My Journey Through Fear, Complacency
and Peace
FEAR
 |
| November 2013 |
My aortic
journey began 13 years ago when I found out that my aorta was growing. I began
to search for centers that had aortic programs. I became more confused as I
went from center to center. I was initially misdiagnosed as having Marfan syndrome
and surgery was immediately recommended. I was very afraid of aortic surgery
which required hypothermic circulatory arrest (lowering body temperature and
arresting circulation); therefore, I continued to search for an expert opinion.
I was finally diagnosed with a bicuspid aortic valve. It seemed like no center
knew what to recommend to someone with a bicuspid aortic valve and ascending
aortic aneurysm.
For three
years I lived in fear of my aorta rupturing. I had been told different levels
of lifting at each center. This was a concern since my profession as a physical
therapist required heavy lifting daily. I had labile high blood pressure that
was never addressed. To my surprise I met a kindred soul on the internet whose
husband had previously had surgeries for his bicuspid aortic valve and
ascending aortic aneurysm. She was extremely knowledgeable, and I clung to her
every word. I had truly met my Aortic Angel, Arlys Velebir. Little did I know
that very soon over the next decade she would become the Aortic Angel for
hundreds of people! Once again I began my search on the internet and to my
surprise I found a new website from a hospital in Los Angeles that actually
acknowledged bicuspid valves.
The website
said to leave a message. I have never been so surprised when an aortic surgeon
was the one to respond to the message. He spent a longer time on the phone with
me than all of my appointments put together. I remember thinking maybe this
surgeon needs more business! The first thing he did was to address my blood
pressure and assist me in lowering it. I learned more about my condition in
that one phone call than I did throughout my entire three year journey! The
surgeon was Dr. Sharo Raissi who would follow my scans for the next decade and
eventually perform an aortic aneurysm repair and a bicuspid aortic valve
replacement for me.
COMPLACENCY
 |
| Shortly before traveling to LA for my surgery |
A decade ago
I was blessed to be invited to participate with Arlys Velebir, Carrie Mettler,
Fiorenza Courtright-Lucas and Dr.Sharo Raissi in establishing the Bisuspid Aortic
Foundation. Our most urgent dream was to have an organization that would assist
those with bicuspid aortic valve disease to find accurate information about
their condition and to help them locate expert care. Throughout a decade I
believed firmly in practicing the ABC’s for Aortic Care (A. Accurate Testing, B.
Blood Pressure Control and C. Comprehensive, Individualized, Care). But I
gradually slipped into complacency with my aortic care. My aorta was stable for
a decade. I attributed this to excellent blood pressure control and began to
believe that perhaps my aorta was not fragile and would always be stable.
I
mentioned to Dr. Raissi that I was late in getting my MRI, but that I was not
worried because my blood pressure was so low. He quickly and as always kindly
responded, “It is good to have a low blood pressure, but it is no substitute for
good surveillance.” This statement immediately set me into action.
I was also
in denial about the pain I was having in my chest which radiated to my jaw.
When I experienced this pain I did have fear, but as the pain subsided I would
choose not to report the pain to anyone. As the pain became more frequent, I did
share about it with my dear friend, Arlys. She kept saying to me that
aorta’s can "talk to you". She shared with me numerous stories she had heard
through other patients. Sometimes they would go to the ER, and it would be dismissed as anxiety! I am so grateful for Arlys, who continually expressed her
concern about my chest pain. Almost simultaneously my MRI was read by Dr.
Raissi, during my time of increasing aortic pain.
Years ago I
prayed that when Dr. Raissi said it was time for me to have the surgery I
would have a sense of peace and accept his advice. To be honest, it did catch me
totally off guard, but I knew I had the best expert care possible. I had so many
questions, but when he so gently said, “BJ, we just don’t want to lose you” God
gave me that sense of peace that I had prayed for so long ago. My husband
and I quickly made arrangements to fly 3,000 miles from coast to coast, meet
with Dr. Raissi to ask our questions, and make our final decision. Dr. Raissi
answered all of our questions and calmed any fears. I knew I was in the hands of a blessed
cardiothoracic surgeon.
 |
| In ICU, with Dr. Raissi, September 2013 |
I always
knew that Dr. Raissi was a special man and medical caregiver. For many years he
always instilled confidence in me during my “watch and wait” phase for my
aorta. But it was not until I experienced his servant hood during my surgical
repair of my ascending aorta and bicuspid aortic valve replacement that I truly
know the depth of his heart. He always
has a way of helping you see a complication in a positive light. His
intelligence and patient instruction alleviates any fear that might arise. His genuine compassion is so comforting
especially during a complication or crisis.
In all situations he is calm and decisive. He follows you throughout
pre-op, surgery and post op. He stays with you throughout any complication. He
gives superb care post hospitalization and is always readily accessible when
you need his advice. When patients tell him how grateful they are for him, he
quickly responds, “No, it is the other way…I am grateful for you! I am grateful
that God can still use me to help others!” He epitomizes humility. He does not
have an ounce of arrogance. Truly he is a blessed servant to all of his
patients.
 |
| Now in my third month after surgery, November 2013 |
It is my
hope that my story will inspire people with bicuspid aortic valve disease to
avoid becoming neglectful of the ABC’s of Bicuspid Aortic Care. Always insure that you have A. Accurate
Testing, B. Blood Pressure Control and C. Comprehensive, Individualized, Care. Please
don’t let yourself drift into complacency with this “OTHER KILLER IN THE CHEST”!!!
B.J. Sanders
Board Member,
Bicuspid Aortic Foundation
incredible story and journey!
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