Tuesday, October 11, 2011

"We Thought That My Family Died of Heart Disease"

Sadly, it is not unusual for the Foundation to hear from someone with thoracic aortic disease (TAD) who has already lost other family members - loved ones that they and everyone else assumed died from heart attacks. In one family, two brothers had already died of presumed heart attacks. When the third brother died, it was discovered his aorta had torn and killed him. All three men died in the prime of their lives.

One man wrote to tell us of the discovery of an aneurysm in his chest, and mentioned it was taken for granted that all the men in his family had heart trouble and died of supposed heart attacks. There were no autopsies. Could it actually have been their aorta?

The cause of these deaths is now questionable and deeply troubling, once a thoracic aortic aneurysm has been  found in these families.

Michael Kirk is among those who in hind sight believe members of their families lost their lives to thoracic aortic disease. Michael, a cardiac intensive care nurse, spoke about his own experience with aortic dissection at the Foundation's Conference in 2007. There are some unfortunately familiar themes as Michael tells his story - "your heart is fine", "do you have anxiety?", "you don't fit the profile for someone with aortic dissection", . . . .

In the following video, Michael tells what happened to him. Incredibly, his aorta somehow held together for 68 hours before his dissection was diagnosed.

In the video below, Michael talks about how, despite being a medical professional himself, he was told "you have to be crazy to be here". When his dissection was ultimately found, it became apparent to everyone that they had not listened to him. It also became apparent that pre-conceived ideas about who has thoracic aortic disease and what they look like clouded the medical team's thinking and put Michael at grave risk.

A paper was published in September 2011 in Germany that addresses the importance of awareness: Diagnostic pathways and pitfalls in acute thoracic aortic dissection: Practical recommendations and an awareness campaign. The authors  mention a poster campaign, "Thinking of it can save lives".

Finding TAD as early as possible is key to avoiding emergencies. But when someone with TAD does arrive at the ER seeking help, every moment counts in finding the problem. It begins with thinking about the aorta.

Arlys Velebir
President and Chairman
Bicuspid Aortic Foundation

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