TAD Awareness 2019 - A Virtual Walk about BAF's Beginnings

September is Thoracic Aortic Disease (TAD) Month. What is it about?  Do we need a month just for TAD? Maybe we can explore this together, on our virtual walk today. This beach is a great place to walk - ocean breezes, blue skies, and the sand beneath our feet! Let me start by telling you my own experience with aneurysms and how the Bicuspid Aortic Foundation was born.

Aneurysm - A Medical Term

 There are technical words -  medical terms - used to accurately describe, communicate, and treat conditions and diseases. Medical textbooks and papers are appropriately written with such words. Thoracic aortic disease has these words, and I try to be very careful to use them properly. The visible indication of disease of the aorta in the chest is the medical term aneurysm, taken from the Greek, meaning widening out or dilatation. Some day maybe there will be other markers to find disease in the aorta even earlier!

My Definition of Aneurysm
For me, the most important meaning is the human experience. And so, on this walk, it is not the technical meaning I want to explore, but the meaning as defined by the lives who have been touched by it. Let me tell you about some of them.

Aneurysm and My Friend
Aneurysm, not in the chest, but in the brain was my first actual experience, my first real understanding, of this word. It entered

Decades have come and gone since
Saying goodbye at my friend's graveside here
She remains in my memories always,
Where she is forever 33

my life on a Sunday afternoon, with a phone call. The message was unbelievable - my friend was hospitalized with bleeding in her brain. Over the next few hours, there was more bleeding, nothing could be done, and gradually her still young body began to fail. She was gone. My memories of something so shocking have not faded. I still hear a little boy, scarcely more than a baby, crying for his mother. I still feel the grass beneath our feet as we walked to the graveside for that final goodbye. My definition of aneurysm stems from this experience - a crying child, a devastated husband - broken hearts forced to go on without someone so loved, so needed. Nothing could be more cruel than such a sudden, deadly killer.

Aneurysm Where?
I continued to be aware of brain aneurysms because of the loss of my friend. Did you know that aneurysms could be in the chest? I didn't. I thought they were in the brain.

Shocked and Terrified - an Aneurysm Above His Heart
When they stumbled upon the aneurysm above my husband's heart, I was shocked. I was terrified. I didn't even know it was possible! Deep inside was that real life definition of aneurysm I had learned years before. I thought this was going to kill him!

How could this be? He was supposedly fixed for life by his valve replacement surgery. I thought somehow they injured him when his BAV was replaced. After all, no one was saying anything to BAVers about aneurysms back then (1990). (They should have, as there were medical papers that associate BAV and aortic aneurysm in the chest - my favorite is Dr. Abbott's paper published in 1928!)

I kept my worst fears inside as we searched for answers. It was difficult, but we found our way to help.

Killer Disarmed by Successful Surgery
Can you imagine the feeling of relief when you are told that a ruthless killer has been disarmed? It was a wonderful, physical sensation that flowed though me, when the nurse told me that the aneurysm was removed, that the surgery had gone very well! Every step to reach that point, to find someone to help us, was so worth it! The aneurysm was gone. I would not find myself prematurely weeping at a graveside because of an aneurysm!

I knew how hard it had been to find that help. My only thought was to make it easier for others to learn about BAV and aneurysms - because when found in time, this killer could be disarmed before causing terrible bleeding inside the chest (dissection, rupture). I had seen it done!

BAF is Born
In time, out of the conviction that accurate information and knowledge can empower us to find help, the Bicuspid Aortic Foundation came into being.

After officially becoming a nonprofit, the first donation the Bicuspid Aortic Foundation received was a check in memory of Doug Grieshop. Doug's widow was the first family to contact us about untimely death from an aneurysm.  Doug had just turned 33 . He left behind his wife, young son and unborn daughter, other family members, and friends. Aneurysms, at their worst, take one life without warning and cause indescribable pain and suffering to those left behind. It is 15 years this September since they lost Doug, in 2004.

BAV and Brain Aneurysm
I know this is supposed to about aneurysms in the chest, this month of  September. Somehow, as we walk together, I am thinking of my friend and fellow board member at BAF, Carrie Mettler. Clicking here,you will find her story about BAV and brain aneurysm.   The discovery and successful treatment of her brain aneurysm is proof that those with aneurysms of the brain need not be terribly injured and lost either, when it is found in time!

Why TAD Awareness?
Doug Grieshop's family was the first to contact us about an aneurysm causing sudden death, but sadly, many others have followed.

We do not want anyone to experience an aortic emergency, 

we do not want to lose anyone else,

which is why there needs to be more awareness. 

 It is still a problem for those at risk to receive proper imaging of their aorta! Less than a year ago, I urged a family friend to request a CT scan of his chest (an echo had found a BAV). The cardiologist refused, saying it was unnecessary! Can you imagine saying it is not necessary to unmask and disarm a killer?! When physicians may not know or understand, it is important to keep seeking help through other opinions. Our friend eventually received the expert screening he needed, elsewhere!

This has turned into a long walk, so let's enjoy the sunset before we leave! 

Thank you for walking with me, 

Remembering those we have lost,

Others who were saved ,

As together, we create a Climate of Hope,

~ Arlys Velebir

                          Bicuspid Aortic Foundation