Roger

Age at interview: 60

Age at diagnosis: 50

Brief Outline: Roger was diagnosed with AF ten years ago, and has not been able to work since due to his symptoms. He takes bisoprolol and warfarin and has had cardioversion and ablation procedures. He focuses on what he can do rather than what he cannot.

Background: Roger is married and worked as a building and facilities manager until he was diagnosed with AF. Ethnic background/nationality: White.

More about me...

In 1995 Roger had a health check at work where they found a slight heart problem, but he was fine to continue with normal life. He says he had always been in good health. However, in 2002 he noticed he had an irregular heartbeat and saw his GP. After being referred for tests, he was diagnosed with dilated cardiomyopathy (where the heart becomes weakened and enlarged, and it cannot pump blood efficiently). Roger said that it was really scary when he was diagnosed, as he was told that if his condition deteriorated he may need a heart transplant within 2-3 years.  Roger attended an expert patient programme, run by the NHS, about managing your own health. He found this very useful. Some time later, it was found that Roger’s dilated cardiomyopathy had cleared up (although his new cardiologist questioned whether he had been in fact misdiagnosed to start with). This was a huge relief to Roger, but he was then confirmed as having atrial fibrillation and atrial flutter.

Roger experiences a number of AF symptoms. He can feel breathless and he finds walking increasingly difficult, particularly uphill or in cold weather. He has palpitations but there does not seem to be a pattern to these. The biggest symptom Roger experiences is an intense fatigue, which he says is like he has been awake for days. He says he feels that he is in a body 20 years older than he actually is. Sometimes he feels so tired that he cannot concentrate or hold a conversation properly. He says he wakes up feeling tired, but does not want to stay in bed all day. He needs to have an hour-long nap after about three hours of being awake in the morning. He is disappointed that the fatigue has gradually got worse over time, and feels that it controls his life. He and his wife sometimes need to cancel plans if he feels unwell. One specialist has said that Roger has some symptoms of ME, which includes fatigue, but he has been told these cannot be treated until his AF is either cured or stabilised. Roger would like treatment now for these symptoms. Roger says he is a ‘worrier’ and feels that the psychological impact of AF should not be underestimated. He has lost confidence in travelling long distances, and has found travel insurance both more expensive and harder to get than before. 

Roger had 2 cardioversions (that worked on the day but did not last) with his previous cardiologist (who retired), and he then saw an electrophysiologist. He has had three ablations, which were also successful on the day but did not last. Roger says that he felt excited before the ablations that they might work, but disappointed when the results failed to last and his heart went back into AF. Roger had another cardioversion, which also did not last. In 2011 Roger had a fourth ablation using newer techniques, but unfortunately this did not last and his AF returned. He would be willing to have another ablation, but is not keen on a node ablation, which would mean he would need to rely on a pacemaker. Roger sees his cardiologist 3-4 times a year.

Roger has been on a number of medications, which have not worked for him. These include sotalol, flecainide, digoxin, amiodarone, verapamil, frumil, atenolol, ramipril and dronedarone. He currently takes bisoprolol, but wonders whether it is really making a difference to him. He also takes warfarin – his cardiologist took him off it and put him on aspirin for a year, but he had a mild TIA and was put back onto warfarin. Before, he had a stable INR reading, but since going back onto warfarin, he finds it is quite up and down. Roger finds that he bruises easily when taking warfarin.  Roger is aware of the development of some alternatives to warfarin, and would like the fact that regular blood tests are not needed with them. However, he is aware that there is no antidote to the new medications as there is with warfarin, and this is a concern for him. 

Roger has not been working for the past ten years due to his AF and receives half pay through an insurance policy operated by his employer. He has had a number of medicals; one undertaken by the insurance company said he is fit to return to work, and others have said he is not. He feels his future is uncertain and finds it stressful always being under assessment. He says he tries to focus on what he can do, not what he cannot do. He plays bowls and croquet, and is a member of his local heart support group and the Atrial Fibrillation Association. He thinks it is important to have a balance – to be able to talk to other people with AF, but not to spend all of his time with people talking about his condition. Roger tried meditation for relaxation, but decided to stop going when the focus became too religious for him. 

Roger thinks that people are not aware enough of AF. He feels that if people do have symptoms, they often put them down to something else, such as over-exercising or stress. He thinks that GPs should try and pick AF up by routinely checking pulses, or that perhaps checks should be offered in supermarkets during health check ‘rallies.’ Roger reminds relatives that people with AF do get tired and can be grumpy. He feels that it would be helpful if medical professionals told patients where they are on an AF scale of severity. Roger would like to feel he could get better control and more of his life back – he finds that having AF is a strain and a struggle. He feels that because AF is not outwardly visible, people find it hard to understand that sometimes he is struggling. He has a blue badge disability parking permit and receives the lowest rate of incapacity benefit. 

Interview held 30.1.12

Unable to work for ten years due to his AF, Roger described the impact of changes in government policy designed to get people off benefits.

