Janet

Age at interview: 74

Age at diagnosis: 74

Brief Outline: Janet had experienced angina for 10 years but after a recent episode of breathlessness on holidays she was diagnosed with AF. She has been advised to take warfarin and to have a cardioversion. She is undecided and has deferred her decision.

Background: Janet is a retired social worker. She is married with 5 adult children and lots of grandchildren. Ethnic background/nationality: White British.

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Having been diagnosed with angina 10 years ago, Janet was used to getting out of breath when going uphill or in cold weather. She had learnt to live with this and hardly noticed it. But when she found herself getting very breathless walking up steps from the beach to the hotel during a holiday in Croatia she was concerned. On her return she consulted her GP who referred her to a cardiologist for an ECG. Thinking that she was being checked for angina, Janet was ‘shocked’ to find out she had AF and to realise that this meant she may be more at risk of having a stroke. An echocardiogram showed a healthy heart which reassured her. She was prescribed warfarin followed by cardioversion to regulate her heart rhythm.

With a diagnosis just before Xmas and a holiday booked for February, however, Janet felt there was not enough time to start warfarin and has deferred her decision. She is concerned that the potential for excessive bleeding associated with warfarin may exacerbate another medical condition, and is not looking forward to the regular blood tests to regulate warfarin levels. To help her reach a decision she has spoken to her GP who has been supportive but has left the decision up to her. She has also sought advice from her local Atrial Fibrillation Association, and has discussed alternatives to warfarin with a nurse from the British Heart Foundation ‘Heart Matters’ website. She was told that the alternative drugs are not ‘as well tried as warfarin’. Friends with AF have had mixed experiences of cardioversion, leaving Janet unsure whether to have treatment or just to ‘carry on as I am’. For the moment she has decided just to take aspirin.

Janet has been unimpressed with the care she has received so far for her AF. The consultant who diagnosed her was ‘very rushed’. Janet felt ‘pushed through’ the system and told what treatment she was to have with little explanation nor opportunity to think about it or ask questions. She has had no news about a follow-up appointment with the cardiologist to discuss her treatment although she has been contacted by the local anti-coagulation clinic on the assumption she will go on warfarin. She believes that ‘individual views get swept aside’ in treating patients with AF and feels that healthcare professionals need to listen more to people’s concerns. Janet is unsure what might have caused her AF, although she suspects it is linked with the angina. Recalling a visit to the gym several years ago when she couldn’t find a pulse after exercising, she wonders whether it has actually been AF rather than angina that she’s been experiencing for the past 10 years. The diagnosis of AF has motivated Janet to ‘invest a bit in my health’. She is conscious of what she eats, choosing a low fat diet, and drinks no coffee and very little wine. In an effort to get fit, she has paid for a personal trainer and is exercising 3 times a week. She feels ‘a lot better in myself’ and has had no AF symptoms other than occasional flutters since getting back from her holiday. She is convinced that the gym is helping her.

A keen traveller, one of the major problems she has had since her diagnosis has been the difficulty of getting travel insurance while waiting for treatment. She describes this as ‘a shock and a big disappointment’. However, as her GP was able to verify that treatment is not compulsory, Janet has been able to get insurance by paying an extra charge.

Interview held 25/01/12

Janet explained how family responses to the news could differ.

I think it’s a bit scary for family if they think, “Oh my god, is she going to have a stroke? Is she going to have a heart attack?” But I’ve never taken that attitude myself. So I don’t think anybody in the family is thinking that. Having said that, that’s not quite true because two of my sons I think have been quite concerned and one is very concerned that I don’t take warfarin. That would be his view, that or the other one and I think the other one oh, well perhaps just anxious for, you know, for how I’m going to be. 

Newly diagnosed with AF, Janet explained the problems she faced getting travel insurance.

The biggest, biggest problem I’m having is because of wanting to go on this holiday, when I told my insurance company that I’d got AF and in answering their questions, I said I was waiting for treatment so they decided that they wouldn’t insure me and they wouldn’t insure me for the angina or the osteoporosis, which was covered, and I’ve had this policy since last July. So that was a shock and a big disappointment really because it feels as though it’s making this into something much more major than I than I than I feel it is and that’s been a bit of a nightmare over the last two or three weeks to see whether anybody would actually accept me with this condition.

Recently diagnosed with AF, Janet is uncertain about taking warfarin because of a pre-existing medical condition.

I know that it can cause fairly excessive bleeding if they don’t get the levels right and I also have another medical condition that if I if I did bleed a lot it would give me a lot of concern and because that’s sort of in remission at the moment and I’m feeling quite fit and healthy, in a way, I’m quite reluctant to disturb all that. 

Janet’s appointment with her consultant was very rushed and she felt pushed through the system.

Well, she was running late. It was somebody that I’d never met. She was running late. I was over half an hour late when I went in. I don’t even remember her name. As I said, I thought I was going on the treadmill because that’s what my letter had said, “Give yourself time for this.” And I was just examined on the bed, ECG taken and then she just said, “Well, no, this isn’t angina.” If she said more than that, I don’t remember but it was very rushed.

Well, there weren’t treatment options. It was we’ll need to this, this and this, you know, follow-up tests and I know I know that the same day I had the chest x-ray and there was one other thing and I can’t think. And then the electrocardiogram and then I would need to go on warfarin and then I would need to have the cardioversion. I wasn’t really given time to say, you know, “You might like to have time to think about this.” It was, I felt just pushed just pushed me through really.

Janet explained how the British Heart Foundation had helped her with advice and information through their Heart Matters programme.

I’ve spoken to them once or twice, for some advice and I’ve also been in touch with the local AF association. So I feel that I know enough about AF but I still don’t know what’s the best way to go for the future.

I asked about the warfarin and the cardioversion and expressed some of my concerns and about my other medical problem. And I did feel very reassured that yes, it could work very well for me but also that nobody was going to really push me into having this if it wasn’t something, it was my choice and I felt reassured about that.

I’m always aware that through Heart Matters that they’ve got excellent little booklets and I had I had them on angina. We had them for my husband’s heart problems. So, you know, I’ve and I’ve got a little pack and I pass those around with friends because I just think they’re brilliant. They explain the medicines for the heart and things like that. So I, you know, I know that that information is there if I want to get it.