Geoff

Age at interview: 69

Age at diagnosis: 60

Brief Outline: After having food poisoning, Geoff developed IBS, which is thought to have possibly triggered his AF. He was unwell for ten years, has had four ablations, cardioversions and numerous medications. He is now feeling much better and regaining his confidence.

Background: Geoff works part time as a Finance Director and lives with his wife. He has two grown up children. Ethnic background/nationality: White British.

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Over ten years ago, Geoff felt that he couldn’t breathe whilst on holiday, which was later thought to be due to food poisoning. After this, he was unable to digest certain foods and limited what he ate. Two years later, he had a similar episode, but by this time had lost weight due to his restricted diet, and was referred for investigations of his digestive system. When he was in hospital, it was discovered that Geoff had AF, much to his surprise. It is now thought that Irritable Bowel Syndrome (and its effect on the central nervous system) triggered by the food poisoning on holiday, may have subsequently caused Geoff to develop AF. Geoff’s wife found information online that in America, a type of AF called vagal AF is thought to be linked to the digestive system, and particularly affected sporty people. The website suggested that beta blockers could make the condition permanent, and that flecainide was the most suitable medication. However, Geoff was told that this is not recognised in this country. Geoff was put onto warfarin, and over the next few years also tried atenolol, sotalol, amlopidine, ramipril, valsartan, perindopril, doxazosin, metoprolol and finally flecainide. Geoff also had a cardioversion, but was still getting palpitations. He had a catheter ablation, which did not work, and also continued to have high blood pressure at night and after meals. Later that year, Geoff had another unsuccessful ablation and another cardioversion, plus he tried a calcium channel blocker called diltiazem. Geoff was still experiencing side effects from the medications he was taking, particularly IBS type symptoms, and feeling twitchy and edgy. He had a third ablation the following year. Geoff was sure that there was a link between his digestive system and occurrences of AF. He had a fourth ablation which seemed to work, however playing tennis caused him to have an AF episode, and he needed cardioversion to return his heart to normal sinus rhythm. Geoff was still having problems with his digestion, and feeling unwell. On the suggestion of a neighbour who happened to be a nurse, he decided to cut out wheat from his diet (even though celiac tests previously had been negative). This seemed to have a positive effect – Geoff’s blood pressure reduced and he started to feel better. He was advised to come off of the beta blocker bisoprolol he was then taking, as it was giving him cold hands and feet. He tried verapamil instead, but this caused AF episodes, and so did dronedarone, so he returned to taking flecainide and bisoprolol. Geoff had a colonoscopy and endoscopy, and he found that after this he felt much better. He feels that it cleared his digestive system. Geoff also cut out alcohol and caffeine from his diet, and now takes warfarin and 2.5mg of bisoprolol. 

Geoff now wishes he had researched his condition more online, as he wonders whether changing his diet sooner may have prevented much of his AF and the need for treatment. He finds it frustrating that a possible link between his digestive and heart issues was not investigated further. He says that he was treated for the symptoms of AF, but that guidance over possible triggers were not provided. Geoff says that he lost confidence over the ten years that he had AF, and was afraid to go too far from home and the hospital that he trusted, having been there over twenty times for treatment for his AF. However, following his fourth ablation and changes to his diet, he is now feeling much better, and is regaining his confidence. Geoff worked part time when he was unwell, and feels that having a structure and purpose helped him psychologically to cope with his AF. Geoff feels that he had excellent NHS medical care and that it is important to have a GP who listens and appreciates the impact that AF can have on someone’s life. He found meeting other people with AF and sharing experiences at Atrial Fibrillation Association conferences a great help, as before that he felt isolated with no-one to discuss the condition, coping techniques or possible triggers with.   

Interview held 27.3.12

Work as a finance director has given Geoff structure in his life and helped him psychologically to adapt to AF. His boss has been very supportive.

