Saturday, May 11, 2013

Marfan Syndrome? Aortic Dissection? Say What?

The below photo was taken six months before my aortic dissection.  I'm standing on a wonderful Green Roof at Breaking Ground Contracting in Jacksonville, Florida.
Aortic Dissection occurred six months after this photo by Ryan Ketterman of Ketterman Photography

I never had a clue as to what Marfan Syndrome was or that my connective tissue was slowly unraveling.

All the signs were there yet how was I supposed to know about these critical medical issues?  I had periodic medical checkups like most, but never once did any of my primary care physicians ever suggest I should be tested for a connective tissue disorder.  No one told me that all my episodes with strained or pulled muscles, multiple hernias, buck teeth before braces, and a tall lanky physique were indicators of Marfan Syndrome.

Even when my surgeon finished repairing one of my stomach hernias and told me "you have no muscle structure - eat more meat!" did he mention the possibility of a connective tissue disorder.  I have so much mesh in my body I could be a mighty good air filter.

My BMI was in the normal range.  I worked out.  We used EVOO in cooking and I had a high fiber diet.

Sure there were stresses, but everyone experiences the challenges of living in today's society, supporting a family.

But I though my blood pressure of 135 / 80 was ok.  Big time wrong.

Today I keep my blood pressure around 105 / 55 through diet and medications like Metoprolol and Losartan.  That is because though my ascending aorta is now a Dacron tube, up and over the arch the descending portion of my body's largest blood vessel is still dissected.  The inner layer, the intima layer has pulled apart from the middle and outer aortic layer.  My aorta is now like a very, very thin walled balloon.

Want to learn more about living life with Marfan Syndrome?  Follow the blog here for all the inside scoop, the ups and the downs of live with a dissected aorta and a connective tissue disorder.

Want more information on Marfan Syndrome?  Check out all the resources on the National Marfan Foundation website.

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