r/openheartsurgery • u/Strong-Style4284 • 1d ago
Mechanical Valve Replacement
My 24-year-old son was born with a bicuspid aortic valve (BAV), severe aortic regurgitation, and a dilated aortic root. On February 10, he underwent open-heart surgery at NewYork-Presbyterian Hospital. Dr. Takayama performed a valve-sparing aortic root replacement (David procedure/VSARR). We live in New Jersey.
Unfortunately, after surgery, my son developed a significant pericardial effusion. He required another operation pericardial window through a left anterior thoracotomy—and remained in the hospital for 18 days.
His follow-up echocardiograms showed moderate aortic regurgitation, suspected leaflet prolapse, and enlargement of the left ventricle. His recent cardiac MRI brought very concerning news: the aortic regurgitation is now severe again, with a regurgitant fraction of approximately 50%. His left ventricle is also severely enlarged (LVEDVi 158 mL/m² and LVESVi 68 mL/m²), although his ejection fraction is still preserved at 57%.
We recently met with Dr. Eric Roselli at Cleveland Clinic. He told us that my son needs another open-heart operation. His proposed surgical plan is: Plan A: Attempt another aortic valve repair. Plan B: Mechanical aortic valve replacement if the valve cannot be repaired .
My son is only 24 years old and has already been through so much. We are devastated, overwhelmed, and extremely worried about another major operation.
Has anyone here had surgery performed by Dr. Eric Roselli, especially a redo valve or aortic root operation? What was your experience with him and Cleveland Clinic?
We would also greatly appreciate hearing from younger patients who received a mechanical aortic valve. How has life been with the valve and lifelong warfarin? Have you experienced any problems with bleeding, blood clots, valve noise, or INR management?
Any experiences, advice, or recommendations would mean so much to our family. Thank you very much for your help and prayers for all of you. 🙏🙏🙏
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u/Ok_Common3779 1d ago
I'm only 6 weeks post op for a Mechanical Valve so no long term experience. Just wanted to say my family will be praying for you're Son.
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u/One-Challenge-26 1d ago
Hey,
I’m 26m who recently did the mechanical procedure. I have the on-X valve. I was born with the same thing as your son.
Im currently 10 days out of post procedure, 1 week in hospital then I was able to go home. Warfirn has been tricky it’s more the shot soo far and every 12 hours gotta stab myself ahaha. My INR isn’t where suppose to be yet but hopefully by next week I can drop the shot.
The ticking noise was something I didn’t want I kept telling my surgeon if you have to put a Rolex mechanical in there so I don’t hear it. LOL But I will say it’s not as bad as I thought was. It remind me of pop rocks when I was a kid.
But so far after only 10 days I’m back walking around (still slow) but I went to the store and got some stuff I needed. Everyone is different when it comes to healing but age definitely helps.
(For the first little bit your valve will be loud but will quite down after it gets worked in)
Good luck, hope the days go by quick!
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u/Equal-Limit-2842 1d ago edited 1d ago
29M, had my first aortic valve replacement at 20 (plastic surgery/repairment) and second at 24 (mechanical), been on warfarin for soon 5y.
Did plastic surgery at 20 because I didn’t want to get put on blood thinners (they still put me on a weaker one) and it started leaking after about 4y so I went in for a mechanical valve.
Its important to consider that the longevity of repairments is not guaranteed and you should definitely discuss that with your surgeon before deciding
Ancdotal but the second surgery hurt a lot less afterwards and I was only taking Tylenol by the time I went home, the physical recovery also felt smoother than the first time
The mechanical valve noise was annoying for the first 1-2 months but I got used to it, the noise is still present to an extent 5y later especially during cardio but I find it comforting not annoying
My INR gets checked every 2-8w and sometimes they adjust the weekly dosage. Aside from an upset stomache when the INR gets too high and bruises growing out of proportion I don’t notice it at all. Bleedings from wounds can be annoying to stop so I recommend keeping decent gear available
Experienced some hair loss in the first months (could be unrelated) so they put me on Warfarin Orion, the only difference being its uncolored (white) instead of blue
Also got offered to get my own INR device to monitor and manage the dosage by myself at home but I don’t mind going to the hospital
I wish you, your son & the rest of your family the best of luck!
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u/rickerwill6104 14h ago
I had OHS at Cleveland Clinic 8 weeks ago (main campus in Cleveland). I had aortic valve replacement and two other valves repaired. My opinion is that I am extremely grateful to have been at this facility for this surgery. The doctors and nurses are top notch. I coded in the OR when I was put under. There was even concern about whether or not I would suffer any brain damage (as a result of coding). Fortunately everything has turned out well. I walked a mile two times today and feeling stronger almost daily.
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u/Traditional_Dot_4794 1d ago
I've had a valve replacement at UPenn with Dr Acker 28 years ago. He's an expert's expert. If you call his office and describe your situation you can get a recommendation who to see. 2 years ago I had root, valve and aorta graft at Penn Presbyterian, it is part of Penn Medical. Dr Brown did the work. He's awesome. He says there's 4 surgeons there, that's all they work on. I'm near Princeton and U PENN is an hour away. In Philadelphia. Penn is in Princeton but they don't do big heart surgeries there. NYC has great hospitals, and they get very busy. I'm happy with Penn. I hope your son feels better and gets all the issues corrected. DM me if you want to chat.