The unexpected diagnosis – ARVC

I was diagnosed with ARVC (Arrhythmogenic right ventricular cardiomyopathy) in April 2020. Nearly aged 40, I had participated in sport competitively for almost 30 years. From the age of 8, I ran my first competitive 10k in under 1 hour. In my teens, I played cricket as a batsman for my local teams Highland CC and Nairn CCC and in my 20s I played for Aberdeenshire CC as well as taking up squash. In my early 30s, I began running and cycling. I ran several 10km races and completed the Aberdeen 1/2 Marathon. In 2015 I took up cycling, taking part in many an Etape (Caledonia and Loch Ness) and even cycled coast to coast of Scotland with my brother, completing 300km unaided over two days.

As the article by cycling weekly will confirm, “there had been some warning signs”, albeit I put them down to work stress and an unexpected diagnosis of Coeliac based on the GP’s discovery of low iron levels. On 7th April 2020, I had a cardiac arrest whilst on my own, riding my bike, and am simply lucky to be alive.

My blog on DamoBird365 and the videos I create on YouTube are my new hobby and focus, beyond my amazing wife and 3 kids of course. ARVC comes with the caveat that strenuous exercise is now forbidden. The nature of the condition is such that, there is still a lot of unknowns, but firstly I have to be grateful that I am alive. 1 in 10 survive a sudden cardiac arrest in the UK – Improving chances of surviving a cardiac arrest | BHF.

As well as the physical scar and large smartwatch sized impression of the ICD on my chest, that is wired into my heart and waiting for my next arrest, mentally I have had to battle and accept that life is not always about what you cannot do, but more about what you can. Buying an Ebike to enable me to go out with my family and friends has been one of those moments that still brings me great joy, especially now that I can beat them uphill! But please don’t tell me that riding an E-bike is cheating. Consider it the equivalent of a brisk long walk, with the motor assisting me on the strenuous parts.

There are still a lot of unknowns. Whilst ARVC is predominantly genetic, I am gene elusive. Or quite simply put, I have the symptoms, some of the tell tail physical heart signs, like ectopic beats and heart wall scarring, yet I don’t have any known gene mutations. In time I hope medical science discovers the cause and a possible permanent solution before the damage gets too bad. Confusingly but also thankfully, my brothers and parents show no sign of this disease and at this early stage, my children’s hearts look good too. We are lucky that the NHS can and will keep an eye on them regularly as they progress through life.

For me, I won’t get “better” as such but I have learned to live with a new lifestyle. E-biking and walking are about as strenuous as my efforts can get and quite simply, I hope that the symptoms don’t get any worse as I live within my new limits. That’s why you find me hanging out on forums, helping the community, and really enjoying speaking to people across the world. Life is too short!

I have shared this story to raise awareness of my condition and to raise money for the British Heart Foundation and Cardiomyopathy UK. If you would like to sponsor either charity, feel free to use my links below.

Cardiomyopathy UK

British Heart Foundation

Early 2023 Update

During late 2021, the whole of 2022 and into 2023 I experienced SVC obstruction as a result of my ICD installation. Read more about this here Living with ICD complications – DamoBird365