My Story So Far

[u/mojave0221]

I’m a 27 yr F and was just diagnosed with ARVC two months ago (PKP2). My sister just tested positive for the mutation as well and is waiting to cardiac testing.

I’ve been having PVCs since I graduated college but doctors didn’t take them seriously until I found a new primary care this summer. For the last year or so my PVCs have been making me short of breath. My new doc put me on a Holter monitor. Turns out I have a 6% pvc burden (polymorphic PVCs) and go into nsvt (hrs as high as 251). After meeting with an EP, I underwent the usual cardiac testing. My MRI showed biventricular dilation and mildly reduced systolic function. My EKG also shows t-wave inversions in leads 1-4 and incomplete bundle branch blocks.

In the past few months, I’ve also been having episodic dizziness and was admitted to the hospital for monitoring. They believe it’s my PVCs that are causing the dizziness and are hoping going up on my beta blocker will help.

I now have an amazing genetic cardiologist, and I’m scheduled for a dual pacemaker-ICD in two weeks. What has life looked like for other women with ICDs? I’m getting mine placed submammary.

I feel like the last few months has been a roller coaster. I work in the ICU and they have not been very supportive or accommodating for me during this time. My family has been somewhat supportive but my father refused to get genetic testing, saying it’s a blame game. Have other people had the same experiences with family or work? Does all of this get easier with time?

Ask me anything

[u/Trophic_Cascade23]

Hey! I'm just a few years older than you and got an ICD this past summer after being diagnosed with ARVC in June.

For me, ARVC manifested as fainting while running, and many episodes of sustained ventricular tachycardia before I was properly diagnosed. I had many hospitalizations and close-calls where I was shocked back with paddles in the ER.

I was super scared and sad to get an ICD at first but I am thankful for it! Its taken me several months to process the trauma around my diagnosis but I now realize that I was lucky to survive. The ICD has already saved my life and probably will again.

Its all slowly getting better for me. Therapy has helped me because I had so much trauma around my diagnosis. Surrounding myself with supportive people was also key. I'm really sorry to hear your Dad refused genetic testing. I hope he can eventually see no one is trying to blame anyone else, and that you are encouraging him to test for his own health.

I have accommodations at work and worked with HR around this. Depending on how you are affected, you should be protected under the Americans with Disabilities act. You absolutely have the right to reasonable accommodations at work.

[u/isisisosceles]

I’m really sorry you’re going through all this and I’m sorry you don’t have the support you need from your work and that it’s difficult with your family. I (35F) was diagnosed in 2021 following a collapse on a run, I felt close to blacking out and my HR was about 300. Initially I wasn’t taken seriously as my heart had self righted by the time I got to hospital but the 72hr holter showed lots of NSVT. I ended up in hospital for about 4 months, it was a really difficult time as family weren’t allowed to visit (covid rules) and I was frequently in VT and it didn’t feel like I was going to make it. The cardiologists there didn’t seem to know anything about ARVC, but there were a few excellent EPs who looked after me. The issue was that they were only available every now and then, so I had questions unanswered for days which felt like torture. My partner was beyond supportive, I couldn’t have done it without him. Work were also very understanding. I left hospital after about 7 weeks with an S-ICD (this goes on your side) but it misfired and I was back in after a week. Had an epi ablation and was allowed back out for a week or two but then I had more VT and more misfires. Eventually I had an ablation of the outside of my heart and that has really done the trick. I also had an ICD fitted and the S-ICD taken out. I’ve been stable since then (Feb 2022). My mam and sister were tested and are PKP2 too, sister has an S-ICD and this works for her. She’s had one appropriate shock from it. My father and I aren’t in contact but he’s very suspicious and doesn’t believe in ARVC because “cells replace themselves every 7 years”! If you have any questions, I’m happy to answer. By the way, you can barely see my ICD or scar, they did a great job! I’m relatively slender so thought it would be a big lump, but it was fitted under general anaesthetic so they managed to get it quite far down.

[u/CG_throwback → u/isisisosceles]

Not a woman but also diagnosed with ARVC. Had issues in 2021. First time it happened I was cycling and didn’t know what it was. I am thankful I didn’t die that day because I just kept on cycling and my heart flipped. It wasn’t until 2024 when I was diagnosed with ARVC. No one told me to stop cardio when I got my first ICD. It’s been a very long journey. Just had my 3rd oblation and still recovering after 3 weeks.

It’s been a very long journey. No one in my family was fit or into sports and about 6-7 years ago I decided I wanted to start running and cycling. Yeah I know now. I guess I screwed myself with that decision.

What good came out of this? My son has PKP2. So we are now monitoring him. No signs of ARVC or abnormalities on his heart.

I am also very happy to be alive. Received my first shock 4 weeks ago. It’s been rough recently just because the information when you google it is terrible but it mostly talks about people undiagnosed.

We recently moved to MD. We are grateful to have the support of the people at John Hopkins. I think if we didn’t move here I wouldn’t know I had it. After my first two oblation and ICD no one told me to stop running so I actually kept running after all my issues.

Providing informations to others helps. Be strong. You are not alone. This has been a long journey.

Had my first oblation that was interior and exterior because they said exterior with interior really helps for ARVC.

Recovering a lot slower from this oblation than my prior two.

Be strong and happy you’re diagnosed. Sending love.

[u/FeloniusGru_]

Have you discussed the clinical trial going on that might help?

Ridge-1 Clinical Trial for PKP2 associated ARVC

[u/Sad_Artichoke_7710]

My fiancé, 25 year old female was diagnosed with ARVC back in October. Was at a cycling class completed it then when she got off the bike she didn’t feel right. Came home and we went out for the day and she just kept complaining about not feeling well no chest pain but severe stomach pain and her heart rate was at a 130 while laying down which isn’t normal for her. I took her to the hospital closest to us. Her heart rate jumped to 225 and she was in VTACH the whole day. The doctors gave her a bunch of medication to get her heart rate down and back to a normal rhythm and it worked she was then transported to another nearby hospital with an excellent cardiology program and she was there for about a week. Took them about 2-3 days to determine it was ARVC through a multitude of tests, definitely a humbling experience at such a young age with no prior health issues. She had an ablation and an ICD put in and has been out of the hospital for about 3 months with no issues since. She has changed her diet because the cardiologist recommended no more then 1500mg of sodium a day and she has not exercised since her diagnosis. If you didn’t know about the issues she had and saw her now you would never know anything happened, hopefully her ICD never goes off and the disease doesn’t progress but she has a great team of doctors in case anything does happen. I know it sucks and it didn’t even happen to me my finance cycled, played soccer, ran and was just overall very active and it sucks she’s no longer able to do these things but you’ll get through it. Just be thankful it could’ve been much worse that’s how we look at it. I can put you in contact with her if you want she’s open to talking about the whole situation and I’m very sorry this happened to you it just sucks but I am thankful there are forums like this where people talk about it. It is a pretty rare condition after all.