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Atrial fibrillation

Impact of atrial fibrillation on relationships and leisure time

Relationships
Coming to terms with a diagnosis has implications for family members as well as for the person with atrial fibrillation (AF). Some people had restricted their activities; others talked about misunderstandings about AF and how it might affect people. Anne spoke of how nervous she had become having the grandchildren to stay, choosing not to volunteer ‘in quite the way I used to’. Gail needed to explain to friends that AF did not mean her heart was abnormal, but that ‘the electrics don’t always work as they should’. Eileen felt like screaming when her family started becoming over-protective and watching her ‘like a hawk’. Fear of caring for family members in the future could also be an issue. Glyn felt anxious about how he would care for his special needs son if his AF got worse: ‘you just don’t know where you stand. Are you going to get any worse, are you going to get better, will you be able to cope with [son]?’ Some people with AF spoke openly about their condition; others found that family members sometimes chose to speak to each other privately about it rather than in front of them.
 

Bob felt helpless when he realised how much his AF diagnosis affected his son.

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Age at interview: 66
Sex: Male
Age at diagnosis: 59
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And, apparently, my eldest son, [son’s name], took me to [town] to catch a train to London on one of the occasions I was going up for treatment and when he came home, he was in tears and he said to my wife, “I took Dad to the station. I put him on the train and I didn’t know whether I’d ever see him again.” And I hadn’t, I didn’t know about that until I saw the film being made and I hadn’t realised how much it must have affected them - but I know that there were occasions when it used to make me very grouchy and bad tempered, when it was happening, because I felt so helpless.
Like Jenny, whose life was ‘turned upside down’ when her husband had a stroke, other people talked about how AF had affected their relationships with their partner. Roger explained how his wife found it more difficult to plan social activities ‘I can have good intention to do something and then not be able to fulfil it because I’m just too tired to do it’.
 

Although Geoff had become somewhat blasé about going to hospital when he had severe episodes of AF, it was always traumatic for his wife to witness.

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Age at interview: 69
Sex: Male
Age at diagnosis: 60
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If you break your leg and you know, you know, stupidly however you did it, you’ve broken it and it’s going to get better and you hope it’s going to get better. But in this case, it’s been the most frustrating thing ever really, and it’s been worrying for my wife in particular because she’s got to drive me off to the hospital, and she goes away for a week’s holiday or something worried about me in case I might get ill. And alright, neighbours and friends can take me to the hospital or I can ring for the ambulance, but it’s always been a worry for her as well. She doesn’t say so, but it is really. And it’s scarier for somebody seeing you when you’re wired up to all these monitors and oxygen and all this sort of stuff. I’ve got a bit blasé about it and I think, “Oh, well, you know, here we go again.”  But when somebody sees you in that state, well, she’s got used to it as well but when you’re in a resus department and people are trying to come round after heart attacks, it’s a pretty sort of hairy place to be.
 

Dave was keen to reassure his girlfriend at the time that he was not ‘going to die on her during sex’.

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Age at interview: 61
Sex: Male
Age at diagnosis: 50
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Actually, that’s one of the interesting things, sex hasn’t been a problem because I don’t know whether there’s some sort of thing in that you know, it’s the whether the body says, the genetic thing is saying, it’s procreating, therefore, it’s more important for him to procreate than it is for him to stay alive.  So it’s almost as if the safety valve has actually been removed during sex because that [for him], it [an episode of AF] doesn’t ever happen during sex, which is rather intriguing and very useful too, thank goodness.
Leisure time
For some people, having AF meant curtailing leisure activities such as walking, mountaineering, going to the gym, playing squash and badminton, running and scuba diving. Carin spoke of how she no longer goes to the gym for fear of an episode of AF while exercising. She asked her doctor whether she could attend a gym supervised by someone with medical knowledge, but was told such a thing was not available in her area. Chris Y has stopped running and just walks briskly instead. He does not do any ‘extreme’ activities now. Geoff talked about how he had once loved playing tennis but had lost confidence after an episode of AF. He described it as ‘a huge psychological thing’. Elisabeth X gets breathless and ‘a sort of constricted feeling’ going uphill. She has difficulty getting up to her study on the top floor of her house and, when out, uses lifts in buildings.
 

James had a stroke due to undiagnosed AF and spoke of the ‘uphill struggle’ he had in regaining strength.

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Age at interview: 63
Sex: Male
Age at diagnosis: 59
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I remember I used to get so tired so quickly, which I just thought it was me. I didn’t realise and I had to build up strength in my hands.  My stroke went down this side, my right side and I had to build up strength in my hands and right leg and everything again. I was on a walking stick when I first came out of hospital and it was… I don’t think Jenny was working.

