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The unpredictability of atrial fibrillation

Dorothy knew how to cope with the anxiety and panic attacks that she’d lived with most of her life, but atrial fibrillation was a different story. Her usual coping mechanisms didn’t work.

Dorothy had a history of anxiety problems, including agoraphobia, which started in her late 20s and early 30s, but life was full regardless.

She was married to a policeman for 43 years and raised a family of two boys and two girls. When her husband retired, the family moved to a 13-acre property in Masterton where they spent the best 16 years of their life, says Dorothy. After her husband died in 2001, she was lucky enough to find love again – with an old boyfriend from her teenage years – but after nine fun-filled years together he too passed away.

"It’s not just during the episode, it’s the time afterwards and the way your confidence just flies out the window, and it takes days to get it back again.”

Now living with her son in Whangaparāoa, Dorothy still experiences anxiety – a familiar and known entity that she’s learned to deal with. But six years ago, she started experiencing something else.

“I was getting what I thought were severe panic attacks,” she says. But none of her usual coping mechanisms were working. When she asked her GP why she was getting panic attacks when she wasn’t in the least bit stressed, he suggested that they mightn’t be panic attacks.

“So I had to wait until the next one hit and then rush up to the medical centre where they put me on an ECG and diagnosed paroxysmal atrial fibrillation (AF).”

Different from a panic attack

Dorothy soon discovered that an AF episode was different from a panic attack. The latter “kind of peaks and down she goes and you’re okay. And you can actually function through it. But I couldn’t function through these,” says Dorothy.

AF, by comparison, was all-engrossing. “It’s what I used to call ‘greying out’ – kind of not quite fainting but almost there. Like if I started one in the car and got out of the car, as often as not I’d drop to my knees...”

During one hospitalisation, she learnt that her heart “was actually stopping beating for about six seconds” before starting up again, which helped explain the severity of her symptoms. Dorothy eventually got a pacemaker, which helped reduce the need for those emergency hospital trips, at least. But she still gets episodes of AF, with absolutely no warning. “There’s no pattern – I can get up out of bed in the morning, take half a dozen steps across the hall, and by the time I get back to the bedroom I’m in AF. It’s weird.”

Managing an episode

An episode for Dorothy can last from two hours up to 12 hours. But most episodes don’t involve a terribly accelerated heart rate - “it might go up into the low hundreds”.

“With some (episodes) I can just potter around and do sedentary things… with others I have to put my feet up and I read, which stops me from focusing on it.

“I sleep a tremendous amount… and usually I’m fit to get up or get moving again the next day. But, as I get older, it takes me several days to get over an episode. I just have no motivation whatsoever, my confidence just completely goes and it plays into the agoraphobia of course. It’s a very good reason not to leave the house. That’s a very hard part of it, I find.”

Still, she pushes herself to do things, and finds the social benefits usually outweigh the risks. “To cut a long story short, I’m on my way home thinking ‘well I enjoyed that’.

“I’m the secretary of the local 60s-up branch and I also do volunteer stuff over in the office at Age Concern, so I’m not sitting at home with my finger up my nose, but I’d like to,” she quips.

Impact on day-to-day life

Dorothy says she’s “a lot slower” than she used to be, but thinks that could be due to ageing and having a “lazy bone”, not just AF. “As my family never tire of pointing out, ‘You’re nearly 80 Mum!’

“I’ll have lunch some days and I’ve been known to go to sleep straight after, when I’m sitting there doing the crossword. If I was in my 30s or 40s, well, fair enough you could say ‘well that’s AF’ but I kind of wonder how much is AF and how much is ageing.”

To help prevent any further episodes, Dorothy’s had to surrender some old-time indulgences – namely cigarettes and alcohol. She knew from the first time she ended up in hospital that the smoking would have to go, but the drinking was a bit more of a surprise.

“I was in there, in A&E, and I happened to say to the nurse that I was really looking forward to getting home and getting myself outside with a glass of wine. ‘Oh I wouldn’t do that’ she said. ‘That can be a trigger!’ So I gave up smoking and I gave up drinking a couple of weeks before Christmas!”

Dorothy used to thoroughly enjoy her wines – “probably enjoyed them too much” she says. And though she was told by her doctor that one glass of wine with dinner would be okay, she hasn’t taken the risk.

“Look, it’s such an awful thing that I wouldn’t knowingly do anything that would trigger an episode. It’s not just during the episode, it’s the time afterwards and the way your confidence just flies out the window, and it takes days to get it back again.”

Dorothy’s even given up caffeine on her doctor’s recommendation – but draws the line at chocolate. “I’d be really heartbroken if I had to give that up.”

What actually helped…

Dorothy says the first thing she’d advise anyone who’s been diagnosed with atrial fibrillation is to “get on the Heart Foundation’s AF website because I have learnt more from that particular web page than I did from anything, in years”.

During an episode, try not to panic, she adds. “You feel as if you’re going to drop dead anyway, but you tend not to. You’ve just got to sort out your own way of coping.”

Dorothy says when she was first diagnosed, she wished there was an AF support network available, but couldn’t find anything locally. “I would’ve been so, so grateful to talk to somebody who was actually living with the condition.”

What has helped, she says, is recently getting back into exercise and to walks on the beach, which she’d avoided since her dog died two years ago. “After Kate died, I went (to the beach) once and it was so awful I never went down there again.” But since joining a group of “golden oldies” in her area – offered as part of the Green Prescription – Dorothy’s once again realised the benefits of some gentle exercise.

I think I’m the baby of the group at 78! It’s wonderful, it’s a lovely feeling! The first day I was there I was thinking ‘this isn’t going to be doing me any good, it’s too easy’ – until that afternoon when I could feel all the muscles that’d been worked.”

She’s also arranged a weekly walk on the beach with another woman from the group. She says having someone depending on her makes it more likely that she’ll keep it up instead of falling back into sedentary habits.

There are times, though, when all she wants “is someone to gather me up and look after me”. But despite the ever-present fear of another episode, Dorothy tries to keep things in perspective. “I try and tell myself, ‘Well, you know, get your big girl pants on – there’s a lot of people in a lot worse situations than you are.’ Well that’s my modus operandi when I’m coping with a pity party. I think, ‘What have I got to moan about?’” 


Shared February 2017

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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1 Comment

  • Christine 9 May 2017

    I am so very, very proud of my Mum. As she mentioned, she has always had anxiety problems so this new set of obstacles could have really crucified her. But as you have read, she has kept on going with her clubs and her exercise. She copes with AF incredibly well. It doesn’t stop her. Even though I am sure she feels initially uncomfortable, she will fly down to Wellington to spend time with me. I love you Mum xxx