Eileen

Age at interview: 63

Age at diagnosis: 53

Brief Outline:

Treatments for Eileen’s AF have included cardioversion, pulmonary vein isolation ablation, a pacemaker, and AV node ablation. She takes warfarin and diltiazem but has had side effects from bisoprolol, flecainide, digoxin, and amiodarone.

Background:

Eileen is a retired nurse who is married with two adult children. Ethnic background/nationality: White British.

More about me...

Eileen describes her experience of AF as ‘an interesting ride’. The ‘ride’ began one morning 10 years ago when she awoke with a fast pulse rate, fluttering like ‘butterflies in your chest’, and needing to go ‘for a pee’ a couple of times in very quick succession. Admitted to hospital, she was told ‘it was my age and would probably never happen again’. But it did – ‘lots and lots of times’. It was not until she eventually saw a cardiologist in A&E that she was diagnosed with AF.

Eileen is unsure what caused her AF, but there is a family history of AF and stroke. She also thinks her high blood pressure and stress might have played a part. Over the years she has undergone a number of cardioversion procedures, none of which was successful for more than about 6 weeks. She describes her experience with chemical cardioversion with the intravenous drug adensosine as ‘the most awful feeling’. On one occasion while undergoing a cardioversion, Eileen woke up hurting all over thinking she’d had a stroke. She describes this as ‘the worst experience of my life’. A pulmonary vein isolation (PVI) ablation to regulate her heart rate was also unsuccessful.

Acting on her doctor’s advice that ‘AF will never kill you but a very slow pulse will’, Eileen had a pacemaker fitted when her pulse rate fell to below 30. A month later, however, she was back in A&E ‘in and out of AF like a yo yo’. Unable to take digoxin because of side effects, Eileen opted a year later for an AV node ablation. In retrospect she wonders whether she may have ‘jumped the gun’ given the advances in science and the irreversibility of the procedure. However, her standard of living has improved considerably and she has no regrets.

Eileen admits that she’s ‘tried every drug in the book’ to treat her AF, including beta- blockers and anti-arrhythmia medications such as atenolol, bisoprolol, flecainide, digoxin, and amiodorone. For the most part, the drugs have had no effect or have caused side effects. Eileen admits it’s been ‘a juggling act’ trying to balance her AF while managing her high blood pressure. A change in beta-blockers from atenolol to bisoprolol left her tired, breathless, and ‘down in the dumps’ with her blood pressure out of control. While digoxin stabilised her AF, it left her feeling nauseated, not eating and out of breath. Amiodarone upset her irritable bowel symptoms.

Eileen is terrified of having a stroke. Having seen the devastation of her mother’s stroke, she is ‘only too pleased’ to be on warfarin. She has bought a machine to self-monitor her INR levels from home. Taking a reading on the machine and then ringing the hospital with the results reduces Eileen’s visits to the anti-coagulation clinic for blood tests and gives her a sense of control. She’s had the ‘odd glitch’ where her INR levels have risen, including getting a cold and eating too many greens. On warfarin she bruises easily, has the odd nose bleed, and finds that cuts take longer to heal. Although she is aware of new anticoagulant medications such as dabigatran she is happier to keep on the warfarin rather than risk the side effects of changing her prescription.

Eileen has found the Atrial Fibrillation Association a key source of information and support. She has attended patient days at arrhythmia conferences where consultants speak about new treatments and options for people with AF, and has talked about her experiences to members of parliament. She believes that the public should be made more aware of AF because of its link to strokes.

Eileen is dependent on her pacemaker which she has checked every 6 months and ‘tweaked’ every now and again to adjust for palpitations and to ‘make it react to exercise a bit more’. As well as warfarin, she takes a combination of candesartan for blood pressure and diltiazem for heart rhythm. Since having the AV node ablation, ‘life is pretty good’. She still feels breathless walking up hill and is aware of palpitations in her chest but they no longer govern her life. As she says, ‘I’ve learnt to adjust and do a lot less. You can’t let the bugger beat you, so you carry on and hope for the best’.

Interview held 23/01/12

Eileen explained how she had gone on antidepressants as a result of her AF.

I’m on an anti-depressant, which was supposed to be for a year, which happened some time during the AF history. It all got too much. I don’t like not being in control and I think that was something else that you asked, how the AF affected you. You can’t control it and I didn’t like that. You know, you don’t know when it’s going to happen, when it’s going to hit and you’re not in control of it and having run the house and brought the kids up, I didn’t like not being in control and it affected me quite badly. So I ended up on this anti-depressant thing, which I’ve tried to come off a couple of times but what with things happening the GP said, “You can’t come off it until you’ve had three months relatively stress free.” Well, in this house, it’s not possible [laughs].

