Atrial fibrillation – a nurse’s perspective

No health expert can truly know what an episode of atrial fibrillation is like unless they have experienced something similar themselves, says Steven, a nurse who became a patient. This is his story in his words.

Atrial fibrillation for me was something other people had – even in nursing it was an ‘affliction’ that happened to people over 70 as a consequence of the ageing process. My dad had it, and like other degenerative changes of the ageing individual it sort of ‘went with the territory’.

I knew how it presented or manifested, how it progressed and what was done to manage it, but like all people – nurses, doctors or even lay-people – it is an experience which is individual to the individual and whatever the level of care involved, it is unique to them.

So no matter what level the expert, they cannot truly know what an episode of atrial fibrillation is truly like unless they have experienced something similar themselves.

Well, here is my story…….

I am 60 years old – my atrial fibrillation started in the middle of 2013. I was working on a night shift with a colleague when it happened suddenly, spontaneously and irrevocably changed my perspective of what other people suffered with AF.

...this is an individual problem – unique to me and me alone – no matter who was around me.

My colleague called Chunling took my blood pressure and pulse and said it was like listening to flood waters rushing and receding. I was sent to the emergency department by my nurse manager – she made me walk too!

I was in my uniform and as I’d come to work in it, I could not change into anything else. I was seen and assessed quickly in triage by nurses I knew well – most embarrassing. A luer was inserted, on a bed, and an infusion of 300 milligrams of intravenous Amiodarone administered over one hour...

Of course, being a nurse I was curious – always looking at the cardiac monitor and doing a running commentary – until told by the exasperated nurse (who shall remain nameless) to “button it”. Suitably chastised, I buttoned it, realising of course that I was no longer a nurse, but a patient.

So, the AF resolved by 5am (I had arrived into ED about 2.30 am), but I had to stay around in the Medical Assessment Unit with an ambulatory cardiac monitor in place until a senior review was made.

I phoned my wife about 7am and told her the good news and the fun time I was having, and she panicked – her idea of AF was akin to a myocardial infarction (heart attack). As for me? I was laughing because as a medical person I knew what I knew. Told her to stay at home and I would keep her posted.

I was sent for an echocardiogram by a registrar who reviewed and knew me – small talk and interesting talk, and then had to wait for the consultant to see me. That took place at 4pm, and fancy that, I knew who he was and he knew who I was, as did his entourage – the uniform I wore probably helped give it away.

Passing through was the cardiac educator who stopped and talked – yes I knew her too. My boss popped in, my colleagues popped in, the orderlies popped in – I think it was only the refuse collectors who did not visit me. Tauranga Hospital is rather small in many ways and everyone knows everyone else, by and large.

What did the AF feel like?

Well, obviously there’s the rapid irregular cardiac beat which felt as if my heart was jumping out my chest. I had an ache down my left arm (not as in chest pain but more of a dullness), my pulse was jumping high and low, there was also a companion ache in the left of centre in my chest, like I had been thumped there. Plus I wanted to pass urine many times, which apparently is due to the atria of the heart squeezing manically to try and return the heart to normal: that pushes fluid through it at an alarming rate which the kidneys can only resolve by excreting it in the usual way, but with increased frequency and force. I had a headache and also a dull fuzzy feeling and I felt absolutely wretched.

Of course, there was the risk of myocardial infarction (a heart attack), cerebrovascular event (a stroke), or a pulmonary embolism (which is a fat or blood clot in the lungs), but at that time all I wanted was for ‘it to go away’. Which relates to, and supports, what I said earlier in that this is an individual problem – unique to me and me alone – no matter who was around me. It is a bit like death I suppose – surrounded by loved ones but the journey is for you to take alone.

After all that, I returned home at about 6pm (driving too, should have known better) with advice, medications, and a few days off. The echocardiogram was unremarkable by the way.

I started my medication – an ACE inhibitor – and whoooah! The effect was staggering – my blood pressure dropped into my boots and I felt punch drunk. “No good” I thought to go to work like this, so I went to my GP and he agreed that my blood pressure was too low and we altered the dose. He said that the body takes time to adjust to the dose and the blood pressure should return to normal, which it did.

Did this stop the AF episodes from happening?

Not likely! When they did happen again, it was suddenly and often without warning or stress. However, the nature of my job made the stress levels higher and my frequency of episodes was more when at work than not.

