Bob

Age at interview: 66

Age at diagnosis: 59

Brief Outline: Bob was diagnosed with AF after 9 years of symptoms. Bob had 2 unsuccessful ablations, but a third ablation worked and Bob does not currently have AF. He still takes warfarin.

Background: Bob is married and has two grown up sons. He is retired from the banking sector, but is still keenly involved in motorsport. Ethnic background/nationality: White British.

More about me...

Bob’s AF went undiagnosed for around 9 years, and he was told instead that he was suffering from stress and stomach problems. When Bob did have episodes of AF, he found that by the time he reached the hospital and was given an ECG, everything had settled down. Bob was only diagnosed ‘by chance’ as he moved house and his new GP had personal experience of AF. Bob says there was not much information on AF available when he was diagnosed, but it is now much better.

 

Bob had never heard of AF before he was diagnosed. He says his first question was ‘Am I going to die?’ but he was reassured by his GP, who talked to him about treatments and medication. He was referred for tests at his local hospital, where he had an ECG and was monitored walking on treadmill. These tests showed that his heart was working well. Bob wore an ‘event recorder’ for 2 weeks, which monitored his heart 24 hours a day, and the results of this showed that he had AF.

 

Bob says that for him, an episode of AF felt like ‘furry animals running in your chest.’ He describes feeling light-headed and his heart racing. Bob remembers finding really frightening at first when he did not know what was causing the symptoms. He used to feel ‘completely drained’ after an episode, but also sometimes found it hard to sleep. He would not have any warning signs of an AF episode. Bob tried to carry on with everyday life, but sometimes just had to go and lie down because he felt so ill, and admits to being grumpy at times. He remembers that he used to take his blood pressure and pulse a lot. One day the

machine was broken, and he realised that he felt better when not monitoring himself all the time.

 

Bob was given a beta blocker called atenolol to take, but he felt like he was doing everything in slow motion, and they made him wheezy. He was also given flecainide as a ‘pill in the pocket’ medication, to take when he had an episode of AF. Bob also had a TOE (transoesophageal echocardiogram), where a camera was put down his throat to view his heart from the inside. Bob was offered a procedure called ablation. Ablation means making small burns in the heart tissue, so that it is unable to conduct electrical impulses. This is done using a long wire threaded into the heart. Once the tissue is treated in this way it forms a scar, which means that abnormal impulses can no longer get through. Bob was reluctant to have an ablation, but when the frequency of Bob’s AF episodes increased, he felt so unwell that he decided to have the procedure. Bob’s first ablation did not work; his second ablation worked for 9 months and then the AF returned; his third ablation was successful and Bob is now not experiencing AF (he prefers not to say that he is cured). After the final ablation, Bob chose to stay on warfarin. He says that it does not cause him any problems and reduces his risk of stroke. He is wary of newer drugs as he feels they have not been around long enough to know what effects they can have. Bob says there are certain medications and foods that you cannot have when taking warfarin, such as ibuprofen or cranberry juice.

 

Bob says that it is important to find out information when you are diagnosed with AF. He says he ‘became a partner’ with his cardiologist in his treatment decisions. He says it can be useful to take someone to appointments with you if you can, as it can be hard to ask questions and take things in when you are feeling unwell. Bob was put in touch with an arrhythmia nurse at the hospital, who he could phone or email with any worries - he found this very useful. Bob is a member of the Atrial Fibrillation Association, and found the information on their website very helpful. He also found the forum a great source of support, and still goes on to offer support to others. He says that people have a range of symptoms, and they impact upon people’s lives differently.

 

Because AF is not outwardly visible, Bob says that some people found his symptoms hard to understand. He reminds family, friends, employers and doctors that the psychological and emotional sides of AF are also very real, and should not be ignored. He says that AF is a long journey, but not to panic, and believes that a positive attitude is very important.

Interview held 28.12.11

Bob felt helpless when he realised how much his AF diagnosis affected his son.

And, apparently, my eldest son, [son’s name], took me to [town] to catch a train to London on one of the occasions I was going up for treatment and when he came home, he was in tears and he said to my wife, “I took Dad to the station. I put him on the train and I didn’t know whether I’d ever see him again.” And I hadn’t, I didn’t know about that until I saw the film being made and I hadn’t realised how much it must have affected them - but I know that there were occasions when it used to make me very grouchy and bad tempered, when it was happening, because I felt so helpless.

Bob, who had two unsuccessful ablations, was delighted when the third attempt proved successful.

I had my first ablation in 2006. Unfortunately, as is often the case with the first ablation, it didn’t do the trick. It in fact, in in some respects, it made the situation slightly worse.

We did a second ablation in, just after Easter in 2007 and that was very good. It was very positive. I came out of hospital thinking, “That’s it. I’m cured.” And for about eight or nine months, I had virtually no AF at all, a few little bumps and grinds occasionally, little bit of flutter but no debilitating atrial fibrillation. And then, towards the end of 2007 I started to get occasional times when I have a little bit of an attack and, I was still under the [general hospital]. So we talked about it and, in fact, I had a third ablation, I think it must now have been early 2009 and, since then, I’m delighted to say I’ve not had atrial fibrillation at all. 

So it is quite common that it sometimes takes two or three ablations to actually get on top of it. But it’s a very effective for those people that can have it.

But we did discuss it with the medical profession. I discussed it with my GP, and my wife and I discussed it at home and, as I said, there comes a point when you think, okay, there is a risk, but as much risk feeling ill like this all the time and having had one ablation, I never thought twice about having a second or third, and if I’d have needed it, I’d have gone for a fourth as well.

