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Gail

Age at interview: 62
Age at diagnosis: 44
Brief Outline: Gail first felt unwell 18 years ago, and then had occasional episodes of AF. Her symptoms got more frequent and troubling 3 years ago. Flecainide and bisoprolol gave her side effects. Gail has had 2 ablations (the second successful) and takes warfarin.
Background: Gail is a retired GP and counsellor. She is married with two grown up children. Ethnic background: White British.

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When Gail surfaced after scuba diving eighteen years ago, she got cold and noticed she had an irregular pulse. For the next fifteen years, she had symptoms such as palpitations, breathlessness and fatigue only occasionally, a few times a year for a few hours at most. Around eight years ago she managed to register an episode of her paroxysmal AF on an ECG machine whilst at work as a GP, but since the episodes were not too debilitating, she carried on life as normal. 

Around four years ago Gail’s AF episodes became more frequent, but still tolerable. She felt concerned and irritated when having symptoms, but then would feel better and again carry on as usual. However, three years ago her AF ‘really started to kick in’, happening once a week, lasting from half a day to three days at a time. Gail saw a cardiologist and was prescribed medication. Propafenone and dronedarone did not work for Gail, but flecainide and bisoprolol were effective in terminating the episodes. However, the medication would leave her feeling ‘spaced out’, ‘miserable’ and not functioning well for a day or so. 

Gail says she tried to endure her symptoms, as well as timing when she took medication, including only taking medication at night for episodes, as she knew the side effects would happen when she was asleep. She also tried not taking the medication at all, but still felt unwell. Gail felt as if she had to pay for the benefit of having episodes stopped through taking medication. She did notice that the symptoms and side effects were less noticeable if she was able to distract herself, such as in a social situation. Gail recalls feeling disappointed at having AF, as she had always considered herself to be fit and active, and felt like her body was failing her.  

For the last two years, Gail had episodes of AF every other day, and felt that she was either recovering from an episode or experiencing medication side effects. Although by this time she had retired from working as a GP, she still worked part-time as a counsellor, but felt as if she was ‘pushing through a fog’ when at work. Due to AF and other reasons, she decided earlier this year to stop work. Her cardiologist had previously mentioned the possibility of an ablation procedure, but was cautious and so was Gail. However, Gail reached a point where she felt she could not continue with the episodes as they were, and decided to have an ablation. She started taking warfarin before her first ablation and continues to take it. She has a finger prick blood test at a hospital outreach clinic at her local GP surgery, and finds the monitoring process quick and efficient. She carries a warfarin alert card in her wallet. 

Gail’s first ablation October last year was not successful. Whilst she was warned that it may not be, she was still disappointed.  She says that she felt ‘battered’ and ‘traumatised’ after the ablation. She had a minor complication after the surgery, and felt it was not acknowledged by the nurses as something scary for her, as it was routine for them. She described the hospital as feeling like a ‘sausage machine’, and that to some extent, she felt that the surgeons viewed her as a machine to work on, rather than taking her personal experience into account. 

Gail had a second ablation in April this year, and in the last few weeks has noticed her episodes are less frequent (now two or three times a week), often at night, and usually stop of their own accord within a few hours. Episodes can wake her up, but she can also sleep during one.  She is more aware of her symptoms when lying down, and says that palpitations in her chest feel like there is ‘a bird in there jumping around’.  Gail has reduced the number of times she takes medication and says she feels so much better not having side effects. Her episodes are mostly random and happen without warning, but getting cold and burping are triggers for Gail, as is unintentionally holding her breath. 

Gail says that ‘I haven’t had my life and haven’t been myself’ for the last two years. Until six months ago, she continued to push herself to do the same things as she did not want her AF to interfere with her life. However, after feeling particularly unwell whilst driving one day, she realised that she would benefit from doing things in different ways. She says that she started to change her mental approach, and began to come to terms with not being as active as she once was, doing other enjoyable activities and less strenuous physical hobbies. 

Gail reminds medical professionals that patient experiences of a condition are very significant, hugely varied and personal. She feels these experiences should be acknowledged, and that just a few questions about how a person is affected, how they feel, and trying to understand a person as a whole is what is needed. She reminds practitioners that it is not just a body that needs adjusting, but that people’s fears and expectations are also important in treatment. She found her ablation procedures quite traumatic, and took longer to recover than she was told it might take. When having an episode of AF in the past, Gail has felt that guidance on how long to let an episode go on for before going to hospital has been unclear. When attending the hospital for outpatient appointments, she has found the amount of time waiting to see a specialist particularly long. However, Gail is keen to stress that she is an ardent supporter of the NHS and the services it provides to all. She has found being a patient has given her insight into the experiences of her previous patients. 

