Severe bicuspid AS + 46mm ascending aorta at 53 — looking for input on the operation, recovery, and returning to hard training
Hello. I'm 53, and I'm hoping to hear from anyone who's been through something similar.
I was diagnosed a while back with:
- Severe aortic stenosis
- Heavy calcification of the aortic valve
- Bicuspid aortic valve
- Dilated ascending aorta, 46mm
I've been in a bit of a daze since. I thought I'd done everything right. Ate well, trained consistently, hardly ever sick, never needed medication, rarely saw a doctor. I was cautious enough that I didn't even take the Covid vaccine. And I still ended up here. I've been extremely angry about it.
One thing I've noticed: the more I think about it, the worse I feel. The more I carry on the way I did before I knew, the better I feel. I haven't trained in a while, but I feel like I could pick up right where I left off. Then I read more about what these numbers actually mean and start thinking I could drop at any moment. It swings between those two.
Yesterday I had my coronary angiography. My arteries came back clean. The cardiologist put it as "you're in perfect condition, apart from what you were born with." There are moments now where I think I may as well eat and drink whatever I want.
That's the mental side. Here's what I'm actually hoping to learn from people who've been through it:
Recovery and training. How was recovery for you? Did you get back to training hard, or is that off the table for good? I'm not asking about walking round the block, I mean real loaded work.
Options I may not have found. I don't want my chest cut open, though I'm aware that what insurance covers and what I can afford may be two different things. I'm in Greece. My understanding is there are approaches through the groin or between the ribs. For anyone who had one of those, how did it go, and were you actually offered it as an option or ruled out?
The Ross procedure. I found this one and it sounds like the option most likely to get me back to where I was. It also sounds like the most complex and the highest risk. Has anyone here had one? How did you find a surgeon, and how did you satisfy yourself they'd done enough of them?
Mechanical valve. I'd rather not be on warfarin for life. I've read that cayenne pepper has blood-thinning properties, and I already take it daily. I understand it's not the same mechanism, but is there anyone here managing a mechanical valve on anything other than warfarin, or any combination approach your cardiologist has been open to? And for those on warfarin: how much does it really change day-to-day life and training?
Tissue valve. I've read they last roughly 10 to 15 years. Does that mean you're simply doing the whole thing again in your 60s, or is it more complicated than that?
Thanks in advance for anything anyone can share. Information, options, or just how it went for you. Any of it helps.
PS. Reddit disclaimer: I'm well aware most people here aren't medical professionals, and I won't be taking anything said here as fact. I'm just inviting people to share what they went through.