Living With Marfans


July 2, 1990, my life was turned upside down. I had just returned from a trip to Montreal with friends and I immediately headed into the Emergency Room at Beth Israel Hospital. I told the doctors that the night before while having dinner, I could not taste my steak and I had lost feeling in my arm. For some reason, I told myself to relax and that I was going to be okay. On the ride home to Boston, I asked one of my friends to buy beer and I proceded to drink the whole way back (which is a story in itself)  After running several tests, including an Echocardiogram and Transesophageal Echo, they found that I had a markedly dialated aortic root approximately 8 cm with 4+ aortic insufficiency. I then underwent an emergent Bental procedure with placement of the entire ascending Aorta to the origin of the Subclavian Artery.

I was in the hospital nearly a month. After returning home for another month, I went back to work. I was about 25 pounds thinner but thank God, I was alive. One thing that had become very apparent, my life and whole perception of Marfans, in two short months, had taken a major turn.


*Coumadin and Atenenol had become my daily staple (for life).
*Most forms of exercise were forbidden (especially weightlifting).
*Drinking was highly discouraged due to the blood thinner taken.
*Weight gain was going to be even more difficult.

After a few more months, when I got back into the flow of my day-to-day life, I began to notice changes in my health. My fatigue level seemed to be even greater than before the surgery as well as my body pain and shortness of breath. At the time, I attributed it to just my body recovering from surgery.

As a few more months went by, I told my cardiologist about my symptoms and he felt that the medications could have something to do with how I felt fatigued.   As far as the pain went, he wasn't concerned since I didn't exhibit any signs that would show heart complications.  As far as the shortness of breath, my sunken chest could be a contributor to that, but my lungs seemed clear.


Some of my friends and family who have been there for me.
David (cousin), Shaun (nephew), Jon, Lloyd (friend), Chuck (brother-in-law) and Steven (friend)