Jamie Poole suffers from hypertrophic cardiomyopathy and had his first cardiac arrest aged 20
I was so excited and loved my new job. I had to get up at 6am every day so I’d get an energy drink and take it into work.
My boss would say to me, “You know you’re going to have a heart attack one day?” And a month later I did.
I can’t remember much about it. I’m told I was on the station platform on my way to work. A couple in front of me saw that I’d gone down on one knee and asked me if I was all right. I said I was. I hopped up and collapsed.
The next thing I knew it was a week later and I was in intensive care and I had been in an induced coma.
My mum Annette, who is 48, works at the same Brisbane hospital I was in.
Hypertrophic cardiomyopathy is an inherited disease where the muscle wall of the heart becomes stiff
Funnily enough, if I hadn’t been diagnosed with HCM I probably wouldn’t have left Australia. This has made me just grab life and go for it
After getting the call from paramedics she came to the resuscitation room and they were still doing CPR. It must have been traumatic for her to see.
While I was in hospital I had lots of consultations with cardiologists who asked me about our family history and I was then diagnosed with hypertrophic cardiomyopathy (HCM).
It’s an inherited disease where the muscle wall of the heart becomes stiff. This makes it harder for the heart to pump blood around the body.
I didn’t have a genetic blood test until a few years after I was diagnosed. Yet it got me thinking about when I was a child and how I’d always felt as though something was hurting in my chest whenever I did any physical activity such as running.
There were also members of my family – a cousin who’d had a sudden cardiac arrest at 13, another who died suddenly as a toddler, which had been attributed to cot death, and an aunt who developed severe heart failure in her 40s.
About one in every 500 people in the UK has HCM, although most don’t have any symptoms
Yet none of us ever suspected there was any problem running in the family.
I was fitted with a device in my chest called an implantable cardioverter defibrillator (ICD) which shocks my heart back into rhythm if it suddenly stops.
About one in 500 people in the UK has HCM, although most don’t have any symptoms.
It’s a dominant gene so my mum has it. And it means that if I have children there’s a 50 per cent chance I’ll pass it on.
One of my cousins has four children and three of them have the gene.
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I was surprised how quickly I recovered physically after my first cardiac arrest. I was determined not to let it affect me psychologically and to carry on living.
After a month I went back to work, it was my way of coping.
I was fine for the next 18 months, then one evening I went to my cousin’s house. We had a takeaway and were up till 6am playing computer games.
I hadn’t taken my medication that night and I began to feel unwell.
I got up to walk into the kitchen to take my medication when everything became very loud. I felt dizzy and must have blacked out.
Sufferers are often fitted with ICDs which shock the heart back into rhythm if it suddenly stops
I woke up to find that I was lying on the floor, staring at the ceiling.
By the time the paramedics arrived 15 minutes later my heart rate had gone back to its normal rhythm.
Since then I’ve had eight more cardiac arrests and each time the ICD has shocked my heart back into a normal rhythm.
A couple of times I have really felt the effects of the shock, which is horrendous. I get this horrible metallic taste in my mouth but it’s better than the alternative.
Ironically, 15 minutes after the ICD has gone off I feel really good, as though it has never happened.
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It’s like I’ve got a ticking time bomb in my chest and I just have to wait until the next one. The chances are I’m going to have another this year.
Five years ago I moved to the UK to take up a job with an ad agency. I applied for a visa which came through within two weeks and the next day I booked a one-way ticket.
Looking back I don’t know how I survived my first week in London. I got a hotel room on the sixth floor with no elevator and I carried all my luggage up the stairs.
When I saw my new cardiologist in London a few weeks later she told me my ICD had 60 recorded events, which was a bit shocking. I haven’t had an episode now for four months.
The last time it happened, I was on the treadmill at Harefield Hospital undergoing an assessment for a transplant.
The doctors had to turn off my ICD to do the treadmill tests so they ended up doing CPR on me.
I’m told I’ll need a transplant within the next two years as my heart won’t last another five.
That’s scary and I haven’t even told my mum about it yet but I’m not going to let it stop me living my life to the full.
Funnily enough, if I hadn’t been diagnosed with HCM I probably wouldn’t have left Australia. This has made me just grab life and go for it.
I try not to let it stop me doing things I really want to do, whether it’s climbing a mountain or skiing down the French Alps.
I won’t let my condition define me and I don’t spend time worrying if something will happen to me.
The British Heart Foundation has helped discover new ways of testing for and detecting many inherited heart conditions and wants to ensure that genetic testing is available to everyone at high risk across the UK. Visit bhf.org.uk/inyourgenes for info.