Atrial fibrillation
Psychological effects and facing the future with atrial fibrillation
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, as well as concerns about the future.
Psychological effects
Jeni, in her early 40s, talked of ‘feeling like a little old granny’ after her diagnosis; others spoke of anxiety, panic attacks and depression.
Roger, in his early 60s, felt he was 'living in a body 20 years older' as his symptoms worsened. He felt that AF was controlling his life.
Although she had, come to terms with her condition, Nuala was anxious, lonely and in ‘total despair’ when first diagnosed. She said that being diagnosed with a heart condition was a form of grieving and felt that she was ‘the only one is the world with this’.
Gail, a GP, found the sudden changes in her body difficult to cope with and felt like a failure.
David X explained how some people had not understood how unwell he felt due to his AF.
David X explained how some people had not understood how unwell he felt due to his AF.
James’ wife, Jenny, spoke at length of the impact his stroke had on her.
James’ wife, Jenny, spoke at length of the impact his stroke had on her.
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 therapy (CBT).
Eileen explained how she had gone on antidepressants as a result of her AF.
Eileen explained how she had gone on antidepressants as a result of her AF.
Glyn tried antidepressants without success. Cognitive behavioural therapy (CBT) helped him ‘a certain amount’ to control his anxiety and panic attacks.
Glyn tried antidepressants without success. Cognitive behavioural therapy (CBT) helped him ‘a certain amount’ to control his anxiety and panic attacks.
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 while minimising their risk of stroke.
Dr Tim Holt explains what a diagnosis of AF might mean long-term.
Dr Tim Holt explains what a diagnosis of AF might mean long-term.
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 (see also ‘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 (see also ‘Medical procedures and interventions for atrial fibrillation’).
Elisabeth X wonders whether her AF has shortened her life.
Elisabeth X wonders whether her AF has shortened her life.
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.
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.
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.
For Nuala, science held out hope of a breakthrough in the treatment of AF.
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.
Dr Tim Holt talks about current research into atrial fibrillation.
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 was 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.
Although Gail considers her AF ‘a lifelong problem’ which may shorten her lifespan, she believes it makes her appreciate life more.
Freda is realistic about the future and believes in making the most of the present.
Freda is realistic about the future and believes in making the most of the present.
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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