Paul Roome - a runner's diagnosis of cardiomyopathy

GP and former dedicated runner Paul Roome, aged 41, talks about how Cardiomyopathy UK helped him to come to terms with a diagnosis of arrhythmogenic right ventricular cardiomyopathy (ARVC)

I’ve enjoyed running for many years. My school was generous enough to allow me to take part in
cross country matches even though, at the back of the field, I didn’t help their points total.  I completed a half marathon when I was 17 but couldn’t walk for days afterwards.

During my time at university and after starting work, I had an exercise free decade and turned into a bit of a pudding.

So I shed the excess weight and started running again, in particular enjoying off-road runs which were a great way to see the countryside around Tunbridge Wells.

in 1999 I joined the Tunbridge Wells Harriers and running became a large part of my life, with early morning runs with friends before work and club runs with the harriers on a Wednesday night and at weekends. I managed to get my marathon time down to 3hrs 11mins and could actually walk afterwards which was a great improvement.

However in 2007 aged 38 I noticed spells at the end of a hard run or race where I’d feel light headed as if I was going to faint. As this only occurred when really going for it, I thought it was just due to pushing myself past my capabilities. I could slow down and feel fine and then go on to finish the run.

At this time I picked up a hip injury and didn’t run for a few months. Just before Christmas in 2007 I was walking up the road not far from home and had the same faint feeling come over me that had previously only happened when running.

The next thing I remembered was waking up on the grass verge of the pavement, splattered in mud having passed out.

I now figured that this wasn’t quite a normal thing to happen (all those years of training to be a GP had paid off), so I saw my GP and was referred to a cardiologist.

Tests showed my heart was going into a rhythm called ventricular tachycardia (VT) on exercise, and it was also producing a lot of extra beats (ectopics) during the day as well. I had a treadmill test while hooked up to an ECG and went into VT again while only walking on the treadmill.

This was quite dispiriting, as I seemed to have gone from someone who could run for hours to not being able to go for a walk without going into a life threatening heart rhythm.

In other ways I felt lucky in that I’d been given a second chance. I realised that when I’d passed out previously or gone into VT when running, I was at risk of suddenly collapsing and dying which would have been a worse scenario from my point of view! 

I was always shocked and saddened when reading of a runner collapsing during a race or a footballer during a match, and felt grateful I could try and do something about it now as I’d had a warning.

Further tests showed the right side of my heart was slightly larger than normal and not pumping quite as well as it should.

Taken with the other test results, this meant I probably have a condition called arrhythmogenic right ventricular cardiomyopathy (ARVC), although I didn’t have enough classical features to be a definite case under the current classification, but that was the working diagnosis.

I started betablockers to slow my heart rate down. This would hopefully make going into VT less likely. I also had an internal defibrillator (ICD) implanted into my chest so that if I did go into VT again the device could take over my heart rhythm and try and pace me out of it, or if that failed it would give an electric shock to restore normal rhythm.

This did make me rather nervous as the thought of potentially getting zapped at any time was not appealing, but as time has gone on it’s got easier to live with. Thankfully it hasn’t gone off yet, but it’s reassuring to know it’s there just in case.

I came across Cardiomyopathy UK while searching the internet to look for more information on ARVC while my diagnosis was being made.

Cardiomyopathy UK is the prime source of information on cardiomyopathy out there and without them I would have felt lost. It came as a great relief to my family and me to be able to initially read about the condition and the ICD and what having these involve. 

I attended an information day being held by Cardiomyopathy UK close to where we live, and it helped immensely to hear the stories of other people and to feel that I’m not the only one with the condition.

It gave me an opportunity to speak to specialist cardiomyopathy doctors and nurses, ask questions and get more information. This advice has particularly helped me to start running again very gently, keeping my heart rate nice and slow.

It’s a huge personal leap going from not being able to walk up the road to going for a slow jog.

Having the collapse and the ICD meant I couldn’t drive for six months. So I took to walking much more than usual. I’ve continued to walk and also ride my bike as much as possible instead of driving, even though I have my licence back now.

I still go to Tunbridge Wells Harriers’ club nights, although now for a drink rather than a run, but I hope I can continue my slow jogging to be able one day to plod around at the back of the pack once again.

With friends from the club I’ve been able to continue my love of the countryside, walking the Cleveland Way in October, as well as other walking trips to the Lake District and Yorkshire with family and friends.

With the help of Cardiomyopathy UK I feel a lot more positive about the future, and am very pleased that the Tunbridge Wells Harriers agreed to use the fundraising aspects of its annual half marathon to help them on a regular basis.

Back to supporter stories