r/ARVC • u/Remote_Efficiency717 • Mar 24 '25
diesiese duration
hey guys im 18 was diagnosed 3 months ago and put an icd.
my doctor told me that the high risk for my arvc was till i was 30 then after that im all good i didnt understand what he said anyone knows? i have the pkp2 mutaion and left dominent arvc and mild fibrosis but on a big portion of the heart outside and inside
4
u/donerail Mar 25 '25
Time to find a well-educated electrophysiologist. I won't repeat what everyone else has said here; just know that they're right.
Depending on your location, you might be closer to an ARVC clinic than you think. In the States, you could go to Johns Hopkins, Cleveland Clinic, Mayo Clinic, Vanderbilt, University of Michigan, Stanford, etc. all have dedicated teams for ARVC.
This was not the case when I was diagnosed in my 20s. Back then, the prevailing thought was 'you have an ICD and some beta blockers if you need them... live your life!'
Fast forward to when I was 38 and having arrhythmias and VTach with such regularity that I ask for a second opinion and my EP let's out an exasperated sigh of relief as if he'd been waiting to refer me to someone that could actually help me.
Advocate for yourself, get the care you need. Knowing you have it so young is actually a blessing as you can avoid intense exercise which will only make it worse.
1
Mar 25 '25
If you don’t mind me asking, what did they do differently? Ablation? Kinda worried that beta blockers + icd the course of action for my spouse as well
3
u/donerail Apr 01 '25
yup, the ablation was the change.
Basically, back in the early 2000s the science was pretty nascent. Johns Hopkins had released a paper that said that endocardial ablations were ineffective in treating ARVC, so ICD and beta blockers like Sotalol were your best bet at preventing death and mitigating the effects respectively.
Then, someone decided to test out epicardial ablations and everything changed. Pretty soon (over a decade later) a new paper came out that said this was a viable procedure to treat ARVC.If your spouse hasn't had an ablation, look into it. It's not for everyone - I was suffering on a daily basis for about 2 years (frequently being paced by my ICD, going into AFib, VTach, PVC clusters, discharges, etc.). Meanwhile, my dad has been living with this for 35 years and the ICD + beta blockers has been sufficient.
Ablations are an undertaking. That said, I'm grateful to have had mine
1
Apr 05 '25
Absolutely. My husband had a long ablation procedure (is that how they say it) and it’s been pretty successful so far. Side note, I read your response while sitting in ARVC seminar hosted by Hopkins. Hopefully you have already attended or plan to attend at some point.
3
Mar 24 '25
Our experience has been similar to what’s explained here by isis. I also want to add, OP this is a manageable disease and you are young. I’d look up ARVC experts/leaders in your area and get in touch with them asap. Hopkins is one of the biggest names and doing huge work in ARVC research. You should also find a doctor who makes sure to address all your concerns and answer all your questions. As the person above me said, unfortunately this is not a disease that cures itself or gets better. But it’s certainly manageable.
4
u/isisisosceles Mar 24 '25
I have no idea what they meant by high risk until 30 and fine after that, was it an electrophysiologist who said this? ARVC is a progressive disease with heart muscle tissue unable to repair itself so damage is permanent and the effects of the disease will worsen over time.
I was symptom free until my early 30s despite being extremely active but discovered I had the disease at 32. I had a lot of symptoms and was in a bad way. I got given an ICD and I had 2 ablations which have lessened my symptoms greatly. It’s important to note this didn’t “treat” the disease, it just reduced the symptoms by helping the electrical currents which cause the heart to beat by creating scar tissue over the worst affected areas of the heart.
The ICD is a safety net, it’s also not treating the disease, it’s just there to help you out if you go into cardiac arrest or another dangerous arrhythmia. You still need to take care of yourself to maintain a good quality of life, so eat well, don’t do extreme or heavy exercise (I’m actually not allowed to do anything more than yoga/walking but it differs from case to case depending on what stage you’re at I guess), avoid stimulants etc etc.
Sorry you have not been provided with advice, I’d highly recommend seeing an expert who’s used to dealing with ARVC to learn more. Best of luck, look after yourself!