Glyn was diagnosed with AF 8 years ago when he developed a rapid heartbeat a couple of months after a hernia operation. Since then he has been on a range of antiarrhythmic medications including flecainide, disopyramide and amiodarone, none of which has successfully controlled his AF long term. Glyn stopped taking amiodarone 3 months ago after being on the medication for a year and experiencing side effects including ‘horrible nightmares, a dry mouth, and a terrible dry cough’. The drug also made him more susceptible to direct sunlight.
Last year, in an attempt to regulate his heartbeat, Glyn had 2 unsuccessful catheter ablations. These operations, lasting 6 hours, were carried out without anaesthetic and Glyn describes them as ‘very, very painful’. He then had a pacemaker fitted and a further ablation which surgeons hoped would ‘cure the problem’. Unfortunately he is still getting palpitations which last up to 3 hours in the morning leaving him feeling exhausted and dizzy. For Glyn, surgery has made his condition ‘worse, not better’. He believes that the longer you have AF the harder it is to treat and is frustrated that it took so long before a decision was made to try surgical procedures to treat his condition.
With a family history of stroke, Glyn is only too aware of his increased risk of having a stroke with AF. He was prescribed warfarin a year ago after raising the issue with his cardiologist. He also takes a cholesterol tablet every night to ‘keep his arteries clear’ and prevent a heart attack. To further minimise his risk of stroke, he eats a low fat diet of mainly white meat and fish, has given up alcohol, and has never smoked.
AF has had a big impact on Glyn, affecting his private life as well as his work life. He has felt anxious and depressed and unable to plan a long term future with confidence. Having a special needs teenage son has added to his concerns about how he will cope. Despite wanting to work, he has been on sick leave for 15 months. As he says, ‘you can’t go into work when you’ve got a pulse of 120, 130’. Yet he admits it’s hard to get this across to authorities. Recently called to attend a job assessment at his local job centre, Glyn has asked for a letter from his GP to explain why it is impossible for him to work.
Glyn is critical of the care he has received since his diagnosis. The 10 minute consultation time in clinics has been inadequate to ‘take on board’ his worries and concerns, and he describes the after care following his operations as ‘very poor’. The 6 month gap between his last operation and a follow-up appointment with his cardiologist has left him feeling concerned and insecure, and attempts to phone the hospital for advice have proven unsatisfactory. Glyn has been left in ‘no man’s land’, unsure what his options are and facing an uncertain future.
Interview held 13/03/12
Feeling constantly tired and exhausted, Glyn described how he was unable to continue working as a cleaner.
Feeling constantly tired and exhausted, Glyn described how he was unable to continue working as a cleaner.
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Eventually, I found a job of part time in one of the stores in [city]. It was just a morning cleaner really, four hours a day, eight until twelve, that’s all I was doing. But as I say, even that I was finding hard, the last couple of months I was there because I used to work say an hour, an hour and a half and I’d have to sit down again because I’d feel exhausted. That’s one of the symptoms of AF unfortunately. You feel exhausted and tired all the time through it, you know, because what happens, when you get an attack of AF, it takes so much out of you because your heart is a natural pacemaker, trying to get it back into sync. When it does go back into sinus node it means that, you know, it’s take so, it’s just like running up a hill. You run up a very steep hill, you feel tired and breathless. It feels exactly the same. You know, you feel so exhausted after it, after an attack, you know.
Glyn suspects a link between anaesthetics and AF. He believes an operation for a burst appendix may have triggered his AF.
Glyn suspects a link between anaesthetics and AF. He believes an operation for a burst appendix may have triggered his AF.
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I think that there was a definite link because it shows that maybe, some people’s cases, when you have what happens, when you have an operation and you have anaesthetic, with the anaesthetic is adrenalin, that’s right, I couldn’t think of it. You get adrenalin pumped into you as well. So when you when you recover from the operation, that adrenalin wakes you up. Now it may start off as well, it may start your heart racing so I think that’s something to do with it but as I say, when I, before I had the operation, I explained that, before I had my hernia operation as well, I explained that to the doctor and he said, “No, you’ll be fine, [name]. You’ll be fine.” But, of course, he didn’t realise that I’d probably had it back in nineteen ninety after my burst appendix, so perhaps he didn’t realise that anaesthetic or adrenalin that actually starts off AF. Another thing is as well, I mentioned it too, is that too much adrenalin in your body can cause you to have AF. Too much anxiety, depression in your body can cause you to have AF. So, you know, it’s a lot of a lot of things could start you having AF, you know, without you even thinking about it, you know.
