Elisabeth X
Elisabeth is permanently in AF. Despite medical advice she took aspirin rather than warfarin for many years. She now takes dabigatran which she believes is a more efficient blood thinner. Other medications include digoxin, bisoprolol and candesarten.
A young mother with three small children, Elisabeth was absolutely terrified’ and feared she might die when her heart started thumping away very fast and very unevenly’ in her chest following a period of stress. Diagnosed with paroxysmal atrial fibrillation (AF) in 1967 at the age of 30, her condition has worsened over time and she is now permanently in AF. Her symptoms include breathlessness when going upstairs and tiredness.
Elisabeth describes atrial fibrillation as feeling like your heart is too big for your chest’; like there’s a lump or obstruction that you want to cough and get out of the way’. She has grown accustomed to the feeling over time and says she prefers her current state of permanent AF to the horrible jolt’ she felt in the past as her heart went into paroxysmal AF. She recalls changes in posture when lying down as possibly triggering these episodes.
Since her diagnosis, Elisabeth has been on a range of medications, including one drug which sent her into heart failure. None of these has stopped the AF, however, although her current regime of medications including digoxin, bisoprolol and candesarten give her a reasonably firm heart beat with which she can cope. She does not like being on beta-blockers and takes these at night to minimise the kind of glass wall that they put between you and the rest of the world’.
Elisabeth disagreed with her consultant on the question of anticoagulants for many years, preferring to take aspirin. Describing herself as someone who is very clumsy’ and accident prone’, she was concerned about the possibility of bleeding on warfarin and also believed that the need for regular blood tests would impact on her quality of life. With the arrival of new oral anticoagulants, however, she has decided to take dabigatran to minimise her risk of stroke. As she has got older she feels that she ought to be on a more efficient blood thinner than aspirin’. While concerned that the risk of bleeding can’t be controlled’ on dabigatran, she is relieved that she does not need to be constantly monitored’. Although there were discussions of cardiac ablation 10 years ago, Elisabeth rejected this option, believing that, at the time, the success rate was not in her favour. She now feels she is too old for the procedure.
Elisabeth’s GP lent her textbooks on AF after her diagnosis, but she has not sought out information through support groups or websites. With the exception of close family, she has been reluctant to talk to others about her condition, believing that people’s health things are pretty boring’. She has made a number of adaptations to her life because of AF. She almost never goes upstairs, prefers to walk on the flat, and uses lifts where possible because of her breathlessness.
Elisabeth describes a major change in attitude of the medical profession since her diagnosis. As a young woman keen to know more about her condition, she was treated by a cardiac consultant of the old school sort’ who was profoundly unhelpful’ in answering key questions such as Why has this happened to me? What’s going to happen? Am I going to die?’. Now, she couldn’t speak more highly of’ the support and understanding she receives from her local cardiac unit where she attends the arrhythmia clinic. There, in a supportive environment, patients are encouraged to take an interest in their health and to ask questions.
Based on her experience of AF over a long period, Elisabeth feels that good care for people with AF should include the best treatment possible, advice about medication and its side effects, support, encouragement to ask questions and express concerns, and information about the effect of AF on daily life. Her advice to people newly diagnosed with AF is You’re probably going to be alright. Don’t be scared. Find out as much as you can about why it’s happened to you’.