Paul

Age at interview: 57

Age at diagnosis: 55

Brief Outline:

Paul was diagnosed with AF after noticing a very high heart rate whilst exercising. His only symptom is a pain in his back during an episode of AF. He did take warfarin but now takes aspirin. He also takes a beta blocker called bisoprolol. He now has persistent AF.

Background:

Paul is a civil servant and married with one grown-up son. Ethnic background/nationality: White British.

More about me...

Paul exercises regularly and has always worn a heart rate monitor when doing so. He noticed he had a heart rate of 220-230 beats per minute and thought the machine must be broken. He tried another two machines, but kept getting a high heart rate reading, so he visited his GP and was diagnosed with atrial fibrillation. Paul had a number of blood tests to try and find out if there were any underlying causes or other conditions that could be causing the AF. All his results were fine, but Paul says that in a way he would have liked something treatable in order to give a reason for him getting AF. He wondered if his AF started because he was doing too much exercise by training for a marathon, but his GP did not think this would cause AF. Paul’s GP referred him to see a cardiologist, who he sees every 6 months. Paul says that at the time he was diagnosed he found himself questioning all of his habits. He says he was overweight, and regularly drank alcohol and coffee, plus had high blood pressure. Paul and his wife decided to change their lifestyles. He lost weight and cut alcohol and caffeine out of his diet completely. He says that he wanted to do something positive because of the AF, but felt disappointed when the changes did not stop the AF (but he does feel better generally for having made the changes). Paul also kept a diary of his AF episodes for a while, to see if he could work out any patterns or triggers.

 

A cardioversion was arranged for Paul and he was put on warfarin in preparation for the procedure, to reduce his risk of a blood clot. It took time to get his warfarin dose right. He needed a blood test every three days at the start, then once a week, and then every fortnight. His arm got very bruised and sore. He was also taking amiodarone, which put his heart back into its normal (sinus) rhythm, so he actually ended up not needing the cardioversion. Paul only took amiodarone for 12 months, as he was told that it could damage his liver if taken long term. He was then prescribed dronedarone instead, but this did not work for him. Paul had an ECG, an electrocardiogram, and wore a Holter monitor, and these tests showed that Paul did not have any underlying problems with his heart.

 

Paul does not have any classic symptoms of AF, except for a pain in his back when he is having an episode, but his GP and cardiologist have dismissed this. Paul is now in persistent AF. He says his biggest fear is having a stroke, and he takes a low dose of aspirin to reduce his risk. He also takes the beta blocker bisoprolol, which also lowers his blood pressure. Paul feels lucky that he does not have a lot of problems with his AF, as he realises that some people do. However, he says that he may not have symptoms, but he still has AF and is at an increased risk of stroke. He found it unhelpful when his cardiologist suggested that he might not want to take any medication at all. Paul says that his cardiologist is open and responds to his questions and concerns, but leaves him as the patient to make decisions. Sometimes Paul would like more direct advice from his cardiologist, as he can feel that he has to fill in the gaps and guess how his AF might be in the future. Paul looks up information on AF on the internet.

 

Paul had never heard of AF before he was diagnosed. He says that people know about the dangers of smoking for example, but not about AF, and thinks that awareness of the condition should be raised. He feels this would be helpful for individuals, but also for the NHS, as early awareness and treatment can prevent stroke. He wears a bracelet which has information relating to his condition engraved on it. He advises people with AF not to panic, and for family members to reassure them. He asks medical professionals to be sympathetic to patients’ fears and expectations, and to explain things fully. He feels they should also reassure the patient, but not treat them as if they are unable to understand or deal with certain information. Paul says he has often had his cardiologist appointments cancelled, and feels he could ‘slip through the net’ if he was not persistent in rearranging them.

Interview held 21.12.11

For a short time, Paul had fewer episodes of AF after he lost weight and stopped drinking alcohol and coffee. He was disappointed, however, when his AF became permanent.

It was me who made the choices after reading in depth a little bit on the on the web and literature provided. You know, there were some like NHS were, so I thought, well, if I do lose weight, it can’t do any harm and plus I do need to lose weight, you know. So I went I did lose and but the alcohol was another, if there was a trigger point there and it stopped me, bearing in mind I was I was in a different condition of AF then and so I was partially in, well, majority of the time, I was in sinus rhythm. So if alcohol or caffeine was one of the trigger points, then if I could get them out of my diet then it may well get rid of the forty per cent, you know, the times I was in AF. But that didn’t quite didn’t quite hold, but there was there was quite a few times I where I when I was, especially when I was, after sort of three months three or four months of being teetotal and caffeine free, I did feel that, “Oh, you know.” And there’d been less episodes and so I did feel that it was positive and now it’s in permanent I’ve sort of been, I’ve been disappointed in that respect.

Paul is unsure what the future holds for him. His doctors have never given him a prognosis but just knowing he has a heart condition causes him concern.