On long term sick leave from his job as a cleaner, Glyn spoke of the difficulties of convincing the authorities that he was unfit for work.
On long term sick leave from his job as a cleaner, Glyn spoke of the difficulties of convincing the authorities that he was unfit for work.
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I’ve been on sick note for about fifteen months. In fact, I’ve had a letter this week saying I’ve got to go down to the to the local job centre next Monday afternoon for a job assessment. But the problem with that is, I mean I could go down there, if I don’t get any AF, how are they going to know why I don’t go to work and I’ve got to explain to them with a doctor’s assessment, I’ve got to get a letter from my GP, explain what the AF is and what is has condition on my life. But it’s hard to explain to them. I get up in the morning and I may have a two or three hour attack and as long as I have AF, I can’t go into work with it. You can’t work when you’ve got a pulse of a hundred and twenty, hundred and thirty. It’s impossible. You can’t work with it, as I say, so you can’t do anything, so you can’t go into work. So it’s not as if I don’t want to go into work. I want to work. I’d rather go into work than be stuck in the house all day, but it’s no point in me going into work if I, after about half an hour, I’ve got to sit down in complete exhaustion, dizzy spells, tiredness and palpitations. There’s just no point. I’m wasting my time going in and they’re wasting their time having me there, you know, to be quite honest.
Unable to work, Glyn spoke of the effect that AF has had on his quality of life.
Unable to work, Glyn spoke of the effect that AF has had on his quality of life.
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I’ve lost thousands of pounds in wages because I haven’t been able to work and it has it has a detrimental effect on your on your lifestyle because if you’re getting less money in the household every day, or every week rather or every month even, you get less money to spend on bills, less money to spend on your on the luxuries in life and so basically, you’re restricted to what you can do, you know what I mean. It has that much of an effect on your life, you know.
Glyn, the father of a special needs teenage son, explained how he can no longer drive alone on long trips.
Glyn, the father of a special needs teenage son, explained how he can no longer drive alone on long trips.
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And that could happen when you’re actually out on the street somewhere or actually driving a car, which is frightening, because you’re thinking to yourself, “Oh heck, I’d better pull over and stop.” [Laughs] and all the doctor told me to do, I said, “What am I supposed to do, doctor, if I get an AF and I’m driving a car.” He said, “Well.” He said, “[name].” He said, “Just pull over.” He said, “You’ll be fine.” He said, “Pull over for a couple of hours and stop until it goes off.” I said, “That’s all very well.” I said, “But I’ve got a special needs son in the back. I can’t very well stop with him for a couple of hours. He’s not toilet trained. I may have to take him to the service station and change him into another pad.” I said, “What do I do, you know?” “Oh well, you know. Just pull over.” He said, “Just pull over.” So what I do now, when I go on a long trip, I make sure my son or my daughter is with me, so if anything happens or they can take over the driving or they can drive so far and I can drive so far, you know.
Glyn tried antidepressants without success. Cognitive behavioural therapy (CBT) helped him ‘a certain amount’ to control his anxiety and panic attacks.
Glyn tried antidepressants without success. Cognitive behavioural therapy (CBT) helped him ‘a certain amount’ to control his anxiety and panic attacks.
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I did try anti-depressant tablets but there again, they didn’t work and so I thought, well, there is another way, which is called cognitive treatment, which means they, talking therapies they call that, which they have you into a course. They tell you how best to control a panic attack, how best to control anxiety and depression yourself. It’s telling you your mind is a strong tool and you should use your mind more. In other words, if you feel as though you’re going into anxiety and a panic mode, tell yourself and tell yourself you can’t do something, tell yourself you can do something. And then that, hopefully, within about five or ten minutes of telling yourself and going forward, these attacks tend to fritter out and die down a bit. But if you get more anxious, you get more palpitations. So, you know, what they try to do is try to reassure you that it’s a common thing to have, these attacks but don’t let it dictate your life, what you do, what you don’t do, you know.