After the first attempt at chemical cardioversion failed, Eileen was reluctant to try it again. The procedure was again unsuccessful.

What they call a chemical cardioversion is when they give you an intravenous drug, which slow, which does actually stop your heart, although you’re conscious for it. That, I find, is the most dreadful feeling in the world because you feel as if you can’t breathe but you can breathe. It it’s just horrible.

So you’re awake when they’re doing that?

With the chemical one, yes.

Yeah and you’re on a monitor and there’s everybody standing by, you know but even then it’s quite frightening. In fact, the last time I went in and the little casualty officer, my sister, my daughter took me in, this is just anecdotal, and we went into A and E about eleven o’clock at night and they’re very good. You walk in and you say, “I’m in AF.” Get seen by the triage and then you’re walked straight through. I think they were having a bad night because I was walked into resus and the staff nurse had a go at the other staff nurse, saying, “We’re not doing your ECGs in here blah blah blah.” So I said to my daughter, “If they feel like that, let’s go home.” You know, “Oh no.” So they wired me up in AF, picture’s changed and then they came along, they actually spoke to the cardiology team and they said, “Oh, we’re going to do this IV drug.” And I said to the chap, “Have you ever had it done?” “No.” “Well, it won’t work. I don’t want it done.” I was feeling quite stroppy. Anyway, so we did it. For some reason, my daughter was allowed to stay, probably because she was a nurse and I was grip gripping hold of her hand. She found it the most terrifying experience and it didn’t work and they did it twice. And when I said, and then they said, “Oh we’re admitting you.” So I said, “I told you it wouldn’t work. You could have bypassed all this.” 

Eileen described what happens in cardioversion.

Cardioversion is when they shock you. They sort of put two paddles on your chest and give you an electric shock. You’re out cold. I mean you’re well sedated. So it’s no problem and it’s like you see them, if somebody has got a cardiac arrest, it’s exactly what they do then because it stops the heart and it restarts it with the hope that it restarts in a normal rhythm and I think they can give you up to three shocks to make that work.

Eileen underwent a number of cardioversions over the years, none of which worked for more than six weeks. She described the worst of these.

I think the worst time for me, was when the cardioversion didn’t work. And not only that, I it left me with burns on my chest, not full thickness burns but I was in agony and that was that was awful. 

Coming to and thinking I’d had a stroke, because my mother had had a big stroke, although she’d died by then but she’d still had the stroke, because I couldn’t move my arms and I hurt. Oh, I did hurt all over. And it turned out they’d given me whatever the maximum number of shocks were and then I think one extra for luck, if they were allowed to. And to wake up for that and then find that it hadn’t worked and it never occurred to me that a cardioversion wouldn’t work. 

Eileen spoke about the psychological impact of having a pacemaker, but admitted that her quality of life had improved since having an AV-node ablation.

The AV node ablation was very quick because I was used to the pacemaker, I’d had that in for oh, best part of a year I think, so I was quite used to the pacemaker. So it didn’t really make any difference. There was just the psychological aspect of knowing that I was now dependent on the pacemaker.

And if ever the pacemaker should stop, I haven’t got very long to get to a, well, no, they try and leave, they don’t totally take out the AV node. They try and leave a little bit, so that should anything happen and the pacemaker stops, you’ve got a heartbeat of about thirty beats a minute. You can’t do very much on thirty beats a minute but you can you can call an ambulance. 

I still am aware of going into either AF or it fluttering but I can feel it in my chest but it doesn’t get through to my pulse, if you see what I mean, because the AV node ablation stops it doing that. So, although I can feel it in my chest, I don’t have to sit down and I did get breathless. I do get breathless, walking up hill I get breathless. Whether that’s the AF or something else I don’t know. But no, having had the AV node ablation, life is pretty good. To what it was, it’s brilliant because you’re not frightened and although they say, you do get, you know, you’re waiting for the next attack, whereas I’m not because even when it comes on, it doesn’t actually affect me, you know.

Despite having no regrets about having an AV node ablation and pacemaker, Eileen wonders whether she might have ‘jumped the gun’.

Well, there’s always a worry that in my situation that the pacemaker might pack up. It shouldn’t. It’s checked but there’s that. The AF probably not great concerns. Side effects of having a pacemaker like going into heart failure or something, you know, that is a possibility. My other thing is, science is making leaps and bounds all the time and sometimes I wonder whether I jumped the gun having the AV node ablation done and that does cross my mind, although it’s improved my standard of, you know, living so much that I probably didn’t. There’s one thing my consultant always says every time I see him is, “You don’t regret having it done.” And no, I don’t. 

For Eileen home monitoring is a convenient way of testing her blood without going to the hospital.

