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