Elisabeth X

Age at interview: 74

Age at diagnosis: 30

Brief Outline: 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.

Background: Elisabeth worked in the voluntary sector as an editor before her retirement. She is married with 3 adult children. Ethnic background/nationality: White British.

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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’.

Elisabeth X, in permanent AF, described her symptoms as a ‘cardiac neurosis’.

Just this awful, I don’t know, feeling that your heart, it sort of almost feels as if it’s far too big for your chest. And it’s making this terrible, terrible and it’s very frightening. I mean the phrase cardiac neurosis comes to mind because you really do think you’re going to die. It’s horrid. You know, I would say to anyone who’s starting out with AF, it will feel horrible. It will feel really scary.
 
I suppose I get used to it in the way that anyone who had a false leg or a, they’d be used to it but, at the same time, they’d know it was there wouldn’t they. I am used to it, yes, because I’ve had it for so long but I know it’s there. And sometimes it makes me start to cough because I, there’s this funny sensation as if there’s a lump there or an obstruction and so you want to cough and get it out of the way. But it isn’t an obstruction. It’s your own heart misbehaving.

Elisabeth X wonders whether her AF has shortened her life.

Well, I mean I suppose I do think about the risk of stroke, yes… And I do sometimes think that, you know, the faster a creature’s heart beats, the shorter its life and I do sometimes think, well, mine has been beating very fast for a long time. So has that shortened my life? But that’s a question I have not been able to find an answer to and I’d quite like one.

Elisabeth X realised that she could not control her AF without medication.

I used to try and, in fact, what I didn’t say, which was quite a feature of the early my early days with AF, that I had the kind of feeling that I could control it if only I did it better. So from time to time, I would stop all the medication, just like that. “I can manage this. I can I can deal with this,” I would say to myself. “I’m all right. I don’t need it.” And then, well, I don’t know how long but then it would all start up again and I’d realise that actually it wasn’t within my control. It kind of felt as though it was but it wasn’t.

Elisabeth X felt ‘detached from life’ on beta-blockers.

I don’t like being on the beta-blocker very much and it’s all right at the amount I’m on now and I take it at night to minimise the effect on, because I don’t like that kind of glass wall that beta-blockers put between you and the rest of the world.

In what way? How do they, what do you mean by that?

Well, a friend of mine, who used to take them for, when he was facing stressful situations, he called them, ‘don’t care a damn pills’ and that’s what it's like. It’s as if you’re detached from. From life and I don’t like that. I’d rather feel.

After resisting pressure to go on warfarin for years, Elisabeth X finally decided to go on dabigatran to reduce her risk of stroke.

I have, because I’ve been in AF, I’ve had AF for such a long time, since I was thirty, for a very long time, there’s been a pressure on me to go onto warfarin, which I did not want to do, mainly for quality of life, the fact that you have to, you know, are constantly having blood tests to make sure that all is well. And so I kept on saying, “All right, I’ll do it when I’m sixty.” Or, “I’ll do it when I’m sixty five, I’ll.” And I went on and on like this, putting off the decision being persuaded by not just the consultants at the cardiology unit but also by my daughters, who are doctors, that my risk of stroke, etcetera, etcetera, that I ought to be on a more effective blood thinner than aspirin. And I, finally, because, eventually, they have produced a blood thinner, which is not warfarin, that’s dabigatran, I finally agreed last, I think it was some time last autumn that I would go onto dabigatran. 

And the advantage of taking a blood thinner, as opposed to not taking one at all, I suppose are that the older you get, the more likely, in AF, of your risk of stroke and that is that is quite a, you know, that is quite a serious risk anyway because, obviously, your risk goes up as you get older. So yeah, I mean I can see that it was sensible to go onto it.

Elisabeth X hopes that an antidote will be developed for the new anticoagulants.

I gather is that they’re working on an antidote but that would be I think that would probably make acceptable to a lot of people to feel that, should there be a situation where, for instance, they need immediate surgery, which is another problem. I had to have an endoscopy a couple of weeks ago for a totally unrelated problem and, because I had to stop the dabigatran for seventy two hours before I could undergo the surgery. And had had that been an emergency operation, it would have been a problem right.

Elisabeth X spoke of the empathy and understanding felt by her consultant after he himself had experienced AF.

Anything to do with the heart is immensely troubling because it always feels as though it’s a matter of life and death because it is, in a way. I mean I can’t remember now which consultant it was but a consultant here in [city] once said to me that he had had a bout of AF and he now realised how utterly terrifying it can be and it had made him feel quite differently towards patients. Because I would imagine they see someone with a healthy heart comes in, it’s beating irregularly but there’s nothing else wrong with it, so what are you worried about? You’re fine. But once he had experienced this for himself, he could understand how terrifying it is and it is quite difficult to get that across to somebody who hasn’t had it.

Diagnosed over 30 years ago, Elisabeth X recalled how hard it was to get information about AF. She talked about the books her GP suggested she read.

I mean in those days people didn’t talk about this. There wasn’t anybody I could ask about it. I remember my GP, [coughs] who was a very nice and sympathetic man but not one to talk about feelings, coming to see me once because I spent quite a lot of time in bed to start with. And coming with a whole armful of books and jumping, dropping them on my bed and with pieces of paper marking passages and said, “Read these and then you’ll know as much as I do.” 

And also sitting on my bed and explaining that we all had to die of something and it was likelihood it would either be cancer, a stroke or a heart something and really, if you added these three up maybe a heart thing was, [laughs]. It wasn’t exactly reassuring but I think he meant to be reassuring. 

I mean the things that he brought me were these massive great text books [laughs] that nobody in their right mind would want to read.