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Living with atrial fibrillation

Published on 23/04/18 at 11:05am

Tony Green discusses the difficulty in pinning down his diagnosis of the irregular heart rhythm condition, until his use of AliveCor’s KardiaMobile smartphone ECG device, at the recommendation of his cardiologist, proved to be a turning point on the way to better health.

How did your symptoms begin?

It started in early 2015, getting chest pains and jaw pains that kept coming and going. I had an ultrasound and an ECG and we couldn’t find anything – nothing was showing up. I was kind of in limbo, and I got frustrated because I knew something was wrong and there were no specific tests other than an ECG every three or four months. Medical professionals asked me “what does it feel like?” And I said “it’s bad, it’s like an angina pain; it’s really, really painful”. So they said “if it sounds like angina we’ll put it down as angina”.

The turning point for me was last year when I lost patience and asked to be referred to a different cardiologist, and I got referred to a gentleman at the New Victoria Hospital in Glasgow. He also couldn’t get anything to show on an ECG, but he did say to me that there is a machine called KardiaMobile out there that you can buy that would give you a chance to get an ECG in the middle of an attack, which you can then email through. It was an expensive piece of kit, but, by this point, I was so miserable and run-down with it all that I thought, “just do it”.

So I bought it, and lo and behold, not long after, I had another attack. I ran an ECG through KardiaMobile and emailed it to my cardiologist, who then came back and said it was atrial fibrillation (AF). He then suggested a course of treatment.

I got put onto a pretty toxic drug called amiodarone, which has actually stopped it dead, but it is only the drugs that are keeping it at bay. On the back of this, my cardiologist instigated a CT angiogram, which I’m waiting on the results for to see whether it’s an arterial problem, just AF, or something else. 

Was there any indication that there were any underlying health issues before your diagnosis?

No, I was very healthy. I ran my own business, working outside on construction sites, and everything was good, but then it slowly started creeping in – it would happen and then go for a few months and not happen again. It was kind of a gradual progression, starting from nowhere and slowly getting worse.

Were you aware of AF before your cardiologist identified it?

No, not at all until it was all explained to me and I started researching it, with the internet being a great source of information.

Do you feel you’ve been adequately briefed on the implications of the condition by the medical professionals you’ve spoken to?

I’m a great believer in the NHS, but the first group of people that I saw had too many people to look after. It’s the same service, different people, but my current cardiologist took a more personal stance on it and said, “this is what I’m trying to find out, this is what I need you to do, and these are the options we have”. I felt a million times more comfortable than I did with the original group of people, and everything has been explained to me, including all the potentials. I did hit a very low point with it, but now I’m on the up, I feel good.

You mentioned that you went to the internet to research the condition – how did that help?

I am renowned for it – I used to work in logistics, so I plan everything to death; if there’s something that I need to know then I’ll research it to the nth degree. I went into pretty much everything about AF, heart conditions and arterial problems – you name it, I read like a devil. There’s a lot of informed opinion out there, but a lot of it is probably rubbish. Even when my cardiologist gave me amiodarone, and he explained that it could potentially have a lot of bad side-effects, I did the same again and scared myself to death. But you’ve got two choices, and I chose to take it.

The trade-off is definitely worth it, but how have you responded to the treatment?

Touch wood, so far I’ve been OK. The only side-effect I’ve had so far is probably the funniest, because you can become sensitive to sunlight, even at low levels. I didn’t take it seriously, and I went out when it was icy cold with a winter sun. I was out for about five minutes and I came back and my face felt like I’d been sunbathing all day. My workmates make fun out of me because I go to work with factor 50 on and a hat in the middle of winter.

That’s the only thing I’ve found, but I am being monitored by my GP to check my liver and thyroid function, as well as my eyes because it can affect them.

How has the condition and the diagnosis impacted your day-to-day life?

The AF attacks were very uncomfortable and debilitating, and nothing seemed to be changing – the best that was done was that my blood pressure tablets were upped, but nothing was done to physically stop it. When my current cardiologist got the diagnosis and put me on amiodarone I immediately saw the benefits. It was a key turning point because, before that, I was just going downhill. Pain is a debilitator; after a while it’ll make you feel low, and that’s what AF does – it drags you down because you’re living with it constantly.

How exactly was KardiaMobile used to secure your diagnosis?

I was a bit dubious at the beginning – it’s like a toy. It’s a small device with two pads on it; you bring the app up on your phone and put your fingers on the pads, and you get an ECG. You can email it directly, which is what I did with my cardiologist – I just emailed him what had happened the night before during an attack. It’s really easy to use.

AliveCor, KardiaMobile’s manufacturer, has said that one of the biggest strengths of the device is that it eliminates the need for patients to take costly and stressful trips back and forth between GP practices and hospitals to secure a diagnosis. Did the device simplify the whole experience for you in this way?

I’d done all of that previously. I’d been told I was being sent for an ECG, waited three months and gone to have it done, and then waited again, and by the time you’ve gone for the ECG your AF doesn’t show up. It was taking far too long to get to where we were going next. The minute we got the diagnosis, my cardiologist jumped on it and within a couple of weeks from the attack, I was being sorted out. From a personal point of view, I’m a big believer in if something means spending a bit of money upfront to save a lot of money on the back then do it.

How is the outlook at the moment and in the future?

We’re still waiting for a final decision on what the ultimate problem is, but as it stands today, I feel normal. And believe it or not, normal feels weird. I’ve tried to explain it to other people around me: you get so used to the pain and the upheaval it brings; when you actually do feel normal, it feels strange.

What advice would you give to others who find themselves in similar situations, knowing what you know now?

When I got told about KardiaMobile, I looked at the cost, and I’m not going to say it’s a cheap machine, but you’ve got to put a line in the sand and ask, “is my health worth £100?” I took the decision that it was. I would say to anybody, if you get an opportunity to get one of these machines, and I’m saying this from past experience, just do it, because it could save your life. I’m so grateful it’s unreal – I’m happy to be happy again.

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