Noel

Age at interview: 62

Age at diagnosis: 60

Brief Outline: Noel had palpitations but had to see a GP three times before he was diagnosed with AF. He had cardioversion that only lasted a week, and now takes bisoprolol and warfarin. Now in persistent AF, he is disappointed with the delays in care he has experienced.

Background: Noel works within the entertainment industry as a company director. He is married with 2 grown up children. Ethnic background: White British.

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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

Noel had no idea what AF was when he was diagnosed. He was frightened to leave the house.

Sent me for an ECG and then they noticed that it was arrhythmic. And I wasn’t told at the time but I was sent home, but I got a phone call from the GP, my GP on my mobile number saying to come into the surgery. So I went into the surgery and they told me about this arrhythmic thing that I had and they called it AF, atrial fibrillation. I’d never heard of it in my life before and I think that’s the story of most people. When they are told they have AF, they have no idea what it is, and I had no idea. And they said and, “We have to put you on aspirin straight away.” And I thought, “Oh, why’s that?” And they said, “Oh purely as a precaution.” And I thought, oh precaution, heart, irregular rhythm, phone calls on my mobile, put on aspirin, immediately start to worry, panic - and I did [laughs] all of those things. And I sat, I went home and the doctor arranged to get me up to the hospital to the cardiology unit at the hospital here in the city. And but until that happened, I was frightened to move out of the house. I just sat in the garden with a cup of tea and watched things going on round about me and the birds in the garden feeding and things, and I just didn’t want to do anything. Didn’t want to move in case I collapsed.

Noel’s doctor reduced his dose of beta-blockers after he complained of cold hands and feet.

He reduced the beta-blocker because that would, five, certain beta-blockers and a certain strength of beta-blocker will give you cold hands, cold feet and cold extremities, and that was very true and I just wasn’t sleeping. I was getting pins and needles at night. It was horrible actually. When I think about it, considering I didn’t have cancer or, you know, some horrible disease that that that kills people, I was still feeling absolutely terrible. From going from feeling fit and healthy one and a half years ago to being dependent on all these drugs and getting, you know, feeling freezing cold in my hands and feet at night, when I never was before, and getting pins and needles all the time and severe palpitations, horrible. 

Noel is conscious of the risk of stroke and monitors what he eats and drinks.

And the stroke fear I don’t think about it every night, but a lot. That really does pray on my mind a lot, stroke, fear of stroke is the big thing. So if I have, if I indulge too much on a glass of wine or if I eat a dessert or, you know, something with fat in it more than normal, I head home going, “Oh my god.” I’ve got to watch my cholesterol level here. I’ve got to watch my blood pressure. All of that, it’s a fear of stroke. And if I meet someone who’s had a stroke, I’ll think about it all of the next day. In fact, I’m seeing someone tomorrow night who has had a stroke [tapping] and when I first met him I was very, very aware about having strokes. The fear of stroke is does affect me and can cause depressive moments.

Despite being fit and leading a healthy lifestyle, Noel finds AF a depressing illness. He believes nothing can be done to cure it.

I’ve found that AF is actually, although I’m coping with it, I found it quite a depressing illness for, because there’s basically nothing that I can do to make it better. For example, if you’re overweight and you have a, you know, problem with your heart, not a serious problem with your heart but, you know, you’re overweight. The doctor will say, and you’ve got high blood pressure, the doctor will say, “Cut out the cigarettes, cut out the smoking.” Sorry, “Cut out smoking, cut out cigarettes, cut out the alcohol or cut it back, eat less fat, be more aware of your cholesterol levels and your heart will get better.” And that doesn’t happen with AF. You can be the fittest person on the planet and lots of athletes have AF. In fact, it can cause AF apparently, so there’s nothing I can do to fix my AF. There are things I can do to help control the palpitations perhaps, but there’s nothing to cure it unless I, unless by some miracle it reverses itself but it won’t because as, as all consultants say, “AF begets AF begets AF.” There’s a big slogan that that the logo that seemed to appear all over the place, “AF begets AF”