And everything was just an uphill struggle I suppose. I used to bounce a ball against the wall and catch it, stuff like that, because my coordination went all to pot and I tried playing golf again. I couldn’t even hit the ball off the tee and my right and my left hand went totally out of sync with each other [laughs]. But I’ve never been a brilliant golfer but it was really disappointing, but what else? What was the what was the question? I’ve forgotten what the question was.
 
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Marianne can no longer go rambling but otherwise does not find her AF too much of a problem.

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Age at interview: 72
Sex: Female
Age at diagnosis: 54
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I used to fall asleep in meetings at work, which was rather bad. I think that was because I was just overtired. Oh yes, I used to quite enjoy walking but I can’t go rambling, that kind of walking. I mean there was one occasion when I just couldn’t go much further and it was really quite embarrassing to say, “I’m sorry. I can’t make it.” So I don’t do that anymore. I don’t think otherwise it affects a great deal. I just have to take care. I mean I know where I’m going to be perhaps handicapped with it but, as I say, I now know that if I regulate my breathing, and don’t talk, I’m okay pretty much.
Other people had adapted their leisure pursuits. Although she can no longer walk uphill or go to the gym, Nuala now enjoys swimming to keep fit. Dave, who admits that he ‘doesn’t go out of his way to exercise’, now cycles instead of running, stopping as needed to get his breath. He has also learned not to stand up too quickly because of dizziness.
 

Elisabeth Y’s AF has slowed her down and reduced the amount of gardening, walking and country dancing she can do.

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Age at interview: 69
Sex: Female
Age at diagnosis: 63
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Oh, goodness, it’s slowed me down. Look at the mess in my garden. That was partly my broken wrist and I mean I can’t go walking up the hills anymore and I used to, I didn’t do it a lot, perhaps just three or four long walks in the summer, well, I was doing bed and breakfast and I was doing, when I was doing evening meals I was pretty tired, you know. And then I was a home help for an old lady in [place]. She died when she was a hundred one and a half but she was in care for two or three years before that but I was her home help until she was well in her nineties and so doing long walks was not a daily possibility but, at the same time. And then dancing, Scottish country dancing, don’t speak to me about that. We’re all either dead or crippled now [laughs] and we used to meet in [place] so I couldn’t go very often, you know, but definitely slowed me down, yeah.
 
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Roger has changed his sporting activities as a result of his AF symptoms, playing bowls and croquet instead of tennis and badminton.

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Age at interview: 60
Sex: Male
Age at diagnosis: 50
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So it it’s had a big impact. Obviously, things like sport, I used to play tennis and badminton, it’s now bowls and croquet. I’ve always thought of taking those up but not until I was about eighty, not fifty [laughs]. So it has had a very debilitating effect but I try to look at what I can do, rather than what I can’t do. There’s no point in thinking too much about what I can’t do, because you could spend all day doing that and, at the end of the day, you’ve achieved nothing because you haven’t done anything.  Whereas if I think about what I can do and work my way around things, energetic thing followed by a less energetic, quiet things. I just try to mix and match things to fit in with the windows where I have got tired. Many times when I’m on the internet or typing e-mails, I know when I’m tired, even if I don’t feel tired, because the words just start coming off the screen in a jumble. I talk in a jumble as well. People laugh at me and they enjoy it but its frustrating [laughs].

Walking is it seems to be getting a bit harder. Now some of that is time of year. I’m aware that winter times, the coldness doesn’t help, headwinds don’t help, inclines, don’t like them a lot, I try and avoid them where possible.  Likewise travelling in something like the underground, London underground is difficult because I can’t live with crowds. I physically cannot keep up that speed and some parts of London underground, you just move through the tunnels as a mass. I couldn’t do it. I physically just could not keep up with them. So I try and, well, I have to avoid them. If I go up to [town], where the mainline station is, it’s easier because I can get out the train, stand by a column or something like this to let the crowd go by, wait until most of them have gone, then I can go.
Since his AF is worse when he is tired, David X initially restricted his driving to short, local journeys before deciding to give up driving altogether. After having an episode of AF at a motor racing event, Bob talked of how he was asked not to attend again if he was feeling unwell, as the organiser had found the responsibility of his AF ‘distressing’.
 

Glyn, the father of a special needs teenage son, explained how he can no longer drive alone on long trips.

