Dot

Age at interview: 64

Age at diagnosis: 55

Brief Outline: Dot has had symptoms of paroxysmal AF for ten years. She was on atenolol and aspirin and her AF was stable. A health check at work suggested her medication needed changing but this made Dot’s AF worse. She is now back on atenolol and takes warfarin.

Background: Dot works full time as an academic with management responsibilities in a university. Ethnic background/nationality: White British.

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Dot started to have occasional symptoms of AF around ten years ago, but got used to them and did not initially go to see her GP. She would feel clammy and have an irregular, pounding heartbeat, but it would eventually pass. However, one day she felt very unwell at work and found it difficult to think clearly. She spoke to a friend who was a doctor and he took her pulse and told her she had AF, and said she should visit her own GP. Dot felt scared as she had never heard of AF and was worried to be told she had a problem with her heart. She also felt annoyed that her body was causing her problems, as she has always experienced good health. Due to the fact that Dot has paroxysmal AF, when she went to see her doctor, she was not having any symptoms. However, on having a later ECG at the hospital she was in AF and the diagnosis was confirmed. She also experienced chest pains. Dot was put on a low dose of beta blockers but kept having episodes of AF. She went to A&E on one occasion, and the beta blocker dose was increased. Dot was told that she did not need to go to A&E every time she had an episode of AF, and she was given flecainide as a ‘pill in the pocket’ medication to take when she had AF. Looking back, Dot does not think that the flecainide made any difference to her AF, but the increased dose of beta blockers, called atenolol, did work. Dot’s episodes reduced to 4-6 per year, each lasting about 12 hours. She was also prescribed aspirin to reduce her risk of stroke. Her condition was stable for a few years.

Last year, Dot had a routine medical at her workplace. She was told that her ECG had shown some irregularities and her pulse was too slow (which can be a side effect of beta blockers). The consultant she was referred to put her on another medication instead, and her AF came back, so that she was having episodes 2-3 times per day and feeling very unwell. Once when she had an episode, Dot went to A&E as she was finding it hard to breathe. She was taken off aspirin and put onto warfarin. She was also put back on a low dose of atenolol, but Dot felt this was not having any effect, so she increased her dose herself to the same level she was on for a few years previously. Dot’s AF episodes reduced from 2-3 times per day to 2-3 times per week, and then to every couple of months. Dot now considers herself to be back to the point she was at before the work medical, and feels some frustration at the disruption that was caused, especially after finding out that the ECG had in fact been misread. Dot does experience side effects from the beta blockers she takes. These include feeling drained of energy, having cold hands and feet, and experiencing nightmares. However, Dot feels she has adapted to the side effects and considers them ‘a small price to pay’ for controlling her AF.  Dot finds the regular blood tests that are required on warfarin a hassle. When her levels become stable, she intends to buy a machine and self-monitor, as this would fit in better with her work commitments. She is scared of having a stroke. She initially thought that the risk of having a stroke was increased during an AF episode, but she has since been told by doctors that this is not the case, and that the stroke risk is still there even when she is not having an AF episode. This is why she feels it is important to take warfarin.  

Dot does not research her condition or medication as she believes doctors are well qualified to advise her. She has been very pleased with the treatment she has received throughout and thinks that the NHS is ‘amazing.’ She has found those who have treated her to be caring and they have explained everything fully to her. Dot says that she felt frightened when her medication was changed and the AF episodes increased, as it seemed as if the AF had got out of control. She decided to lose weight as she felt this was something she could do. The problems she experienced in coming off the beta blockers reminded her how important it is for her to take them. She still has a low pulse but does not find this a problem. Dot was due to have a cardioversion, but her heart went back into normal sinus rhythm of its own accord before the procedure date. She would be prepared to have a cardioversion or ablation in the future if her condition deteriorates. 

Dot says ‘I will not let this thing get the better of me.’ She tries to carry on with what she is doing when she has an episode of AF, but sometimes has to stop if she feels light-headed or cannot think clearly. She will often have episodes at night, but cannot notice any triggers or a pattern to the episodes. The cost of getting travel insurance has gone up for Dot. She has not joined any support groups as she feels that AF is not a major issue in her life now that it is under control. She advises people diagnosed with AF not to panic as the condition can be lived with and managed. 

