Carin

Age at interview: 62

Age at diagnosis: 55

Brief Outline: Carin was given sotalol for her AF, but had side effects and stopped taking it after two years. After 18 months without an episode, she was upset to have one, and is now in permanent AF. Carin finds AF scary, and feels the condition is underestimated.

Background: Carin is a retired nurse practitioner and lives with her husband. She has two grown up children. Ethnic background/nationality: White Dutch.

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One evening, Carin was sitting quietly watching television and became aware of her heart beating strongly in her back. She also found that she needed to urinate lots. This carried on for a few hours and she went to A&E.  An ECG found that her heart was beating at nearly 200 beats per minute. Carin was put on a digoxin drip to try and bring her heart rate down. This only brought it down a small amount, so she was admitted to hospital, and later told that she had AF. The next morning her heart reverted to a normal rhythm by itself. Carin has a nursing background and so was aware of AF, but still found the experience very frightening and thought she was having a heart attack. Carin was prescribed sotalol in hospital and her heart rate dropped to 47 beats per minute. She found this worrying but the doctors said that the rate was fine. A couple of months after her first AF episode, Carin had another one and went to hospital. Her sotalol dose was increased, and she was told that she did not need to go to hospital every time she had an episode of AF. Carin took sotalol for two years and felt she was ‘in a trap.’ She says that alternative medications were discussed, but she felt they were made to sound as if they were not really an option, so stayed on sotalol. Carin experienced significant side effects from sotalol, including extreme tiredness and low mood. When she had to stop taking the sotalol before a stomach operation, she realised that she felt much better, and decided not to restart the medication. 

After her operation, Carin did not have any AF episodes for 18 months, despite not being on sotalol. Her thyroid had been removed due to another illness, and doctors thought her AF could possibly be linked to that. Carin thought she was ‘cured’ and was ‘devastated’ when she had another AF episode. She now gets palpitations but is not short of breath, and is grateful that she not very unwell. She is slowly coming to terms with having AF. Carin says that she has encountered a range of opinions from different doctors on whether she should take warfarin. She decided to take aspirin and says she will rethink taking warfarin when she is 65. Carin was worried about travelling abroad in case she had a symptomatic AF episode. The AF nurse gave her a ‘pill in the pocket’ medication called cardicor, to take if she has an episode. Carin says this has really given her confidence. She has not had to use it but always has it with her. Carin used to go to the gym regularly, but is now afraid to do so in case she has an AF episode. Her nurse has said that exercising is safe to do, but Carin says she would find a supervised gym helpful. Carin feels that AF is seen as a ‘benign condition’ by much of the medical profession, and that many people do not understand how scary it can be. She found it great to meet other people with AF at an Atrial Fibrillation Association conference. 

Carin feels that she has had to ‘steer’ her own care to some extent, and wonders how some people, who are not able to speak up for themselves, receive the care they need. She asked to be referred to a cardiologist by her GP, and has been pleased with the care she has received. She has also found the AF nurse, who she can contact directly, a great source of support. Carin has found the Atrial Fibrillation Association, Stop AFib and Hypertension Society websites useful sources of information. She has also recently tried some homeopathic treatments for her AF, but has not noticed any change yet. Carin prefers not to take medication if she can avoid it. She feels that people are not aware enough of AF, and that pulse checks being offered at health ‘roadshows’ in supermarkets might be a good way of picking up AF in people. She reminds people diagnosed with AF that it may take a while to come to terms with it, and that it might be helpful to join a support group if available. Carin urges medical professionals to take into account the emotional and psychological sides of AF, and not be dismissive about the effect it can have on people’s lives. 
Interview held 23.2.12

Carin thought initially that problems with her thyroid and having her goitre removed may have started her AF, but no longer believes this.

Well, it the consultant came the next morning and said, well, it was atrial fibrillation and he said, “It’s very strange” he says, “Because you’re very young to get that.” And I was sort of in my mid-fifties or whatever, fifty five or so, and very young to get that, and then I had an undiagnosed goitre, at the time, thyroid and so they, that’s what they discarded that because, and they felt it and they said, “Oh, you have you have, yeah, you have a thyroid problem at the same time.” So, you know, they connected the two things then, but that that’s not turned out to be the reason I think, because now I haven’t got that thyroid anymore. I’m taking of course, I’m taking thyroxin, which my endocrinologist said it was, that may have been the reason for me sparking off into this continuous atrial fib from as from half a year ago. But I don’t think that was the reason anymore, because I’ve lowered my thyroxin now and then nothing, you know. It’s just there.

