Bicuspid Aortic Foundation

[Arlyss]

There is a new resource for those with bicuspid aortic valve disease, as well as any form of aortic disease in the chest. I hope the information there will help all those who need it!

http://www.bicuspidfoundation.com

Best Wishes,
Arlyss

 

[Raverlaw]

Arlyss-

Thanks for the link.

 

[happyheart]

Bicuspid Aortic Foundation

Very interesting link. Just checked it out in a cursory way and I'll go back and read it more thoroughly.

Some of the information is quite alarming. My life with a bicuspid valve has been perfectly fine. Now 55, soon 56, my two-flap valve hasn't slowed me down, until recently. Soon, I'll have it replaced.

I wonder if the entertainer John Ritter--who died suddenly of a aortic dissection--had a bicuspid valve?

 

[Arlyss]

Hi Happyheart,
I hope you will find the information on the website helpful. I have met a lot of bicuspids and they are typically very healthy and athletic....

My husband lived a normal, active life until his valve was replaced. Then for 11 years, we thought everything was fine until his aneurysm was fortunately discovered! I know someone else very much like him, except it was 9 years after the valve was replaced when the aneurysm was discovered.....and his aneurysm was even larger than my husbands! Both of them, and others like them, are fortunate that they did not dissect! As the web site mentions, there is a lot of variation in this condition, so it is important to know what is going on in each individual.

I would encourage you and anyone who is bicuspid to have a complete aortic evaluation. Here is another link that may be helpful, to the aortic program at Cedars-Sinai in LA.
http://www.cedars-sinai.edu/aorta

Best Wishes,
Arlyss

 

[Marguerite53]

lots of info

lots of info

Arlyss,

I can't thank you enough for those 2 websites! I learned more in 10 minutes than I ever did from either of 2 cardiologists! The second site in particular.

There will always be gaps in people's understanding of everything. Different entities address things in different ways. So many gaps to fill in that we don't always even know are there. Can't say that it was very uplifting but certainly very useful.

Thanks!

Marguerite