Thursday, November 28, 2013

A Dream Come True - My Life with Bicuspid Aortic Valve Disease

My Journey Through Fear, Complacency and Peace

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.

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