"... our patients and we need courage to work and live at the limits of medical competence
and knowledge." "A Partnership in Courage", Constantine Mavroudis, MD, Presidential Address,
Forty-ninth
Annual Meeting, Southern Thoracic Surgical Society, 2002
Physicians who specialize in treating aortic disease do so with great
courage. Their work is on the frontiers of medicine and surgery, where
the unknown challenges the known. Their work is there because their patients
are there - "at the limits of medical competence and knowledge." For
it is patients who define the reality of their conditions, quite simply, by what
happens to them.
What is happening to those with Bicuspid Aortic Valve Disease?
Bicuspid Aortic Valve Disease (BAVD) can be deceptive, posing as a rather innocent
malformation of the aortic valve. The review article by C. Ward published in 2000 paints a different picure, beginning with these words, "The association
of bicuspid aortic valve with aortic stenosis, aortic regurgitation, and infective endocarditis has been known
for almost 150 years and with dissection of the aorta for 75 years. These complications
are mentioned only briefly in cardiology textbooks and a standard work
on medical insurance underwriting implies that it is usually a benign lesion:" The author goes on to contrast an apparently common perception -- that a
bicuspid aortic valve may often remain harmless until older age (70) -- with
what is found in published medical literature, stating "However, on the basis of published reports by this age the majority of patients will have
died or developed serious symptoms requiring surgical intervention." Published reports contradict the perception that
it is only a few, as they reach older age, who are adversely affected.
Perception and reality can be very different. The passage of time can be revealing,
but only if we look carefully at what is happening.
work published in 2002 by Dr. Russo and others from Milan provides long-term insight into what happened to BAVD patients
after their aortic valves were replaced. This paper highlights the importance
of attention to the ascending aorta, even if the aorta appears normal at the
time of valve replacement. This is one aspect of the treachery of Bicuspid Aortic Valve Disease -- an aorta
thought to be fine at the time of valve surgery later may develop a life-threatening
bulge or tear.
Recognizing the frontiers around them, physicians are charged with continually advancing
what is possible, pushing beyond today's limits of knowledge and
technology. The relatively recent advancements in treating aortic disease in the
chest are the result of persistence in the face of a difficult condition. As
the title to Dr. Mavroudis' address describes so well, this is "A Partnership
in Courage" between patients and physicians, pushing through barriers as
they blaze the trail, ultimately saving lives.
"In our rapidly changing field, we oftentimes show courage when performing an operation
that involves both uncertainty and risk. If the operation is successful,
much of this courage is transferred to our patients who now will live with
the uncertainty of the long-term result and the management of the disease process
for the rest of their lives." This is how Dr. Mavroudis described the transfer of courage between surgeon and
patient. Patients and families with BAVD today are defining what "living
with the long-term result and the management of the disease process" means.
Reflecting on my husband's experience, it once seemed that replacement
of his bicuspid aortic valve would be the relatively simple, long term answer.
That initial surgery has been followed by two additional "open heart" surgeries,
a stroke, and a TIA -- all related to BAVD. No, time has shown that it has not
been a simple, benign condition. And it is with profound sadness that we remember
those whose lives have been lost to BAVD, often without warning. Through
it all, our hope is that knowledge has been gained that may help others find a
smoother path, a safer journey with BAVD. May the experience of those with BAVD
today benefit all who follow.
For families and medical professionals,
by families and medical
professionals
Creating a climate of hope, an atmosphere of caring, and a source of information for
all who are touched by thoracic aortic disease and the medical professionals
who care for them.