I’ve got the situation with the Department of Work and Pensions, who want to put me back onto their work programme now. I’ve filled in a form saying exactly when I’m available, what I can do health wise and how it restricts me, but I’ve got to go through the trauma and the stress and anxiety of being messed around by what is really a bureaucratic exercise. Okay, they will get a lot of people off benefits. I can obviously see what they’re trying to do, and their objectives, but for people who are struggling with their life and I don’t like being trapped in this life at all, it’s very restricting.

Roger has changed his sporting activities as a result of his AF symptoms, playing bowls and croquet instead of tennis and badminton.

So it it’s had a big impact. Obviously, things like sport, I used to play tennis and badminton, it’s now bowls and croquet. I’ve always thought of taking those up but not until I was about eighty, not fifty [laughs]. So it has had a very debilitating effect but I try to look at what I can do, rather than what I can’t do. There’s no point in thinking too much about what I can’t do, because you could spend all day doing that and, at the end of the day, you’ve achieved nothing because you haven’t done anything.  Whereas if I think about what I can do and work my way around things, energetic thing followed by a less energetic, quiet things. I just try to mix and match things to fit in with the windows where I have got tired. Many times when I’m on the internet or typing e-mails, I know when I’m tired, even if I don’t feel tired, because the words just start coming off the screen in a jumble. I talk in a jumble as well. People laugh at me and they enjoy it but its frustrating [laughs].

Walking is it seems to be getting a bit harder. Now some of that is time of year. I’m aware that winter times, the coldness doesn’t help, headwinds don’t help, inclines, don’t like them a lot, I try and avoid them where possible.  Likewise travelling in something like the underground, London underground is difficult because I can’t live with crowds. I physically cannot keep up that speed and some parts of London underground, you just move through the tunnels as a mass. I couldn’t do it. I physically just could not keep up with them. So I try and, well, I have to avoid them. If I go up to [town], where the mainline station is, it’s easier because I can get out the train, stand by a column or something like this to let the crowd go by, wait until most of them have gone, then I can go.

Roger has had three ablations. Despite initial success in bringing the heart back into rhythm, they have all been unsuccessful long-term.

So then we started the long trawl of treatments and different medications in an attempt to control the fibrillation and flutter. I’d previously had at the onset of my conditions, two cardioversions with the previous cardiologist. They both worked on the day. One lasted twenty four hours and the other one lasted about ten days. With the new cardiologist, we started a new round and he referred me to an electrophysiologist, and to look at a form of ablation procedure, which was in but it was becoming more popular. I underwent two of those in 2005 and a third one in 2006. Once again, they were all successful on the day but they didn’t last. When I say successful, they were all successful in bringing the heart back into rhythm, and everything appeared fine but it takes a while to settle down. And what happens with an ablation is they burn out some electrical pathways. What happens in the following two to three months is some of those electrical pathways can reform as the scar tissue heals, so they reconnect. So you go back out of rhythm again.

Despite having had 3 unsuccessful ablations, Roger is not keen on having an AV-node ablation.

There is another option, which is a node ablation, where I would become a hundred per cent dependent on my pacemaker. Having researched this a little bit more, I find it’s known, or some people refer to it as the “big pill” in that it stops everything completely but it’s completely irreversible. So what it would amount to is the heart would no longer beat of its own accord. It’d be purely on a pacemaker basis. If the pacemaker did fail, which is everyone says they’re very reliable but it’s electronic, then that’s the end. But the other disadvantage I’m reading is that if there’s any further developments in the treatment of AF, I wouldn’t be able to undertake those because the node has gone, and I should say I’m feeling rather cold about that as an option now.

Roger’s cardiologist took him off warfarin and put him on aspirin which had fewer side effects. However, after having a TIA/minor stroke, Roger was put back on warfarin.

He said about it for probably for about six months to a year, “We can probably take you off warfarin and put you onto aspirin. It would be better for you than warfarin because of the potential side effects.” Although I must be honest, the only side effects I tended to get from warfarin was if I got any scratches from gardening, they tended to come up as heavy bruises, and in the summer I tend to wear long sleeve shirts because people wondered what on earth I’d been up to with these great big bruises on my arm but really, it wasn’t an issue for me to take warfarin. It was his decision really to take me off. I wasn’t pushing for it. 

Then I had my TIA. Then he put me back on it again. Whether I should have been taken off it in the first place is questionable I think because ironically, a friend of mine, who’s also got the atrial fib, he was taken off it by the same cardiologist. He had a TIA and was put back on it since then. Maybe there’s something more than just a pattern there. We were both if you like, downgraded from warfarin to aspirin, and then we both returned to warfarin.

Roger explained how people with AF can get irritable when they are tired.

When people get tired they also get ratty [laughs] and impatient and because it’s a normal time of day and their partner is in good health, the patient may well be actually right at their limit of endurance to that point of time in the day. And you don’t get a light come on to warn people you are not feeling well. You just bite, and that’s something that in the patient side of me is definitely affected, to what it used to be and it’s frustrating for me. It’s frustrating for the people around me and I will make people very aware of and, that it’s something to watch out for it, but it is something that, depending on how AF affects them, that’s the type of things that can happen. But they’re not being awkward and they’re not going to show anything outward but their head could be way out.