Paul
Paul was diagnosed with AF after noticing a very high heart rate whilst exercising. His only symptom is a pain in his back during an episode of AF. He did take warfarin but now takes aspirin. He also takes a beta blocker called bisoprolol. He now has persistent AF.
Paul exercises regularly and has always worn a heart rate monitor when doing so. He noticed he had a heart rate of 220-230 beats per minute and thought the machine must be broken. He tried another two machines, but kept getting a high heart rate reading, so he visited his GP and was diagnosed with atrial fibrillation. Paul had a number of blood tests to try and find out if there were any underlying causes or other conditions that could be causing the AF. All his results were fine, but Paul says that in a way he would have liked something treatable in order to give a reason for him getting AF. He wondered if his AF started because he was doing too much exercise by training for a marathon, but his GP did not think this would cause AF. Paul’s GP referred him to see a cardiologist, who he sees every 6 months. Paul says that at the time he was diagnosed he found himself questioning all of his habits. He says he was overweight, and regularly drank alcohol and coffee, plus had high blood pressure. Paul and his wife decided to change their lifestyles. He lost weight and cut alcohol and caffeine out of his diet completely. He says that he wanted to do something positive because of the AF, but felt disappointed when the changes did not stop the AF (but he does feel better generally for having made the changes). Paul also kept a diary of his AF episodes for a while, to see if he could work out any patterns or triggers.
A cardioversion was arranged for Paul and he was put on warfarin in preparation for the procedure, to reduce his risk of a blood clot. It took time to get his warfarin dose right. He needed a blood test every three days at the start, then once a week, and then every fortnight. His arm got very bruised and sore. He was also taking amiodarone, which put his heart back into its normal (sinus) rhythm, so he actually ended up not needing the cardioversion. Paul only took amiodarone for 12 months, as he was told that it could damage his liver if taken long term. He was then prescribed dronedarone instead, but this did not work for him. Paul had an ECG, an electrocardiogram, and wore a Holter monitor, and these tests showed that Paul did not have any underlying problems with his heart.
Paul does not have any classic symptoms of AF, except for a pain in his back when he is having an episode, but his GP and cardiologist have dismissed this. Paul is now in persistent AF. He says his biggest fear is having a stroke, and he takes a low dose of aspirin to reduce his risk. He also takes the beta blocker bisoprolol, which also lowers his blood pressure. Paul feels lucky that he does not have a lot of problems with his AF, as he realises that some people do. However, he says that he may not have symptoms, but he still has AF and is at an increased risk of stroke. He found it unhelpful when his cardiologist suggested that he might not want to take any medication at all. Paul says that his cardiologist is open and responds to his questions and concerns, but leaves him as the patient to make decisions. Sometimes Paul would like more direct advice from his cardiologist, as he can feel that he has to fill in the gaps and guess how his AF might be in the future. Paul looks up information on AF on the internet.
Paul had never heard of AF before he was diagnosed. He says that people know about the dangers of smoking for example, but not about AF, and thinks that awareness of the condition should be raised. He feels this would be helpful for individuals, but also for the NHS, as early awareness and treatment can prevent stroke. He wears a bracelet which has information relating to his condition engraved on it. He advises people with AF not to panic, and for family members to reassure them. He asks medical professionals to be sympathetic to patients fears and expectations, and to explain things fully. He feels they should also reassure the patient, but not treat them as if they are unable to understand or deal with certain information. Paul says he has often had his cardiologist appointments cancelled, and feels he could slip through the net’ if he was not persistent in rearranging them.
Interview held 21.12.11