Chris Y

Age at interview: 64

Age at diagnosis: 62

Brief Outline: Chris first had symptoms of paroxysmal AF ten years ago, which gradually worsened. However, AF was not detected on an ECG until after Chris had a TIA two years ago. Chris takes warfarin, flecainide, bisoprolol and simvastatin. He exercises regularly.

Background: Chris lives with his wife and is a retired social housing manager. They have three grown-up children. Ethnic background: White British.

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Over ten years ago, Chris started to have palpitations every 4-6 weeks. He visited his GP and was referred to hospital where he was given a portable ECG monitor to wear for two weeks. However, Chris did not have any episodes of palpitations during this period. Chris was not recalled to have the ECG monitor again, and since his symptoms were infrequent, he carried on with life. After four years of experiencing the same frequency of palpitations, Chris found that his symptoms changed, becoming more recurrent and intrusive. He started to feel breathless, clammy and ‘worn out’, and would need to stop whatever he was doing when having an episode. Chris visited his GP and was referred to hospital for an ECG and ultrasound of his heart. As before, Chris was not experiencing symptoms at that time and the ECG came back as normal. The ultrasound looked at the structure of Chris’ heart, and he was told that it was healthy. He felt reassured to be told this, and felt a little as if he was overreacting about his symptoms, even though they continued.

Five years later, Chris went out jogging and got cold and wet in the rain. A few hours later, his arm went numb and he found it difficult to make sense when he spoke. He did not feel unwell or in any pain, and saw his GP a few days later. He now realises that he should have gone to A&E as he had in fact experienced a TIA (transient ischaemic attack or ‘mini stroke’). He was prescribed aspirin to reduce his risk of stroke and referred to see a consultant. A few days later, Chris woke up with palpitations and a severe headache, and thought he might die. He went to A&E and for the first time, AF was picked up on an ECG and diagnosed. Chris had MRI and CT scans, plus a lumbar puncture. The MRI scan showed that Chris had had several TIAs before, which he was unaware of. Chris was prescribed warfarin (instead of aspirin), bisoprolol, simvastatin, and later flecainide. His consultant discussed at length with colleagues whether Chris would benefit from flecainide, and also explained thoroughly the reasons for taking the medications. Chris found this gave him confidence. He had also started to keep a diary of his AF episodes, which the doctor found very helpful. He does not experience side effects from the medication, although his GP did reduce his dose of bisoprolol slightly due to already low blood pressure. Chris now takes 50mg of flecainide on empty stomach, 1.25mg of bisoprolol, 40 mg of simvastatin late at night, and warfarin.  He understands that he will need to continue taking these indefinitely. Chris carries an alert card to say that he takes warfarin, and also had a dog chain pendant made that he wears when he goes out, which includes his name, date of birth, blood group, and that he takes warfarin engraved on it. He finds the process of blood testing to monitor his INR efficient, and usually gets his results and any instructions to change his dose through the post. 

Chris says he had mixed feelings on receiving a diagnosis of AF. He was glad that it had finally been diagnosed and that he was prescribed medication to help with symptoms and stroke prevention, but also frustrated that opportunities had been missed to confirm he had AF, receive treatment, and potentially have avoided having TIAs. He now reflects that he should have pushed for further tests, and that the doctors should have followed up the symptoms he had presented to them with, as they were still there. Chris feels a little that he was dismissed and received ‘false reassurance’. 

Chris still has frequent episodes of AF, but they are not as severe or debilitating, meaning he can usually continue with what he is doing. He feels his AF is ‘under control’ and that he can live with the current situation. He feels reassured that his stroke risk is reduced by taking warfarin, although it did take time for his INR to become stable. Chris finds that going on holiday and consequently eating different food affects his INR. Getting cold and overeating are triggers for Chris’ AF, so he makes sure he keeps warm and now eats smaller portions throughout the day rather than one large meal. Chris’ only warning of an episode of AF is shortly before, when he feels as if the air has been withdrawn from his lungs. He sometimes wakes up in the night with AF. 

Chris’ father and grandfather both died at young ages of heart attacks, and he wonders whether they may have had AF. This has always motivated him to exercise and eat healthily. Chris now walks briskly instead of jogging, and finds swimming therapeutic. He says he is more careful now about activities he participates in, and makes sure he always has his medication with him (for example, in his hand luggage when going on holiday). AF has not affected his travel insurance premium. Chris found it useful to share his diagnosis with family and friends, and like Chris, they had never heard of AF. Chris has urged others to seek medical help if they have symptoms of AF or TIA. He has found a great deal of information about AF online. He cautions people to treat some information with caution, and to read widely and reach an individual conclusion. He has found reading people’s experiences of AF online helpful, and was surprised to discover how varied people’s experiences are.  

Chris advises people with AF to try not to panic when they are diagnosed with AF, and calls for understanding by family and friends if a person needs to withdraw from a situation when they are feeling unwell. He reminds medical professionals that reassurance is crucial for a person with AF, as they may be concerned that they may die, and also that some people may not be able to fully explain what they are experiencing. He urges doctors to follow up symptoms a patient presents with, and not to dismiss these if other tests are clear. Chris felt his AF was missed due to the clear ECG and ultrasound tests, even though he was still having symptoms. 

