Nick’s Story: Ideopathic Dilated Cardiomyopathy

Many thanks Nick for sharing your story.

Hello my name’s Nick and I’m 52 years young.

In 2006 I came back from holiday unable to stop sweating and feeling like I’d pulled a muscle in my chest. I went to the doctor and was rather surprised to find my resting heart rate was 165 bpm and he wanted me to go straight to hospital.

I was diagnosed with idiopathic ( this means they don’t know the cause ) Dilated Cardiomyopathy and Atrial Flutter.

Cue medication, including Warfarin and Amiodarone,  and a year on the sick. I finally got a doctor to sign me off the sick in the middle of 2007.

In December 2007 I underwent an ablation which fixed the atrial flutter but unfortunately I developed Atrial Fibrillation, initially this was Paroxysmal.

By 2009 the AF had become persistent and I had started to shake as a side-effect of the Amiodarone. This was as well as the sensitivity to sunlight that it had already given me.

I was all set for an AF ablation when they tried me on some new medication ( Adizem XL ) which seemed to do the trick.

All went well for the next five years but in 2014 I was referred back for monitoring as there was concern that my heart had deteriorated and for the first time there was mention of Ventricular Damage and Spironolactone was added to my meds.

Fast forward to 2016 and following my check up I was advised that I should consider an ICD as a preventative measure as I was now at high risk of SCA.

So on July 11th I was fitted with a single lead ICD which I have named BRIAN. I have the home monitoring device so only have to have one check up a year. It’s early days yet but so far so good.

Throughout all of this I have NEVER been able to feel if my heart is racing which has its good and bad sides I suppose.

None of this has stopped me enjoying my hobbies including my allotment and fishing on my sea kayak.


The only downside of the ICD is that I had to stop welding after 25 years.

Luckily I work for a very understanding company and they have found me an alternative role in the company. On the upside, I’m not allowed to use the new induction hob at home oh dear!


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