Worrying about ARVC (WARNING: may induce anxiety)

[Jack4440]

Hi everyone,

About 8 months ago I got the all clear from a cardiologist regarding palpitations and on exercise. I got an ECG, 24 hour ECG and an echocardiogram. All normal. But then I read that this condition (a type of heart disease) can be extremely difficult to diagnose and is responsible for sudden death in athletes and those who exercise. The first symptom is usually death. Your heart basically falls apart as the faulty gene means your protein that holds the cells together simply doesn't work and your heart tries to repair the tears with scar tissue, eventually you die. It's terrifying and the thought it can go missed has gotten me worrying over it.

I'm now scared to cycle or exercise incase I'm that person who has it and it's been missed. It apparently affects around 1 in 1000 people which is quite high.

I need someone to slap me with some rational thoughts and give me their opinion on it. It's always a thought at the back of my mind and while I might well have it and not know, I'm having difficulty trying to enjoy life.

My parents and siblings have no known heart problems.

Thanks

[ServerError]

It's up to you to come to terms with what you've read. I'm not convinced by that incidence level - look how many athletes there are around the world and just ordinary people getting exercise.

You can drop dead at any moment and at any age. Any of us could have an undiagnosed and difficult to diagnose condition. That's just a fact of life. But what's the point going around worrying about it? If death is the first symptom, it's even less worthwhile worrying. It's not like you'll suffer or know anything about if.

There are certain things that you just have to let go of because there's nothing else to be done.

[nomorepanic]

Hi

This is just a courtesy reply to let you know that your post was moved from its original place to a sub-forum that is more relevant to your issue.

This is nothing personal - it just enables us to keep posts about the same problems in the relevant forums so other members with any experience with the issues can find them more easily.

Please also read this post:

http://www.nomorepanic.co.uk/showthread.php?t=213239

[Jack4440]

Thanks ServerError, I think I got a 404 error when trying to find my rational brain.

You're right, and I knew this, however; it someone makes more sense hearing from it from someone else. If we worried about what we might have, we would never leave the house and let life pass us by.

Thanks.

[GiantMogwai]

Hi everyone,

About 8 months ago I got the all clear from a cardiologist regarding palpitations and on exercise. I got an ECG, 24 hour ECG and an echocardiogram. All normal. But then I read that this condition (a type of heart disease) can be extremely difficult to diagnose and is responsible for sudden death in athletes and those who exercise. The first symptom is usually death. Your heart basically falls apart as the faulty gene means your protein that holds the cells together simply doesn't work and your heart tries to repair the tears with scar tissue, eventually you die. It's terrifying and the thought it can go missed has gotten me worrying over it.

I'm now scared to cycle or exercise incase I'm that person who has it and it's been missed. It apparently affects around 1 in 1000 people which is quite high.

I need someone to slap me with some rational thoughts and give me their opinion on it. It's always a thought at the back of my mind and while I might well have it and not know, I'm having difficulty trying to enjoy life.

My parents and siblings have no known heart problems.

Thanks

Hi Jack,

I went through the whole ARVC pipeline with the NHS about 12 years ago and know someone who actually has it. I don't have ARVC to an 80% degree of accuracy but had to deal with being told I was actively being investigated for it for months and months. It was hell.

In both cases, with myself and with the person who actually had it, the initial symptom was a severe blackout.

With the person I know who has it, he blacked out whilst riding his bike, was investigated swiftly, and is now getting the proper treatment for it. He is alive and well.

In my case I had a blackout with injury - large scrapes on my back as i fell past a door - and as I came to I blacked out again. When i went to the hospital there was an abnormality on my ECG and subsequent abnormalities on at least two of the other tests, but in the end they felt i didn't have it.

The stress was the biggest killer in all of this. I still feel the impact of that stress 12 years on. I wish I had known how to deal with it better. These days diagnosis is quicker - the time the NHS took was the main stressor.

Given your lack of any negative outcomes on the tests, the absence of any severe blackouts with injury, and the lack of family incidence of heart disease, i think you can feel fairly relaxed about this one.

Obviously I am not a doctor and cannot give you a qualified medical opinion, only my own, but that is what I think.

In my case whilst going through this scare and since going through this scare I have avoided high intensity exercise which have been know to exacerbate these conditions. That still theoretically gives me a huge range of options for exercise.

[Jack4440]

Thanks for the detailed response. I have a chap at work who is blacking out and actively being investigated and had a tape fitted under his skin to record his heart rhythm. Freaked me out. I've never lost consciousness.
I think all we can do is take the advice and live life to the fullest. I waited 11 months from visiting my GP to finding out the all clear, it was hell too. The stress and anxiety was horrific and lead me to some dark places.

[GiantMogwai]

In my opinion once they introduce the term ARVC they should have you done and clear in 3-4 weeks. Anything else is cruel.

Also, I would say there is a distinction between this kind of blackout and passing out. I have passed out a few times from exercise, but not this kind of blackout. It was very fast and they specifically asked me if i'd injured myself in the process. Its that kind of thing.

Take care of yourself, forget about it from now, live long and prosper.

[weallmissedme]

You weren't kidding when you said it might induce anxiety. I searched for back injury and ended up here now I am terrified of this being responsible for my chest pressure and palps.