u/No_Exam4352

hi everyone! So grateful to have found this community. I’m currently about to have a second OHS. It came out of left field so it’s brining up a lot of ptsd. I was born with aortic stenosis and had my first OHS at CHOP in 2017 (age 21) with Dr. Fuller - loved her! now 9 years later we found my gradients on my mechanical valve are higher than they should be. My cardiologist is suspecting pannus and has said this is such a rare complication. I was 21 when I got the on-x implanted and thought that would be my first and only OHS.
now I’m doing this all over again. Anxiety is at an all time high and I haven’t been able to sleep or relax for almost 2 months now. My PCP just prescribed me buspar.
That being said, Dr. Fuller is now chief at Hopkins. We have stayed in touch for many years and I asked her to do this redo procedure. While Penn is home (I also live in Philly), I think I am more comfortable having Dr. Fuller do this surgery again so my family and I will travel to Hopkins for this. Have any of you followed your original surgeon to another hospital? The plan is to have this done in October or November, and do all follow-ups at Penn.
Any tips from folks who have had multiple surgeries? For some reason I’m even more scared this time. Since 2017, I’ve graduated, started working, gotten my master’s, bought a house, got married. It feels like there is so much more at stake now.

Hi everyone,
Super grateful for this group. It’s been hard to talk to my friends and family about this, it’s like they don’t understand. I was born with aortic stenosis and have had lifelong follow up at an ACHD center in the northeast.

In 2017 when I was 21, I got an on-x aortic valve. At my most recent echo a few months ago, we found my gradients are back to hovering around moderate-severe stenosis. I had a cath last week and they found pannus growing on the valve. I chose this valve with the intention of never having it replaced.
I also just got married a few months ago so my husband has been thrown into the world of CHD pretty rapidly. All this came out of left field.
My surgeon is now at Hopkins and we’re leaning towards traveling there to have her do it. They want to put in a larger size on-x valve and do a root enlargement, which she thinks should prevent this from happening again.

Has anyone ever had a mechanical valve replaced with another mechanical valve? It’s frustrating because there’s nothing wrong with the valve itself, it’s the pannus. I’m also just terrified of having to do this again and knowing it will be a more involved surgery is scaring me. Any words of wisdom would be helpful!