I don’t think that I’ve ever been sort of… I’ve never been given the information from the doctor or the cardiologist where they say, “Well, this is how it’ll go.” Yeah, nobody has actually said, you know, “It’ll become a permanent thing. It won’t get any better.” You know, I mean I’ve never really been given a diagnosis in that or prognosis of that. So it’s all been left for me to sort of ponder over how it’ll go, which again, is not perhaps the ideal because what you perceive the way things are may not be obviously, the way the way, you know, how it could be but yeah, I mean it is it is it’s worrying. I think you… everybody will have to worry about it. If you’ve got a condition of the heart, it’s automatically the one thing, “Oh my God, I’ve only got one of them and it’s.” You know anything goes wrong with it can be, you know, I think it can be quite frightening for quite a few people and I tend to try not to dwell on it too much but yeah, again, I just live each day and but I know I’ve got the condition. It’s not gone away and again I’ve got some important decisions to make probably further down the line but not at this moment in time.

Paul stopped taking warfarin after 9 months. His doctor told him he did not fit into the higher risk bracket for stroke.

The only thing I do fear for is from a stroke point of view. So I may well decide to move back onto warfarin as a precaution more than anything else because, you know, whilst I’m not too disabled from the AF, I think a stroke would be much more disabling than the AF for me at the moment. So I may well go back to that I think.

It was again, it it’s one of the recommendations that the doctor, the doctor said, “Well, you don’t fit into the higher risk bracket.” And as I was saying, the higher risk is normally deemed by somebody who is on normally, a very high blood pressure and or over sixty five. So I don’t actually meet that and, although my heart rate my blood pressure is slightly raised, not sufficiently enough for him, in his opinion, to move me onto the warfarin. Although he did give me that option, if I so wished to go back onto the warfarin, and the associated properly, you know, associated things that go with it like the regular blood tests and restricting your intake of different food stuffs and things like that.

Paul was frustrated by cancellation of appointments and the onus being on him to rebook.

There was a time when appointments were being booked for you. You received a letter to say, “Your appointment is on such and such a day.” And then what was happening after that, they changed the NHS, our local NHS here changed that system to where they would write to you nearer the time of your appointment. They would say, “You have an appointment in six months’ time. You ring in.” So the onus is back on to the patient, “And then you will be given a choice of various times and dates” and this would help with the patient picking a suitable time for them, convenient time for them and less time wasting that where people have missed appointments from the NHS point of view. Now whilst that sounds grand and you know very good in theory, in practice, what happens is, I’ve rung in last twice now and all I get is the one. It’s, “Oh, the only date we’ve got is this date.” And, of course, it’s no convenience for me because if it isn’t, then I don’t, you know, they haven’t got nothing else to offer me. So I find it very, it’s gone from… well… it’s supposedly making the thing better, simpler and easier. It’s just made it more inflexible and less good.

Paul was looking for advice when he tried to discuss information he had researched on the internet with his consultant. He felt he was seen as a ‘bit of a know all’.

I think they do, you sometimes feel that, “Oh, yeah, you know. Here we are. A know all. Bit of a know all here. Knows it all.” And I sometimes think they do feel that way, GP especially, not so much the cardiologist I think. And I would have thought they would have appreciated somebody who’s more read up read up on it than somebody who goes there completely not knowing anything about it I think. But they I do feel they feel a bit condescending to you. You know, I think they do feel, “Oh yeah, you know. Okay. No… I that’s my job. I’m telling you what, what things are.” But again, I go off I often go there armed with, you know, whatever and I tell them and say, “Well, look. This is what I’ve read. How much truth is there?” So I actually quiz them for the required answer.

I’ve come away from there thinking, sometimes I have thought, well, you know, I’m here for advice rather than, you know, him allowing me to do the driving, be in the driving seat. Because, at the end of the day, I’m not a hundred per cent certain and it’s only information that I’ve perhaps got from the internet I think, that’s enabled me to have a conversation with him and then sort of say, “Well, what about this and what about that?” But I don’t think he’s ever quite a hundred per cent coming to me and saying, “Well, there is this treatment. There is this treatment. There is possibly this.” 

Paul thinks many people may have AF without being aware of it because of the lack of advertising and posters in doctors’ surgeries.

There’s millions, I think probably there’s probably hundreds of thousands of people, thousands of people at least out there that will suffer from this condition and not even be aware of it because a) they don’t take their blood pressure they don’t take their pulse regularly. They perhaps don’t go and see their GP that regular unless there’s, you know, something else, got a condition and so I feel that, you know, it is it is a condition that’s not maybe, people aren’t aware of as much I think and it’s not published much either. I mean if you ask, probably anybody in the street what AF is, they’d probably, oh, they wouldn’t have a clue. 

You could put up posters in doctors’ surgeries, that sort of thing, which I’ve never seen one for AF I know. I mean I know I have received some from the Arrhythmia Alliance and they’ve sent me a few and I’ve put them up at my works. So from that perspective, you know, a bit of advertising and self-awareness I think, but from I think it’s very difficult and yet I can’t see it being advertised on the TV. I suppose again, its cost, its costing money again to put sort of NHS type bulletins out.