Friday, July 3, 2015

Bicuspid Aortic Valve and Big Hearts, Hearts of Champions

Our wedding anniversary is this month. 

Perhaps that is why I am moved to write about special hearts,
 as we celebrate the day my heart was joined 
with a very special one!

BAV and Big Hearts

My husband was born with a bicuspid aortic valve, and while no "condition" should ever define someone, in the case of those with BAV, there are some wonderful traits that seem to come along with this "defect".  Those with BAV seem to have large, strong hearts, that far exceed the norm. How much do their "big hearts" have to do with the energetic, active lives they typically lead? Perhaps a great deal.

My husband always loved physical activity. Forbidden to play rigorous sports because of his heart murmur, he turned to weight lifting with great intensity. Of course no one knew he had BAV then. Even after his BAV was removed, lifting weights was not forbidden. Today, it would be. And so I married a strong fit man, who exercised with discipline and rigor! Little did I know then that I would meet so many others with that same intense love of physical activity.

Secretariat - an Extraordinary Heart

My family no longer kept horses by the time I was born, but I have always loved them! I am fascinated by the legendary Secretariat. Secretariat had a very special heart! No, it does not seem to have been abnormal in any way. But it was extremely large! He also had tremendous muscular strength throughout his body. In the video below, he is 12 years old, which would be late 40's in human years.

I found it very interesting that a great deal is understood about the genetic lineage of Secretariat's heart.  "Research indicates that the X chromosome is responsible for the large heart found in outstanding race horses". BAV is an inherited condition, but although genetic studies are underway, there is so much complexity and few, if any, answers.

BAV and "Generous Hearts"

Reading about Secretariat's heart reminded me of this presentation from one of the Bicuspid Aortic Foundation conferences. Those born with bicuspid aortic valves have large, strong hearts!

A few months ago now, my husband had a thorough cardiac check up, including blood work. The cardiologist was amazed that his heart muscle is so strong, given that he has had three open heart surgeries and is no longer a young man! That strong heart muscle, as well as strength through out his body, has carried him not only through those three surgeries but the damage from a major right brain injury almost 10 years ago.

Others with BAV also receive these glowing assessments. Recently a young man who has undergone 4 surgeries in his short life was told that there are virtually no traces of injury, none of the detectable "damage" usually seen after open heart surgery.

Yes, these are special hearts!

Those with BAV are at risk from infection, heart valve disease, and aneurysms. However, they have other characteristics that help them handle and recover from those threats in ways that the "average" person may not.

A young woman who had her first BAV and aneurysm surgery over a decade ago recently was diagnosed with a terrible heart infection from a seemingly rare source, Q Fever. She has undergone two major surgeries (heart valve and aorta) in the last few months. Seeing her today, there are no visible signs from the terrible infection in her heart, the multiple surgeries that would have felled someone less strong. From her medical history, doctors would expect to see someone disabled, if still alive at all. But no, those wonderful muscles, including those of her heart, respond so well in cardiac rehab. What a wonderful, special heart!

Defying the Odds, BAVers Not Average

And so when I read accounts saying that those with BAV generally live as long as the general population, I know that it is because BAVers are special. The "average" person is not typically as well equipped, as strong and vibrant, going into surgery, fighting infection, etc. And yet, some of them lose their lives, always much too young.

BAVers should actually live much longer than "average", because they have so many advantages, if only they can avoid or overcome the threats from infection, their heart valves, and aneurysms. They are not "average".

Despite his special heart, Secretariat only lived to age 18. He developed laminitis, and it could not be cured.

This July, as we celebrate another year together, despite all the threats to his life, my dearly beloved husband continues to defy the odds.  And so, we have something to share from our life's experience, a message of hope and courage:

To those born with BAV
and to those who love you,
always remember,
you have a big heart,
the heart of a champion!

Indeed, you are very special,
and so is your heart!

With all best wishes,
Arlys Velebir