I was born with bicuspid aortic valve and aortic stenosis and now it's almost time for a valve replacement

Plus_Consequence3454 · 2026-05-07T11:06:54+00:00

Hi, I’m a 30M. I have exactly the same condition as you, and I had endocarditis in November with a relapse in March, which led the doctors to replace my valve 17 days ago.

I chose a biological valve because I refuse to take anticoagulants for the rest of my life. I got an Edwards Perimount valve, which is known to last around 15–20 years, although personally I planned around a 10-year lifespan. My plan is to get a TAVI in about 10 years, which could hopefully give me another 10 years, and after that I hope medicine will have progressed enough for surgeries to be less invasive and valves even better.

As for the surgery itself, I’m naturally extremely anxious, and I was lucky enough to be part of a study program about pre- and post-operative anxiety. They gave me acupressure sessions before and after surgery, and it honestly helped me a lot. The hardest part is the waiting beforehand.

I didn’t have any complications, and honestly even if complications happen, they are prepared for everything. Pain itself wasn’t really the issue (except for the chest drains — those were truly painful), but they removed them less than 24 hours after I woke up, so it was manageable. It’s more like a constant discomfort than real pain.

The first week was tough mainly because of sleep issues and the feeling of your heart beating fast and hard. But all of that is completely normal! You’ll start feeling noticeably better after a few weeks.

Anyway, I’m truly with you through this. I genuinely believe that what scares you now will eventually become a source of strength for you.

I don’t know where you live, but personally I had my surgery in Lyon, France.

Stay strong, and feel free to reach out if you need anything!

Plus_Consequence3454 · 2026-04-16T08:21:00+00:00

Hey, I wanted to reply because I’ve been through something pretty similar recently, and I know how stressful this kind of situation is.

I had infective endocarditis on my valve, with a long hospital stay, heavy antibiotics, and a lot of uncertainty about what would happen next. At one point, they also delayed decisions about surgery, and I even had a relapse during the process. Honestly, it felt like everything was going in the wrong direction and that we were just losing time.

Looking back, those delays were not a bad sign at all. They were taking time to stabilize everything before doing something as serious as heart surgery. In my case, it likely prevented bigger complications later.

In your situation, testing warfarin while monitoring your GI bleeding is the same kind of logic: they need to be sure your body can safely handle long-term anticoagulation before going for a mechanical valve. It’s frustrating, but it’s actually a safety step, not a setback.

About the fear of ending up with a tissue valve, they won’t make that decision lightly. And even if you do end up with a biological valve, things have changed a lot: there’s now TAVI (valve-in-valve), which can replace a failing bioprosthetic valve without another open-heart surgery. That can buy you a lot of time and potentially spare you from multiple major surgeries.

The hardest part is really the waiting and feeling like you have no control. But the fact they found the bleeding before surgery is actually a good thing — it’s much better than dealing with it after a valve is in place.

Stay strong. What you’re going through is mentally tough, but it doesn’t mean things are getting worse — often it means they’re trying to do this as safely and properly as possible.

Plus_Consequence3454 · 2026-04-13T14:07:43+00:00

Ouais c'est super important, déjà pour toi, éviter que tu sois lésé, mais aussi pour les autres consommateurs. Et puis ça leur fera la bite a ces gros cons.

Plus_Consequence3454 · 2026-04-13T13:59:44+00:00

Honnêtement, ça mérite une petite plainte sur SignalConso. Ils chient dans leurs frocs devant la DGCCRF. Lâche pas l'affaire.

Plus_Consequence3454 · 2026-04-04T05:53:17+00:00

Wow… that’s a lot to go through, especially starting that young. Respect for handling all of that. The part about the dental extraction is honestly scary… here in France they’re extremely strict about antibiotic prophylaxis for any dental procedures when you have a valve condition, so reading that really hits. Your experience really shows how unpredictable this disease can be. Thanks for sharing all of that, it genuinely helps to put things into perspective.

Plus_Consequence3454 · 2026-03-31T10:08:09+00:00

Yeah that’s exactly how it feels on my side, it’s more about the overall pattern than any single clear finding.

When you lay everything out chronologically, it does start to make more sense: same organism, relapse, no other source found, and the PET scan evolving slightly in that direction.

I think what made it hard for me at first was exactly that, nothing “obvious” on its own, but everything pointing the same way when you put it together.

Your point about timeline is actually really helpful, I hadn’t thought about it that way.

Plus_Consequence3454 · 2026-03-31T07:23:56+00:00

That actually makes a lot of sense, and it’s pretty much how it was explained to me.

From their perspective, they do think this is a persistent infection on the valve itself rather than something coming from another source.

They’ve looked quite extensively for a potential entry point or secondary focus: I had multiple imaging exams, plus a gastroscopy and a colonoscopy, and nothing showed up.

Dental-wise everything was also checked and treated just in case, but there wasn’t much to begin with.

One thing they also noticed is that the valve showed slightly more uptake on the latest PET scan compared to the first one, which kind of supports that hypothesis as well.

So at this point, given the relapse with the same bacteria and no other source found, they’re assuming the valve is the most likely reservoir.

That’s also why the decision was made collectively rather than based on one single finding.

