New to the site and planning an AVR in Italy

[cuoricino]

Hi all, I've only discovered this site a couple of weeks ago, but it has already become both an obsession and a great help!!

A little about me:
I'm American, originally from California, 25 years old (26 in sept) and after years and years of regularly scheduled cardio visits and hearing them all say "you're in great shape.... surgery one day, blah blah blah", I got a slap in the face when my last visit this past May ended in a serious discussion about planning an AVR. I was diagnosed with a BAV when I was 5 and I have had literally no problems or restrictions in the least due to this condition until now. My ascening aorta has developed an aneurism over the years and it has reached 4.9cm and so they're saying to operate.

I wanted to especially make a shout out to all those youngin's like me who have to face this incredibly scary surgery with a million choices (bioprosthesis or mechanical? ross procedure, yes or no?) and even more doubts and "what if's." I know it's a long shot but if anyone has any experience with Italian surgeons I would be very grateful. I've been living and working here since 2006 and do not have any sort of American health insurance.

I'm leaning towards a bioprosthesis since I want to have kids and I'm currently researching the ross procedure as an option, but unfortunately not many hospitals perform it here. It also doesn't make much sense to me to operate on BOTH valves when only one is problematic. Any input would be great!

I hope to set my date at the end of the month which means surgery probably end of July! I'll keep y'all posted and will keep my eyes glued to the forum reading about all of your experiences!!

ciao

 

[RI Mom]

No personal experience with Italian surgeons, however, at one time my family was considering an assignment in Italy and my son's cardiologist suggested a hospital in Rome. I think it was Bambino's (I guess that is a baby's or children's hospital). Pediatric surgeons do operate on adults with congenital heart defects. It may be worth a call to find out what they typically do for kids and if they work on adults with CHD. I know that the Ross is done frequently in the pediatric population.

Best wishes!!

 

[kfay]

Hi, just want to welcome you to this site. How lucky are you to live in that beautiful part of the world! Unfortunately, I don't know of any surgeons in Italy and I can't recall seeing anyone from Italy on here, although there are others who would have a better idea on that who hopefully be along soon.

Sorry you have to have surgery, but it sounds like it is time. It's good that you are thinking and planning ahead if you want to have children. Of course, you know, that tissue valves aren't ideal in someone your age because you will have to have surgery again, but hopefully this one will last until you have your children so you will only have to have one repeat.

Ask away any questions you may have. We have seen and heard everything. Good luck to you.

Kim

 

[WayneGM]

Welcome to VR.com. Sorry for the circumstances but glad you found us.

 

[Bina]

Welcome to the zoo. Browse around the valve selection Forums, there is lots of great info.

 

[briansmom]

Hi. I'm glad you found us, though I'm sorry it was necessary. My son had his surgeries at 16 years old. We debated on a Ross but felt the same as you - why risk screwing up a 2nd valve. My son really wanted to continue as a competitive off-road racer so we were worried about the coumadin. Unfortunately, my son had too much heart damage to continue racing and his doctors were pretty adamant about a mechanical valve. We chose the On-X valve in the hopes that some day he won't need as much anti-coagulation. The coumadin is not that difficult to manage. On the other hand, if you are female and want to have kids I think that being on coumadin is doable but really difficult. Most women who want to have kids go with a tissue valve.

Unfortunately, I don't know much about the medical system over there; I just know how beautiful the country is. Milan is not too far from Florence and it seems like a very modern city.

 

[hall]

Welcome. Sorry, I don't know of surgeons in Italy. Please keep us posted.

 

[cuoricino]

Thanks for the hearty welcome! I'm sure you'll be hearing from me in the weeks to come

ciao

 

[MissMelis]

Hi and welcome,

I had a Ross procedure in 2005 at the age of 26. I too had the same thoughts as you about "why make a one-valve problem into a two-valve problem", but then on the other hand, the aortic valve position is such a high-volume one, it's nice to have one's own tissue there. That, and the fact that my surgeon said that until they get in there and measure exactly down to the nanometer, they wouldn't do it unless it was a perfect fit.

Since then, however, I have developed an aneurysm as well, in my aortic root, which I'm told is a direct result of having had the Ross procedure. Now, apparently, they implant a graft when they do the Ross to avoid this complication.

Definitely some big choices coming your way. I opted for tissue valve over mechanical due to my age, and the fact that I'd like to have children yet too, and was informed that mechanical valves, blood thinners and pregnancy do not mix - which, I'm sure you've realized by now

Hope this helps - feel free to PM me if you'd like more info.


Florence was my favorite city in Italy

Take care - and don't be afraid to ask questions!

Melissa