Atrial fibrillation

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. 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’. 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. 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. 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’. 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’.