Interview held 7.8.12

Despite Chris Y experiencing symptoms for a decade, ECGs and an ultrasound of his heart came back clear. It was not until after he had a TIA (minor stoke) that he was diagnosed.

I sort of thought, “Well, you know, maybe it’s just me being a bit paranoid and maybe, you know, if it gets any worse or something I’ll do something about it.” Which is what I did in 2005, and it did get worse and they did, I don’t know if I mentioned it, but they did actually give me this recording device again, and again, the time that I had it, you know, [laughs] it didn’t work because I didn’t have any AF while I had it. 

And it wasn’t until I had the, after I’d had the TIA and I was I was on aspirin and I had that headache, and I went into A and E, that was the first time they’d actually got a recording of it. So it had just been, you know, sort of bad luck I suppose in some ways.

Chris Y found that a combination of flecainide and bisoprolol has helped reduce his symptoms.

Yes, I mean I can have it and I know I’ve got it, but I just carry on. I don’t, you know, it doesn’t, it’s not as debilitating as before when I was, [gasping] you know, really breathless, really clammy and any exertion was just too much. Now it’s, obviously the medication has taken those symptoms down to a level where I can I can function. Normally, I can function with it, with, I mean obviously, I don’t sort of jump about and running and doing things like that. I don’t get very active, but I can carry on normal every day activities without it causing me any problems, yeah.

Chris Y had symptoms of paroxysmal AF for ten years, but it was only after his TIA/minor stroke that AF was caught on an ECG and diagnosed.

And it wasn’t until I had the, after I’d had the TIA and I was I was on aspirin and I had that headache, and I went into A and E, that was the first time they’d actually got a recording of it. So it had just been, you know, sort of bad luck I suppose in some ways. But I mean I was, I never had any sort of reassurance or any or anything from anyone. I was, you know, I just didn’t get the feedback that I was sort of, not expecting but I thought, “Well, obviously there’s nothing wrong”, when perhaps there was. And one interesting thing that came out, when they did the MRI scan, the consultant picked up that I’d had several TIAs. They could see they could see it on the on the scan that I’d had, probably not as severe as I’d had that day in in March 2010 when I had, when I had when I had the TIA, but I’d obviously had some minor ones before. So if I’d had an MRI scan perhaps a bit earlier, that could have been picked up and I was, you know, more, you know, it was a greater possibility that I might have, you know, something that could have been medicated, if you like, earlier on. 

Chris Y had a ‘dog tag’ made to alert people to his AF in an emergency.

Well, this is what I made for myself [shows dog tag on chain around neck], which is like a dog tag, which has my name, date of birth, blood group and that I’m on warfarin, so that if I’m involved in an accident or something, then the medics who get to me can, hopefully, save my life [laughs]. Ah, but at least they’re aware that I’m taking warfarin. I have an alert card in my in my wallet that I carry around, but I thought this was probably a bit more immediate, you know, and so I’ve got, you know, I wear this whenever I go out.

Since his TIA/minor stroke, Chris Y has adjusted his exercise routine.

Well, I discussed at some length, actually, sort of exercise with my GP and said that I’ve always been I’ve always played a lot of sport and, you know, like to like to sort of keep active and, you know, the TIA happened after I’d been out jogging and I was got cold and all the rest of it. And, you know, he suggested, you know, things like swimming, very good. I do enjoy swimming. I don’t go swimming as often as I’d like to but I do like swimming and I find that a very sort of therapeutic sport anyway. And we discussed walking rather, it’s not really a stroll that I do. It’s quite a vigorous walk, you know. It makes your, the heart is working, you know, over what it would normally do. I do about four, four and a third miles an hour, which is, you know, quite a brisk walk. But exercise, as I say, is something I did discuss and swimming and walking were the two that we thought would be best sort of thing, because I can do it regularly, particularly now I’m retired. I, you now, I can do that anytime.

Chris Y felt more confident about his treatment after his cardiologist discussed his case with colleagues before prescribing medication.

Well, they, the consultant explained that he he’d talked to colleagues and, you know, they he presented them with, you know, what he knew about me and what I’d told him, and what all the tests and everything else he’d done, the scan results and all the rest of it. So they’d obviously looked at me with all the information to hand and decided that that was the best course of treatment for me. And that was something I felt, you know, very good about because they’d obviously, you know, looked at all the symptoms, all the results, the whole thing. They had the whole story and they decided that this was an appropriate medication to put me on. So that felt, I felt very good about that because you know, I was encouraged a) and b) I felt confident in taking that medication.

Chris Y stressed the importance of comparing information found on other websites as they could sometimes have conflicting information.

Well, I think the NHS stuff online is very good. There’s quite a few others and I usually, well, I’ve printed a lot off. I’ve got a big box file where I’ve printed stuff off, and then you sort of cross reference the different sources. Sometimes they agree, sometimes they disagree and you can you can sort of make your own judgements really about what’s going on. 

Chris Y kept a diary detailing his episodes of AF, which his GP found useful in monitoring his condition.

I had actually, before then, started to keep a diary of when the when I was, well, the arrhythmia, which subsequently became known as atrial fibrillation, so I’d put the time it started, time it stopped every day, and I found that was very useful and my GP said, “That’s really useful” and I gave him a copy and all the rest of it and wrote it all out. So, you know, if anyone else is going through that sort of thing, a diary really is very, very useful.