I am very concerned that others could find themselves in this same situation - it is important that the medical profession be very direct and clear that having one surgery does not mean "fixed for life" when it comes to BAV. Compounding things for those with BAV is that they often are high-energy individuals who feel well and have no indication that an aneurysm is developing. It is so easy to believe that there really has been a permanent, or at least very long lasting, solution.
No one can predict how long it may be before further intervention is needed - and in this person's case, the timing could not be worse. An aneurysm has been discovered and needs attention with the worst possible timing - a "pre-existing condition" clause in an insurance policy, assuming someone can get the insurance, could be a death sentence for someone with an aneurysm if it prevents them from getting the care they need.
My perspective comes from years of experience with my husband - we were told by a local doc following that first valve surgery in 1990 that he was "fixed" - implying no more problems from BAVD! For a number of years that only appeared to be the case - in reality, his ascending aorta was slowly stretching into an aneurysm. We are fortunate to have always had the insurance coverage needed.
Ross has described the problem this family and others like them face above - and from what I understand, they have explored numerous options looking for help. Especially for those who might be located nearer to them, it should not be difficult to check out the legitamacy of this family's need.
I hope that those reading this who have BAVD may learn something important without having to go there themselves - BAVD can be unpredictable, and those who have it need financial flexibility to seek help where ever they might need to go to find it. They need insurance, yes, - very flexible insurance, that will not deny tests, consults, or treatment from the physicians pioneering the treatment of this condition.
Best wishes,
Arlyss
