Cardiomyopathy - Active Root Ambassador Mark on his recent diagnosis

Posted by William 11/11/2019 0 Comment(s)

Bad News - Active Root Ambassador Mark talks about his recent Cardiomyopathy diagnosis.

I love Parkrun and I rather like running with/against my friend Joe. He is five years younger than me and a tiny bit faster.  When he set a cracking time this spring around the Clare Castle Parkrun I made it my business to go after beating his time.

I consider myself pretty fit for my age (56): I completed my first ultra last year, can run a half marathon or a 100km cycle ride at the drop of a hat so a 5km trot at around 5’00” per km was easily do-able.

I tried it twice and both times had the same reaction towards the end I felt my heart gallop and suddenly felt very, very faint indeed.  I put it down to poor fitness and old age until I saw my heart rate traces (below).

I know and could feel my heart was going very fast but my heart rate monitor (on a Suunto Ambit) obviously disagreed.  You can see my heart rate dropping off a cliff.

Suddenly I was very concerned and went to see my GP. My GP Mark is a runner as well as being a doctor and he took it as seriously as I did.  I was sent for an electrocardiogram (heart trace) and an echocardiogram (an ultra-sound of the heart).  The results and me were sent off to see a consultant, he took it very seriously too and sent me for a 24 hours blood pressure test and an MRI.  

The results of these were rather more conclusive, my resting pulse rate is very slow, I have mildly raised blood pressure - looks like its genetic (I don’t carry any fat, I have a good diet and don’t drink much and exercise lots), but more importantly I had a marked thickening of my heart around the left ventricle (the bit that squeezes oxygenated blood from the heart towards the body).  It looked like I had experienced a ventricular fibrillation on the runs above, but my heart sorted itself out and returned to a normal sinus rhythm – there is a risk in future it might not…

There were three likely causes, high blood pressure (got that), large amounts of endurance exercise (I do that – it leads to a condition called athletes’ heart syndrome) or finally a genetic condition called hypertrophic cardiomyopathy).  The consultant believed it was the latter as athletes’ heart normally doesn’t increase heart wall thickness to more than 15mm and mine was 17mm, but it was likely to be all three with the genetic cause most likely.  My GP wondered, and I hoped, it was simply the amount of exercise I do and with a gentle reduction in that and getting my blood pressure under control I would be sorted. Cardiomyopathy is genetic and cased by a dominant gene though I knew no one else in my family with any similar condition.  

Anyway, the doctors banned me from competitive running, no sprinting my bike up hills, no endurance events and to keep my pulse rate below 155bpm.  I was put on a blood pressure tablet too.  Though I am still sailing!

When I saw my cousin at a family event, I was just chatting about my reduced exercise regime and she said that sounded like my wonder-woman cousin, her sister, Belinda.  She’s an open water swimmer in Western Australia, she had had a similar experience to me but she also was breathless and had chest pain (I had no symptoms at all bar dizziness).  She has been tested similarly to me and also had a genetic test - she knows she has the gene for hypertrophic cardiomyopathy, so that was the genetic link sorted and I will have a confirmatory genetic test soon to prove this.

Apparently, what I have can really affect young people with potentially bad outcomes, if you experience anything weird get checked it might save your life. 

For me I’m getting used to reduced exercise levels but actually seeing more when I walk, run and cycle and enjoying company and the environment rather than pushing for that next Strava segment.  Of course I still take Active Root out with me!

More reading at https://www.bhf.org.uk and https://www.cardiomyopathy.org

Tags: Cycling