Anne

Age at interview: 71

Age at diagnosis: 70

Brief Outline:

Anne had symptoms of AF for about six years before her diagnosis. Controlling her blood levels on warfarin was difficult. Now on rivaroxaban she has not had an episode of AF for two years. Other medication includes the beta blocker carvedilol.

Background:

Anne is a retired medical social worker and lives alone. She has three grown-up children and is a busy grandmother. Ethnic background/nationality: White.

More about me...

Anne had never heard of AF, but says she would have acted sooner if she had been aware of the increased risk of stroke associated with the condition. For her, the idea of having a stroke is the most frightening thing of all. Diagnosed in 2011, she now realises that she had probably had AF for around six years. Thinking that palpitations were a normal part of ageing and remembering older relatives having them, she so did not initially go to see her GP. Anne is also asthmatic, and thought that the breathlessness she felt was due to that. A typical AF episode usually happened during the evening, when sitting quietly. Anne had no warning signs and could not see a pattern to the episodes. She went to bed and tried to sleep, but often this meant a ‘rough’ night and she felt exhausted and unwell for a day or two after. Anne also has an enlarged heart, diagnosed when she was younger, however she does not think that this has any connection to the AF.

When the frequency of Anne’s AF episodes increased to once every 12 weeks, her GP referred her to a cardiologist. She was given a 24 hour monitor to wear but did not have an AF episode during that time. When she next had an episode, she saw her GP, who called for an ambulance. Anne was amazed as she felt no differently than she did during any other AF episode. She was impressed by the ambulance staff and had an ECG in the ambulance and again at the hospital. However, she waited for 8.5 hours on a trolley in A&E before getting a bed on a ward. Despite Anne feeling better, the monitors showed that the AF was still happening. She received an injection of digoxin and stayed in hospital for four days. Her consultant mentioned the possibility of an ablation procedure, but after speaking to colleagues they agreed that given Anne’s AF was occasional, it would be too risky for her to have an ablation at this stage.

Initially prescribed warfarin, Anne found the regular blood tests and frequent need to adjust her medication difficult: ‘I was one of those people who wasn’t very well controlled on warfarin’. Her warfarin levels could be affected by food, antibiotics and alcohol for example. Visiting the hospital regularly for blood tests while on warfarin intruded into her life so much that Anne decided to self-monitor her warfarin level.  However, her GP practice was unable to prescribe or support self-monitoring as the local healthcare trust did not fund it.  Eventually Anne bought her own equipment. It was ‘phenomenally expensive’, with the machine costing about £450 and the testing strips about £3 each.

With the arrival of new anticoagulants Anne was prescribed rivaroxaban and has not had an episode of AF since starting the medication. Although concerned that no antidote is currently available for bleeding, Anne describes being on rivaroxaban as ‘much less troublesome’ and is pleased that regular blood tests are not required. Alongside rivaroxaban, Anne also takes the beta blocker carvedilol. She tried 25mg twice a day but it triggered her asthma and she was told the dose was not good for asthmatics. She now takes 12.5mg twice a day. She also uses asthma inhalers, and takes simvastatin (for cholesterol), and omeprazole for her perforated stomach.

Anne has found the information available at conferences organised by the Atrial Fibrillation Association (AFA) excellent.  Although her consultant is happy to answer any questions, he has not volunteered information or discussed the increased risk of stroke. She was advised, however, against completing long-haul travel that she had planned for a few weeks after an AF episode. 

Anne feels there are contradictory messages relating to AF. She says on the one hand she has been told it is not life-threatening, but then her GP called an ambulance when she had a usual episode of AF. She says that when she has seen a GP or consultant, they have provided good care, but she has struggled to get appointments, and been left waiting around to be seen. She says it is very hard to get a GP appointment in her area. She recalls one occasion when she  called 23 times before getting a line, and was finally told there were no appointments left. She wrote to the practice and was told they were looking at their procedures, but she has not noticed a change yet. On another occasion she made an advance appointment, and the earliest one she could get was in several weeks’ time. Anne feels strongly that the occasion she was kept waiting on a trolley in A&E for 8.5 hours was not acceptable, but she said that the doctors were dismissive of the fact that had happened. She says she gets the feeling that because the NHS is free, people are expected to be grateful, and to accept such occurrences. She also feels that much of it is out of the hands of doctors and nurses, and it is in fact a wider organisational issue. 

Anne thinks that people are not aware enough of AF and its risks. She urges people to see their GP if they are having symptoms, and to make sure they are prescribed an anticoagulant. Her message for health professionals is ‘listen to your patients!’ She feels people should be given autonomy over their condition if they want it. She advises family and friends not to panic the person with AF or treat them like an invalid. She says that AF has made her reflect on her mortality, and she feels a little more nervous about having her grandchildren to stay now. But free of an episode of AF for around two years now, Anne is feeling much more positive about the future.

Interview held 7.2.12
Follow-up audio interview 29/01/15

Anne was disappointed when doctors told her to cancel a trip to rural India. She is keen to have a machine to self-monitor her warfarin levels.

[Laughs] well, I think they think that, you know, there aren’t any good doctors in India, which, you know, is not the case, but I think they thought that because I was… Because I wasn’t yet quite stable on the warfarin and I would I was going for three weeks, so I would probably have to find an AF clinic in Calcutta. I mean, you know, I could have done all that. My son-in-law would have made that easy for me.  And I think they weren’t sure what long haul would, whether that would trigger an attack. So if you had a severe attack on the journey, maybe, yes, because they’ve said there are, “Your attacks so far, have been self-limiting, but they aren’t always. Sometimes it just goes on and on and on and then it puts a huge strain on the heart, which is why we’d want you in hospital.” So if you were, you know, in the middle of a long flight. And it was going, I mean I don’t think they realised how gruelling it was going to be, because we were going to arrive at Bombay and then have to hang around for the whole day before we could get a flight to Calcutta. So it was going to be gruelling and, actually, the way I was feeling earlier on this autumn, it was a wise thing. 

