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Atrial fibrillation

Psychological effects and facing the future with atrial fibrillation

Psychological effects
As well as physical symptoms, atrial fibrillation (AF) can have unexpected psychological effects on people’s lives, bringing about unwelcome changes and a sense of disruption. Jeni, in her early forties, talked of ‘feeling like a little old granny’ after her diagnosis; others spoke of anxiety, panic attacks and depression. Roger, in his early sixties, felt he was living in a body twenty years older as his symptoms worsened. He felt that AF was controlling his life. Although she has now come to terms with her condition, Nuala was anxious, lonely and in ‘total despair’ when first diagnosed. She described having a heart condition as a form of grieving and felt she was ‘the only one is the world with this’. Gail, a GP, found the sudden changes in her body difficult and felt like a failure.
 

David X explained how some people had not understood how unwell he felt due to his AF.

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Age at interview: 73
Sex: Male
Age at diagnosis: 61
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To people looking at you, you look perfectly normal but what’s going on inside you affects your psychology. It affects the way you interact with things and it can be difficult. But, of course, it’s not understood. If you’ve got a broken arm, people can see you’ve got a broken arm, but when you’ve got something that’s happening to your heart, they don’t understand and it can be quite a difficult situation. 
 

James’ wife, Jenny, spoke at length of the impact his stroke had on her.

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Age at interview: 55
Sex: Female
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I think we’ve both changed. I think we’re both a bit… I think we’re both a bit more emotional. I’m definitely more short tempered. I’ve always had a short fuse. I would say I don’t have any fuse any more. I find it very difficult to cope with the smallest of small things that goes wrong, and things that should be little worries are enormous worries, which is stupid, because we’ve had the we’ve had the big hit haven’t we? I can’t think anything is ever going to be as worrying as all that, you know, that whole episode was. Yeah, we have we have yeah, we have both changed I think.

So has it impacted on your relationship?

Not on our relationship together, no, it hasn’t. I would like to turn round and say, “Oh, I now know that life is too short to argue and I’ll always be nice.” But I know that that’s, that would be not the truth [laughs]. You like to think, “Oh well, oh God, he’s been through this. I’m never going to shout at him again for not hanging his clothes up.” But, of course, I do. So yeah, we’re, I’m definitely a changed I am definitely a changed person. James probably would tell you that he probably isn’t. I think I’m a completely different person. Not for the better, not for the worse, just different. I can’t quite put my finger on it really. I would say my life has changed for the worse, but I can’t really tell you why. I don’t I don’t know why. That’s just.

Just how it…?

That’s just how I feel. And I’ve dabbled I’ve dabbled about with antidepressants, but I don’t know that they really help. I think you’ve just got to accept, which I find quite difficult, that you’ve had a big whammy and that it is going to change you.
The uncertain and irregular nature of AF episodes can make people feel out of control and unable to plan their life with confidence. George Y was adamant that he ‘does not want AF’. He found the unpredictability and lack of control very unnerving and felt anxious that his AF would take over eventually. Carin spoke of living in fear of having an episode of AF, saying that while people dismissed AF as a benign condition, she felt as if she was ‘in a trap’. Geoff spoke of how he had become afraid to go too far from home and from his local A&E department. To try to improve the quality of their lives, some people tried antidepressants or cognitive behavioural therapies.
 

Eileen explained how she had gone on antidepressants as a result of her AF.

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Age at interview: 63
Sex: Female
Age at diagnosis: 53
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I’m on an anti-depressant, which was supposed to be for a year, which happened some time during the AF history. It all got too much. I don’t like not being in control and I think that was something else that you asked, how the AF affected you. You can’t control it and I didn’t like that. You know, you don’t know when it’s going to happen, when it’s going to hit and you’re not in control of it and having run the house and brought the kids up, I didn’t like not being in control and it affected me quite badly. So I ended up on this anti-depressant thing, which I’ve tried to come off a couple of times but what with things happening the GP said, “You can’t come off it until you’ve had three months relatively stress free.” Well, in this house, it’s not possible [laughs].
 

Glyn tried antidepressants without success. Cognitive behavioural therapy (CBT) helped him ‘a certain amount’ to control his anxiety and panic attacks.

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Age at interview: 64
Sex: Male
Age at diagnosis: 56
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I did try anti-depressant tablets but there again, they didn’t work and so I thought, well, there is another way, which is called cognitive treatment, which means they, talking therapies they call that, which they have you into a course. They tell you how best to control a panic attack, how best to control anxiety and depression yourself. It’s telling you your mind is a strong tool and you should use your mind more. In other words, if you feel as though you’re going into anxiety and a panic mode, tell yourself and tell yourself you can’t do something, tell yourself you can do something. And then that, hopefully, within about five or ten minutes of telling yourself and going forward, these attacks tend to fritter out and die down a bit. But if you get more anxious, you get more palpitations. So, you know, what they try to do is try to reassure you that it’s a common thing to have, these attacks but don’t let it dictate your life, what you do, what you don’t do, you know.

