In the beginning

On the 6th April 2014 I was brought out of a medically induced coma to be greeted by my wife and members of my family.  I was told that my wife had found me in my office in cardiac arrest two days previously, the morning after my 48th birthday.  This was all very confusing to me, but at least I was still alive.

Over the next fortnight in hospital I was watched like a newborn baby and given numerous tests to try and ascertain what had caused my heart to go into ventricular fibrillation – an ineffective quivering of the heart rather than the normal pumping rhythm.  Alas, no answers were forthcoming and so I was recommend to have an implantable cardioverter defibrillator implated (ICD), which would shock my heart out of this dangerous rhythm should it ever happen again.


A day after the implant I was left to go home and try and put my life back together.

After the excellent care I had received in hospital it was a little discomforting to be let home with seemingly no answers or real support in place except from my family.  Despite being hardly able to walk to the end of the road and everything taking extraordinary amounts of effort to do I was not offered any rehab of any sort.  I’ve since come to realise this was because I feel between the cracks of the care pathways for cardiac patients.  In essence there was nothing wrong with my heart, it just stopped for some reason and worryingly no one knew what that reason was.  I had been told my heart was in very good shape and that the cardiac rehab was for patients who had suffered a heart attack or surgery.  I’d had neither of those so didn’t qualify.

As I had no memory of my event and knew little of what I had been through in hospital I turned to Dr Google.  Which admittedly is not always a good idea, but I wanted to know more about what had just turned my life upside down.

Over the next few months I came across various websites and forums and looked at the British Heart Foundation, Arrhythmia Alliance and found that I didn’t really seem to fit in or equate with who their target audience was.  Yes, my heart stopped temporarily, but the issues I was having to deal with were not really heart related.

I then found Inspires SCA group, which is a US based health website that has forums for pretty much any condition you can think of.  Although not overflowing with information it was populated far more than any others I had come across before.  Being US based it’s main contingent were from there, but there were others from around the world and importantly for me, a number based in the UK.

After several months of reading peoples stories of hope and at times desperation there was talk of us getting together.  This went on for a little while and then I decided to just put a mark in the sand and see who would come along for a bite to eat and a few drinks in London.  I was pleasantly surprised to find that a number of people were willing to travel from all over the country to get together.  After some tooing and frooing we set a date and venue for the end of February 2015 in a London pub called the Mulberry Bush on the south bank.



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