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Heart failure

Getting the diagnosis of heart failure

Receiving a diagnosis of heart failure will always be difficult. Choosing the best time to give the diagnosis is also hard because doctors need to know results of tests and have to take account of each person's needs. Some people want detailed information about heart failure straightaway, others need reassurance that something can be done to help them. Those we talked to expressed a range of different attitudes to getting a diagnosis and some were still unsure what heart failure meant (see 'What is heart failure?').

Some people had been given the diagnosis by a GP and liked talking to someone they knew about their problems; one man described how he was seen by two GPs from the same practice, one of whom has a special interest in heart failure. Several appreciated straight talking, one man said that he had received a very clear picture of his heart failure from a hospital doctor and that he imagined his heart as a 'withered hand'. but balancing the diagnosis with reassurance was imprtant for others: being told something could be done reduced the shock of the diagnosis for one woman. Several people said they found it difficult to visualise what was happening inside their own body despite having been shown diagrams, ECG print outs and angiograms by doctors.

 

Received his diagnosis of heart failure from a GP in his practice.

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Age at interview: 64
Sex: Male
Age at diagnosis: 63
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The GP yeah well what he did, he gave me a sounding on the chest you know usual stethoscope job, checked my blood pressure which is normal, and all that, and he started, I told him the symptoms of what I was having, that's how he set me off on, initially he set me off on a beta blocker, no another type ace inhibitor but it gave me an awful cough. And also so, that particular GP he referred me to another GP in the practice who was more, who does a lot of heart work at the hospital. Well I say a lot, he does a clinic there, and he started' 

I had that echo cardiograph and he diagnosed heart failure. He told me there and then, the same day and then he [treated] me from there on you know with, it took him six months to build me up to this level of medication because he increased the beta blocker at a slow rate, he didn't give them your full 10mg of it, he started off at 2mg and slowly built it up over a few weeks and weeks and that's, until what I'm on now. And I feel not bad at all really you know.  

 

He understood his diagnosis and visualises his heart like a withered hand.

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Age at interview: 62
Sex: Male
Age at diagnosis: 56
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It was best explained, actually, by a young registrar because this was, again post the liver transplant thing and this, what's it called, I can't remember the name of it now, cardiomyopathy thing reared it's ugly head and I said, 'Well can you just explain to me exactly what..', and he explained how it can carry on at the sort of same level and that factors which can influence can actually precipitate it into a worse situation or it can, as I said, just carry on at the same level.  

And basically, he said, 'It can't get better because the area of muscle in the heart is, I don't think it's destroyed but it just doesn't function properly.'  It's rather, presumably a bit like everything, having a withered hand or something, it just simply doesn't do...it's there but it doesn't do its thing properly and that's what it is. And it's not going to get better hence, as the great man said, 'You can't exercise your way out of this one'. So I mean, I just understood it in terms of a picture and that was it really.

 

Was reassured that there was something that could be done for her at diagnosis.

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Age at interview: 69
Sex: Female
Age at diagnosis: 67
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I was told I had heart failure at the [hospital] when they did the angiogram. I always thought heart failure was really the bottom line, you know, you were then going to just die, but you don't apparently (laughter). You can creep along and do very very well. You get the medication right and your  weight and your diet and you know, behave, you have as much chance as somebody who has faulty valve or arteries and has you know stents and pacemakers you know you can, if its heart failure, be quite successful. So I was alarmed because I wasn't expecting that, I thought it was more angina, and then when they said it was cardiomyopathy and was dilated, I thought that didn't sound too healthy having a heart that was enlarged and not functioning properly, but then they said not to worry so but then it was all going happen with medication and eventually with a  pacemaker.  

In the past when you didn't have the pacemaker, you had to wait for a heart... and have a transplant, and then start all over again with a healthy heart, but now medicine and sciences and all the various areas where they know what they can do powerful medication, the right ace inhibitors and beta blockers, they have all these pacemakers available now, so you can still enjoy your own heart with a pacemaker ticking away for you giving you the electrical impulses and synchronising your beat, your heart beat, so therefore you can still, you don't have to wait for another heart. You don't have to, its not that serious. There is so much on the market now apparently in that field of pacemakers. So when they said it was heart failure and know how I can be able to have  a successful life, I thought well ok, just go with it, we know what it is and just try and understand it. 

 

He found his diagnosis very difficult to grasp.

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Age at interview: 49
Sex: Male
Age at diagnosis: 44
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I was convinced, I'm not going to sleep I'm going to die, I'm not going to waken up. They've said I've got heart failure, does that mean I could go for a bus and just die at the bus stop? I think for a layman it's hard to take in when somebody says, 'You've got heart failure', you don't understand it, the term. The doctors will explain that, explained it and explained it but I find it hard to take in!  To me it's a bit of double dutch! I don't know you know, I think the word 'heart failure' frightens anybody. It's like the word 'cancer', anybody's got cancer it's everybody's terrified, 'I'm going to die - but some do, some don't!'