Gail advises people with AF to take the condition seriously and not to brush symptoms aside, and to be kind to themselves and tell others how they are feeling. She has found it useful to read other people’s experiences of AF online. 
She advises friends and family that even though someone may look well, on the inside they may be feeling ill. She says that AF can be unpredictable and therefore may affect plans, so to be supportive of the person if they say they are feeling unwell. 

Regarding the future, Gail is cautiously optimistic and hopeful that her symptoms will continue to improve as a result of her second ablation. She says that on the one hand she dreads AF being a lifelong condition, but on the other hand she is glad that it makes her live more day to day, and appreciate any day that she does feel well. 

Interview held 21.8.12
 

Gail researched possible causes and found a tenuous link with scuba diving.

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I did find out, when I first had it and, as I mentioned, it happened when I’d been scuba diving and I did a little bit of reading around about then, and found out that it was common in, there’s some particular group of women in some country in South East Asia, who free dive for scallops or fish or something, who get it [laughs]. So it seems to be something that might be associated with, you know, it happening in physically fit people who happen to dive, so women but no, I’ve no theories about why it’s happened to me.
 

Struggling with the effects of AF and ‘hangovers’ from her medication, Gail reluctantly decided to give up her part-time work.

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But on the two days I was working, I was having to get up at half past six and drive twenty miles to the place where I was working and so that’s [laughs] that’s a bit of an effort in itself. But if I was having if I was having AF or I was having hangover effects from the flecainide, that was even more difficult, and I was having to sort of kind of pushing through a fog, if you like, to kind of get going for the for the start of the work. So I was aware of that, that it was, you know, a bit of a struggle and, whilst doing the actual work I was fine. It was it was a bit like, you know, in a social situation I seem to be able kind of click into a different mental place but it was the bits round the edges that were more difficult, the sort of writing records and the doing the admin stuff and things that I felt were starting to feel like a struggle. And so, you know, I suppose there were a goodly proportion of the times that I was working when I would be would be, have a flecainide hangover or have AF. So, I don’t know, maybe thirty to fifty per cent of the time or something and I was just beginning to wonder if I was, you know, giving my best and whether it was okay to be doing the doing the, you know, struggling on like this. 
 

Gail explained how employers may find it difficult to accommodate the unpredictable nature of AF.

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And with employers, I mean it’s the same with any other condition where you, you know, it can vary from day to day and week to week. It’s really tricky because it might, you might be perfectly fine one week and then not the next and that’s really hard for work, you know, workplaces to accommodate that. I don’t know what the answer to that one is, but just perhaps some awareness and some back-up would be good. 
 

Although Gail considers her AF ‘a lifelong problem’ which may shorten her lifespan, she believes it makes her appreciate life more.

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And I do sort of dread the thought of it kind of being a lifelong problem, and I know in one sense it is a lifelong problem but I do sort of think, “What a drag”. You know, if it’s, even if I’m sort of better now, which I hope I am, it’s going to recur sometime. But, on the other hand, there’s a sort of, ‘oh well’, you know, living life more day to day, week to week is not a bad thing. It’s quite a good thing in lots of ways. I am different from a lot of friends of the same age, who are healthy, completely healthy, and my husband I suppose, in that I don’t assume I’m going to live to be eighty something, ninety something in a healthy state. I don’t assume that, and that’s partly a kind of gut feeling, that I’m sort of thinking, “Well, if I get to seventy five, I’ll be really glad.” [Laughs]. And everything else is a bonus. So just any day feeling good is to be valued really. And that’s always a I guess a silver lining for any anybody who has an illness, that you start to appreciate days when you feel healthy much more. Yeah.
 

Gail was pleased that her second ablation appeared to be working. The procedure left her feeling traumatised.

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After the second ablation, which was apparently a difficult procedure, took four hours and I was sort of semi-sedated so that was fine. But I really felt kind of battered and physically kind of traumatised afterwards. I mean it’s not physically that traumatic but I did, and I don’t know whether it was partly, I don’t know, something happens to you on kind at a deep unconscious level, but I just felt like I’d been battered [laughs] somehow.

I was very sick afterwards and the, because of the sedatives, and the, I had a bit of a bleed from the where they’d put the catheter in. Presumably when I was being sick something kind of popped and that was, you know, mildly alarming and, but the nurse was so kind of, it’s very routine for them probably people bleeding a bit afterwards, so, and that was good in one way, but in another way, it was not so good because you thought, “[aaagh] Just acknowledge that this is a little bit scary would you please?” [Laughs].

