Tuesday, December 25, 2012

Living with an Aortic Dissection & Marfan Syndrome

Living with a dissected aorta, Kevin Songer & granddaughter Cali
I experienced a 'root to foot' aortic dissection on November 30th, 2011.

Though I received a St. Jude's Aortic Valve and Dacron aorta, my descending aorta is still dissected from the graft down to my feet.

Its been just over one year now and I am still alive.  Challenges arise everyday though.

One of my most significant areas of frustration has been the lack of available information concerning  the dissection, my medications, available treatments, steps I can take to improve the condition, 'mysterious pains', 'what-if's' and so much more.

Granted, the National Marfan Foundation (NMF) is a great place to start yet my particular significant issue is the dissection.  NMF provides a good deal of information regarding aortic dissections but does not address many questions I have had over the past thirteen months.

Living in Florida, I've joined the Florida Marfan Support Network on Facebook, and subsequently been blessed with meeting many others encountering similar issues there.

Moreover,I've even began my own Facebook Marfan page!

And I've been wanting to start a weekly Aortic Dissection blog, so getting a jump start on the New Year's resolutions, here goes.  Look for my thoughts of living with a metal valve, Dacron aorta, Marfan and most importantly a dissected descending aorta that could aneuryize any day.

With a wonderful wife, grown children, two teens and grandchildren I want to stay alive as long as possible.

Whether you are experiencing an aortic dissection for the first time or a veteran of the disease, your thoughts and comments are also welcome.

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