'A racing heart is not a death sentence'

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Living with cardiomyopathy

Living with cardiomyopathy

Normally, when people look up cardiomyopathy, they're terrified by talk of a five-year life expectancy. That's nonsense. As long as you're diagnosed early, it's definitely not a death sentence.

It's when cardiomyopathy goes undiagnosed that it can be a problem. My grandad died of a suspected heart attack when he was just 36, then my uncle when he was 41. It made the doctors take notice, and so our whole family were tested.

I was 13 then, and it turned out my heart was slightly larger than normal. I had inherited dilated cardiomypathy, although my sister hadn't.

I didn't think much of it at the time, but one day, when I was 18, I turned up at my dad's flat and found him dead. They think it was caused by an irregular heart rhythm, which brought home to me how serious the condition could be.

A few months later, I had a defibrillator fitted to make sure my heartbeat stayed regular. It was enormous and went into my stomach, but nowadays they're much smaller and are fitted into your chest.

I also take tablets every day to keep my heart pumping well, but apart from that I just get on with life. The doctors can't tell me what the future holds, but then that's the same for everyone.
I still have the odd glass of wine, but I eat well and exercise gently. However, I'm careful not to do competitive sports or to try to keep up with anyone else.

If I do have children, there'll be a 50% chance they'll inherit the gene, but I'll cross that hurdle when I come to it.

I'd advise anyone who's worried about breathlessness, dizziness or a racing heart to seek medical advice.
Louise Campbell, 31, Aberdeen

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Lionel Aloe

I myself had left ventricular hypertrophy November 2001 and had a cardiac arrest March 6th 2002.I DO NOT KNOW IF LVH leads to ARVC, but cardiomyopathy is very hard to diagnose.Whether or not if an ECHO would have helped again, only a cardiologist would know. I hope your life is back to normal and you can lead a normal life. Best wishes Lionel Aloe

Terry Perring

When I was in my 20's I was investigated for pains in the chest and palpitations. I had an echogram, a 24hr ECG and a cardiac catheterisation. They said that all was ok but my left ventricle was very powerful and had a bit of hypertrophy. I was not athletic or anything, so now, 20 odd yrs later I'm worried if they meant, what is now known as Hypertrophic Cardiomyopathy? Or is just a little bit of hypertrophy ok? IE; does ventricular hypertrophy ALWAYS mean cardiomyopathy? Thanks, Terry.

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