Suzy

Age at interview: 49

Age at diagnosis: 48

Brief Outline: Suzy had palpitations intermittently for years, but was diagnosed recently when her symptoms worsened. She tried bisoprolol and flecainide but experienced side effects. An ablation was successful and she is now feeling well, and is not taking any medication.

Background: Suzy is a self-employed cognitive behaviour therapist and is in a relationship. Ethnic background/nationality: White German.

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Looking back, Suzy remembers first having occasional palpitations and breathlessness as a teenager, but got used to the sensations. She had mentioned them to a GP in the past but they had taken her blood pressure and assured her that nothing was wrong. Recently, the time between episodes started to get shorter, and she found it harder to recover after being ill with colds. She also noticed that eating a big meal and lying down caused symptoms. Her step-father saw his GP with palpitations and needed a heart bypass, and this made Suzy take her symptoms more seriously. This combination of events led Suzy to see her GP, and she was referred to see a cardiologist. Suzy had private medical insurance so started to use that to continue her care. A seven day monitor showed that she had paroxysmal AF. She was shocked to be diagnosed with AF. Her mum has AF so she knew about the condition, but assumed that she would not develop it at the age of 49. She found her cardiologist very reassuring and he told her that medication and surgery were available. 

Suzy was prescribed bisoprolol but this made her feel tired and dizzy. She also tried flecainide but continued to have symptoms. She had her worst AF episode after being diagnosed, where she called for an ambulance. She was taken to A&E and given intravenous flecainide to stop the AF. Suzy’s symptoms were in fact getting more debilitating and she found work a struggle. She restricted her driving and found travelling at rush hour on the tube difficult. She found that she could have adrenalin rushes like fear, where she felt like she had been punched in the stomach. She was referred to an electrophysiologist and was put on warfarin in preparation for an ablation procedure. During the procedure she was also found to have a benign arrhythmia called right ventricular outflow tract (RVOT) tachycardia. She found having an ablation an ‘untraumatic’ and ‘very positive experience.’ After the procedure her groin was sore where the catheter was inserted to conduct the procedure, and she had a few episodes of AF, but was told that this was quite normal until her heart settled down. 

It is now five months since she had an ablation, and Suzy is feeling 80% back to normal. Her resting heart rate is slightly higher than it used to be, and she finds it reassuring to use a home blood pressure monitor every so often to check her heart rate. Her monitor has a function where a ‘fluttery heart’ appears on the screen if there is an irregular heartbeat, and feels that such a machine may help people notice if there is an issue they should see their GP about. Suzy finds that she gets tired by the end of the day, but calls this a ‘cozy tired.’ She uses a fitness tool called ‘Mi Coach’ by Adidas where she wears a chest strap that monitors her heart rate and the length of time she exercises. She also has a ‘Fitbug’ which counts the number of steps she takes. The Mi Coach plugs in to her iPhone and the Fitbug in to her PC, and she can upload the results. Her private health insurance company rewards her with money off her premium if she completes a certain amount of exercise, and she finds this motivates her. She drinks no alcohol, has cut out caffeine from her diet, and is trying to reduce her chocolate consumption. She has also reduced the amount of spicy food she eats, as she finds chillies can raise her heart rate. 

Suzy is a cognitive behavior therapist and found her training helped her in dealing with her anxiety, but still found it hard to think rationally at times, particularly when she wondered whether the ablation would be successful. She also found mindfulness useful. This involved noticing and describing to herself the symptoms she was having, recognising that they were unpleasant, but reminding herself that she was still breathing and that the symptoms would pass. She found being able to ‘phone and email a nurse specialist with any questions or concerns particularly useful. She also found having an echocardiogram reassuring, as it confirmed that there was nothing wrong with the structure of her heart. She found the information provided by the Atrial Fibrillation Association very informative, and valued attending one of their conferences where patients could ask questions and find out about the latest research on AF. 

Suzy feels that the psychological impact of AF should not be underestimated, and urges medical professionals to remember that AF affects people in different ways, and that people will respond to it differently too. She feels that for people with ongoing AF, or who have difficulty in coming to terms with their diagnosis, some form of psychological assistance may be useful and could improve quality of life. She would also like GPs to bear AF in mind when a patient presents with possible symptoms of the condition. She feels that people are generally not aware of AF, and it was only when she urged a friend of hers to go to the GP with palpitations that she too was diagnosed with AF. She suggests that if you have symptoms and see a GP, and are told that nothing is wrong, to persist in going back if you still feel unwell. She reminds people with AF not to necessarily accept their symptoms or side effects, but to ask whether there is anything that could be done to help. She also reminds people to be patient and compassionate with themselves, but also not to let AF stop them doing what they want to do. Suzy listens to her body, but if she feels it is her thoughts more than her body that are restricting her, she carries on and ‘holds the fear lightly.’ Suzy says she is really glad that she had an ablation procedure, and urges people to have one if it is offered. Suzy is feeling positive about the future, and feels far more settled than when she was unwell prior to having an ablation. She sets herself small goals, and her next is to go on a golfing holiday next year. She says that she appreciates life and is more easily contented than before. 

Interview held 6.11.12

Suzy noticed her heart ‘beating quite strongly’ after playing golf but did not realise her symptoms were AF.

