Bicuspid Aortic Foundation View From Here

February 20, 2006

February is the month of hearts and valentines....

This year, Valentines Day morning found my husband and I in a very special place dedicated to hearts - a cardiac surgery intensive care unit. Later that day he went to a private room on the cardiac surgery floor. We are glad to be home again, his third "open heart" surgery and second replacement of his aortic valve behind him.

It seems a long time ago now (1990) since a life-long heart murmur first made him very ill. Surgery was performed then to replace his heavily calcified, narrowed bicuspid aortic valve. From then on, he had a mechanical aortic valve and was on coumadin to prevent blood clots forming on the valve. The soft ticking sound of the valve that replaced the noisy turbulence from his own BAV was music to our ears.

In 2001, when he had surgery for ascending aortic aneurysm, the mechanical valve looked good and remained in place. At that time he became part of a special group - those with BAVD who have had both their bicuspid aortic valve and their ascending aortic aneurysm replaced. It was a great joy and relief to have the aneurysm safely removed.

However, on November 30, 2005 he joined another group of individuals - those who experience a heart-related stroke, even though their blood is properly anticoagulated. Why do strokes like this happen? Transesophageal echocardiography showed the probable cause in his case -- "strands" or "threads" of tissue were seen floating on the "bottom" or "heart side" of the mechanical valve. Such strands are a potential source of stroke because they can break off and go to the brain. When and why did these strands form? It is not well understood. Although there are some helpful references in the medical literature, it is another pioneering aspect of this condition, and many more answers are needed.

The stroke my husband had that day was extensive. The valve and these strands needed to come out as soon as my husband was well enough to withstand surgery, before they could cause another stroke. February 13th was the day. During surgery his aortic root was enlarged with a bovine pericardial patch, making room for the new tissue valve that now opens and closes with each beat of his heart.

As I write this, it is just one week after his surgery. So far, he is right on track with recovery. He is amazing, and so are the wonderful physicians who care for him. There are no words to describe the surgical skill that gave him a new valve in a very complex setting inside his chest. And there are no words to convey what it means to have come safely through the surgery which removed the mechanical valve and attached tissue strands.

And so today, I want to share our hope with you. I was asked once why the Foundation places so much emphasis on hope. It is because we must always have hope, no matter what challenge we face with aortic disease. Without the hope offered by caring, skilled medical professionals, we would never have seen the rainbow of promise against a cloudy sky, the hope of brighter days ahead. Because we had hope that there was a way to help my husband, we also found the courage to move forward toward our goal. We continue to need hope each day as we work through his recovery.

This is the climate of hope that we want to share with others, an important aspect of the Bicuspid Aortic Foundation's mission.

I know so many of you reading this also need and share this hope with us.......hope in seeking the best possible expertise today..... hope for a brighter tomorrow.....

As the journey continues to unfold, may we always live in a climate of hope.

With very best wishes to all,

Arlys Velebir

Chair, Bicuspid Aortic Foundation

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

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