My good friend Barbara L. has suggested looking at Marfan syndrome information for ideas on how to cope with BAV disease. Marfan is a much rarer but better understood genetic disease that manifests itself with some of the same symptoms that we see in BAV disease. In particular, since Marfan is also a connective tissue disease disorder, people who have it often have aortic aneurysms, and eyesight problems. I don't have Marfan, even though I do have some of the classic traits like being tall, relatively thin face with arched palate and crowded teeth, and of course, the aorta problem.
One of the best resources I've come across is a web site put up by a woman named Janis Cortese. It has a ton of information about Marfan. You can get to it here.