Msins

[msins]

Has anyone had open heart surgery for an aortic valve replacement with lupus anticoagulant

[Wittycjt]

I’ve had surgery for a mitral valve repair. How can I help? Yes I have APS

[msins in reply to Wittycjt]

Was it open heart or the TVAR procedure. Were you concern about throwing a blood clot, not being on Coumadin.

[msins]

It's when they go thru your groin and not cut you open.

[Wittycjt in reply to msins]

They cut through my chest. Yes I was worried, but they heparinize you during surgery. It was after I had the problem when they didn’t anticoagulate me properly. Where are you having it done? What hospital? Are you in the states? You don’t have much written in your introductory/profile page.

[msins in reply to Wittycjt]

I would have it done at Yale. I am in Ct. I'm worried about forming a clot and having another stroke (had one in 1992 when my condition was discovered) or worse dying from throwing the clot.

[Wittycjt in reply to msins]

What meds are you on? I have private messaged you. A number will go up next to “chat” above, click on that to get message🤓

[MaryF Administrator]

Hi, many on here have had surgery, it is crucial that your medication is managed while you build up to, and have the operation. Are you on Warfarin, is so you need to see your hospital's bridging protocol for medication. Your main Hughes Syndrome/APS specialist needs to be involved with input before your operation. MaryF

[msins]

Thank you for this imput.

[Kerlampert]

Aloha from Hawaii.

Yes, I had a mechanical aortic valve replacement in 2014 (due to a congenital murmur).

Also have had Lupus/APS....for about 30 years.

It was my choice to go with the mechanical valve, because it lasts longer, and I already was on lifelong warfarin therapy...

Kerstin

[Wittycjt in reply to Kerlampert]

Did you have the TVAR procedure?

[Wittycjt in reply to Wittycjt]

This was a reply to Kerstin

[msins]

No. I was told I’m not eligible cause I’m not high risk by FDA standards. Open heart is being recommended