Chris X

Age at interview: 65

Age at diagnosis: 50

Brief Outline: Chris had years of AF attacks on medication that did not suit him. Two years ago, helped by the Atrial Fibrillation Association, he got referred to a specialist hospital and had an ablation. He now feels well. He takes flecainide and aspirin daily.

Background: Chris is married and retired from his job as an electronics engineer in the aerospace industry. Ethnic background/nationality: White British.

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Looking back, Chris remembers having attacks of a very fast heartbeat as a teenager, but it was in his late thirties that he really started to notice symptoms, particularly after exercise. In his late forties, Chris saw his GP and was referred to a local hospital for tests, but nothing was found and he was told that his symptoms were probably caused by stress. He now realises that family members may have had similar symptoms, and made his own DIY ECG machine to prove to the doctors that he had an irregular heartbeat. Chris says for him, an

episode of AF is like having something alive in your chest, banging and thumping.

Initially, the local cardiologist put him on amiodarone. Chris says that no alternatives were offered and that there was no discussion of other options. He experienced lots of side effects, such as problems with his sight, his skin went greyish in colour, he became sensitive to sunlight and his thyroid gland was affected. The side effects got him down. A cardiologist in a different hospital reviewed his case and changed his medication, but the new medication was not effective. Chris says he lost all confidence in the doctors at his local hospital, and when he was 55 he decided to retire due to the effects of work pressures and his health.

Chris then found the Atrial Fibrillation Association (AFA) online. He attended a conference and met an arrhythmia nurse there. She advised him to get referred to the hospital that she worked at, and Chris asked his GP to refer him under 'choose and book,' although his GP was not really aware that the system was available to use. The arrhythmia clinic changed his medication to flecainide, which worked far better for Chris, and he was offered an ablation (although he was initially worried about this). However, Chris says he later reached a 'tipping point' when he felt so unwell that he decided to have the ablation. Chris needed several cardioversions during the ablation as he kept going into AF during the procedure. After the ablation, Chris had a couple of AF episodes, missed heartbeats and sometimes a rapid pulse in the following six months, but 18 months on he now has few symptoms and is feeling much better. He now goes to the gym regularly, and has just started running again.

Chris feels so much better that he now wishes he had never retired. Chris says he is still very unhappy with the way he was dealt with at first at his local hospital. He feels that if he had been properly treated straight away, like he has been at the most recent hospital, he could have carried on working. Chris says he realises now that he may have been at risk of a stroke for probably ten years, but that this was overlooked.

Chris finds that certain foods can trigger AF and other arrhythmias. For him, these include caffeine, chocolate, cheese, and MSG in Chinese food. He currently takes a small dose of flecainide plus 75mg aspirin daily, and a beta blocker called bisoprolol to take in the event of a very fast heartbeat. Chris believes that, since he has had a successful ablation, his stroke risk is not as high as it was before. He does not take warfarin as he is unhappy with the risks of bleeding and the blood test monitoring required. He says he would not want to take the new alternatives to warfarin, as he feels such drugs have not been in use long enough yet to know the problems that they can cause, and it concerns him that, unlike warfarin, there is no antidote. Chris regularly visits the AFA online – he says he used to find it an excellent source of reassurance, but is now more likely to offer support to others.

Chris thinks that family doctors and the primary care system should focus much more on detecting AF, and feels that AF is not taken as seriously as some other heart conditions, even though it is known to increase the risk of having a serious stroke. He feels that not only would early diagnosis be more cost effective for the NHS (in terms of the potential consequences of treating strokes), but also better in terms of people's quality of life. Chris says that his delayed diagnosis, the uncertainty of AF, and feeling unwell really got him down. He has much more confidence now as he believes his AF is virtually cured. He has found the arrhythmia nurses at his hospital to be very supportive, and he can still contact them even though he has been discharged from the clinic. Chris advises people with AF not to despair, as AF can be successfully treated. He urges people to find out information from

an organisation such as the AFA, and to discuss the condition and treatment options with a specialist, preferably an electrophysiologist who specialises in heart rhythms. Chris advises people to be informed and aware patients and never be afraid to ask questions. He reminds family members, friends and employers to be understanding, and to appreciate that just because someone with AF looks fine on the outside, it does not mean that they are not feeling terrible and having difficulty coping on the inside.

