Dave

Age at interview: 61

Age at diagnosis: 50

Brief Outline: Diagnosed with AF 11 years ago after an episode while scuba diving, Dave describes his symptoms as ‘fairly mild’. Declining treatment with beta blockers, warfarin and cardioversion, he takes aspirin to minimise stroke risk.

Background: Dave is a consultant engineer who frequently works abroad. He is divorced with three adult children. Ethnic background/nationality: White British.

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A keen scuba diver, Dave’s first encounter with AF came after he emerged from the sea having used a lot of oxygen, feeling dizzy, and ‘looking pretty grey and horrible’. Although he didn’t (and still doesn’t) have any palpitations, he found walking back to the car a real struggle and felt ‘absolutely exhausted’. Having identified an irregular pulse, his GP referred him for an ECG. He was subsequently diagnosed with AF and offered cardioversion to restore sinus rhythm. Unconvinced that this would be effective long-term, however, and reluctant to take warfarin because of the ‘serious inconvenience’ of blood tests on his work as a consultant engineer, Dave decided against treatment, preferring instead to take a daily aspirin. About five years ago, on the advice of his GP, he briefly tried beta blockers but discontinued use when he became dizzy from low blood pressure.

One of the contributory factors to AF is excess alcohol and Dave feels there may be a link in his case. Although he gave up drinking 18 years ago, he admits that he did ‘abuse alcohol for a considerable period of time’. His consultant also suggested a possible genetic link: two of Dave’s grandparents had heart problems which may or may not have been AF.

Dave’s experience with health care professionals in treating his AF has been sporadic and at times contentious. He has not seen his GP for the past 4-5 years, citing the difficulty of getting an appointment when working abroad. He admits that he ‘really ought to go back and have another check-up’ to see if his condition has worsened. Dave had to wait almost 8 months before seeing a heart consultant after his GP ‘forgot to send the [referral] letter off’, and an outpatient appointment for an ECG was cancelled because of the ‘flu epidemic. He wonders whether he would have been seen faster and ‘treated a lot better’ if his condition were considered more serious. He believes his decision not to go ahead with cardioversion after his diagnosis was seen by the consultant as ‘an affront to his professionalism’. He wonders whether he may have agreed to a procedure which in his case he felt was ‘absolutely pointless and highly unlikely to work’ if he were less assertive and self-confident. He urges health professionals not ‘to force treatments unless absolutely necessary’.

Today Dave takes a daily dose of aspirin to minimise his risk of stroke. Lack of advice on dosage, however, meant that he took 300mg of aspirin daily for over 2 years until a GP friend told him to take 75mg to avoid possible damage to his stomach. He may consider taking statins in the future. Although unable to go scuba diving which he really misses, having to declare his condition on travel insurance, and feeling breathless when exerting himself for any length of time, Dave refuses to let AF ‘take over my life’. While avoiding strenuous activities such as playing squash, badminton and running, he keeps fit by cycling and walking. He no longer smokes or drinks alcohol, has very little coffee, and eats a healthy diet. He advises others diagnosed with AF to ‘continue doing everything you’ve done before and only stop doing things once the body is saying ‘Enough’s enough, sunshine’.

Interview held 27/12/11

Dave first sensed something was wrong while scuba diving when he found himself running out of oxygen.

I was scuba diving and I’d only just started doing it and a colleague, my buddy, when I came out of the water for the second time in one day when we’d done two dives he said I looked pretty horrible and I was grey and whatever. And we’d had to come out early because I was using so much oxygen and I’d also noticed that, when I stood up quickly, I got dizzy very, very well, more frequently than I’d, you know normally. I mean normally when you stand up quickly you can get dizzy but it was happening almost all the time if I stood up very quickly.

Dave spoke of his friends’ reaction to his breathlessness.

I get breathless and that’s the main symptom. I just don’t have enough oxygen to do what I want to do I think it’s the thing it is. Even simple things like walking and trying to make a phone call I’ve learned that people think I’m about to collapse on them, friends listening to me when I’m walking making a phone call. Even on a piece of flat ground, it sounds as though I’m out of breath and whatever even though actually, to me it feels it feels okay. It’s that sort of, something I’m used to.

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

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.

Dave explained why he refused cardioversion.

He [consultant] did offer to stick electrodes in my heart and try and knock it back into sinus rhythm. But when I asked about, you know, “What’s the chances of it staying like that?” I found out that because it was more than three months since I’d had the onset and because I was over forty five, the chances of it even reverting to normal rhythm were less than fifty per cent and then, even if it did revert, there was a very strong probability, probably about ninety per cent it was going to go back to atrial fibrillation within two years.

Dave described his exercise dilemma.

And so again, if I exert myself for any length of time then or I tend not to exert myself for any length of time these days anyway. I run for buses occasionally and then it takes, it can take about five minutes before my breath goes back to normal. But I don’t go out of my way to exercise anymore because I was told not to exercise too much but not, it’s one of those funny things, you’re told not to stop exercising but don’t overdo it and trying to get that balance right is sometimes can be a bit difficult. So instead I go cycling, I walk but I don’t do any, I don’t run unless I unless I have to, like running for a bus.

Dave’s doctor offered him cardioversion to treat his AF. He seemed irritated when Dave refused.

He [consultant] did offer to stick electrodes in my heart and try and knock it back into sinus rhythm. But when I asked about, you know, “What’s the chances of it staying like that?” I found out that because it was more than three months since I’d had the onset and because I was over forty five, the chances of it even reverting to normal rhythm were less than fifty per cent and then, even if it did revert, there was a very strong probability, probably about ninety per cent it was going to go back to atrial fibrillation within two years. So given that the cure involved warfarin and having to have my blood tested almost daily, whilst they checked I’d got the warfarin dose right, this was going to be seriously inconvenient because I was always travelling around a lot as a consultant engineer and the chances of it actually doing anything useful seemed so remote that I just said, “No. No, thank you very much.” 

No, no as I say, the consultant seemed to be more he seemed to be almost irritated or upset about the fact that I was refusing the let him poke me. But it’s one of the things, you know, sometimes consultants seem to be more concerned with their profession than their patients but, yeah, anyway.

Dave, who describes his AF as mild, advised doctors not to ‘force treatments unless absolutely necessary’.

Make sure that you know, not force not force the standard treatment. You know, just because I’ve got atrial fibrillation doesn’t mean I’ve got to have beta-blockers. It’s actually, you know, presume there’s gradations of intensity or severity of AF and therefore, you need a different [coughs] excuse me, a different regime, treatment regime for each level or whatever. 

But yeah it’s just tell me if it’s going to get worse, what the symptoms will be when it gets worse so I know what to look out for and also actually, don’t force, don’t try and force treatments unless it’s absolutely necessary. Obviously, if I’m dying, then I would be quite interested but if I’m not dying and I’m actually managing to live a, you know, a reasonably contented lifestyle then let me get on with it. Thank you very much.