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Heart attack

Getting Information about heart attacks

Having a heart attack is one of the things people most fear. When it actually happens to you, the fear becomes a reality. Knowing that it will be explained to you clearly, when you ask about your condition, the tests and treatments and what you can expect to happen, can help you to relax and cope better during your recovery. As one of the men interviewed said, “it is so important if you truly understand what's wrong with you. At 3 o'clock in the morning when you're having a bad time, you can deal with that far easier than if it's the unknown”.

Some said that they were given plenty of useful information by the cardiac care team. One man explained that his consultant gave him information which helped him to take control and know that he was doing all he could to prevent another heart attack.

 

The cardiac care team gave her plenty of useful information.

The cardiac care team gave her plenty of useful information.

Age at interview: 57
Sex: Female
Age at diagnosis: 53
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So what were the good things, what happened when you got into coronary care?

They explained, as soon as I was there they explained to me I was going to be tearful, it's a big thing, and they explained all my feelings I was going to have. I'm going to do a lot of crying and they explained that they're going to put this drug in me to get rid of the clot and everything, they just explained every inch of the way what was happening and how I was going to feel.  

And they was right, everything they said, they was right and they was there, I mean in the night when I was frightened, they was standing at the side of my bed in the middle of night talking to me for an hour or two. They was absolutely brilliant, they was there answering any question.

 

Information from his consultant helped him to take control during his recovery.

Information from his consultant helped him to take control during his recovery.

Age at interview: 46
Sex: Male
Age at diagnosis: 42
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So he sat down and he sat down with us for nearly an hour talking about diet and lifestyle, exercise, sort of doing things gradually, but mainly the fact that there's no reason why I couldn't get back to as normal life as possible. And we talked a lot about diet and these were obviously his opinions but he was talking about, we were talking about vitamins and he gave me a long list of vitamins that he recommended. 

And he said, "To be honest, scientifically nobody really knows whether it does any good but they seem to," and he said, "and they won't do you any harm." And so I've been taking those ever since. 

He explained that I'd be on medication, on aspirin for blood thinning and he said, "Everybody should take a low dose of aspirin every day," he said, "it just seems to do so much good for so many things." And some statins to keep cholesterol low, even though mine wasn't high at all, but he just said, the lower the better. 

And ramipril which if I remember rightly does something to do with making the blood, making the blood easier to pump, I'm not quite sure what. I used to know but as the years have gone by, I'm not so well up on the clinical side of it.  

But he was very realistic because he was talking about, try and steer clear of red meat. Eat as much vegetarian as you can and he was, he said, 'These aren't the only, this isn't the only advice, this is just my advice.' 

But he very much talked about taking control, that you can do this, you can do that. You can stop eating red meat, you can stop smoking. You can start walking as soon as we tell you to, to build up, you can join the gym, you can look at what other foods are healthy. It was all very positive about taking control and sort of getting your life back.  

I think especially in the first year because you really are doing absolutely everything you're told to, everything the consultant said to do and more. Everything you've read because it's your way of fighting back. 

And you pick up every leaflet about heart attacks and look up things on the Internet about angiogram's and stents and, but that's like empowerment, it means that you know this heart attack struck you down but now you're going to do something about stopping having another one.  

Others who we talked to found it difficult to get information from doctors. They weren't forthcoming and they had to ask questions. Many said it had been easier to get information from the cardiac nurses. One man admits that it could be difficult for doctors to judge how much information any one person really wants, which may be why they hold back unless they are asked.

 

Admits that it can be difficult for doctors to find the right amount of information to give.

Admits that it can be difficult for doctors to find the right amount of information to give.

Age at interview: 63
Sex: Male
Age at diagnosis: 40
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It must be a very difficult job for either surgeon or nursing staff to find the right level to pitch the information at, because everybody's different. In the  'cath' labs where they actually do all these insertions, do all the fancy work with the electrician [laughs], it, I was fascinated to watch it all on the screen and yet there were people who were in the same ward as I was, it was a little four-bedded ward, who asked for their eyes covering because they didn't want to know. 