In a sense there’s a feeling that doors have closed now, that I probably wouldn’t get in, round whole world medical insurance anymore, and I probably wouldn’t risk going long haul any more. So that’s, yes, that’s a door closing… but it’s not the end of the world by any means.  That you know, now that I will shortly buy this machine and have it under my control, then I’ll feel a great deal better, yeah, then I can, you know, I can take it with me when I go away and not have to worry about, you know, perhaps I ought to be finding myself an AF clinic in a in a foreign country or a strange city. I’ve got it with me. Yeah, I like to be in charge of myself really. That’s it.

Anne wants to be in control of her warfarin medication but has had to battle to get her GP to support this.

But I want to be in control of it myself. The nurses are busy up there.  They don’t seem to be, I don’t know, they made a mistake a few times. They’ve, when it started to settle down, they said, “Oh good, we don’t need to see you again for six weeks.” This had only been one reading that had been stable. So I feel much safer doing it myself but I asked them, they said, “Oh no, no, no.” I asked the GP and they said, “Oh, we’re not allowed to.” And they read, the GP read me out something from the primary care trust or whatever it’s called nowadays saying, you know, “[local area] GPs must not get involved with people self-medicating.” Which seems so stupid because it’s going to be a hell of a lot more costly dealing with residents with strokes than, you know, than spending a bit of money on the on the strips and the needles.

Anyway, I have pushed it and pushed it and pushed it and now, it turns out, that yes, [local hospital] has got a programme all set up that if people are persistent and they buy their own and they buy their own strips, then they can monitor them and test the machines every now and again, perfect. But it’s been a battle getting as far as this to find out that, actually, yes, if I do go and buy it, I will be supported with it. It’s really been a battle getting that information. Nobody was going to volunteer it.

Anne has lost 10.5 stone. She talked about dieting and the effect that has had on her warfarin.

I lost ten and a half stone. I went from nearly twenty two stone to ten and a half. I mean gradually it comes back and then I do it again, just to keep it sort of, I can cope on sixteen stone. I’ve been that for many, many years but, when it gets to nineteen and so on, really struggling and, of course, breathless. So everything, you know, becomes rather confusing as to what’s causing what. And the warfarin is a terribly bad regime for that because it immediately is thrown out and, you know, out of sync and you have to keep on going back and being checked and have the warfarin levels changed and so on.

But any variation in your diet, antibiotics, anything can throw the warfarin levels out, and I find it very unnerving. 

Anne’s doctor recommended rivaroxaban after she experienced problems with warfarin. She has not had an episode of AF since.

I was one of those people who wasn’t very well controlled on warfarin and I was having to I bought my own equipment and tested myself and I was having to change the medication pretty well weekly, although I had a very similar diet week on week. And I think they just thought that, you know, this is a drug with fewer side effects and is less influenced by lifestyle changes or, you know, it’s much more consistent.

As far as I know, it’s just been a positive thing. It’s been much less troublesome and, whether the fact that I haven’t had further attacks is to do with it or to do with something quite different or whether I’m going to have an attack today, I just, you know, don’t know but I, the fact is I haven’t had another attack.

Paramedics helped Anne better understand her condition.

Look, one of the ambulance drivers, and my goodness what a terrific bunch of people they are, without fail, they are so calm and so nice, so helpful. And one of them said to me that, I said, “Well, why does this happen when I’m, you know, I mean if I was doing exercise and the heart went into overdrive, you could perhaps understand it but always, it’s when I’m doing nothing really.” And he said, “Yes, well, we nobody knows that but because you’ve got this left bundle block, the heart, the wall, the blood goes, it should go A B C D and for some reason it goes A D E and goes the wrong way round, and then gets into a, you know, a confused state.” And that’s, you know, the only way I can sort of visualise it.

Anne described her experience after being told to call her GP when she next had an episode of AF.

When you’re feeling ill and you have to ring, and on this occasion, it was twenty three times before I even got a line, busy line, busy line, busy line. And then I got a line and it said, “You’re in a queue.” And then, when I finally got the GP receptionist, she said, “No, no appointments.” 

And I’m sure that could be tightened up quite a lot really but everything has to fit in with the systems that they’ve got already, whether they work or don’t work. This is the hospital, you know, procedure and this is what we do. And it often happens that, for example, you’ll you’re even discharged by the by the team by the consultant, and then you have to hang around all day for the pharmacy, as though your time was of no value. And I guess that is a feature of the NHS that, you know, you should be grateful that, it’s just an underlying ethos that this is a free service and you fit in with us. 

Anne does not recall any discussion about stroke risk.

No, I don’t think they’ve discussed it at all, any of them. I mean I know, you know, I know, from what I’ve read and what I’ve learnt at these conferences, that you’re five times more likely to have a stroke than someone who hasn’t got AF. But I think the input of warfarin at the correct dosage reduces that down almost to nothing. I don’t think there’s very much difference if you’re on the right dose. I suppose they’ve got the idea that this woman is going to ask questions and you know, I was a medical social worker so I know a bit. But I don’t think anybody has really suggested that, you know, that I’m more or less likely to have a stroke than another AF sufferer or what those implications would be.

Anne felt that she had received contradictory messages about the seriousness of AF.

This division between, you know, between the ideas that this is not a life killer but you must go to hospital and you must be there by ambulance, the quickest way possible, if the palpitations go on for more than five minutes, doesn’t seem to make any sense at all. Somebody is not telling the truth. Either it’s a much more serious condition than they’re indicating, or people who are sensible, could be given more autonomy over their own condition.