Over ten years ago, Chris started to have palpitations every 4-6 weeks. He visited his GP and was referred to hospital where he was given a portable ECG monitor to wear for two weeks. However, Chris did not have any episodes of palpitations during this period. Chris was not recalled to have the ECG monitor again, and since his symptoms were infrequent, he carried on with life. After four years of experiencing the same frequency of palpitations, Chris found that his symptoms changed, becoming more recurrent and intrusive. He started to feel breathless, clammy and worn out’, and would need to stop whatever he was doing when having an episode. Chris visited his GP and was referred to hospital for an ECG and ultrasound of his heart. As before, Chris was not experiencing symptoms at that time and the ECG came back as normal. The ultrasound looked at the structure of Chris heart, and he was told that it was healthy. He felt reassured to be told this, and felt a little as if he was overreacting about his symptoms, even though they continued.

Five years later, Chris went out jogging and got cold and wet in the rain. A few hours later, his arm went numb and he found it difficult to make sense when he spoke. He did not feel unwell or in any pain, and saw his GP a few days later. He now realises that he should have gone to A&E as he had in fact experienced a TIA (transient ischaemic attack or mini stroke’). He was prescribed aspirin to reduce his risk of stroke and referred to see a consultant. A few days later, Chris woke up with palpitations and a severe headache, and thought he might die. He went to A&E and for the first time, AF was picked up on an ECG and diagnosed. Chris had MRI and CT scans, plus a lumbar puncture. The MRI scan showed that Chris had had several TIAs before, which he was unaware of. Chris was prescribed warfarin (instead of aspirin), bisoprolol, simvastatin, and later flecainide. His consultant discussed at length with colleagues whether Chris would benefit from flecainide, and also explained thoroughly the reasons for taking the medications. Chris found this gave him confidence. He had also started to keep a diary of his AF episodes, which the doctor found very helpful. He does not experience side effects from the medication, although his GP did reduce his dose of bisoprolol slightly due to already low blood pressure. Chris now takes 50mg of flecainide on empty stomach, 1.25mg of bisoprolol, 40 mg of simvastatin late at night, and warfarin. He understands that he will need to continue taking these indefinitely. Chris carries an alert card to say that he takes warfarin, and also had a dog chain pendant made that he wears when he goes out, which includes his name, date of birth, blood group, and that he takes warfarin engraved on it. He finds the process of blood testing to monitor his INR efficient, and usually gets his results and any instructions to change his dose through the post.

Chris says he had mixed feelings on receiving a diagnosis of AF. He was glad that it had finally been diagnosed and that he was prescribed medication to help with symptoms and stroke prevention, but also frustrated that opportunities had been missed to confirm he had AF, receive treatment, and potentially have avoided having TIAs. He now reflects that he should have pushed for further tests, and that the doctors should have followed up the symptoms he had presented to them with, as they were still there. Chris feels a little that he was dismissed and received false reassurance’.

Chris still has frequent episodes of AF, but they are not as severe or debilitating, meaning he can usually continue with what he is doing. He feels his AF is under control’ and that he can live with the current situation. He feels reassured that his stroke risk is reduced by taking warfarin, although it did take time for his INR to become stable. Chris finds that going on holiday and consequently eating different food affects his INR. Getting cold and overeating are triggers for Chris AF, so he makes sure he keeps warm and now eats smaller portions throughout the day rather than one large meal. Chris only warning of an episode of AF is shortly before, when he feels as if the air has been withdrawn from his lungs. He sometimes wakes up in the night with AF.

Chris father and grandfather both died at young ages of heart attacks, and he wonders whether they may have had AF. This has always motivated him to exercise and eat healthily. Chris now walks briskly instead of jogging, and finds swimming therapeutic. He says he is more careful now about activities he participates in, and makes sure he always has his medication with him (for example, in his hand luggage when going on holiday). AF has not affected his travel insurance premium. Chris found it useful to share his diagnosis with family and friends, and like Chris, they had never heard of AF. Chris has urged others to seek medical help if they have symptoms of AF or TIA. He has found a great deal of information about AF online. He cautions people to treat some information with caution, and to read widely and reach an individual conclusion. He has found reading people’s experiences of AF online helpful, and was surprised to discover how varied people’s experiences are.

Chris advises people with AF to try not to panic when they are diagnosed with AF, and calls for understanding by family and friends if a person needs to withdraw from a situation when they are feeling unwell. He reminds medical professionals that reassurance is crucial for a person with AF, as they may be concerned that they may die, and also that some people may not be able to fully explain what they are experiencing. He urges doctors to follow up symptoms a patient presents with, and not to dismiss these if other tests are clear. Chris felt his AF was missed due to the clear ECG and ultrasound tests, even though he was still having symptoms.

Interview held 7.8.12