Me, my dad, and our heart condition
How an inherited arrhythmia changed my life, and how talking about it made me a better person
When the doctor stopped speaking I realised I had no idea what they had been saying. It had definitely contained a lot of syllables, but I’d stopped listening at some point. I think it was just after they said, ‘Brugada Syndrome.’ I had no idea what it was, but I was thinking, ‘a syndrome, that doesn’t sound great.’
Of course I had known something wasn’t right as soon as they aborted the test they were running on me. The fact that they put me into a wheelchair and took me to a ward rather than the usual quick consultation and “see you again in a couple of years” was a dead giveaway.
I’d been to that hospital every two years since I was six years old. They always ran the same tests. An ECG and an echocardiogram. The results were always fine. Earlier that year one of the nurses had asked me a really simple question. It was something like… “there is one more test we can try, just to be certain there is nothing going on with your heart. Would you like us to do that?”
I said yes.
There was nothing wrong with me. I wasn’t being tested because of any symptoms. I was there because my Dad had died when I was 6 years old and he was 33. It was very sudden. He was alive when I went to school and he was gone when I came home.
I’m not sure how that effected me. That question is far too big. I don’t think I was a great kid. I acted out a lot. I really enjoyed acting out. My Mum was (still is) incredible, but I can’t imagine how tough it must have been. And I hate thinking about how much worse I probably made it.
Anyway, there must have been something in the back of some doctor’s mind. They must have had an inclining that whatever killed my Dad might have been hereditary, because I went to the hospital every two years and had the same tests. Until they gave me a different test. They injected me with a drug called Ajmaline and that induced an arrhythmia that is known as Brugada Syndrome. They stopped the test because I was in danger of dying right there in the room.
Brugada Syndrome is a nasty thing. It is a form of Sudden Adult Death Syndrome. It is an abnormality in the genetic makeup of the heart that effects the sodium channels. When you have it — it means your heart can enter a dangerous rhythm. And that rhythm can lead to sudden cardiac death. This often happens when you are sleeping. You never know, and you never wake up. It generally effects men in their thirties and forties — with the average age of patients at the time of sudden cardiac death being 40. Sitting in the hospital I didn’t know any of these things. That came later, and the news changed my life. I was 32 years old.
I just want to stop here and say that I have received incredible care from our wonderful NHS. But I really wish they had told me not to Google stuff.
I was told in that first chat that due to my lack of symptoms I was considered extremely low risk. So I got the diagnosis and within minutes I was on the tube home. It was only when I got there that I started to consider what was happening. “What was it called again?” I asked my girlfriend. And I tapped it into the search bar.
Much of the positivity in this story comes later. But there is something I consider positive about those early moments. It didn’t feel like just a diagnosis for me, but for my Dad as well. Until then nobody had ever really known what happened to him. As crushing as the weight of this discovery was, something about it made me feel lighter. The only big mystery in my life had been solved. Funny thing: I can’t remember telling my Mum about it. I know I did, because she has helped me through the last few years. But I have no idea how it happened.
Things went pretty badly after that. I couldn’t think about anything other than my heartbeat. I was convinced I was about to collapse. During the day I was exhausted because at night I couldn’t sleep for fear of never getting up. I read something online that said I should avoid getting hot so I only took cold showers. I didn’t tell anyone at work at first and several times I found myself hiding in the fire escape instead of being in a meeting. I don’t want to go through all the ways that this impacted me, because even now I think about it like an explosion. It eclipsed everything, and for what seemed like a really long time it completely silenced me.
And that is when this story turns around. Thanks to some incredible people in my life: family, friends and colleagues, I was able to start talking about what I was going through. And through talking I started to rewind that explosion and put it into perspective. It was only by sharing that I was able to understand. It seemed impossible but together we started to normalise this MASSIVE THING. It was hard, but once I had spoken about it once, it got easier.
And that is why I’m writing this in the first place. Because if this is happening to you or to someone you’re close to then I want to offer an ear. Or at the least nudge you towards one. I cannot stress enough how being open has helped me through this.
I thank everyone that I have ever spoken to about this. I think you saved my life.
That statistic I mentioned earlier about the average age being 40. Before I spoke to anyone I had somehow missed the fact that this number excluded the many, many people that do not suffer sudden cardiac death at all.
This was all a few years ago. I am thirty five now. Two years older than he ever was. I know the exact moment that I outlived him. Weird, I know, but it was in my calendar. That was a rough day.
But there are not many of those anymore.
I’ve changed in the last couple of years. And I hope for the better.
I’m certainly more impulsive. I try to really enjoy things as they are happening. I’ve changed my job twice in three years because I found I wanted new challenges. I’m not scared of change. And I try to be honest. If I think people are ace then I tell them so. Because, why not do that? I’m not shy.
I started writing fiction again, which I had given up a couple of years beforehand. I write horror stories about family and monsters (yeah, yeah I know.)
And I sing and dance along to whatever is playing through my headphones. I know it looks odd but I don’t care.
Just recently someone ask me how I’m able to live in the moment. Well, I don’t really feel like there is another option. The moment is incredible.
There is only one more bit to this story.
I no longer think that I’m going to die at any given second. In fact I’m pretty sure I’m not going to, because I have regular catchups with the hospital. I get heart monitors and nothing looks odd. I really am a low risk patient. I’m planning to live for ages. And I owe that security to my Dad.
I think about him a lot. When I’m singing, dancing, or writing. I think about how even though what I inherited from him is pretty terrifying, it still came from him and I love that. I didn’t really know him, but I adore him.
I adore a lot of things now.
One final thing. Please consider supporting CRY UK. They do really incredible work.