The very fact of working has been very good psychologically, because getting up at a regular time and coming to work in a formal dress and mixing with other people has been very good for me, because I think, if I’d been at home being depressed about this situation I think I could have got much more ill, if you like. And, in fact, our GP says that very same thing. People once people retire they often get ill because they’ve lost the purpose, they’ve got no other interests and their status is their world at work. Now that in the slightest bit, doesn’t bother me. I’m not bothered about the status and because I’ve done so many things, it doesn’t worry me at all. It’s actually having the structure and getting up at the regular time, and having to make an effort to work with people in a normal situation. And even though I’ve often been feeling grotty and my chap I work for, who always has admired me for that at keeping going knowing that I feel really pretty lousy, has sort of kept me going. If I’d been at home, what would I have done? I’d have just been moping around. I might have gone to bed but what would it have achieved?

Although Geoff had become somewhat blasé about going to hospital when he had severe episodes of AF, it was always traumatic for his wife to witness.

If you break your leg and you know, you know, stupidly however you did it, you’ve broken it and it’s going to get better and you hope it’s going to get better. But in this case, it’s been the most frustrating thing ever really, and it’s been worrying for my wife in particular because she’s got to drive me off to the hospital, and she goes away for a week’s holiday or something worried about me in case I might get ill. And alright, neighbours and friends can take me to the hospital or I can ring for the ambulance, but it’s always been a worry for her as well. She doesn’t say so, but it is really. And it’s scarier for somebody seeing you when you’re wired up to all these monitors and oxygen and all this sort of stuff. I’ve got a bit blasé about it and I think, “Oh, well, you know, here we go again.”  But when somebody sees you in that state, well, she’s got used to it as well but when you’re in a resus department and people are trying to come round after heart attacks, it’s a pretty sort of hairy place to be.

Geoff is concerned about bleeding when taking warfarin but balances this against his risk of stroke.

The only thing about warfarin is yes, it’s I suppose it is a slight concern that if you do get injured and you start bleeding somewhere, it could be in a, I don’t know, car accident or anything, you know, it could be potentially fatal because you bleed so fast.  Unless people realise you, you know, you could be in trouble. But it’s all a question of risk and weighing the chances of getting a stroke or whatever. 

The warfarin is a nuisance because you bleed so easily, and you cut yourself, as I did the weekend, and I’ve still got a plaster on because I couldn’t stop the thing bleeding, and it was quite a deep cut. And I was thinking I’d have to go to A and E, dare I mention it, to try and get it sorted but it did eventually stop.  But that’s a slight worry, you’ve always got to take plasters round with you in case you cut yourself or something like that and it’s obviously a risk. 

After searching on an American website, Geoff was convinced he had ‘vagal atrial fibrillation’. His doctors in the UK did not recognise it.

But looking back over, could things have been done differently? There, having looked having got very little advice on it, when it first started, there’s a lot of data on American websites about a thing called vagal atrial fibrillation, which seems to relate to people that play sport like myself do lots of exercise, cycling and tennis and all these sort of things, and I seem to have all the symptoms associated with this so called vagal atrial fibrillation. The GP, the doctors here didn’t recognise it, but what the American conclusions were that if you had this beta-blockers were not a good thing to have, and it would probably make it worse and it might make it permanent. But it’s their view at the time, rightly or wrongly, and the but the medical people here didn’t think that, recognise that. And they said, “What you should have is flecainide.” 

For Geoff, chatting to people about their experiences at Atrial Fibrillation Association meetings was more useful than searching the internet.

I probably should have looked at the internet more but then you felt, well, it’s all sort of quacky ideas and perhaps a bit eccentric people putting stuff on, and was it really genuine stuff. So I didn’t tend to bother to look very much. The recent meetings we had at the Atrial Fibrillation Association, we’ve just had two and one about two months ago and one a year previously, and that was really useful and for the first time, I, yeah, probably the first time, I’ve met patients that had the same thing. And one of the great things about that is you can chat to people that have had the same experience, and you suddenly find you’re not alone and a lot of people are far worse than you, and a lot of people just, you know, go for it with extraordinary, foolhardy in some ways, it seemed to me, on occasions. Just going on holidays and then suddenly ending up in a heap on the floor in a hotel room in Paris, can’t speak a word of French, you’d have thought it was rather a crazy thing to do but they got through it and they survived and they’re there to tell the tale [laughs]. But, yeah, I think I thought I found that quite helpful, and then you could ask consultants there, not that I couldn’t talk to my own consultant, but there are other people that were independent of your own experience, you could ask questions. And yeah, I found that quite helpful.