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Age at interview: 64
Sex: Male
Age at diagnosis: 56
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And that could happen when you’re actually out on the street somewhere or actually driving a car, which is frightening, because you’re thinking to yourself, “Oh heck, I’d better pull over and stop.” [Laughs] and all the doctor told me to do, I said, “What am I supposed to do, doctor, if I get an AF and I’m driving a car.” He said, “Well.” He said, “[name].” He said, “Just pull over.” He said, “You’ll be fine.” He said, “Pull over for a couple of hours and stop until it goes off.” I said, “That’s all very well.” I said, “But I’ve got a special needs son in the back. I can’t very well stop with him for a couple of hours. He’s not toilet trained. I may have to take him to the service station and change him into another pad.” I said, “What do I do, you know?” “Oh well, you know. Just pull over.” He said, “Just pull over.” So what I do now, when I go on a long trip, I make sure my son or my daughter is with me, so if anything happens or they can take over the driving or they can drive so far and I can drive so far, you know.
Carin would like to visit her son who lives in Canada but is too scared of the long-haul flight required. She also experiences anxiety when travelling, but found the prescription of a ‘pill in the pocket’ medication a great help. She carries it with her at all times. Geoff explained how he had lost confidence in travel and hadn’t been abroad for five years as he ‘didn’t want to be too far from a hospital’. Eileen now travels first class on long haul flights because ‘it is easier to lay down if an attack comes on’. Yet while she has had no difficulty obtaining travel insurance, a number of people we spoke to had experienced problems. Ginny, who was recovering from a successful catheter ablation, was very disappointed when she realised she would need ‘twelve months free of any hospitalisation to get the insurance to go abroad to mountaineer’. Her ‘ultimate goal’ is to climb the Himalayas. When taking out travel insurance Brendan had to disclose his AF and pay an extra premium but felt this was affordable and not ‘unreasonable’.
 

Newly diagnosed with AF, Janet explained the problems she faced getting travel insurance.

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Age at interview: 74
Sex: Female
Age at diagnosis: 74
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The biggest, biggest problem I’m having is because of wanting to go on this holiday, when I told my insurance company that I’d got AF and in answering their questions, I said I was waiting for treatment so they decided that they wouldn’t insure me and they wouldn’t insure me for the angina or the osteoporosis, which was covered, and I’ve had this policy since last July. So that was a shock and a big disappointment really because it feels as though it’s making this into something much more major than I than I than I feel it is and that’s been a bit of a nightmare over the last two or three weeks to see whether anybody would actually accept me with this condition.
 

When Nuala was asked if AF restricted her life in any way she talked about the discrimination she’s faced with travel insurance.

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Age at interview: 60
Sex: Female
Age at diagnosis: 48
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Oh it’s very difficult to get health insurance. Very are very expensive and I went to Australia last year and I had health I had insurance taken out but they didn’t cover me for anything to do with the AF and I went. I thought, “Well, I’ll never have to go to a hospital anyhow. I’ll take a chance.” And I did. I don’t like doing that, however, when I want to go Europe I have the E one eleven card [now the European Health Insurance Card] and I think, because one of my daughters fell one time and they didn’t want any insurance. They just wanted the E one eleven. So I thought, well, I’ll have that with me as well. But it’s it has been very difficult to get, once you mention that you’ve had a cardioversion and I’ve been thinking about going along to the my MP to see if there’s anything they can do because it’s very, it’s very discriminatory. Even though I haven’t been in hospital for four years and the only time I was and I’m a very healthy person but getting all, I think a lot of them, the companies won’t insure.

Can you pay extra?

Some of them just said they wouldn’t they wouldn’t insure, so there wasn’t anybody that said, because even if I would have paid the extra, particularly going long haul holidays but that’s the only thing and saying that, it hasn’t stopped me travelling.
 
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Anne was disappointed when doctors told her to cancel a trip to rural India. She is keen to have a machine to self-monitor her warfarin levels.

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Age at interview: 71
Sex: Female
Age at diagnosis: 70
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[Laughs] well, I think they think that, you know, there aren’t any good doctors in India, which, you know, is not the case, but I think they thought that because I was… Because I wasn’t yet quite stable on the warfarin and I would I was going for three weeks, so I would probably have to find an AF clinic in Calcutta. I mean, you know, I could have done all that. My son-in-law would have made that easy for me.  And I think they weren’t sure what long haul would, whether that would trigger an attack. So if you had a severe attack on the journey, maybe, yes, because they’ve said there are, “Your attacks so far, have been self-limiting, but they aren’t always. Sometimes it just goes on and on and on and then it puts a huge strain on the heart, which is why we’d want you in hospital.” So if you were, you know, in the middle of a long flight. And it was going, I mean I don’t think they realised how gruelling it was going to be, because we were going to arrive at Bombay and then have to hang around for the whole day before we could get a flight to Calcutta. So it was going to be gruelling and, actually, the way I was feeling earlier on this autumn, it was a wise thing. 

In a sense there’s a feeling that doors have closed now, that I probably wouldn’t get in, round whole world medical insurance anymore, and I probably wouldn’t risk going long haul any more. So that’s, yes, that’s a door closing… but it’s not the end of the world by any means.  That you know, now that I will shortly buy this machine and have it under my control, then I’ll feel a great deal better, yeah, then I can, you know, I can take it with me when I go away and not have to worry about, you know, perhaps I ought to be finding myself an AF clinic in a in a foreign country or a strange city. I’ve got it with me. Yeah, I like to be in charge of myself really. That’s it.

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