a couple of stents in your heart, just widen the arteries a bit, that should be OK.' (Funnily enough my daughter's husband's father was in there at the same time as me for a heart attack. But he was waiting to have a triple by-pass. Yes, but he could have it, you see, I've seen him since.) But, and then they went to the next bed and said to the chap 'Yes, we'll put the stents into you and widen your arteries and you should be okay'.

Then he comes to me and he said 'Well, you've got a disease in the artery at the back of your heart'. He said, 'And the heart attack, that caused the heart attack but what happens is it destroys your muscle in your heart. So there's really nothing we can ''  I didn't really understand this, you see. He said, 'There's nothing we can do for it, only a transplant', he said, 'But we don't consider transplants for anyone over 60'. And that's all he said to me!  He just said, 'Is there any questions?' but I couldn't think of a thing to say, you know, who could after being told that? So I was really on a down after that.  I think I suffered from depression for quite a few days after that until I saw the nurse and the other doctor, and they put me right, you know what I mean? If he'd have come and said that, if he'd said that instead of saying there's nothing we can do for you, if he'd said, 'The only thing is a transplant but because of your age we don't do transplants but we can control it by tablets'..and if he'd said that, fair enough you know,  you think oh they can do something about it you know you're okay. But to say that they can do nothing and then leave you hanging on a limb.

He relies a great deal on his wife and family to do jobs round the house.

Oh yes, you do rely on your wife a lot, yes. I do now. I've never been one to rely on anybody as such but you do rely on your wife a lot now. And the family, actually, because the family are quite good. They're all pretty much - any jobs that want doing, you know I used to be able to everything - I only have to ask and they come and do it, they don't even think about it, they just do. No, don't you do that, we'll come and sort that out. That's how it should be, I suppose, the family. 

 

He still enjoys fishing even though it takes him time to recover from landing his catch.

No, no. I still get enjoyment out of it, yes. The same with the fishing, I mean, I go fishing and I catch carp. Now carp are strong animals, especially the ones I catch. And I had one the other day, it weighed about 6 pounds and it took me ten minutes to get it in and fifteen minutes lying on the bank recovering [laughs] You know what I mean?  But it's great that I can do it, I was happy to do it.

Well, the thing is carrying the kit [pause]. Well the chaps just come and pick the kit up, 'leave it, you just walk to your bag and we'll bring your kit round' you know. It might be only 20 or 30 yards but carrying, it's a fair weight, you know. It could be eighty pounds, ninety pounds and even if you do it two trips that means I've got to walk twice as far, and I can't walk a long way. See mainly, it's not the out of breathlessness that does me, it's the cramp that does me, walking. But once I'm there, the cramp makes me out of breath, if you know what I mean, because I'm struggling. It's a bit of both. 

He appreciates being sent test results in writing accompanied by instructions for any changes of medication dose.

I mean, I get letters every time they take a blood test, I get a letter through telling me what’s wrong with or what’s right, you know, if there’s anything wrong, it’ll tell me on this printout, the nurse sends me the printout every time and if there’s anything wrong, they’ll change my tablets to bring the levels down to what they should be. You know, it’s difficult, I mean, I don’t understand it completely you know, I have to rely on the nurse and the doctors and know that they’re doing the right thing.

Do you find it reassuring that you get that sent to you or does it worry you?

No, it doesn’t worry me. Yes, it reassures you, I suppose, because it does tell you that everything is right, you know. When I have got the one that’s been very high compared to the last one, I just ring the nurse up and say, “Well why is this?” And she will say, “Well we decided to, we’ll cut down on this tablet until that drops to below 10 or 12 or whatever it should be. And then it levels out and then we’ll take it from there.”