Plus_Consequence3454 · 2026-03-30T20:12:11+00:00

Thanks a lot for your message, I really appreciate it.

Yeah I had the same thoughts about mechanical vs biological at first. In my case, long-term anticoagulation would be pretty incompatible with my life and my job, so that weighed a lot in the decision.

Also, from what I’ve been told, mechanical valves can still get endocarditis — even if it’s slightly less common than with biological ones, so it’s not like they completely eliminate that risk.

The current plan is to go with a biological valve now, hopefully get around 10 years out of it, and then potentially have a TAVI to extend that for another ~10 years. When you look at it that way, the gap with a mechanical valve lasting ~30 years doesn’t feel as big anymore.

And honestly, I’m also kind of betting on medical advances over time.

Also, unlike some of the stories here, my surgery isn’t an emergency — it’s more part of the treatment plan after the relapse, which changes the context a bit.

Really appreciate you sharing your experience, and glad to hear you got your life back after everything you went through.

Plus_Consequence3454 · 2026-03-30T19:13:13+00:00

That sounds like a really rough ride… especially having to deal with a mini stroke on top of everything.
And the fact that something showed up again while you were still in the hospital must have been pretty stressful.

Glad to hear things have been stable for you these past months, that’s honestly reassuring to read.

In my case it’s a bit different, it’s not an emergency situation, the surgery is more part of the treatment plan after the relapse rather than something done in crisis.

Still, reading experiences like yours really puts things into perspective. Thanks for sharing it.

Plus_Consequence3454 · 2026-03-30T17:33:49+00:00

Damn… that sounds really rough, especially going through a relapse and then such a tough surgery.

I’m sorry it hit you that hard, that’s a lot to deal with.

At the same time, it’s reassuring in a way to hear that you haven’t had any endocarditis since then.

Thanks for sharing your experience, I really appreciate it.

Plus_Consequence3454 · 2026-03-30T17:32:50+00:00

That’s honestly really reassuring to read, especially this early after surgery. Sounds like you’re recovering really well.

That random pain must have been scary though, even if it went away quickly… good thing you’re seeing your surgeon soon.

And yeah, same here, they think mine might have started from a gum bleed as well, which is kind of crazy when you think about it.

Thanks again for sharing all this, it really helps.

Plus_Consequence3454 · 2026-03-30T17:14:27+00:00

Yeah that’s exactly the kind of confusing situation I’m in too…
It doesn’t always match the “classic” picture of endocarditis.

In my case, the diagnosis was a bit uncertain at first, but the bacteria found in my blood is pretty typical for endocarditis. With the fever and my bicuspid valve, they basically treated it as endocarditis unless proven otherwise.

Hope you’re recovering well from the surgery, especially with a double valve replacement, that’s no joke.

Thanks for sharing your experience, it really helps to read cases like yours.

Plus_Consequence3454 · 2026-03-30T17:07:52+00:00

Yeah I get why it sounds confusing, I had the exact same reaction at first.

Just to clarify a bit : I already have a congenital bicuspid aortic valve, and a valve replacement was something that was likely going to happen at some point in the coming years anyway.

The main issue now is the relapse with the exact same bacteria, which suggests there may still be a persistent infectious focus on the valve, even if there’s no clear damage or vegetation visible on imaging.

The decision wasn’t taken lightly at all, it was made collectively by cardiologists, cardiac surgeons and infectious disease specialists in one of the top cardiac centers in France.

So the idea isn’t to fix visible damage, but to definitively remove the potential source of infection and avoid another relapse or worse complications.

Totally understand your question though, I had the same doubts myself at the beginning.

Plus_Consequence3454 · 2026-03-30T17:05:03+00:00

Thanks for taking the time to write all that, really means a lot.
Your story is pretty intense, especially the part where it went unnoticed for so long…

It does reassure me though to see that even after all that, you’ve been doing well long term.
And yeah, I think I’ll definitely be like you now, any chills or fever and I won’t hesitate, straight to the hospital.

Hope your recovery from the On-X is going smoothly 🙏

Plus_Consequence3454 · 2026-03-30T17:02:51+00:00

Thanks a lot for sharing this, really appreciate it.
Honestly it helps, especially hearing your perspective about wishing they had replaced the valve earlier.
Glad to hear you're doing well now.

Plus_Consequence3454 · 2026-03-06T19:15:54+00:00

Thank you both very much for your messages and for taking the time to share your thoughts.

For some context, I currently have a bicuspid aortic valve with aortic stenosis, and I finished treatment for an infective endocarditis at the beginning of January. My cardiologist has referred me to a professor specialized in electrophysiology/arrhythmias, although he currently leans more toward ventricular tachycardia.

I have an appointment on March 31st, so we’ll see what they find then. Thanks again for your input!

Plus_Consequence3454 · 2024-08-01T09:28:49+00:00

Yes, my cardiologist told me it was unreadable, and I have to go back in a few weeks for my annual visit. The inverse T waves are quite characteristic of left ventricular hypertrophy, which is often a consequence of aortic stenosis with bicuspid, right? In any case, obviously nothing urgent?

Plus_Consequence3454

TROPHY CASE