Interview held 15.12.11

Chris X spoke of the difficulty of convincing his employers of the seriousness of his condition.

People look at you and you look very normal. You don’t you don’t necessarily look ill, and people don’t accept that you’ve got, what is actually, quite a serious heart problem. That applies to the workplace and to managers and even to company doctors. I’ve been to been round them all and a manager said to me, “Why are you having all this time off? You know, what’s? You know, this this isn’t acceptable.” And I said, “Because I’ve got this condition, this is what’s happening.” And it was someone that actually I’d, promoted above me because I didn’t want to do a managerial job and she said, “What’s wrong with you, Chris?” You know, “I can’t see anything wrong with you.” 
So there’s almost a disbelief, in some ways. And another manager said, “Well.” you know, “If you’ve got.” And I’ve got this in in my write-up I did for the AFA, you know, "if you if you fell off your chair and were passed out on the floor and an ambulance came and they carted you off on a stretcher then they’d believe you". You know, people who die from heart attacks get conference rooms named after them. You know, but there are a lot of other conditions and AF is one of them that don’t get properly recognised and allowed for in the workplace and I think that’s almost, in a sense, more important than family, in some ways. It’s certainly of equal weight, I would say. 

Chris X spoke of his regret at retiring early due to his AF.

I’m at the point now where I wish I’d never retired, and I mean if I had been referred before I retired, if I’d received appropriate medication before I retired, I needn’t have retired. I could have carried on doing the job that I was doing, and a job that I enjoyed doing as well. And now, actually, apart from anything else, financially we would have been a lot better off, because my final salary would have been higher and my numbers of years’ service would have been higher

Following a successful ablation procedure, Chris X decided not to carry on taking warfarin.

I am aware that it’s not necessarily a particularly nice thing to be on. It can cause, there are a number of side effects you are much more liable to bleed easily. It can cause things like gum bleeding and it can cause problems in your intestine as well. It has to be very tightly monitored in terms of whether it’s going to be any good or not. Most people do that with a weekly visit to the GP and well, for instance, going to this, I went to Europe AF this year a few months ago. There was [specialist name], who is a, the world, almost world expert on anti-coagulation and he said, you know, he was using the terms, “Well, you know, if I don’t really like a patient, then the first thing I’ll do is put them on warfarin.” [Laughs]. Because it’s just not a nice thing to be on.

Chris X advised people to carry on with their life, learn about AF, and seek reassurance from others.

Don’t panic. Don’t get depressed. It can be dealt with. Provided it’s looked at and looked after it’s not going to kill you. You can carry on your life, generally or you may have to shift back a gear a bit, but just go with it. It’s very different, when you’re a patient, to dealing with a patient. Often, as a patient, you can be much more accepting of it because it’s you. What other things would I tell them? I’d I would tell them to say, don’t take no as an answer, dig your heels in, be difficult if you have to be, make sure that you are dealt with in a proper way and that things are properly explained to you in terms of diagnosis, what the condition is, what options you have, what the side effects are of any medication and again, what alternatives there are. And I would particularly advise them to learn about the subject. Just become an intelligent patient. People react very differently to that. Some, like me, with a naturally nosy and inquisitive nature and a scientific mind want to want to know a lot more about it. You know, I find the more technical sessions at Europe AFA absolutely fascinating with the new research and so on. Some people they would say, “What? What are you doing that for? You know, just go to the doctor and take what he says.”

So it’s, I think it depends on individuals. I think one of the one of the main things, one of the things that I’m always doing on the AFA forum is reassuring people. I think it’s terribly important for people to have reassurance from people who’ve, if you like, been on the on the same path and it’s, tell them, be honest with them and say, “It can be a very bumpy road. It can be a very uncertain road.” But generally, after a period of time, things do get better.

Chris X’s manager found it difficult to accept the seriousness of his AF and the need for time off work.

People look at you and you look very normal. You don’t you don’t necessarily look ill, and people don’t accept that you’ve got, what is actually, quite a serious heart problem. That applies to the workplace and to managers and even to company doctors. I’ve been to been round them all and a manager said to me, “Why are you having all this time off? You know, what’s? You know, this this isn’t acceptable.” And I said, “Because I’ve got this condition, this is what’s happening.” And it was someone that actually I’d, promoted above me because I didn’t want to do a managerial job and she said, “What’s wrong with you, Chris?” You know, “I can’t see anything wrong with you.”