Carin described the side effects she experienced on the beta-blocker sotalol.

I was sent home on high dose of sotalol and they gave me terrible side effects. It was horrible being on sotalol. I felt so tired, really exhausted, depressed and but fearful as well that I had to take that medication, because well, it was a preventative sort of measure and there was nothing else that they really would do to me, because my heart rate had reverted but to a to a normal sinus rhythm. But after a few months, after a couple of months, one evening, there it was again, it popped up with, I was on sotalol at the time. And so off I went to hospital again, off I was admitted again and I was, my sotalol levels were increased so I was on such a big dose of that stuff, feeling horrendous with it. I was I was sent home. It was around Christmas time. I was sent home with the heavy, heavy dose of sotalol, and my GP was going to like sort it out. So every three days I the sotalol was increased, and I just felt horrendous with it, until my heart rate reverted again. 

Carin spoke of contradictory messages which influenced her decision not to take warfarin.

So I thought about it, the risk that he had given me, otherwise I’m healthy so my risk was quite low but I, nevertheless, decided to go on anticoagulants because of what he’d said. And so I went, I then happened to have a visit with the endocrinologist, who said to me, “Oh, oh you need to, there’s a big risk of stroke. You need to go, you really need to go on it as soon as.” And so okay, I got the ball rolling. I went to see the haematologist, who basically said, “No, don’t go on it.” But nobody says, “Yes” or “No.” You know, you have to work it out for yourself, what you’re going to do. So nobody gives you like, everybody is contradicting, you know, it’s you have to like fight for yourself in the end.

So I’m still not on that because of the haematologist, I trusted the haematologist to be right. He did not say, “Don’t go on it.” But I could read in between the lines that he said, “Don’t go on it, as per yet, as per now.” So I’m on aspirin and hope for the best.

Carin is afraid to exercise in case it triggers an attack. She wishes she could be more active.

I was much more active, well, I was, in those two years, one year, one and a half years that I didn’t, I was really getting much more active than I had been and, of course, I have a weight problem and, you know, sitting around is not good. So it very much affects me that way [sniffs] that’s, you know, I’d like to get active again like I was, but I’m I fear, I fear that I’d run into troubles. So…

I used to go to the gym. I used to go to the gym like every now three four times a week. I daren’t go there anymore. So, you know, and people say, you know, my nurse, the nurse that I’ve seen says, “Oh, just go to the gym.” And I say, “Yeah, well, what happens when I’m there and I get one of these attacks?” She says, “Well, you just stop, you know. You stop, you stop moving.” 

What I would like to see happen is that there is more understanding of this condition and maybe, for people like myself, I need to go to the gym you know, maybe there’s, there should be some supervised gym, you know, properly supervised by a cardio-nurse or whatever. You know, so medical people there, that when you get this, that they’re there and they can sort of help you through, because at my gym there’s nobody there. It’s unsupervised.

Concerned at her low heart rate on beta-blockers before being discharged from hospital, Carin found her consultant’s off-hand comments unhelpful.

But I don’t think people understand what it’s like. One doctor said to me, the consultant, when I was in admitted the years before and my heart rate, I told you, dropped down to forty. And as he came on with these students or his young doctors about my bed so I said, “Well, my heart rate at night seems to drop that much that it goes below forty. I’m a bit worried about going home with that, you know.” And he says, “Oh” he says, “Oh, it doesn’t matter.” He says, “You just get out of bed and do some press ups.” You see? That’s the sort of thing. Because its benign condition, doesn’t feel benign to, when you have it [sniffs]. 

Carin felt that some doctors did not appreciate how ‘horrendously frightening’ AF can be.

I think people don’t realise, you know, what it feels like. Well, she’s very matter of fact, you know, okay, you know. Just, “Go to the gym. Go and do the exercises and, you know, if you feel if you feel you get the palpitations, just stop.” But, you know, she doesn’t realise how horrendously frightening it is. It’s really, really scary and yeah, so well, you I only know what it feels like and, you know, it’s not funny. So she doesn’t quite, people don’t quite understand and the health professionals neither, you know. When you haven’t had these things yourself, you think, “Oh well, that’s a benign condition. There is just a risk of clotting, otherwise.” But I don’t feel like that, you know. It’s a major thing to have in your life. Of course, there are worse things [laughs] but it’s real enough. But I would like I would like I just wish they would understand it better and sort of give people like myself, just an opportunity to go to a gym, where there’s medical supervision. That’d be lovely, and then I would have enough confidence into getting more active.