Interview held 13.2.12

Dot had symptoms for years before getting a diagnosis.

I think, like many people who have AF, I was rather slow to realise that something was happening and I got it, I think, about ten years ago. And I was having it quite a lot but I didn’t, I just didn’t realise that I ought to think about it. So I can remember coming back from Chicago on a plane and realising that my heart was beating irregularly and thinking, “Oh, my heart is not beating right. If I go to sleep, maybe it’ll be alright when I woke up.” And it was, and then I forgot that my heart hadn’t been beating very well. And I think this was happening quite a lot, and I was clammy a lot of the time but I didn’t really think about it. I think probably I was feeling rather poorly but again, you don’t really realise it, and it kind of precipitated one day when I was sitting in this very office, where I was having a meeting with somebody and I just couldn’t think. And I realised that I felt very, very poorly and that my heart was beating in a rather strange way. And so I think it was perhaps some months after it had started and so I have a colleague who’s a clinician so I shot upstairs and said, “I don’t think I feel very well.” And I my ex-partner had had a lot of heart trouble, and I realised that I felt just like he had looked. So anyway, the clinician took my pulse and said, “You’ve got AF.”

Dot was annoyed that her body had ‘let her down’.

I was annoyed, because I’ve I’m an incredibly fortunate person. I’ve had enormous rude good health all my life and I have this enormous amount of energy, you know. I don’t get coughs and colds. I’ve had flu three times in my life. I’ve worked for forty years and the only time I’ve ever had time off was I’d got German measles and they wouldn’t let me in work. You know, I had a knee replacement surgery and I stayed off work for like four days or something. So, you know, I I’m incredibly fortunate, so the idea I had something wrong with me I’m afraid I took it rather badly. I was, so I was annoyed really. I wasn’t relieved or anything. I was annoyed. I think that was my reaction. I wasn’t even relieved to find out why I’d been clammy and why I’d been walking round sort of clammy and stuff like that. Anyway, so that was my response. I thought the old body had rather let me down, and I suppose if you’ve had such good fortune with your health, I think it’s a surprise to find that maybe your good fortune has given out a bit.

Dot was both relieved and worried when it was explained that her stroke risk was constant, whether she had occasional or persistent episodes.

I wasn’t ever concerned before this summer because when I was having a lot of AF before I was diagnosed, I didn’t know I was having AF and I was at risk of stroke, so I was blissfully unaware. And this summer when I was blissfully aware that there was a stroke risk, I was quite worried because I was having it so often, and I was under the mistaken impression that it was when you were having the AF that you threw off clots. And I think somebody told me afterwards, you can throw off a clot at any time. So I was I was ignorant even then. So I was worried just because of having it so much, but that was partly my ignorance because I thought it was, didn’t realise I was at risk of a stroke all the time and had been for the last ten years.

Dot called herself a ‘walking advert for the NHS’.

The NHS has been fantastic to me. They were fantastic from the very first moment, when I went into the clinic for the ECG and I was, it turned out I was having AF and they called the cardio person down. So that was huge caring years and years ago, and this summer, they have been fantastic. The NHS has been just awesome in the way that it’s looked after me because I was having, I had pains as well. You know, I had God knows what they’re from, I don’t think anybody has found out. They suggested it was indigestion last time, which is not true, because they happen randomly and at any time and, actually, they’re much less now. I seem to be sort of more stable again. So goodness knows what was going on, but so people were trying to find out what it was. So I had lots of tests on my heart to make sure it was working as well as it could. So I’ve had stress tests and echoes and I had an angiogram and all that kind of stuff. So really explored my heart. I must have the most well tested heart in, you know, the South of England. And I thought that was fantastic. At every stage, people are very caring, explain to you what’s happening and why they want to do the test and what the test involved. So the NHS could not have a happier more satisfied customer than I am, at the moment, and I think people should just realise the value of the NHS, what it is, you know, just amazing, amazing and free. Just amazing. So I’m a walking advert for the NHS at the moment.