Davidr
Well-known member
Hi all,
In Jan 2000, I had the ultimate "millennium bug" and was admitted to hospital. :rolleyes2:
It was a Staphylococcus Aureus infection on my bicuspid aortic valve (isn't it amazing how we remember complicated medical terms that change our lives!!!). it ended up damaging my BAV to the extent it had to be replaced. This was done in October 2000 with a St Jude's.
It was the first I, or any of my family had heard of a bicuspid aortic valve.
I was simply told that it was not dangerous, and nothing to be concerned about. My card even said that most people with a BAV live their entire lives with the BAV without even knowing it exists.
Now, 10 years later, i find this site (because of something totally different - my warfarin dosage and issues about that), only to read a few things about BAV and CTD.
Correct me if i am wrong, but:
1. BAV and CTD are strongly related to each other, so much so that if you have one, there is a fair chance (40%) that you have the other?
2. BAV is very likely genetic, so if one person in a family has BAV, the others might have BAV or even CTD without BAV?
3. Not all surgeons or cardios are well studied on BAV/CTD, and might even miss CTD in early stages when doing the AVR?
4. CTD is degenerative, in that it becomes more pronounced and potentially more likely flare up as we age.
If this is the case, i need to ask...
1. What should I say to my new Cardio? Should I ask for an MRI/whatever to rule out CTD?
2. Should I tell by siblings to go and get tested too? Especially as I see people talking about the aneurisms inherent in CTD being walking time bombs?
3. I have no kids, but both of my siblings have kids, should they be tested too?
Oh, and i was 26 when i had my surgery, so i suspect that if a doctor wasn't looking for thighs, they may have missed it...
Your input would be appreciated!
David
In Jan 2000, I had the ultimate "millennium bug" and was admitted to hospital. :rolleyes2:
It was a Staphylococcus Aureus infection on my bicuspid aortic valve (isn't it amazing how we remember complicated medical terms that change our lives!!!). it ended up damaging my BAV to the extent it had to be replaced. This was done in October 2000 with a St Jude's.
It was the first I, or any of my family had heard of a bicuspid aortic valve.
I was simply told that it was not dangerous, and nothing to be concerned about. My card even said that most people with a BAV live their entire lives with the BAV without even knowing it exists.
Now, 10 years later, i find this site (because of something totally different - my warfarin dosage and issues about that), only to read a few things about BAV and CTD.
Correct me if i am wrong, but:
1. BAV and CTD are strongly related to each other, so much so that if you have one, there is a fair chance (40%) that you have the other?
2. BAV is very likely genetic, so if one person in a family has BAV, the others might have BAV or even CTD without BAV?
3. Not all surgeons or cardios are well studied on BAV/CTD, and might even miss CTD in early stages when doing the AVR?
4. CTD is degenerative, in that it becomes more pronounced and potentially more likely flare up as we age.
If this is the case, i need to ask...
1. What should I say to my new Cardio? Should I ask for an MRI/whatever to rule out CTD?
2. Should I tell by siblings to go and get tested too? Especially as I see people talking about the aneurisms inherent in CTD being walking time bombs?
3. I have no kids, but both of my siblings have kids, should they be tested too?
Oh, and i was 26 when i had my surgery, so i suspect that if a doctor wasn't looking for thighs, they may have missed it...
Your input would be appreciated!
David
Same deal when I mentionned PVCs and PACs.