It has helped a certain amount, yes. You learn to control the anxiety and depression a lot better than you did before yes, it gives you some tools to fight these things, if you know what I mean. Tablets are not always the answer.
Facing the future
AF is a chronic condition which can be successfully treated. But it needs to be managed to ensure people enjoy a good quality of life and minimise their risk of stroke.
 

Dr Tim Holt explains what a diagnosis of AF might mean long-term.

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Well, it means regular reviews. It means taking medication regularly. If the person is taking warfarin, then they need regular blood tests and they’ll need to be careful about certain aspects of their lives. So all of these things affect their lives and they may or may not have remaining symptoms, even when their heart rate is controlled. So it’s certainly a very significant condition to have but, in many cases, it can be successfully treated and the risk of stroke minimised by taking anticoagulant treatment.

So what are the long term prospects for people with atrial fibrillation?

 I think it depends on how well they respond to treatment. I’ve had lots of patients who’ve had their symptoms controlled relatively easily and they’ve led normal lives. They may well get symptoms that I’m not aware of that may have more of an impact that I’m aware of as a GP but, nevertheless, they manage to continue doing all the things that they want to do in life. And then there are other people, who are older, who are perhaps more affected by it and it’s a condition that’s commoner as you get older and, obviously, in older people it’s more tricky to get the treatment regime which suits them, which doesn’t cause side-effects, which doesn’t interfere with any other medication that they’re taking and they’re probably more affected by it.
We asked people to consider the impact that AF might have on their lives in the future. Some talked about practical concerns including the effect of AF on travelling, getting travel insurance, holding a driving licence, and caring for a child with special needs (for more see ‘Impact of atrial fibrillation on relationships and leisure time’). Others reflected on uncertainty, their risk of stroke, heart attack or heart failure, and their fears of a loss of independence or a shortened lifespan as a result of their heart ‘beating so fast at times’. Some people, treated successfully for AF, expressed concern that it may return or that the technology may fail. Ginny was aware that ‘ablations might not last forever’ and that she might need to go through another operation at a later stage. Eileen feared her pacemaker may ‘pack up’ and send her into heart failure. (For more see ‘Medical procedures and interventions for atrial fibrillation’).
 

Elisabeth X wonders whether her AF has shortened her life.

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Age at interview: 74
Sex: Female
Age at diagnosis: 30
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Well, I mean I suppose I do think about the risk of stroke, yes… And I do sometimes think that, you know, the faster a creature’s heart beats, the shorter its life and I do sometimes think, well, mine has been beating very fast for a long time. So has that shortened my life? But that’s a question I have not been able to find an answer to and I’d quite like one.
 

Paul is unsure what the future holds for him. His doctors have never given him a prognosis but just knowing he has a heart condition causes him concern.

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Age at interview: 57
Sex: Male
Age at diagnosis: 55
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I don’t think that I’ve ever been sort of… I’ve never been given the information from the doctor or the cardiologist where they say, “Well, this is how it’ll go.” Yeah, nobody has actually said, you know, “It’ll become a permanent thing. It won’t get any better.” You know, I mean I’ve never really been given a diagnosis in that or prognosis of that. So it’s all been left for me to sort of ponder over how it’ll go, which again, is not perhaps the ideal because what you perceive the way things are may not be obviously, the way the way, you know, how it could be but yeah, I mean it is it is it’s worrying. I think you… everybody will have to worry about it. If you’ve got a condition of the heart, it’s automatically the one thing, “Oh my God, I’ve only got one of them and it’s.” You know anything goes wrong with it can be, you know, I think it can be quite frightening for quite a few people and I tend to try not to dwell on it too much but yeah, again, I just live each day and but I know I’ve got the condition. It’s not gone away and again I’ve got some important decisions to make probably further down the line but not at this moment in time.
 
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Marianne fears she will have a stroke in the future, although this may not happen. She fears being permanently disabled.

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Age at interview: 72
Sex: Female
Age at diagnosis: 54
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Oh, I shall have a stroke presumably, and I don’t know how bad, assuming the ablation is not effective. A junior doctor once said to me, I said, “What’s the worst that can happen?” “Oh, you could have a stroke.” He said, “But it wouldn’t be a really bad one. You probably wouldn’t die.” I said, “You mean I’d just be permanently disabled?” I thought that it probably might be better to die. Yeah, I shall have a stroke I assume, and who knows? I don’t know. That’s the end result I guess, probably. I don’t know, maybe a pacemaker would stop that, but I’ve no idea. Haven’t got into that part yet.
Some people talked about what the future might hold in terms of scientific breakthroughs. Eileen wondered whether she had ‘jumped the gun’ in having an AV node ablation given possible future advances in science. Roger expressed hope that through new medication or procedures he may be able to ‘get better control, get more of my life back from what I’ve got at the moment, because it is debilitating and it’s a strain, it’s a struggle, when you can’t do what you want to do.’ Marianne was impressed by the number of consultants working on a cure for AF, but doubts it will happen ‘in my lifetime’.
 