My job was not an ideal one, with many twists which are another story. Eventually, after repeated episodes, I saw my consultant again and had a procedure called a CTCA (it was a new one on me) and means a CT of the coronary arteries. Straightforward but weird – the dye they used made me hot and flushed and want to pass urine – but that went away quickly.

There was nothing adverse on the scan but he did start me on a new cardiovascular medication – an anti-arrhythmic drug – but this one could not be started until the other one was tapered off. For me, it was a much better medication. I have not felt this good for years, and now I have resigned my job and feel younger, fitter and healthier (except for being overweight).

I intend to stay away from work until after Christmas then will decide what I want to do at my own pace – nothing exciting – nothing career-orientated: go to work, do the job, go home; let the managers have all the hassle.

My advice, if you’re alone…

The one way I have found that helps my AF go away is to rest and try and focus on something else. Now, that may seem odd: how can you ignore this dominating unwellness?

I liken it to a headache. When you think about it, it seems worse. Take some pain relief, concentrate on something else if possible, and then when you think about it again it’s probably gone.

I found AF to be like that with me – lying down did not help. As I am overweight I have a big puku which presses up against the base of the heart making it worse.

By sitting up, gravity returns the puku back into its correct position, and I try reading or listening to music with the headphones on (something classical and slow) and, after a couple of hours, the AF has gone and I didn’t even notice it had resolved to normal sinus rhythm.

How does the AF affect my life?

Well, when it occurs I cannot even climb a flight of stairs or bend over to pick something up. When it is not affecting me, life is grand. Its very effects are startling, but when it goes away it’s like it was never there. There are no after-effects, nothing to be found by medical examination, in fact no evidence it ever happened except from the personal viewpoint.

Will AF ever go away? Well, according to the experts, no it will not. I could lose the weight, become Mr Universe and still have infrequent episodes. I could stop the medication when I win the championship, but there is no guarantee it will not return.

My physician said that medication does not stop AF – nothing short of IV medication will stop an episode – it just reduces the risk of it happening. That’s a bit like vaccinations – they do not stop you getting measles, mumps or rubella – but they do heighten your resistance to it and significantly reduce but never eliminate the threat.

Julie was over me like a rash when I returned after that first episode in ED – stating clearly and unequivocally ‘don’t do this, don’t do that. Leave that alone, don’t do anything!’

I asked her if it was okay to breathe… she gave me a rather jaundiced look and rolled her eyes, whispering under her breath ‘men!’ and insisted I sit and stay – only thing she didn’t say was ‘fetch!’ Our dog was, at least, quite nonchalant about the whole thing, as if saying ‘what’s all the fuss about?’

She has, however, been extremely supportive and when the episodes happen she gets very upset and tearful knowing that there is not a lot she can do. I could go to ED, but the odds are that the AF would self-terminate just as I entered ED.

Sometimes I don’t tell her I’m having an episode because of the stress to her as well. Occasionally the AF episode might be irregular but muted, and the pounding feeling isn’t there.

As it affects blood pressure by causing it to go up and down rapidly (this is why I feel so wretched) I can’t always find a position which gives me a level-headed feeling, so to speak. It often feels like a combination of being drunk and disorderly and suffering from vertigo.

So, I have a life-long illness, but at the same time I don’t. I have a life-long affliction – well maybe not that either. After all, it isn’t chronic for me – it’s either there and annoying while it’s there, and then gone as if it was never there and I’m as normal as anyone in sinus rhythm.

What I actually have – as does everyone else with AF – is a potential for it to become something else – whether it is controlled or not. If it decided it wants to play really hard-ball I could be looking at a stroke, heart attack or lung clot – or death.

Nobody actually dies of AF – they die of the complications which can ensue following the episode. If that seems odd, consider what people die of and what is put on the death certificate. There is no such thing as ‘natural causes’ – you die of ‘something’ whether it’s pneumonia, cancer or whatever. You deteriorate, and the mechanism starts to go wrong but that doesn’t kill you; the disease does – when the machine stops. So from a humanistic viewpoint, you have died of ‘natural causes or old age’ because that is what humans do, but that has never been accepted as a legal reason on a death certificate.

 

Shared December 2016

Please note: the views and opinions of the storyteller and related comments may not necessarily reflect those of the Heart Foundation NZ.

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