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James

Age at interview: 63
Age at diagnosis: 59
Brief Outline: James was diagnosed with AF after he had a stroke which affected his right side. He had some irregular heartbeats a few weeks earlier but dismissed it. He has had one cardioversion and three ablations. He took warfarin before changing to rivaroxaban.
Background: James is a surveyor and lives with his wife. He has one grown-up child. Ethnic background/nationality: White British.

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One night, James’ wife had her head on his chest and heard his heart beating irregularly. They both laughed and dismissed it. A few weeks later, James had a stroke, and it was discovered that it was due to AF. His wife joined the Atrial Fibrillation Association (AFA) and researched the condition extensively. James had a cardioversion which worked for a short while, but then he went back into AF. After further research they chose an electrophysiologist to go and see. James has had three ablations, and says that he felt a bit better after each one. The third ablation ‘put his heart back in rhythm’. A flutter was detected after wearing a Holter monitor but he was told this is nothing to worry about. 

Although James’ heart is now back in rhythm he will remain on blood thinners for ‘the rest of my life’ because of his stroke risk. After his diagnosis he was initially prescribed warfarin but could not seem to get a stable INR reading. He found having blood tests every two weeks time-consuming and ‘a pain in the neck’. He was pleased when new anticoagulants were developed as an alternative to warfarin and has taken rivaroxaban since August 2013. While James believes his blood is ‘flowing fine at the moment’, when he had the stitches out after a hip operation, ‘blood started pouring out of my stitch holes’ and he was taken to hospital where the wound was dressed and the bleeding eventually stopped. While his medical team has not made the connection, it has crossed James’ mind that the bleeding may have been the result of rivaroxaban. 

Before his first ablation James took the antiarrhythmic medication amiodarone. He also took tablets for cholesterol but stopped these due to arthritis type symptoms. He now takes amlodipine for blood pressure, has cut down his alcohol intake, eats a balanced diet and keeps fit by going to the gym and cycling. 

James’ stroke affected his right side, and he had physiotherapy and rehabilitation to rebuild the strength in his arm and leg. He found that his arm was weak and he found it difficult to play golf. His coordination suffered, and he was also very tired for some time following the stroke. He says that his memory is not as good as it was before the stroke. James described his recovery as an ‘uphill struggle,’ but he stayed positive. Pleased with the care he received, James returned to work and says that his employer was very patient and understanding. However, he feels his employer ‘wrapped him in cotton wool’ and did not let him go back to his full duties.

James and his wife had never heard of AF, and would have taken his irregular heartbeat more seriously if they had done. He has given his GP posters about AF to put up in the surgery, but they never have been. James says that his GP and nurses take his blood pressure and say that his AF is fine. Even when he has reminded them that they need to take his pulse to check for AF, they have not done so. He believes that there is ignorance about AF, and that it is not taken seriously enough by some GPs or the public. He urges people to monitor their pulse. 

Interview held 3/02/12
Follow-up audio interview 29/01/15
 

James had a stroke due to undiagnosed AF and spoke of the ‘uphill struggle’ he had in regaining strength.

James had a stroke due to undiagnosed AF and spoke of the ‘uphill struggle’ he had in regaining strength.

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I remember I used to get so tired so quickly, which I just thought it was me. I didn’t realise and I had to build up strength in my hands.  My stroke went down this side, my right side and I had to build up strength in my hands and right leg and everything again. I was on a walking stick when I first came out of hospital and it was… I don’t think Jenny was working.

And everything was just an uphill struggle I suppose. I used to bounce a ball against the wall and catch it, stuff like that, because my coordination went all to pot and I tried playing golf again. I couldn’t even hit the ball off the tee and my right and my left hand went totally out of sync with each other [laughs]. But I’ve never been a brilliant golfer but it was really disappointing, but what else? What was the what was the question? I’ve forgotten what the question was.
 

James, who had a stroke due to AF, had three ablations and said he felt a little better after each one.

James, who had a stroke due to AF, had three ablations and said he felt a little better after each one.

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Well, when my… when they tried to kick-start my heart and it failed, we went to we were told to go and see this electrophysio physician, I think we were told. And so we decided, Jenny decided it was far best to go to find the best man we could, which we believe we did. But that’s not, I’m not decrying any other hospitals or anything like that, but it was him that told us that I was a suitable candidate for the ablation and it was… I mean we just I just put my faith in him and just carried on and went for it and said, “Yes.” And a few months later I called down for the operation, and I was so tired after my stroke and I was so tired until I had the first ablation. I felt much better. Second one I felt better still, and the third I really did feel quite good. I’m not saying I’m as fit as I was, but I’m a few years older now and I’m not quite as active with golf and things as I was because I’m too busy working, and I just haven’t got the energy to do both at the moment. But I intend to retire at the end of this year and then I can get back to my golf and things.
 