So that might have added to my sense of having been a bit traumatised after that, after that second ablation, and I feel I just don’t want to go through that again. I mean that’s why I’m so pleased that it might be getting better.
 
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Gail is very happy with the care she has received and is a ‘total supporter’ of the NHS.

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I’ve been very happy with the care and very grateful that it’s there. You know, at the moment, with the changes in the NHS and I’m very aware of the you know how the American system and systems in other countries work, which aren’t publically funded, and I’m just so grateful for the NHS, and I am a total supporter of the NHS, and will fight to protect it in its current form because, you know, it’s a, you never know what’s going to hit you in life. It could happen at any time in your life and this financially would have been a huge thing for us if there hadn’t been a publicly funded (service).
 

Gail felt that her cardiologist did not acknowledge her as a person.

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I don’t think doctors have any sense of how you know, even something that could be seen as quite a minor procedure like that is like an attack on your body. I mean it’s mad if you think about it, you go and lie down on a table and you let these strange people stick things in your heart and, you know, freeze bits up and, you know, it is an assault on your body. And there was one point I remember the cardiologist saying to somebody, “What’s the weight?” Because they obviously wanted to know how much of some drug to give me and it was, it wasn’t, “What’s her weight?” It was, “What’s the weight?” And that just struck me as interesting, you know, what’s the weight of this body? [Laughs]. I felt like piping up, “It’s me, and I’m fifty eight kilograms.” [Laughs].
 

Gail prefers to speak to her cardiologist, rather than searching for information on the internet.

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I feel I have sufficient information, and that if I’ve got questions if I’ve got questions I’d rather actually talk to someone about it, talk to the cardiologist about it than go trawling on the internet because I don’t find that very rewarding. A lot of the sort of patient sites, patient orientated sites tell me what I know already. It’s quite nice sometimes to read about other people’s experiences, but in terms of the sort of knowledge. And I haven’t got the patience to start looking up the kind of medical sources on the internet. I just don’t like using the internet very much. I’d rather be doing something else, so that’s part of the reason. I, you know, I’d rather be doing other things, [laughs] be outside, than sitting at a computer and yeah, if I’ve got questions, I’ll ask the cardiologists about it.
 
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Gail stressed the need to find a balance between encouraging people with AF to do things while not pushing them too far.

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Even though someone appears perfectly okay, they might be feeling quite rough at times. And it’s a very individual thing how, you know, how you might want people to respond to that. But not to make you go up hills when you’ve got it [laughs]. We did an experiment a few weeks ago, my husband sort of, well, he did an experiment. He said, “Come on, let’s just see if you”, because it started on the way up a hill, “Let’s just see if you can carry on, get to the top. Come on.” [Laughs]. So yeah, to make sure you ask people what they want to do when they’ve got it and whilst being encouraging and not, you know, not encouraging them to be become an invalid, at the same time, not pushing them to do what they don’t feel able to do. What else?... I suppose there’s the thing about unpredictability and that planning stuff, you know, being aware that plans might have to change or that someone you know with AF feeling off-colour accommodated in some way. 
 

Gail, a retired GP, felt that health professionals need to know about each person’s experiences.

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Ah, now that’s a really big one isn’t it? [Laughs] I think they need to know that they’re very, that they’re much more significant than most than most doctors and nurses realise. And that they’re very hugely varied and idiosyncratic and personal. And that they should be acknowledged, and it doesn’t actually need very much acknowledgement. You don’t need to kind of go into, unless someone is really, really struggling obviously, but for the average person who’s coping reasonably, it doesn’t take much. I mean, as I said, could be just a couple of questions like, “How are how are you?” “How is the condition affecting you at the moment?” Or, “How is it affecting your life?” And just a little acknowledgement that, you know, about how it might interfere [coughs] interfere or affect with each individual’s life, and an acknowledgement that that might be difficult. That’s all that it would take, and then you just feel more like understood I think and seen as a whole person. And that, yeah, and you’re not just a body sitting there or a machine that needs adjusting.

Take more notice of that, patients’ individual, subjective experience and, you know, fears, concerns, expectations, whatever and the fact that even though the ablation is a “minor procedure”, it’s actually quite traumatic, can be quite traumatic. Yeah and to and to, even though, you know, on these wards where they have a huge throughput, each person, for each person that’s a unique and very significant experience, and just to remember that, yeah.
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