Looking for other young people with ARVC

[LoveRunning22]

Hello,

I'm 31 years old and currently trying to come to terms with a probably diagnosis of Arrhythmogenic right ventricular cardiomyopathy. I'd like to connect with any other young people with this condition, for advice and moral support.

Is there anyone here with the same condition?

Thanks

[Georgeygoose94]

Hey! Not quite the same but I’m 29 and was diagnosed with heart failure secondary to idiopathic dilated cardiomyopathy back in July. The last thing I expected at my age but apparently it’s becoming more common. Happy to chat more ☺️

[Pooj_24]

Hey, not the same diagnostics but I’m 28 and just had a stint of endocarditis in July. Ended up revealing I had a modern leakage in my valves. So ended up having to replace my valve with a metal one. Safe to say, my life has officially changed. Happy to talk as I feel I am still coming to terms with this.

[LoveRunning22]

Hi Georgeygoose94 and Pooj_24 . Thanks for getting in touch!

Sounds like we all have slightly different issues but are probably experiencing very similar feelings of having to completely rethink our future.

I feel like a lot of the opportunities I thought I was going to have (travel, ultramarathons, competitive running, cycling etc.) have suddenly been taken away from me - and i'm generalising here, but I think this is a completely different scenario to being diagnosed with something so limiting at an older age, when you're maybe less interested in doing those things, or you've had more chance to 'live'! Have you both been feeling the same? And if so, any advice for coming to terms with those feelings?

[Pooj_24 in reply to LoveRunning22]

Hey LoveRunning22

I’m feeling the exactly same! Like freely living our lives as before where didn’t know anything different. Know it feels like it’s curbed and we have to be cautious from now on. It’s the anger part for me as in my situation, all could’ve been prevented.

This week especially since it being 7 weeks since surgery I’ve been feeling up and down. My family around me have been such a factor where I can talk to them about what I’m feeling. One thing which does bring me some sort of comfort, is that I’m not alone. These forums like this, remind me that my feelings and thoughts are all real and justifiable. Some sort of validation in a weird way. Something else I’ve been doing is, getting out for more walks and fresh air with podcasts and music like I used to previously. Music is something where I can be in the zone and feel comfort. Not sure if that’s something you can do or if you feel the same? Also therapy is something I’ve thought about too.

[Georgeygoose94 in reply to Pooj_24]

Hey,

I personally can’t relate to the running, more of a slow ambler here. But I get where you’re both coming from. I had such an active life and work in social care so running around like a headless chicken is in the remit! Getting so sick was so hard as things I usually did so easily on a daily basis (eg. popping up the stairs) became so so hard. I really struggled to see my friends doing what I had always done with such ease, jumping on trains up and down the country/travelling, while I was recovering and it was really hard not to have that ‘left behind’ feeling.

As a therapist myself, I would always recommend therapy!! I’m hoping to have some more myself to help come to terms with it all, but for now I give myself time to mourn and wallow a bit and then brush myself off and get on with it. Nobody is keeping this positive attitude 100% of the time, get that balance! I’m still figuring it out, I hope you can too 🙂 xx

[EmmJayTea]

Your nickname has brought a tear to my eye. I too love running and was diagnosed with ARVC in August (BTW it is now called ACM in a lot of places - worth noting!). I'm in my mid-40s and my symptoms started 2.5 years ago whilst at the gym. They've been getting steadily worse until I had a sustained polymorphic VT event at the beginning of August.

So yes, I'm definitely happy to chat more!

It's still relatively early days for me; I've accepted the diagnosis, but have not yet fully come to terms with the massive lifestyle changes; it is a huge thing to absorb mentally. I struggle if I see someone out running or if I have to walk past the big windows of any of the national gym chains. Thankfully, I am getting psychological support through my heart clinic. This is worth its weight in gold. If you are offered any support like this - take it! I am starting to see a bit of light ahead.

Any idea how long it will be before a diagnosis is confirmed/ruled-out?

Sending you lots of positivity and courage! You are not alone. 🙂

[LoveRunning22 in reply to EmmJayTea]

Hi EmmJayTea 🙂

I'm so pleased to hear you are starting to see light ahead! Have you found anything that you can safely do that you've been able to 'replace' your running with? I've tried some yoga and low intensity things like that, which I have really enjoyed, but I've not yet found anything that gives me the same boost of endorphins that a run could.

What does your treatment look like now? Are you on medication? Do you can an ICD?

My symptoms started just over a year ago, multiple sustained VT episodes, always induced by running. Ive had two ablations now which have each found and fixed multiple pathways, but new arrhythmias seem to form very quickly, as I always seem to be back in the same boat within a few weeks. I've just come off flecianide as I was having breakthrough VT episodes, and started on Verapomil. I've got another cardiac MRI coming up in Jan to see if the ventricle walls look like they have changed since my last MRI a year ago, which I think will be the decision point regarding the diagnosis.

Thank you for the positivity and courage! It feels quite cathartic to even be able to talk about the last year with someone who will understand how it feels!

Thanks!

[Hidden]

Hi, I did have second thoughts on replying, but, I will anyway, although I have to say I've not had ARVC and I'm quite old at 62. That said, you'd have seemed old to me when I started out on my so called 'journey', like many others on here we were much younger than you are now.

My point is that whilst you may feel cheated in some ways, you will learn to adapt. Give yourself the best possible chance to have a fulfilled life, whatever you do, don't feel sorry for yourself, life's what you make of it. In time come to look at what you can do as positives, take control and be in charge. There maybe things you can't do that you wanted, but, they'll be replaced with things you can.

For what it's worth, I've never let my heart problems get the better of me, have a look at my bio for a glimpse, which doesn't begin to tell the story of my early years, teens and twenties.

I have a lot empathy for someone in your position, and can understand where you're coming from, but, dont let yourself become a victim mentally.

Good luck.

[TasteLessFood4Life in reply to Hidden]

Thats the spirit!

[CountryLabrador]

Hey. I was diagnosed with ARVC at 28 (I’m now 38) and am still coming to terms with the diagnosis. I’m fortunate in the sense that I am not yet medicated but the prognosis is always something intimidating. Always happy to chat more if it would help 😊

[mattsolo]

Hey I just found out about this platform but I was diagnosed with ARVC at age 15 and I am currently 19. I have never met someone with the same condition as me so this is new for me.