For Nuala, science held out hope of a breakthrough in the treatment of AF.

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Age at interview: 60
Sex: Female
Age at diagnosis: 48
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And I don’t know why I’m not calling it permanent because it’s, I’m not accepting that it’s in permanent because of hoping there’s something that will bring it back to sinus rhythm.

I still have hope that something, you know, they’ll be some sort of discovery with and particularly with stem cell treatment, I have a lot of hope in that area that, you know, watched different programmes and I know in America there was a very comprehensive programme about how they manage atrial fibrillation and one of the things was a… other heart conditions and there was a doctor in America, who’d actually, the plan would be to grow a heart through stem cells. So I thought well maybe if they could grow a heart, they could grow part of the heart maybe through stem cells.
 

Dr Tim Holt talks about current research into atrial fibrillation.

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Well, I think there’s quite a lot of research at the specialists and the specialist side over the best techniques to control heart rate and restore heart rhythm, restore the normal rhythm using these procedures of ablation and, you know, pacemakers and cardioversion. There’s also research going on to find out whether these procedures actually have a long term impact on stroke risk because, if that were the case, then obviously there’d be a case for providing them in a much more widespread way to more patients and that’s a really important research question to answer.

And then from the other sort of the service organisation side, I think there’s quite a lot of research needed to ensure that patients actually access the treatments that we know are beneficial including the anticoagulants, which have a very substantial impact on the person’s risk of having stroke in the long run.
Most people, however, resolved to be positive, not worry about AF too much, and just get on with life. For some it was a ‘wake-up call’ to reassess their lives. Nuala felt grateful that AF had given her ‘an opportunity to look at my lifestyle and what I’ve been doing’. Others talked about taking things easy and not getting stressed, trying to lead as healthy a lifestyle as possible, hoping for the best, and ‘carrying on as usual’. Accepting that ‘life is a lottery’, Ginny just wanted to get on with the rest of her life; Dot is on warfarin and felt she had ‘nothing to worry about’. For her, AF was preferable to ‘something much, much nastier’.
 

Although Gail considers her AF ‘a lifelong problem’ which may shorten her lifespan, she believes it makes her appreciate life more.

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Age at interview: 62
Sex: Female
Age at diagnosis: 44
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And I do sort of dread the thought of it kind of being a lifelong problem, and I know in one sense it is a lifelong problem but I do sort of think, “What a drag”. You know, if it’s, even if I’m sort of better now, which I hope I am, it’s going to recur sometime. But, on the other hand, there’s a sort of, ‘oh well’, you know, living life more day to day, week to week is not a bad thing. It’s quite a good thing in lots of ways. I am different from a lot of friends of the same age, who are healthy, completely healthy, and my husband I suppose, in that I don’t assume I’m going to live to be eighty something, ninety something in a healthy state. I don’t assume that, and that’s partly a kind of gut feeling, that I’m sort of thinking, “Well, if I get to seventy five, I’ll be really glad.” [Laughs]. And everything else is a bonus. So just any day feeling good is to be valued really. And that’s always a I guess a silver lining for any anybody who has an illness, that you start to appreciate days when you feel healthy much more. Yeah.
 

Freda is realistic about the future and believes in making the most of the present.

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Age at interview: 70
Sex: Female
Age at diagnosis: 68
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I am aware, one of these days I might just suddenly, you know, fall down and faint or there’s a chance like that I might I might be found dead in bed as well, yeah. Yes, I am aware of that. So every time, you know, my life is very much, I’m seventy now. Lots of people die at fifty eight and sixty and mid-sixties and seventies and so I am facing sort of sudden, you know, the end of my life on a daily basis or that if I, well, for instance, I try not to do the washing up in the sink, you know, overnight or something like that. So that the, you know, try and get rid of the dirty washings and paper works are nice and tidy and things like that. You know, they just in case I drop dead next moment you know, people are not troubled with anything of my possessions or something I didn’t, I hadn’t done or etcetera etcetera. So, yes, in a way, I have been like that. I, you know, it affects you in all sorts of ways. In a way, it’s good. Makes you carry on going, yeah. Makes your life more alert, yes.

Yes, as I mentioned a little while ago, I could be drop dead any time. So I try and make the most of the time I have, yes. I’m not afraid of dying because, you know, we all die eventually, so I [laughs] it’s a destiny we have to face up to isn’t it, yes, to go. We make the most, must make the most of what we have now, yeah.
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