Story about Cardiomyopathy .

Matt's Cardiomyopathy Story

Jan 25, 2016


My cardiomyopathy story starts in 1969, at the age of 5, when my 20-year-old brother Michael died, having made a short dash from work across a London road to meet our elder brother Paul for lunch.

 

I say my story starts here, but I have recently been handed some research into my maternal grandfather’s family tree, in which there are several accounts of infant or early adult death as far back as the 18th century - but then that was not unusual and could have many other causes.  That said, a “cot death” was recorded for my sister Pamela several years before I was born.

 

Michael’s short dash set up a fatal arrhythmia and he collapsed in the street.  His cause of death was recorded as “asymmetrical hypertrophy of the heart” and resulted in screening for familial heart conditions for myself, my sister and two brothers.

 

Although I didn’t fully understand what it meant, I learnt as I grew older that I had been identified as “potentially at risk from aortic hypertrophic stenosis” and my parents ensured that my teachers (and anyone else who might have a need to know) were aware of this and made allowances, whilst not restricting me from any activities I could take part in.

 

And so it was that my formative years were very normal - I just wasn’t one of the most sporty kids, although I could walk or cycle for miles on end, but then I would sleep for England.  I got into trouble and did stupid things like smoking and drinking, perhaps in an attempt to be cool and accepted when sport wasn’t my forte.

 

As a young adult, I continued with my fairly decadent lifestyle and when Mum died in 1985, I was on my way home from 2 months hitching and roughing it around France and Spain.

 

From then, I found employment in quite physically demanding jobs, such as overnight shelf filling at a large new superstore and then in the workshop of a fitted bedroom company, lifting heavy sheets of board onto machines, loading vans and helping to fit the finished product, combined with a social life based mainly in pubs… …what heart condition?

 

Then I met Pauline and as a means to chatting her up, joined the local badminton club and found a whole new social scene.

 

After badminton, we would all pile up to the pub until the early hours.  In the summer there would be parties involving games of rounders, or the annual Three Hills Walk, which I would complete with ease.  Trips to Cornwall were great fun, walking the coast path to work up an appetite for pasties and yet more beer.

 

In 1992, we moved into another community, with another badminton club and it would be another 6 years of high activity in terms of work, DIY and social life, before my cardiomyopathy raised its head - more than 30 years after Michael’s passing - it was June, 1998.

 

Since the late 80’s, as well as our proper jobs, Pauline and I had been working weekends for an outside catering firm, often straight through from early Saturday morning to daylight on the Sunday.  This particular year in May, I had taken a week’s holiday from my full-time job, to work at a polo tournament in Windsor, which involved 14-hour days running two bars, jumping in and out of trucks and hauling beer kegs back and forth.

 

On a Tuesday evening in June, we were playing our usual games of badminton, with Pauline and I on opposing sides.  She served short and I left it, but it landed right in the corner and she won the point.  So the next time, she tried it again.  This time, I lunged forward but still missed and she won the point again.  I remember standing upright and stepping back, feeling a hot rush to my head.  The next thing, I was waking up from a deep sleep to the sound of voices, thinking Pauline was bringing me a cup of tea in bed.

 

I heard later that I had gone down quite slowly to my knees and rolled over onto my back in such a way that they thought I was messing about because I’d missed the serve again - it was only when my badminton partner realised there was something wrong, that the atmosphere changed.

 

We didn’t call for an ambulance or go to A&E, as I felt OK and was coherent, but went to the GP first thing in the morning, where a young doctor examined me and asked if I’d ever been told that my heart sounded as if it was on the right hand side of my chest.  She then said that she would like me to see a Cardiologist in Warwick and when I agreed to make an appointment, she explained that she had already done so, for that same afternoon.

 

From Warwick, I was referred onward to Coventry, under the care of a Dr Mattu, who I never met.  I was seen by his Registrars and Technicians and have since heard him interviewed on the radio, having been cleared of allegations which had resulted in his suspension at that time.

 

During the next few years, I experienced a few more blackouts - typically on going from rest to exertion - but no amount of ECG’s, 24- or 48-hour recorders or tilt tables identified the cause.

 

However, it was one of the Technicians who noted a significant drop in my blood pressure during a treadmill exercise test and suggested that I may be better off visiting the Heart Hospital in London, which is where I first heard the term “hypertrophic cardiomyopathy” (HCM) from a specialist nurse called Stephanie Cruickshank, who also introduced me to the support and advice available from the CMA.

 

Now I was in the right place - under the specialists in Prof. Perry Elliott’s team.

 

There followed a new series of tests - ECG, echo, stress echo, exercise, x-ray, etcetera - and discussions with the medical team.  Each visit would be a day out for me, travelling from my home near Stratford-upon-Avon to take the train from Banbury, a brisk walk from Marylebone Station to Westmorland Street (via the Conran Shop when Pauline discovered it) and lunch in the King’s Head just over the road from the hospital.

 

At one point, I was sent for two days of tests at the Royal Free, to check for Anderson Fabry (or Fabry’s) disease, which can present similar problems to HCM due to build-up of fatty deposits in the heart, amongst other organs.  Thankfully, this was ruled out and we were back to dealing with the HCM in its own right.

 

Now came another new term for my vocabulary. Due to the combination of risk factors - sudden death in the family, personal experience of blackouts, plus sufficient thickening within the heart - it was proposed that I should receive an “implantable cardioverter defibrillator” (ICD) as a precautionary measure.

 

A what?  A defibrillator?  Implanted?  Forever?  I have a choice?  What will it do?  How will it feel?  Will downsides outweigh any benefits?  Do I really need it?

 

I’m a list maker, so I wrote it all down.  There were two columns - for and against - and an area for random thoughts.  Some answers were obvious. Some answers generated new questions.  Then I remembered I wasn’t alone in this.  Pauline’s life had been changed as well - I realised she was subtly checking on me if I’d been quiet for too long, and in return, I was purposely making noises if I felt she might be worrying - so we talked.

 

I also talked to people online, through the dedicated message board, or forum, newly established by CMA and populated by members with real life experience of what I was now going through.  They were sympathetic, helpful and non-judgemental, which helped me accept that an ICD was right for me, if only for giving Pauline and myself a renewed sense of security.

 

The ICD was implanted in 2004 and the CMA remained my primary source of reference, helping me to understand the recovery process and what to expect from my new friend.  Very soon, there were new members springing up, asking questions I was now able to help with, by sharing my experiences - and that’s the way it works.

 

In addition to the message board, Pauline and I attended the AGM and information days run by CMA, where we were able to hear from top experts in the understanding and treatment of cardiomyopathy - and more importantly, to speak to them directly and ask questions that mattered to us.

 

At one such event, a session was run for the relatives of patients, whilst the patients attended groups relating to their own conditions.  This was a master stroke by CMA, who knew that it was not just the patient who needed support, with some finding it difficult to cope with someone who now needed their help more than before, or others being shut out by a partner who was in denial.

 

Of course, the work of CMA is much more widespread, including improvement of awareness, the provision of specialist personnel and education of the medical profession, but the focus has always remained the support of people living with heart muscle disease.

 

So here we are, more than 10 years after my ICD-Day and CMA is evolving into Cardiomyopathy UK, with a brighter image, renewed vigour and a more dynamic fundraising team, and with social networking playing a major role in the support system.

 

 

I’m now over 50 and have less need of support for myself, but Cardiomyopathy UK will remain my go-to place for definitive answers to any issues surrounding my life with HCM and I would recommend their services to anyone who needs them.

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