James did not know he had AF until he had a stroke, aged 59. He described his memories of the stroke and its impact on his life.

James did not know he had AF until he had a stroke, aged 59. He described his memories of the stroke and its impact on his life.

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Well, I, yes, had a stroke before I realised I had AF. On Saturday lunchtime, I believe it was, and I went upstairs to get changed to go and do some work in the garden, and I collapsed in a heap. I managed to attract Jenny and Jenny realised what had happened and called an ambulance and hey ho to hospital. I was fairly confused. I’ve vague memories of going into hospital and quite alarmed to hear I’d had a stroke. We struggled on. I came through and then it was realised I had AF and we weren’t sure what AF was and looked it up on the internet and found out.

And everything was just an uphill struggle I suppose. I used to bounce a ball against the wall and catch it, stuff like that, because my coordination went all to pot and I tried playing golf again. I couldn’t even hit the ball off the tee and my right and my left hand went totally out of sync with each other [laughs]. But I’ve never been a brilliant golfer but it was really disappointing, but what else? What was the what was the question? I’ve forgotten what the question was.
 

James finds fortnightly blood tests interfere with his work. He finds the queues frustrating.

James finds fortnightly blood tests interfere with his work. He finds the queues frustrating.

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One of the issues I have is my warfarin, getting maintaining my INR levels and they, warfarin just doesn’t seem to give a constant control of my INR, and so I’m forever going back to the hospital, back to the doctors to have a another test, so I’m going on a fortnightly basis now. Which does interfere with my work and it does annoy me that I try and get a first thing in the morning appointment, and I can’t have a first thing in the morning appointment because there’s loads of pensioners that are getting there at eight o’clock and you’re queuing behind them and it’s most frustrating.
 

James wonders whether rivaroxaban caused bleeding when he had the stitches out following a hip operation.

James wonders whether rivaroxaban caused bleeding when he had the stitches out following a hip operation.

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I had the stitches out and I started blood, started oozing through the stitches. In fact, it absolutely poured out of me, which caused me concern and that, and when I, if I go to the dentist I think to have a tooth out, I have to go to the hospital to have it out.

Do they take you off the rivaroxaban before surgery then?

They take me, they took me off the rivaroxaban, definitely took me off the rivaroxaban but it just, when they took the stitches out after my hip operation, it started pouring out of my, pouring out of the stitch holes.

And what did they do? What did they do about that?

They took, I was taken to, eventually, taken to [name of hospital], where they dressed it and it stopped bleeding eventually. It was old blood that poured out of my stitches. It wasn’t new blood.

Did they connect that at all to the rivaroxaban?

No, nobody connected to the rivaroxaban but I just, it’s just something that, something that’s crossed my mind might not, it might not be anything to do with my rivaroxaban.
 

James found that his cholesterol medication gave him arthritis-type symptoms in his wrists.

James found that his cholesterol medication gave him arthritis-type symptoms in his wrists.

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Well, I’m on warfarin, I’m on pills for my blood pressure, candesartan, and I was on cholesterol pills. Cholesterol pills gave me arthritis type feelings in my wrists, which was, it took some finding out what it was but that was I had cortisone injections. That didn’t do any good. I think it was they looked on the side effects on all the pills and discovered that it could it could cause that, so I stopped taking it, now it’s cleared up. I was having trouble even holding the steering wheel, which meant I was going to have to pack up work, which didn’t really please me.

Okay. So are you are you on anything for your cholesterol now?

I just take natural sterols, and watch what I eat, and I’m going to have another cholesterol test in a couple of weeks.
 

James, who had a stroke caused by AF, felt that GPs were either not taking AF sufficiently seriously or lacking in understanding of the condition.

James, who had a stroke caused by AF, felt that GPs were either not taking AF sufficiently seriously or lacking in understanding of the condition.

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The doctor should take your pulse as a regular matter of routine. And the AF Association handed out posters once, which I got put out at the surgery, doctor put them up in the surgery, ‘mighty pulse’, and it was telling doctors that they should listen to, check people’s pulses as a matter of routine. And he never put it up and when I went, I went to see him once. He started taking my blood pressure and he said, “Blood pressure is fine. Your AF’s under control.” I said, “It’s my pulse you should be checking.” And I needed I had to go for a routine sort of over sixties heart check at the centre the other day, health centre the other day and they took my blood pressure again. I said to them, I said, “My condition is for you to check my pulse.” And you tell them that, nobody still takes your pulse, which I think that’s ignorance on their part because they don’t understand the criteria, and I try to put the message across at my local surgery but it didn’t get across.
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