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.

Age at interview 66

Gender Male

Age at diagnosis 59

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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 intentions 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.

Age at interview 69

Gender Male

Age at diagnosis 60

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

Age at interview 61

Gender Male

Age at diagnosis 50

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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.

Age at interview 63

Gender Male

Age at diagnosis 59

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Marianne can no longer go rambling but otherwise does not find her AF too much of a problem.

Age at interview 72

Gender Female

Age at diagnosis 54

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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.

Age at interview 69

Gender Female

Age at diagnosis 63

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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.

Age at interview 60

Gender Male

Age at diagnosis 50

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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.

Age at interview 64

Gender Male

Age at diagnosis 56

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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 5 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 “12 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.

Age at interview 74

Gender Female

Age at diagnosis 74

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

Age at interview 60

Gender Female

Age at diagnosis 48

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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.

Age at interview 71

Gender Female

Age at diagnosis 70

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Impact of atrial fibrillation on work

For some people we interviewed, having atrial fibrillation (AF) made little difference to their working lives. In jobs of a more sedentary nature (inactive), or...