That must make life very difficult, very difficult. In fact I have suggested to some of the professionals who are on the support group with us, I was wondering if it was possible to form some, almost like a score sheet. Say six levels of information and either the doctor or the nurse or whoever, will tick one of those boxes to say which level of information it would be better to supply to this particular patient. Whether that's possible I don't know yet.  

But initially the amount of information that the surgeon was able to give or did give was quite limited. I found out since and I've learnt since, that was because they don't know what level of information you are comfortable with. 

People wanted to know which symptoms to expect so that they didn't have to worry about them. One man felt that his recovery would have been easier if he had been given more information in hospital. Another young woman believed that if she had received more information from her doctors, she would have worried less when she came home from hospital.

 

He felt that his recovery would have been easier if he had been given more information in hospital.

He felt that his recovery would have been easier if he had been given more information in hospital.

Age at interview: 67
Sex: Male
Age at diagnosis: 65
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But there was nothing there that told you, well, there might be times that you will feel this or you might, even after you've had the stents put in, you would feel little twinges and all this sort of thing. 

But there was nothing so therefore, you're lying there or you're, even when I was at home and, as I say, getting these panic attacks, you're actually lying there and you didn't know whether this was what should be happening or, you know. And that's why the panic attacks get worse really. 

And that's where it's wrong I think because I think it would help a lot of people to get better quicker if they were given the right information in the first place. Not only that, it would also help the families because if your families are happier about what's going on, you'll be happier about what's going on.  

 

She would have worried less if her doctors had given her more information.

She would have worried less if her doctors had given her more information.

Age at interview: 37
Sex: Female
Age at diagnosis: 36
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Yeah, you had to push for any information that you want, really. It's not just, they're not just forthcoming. They say, if they just say, 'right, this is what's happened, this is what we're going to do,' basically that's it. 

I know the doctors are busy, you know, they've got, hundreds of people to see and lots of clinics to run and everything but, when you're there, you want to be their number one and you're not bothered about the person they've got to go and see in the next ward. 

The only thing you're interested in is you and I think the more that you're told and the more, the more that you understand, the better you feel about it. And then you're not just left in the dark and wondering and worrying 

A few felt that information was lacking during the 4-6 week period between discharge from hospital and attending a cardiac rehabilitation programme. It was at this stage that many people felt vulnerable and needed information most. One man said that although there was plenty of information on tests and treatment he could find nothing about how he might be feeling.

The sources of information that people had found useful were:

  • The series of heart information booklets published by the British Heart Foundation - available from the BHF website or in the hospital
 

He found the British Heart Foundation's heart information booklets and the BHF website useful.

He found the British Heart Foundation's heart information booklets and the BHF website useful.

Age at interview: 69
Sex: Male
Age at diagnosis: 67
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Well a lot of the information I got was from the British Heart Foundation booklets. They produce eighteen booklets. They're clear, concise, well written and I strongly recommend them to anyone because when you have heart problems for the first time, you don't know anything about the subject really. 

You barely know that you've got a heart and its function. But these booklets in simplistic terms explain it to you and it's the only real source of information in the early stages and as I say, I strongly recommend it.

Did you look anywhere else?

I looked on the Internet as well. British Heart Foundation again, have got a superb web site. Lots of information; well written, well documented, easily accessible. So these were the two sources of information for me and of course the cardiac nurses are very good and everybody involved with cardiac problems, they've all been there, they're helpful. There's a lot of information out there for people. 

  • Videos which one can watch in the cardiac care ward
 

A video he watched on the cardiac care ward helped him during his recovery.

A video he watched on the cardiac care ward helped him during his recovery.