Yes, so when after being ill, when I first started exercising again after this one particular ‘flu that I had, I played golf and golf was sort of slightly harder work than usual, but I wasn’t paying much attention to it because I was focused on the game, but when I got when I’d get home from these games, I would lie on the sofa and just feel really floored and not feel up to doing anything and a bit surprised and my heart, just could feel my heart beating quite strongly. And just thought, “Oh, I must be, maybe I started playing golf again too soon or something. I still haven’t quite recovered. My heart is sort of labouring a bit.” And I particularly noticed it I think if I’d had a big meal and then was lying on the sofa, rather than a just a short snack. If I kept moving around, I didn’t notice it so much. It was more when I rested that it kicked off. Which I then noticed more after I was diagnosed, I thought, “Ah yeah. That’s exactly what it’s been.” Because I suppose I was getting it more and more often even when I wasn’t ill and that’s why I started noticing things. But it’s amazing how you can have it and not realise it for years on end.

Being self-employed, Suzy had to make changes to her working life as her symptoms worsened. She found it difficult to travel into the city to meet her clients.

It impacted quite a lot in the last two or three months before the ablation because it became symptomatic more symptomatic more quickly and I didn’t quite recognise my life anymore. It was quite scary and also I’m self-employed so when I don’t work I don’t get any money, and I’ve got a big mortgage in [area of city] and stuff. So I wasn’t able to work in [city], which is about a third of my income. I just had to bite the bullet and say, “I just can’t do that for now.” My clients could either come and see me in [area of city], which is easier, was easier for me to get to, or I offered two or three of them to do Skype sessions, so I was able to do some work that way, but it wasn’t ideal. I found that on one of the last days, I did go into [city]. Normally, the Tube, the rush hour, the stairs up and down, Tube stations are fine. I’m just used to them. I’m sort of one of the people in the flow who just stomp stomp along and don’t take any prisoners on their way. But suddenly I was like one of those elderly people clutching onto the railings, sort of saying, “Okay. I’ve done three steps. Now let me stop and take three breaths and wait a bit.” And people jostling me and being impatient, why was I standing in the way? And it was very difficult not to be become quite stressed and annoyed with myself when that happened, because I was one of those people. I wanted to be, there’s a strong pull to be one of that crowd who just rushes past. It feels very odd to be the one who has to slow down.

Suzy has made few changes to her diet but has cut down her use of chillies and given up chocolate.

When I was first diagnosed, I was asking my specialist, you know, “What can I do? Tell me, if there’s anything, any lifestyle factor, I’ll change them immediately. I’m very motivated about these things.” And he was saying, “Suzy, you’re not doing anything bad.” And I said, “I suppose I’m not a bungee-jumping banker am I?” And he said, “No, above all you’re not a boozing banker.”

So I drink herb teas and water and don’t really want for anything else. Other lifestyle factors, I really, really love very spicy food. I love chillies and there is a school of thought that says that maybe even very spicy food could trigger AF in people who are sensitive. I, it certainly turns up the heart rate. I haven’t given up chillies but I’ve probably cut down just a little bit, because I just haven’t wanted to rock, rock the boat of not being in AF. But it would be very difficult for me to give up on spicy food but maybe there’s no need. Chocolate I’ve given up actually, just in case.

Suzy wants health professionals to be patient and to understand the psychological impact of AF.

Ah. I think just be patient, be compassionate and understanding and give the person time to digest the information and to accept, and give them, yeah, give them ways of accessing information. And again, if they seem very anxious and not very reassure-able, if they don’t rally to sort of an accepting outlook and ready to tackle things, if they’ve completely lost their sense of humour, then consider psychological support for them as well. And again, don’t underestimate that. Just because they haven’t got an open wound or they might not even be in pain particularly, it’s still a very, very unpleasant condition to have for some, for some people who get strong symptoms. And everybody experiences it differently as well so I can imagine that health professionals might sometimes be tempted to say, to think, “The last person who came through the door was sort of really good about it, why is this one playing up so much?” [Laughs]. They might not be thinking that but it would be understandable because for some people it’s more scary, there’s maybe more adrenalin being realised and the symptoms are much more dramatic. Whereas for the first person, they just don’t notice it so much and that’s why it’s easier for them to be stoical about it. 

Suzy has tried to spread the word about AF amongst friends. She believes GPs need to know more about AF and increase awareness.

No, people are blissfully unaware of AF and the symptoms associated with it and I’ve tried to do my bit to spread the word. And so when I told all friends and family, obviously, after my experience with AF, I’ve said to a number of female friends, the thing is I’m 49 and so quite a few of my friends are at this age where they’re sort of heading for the menopause, which quite often goes with palpitations anyway. And women are told not to panic, that it’s just palpitations, and I now very much know that you should never ignore palpitations. They’re probably alright but you may as well go and have them properly checked out, because they may be AF and then you’re much better off if it’s caught early. So as a result of me telling all my friends and people I know about this, my friend, [name], who’s been having palpitations for three or four years, went to her GP. The GP referred her to a cardiologist. She had a seven day monitor and she was in AF. She was in AF two or three times or so nearly every day for a short period that week. So at least my experience has helped one person be diagnosed and hopefully, be diagnosed nice and early but I would want to say that to everyone. And I think GPs need to know more about it and, without making people panic about what might be just completely normal, people need to be aware of it. Unfortunately, that costs money to have everybody monitored and checked out, and so that’s why I think it would be fantastic if the makers of monitors for home use could sort of maybe get their act together.