It is difficult to grasp because you can't basically see what's wrong with you. You can feel it inside you, I mean you've chest pains, and you say, 'Something's not right', but it's hard to grasp, I've been sitting looking at scans and things like that and to me it's just a big blob there somewhere, so why am I still ill? I'm a big fella, I'm a big fella so I've got a big heart, but it doesn't work that way!

We spoke to some people who were given a diagnosis in hospital while recovering from emergency treatment; some felt they had been unable to respond because they were shocked and couldn't think of any questions, and several felt they had been too ill to absorb information about heart failure. Some had other medical problems to cope with, for example one woman whose bypass surgery had caused some complications said she had never been given a diagnosis of heart failure. Several older people were unclear about what the diagnosis was or how it differed from other heart problems. It was not always clear to people that they had had a diagnosis; one woman for instance said that it had only been mentioned in passing that her heart wouldn't get better and that she hadn't taken much notice. Others described how doctors talked to them in detail about surgery and altering medication but didn't give them an overview of heart failure.

 

 

He was not well enough to really understand his diagnosis.

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Age at interview: 82
Sex: Male
Age at diagnosis: 72
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Well I don't know what they did for four and a half weeks while I was unconscious obviously,  but I think that the thing that came uppermost was that I was terribly weak, hopelessly weak, and I was aware that they were giving me all sorts of food to build me up. But I got frightened by this, and I think at times I was a very poor patient, not that I reacted against the treatment but I think I was... confused about the whole thing and I had to start and learn things right from the beginning again.

I think I was told a few things but I was not in a receptive mood, I couldn't take it in. I mean my life had been blank for four and a half weeks, and I had to be nursed back to normality against all the prognosis and I think a lot of what I was told didn't... receive in my mind. Does that help?

Well they kept drawing blood from me of course, but there wasn't anything very special at all about the treatment I don't think. They'd got the... I was very much congested in the chest and so on and they cleared that up and then they began to talk about me going home. I was very happy about that but they didn't tell me a great deal about my condition. The doctor simply said 'Well you've got heart failure and you need to be careful of what you do,' full stop.

 

She has not had a diagnosis of heart failure.

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Age at interview: 69
Sex: Female
Age at diagnosis: 64
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No, no-one's ever actually said 'you've got heart failure' and I don't consider myself with heart failure. Things went wrong on a by-pass but now, it's fine...and I don't think of myself with heart failure.  

The only side effect, psychologically, is you lose confidence to do things. Now I used to drive, but at the moment, I'm trying to grit my teeth again and start to drive. I know I should drive because it's essential, you never know when you might need to, I don't feel I'd be unsafe to drive, it's just having confidence. And I have lost a lot of confidence in what; I'm not sure what I'm capable of doing.  

 

Describes her diagnosis of heart failure.

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Age at interview: 76
Sex: Female
Age at diagnosis: 74
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Well first of all it wasn't a diagnosis, this was from somebody at the hospital, the specialist, he said the wall round my heart was rather thicker than normal and that's why it had to work harder, or something.

Yes, well the diagnosis wasn't the first time, it was probably the next time I went up to the hospital. At one time I went up every couple of months or something, 2 or 3 times in all. But now I just see the doctor.

And what did they explain to you about heart failure?

I don't think they explained a lot, really. I think they talked about a high fibre diet and that was it, really, and you know, take the pills.

Did they explain what it was?

Not in any detail but I just thought to myself, well you know, if you've got heart failure then that's how you'll die one day, the heart will pack up and that will be it. I think my father had 'heart' and I think maybe his father as well. I mean I remember my father, he was watching a snooker match and the boy made, what is it 147? A lot of excitement and it was probably too much for him and he came home and he died, but he was 84. But it was quite a nice way for him to go, in a way. We got a terrible shock but there you are.

Have you been led to expect that it won't improve?

I think somebody did mention that, yes.

At what stage would that have been?

I think it might have been one of the specialists at the hospital. He didn't say very much, just said, you know 'it won't improve' or 'it won't get better' or something like that.

It doesn't sound as if it was a shock to you, though, when you were told?

It was sort of said in a sort of, it just came out in a sort of off-hand way, you know. I didn't take too much notice of it, really. That was it.

 

He was diagnosed with a tired heart and explains some of the difficulties he has had since.