Bob decided to continue taking warfarin despite a successful ablation.

I chose to continue taking warfarin because I consider that just because I don’t have AF now, doesn’t mean that it doesn’t still contribute a risk, and there is some evidence that having had atrial fibrillation, it can create changes within inside the atria, that the scarring that’s created by this constantly writhing rather than pumping rhythmically, can create a situation where the surface area can make the blood flow more slowly, and it could still contribute to clotting. So since warfarin causes me no problems, I mean I work on the engines, I work in the garden, I do I cut myself, okay, I might leak for a bit but I stick a plaster on and it stops. And I’m on such a regular dose, my INR varies so little, I only get checked about every three months now because every time I go it’s just where it was before. So it causes me no problem, so why take the additional risk of possibly having a stroke when it’s not causing me a problem. And it, to me, it’s that simple.

A consultant Bob met at a conference told him that some GPs are afraid to prescribe warfarin because of the risk of internal bleeding. Bob believes you have to make up your own mind.

There is a chap, who I’ve heard at various conferences, and who I have met not on a social level but at conferences and had long conversations with. Again, for professional reasons, I won’t give you his name but he is the top man on anti-coagulation and stroke risk in the country, in my opinion, and he is always been of the opinion that most GPs are more frightened of prescribing warfarin than the patients are of taking it, because one of the risks of warfarin is internal bleeding. 

So you have to balance the risk of a gastro-intestinal bleed against the risk of an ischaemic stroke, where a blood clot gets into your brain and knocks out half your brain. Now, the reality is that there is less risk than doctors consider, and I think it’s probably true that if a doctor has had a patient who’s had a gastro-intestinal bleed and been rushed to hospital, he’s less likely to prescribe warfarin for the next two or three months, but if he had a patient who’d had a stroke he wouldn’t be more likely to prescribe warfarin. So one has to take an educated look at it and make your own mind up.

Bob found learning about AF from literature available through the Atrial Fibrillation Association helped him communicate with his doctors.

With the Atrial Fibrillation Association and the amount of literature that is available, fact sheets that they provide most people that come into the journey, and AF is a journey, will be able to find out things that I could only have dreamt about finding out. I mean I’ve made it my business to learn as much as I can, because if you are able to communicate with the doctors that are treating you and discuss the problems, you become partners in your treatment. If you don’t do that, you’re just a customer, and that way you don’t get the same results. I found that by being intelligent or by asking intelligent questions, for the most part, I get good responses, and consequently, able to discover why things have happened.

Bob is an active member of a forum set up by the Atrial Fibrillation Association, advising people newly diagnosed with AF. The forum has been a source of mutual support and friendship.

The Atrial Fibrillation Association was formed in 2007 and they set up a forum. It’s not a, it’s through the yahoo groups but you can only join as a member of the Atrial Fibrillation Association, which costs nothing, but you have to go through them. 

When I started on the forum we were up to I think five hundred posts, or something like that, four hundred and eighty, five hundred posts. We’re now into the ten thousand something or other, and I think we’ve probably got, I don’t know how many members we’ve got at the moment. There’s a there’s a hard core of about a dozen of us that look on there most days and every week there’s somebody new coming on saying, “I’ve just been diagnosed. I’m terrified. What’s going to happen? Can somebody help?” And it is important, I’ve I consider it important to me to look on there every day, sometimes two or three times a day, because having been there I know what they feel like, and I don’t want them to feel like that. So if I can go on and say, “Yeah, okay. This is the situation. I have greatest sympathy for you. I’ve been there. I do know where you’re coming from, but try and relax.” And signpost them, look on the forum. Look on the main website, and there is a fact sheet on anti-coagulation. There is a fact sheet on ablation. There’s a fact sheet on drugs. There’s so much information there now that wasn’t available when I was first started out on the journey, and it’s not all technical. It’s not all there’s a there’s a certain amount of banter and innuendo between some of us old stagers that are on there, there’s a sort of hard core. A lot of them I’ve met at conferences and we’re quite good friends and occasionally, there’s one lady if we’re up in London for a meeting or something, we’ll have dinner in the evening before we go our separate ways. We all, there’s a there’s a group of us known as the pink carnation gang who meet up at the conferences and wear a pink carnation to be recognised, and always try and sit together and so on and so forth and it’s nice. It’s a sort of mutual supporting group. We care about each other, which is important.

Bob believes that doctors need to recognise the emotional impact of AF and provide psychological care.

They need to know how mentally damaging it can be emotionally. AF and the way it affects quality of life, the outdated feeling that AF is a benign nuisance must be binned. We’ve got to get the message across that it’s debilitating. It’s emotionally damaging. Regardless of any stroke risk or anything like that, the fact is, people that have AF go through a very bad very dark place. Eventually, most people come out of it and start to understand what the situation is, but this was one of the things that I spent a lot of time in the committees that I’ve been involved with, trying to make sure that people, who are making the decisions, recognise that physical care is one thing, but the psychological care is also important. And I think the care makers, shall we say, the people who are running the NHS need to recognise that it is not just a physical condition. It creates very bad mental conditions with it, and it can cause long term depression and, as I’ve intimated, almost agoraphobia, that people are terrified to go out and once that happens, you’ve lost them from the workplace. And supporting those people and getting them back into a good quality of life and back into the workplace is going to save money in the long run.