Sunday, March 23, 2014

Bicuspid Aortic Valve and Aortic Disease Answers Are Blowing in the Wind

Kyle Wilson
sudden death
BAV and aortic dissection
Chuck Doherty
sudden death
BAV & aortic stenosis

"Yes, how many deaths will it take 'til he knows

That too many people have died?

The answer my friend is blowin' in the wind,
The answer is
blowin' in the 
                                  - Bob Dylan, 1962

Doug Grieshop
sudden death
BAV and aortic rupture

Friday, we received that most dreaded message once again.

Because we know those with BAV very well,
reading the words,
we feel we know this person, born with BAV.

". . .  very athletic."
". . .  so healthy."

We hold our breath . . . .

"He is dead."

And then we cry.

How many, oh, how many, must die?

Sometimes we read of their tragedy, although we may never meet these families. 

Sometimes, a bicuspid aortic valve has been found,
 and the person was under medical care.

Sometimes the BAV had not been diagnosed.

In both scenarios, there is death.

Why, oh why?

Sahib Singh Vaseer
death from
BAV and endocarditis
We are left to ponder very serious questions.

Where are the answers?

They are as ethereal 
as wispy white clouds,
driven by the wind.

Other families, like mine, avoid death
 but cope with life-long injuries,
both physical and emotional.

That is why Robby Benson, 
a veteran of four open heart surgeries,
entitled his book

A recent paper from a consortium of centers studying BAV, with authors from around the world, is aptly titled, "Surgical treatment of bicuspid aortic valve disease: Knowledge gaps and research perspectives."

We simply cannot tolerate, cannot bear the tremendous ache with every injury, every death in BAV families. Yes, their trileaflet aortic valve family members also are at risk. These knowledge gaps are not small things.

Those pictured here speak to us of major complications that may strike down even the young and strong - the aortic valve itself, aortic dissection, aortic rupture, and infection (endocarditis).

To remind us all of the tremendous problem, and our shared responsibility to conquer this centuries-old monster, this blog has adopted "Blowin' in the Wind" as our theme song. 

Glimpses of small 
numbers of people, 
watched only
for a few short years,

Fragments of information
blowing in the wind,

Will not answer our questions,
will not satisfy our needs.

May we all resolve
to take action,
to free humanity at last
from this plague.

                                                                                                 - Arlys Velebir
                                                                                                   Bicuspid Aortic Foundation