Mauricio Trindade - Heart Valve Journal

My Journal

44 days ago

Sue Connell , Daisy Tanner reacted to this

My time has finally come. It's a really weird feeling because I was diagnosed at birth and always knew this day would come, but thought would be on my 50's ...Read more

My time has finally come. It's a really weird feeling because I was diagnosed at birth and always knew this day would come, but thought would be on my 50's or 60's. I'm 39 and was recently told my dilation is enough to go for surgery, probably within the next 6 months if not earlier. I'm quite calm so far despite some initial emotions. I'm having a conversation with my doctor tomorrow and I'm hoping to be eligible to the Ross procedure as I don't want blood thinners. Second option to me is animal tissue + hoping I can just do TAVR after that. I'm still processing it... my life still feel pretty normal and I don't feel any symptoms (or at least none that I know of), and that life is about to change at least for a good bit and with a bit of uncertainty about when it comes back to normal and hoping there are no complications.I wonder if anyone here has done the Ross procedure in Sydney/Australia? The most known doctor (Skillington) from Melbourne have retired. I know a couple do in Sydney but it's not to reassuring that I can't find enough information about them. There's still a good option in Melbourne but that incurs travel.
The thing that also plays a role is the fact that I live alone and my family is not in the country. And I don't have the Ross option in my home country. Some of my family will travel to take care of me but not sure how long they should be expected to stay.Anyway just a bit of a brain dump. Thanks for reading

Paola Velez Good luck!! Sending prayers and a successful recovery!

Marie Myers I am sorry you have to go through this at a young age. The travel can make it more difficult as well ... Read more

Marie Myers I am sorry you have to go through this at a young age. The travel can make it more difficult as well, so I hope you are able to arrange the best option for you. As for family coming to help, i feel the best time for them to come and help will be the first two weeks after surgery. That is when I felt I needed help due to my exhaustion and limitations due to my surgery. Please keep us posted!

Jeff Williams Hope all goes well. I was also 39 when I had my valve replacement. I went with an On-X valve and am ... Read more

Jeff Williams Hope all goes well. I was also 39 when I had my valve replacement. I went with an On-X valve and am quite happy with it. I'm happy to answer any specific questions if you have them.

J Alexander Lassally Hi - Indeed you're better off not having a Ross if the most skilled or highest regarded in Australia ... Read more

J Alexander Lassally Hi - Indeed you're better off not having a Ross if the most skilled or highest regarded in Australia have retired. That is a recipe for failure, and you don't want to be a guinea pig for newbies.
You could run multiple streams in parallel and proposition a US surgeon about Ross?

Fidel Martínez Ruiz Mauricio, look this problem on the positive side, it´s better to know early one problem, even big, b ... Read more

Fidel Martínez Ruiz Mauricio, look this problem on the positive side, it´s better to know early one problem, even big, because you have the opportunity to address it before. I see you play guitar as myself, I send you a very bad version of Beatles (from when I was young). Best wishes for you.

Damn it, I´ve just tried, but I have not be able to post. Anyway it was a bad version of "With a little help from my friends". Consider feeling sent.

Fidel Martínez Ruiz I agree with Alexander oppinion, Ross procedure requires a lot of skill from surgeon if you don´t wa ... Read more

Fidel Martínez Ruiz I agree with Alexander oppinion, Ross procedure requires a lot of skill from surgeon if you don´t want to fail.

Simon Mezz Mauricio, I’m in Adelaide and also looked into the Ross procedure. Unfortunately Mr Skillington is ... Read more

Simon Mezz Mauricio, I’m in Adelaide and also looked into the Ross procedure. Unfortunately Mr Skillington is the best guy but now retired. I explored this option anyway but found that it wasn’t a good option for me given my aortic root dilation. So a mechanical valve seems to be my option. The Ross is done is less than 1% of all aortic ops. There’s no many expert surgeons who do that unfortunately,,l

I think it’s important to understand each option and if like me, and your desired option doesn’t work out then focus on the next best thing as whatever you choose you do really want to be in experienced hands, good luck with it, I’ll be interested to hear how it goes for you.