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Atrial fibrillation

Feelings about being diagnosed with atrial fibrillation

With little public awareness of atrial fibrillation (AF), few people had any knowledge of the condition when diagnosed. As Elisabeth X said, ‘I didn’t know anything about anything. I knew about babies’. Others had heard about AF from friends or had a nursing background. Mary had heard about it from a neighbour and a friend with AF in her church choir but had ‘no idea whatsoever’ about the condition. After her diagnosis, she felt she had ‘joined the AF club’. Some people felt fear when first diagnosed and a sense of anxiety about the future. Roger experienced uncertainty, as he was aware that symptoms could range in severity. Bob said that his first question on receiving the diagnosis was ‘Am I going to die?’ He said he was reassured that he could have treatment, and then just ‘wanted to get rid of it’. Without reassurance or information, Elisabeth X was ‘absolutely terrified’ when diagnosed and feared dying and ‘leaving my children behind’. Eileen found the recurrent and unpredictable nature of AF frightening: ‘you’re frightened of doing anything. You’re just waiting for the next time it happens’ but then realised ‘you can’t let the bugger beat you, so you carry on and hope for the best’.
 

Brendan found a formal diagnosis sobering and had questions about how this could impact in the longer term.

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Age at interview: 59
Sex: Male
Age at diagnosis: 57
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I suppose I found a formal diagnosis, I hadn’t been terribly familiar with atrial fibrillation before, with what it was. I’d heard used words, you know, term, you know, like irregularities, which are much less threatening sounding. So to have a formal diagnosis of AF was quite sobering. And I wasn’t sure either whether, you know, again, I wasn’t quite sure just well, how serious is that, what does that mean in the greater scheme of things? Does that mean you can continue leading a normal life or does that mean something, you know, could be health threatening, you know, in the longer term? So that was very sobering, as I say. I found the consultant extremely positive about it. I thought he was very, very good and very confident about trying, you know, whatever could be tried. And that really was the first sort of, I mean I’d read about atrial fibrillation and I sort of I spoke to people about it and it just, you know, was came to terms with that fairly quickly.
 

Noel had no idea what AF was when he was diagnosed. He was frightened to leave the house.

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Age at interview: 62
Sex: Male
Age at diagnosis: 60
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Sent me for an ECG and then they noticed that it was arrhythmic. And I wasn’t told at the time but I was sent home, but I got a phone call from the GP, my GP on my mobile number saying to come into the surgery. So I went into the surgery and they told me about this arrhythmic thing that I had and they called it AF, atrial fibrillation. I’d never heard of it in my life before and I think that’s the story of most people. When they are told they have AF, they have no idea what it is, and I had no idea. And they said and, “We have to put you on aspirin straight away.” And I thought, “Oh, why’s that?” And they said, “Oh purely as a precaution.” And I thought, oh precaution, heart, irregular rhythm, phone calls on my mobile, put on aspirin, immediately start to worry, panic - and I did [laughs] all of those things. And I sat, I went home and the doctor arranged to get me up to the hospital to the cardiology unit at the hospital here in the city. And but until that happened, I was frightened to move out of the house. I just sat in the garden with a cup of tea and watched things going on round about me and the birds in the garden feeding and things, and I just didn’t want to do anything. Didn’t want to move in case I collapsed.
Having led healthy lives, some people said they were ‘fed up’, ‘annoyed’ or ‘angry’ with the diagnosis. Jenny, whose husband James had a stroke as a result of undiagnosed AF, felt regret. Having heard his heart beating irregularly a few weeks before and dismissing it as unimportant, she reflected that they wished they had acted. She said that they now had to live with thoughts of ‘if only’.
 

Dot was annoyed that her body had ‘let her down’.

