Richard

Richard believes he had paroxysmal AF on and off for years before his diagnosis. Now in permanent AF, he takes warfarin and verapamil. He leads a normal life but wonders whether it is his AF, medication or age which causes tiredness and lack of energy.

As an oil worker with a multinational company, Richard has spent much of his life overseas. Looking back, he suspects that a doctor in Indonesia was right when he diagnosed an irregular heartbeat and prescribed medication 25 years ago. At the time, however, Richard was not convinced and regular medical checks throughout his working life failed to detect a problem. It was not until 4 years ago when he saw his doctor after feeling a bit dizzy and tired’ that he was diagnosed with paroxysmal AF. He was prescribed warfarin and atenolol.

Richard has found being on warfarin absolutely no problem’ and believes it a tried and trusted’ method of minimising his stroke risk. Warfarin is something that’s measured and you understand if it’s working’. Now semi-retired, he is not inconvenienced by regular blood tests and although he has noticed that cuts can take slightly longer to clot, he has not experienced any unusual bleeding or bruising.

He is less sure, however, about taking beta-blockers which, unlike warfarin, are not monitored. Given the range of medications available to treat AF, he wonders how doctors know whether the one they have prescribed is working or whether it is the best one’ for the patient. In an attempt to establish whether atenolol was managing his condition, he experimented by varying the dosage. He found a very straight line relationship’ between the dose and the regularity of his heartbeat. As someone who monitors his health carefully, Richard also took his pulse regularly, recording the readings. He noticed a pattern of one day in four when his heartbeat was irregular. A keen jogger, he also found that when he had an episode of AF he was sometimes able to shock’ his heart rate back to normal by jogging.

Richard hoped his cardiologist would find his analysis and feedback useful but was disappointed at his lack of interest. He believes that cardiologists see patients with many more serious ailments than his and that it is a case of this is what you do and that’s that’ for patients with AF. He was surprised that he did not have regular follow ups with his cardiologist after diagnosis but rather was put under the care of his GP. He admits that given the reading he has done and his experience of the illness that he probably knows more than my GP’. He would like to see a feedback loop through the patients and back to the doctor’ so that doctors can learn from patient experience. He would also like to see more posters in doctors surgeries to increase public awareness of AF, and more pulse checking to identify people with the condition.

In 2010 Richard’s AF became permanent over a period of 3-4 days, with a heart rate of 85bpm. A year later, feeling tired and lacking in energy and not convinced the atenolol was helping his condition, he went back to his cardiologist and was prescribed verapamil securon, a calcium channel blocker. He remains on verapamil, though is unsure whether this has made any difference. He wonders whether his tiredness is because of his condition, his medication, or just getting older.

Today Richard leads a perfectly normal life’ with AF and beyond taking medication and having a blood check every 8 weeks you wouldn’t know I had it’.

Interview held 13/09/12

Richard, who has kept detailed records of his condition, believes that health professionals need to accept feedback from patients when it is offered.

Age at interview 56

Gender Male

Age at diagnosis 52

And I’ve shown them all this stuff and they’re not interested. You know, they just think, oh, you know. I thought naively these guys would be interested to see somebody who had kept such detailed records for such a long time, which can’t be that often, you know, they can’t have all that that data very often but they’re not. I mean they really just, I mean I guess, you know, this guy is a sort of, I don’t know if hes a top cardiologist, but hes a very experienced cardiologist and, you know, they see people with so many more serious ailments than I have. So for me it was probably, he just thought, well, it’s just another guy with AF and, you know, this is what you do and that’s that.

I don’t know how they keep up to date because there seems to be not much of a feedback loop through the patients and back to the doctor. You know, they treat something and hopefully it works and then they never hear whether it worked or not and so I would hope the sorts of things that you’re gathering and that other people gather and data and information somehow gets back to them in a simplified form that they can, you know, read in a short time because I know they’re busy.

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Although Richard was first diagnosed with AF as an expat working overseas, he didn’t trust the doctor’s diagnosis or take the prescribed medication.

Age at interview 56

Gender Male

Age at diagnosis 52

I went to see a local doctor, can’t remember why, I didn’t feel well or something and he said I had an irregular heartbeat all the way back then and I remember that and didn’t, you know, didn’t think anything of it. And he prescribed a whole bunch of drugs that I knew nothing about and he was a local doctor and I wasn’t all that comfortable with that so I actually went to see one of the other oil companies, had their own ex-pat doctors, so I went to see him and he checked me over and said, Theres nothing wrong with you and it’s just as well you didn’t take those pills. Because he said I had a, which I do have, quite low blood pressure, well, I do have low blood pressure so a lot of these pills would lower it further.

And he said, I remember him vividly saying that if I’d have taken these I probably would have keeled over because it would have been so low. But I suspect that that first doctor was right because he did do an ECG and he showed me the stuff but I just wasn’t very confident of the technique and everything because the things kept falling off, I remember, and I was thinking, Well, I, you know. I wasn’t about to accept anything so serious.

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Richard was unsure whether his tiredness was part of ageing or related to his AF.

Age at interview 56

Gender Male

Age at diagnosis 52

It’s hard to know if it’s the disease or, you know, because it because it all happened round when I was about fifty, now I’m fifty six. You know, that age anyway things are changing without a doubt and you’re not very sure if it’s just a natural you know, consequence of being fifty odd, and most people, you know, things seem to change a bit around there, I would say, not everybody but a lot, or is it because of the disease. And all I can say is I’m definitely more tired than I was before.

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Richard found that he was no longer able to take medication such as ibuprofen or aspirin when he developed a bad back.

Age at interview 56

Gender Male

Age at diagnosis 52

The main hassle is there are some medications you can’t take particularly ibruprofen and those sort of things, which would have been very helpful for my back. And I used to, when I had back problems years ago, I used to take them and they were quite good.

Can’t have aspirin but can have you can have paracetamol for sort of headaches, that kind of thing but I always used to take aspirin before and aspirin always seemed to work better for me than any of that stuff. So it it’s things like, you know, I probably would have, given the back thing, I would have been trying ibuprofen, glucosamine and things like that, just that kind of thing. And I can’t do that, any of that.

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Richard thought he would see his consultant more frequently after his diagnosis. He finds that his own knowledge of his condition exceeds that of his GP.

Age at interview 56

Gender Male

Age at diagnosis 52

I naively thought, Well, I’ll be getting a, once a year I’ll go in for some kind of check-up. And that, you don’t get that. Theres none of that unless you push it and then when you go and see the GP, the treatment appears to be fine, you get diagnosed, you get the medication agreed with him and then from then on your GP essentially, is the guy that you see. But you kind of feel like, when you do a bit of reading and you’ve actually got the illness or disease or whatever you call it, you kind of feel quickly that you probably know more than the GP does really. I mean when you think what hes got to deal with, you know, that one illness, you know, he runs rapidly out of his knowledge zone.

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