New diagnosis BAV...... Surgery week after next

[jade100]

Hi all,
We've (girlfriend & I) been reading this forum for a while now & it's great to know there are others out there! Mid may I came down with a rash & high temp which turned out to be strep in my blood which caused endocarditis. After being sent for an echo they tell me I have a bicuspid aortic valve with dilation of the ascending aorta and enlarged left ventricle. Im a fit healthy 5ft 11 *gym goer who has never had any symptoms. After 2 weeks in hospital & a further 4 weeks at home on IV antibiotics I went back to see the cardio thoracic surgeon. *We were under the impression it was just the valve that was being replaced but he said the ascending aorta needs replacing too and possibly might have to use the Bentalls procedure which I think means replacing the aortic root too? But I'm not sure? Does anyone else know more about this? My ascending aorta is 44mm & they don't like it to be 45mm or above so he feels if they just have to go in & fix this all up at once hopefully I'll not have to have OHS again. On some American forums they don't think about operating until its 50mm!

The other thing I didn't mention is that we are in Australia! We are on a round the world trip and in march we just got back from Africa and South America. We planned to be in Australia for a year or so then this happens! We are British & live in Scotland normally. Never felt so far from home! The health care here is excellent & Australia has a reciprocal agreement with the UK so as long as I have my Australian Medicare card everything is free.
The waiting for surgery is the worst, I have my pre-op CT tomorrow then looking at surgery the week after next.*

 

[Bill B]

Yeah, the Bentall is the whole thing - root, valve, ascending aorta. Even if your aneurysm is "borderline", it sounds like your valve probably needs replacing (based on enlarged LV probably indicating the BAV is stenotic and/or regurgitating), so it's a "while you are in there" type of procedure. Mine was that way, and the surgeon also replaced part of the aortic arch as well as it was involved with poor quality connective tissue seen with BAV.

From one perspective, it's good to get this over with so soon after diagnosis as you don't have a lot of time to stew unnecessarily over the prospect of surgery. As you have probably read, most everybody spends a fair amount of time pre-op freaking out. Despite the fact that this surgery is rather routine and overwhelmingly safe and successful, it's a scary event because it is so unknown (I was never hospitalized before it). Pre-op CT - that's cool. My surgeon used that instead of a cath and I appreciated that. With the new CT machines it only takes 10 seconds, and with contrast agents, the amount of detail that can be seen is ridiculous. I was tested when the General Electric people were there doing some post-installation training, and they showed me all the pretty pictures. Remarkable.

Anyway, good luck with the surgery. You will do well, although, of course, recovery is a real process and you'll feel initially like you got run over by a truck.

 

[jade100]

Thanks for your reply Bill. It's really good to hear from people who know exactly what all this is like. Really helps to put our minds at rest! Well, as much as is possible at the moment. I'll keep you all posted with my story.........
Cheers,

 

[Duffey]

I can't add anything to Bill's reply, but as you said, Australia has an excellent medical system, and most Australian VR members report outstanding
surgical outcomes.
We'll be watching for future updates, and good thoughts coming your way.

 

[Bina]

Hello and welcome !
There are many of us here with BAV and quite a few with replaced aortas as well. Lucky for you that you ended up with a
diagnosis in Australia You will do great.

 

[Rachel]

Welcome!

Waiting is the hardest part! Sounds like you're in good hands though in Australia. Like you and Bill B, my doctors also used a pre-op CT and I skipped the cath!

You're going to do just fine, thinking of you!

Rachel

 

[jade100]

Hi all,

Just an update. Had my pre op clinic last Monday and bumped into my surgeon there. He says my pre op CTCA was good & my coronary arteries look good but the aortic root was 49mm? Maybe, does this sound right?
He said they would be going ahead with the Bentalls procedure as long as both sinuses on the root were affected (I'm assuming there are 2 sinuses on the aortic root)*
Don't remember if I mentioned this before, but he also said that my mitral valve has a minor leak too which they won't be doing anything about & is unlikely to cause problems but this made him think I my situation was genetic (in my genes) rather than congenital (born with). Has anyone else been told this or knows what this means? My family are all getting tested & I assume when we have kids they'll have to be tested?

Anyway, on Tuesday I got a phone call to say could I come in for my op the next day. So It was a bit of a shock but we got our head round it through the course of the day, phoning family & friends ect... Then 4 hours later my surgeon rings me & cancels the op. my ICU bed had been taken so he couldn't go ahead with it but has rescheduled for this Wednesday, so we're on a countdown again. I'm sure I don't need to tell most of you about the disappointment of being cancelled, but it has not been a good week!

 

[TheGymGuy]

Stay strong. The surgery will be done and over with in no time. To you it will see as a 5 second nap, and then you will work through recovery, and be back to your old-self in no time. Of course, time is a relative term, but even if it takes 2 years, a renewed lease on life is soooo worth it