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Age at interview: 64
Sex: Female
Age at diagnosis: 55
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I was annoyed, because I’ve I’m an incredibly fortunate person. I’ve had enormous rude good health all my life and I have this enormous amount of energy, you know. I don’t get coughs and colds. I’ve had flu three times in my life. I’ve worked for forty years and the only time I’ve ever had time off was I’d got German measles and they wouldn’t let me in work. You know, I had a knee replacement surgery and I stayed off work for like four days or something. So, you know, I I’m incredibly fortunate, so the idea I had something wrong with me I’m afraid I took it rather badly. I was, so I was annoyed really. I wasn’t relieved or anything. I was annoyed. I think that was my reaction. I wasn’t even relieved to find out why I’d been clammy and why I’d been walking round sort of clammy and stuff like that. Anyway, so that was my response. I thought the old body had rather let me down, and I suppose if you’ve had such good fortune with your health, I think it’s a surprise to find that maybe your good fortune has given out a bit.
Although the diagnosis was unwelcome for some, others were not unduly worried. Richard felt calm, knowing that his condition could be managed. Some people had got so used to having palpitations before their diagnosis that they saw them as part of everyday life. Pauline and Vera were ‘relieved’ to have an explanation for their symptoms. Ginny, a passionate mountaineer, accepted the diagnosis but was disappointed that she would not be able to get insurance to travel abroad for a period after her operation. (For more see ‘Impact of atrial fibrillation on relationships and leisure time’).
 

On hearing that Tony Blair and Elton John had had AF, Raymond felt reassured.

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Age at interview: 78
Sex: Male
Age at diagnosis: 64
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Round about that time, two very famous people had it. Elton John and Blair, Tony Blair and from what I picked up from listening to what they were going, Blair never stopped. I don’t even think he stopped even to get to get the test done [laughs]. And it was so that was that was it seeing whether they had, I’d picked up both of them up over the over the years and that. They didn’t stop so I said, “I’m not going to stop either.”

I mean both Elton John still tours. Tony Blair still travels the world lecturing. He’s done the same as everybody else and he’s got a bit older and put a wee bit of, put a pound or two on in places I mean you see photographs of him but, you know, that’s the sort of thing, that’s the sort of thing that you shouldn’t do is allow the weight to go on.
People we interviewed had different attitudes to telling others about their diagnosis. Some chose to ‘keep it a secret’, not wanting to distress family and friends. Others were more open. Dave used his diagnosis to explain to friends why he could no longer keep up when walking, while Chris X’s father-in-law, a GP, set about researching the condition for him. Stopping people’s concerns and explaining the condition was important but not always easy. Nuala described how her diagnosis was ‘a topic of conversation’ wherever she went. While she accepted that people were genuinely caring, she found it irritating having to explain AF to friends who assumed she had had a heart attack.
 

Keith saw it as a sign of weakness to reveal his condition.

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Age at interview: 61
Sex: Male
Age at diagnosis: 57
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No, I suppose again, a bit like the ostrich, I just stick my head in the sand and if you don’t look at it will go away but no, I didn’t tell anyone. I told my family, immediate family because there were drugs involved with keeping the heart on a regular plane as it were but I didn’t tell anybody else, no, no.

Was there a reason you didn’t or?

No, that’s quite a, that that’s a good question really. I don’t like to admit weakness anyway and I would see that as a form of weakness I suppose. Yes, I suppose that’s the truth of it really. I didn’t want to admit, I wouldn’t like to admit to other people that there’s a weakness there [laughs].
 

Janet explained how family responses to the news could differ.

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
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I think it’s a bit scary for family if they think, “Oh my god, is she going to have a stroke? Is she going to have a heart attack?” But I’ve never taken that attitude myself. So I don’t think anybody in the family is thinking that. Having said that, that’s not quite true because two of my sons I think have been quite concerned and one is very concerned that I don’t take warfarin. That would be his view, that or the other one and I think the other one oh, well perhaps just anxious for, you know, for how I’m going to be. 
(For more see ‘First signs and symptoms of atrial fibrillation’ and ‘Diagnosing atrial fibrillation’).
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