Noel first started having strong palpitations three years ago, usually at night, which would wake him up. He saw his GP and although the GP noticed an irregular heartbeat, the GP was not concerned. When his palpitations continued, and Noel found he was getting breathless when out running, he saw a different GP. An ECG showed that he did not have an irregular heartbeat (Noel now realises that is because he had paroxysmal AF). However, Noel carried on getting palpitations and running became more difficult for him, so he saw another GP. An ECG then showed that Noel had AF, and he was put on aspirin to reduce his stroke risk. The GP was concerned and proactive’, and referred Noel to see a consultant, but an appointment took three months to come through. During this time, Noel felt very frightened and afraid to do much, and panicked if he had palpitations. Noel felt he needed to do his own research to learn what AF was, and read a great deal of information on the internet. He cut down on caffeine and alcohol, and tried to remain calm.

When Noel saw the consultant, he was told that they would attempt a cardioversion. Noel was prescribed warfarin in preparation for the procedure, and felt down about this. He says that he had worked hard at keeping healthy all his life, eating well and exercising, and felt that taking warfarin was something that he had not expected something like this until he was older. Noel was not taking any antiarrhythmic or beta blocker medication. After the cardioversion, Noel felt a burning sensation on his chest. The cardioversion lasted for a week, and he was then disappointed to go back into AF. Noel says that he did not have any follow-up appointments, and it relied on him seeing his GP to be referred back to see the consultant. When he did see the consultant again, he was told that a further cardioversion could be carried out, but would most probably fail. Noel was prescribed digoxin and bisoprolol (however Noel decided not to take the digoxin after reading that it was more suited to inactive patients). Noel says that the purposes of the medications were not explained to him. He was alarmed when the consultant told him to get used to taking warfarin as it was important to reduce his risk of stroke. This was the first time that a medical professional had highlighted fully the risk of stroke related to AF.

Noel felt very isolated and down needing to take medication long-term, and felt that no-one could help him. He spent more time on the internet looking for hope of a cure for AF. He found the Atrial Fibrillation Association (AFA) and found the people there very supportive. They gave him a list of AF specialists in the country, and Noel says he felt empowered again. He decided to see a specialist privately. The electrophysiologist told him that his stroke risk under the CHADS2 system was 0, and moved him from warfarin to aspirin. Noel was very pleased to no longer need regular blood tests to check his warfarin levels. He also stopped Noel’s digoxin prescription. Noel had been experiencing cold hands and feet, migraine, and pins and needles whilst taking the bisoprolol, so the specialist reduced this dose. He does find that his heart rate takes longer to increase when he exercises as a result of the bisoprolol. Noel also takes thyroxin for hyperthyroidism, and has been told that thyroid conditions are often linked with AF.

When Noel attended an AFA conference last year, a specialist there told him that he should be on warfarin, as aspirin is no longer considered to be effective in reducing risk of stroke in people with AF. However, when Noel mentioned this to his regular consultant (who he is now able to see as an NHS patient), he was told that he should remain on aspirin. Noel feels that there are contradictory messages from medical professionals regarding anticoagulation, and finds the CHADS2 system arbitrary.’ Although Noel says he is coping with AF, he finds it a depressing illness as he feels it will get worse and there is nothing he can do to make it better. He exercises, eats healthily, and practices transcendental meditation. Noel’s big fear is of having a stroke, and this regularly plays on his mind. He has read about remodelling’, where he understands that the heart changes shape in response to AF, which can increase the risk of stroke. He feels that the provision of an AF nurse to talk to would be a great help, and that he would also benefit from a support group in his local area. Coffee or chocolate late at night are triggers for Noel’s AF, as is being in a stressful situation. He describes bad interlude of AF as feeling like a bag of worms wriggling in his chest. He says that he tries to remain positive, but that it is sometimes hard to do so in the middle of the night when he has physical symptoms of AF.

Noel is now in persistent AF, but says that he has been told by his consultant that he is not a prime candidate for a catheter ablation, since he is managing to live with his AF. Noel, however, is keen to return to normal sinus rhythm if possible. Noel had an ultrasound of his heart conducted two years ago, and would find it reassuring to have another now, but has been told this is not possible. He feels that a link or means of communicating between hospital departments about patients would be useful, and feels that NHS staff have been generally reactive in his care. He urges medical professionals to try and understand the whole person and not just their AF to take into account their personal circumstances, aspirations and desired outcomes. He reminds them that each person’s experience of AF is individual. He strongly feels that there should be more aftercare offered to people with AF if they want it, rather than just prescribing medication.

Noel advises people with AF to research the condition themselves. He also suggests going prepared with questions to an appointment with a specialist, as he found the experience rather daunting, and did not ask all that he had wanted to. He recommends meditation or just sitting quietly and experiencing your heart beating when not in AF, and trying not to dwell on the condition. He suggests that people try and find out their own triggers and change their diet or exercise accordingly.

Interview held 25.9.12