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Age at interview: 81
Sex: Male
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And I went to the doctor up there, he gave me ECGs and goodness knows what else and told me I'd got a very tired heart and there wasn't much he could do about it. So, fair enough, if he can't do anything he can't do anything. Anyway, just before I came out he said, 'Just a minute', he said, 'I've got an idea'. And I was already on a pacemaker, I forget how long I'd had that. But he said, 'Come with me'. Went round to the pacemaker, when I got there and they took me in and they checked me pacemaker again. And he said, 'What we're going to do', he said, 'Is.. I'm going to change your pacemaker and'' - why I don't know but it was something to do with the controlling of the heart and one or two other things - but anyway, he booked me in for the' that was on a Monday, and it was on the following Friday he had me in. And they took my old one out, put my new one in and, in actual fact they gave me the old one for a keepsake [laughs] but' we won't...

Anyway, he put that in and from that time on things started to pick up. So whatever... the idea he had, they put in a new type in or something like that, and it seemed to have a good effect, you know, and we haven't been all that bad since. But, my main troubles now is the pills I'm taking, I suffer with very low blood pressure, always have done, and so the pills they gave me was to try and look after my heart. Well then I started coughing, coughing like mad and nearly choking sometimes, and went down there and they sent me away, and' oh no, first of all they said it was fluid on the lungs. So they gave me water tablets, to clear the fluid on the lungs. This didn't do' well it started to do' something, but then everything else went wrong, you know. 

So I went back down and see him and he said, 'No, we got the tablets all wrong. We'll have to rearrange them'. Because what with my heart and my, whatsit on the lungs, the tablets I was taking for my heart interfered with the tablets I was taking for my lungs. Well then they said they'd got to find a balance between the two, and that's what we've been doing. Now I think they've come to the final stages where I don't think they can do much more now. But my coughing is starting up again and that's' why I've got to go down and see the doctor. He put me on antibiotics before which done quite a lot, so whether he'll put me back on them or not, I don't know. 

Vivienne was misdiagnosed at A&E after being taken there because of breathlessness. At A&E she had a chest x-ray and other tests that didn’t revealed anything wrong with her heart. Doctors thought that she probably had suffered a panic attack and sent her home. But she continued feeling breathless and fatigued and went to see her GP who is also a cardiologist (heart specialist). He recognised her symptoms as possible heart failure and referred her to see a consultant.

 

Vivienne was misdiagnosed at A&E but she knew there was something wrong with her and went to see her GP who is also a cardiologist.

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Age at interview: 61
Sex: Female
Age at diagnosis: 60
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I’ve been poorly for some time now for over a year. And in September last year, that was when I first took bad. It was in the middle of the night and I was in bed and all of a sudden I woke up and sat up, quickly and couldn’t get by breath whatsoever, was gasping for breath and luckily my daughter was in the bedroom next door but I couldn’t shout, call for her so I tried to get up to go and get her and I could hardly walk. When she saw the state of me, she, although she doesn’t drive, she’s only a learning driver, she came down and put me in the car and took me down to [name] Hospital. When I went to [name] Hospital I was seen by the doctor but I was sent home. They, they thought it, well I think it was a chest x-ray they gave me, they took some other tests but it was a chest x-ray they gave me and they said they couldn’t find anything wrong with me and they thought it was panic attacks mainly and they sent me home. 

This happened on about three occasions, each time it was in the middle of the night, waking up and couldn’t breathe and going down to the hospital again and every time I was sent home. I knew there was something wrong with me, I knew my own body and I just couldn’t believe the way I felt. Sometimes I could walk and talk alright even and other times I couldn’t. Even my voice had changed which still to this day, it has. I was so confused and feeling so ill that I wanted to go and have a second opinion so I phoned up my doctor’s surgery and I asked to see my own doctor, Dr [name], who actually apart from being a doctor, works at the hospital in heart, in things to do with the heart. He saw me and when he called my name, just walking from the waiting room to going to his room and sit down, I was gasping for breath and he looked at me and he asked me what was wrong and when I told him, he said, “Well I’m going to do this test, I think I know what it could be but we have to wait until we see what the test is.” I can’t remember the name of the test but I know if I was alright, the results should have come back about a hundred and mine came at one thousand, four hundred and something. And I told Dr [name] the way I was feeling and that I’d been sent home from the hospital and I said, “Dr [name], I know my own body, I know there’s something very, very wrong. Please can you find out what’s wrong and fix it for me.” 

