Recently found I am likely to have ARVC

[Hami_14]

Hello all, I’ve recently found out I’m likely to have ARVC. I’ve had an episode of AF in past that very almost required a cardioversion and my latest heart echo seems to point to ARVC. I’m awaiting further investigation to confirm the diagnosis but it seems to be fairly evident to be ARVC from my GPs understanding and the specialist heart echo report.

I’m in my 30s with a young baby and was until this week a very active cyclist doing roughly 100-150 miles per week. If I’ve read up on this condition correctly I’m about to have my world turned upside down as the disease progresses faster under moderate to intense exercise and theres seemingly no cure. That’s pretty much cycling out the window and all the other sports I’ve enjoyed in the past which affects me most when I think about possibly not being able to do these with my son.

I’m typically not one to worry about anything in life outside of my control (living by the phrase, it is what it is) and my reasoning with this is many don’t with serious heart conditions don’t get to find out until its too late so I’m lucky. With that said and my pragmatic brain kicking in I’m interested to know if anyone on here finds themselves in a similar position and how it may have went for them and what they have changed in their life to manage the condition.

[Cycleforfun]

Hi Hami_14

Like you I was a keen cyclist/runner out 3/4 times a week, always chasing a Strava segment or PB. In Dec 2022 I was diagnosed with ARVC. I have subsequently had an ICD fitted and had a couple of ablation operations. As you suggest it did turn my world upside down and it did take a bit of time to adapt to but I have now purchased an electric bike and instead of pushing myself physically I go out exploring the countryside focusing on my wellbeing and I absolutely love it. My runs have been swapped for long dogs walks and an unexpected benefit is my wife (and kids) now come out with me on their bikes, (now I’ve stopped being competitive). I do have a different outlook on life and try and live for the moment, it just means doing somethings a little differently, which is not always a bad thing.

PS I found doing strength training (dumbbells) gives me my exercise “fix” and I can keep my heart rate down (<110bpm)

Good luck for the future.

[Hami_14 in reply to Cycleforfun]

Hello Cycleforfun,

Thank you for your reply, it’s greatly appreciated. It’s encouraging you’ve found a way to retain exercise in your life and I’ve taken a bit of comfort from your experience of ARVC. I’d not thought of electric bikes as daft as that sounds and to be honest for years have said I’d never entertain one personally but now as things are they might provide the opportunity to continue enjoying cycle where it may otherwise not have been an option which is great. I enjoy gravel riding so perhaps with it being on flatter terrain and slower speeds this is something I could continue possibly even do without an electric bike. Dumbell training is a great idea as well. I’ll definitely be exploring that option and possibly swimming. I guess with all these things I’ll have to monitor my own heart responses to each activity and work out whats safe and not for me to continue doing.

In terms of work and driving did you find this condition had any impact on either of these? I tend to drive a-lot for work and sometimes long distances so another aspect of my life that my need reconsidered.

Sorry for the long response, it’s just great to speak with someone who’s been through this and clearly found a way to make it work.

[Cycleforfun in reply to Hami_14]

Hi Hami_14,

Same as you I had never considered an electric bike, but circumstances change and I have found it to be a life line. I got rid of my road bike but I have kept my gravel bike, rides tend to be more technical and slower and so less strenuous (lower cardio). I purchased an electric MTB mainly because I had an ICD (defibrillator) implanted and was unable to drive, the electric bike become my primary means of transport. When I go out, I do use a heart rate monitor, I find a polar chest monitor better for longer rides but I use my Apple Watch if I’m just popping down the shops. There are some great light weight electric gravel bikes available (Cannondale Neo, Specialized Creo SL, Canyon Grail). There is no need to give up cycling, talk to your medical team, find your limits and find a solution that suits you.

You asked about driving, as I have mentioned, I have an ICD so have been unable to drive until I went 6 months without a shock from my ICD. I have just re-applied to DVLA and hope to be driving again shortly. Without an ICD I don’t believe you should have any issues but you will need to check with your medical team.

[Hami_14 in reply to Cycleforfun]

Thankyou cycleforfun, that’s really helpful. My brand new road bike will have to go no doubt! Such is life.