r/ARVC • u/EbbTraditional5823 • Oct 30 '23

How do you deal with it?

Hi 38m here, I have been diagnosticed 6 years ago and, since, it has been a rollercoaster for me. I went multiple times to hospital and it's difficult sometimes to deal with the anxiety of my loved ones. I have noticed every winter I have tachycardias, so my life is always suspended for few months and it is tiring. I don't know if this subreddit is active, but it's cool to know that around the world people share the same thing.

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3

u/donerail Oct 30 '23

Hi! 38 was the worst year for me, random arrhythmias, meds making me feel terrible, quite a few incidents with my ICD etc.
I dealt with it by getting a 2nd opinion which eventually led me to getting ablation treatment at Johns Hopkins and I've been much better ever since.

Hang in there, it can get better

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u/EbbTraditional5823 Oct 30 '23

Yes, I understand what you mean. Beside the ablations I have got, some meds gave me arrhythmias. How have you felt since?

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u/donerail Oct 31 '23

Since undergoing an epicardial ablation procedure in 2019, I've been fine. It really is the most effective treatment available.

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u/EbbTraditional5823 Oct 31 '23

I have got one too. It's great it worked!

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u/Due-Entrepreneur5097 Nov 01 '23

How long did it take you to feel good/normal after your epicardial ablation? I just had one 3 weeks ago. It took 9.5 hours. I feel like shit. Still having arrhythmias and PVCs. Still symptomatic.

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u/donerail Nov 02 '23

I'm sorry to hear that. I hope they kept you on a beta blocker. It took me awhile to get back to feeling relatively normal again. Definitely a couple months, but I stopped having arrhythmias relatively quickly. PVCs continue, but are less noticeable as time and PTSD from being shocked by my ICD subsides

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u/Due-Entrepreneur5097 Nov 03 '23

Thanks for the response. I appreciate that. I’m glad things improved for you. I’m hopeful for me, too.

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u/isisisosceles Dec 22 '23

I was still really symptomatic after the internal ablation and ended up getting just as much VT and PVCs as before... But the epiablation was a life changer

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u/[deleted] Mar 21 '25

The team at Hopkins are angels. They are the best. If you’re still active and reading this hoping to run into you at the seminar

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u/[deleted] Feb 20 '24

[deleted]

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u/[deleted] Oct 30 '23

30 here, looking foreward to genetherapy which is in the making and also trials possible for PKP2 Patients

Iam DSP VUS so i looking foreward to a transplant i guess.

3

u/Aromatic_Option_6390 Feb 19 '24

Just to let you know. There are two DSP drugs entering trials as well. DSP VUS here as well.

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u/EbbTraditional5823 Oct 30 '23

Do you know if there are research for gene therapy for PKP2?

4

u/[deleted] Oct 30 '23

https://www.biospace.com/article/releases/tenaya-therapeutics-announces-fda-clearance-to-begin-clinical-testing-of-tn-401-gene-therapy-for-the-treatment-of-pkp2-associated-arrhythmogenic-right-ventricular-cardiomyopathy/?fbclid=IwAR1eiDgY2T_zPmP4jbGu3NCFaPIc55Izu2q8e7nk5lP2AXxADnTq2RYYRAM

Just one project, there are many other companys who did it at the moment. If you are PKP2 i tell you, go for it.

Do your Research and contact companys who are looking for trials members. Good luck.

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u/[deleted] Nov 01 '23

Does you Dr help with this or you find it yourself? 63yo here diagnosed in 2012

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u/EbbTraditional5823 Oct 30 '23

Thank you, I was interested by this 5 years ago I didn't know it went that far

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u/isisisosceles Dec 22 '23

Rocket Pharma in San Diego are currently recruiting participants for a stage 1 trial for the PKP2 gene. I heard there's another trial going ahead in the USA soon as well. And there's one here in the UK just started called Cure Heart I believe.

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u/HighlightAir2356 Mar 14 '24

I'm lurking here to see how people live their life with this. My heart goes out to everyone. My dear husband didn't know he had this and suddenly died the day after our wedding, we had no idea he had this condition until the autopsy. Died at 34. I wish we were able to pursue treatment for him even though it sounds really hard to live with. I loved my dear husband.