Sudden Cardiac Arrest Awareness – it’s not just a month to me

October was Sudden Cardiac Arrest Awareness Month. It’s now November. Now I know everything has a day or a month now and it’s impossible to keep up with what’s what. I purposefully didn’t post during October, because for us, every month is Sudden Cardiac Arrest Awareness month. The threat for us is always there… and I’m gonna be frank (Okay. Can I still be Garth?), it is always there for you too. The heart beats due to electric impulses, and if you’ve ever sworn at something electrical or own a Peugeot, you’ll know they can go wrong ‘for no ********** reason!’ Now there will obviously be a reason but it’s more often than not, a reason that someone far cleverer than you and I could understand (someone even more clevererer than me; crazy I know!)

In October Isla needed therapy from her ICD. The reason why could be 10 fold but it seems likely that she had a Torsades due to an emotional reaction. An emotional triggered Torsades is typically a Type 2 phenotype but Isla isn’t typical for a Type 3. One thing that all Isla’s doctors have discussed is a Left Cardiac Sympathetic Denervation; this effectively prevents the release of adrenaline to the heart. It’s not generally thought of as very effective for Type 3, but Isla isn’t your typical Type 3! She is supposed to be at most risk while asleep or at rest… the fact that even during her sleep Isla is never at rest may explain why she hasn’t had any events at night for years. Isla always jumps and reacts frantically to sudden loud noises, so you can bet from now until after New Year I’ll be dreading every firework.

*rant*

I don’t even understand why people bother with fireworks. ‘Oooh, bang, pretty colours’, I imagine it’s the same reaction as when the cavemen first saw fire. It’s the same every year, see one and you’ve seen them all. They just bore me now. I can sort of understand the big organised displays that are coordinated and literally light up the sky, but Ben at the back setting off his £100 Ultimate Holy Grail Apocalypse screamer which has as much follow through as a wet fart… waste of money Ben, waste of money.

*rant over*

Isla’s gene mutation is unique, most gene mutations are actually unique, so although it is in the SCN5A gene and we know it affects the sodium channel, at the moment that is all that is known. There’s no predicting how it will present.

Some of the known variants on the SCN5A gene – a slight insight into how much room there is for things to be different from person to person

It’s kind of like saying that all English people will sound the same because they’re from England. A Geordie, a Scouser, a Mancunian, a Brummie and a Cockney (all walk into a bar…there’s a joke in there) are all from the same place broadly speaking, but they all present very very differently. When talking to Dr Kaski about a case, with a gene mutation extremely close in position to Isla’s mutation, he said it’s not important. I was confused at first but now when I think about it; if you take Manchester and Liverpool, there’s 40 miles between, geographically very close, yet people sound so different. Even in our family we sound different. My mum and sister sound like The Queen, dad is very well spoken… then there’s me; some weird squeaky half Manc, half Lanc crossbreed. They say I’m not adopted but my accent says otherwise.

The Mirror (yes I know, I don’t buy it!), recently published an article about a young lad, a promising footballer, who suffered Sudden Adult Death in his sleep. Post mortem didn’t find any substance abuse or any structural cause for his heart to suddenly stop. It screams Long QT Syndrome to me but that’s just because of my experience and exposure to it. It could be any number of conditions, genetic or environmental, but stories like that bring to light the fragility of the human body. When your heart relies on hundredths of a millisecond timing to function as it should, it’s a far bigger issue than Alexa not turning on the lights automatically when she should. Damn you Alexa! Isla has been genetically tested for us to know her exact condition. We need to look further into her mutation still to learn more and tailor her treatment for the way her mutation presents itself, as oppose to how all Long QT Type 3s present. Her accent might as well be Kree in England, no one understands her.

It is not realistic, practical or even ethical for every one to be genetically tested for conditions they probably don’t have. It would cause unnecessary stress and anxiety as I have no doubt that most people would find something in their results which would deviate from ‘normal’. I have a chromosome duplication which they say is of no clinical significance. I think it must do something but god knows what. Maybe it’s why I cry every time Mufasa dies, but then who doesn’t? I’m not going to worry about it. I can only affect so much.

So what can we all do to be more Sudden Cardiac Arrest aware?

Realise that anyone, anyone is at risk of sudden cardiac arrest, even you. There maybe genetic reasons which put people at more risk, there may not, it’s kind of irrelevant, technically anyone can have one; the same way your iPad can crash for no reason. Chances are it won’t, but it can and you should know what to do. With an iPad you press and hold the power and home button for 5 seconds (hard reset – you’re welcome), with a heart you use a defibrillator or do CPR. As someone who has had to do CPR on their own child, I can tell you it’s terrifying and while I couldn’t remember everything from my training perfectly (I’d have given myself 4/10) I obviously remembered and did enough to save Isla. Trust me, it’s stressful and the training does help. So if you see any CPR courses or first aid courses on, get yourself on there and you never know who you might be trying to save. Learn how to use a defibrillator and don’t be scared to use one – they are super super easy but you need the confidence to know that you’re not going to shock someone who doesn’t need shocking. Unless you’re using a hospital defib you can’t shock someone not in cardiac arrest, they don’t let you. Failing that, watch a YouTube video on it, it’s not the same as real life but then to be fair, nothing can really prepare you fully. It might be a stranger or it might be a loved one, but with some basic knowledge you stand a much better chance of saving a life. Some may disagree but they say bad CPR is like bad sex – it’s better than nothing.

The other thing you should do is; realise how important your heart is. It’s a muscle and needs exercise and taking care of more than your ass needs to be toned and biceps need to perform the gun show. If you have a heart rate monitor on your watch/Fitbit see how your heart rate changes when you drink alcohol. It’s crazy. What we put into our body matters. I’m not saying live like a square, enjoy life, but just know what you put into your body, affects your body. Advice changes all the time but last I heard was a glass of red wine a night is good for your heart. Isla has a pacemaker, I have wine – cheers!

3 thoughts on “Sudden Cardiac Arrest Awareness – it’s not just a month to me

  1. Thank you for sharing. We are a new start up in Montreal and always looking for people to share their stories with those that are helping us pursue new treatments for LongCutie!!!

    I will share your post with our team here at LQT Therapeutics if that’s okay.

    All our best wishes!!

    Paul Truex
    Executive Chairman
    LQT Therapeutics
    paul@lqttrx.com

    Like

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