Bicuspid Aortic Foundation "Stories of Hope BJ Sanders"

Dear Reader,

This is BJ's story, but I am moved to write a preface here. You are about to read one woman's search for help with BAVD. You will read how she found medical expertise to help her. You will also read how BJ and I met. I will never forget the Saturday morning I opened and read that first email from her. Individuals and families who live with BAVD recognize each other immediately, and those first emails between us were the beginning of a most treasured friendship.

I hope all who read this will recognize in this experience the essence of the Bicuspid Aortic Foundation: each of us helping one another - patients, families, and physicians - to live with joy and freedom as together we meet the challenges of BAVD.
Arlys Velebir

From Fear to Freedom
BJ Sanders' "Quest for Freedom"

It was while living near the "bush" in Africa that BJ first suspected something could be wrong in her chest. Feeling heart palpitations, she was all too aware that her nearest resources were the local witch doctors. She could not wait to return to the States to be examined.

Upon returning home, BJ was initially diagnosed with a regurgitating bicuspid aortic valve. The doctor said it was nothing to worry about. After the next echocardiogram, the doctor was still not concerned. However, BJ compared her echo reports and noted an increase in the size of her ascending aorta. What did that mean? She was determined to find out. It was the beginning of her quest for information and expert medical care.

Eventually, BJ would put the pieces of the puzzle in her body together - the puzzle called BAVD. She has also discovered that the genetic component of BAV disease runs through her family - another relative lives with a bicuspid aortic valve and aneurysm.

The Quest . . .

Despite spending many hours searching the web, BJ remained disappointed with the lack of information. She began to refer herself to multiple clinics, receiving vastly different opinions. She was advised to limit her lifting to under 15 pounds at one clinic. Other clinics said it did not matter how much weight she lifted. She was diagnosed with Marfan Syndrome at still another clinic. One surgeon wanted to perform surgery immediately.

And the Fear

BJ became further confused, and her fear began to increase. Performing her work as a pediatric physical therapist, she lived in fear every day - fear that her aorta might rupture while lifting her patients.

Help in Cyber Space

As BJ was seen at these different clinics, she would ask if research was being done on bicuspid aortic valves and the association with aneurysms. The usual responses were " I am not aware of any", or "bicuspid valve aneurysms rarely rupture". BJ became determined not only to find help for herself, but to meet others with the same passion she had for an organization that would help bicuspid patients and others with aortic disease. She relentlessly continued her web search for articles related to bicuspid aortic valves and thoracic aneurysms.
One day BJ discovered the Cedars-Sinai Thoracic Aortic Surgery Program's web site, containing information for bicuspids with aneurysms. She was ecstatic! The site encouraged patients to write to the thoracic staff. To her surprise, BJ received a response from the program's Director himself, Dr. Sharo Raissi. Ultimately, she became Dr. Raissi's patient, her bicuspid aortic valve and aorta were accurately imaged and assessed, and the volatile blood pressure that had plagued her so long was brought under control.

As BJ became equipped with knowledge through Dr. Raissi, she began to lose some of her fear. Little did she know then that she would later volunteer to help Dr. Raissi fulfill a shared goal, helping others through the Bicuspid Aortic Foundation.

BJ found that her own experience, with conflicting opinions and confusion about BAV and ascending aneurysms, continued to be reflected in the online forums she read. However, one day she read about a Mom's desperate search for help for her son. The person that responded to this mother had extremely accurate information and tender advice. BJ was amazed to see there was someone out there that actually knew about this condition. This inspired her to write an email to the address posted and thank this person for providing accurate information. It was the beginning of an enduring friendship with Arlys Velebir. There was an immediate bond. Sending that email off to an unknown person, BJ could never have imagined that it also would lead to the Bicuspid Aortic Foundation and that one day she would serve on the Board of Directors for the Foundation with Arlys as the Chairman. Her dream was finally coming true!

Watch and Wait

Today BJ considers herself fortunate to be in the "Watch and Wait" category. She understands her situation and is confident that she will choose the appropriate time for her surgery.

BJ keeps her blood pressure under excellent control and has state-of-the-art imaging annually. Her current experience is what she wishes for all others with BAVD: finding accurate information, expert care, and the opportunity to choose the place and time when surgery will be done. BJ is firmly convinced that no one should ever find they are in an emergency, "in the wrong place, at the wrong time".

Freedom

BJ describes her life today as one of freedom - freedom from fear. She will always have the BAVD that was present at her birth. The seriousness of having a BAV and an ascending aortic aneurysm has not changed. What has changed is BJ's position, because she now has accurate information and expert care.

BJ has resumed her former activities, enjoying life with confidence and freedom. She no longer is shadowed by fear as she makes the daily rounds of her pediatric practice, but is able to confidently serve her patients.

And once again, she has traveled to far-away places. . . .

Contact Us

Bicuspid Aortic Foundation
30100 Town Center Drive, Suite O-299
Laguna Niguel, CA 92677

Telephone
Toll free in the US (888) 310-HOPE (4673)
or
(949) 495-0027

Fax: (949) 606-0413

Email: contactus@bicuspidfoundation.com

Copyright � 2004 - 2007, Bicuspid Aortic Foundation.
All Rights Reserved.

Disclaimer

The information on the Bicuspid Aortic Foundation website is provided for general informational purposes only. This information is not professional, legal, or medical advice. Any medications, products, or treatment mentioned are presented as information only and do not constitute any recommendation, approval, or endorsement. Any information is general in nature and is not a substitute for medical care. You should contact a physician or other qualified medical professional for advice about all health-related conditions.

The Bicuspid Aortic Foundation, including its officers, directors, volunteers and any others acting on its behalf, individually and collectively, make no representations or warranties, express or implied, regarding the contents of this website, including its accuracy, completeness, or reliability.

Any links or references to other websites provided on the Bicuspid Aortic Foundation website are made available as a convenience only. The Bicuspid Aortic Foundation has not reviewed all of the websites linked to this website and is not responsible for the content of these sites or your use of them.