It’s quite difficult to get stabilised and you have to have blood tests frequently, to make sure it’s all right.  I got a machine, so with the hospital’s permission, I could do it myself and I just ring them up with the results and so that I don’t have to go up to the hospital.

Is that because you’re a nurse?

No, anybody can do it. If the hospital assesses that it’s not going to freak you out or something. Anybody can do it. In fact, I first saw it advertised in the in the clinic, where you, you know, the haematology, anti-coagulant clinic was where I first saw the machine advertised and I’d been to several of the AFA conferences and had seen it there and wondered about it. Then, when I saw it advertised in the clinic, but no, you don’t have to have any medical knowledge at all.

Eileen described the difficulties of trying to balance blood pressure drugs with medication for her AF.

I was admitted I think over the weekend and, just a general medical side and they changed my atenolol to bisoprolol. And, basically, it stopped on its own again and they sent me home. Now, I didn’t know it but I don’t like bisoprolol and oh, it was awful. I was tired. I was breathless. I was down in the dumps. I’d got no appetite. I really couldn’t be bothered to do anything. 

I went to see [consultant] and explained to him what was going on. The first thing he said to me was, “Do you know what the side effects of bisoprolol are?” And I said, “No.” So he rattled off every one of my symptoms. So the first thing they did was took me off the bisoprolol and put me back on the atenolol but by then, my blood pressure, which is not easily controlled at the best of times was haywire. So then we had three months of actually controlling the blood pressure.

While Eileen wanted to find out more about the mechanics of AF, she was less interested in going online to find out about lifestyle changes.

Certainly for coping with it, I probably found enough. But I actually wanted to go a lot, personally, I wanted to go a lot deeper because of the hereditary thing and I still do the odd OU course on various health connections. So I was quite interested in finding out a lot a lot more on the mechanics and everything else. But it depends how much you want to know. There are a lot of people on line that I’m in touch with that have gone into things like, you know, how diet can control it and oh, you know, low potassium, which to me personally, is over the top and I didn’t want to go into that much detail. It certainly wasn’t going to rule my life and if I’ve got to take diet supplements and everything else that, no chance. I was on enough pills and potions without doing any voluntarily.

Eileen keeps up-to-date with new treatments at annual Atrial Fibrillation Association conferences. Local groups offer a chance to meet other people.

There’s the annual, what they call the arrhythmia conference, which is in Birmingham once a year and there’s several different sorts of arrhythmias have their own branch but the atrial fibrillation does and they have consultants and they try and give you something from a patient’s point of view. Some of the consultants come and give you what the new treatments are, what the new drugs are, you know, what your options are. Then there is there’s another there’s another conference, which is Europe AF I think but that actually is a medical conference for which they invite the patients for one day and as I say, there’s the one in Birmingham. The one in Birmingham is actually a five day conference designed at you know, the cardiologists and things but the patients come in on one day.

So they do that. They also have various groups or, you know, people set up groups, local groups. I haven’t actually got into one. I keep trying to so, of us, I was going to say I suppose it’s a bit like Alcoholics Anonymous. It isn’t because they have they get, you know, arrhythmia nurses to come and talk and dieticians and it also gives you a chance to meet other people. That was the biggest thing with AF was the Atrial Fibrillation Association when I found it, was realising there were other people my age going through the same thing.

Eileen highlighted the importance of responding to the ‘patient’s lead’ rather than being over-protective.

Be swayed by the patient. Try not to molly-coddle them too much. I felt swamped and it’s a frightening enough procedure anyway without or frightening enough condition, without knowing that everybody else is scared stiff as well. So you’re trying or I found I was trying to protect them probably the wrong way, by not telling them what was going on. But if I really told them how I was feeling, they’d have been even more scared. So be there because a lot of the time you look fit and healthy. I mean people say, “Oh, you’ve got that? You look so well.” So you might look well, it’s sort of partners sort of try and read the signs I think. Be aware if they say they’re tired and they’re sitting down, it might be because they’ve gone into AF and just don’t want to tell you. Don’t want to make a big thing because don’t want to be swamped, wrapped in cotton wool or over protective. Be supportive, I think. Follow the patient’s lead where possible. 

Eileen called for standardisation of treatment and services across the UK.

It’s very what do you call it, post code dictated. London, you’re lucky, you’ve got loads and a lot of specialists that specialise in it. There is a list on the internet. I don’t know much about the rest. [City] has got quite a good unit but I don’t know whether they’ve got any electrophysiologists or not. That’s the real thing is finding the EPs, especially in this day and age because there’s a lot more younger people that are developing AF and so you, you know, and to develop it at thirty and forty is it must be horrendous. So no, it’s very much a post code lottery.