Age at interview: 66
Sex: Male
Age at diagnosis: 65
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There was a video shown to us in the heart unit. It's actually done by John Cleese and it had a very poignant part in it. The very first lines of it said by John Cleese is, it said, 'you are the lucky ones, you are alive. You've had a heart attack and you've survived it. 

Now we can do something about it, medication, surgery. We can now control it and we can control your life and give you your life back. You are the lucky ones, you have survived.' And I had that message in my mind all the time, 'I've survived the heart attack.'  

  • Booklets and newsletters provided by heart support groups and national cardiac organisations (see 'Resources' section)
  • Talks at cardiac rehabilitation programmes on topics, such as how to prevent another heart attack, latest developments in cardiac care and relaxation techniques
  • Newsletters published by heart support groups and national heart organisations
  • Talks by specialists, pharmacists, or dietician's at heart support groups
 

He learnt a lot from the talks at the support group he joined.

He learnt a lot from the talks at the support group he joined.

Age at interview: 69
Sex: Male
Age at diagnosis: 67
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One, they're all like-minded people that they've all had heart problems or heart attacks or bypasses and all the rest of it. But I found the most beneficial thing was the speakers they get there to talk, and the last time I went was in October and they got this fantastic doctor and he explained everything in a way that I could really understand and I really did enjoy that. I'd love to have got hold of him after the meeting, ask him some more questions but I couldn't. 

The way that he was talking, you said you found it really good the way he was talking, how was he talking to make it interesting?

He explained it in such a way. He gave all the odds against, if you have a heart attack, how long you're going to live after a heart attack. If you have bypass surgery, how long you can expect to survive after that and all the different things that can go wrong with you, and generally speaking he laid it out in a language that I could fully understand and knew exactly where I was, and I found that most beneficial. 

But he explained things about the cardiac, the heart that I didn't really know about and little things that he pointed out, I found most beneficial. 

 

Talking to other people who had had a heart attack helped him.

Talking to other people who had had a heart attack helped him.

Age at interview: 67
Sex: Male
Age at diagnosis: 62
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Yeah, I think it's, it makes people feel that they're not by themselves. It's not just you that's having this problem, there's a lot of people out there having the same problems. That were one of the reasons I joined heart group because the problems I had, other people had them besides you know. 

I've been to one or two meetings and they've said, 'Oh I've had that and you know, I've done this and I've done that and this has happened.' I just go down and if anybody asks me I just say, 'I'm okay now, I've just got three scars, that's all.' I've had scars playing football, I've had my nose kicked in, it lasts for so long then it disappears, you forget about it.

 

Talks about the different sources of information he found helpful.

Talks about the different sources of information he found helpful.

Age at interview: 61
Sex: Male
Age at diagnosis: 49
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Some I've got off the Internet, but you have to be careful with the Internet. Just typing in heart disease and seeing what comes up can sometimes be a mistake. You have to make sure you go to the right sources. So I tend to rely on the British Heart Foundation's web site for that sort of information because I know it to be well researched and it's a respected source. Some of the other stuff that you get, particularly from American sites, is not always applicable to over here. 

A lot of the British Medical Association booklets and information leaflets are very good and others I've got from references from good medical textbooks, that if the book is good then the sources are likely to be good, and also from that you can actually go and look at the original research material that they've used to write their own articles. 

So that's not a route that many people outside would take, but there is a wealth of good information there that is very well and very simply put. 

As I say the British Heart Foundation, the BMA stuff, the Family Doctor series. There's a lot of good information out there. The BHF in particular do some very useful booklets, which put things very simply and very clearly and a lot of those are enough for most people.

The family doctor series, is that journals?

No they're booklets you can pick up in the chemists. They're quite readable, small booklets, fairly cheap and they set out things very clearly, very straight forward and they help people to understand what's going on and once you've got people who do understand what's going on, they're better able to gauge what they should be doing themselves and more importantly what they shouldn't be doing. 

Last reviewed June 2017.

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