|Dr. Sharo Raissi, Scientific Advisory Board Chairman, Arlys Velebir, BAF President,|
Dr. Jason Sperling, Scientific Advisory Board Member
Who can help us?
Who do we turn to when a bicuspid aortic valve appears on the scene? Who can help us? It is a question that my family first confronted over 20 years ago.
At that time, my husband was treated in our local medical community, where we first heard the words "bicuspid aortic valve". Other than being told this is a birth defect, nothing in particular was said. My husband received the typical treatment for younger people at that time, replacement with a mechanical valve. We were told he was "fixed" - just take his coumadin (warfarin) faithfully, watch out for infections, and he was set for the rest of his life.
My sister told me about friends of hers back then. The man's aortic valve had been damaged by rheumatic fever. He had it replaced with a mechanical valve and was doing very well. I remember how it comforted me and gave me hope that my husband could be helped too.
I asked her about this man recently. He still has the same mechanical valve, still takes his anticoagulant, and is doing well.
That was supposed to happen to my husband too. But it didn't.
You see, bicuspid aortic valves are "special" and those who have them need special care. As someone from Australia wrote, BAV families have "dodgy" tissue. The definition of dodgy is very appropriate - "unsound, unstable, unreliable" and "so risky as to require very deft handling".
Later, when my husband's aneurysm was discovered, we began to understand we were dealing with something "dodgy", and it was going to take some very special help to get through this. Later still, there were more complications.
Great Hearts, Skilled Hands
And so, that is the background, the reason for my smile in the recent picture above, standing between two surgeons who have tremendous hearts and skilled hands, hearts and hands that care for those with BAV.
I know, so many years later, that is what it takes. Hearts big enough to spend so much time, to give of themselves tirelessly. Spending an hour with you for your first consultation, reading your CT, MRI, and echo themselves, helping you with blood pressure, answering your questions, and grappling with everything that makes you special. And some day, performing surgery on that dodgy tissue. How dodgy? Well, in my husband's case, it meant taking on yet another, high-risk surgery to deal with pannus and valvular strands on his mechanical valve. Something few have ever heard about, seen, or handled. So far, it has given us an additional 7 precious years together.
What to Look For
At the Foundation we are often asked who can help those with BAV and other forms of Thoracic Aortic Disease (TAD). It remains a difficult question to answer. Knowledge and technical skill are a must. But there are some other important things to consider.
It should be someone with a heart
for aortic disease in the chest.
Someone with a heart so large
that they generously give their time and talents.
Someone that truly cares for you and your family.
Someone skilled enough
and fearless enough
to take on your "dodgy" tissue.
Captured in the picture above,
I was privileged to stand between
two such great hearts.
I knew I was surrounded
by a climate of hope,
an atmosphere of caring.
May you find the same.
President, Bicuspid Aortic Foundation