Anyway he found out what was wrong with me and he had me into hospital where I was under Dr [name], [name of hospital] Hospital, and they then put me on tablets. Dr [name] first put me on the tablets and the tablets were so, so good. It was unbelievable how much that they helped me. Then eventually I got put on more different types of tablets, I’m on the highest dose now of all the tablets that I can go on.
Several people only recalled receiving a diagnosis of heart failure when they asked questions; one woman had been put on medication without realising what it was for and found out she had heart failure when she asked a doctor if she could stop taking it. Another man only realised he had heart failure when he saw a British Heart Foundation advertisement in a newspaper and asked his GP for confirmation. One woman who had waited 14 months to get a diagnosis said that heart failure cases should be dealt with more quickly.

 

She was told she had heart failure by a nurse in hospital.

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Age at interview: 53
Sex: Female
Age at diagnosis: 49
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I was feeling confused I still didn't really know what was wrong with me. Nobody had told me! I was still on my own tablets from the GP, nobody had given any other tablets.

I was in hospital for a week in which time I had blood tests every day, I was taken off the heart monitor, but still nobody said to me what, you know... I didn't know what was wrong with me. "What was wrong with me?" I asked the nurses and they said, 'Well, you've got heart failure'...  Heart failure? Was I going to have an operation? What was, you know, I didn't know what was going on.  

I badgered everyone. I wanted to go home, I didn't like being in there because I felt no one was doing anything. Then a heart failure nurse came and saw me and explained to me what was going on. I felt easier and she said I could go home but I had to take beta-blockers. I was given beta blockers before I went and I had my blood pressure taken and I seemed to be okay. 

He didn't tell me why he put me on the water tablets, he just seemed to - when he saw me - he seemed to be really shocked as if he didn't know how I got into that state, and he said, 'Go straight home, go to bed. Take these tablets and I'll phone you and see how you are'. Looking back on it now, I wonder why he didn't send me to hospital. I wish he had of done, I wanted to go to hospital.

When I walked along to the doctors that day I thought I'm going to be in hospital by this afternoon and I wasn't and wished I was. I wanted to be in hospital. I wanted someone to do something for me, and even when I saw other doctors after that, I thought, and I was feeling a lot better, and I went to see a house surgeon I think it is or the one under the consultant, and he said to me, 'How are you getting on?' And I said, 'Oh, I'm fine,  I'm really getting on well,' and he said, 'Yes you look well,' and I said, 'Well can I come off the tablets now?' And he said, 'No.'  And I said, 'Why not?' And he said, 'Well you'll never come off the tablets'.  

I thought once I got better I wouldn't have to take tablets anymore. I never realised I'd have to take all this amount of tablets for the rest of my life. That's another thing that shocked me. 

 

A newspaper advertisement made him think he had heart failure.

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Age at interview: 74
Sex: Male
Age at diagnosis: 73
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Well did I not say this to earlier on, that when I was seeing, well it wasn't my doctor but she was part of the practice and she was extremely good, but when you go down for an emergency you take any doctor, of course. And she'd been working away on this and she'd been increasing my diuretic pills and she was making an appointment for me to see, have a scan. And this was before I got to the consultant bit, when I started reading these things. I was saying, 'This is what this doctor thinks I've got, I'm sure of it' so I kind of cut it out and I took it down and I said, 'By the way you're treating me, do you think that I've got heart failure?' And she said, she obviously didn't want to put the fear of God up me and she said, 'Well yes, but I think they go over the top a bit'. In other words don't take everything you read in the paper!  And that's when I realised that she was treating me for heart failure which I thought was just puffiness, if you know what I mean. I was probably a bit dense in clicking but that was when it really clicked, from the advert. 

I don't remember, if it was it went over me. It was the actual text matter describing the whole thing and spelling it out that there was no cure for it, that was the thing. You've got it and it was a no-hope sort of advert, really. And... well we're all going to die sometime, and whether they're just putting off the day I go, because they certainly won't find a cure. So I mean, maybe for once they weren't being too alarmist that in fact there is no cure anyway. But they can do a lot for you before you pop off, that's all you can say.

 

She wonders why it takes so long to get a diagnosis of heart failure after tests.

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Age at interview: 65
Sex: Female
Age at diagnosis: 59
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Well the only thing I would like to say to an expert is why do people have to wait such a long time to get... diagnosis... done quickly? I mean when I went for an angiogram I had to wait over fourteen months which is a long time.  I mean and I can't even get one done at [place name], we don't have a centre here yet, we've got to travel to [place name]. And you're away all day but you're not admitted, you're just on, you're in a bed obviously, but that is a really, something to me I think you shouldn't have to wait with heart trouble, it should be done as quickly as possible because that's the stress that brings on these sudden deaths. And I think that's what they should be doing now, concentrating on getting things, getting people seen within weeks not months. 
 
The National Institute for Health and Clinical Excellence (NICE) have produced guidance about the diagnosis and treatment of heart failure which can be found on their website.




 
 

Last reviewed April 2016.
Last reviewed April 2016.

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