It has helped a certain amount, yes. You learn to control the anxiety and depression a lot better than you did before yes, it gives you some tools to fight these things, if you know what I mean. Tablets are not always the answer.
Glyn described the side effects he experienced while on amiodarone.
Glyn described the side effects he experienced while on amiodarone.
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Amiodarone, I was on that from twelve months, from December two thousand ten until December two thousand and eleven and then, as I say, in the middle of December last year, they decided for me to, [coughs] excuse me, to come off it. You know, so as I say, the only thing with that is it takes six months to go through your system.
So are you still getting side effects?
I’m still getting side effects from amiodarone. The worst side effects are nightmares, dry mouth and also there’s, the worst side effect of all with amiodarone, is you’ve got to watch direct sunlight. If direct sunlight gets on your arms or your legs or your face you can you can burn your skin. So you be very, very careful when you go out in the sun that you’re well wrapped up, in fact, you know, which I was last summer and I was well you call it creamed up, as they said, you know, with sun cream every time. I got arms, legs, head everywhere, neck everything, even the top of my head, I was putting it on as well.
Glyn, who has had two unsuccessful ablations after medication failed to control his AF, described his experience.
Glyn, who has had two unsuccessful ablations after medication failed to control his AF, described his experience.
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Back in May of two thousand and ten, sorry, two thousand and eleven I had the first of my ablations. Six hour*, horrible operation where you’re awake the whole time and it’s very, very painful because they’re putting rods in your groin up to your heart and it’s burning trying to stop the electrical signals from causing the atrial fibrillation, which in my case failed the first time. And so three months later they decided to start all over again in August and do the same. Again, another painful six hour operation and again, it failed again.
[*Note: Glyn’s experience is unusual as this procedure does not usually take this long].
Glyn, who had a pacemaker fitted after two failed ablations, described his recovery from the operation.
Glyn, who had a pacemaker fitted after two failed ablations, described his recovery from the operation.
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It did make me housebound for the first six weeks after the pacemaker because they told me I couldn’t lift my arm up above my head and I couldn’t stretch out because there was new leads put in and what they were concerned about, if I stretched or put my hand above my head, I would have moved the leads that was coming from my pacemaker to the heart. They put leads in you see and that would obviously, then maybe occurred of another operation, which I didn’t want to go through.
So I didn’t… I sort of very, you know, if someone had bumped into your shoulder or something like that because it was very sore and still a bit sore now actually. They said it could take another three months because they’ve cut into a lot of muscle on your chest wall and, therefore, your muscle takes a while to mend, if you like, to get back into normal.
Glyn spoke of the frustration of brief appointments and felt that doctors did not always listen to his concerns.
Glyn spoke of the frustration of brief appointments and felt that doctors did not always listen to his concerns.
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I think [sighs] as I say, because when you go and see them, you’re only restricted to time to ten minutes per appointment, you tend to think that they’re, you say so much and then you might not say everything you want to say and then you’re rushed outside again after ten minutes and you don’t fully, you don’t say everything you want to say to them, like you feel so frustrated, you know. They don’t listen sometimes to what you’ve got to say or they don’t take on board your worries and concerns, you know. Or they don’t take on board your, when I told when I told the surgeon once about my son all he said was, “Oh well, I’m only here to treat your atrial fibrillation. Your son is your responsibility.” I said, “I know that.” I said, “But don’t you understand AF has a big impact on that, you know, and the way you treat me with AF, if it if it doesn’t work, I’m stuck.” I just can’t, you know, I just can’t seem to get the point across, AF is such a big factor in my life that it’s affecting my private life as well as my work life, you know.
Rather than being treated as a name and a number, Glyn believes people’s views should be taken into account.
Rather than being treated as a name and a number, Glyn believes people’s views should be taken into account.
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Well, I don’t think they take on board peoples’ individual views, to be quite honest with you. They’ve got they’ve got their way of treating AF and that’s the end of it, you know. You’re sort of a minor detail to them, you know, just a name and number. I know they can’t afford to get emotionally involved with your case. I know you’re just looked upon as just a one case and a name and a number but, at the end of the day, you feel as though you’re just a robot, you know. You’re not being treated properly, you know. You’re not being treated with the respect you deserve, you know.
