I am a Marfan patient who has been monitored and treated with blood pressure meds for about 20 years. My aortic root was at 4.7 cm prior to dissection. My dissection extended from the aortic valve all the way to the iliac arteries. 

I survived the flight for life ride and a nine hour surgery. My surgeon described my tissues as like sewing butter. After almost three years, a CT scan shows no change in the aortic dissection, no aneurysm, however it also found a small tear beginning in my pulmonary artery. This usually indicates high blood pressure in that vessel. 

Doctors are reluctant to confirm the high blood pressure with a heart catheter for fear of tearing the artery further. It appears that this condition is very rare even among people with Marfan syndrome.  We live moment by moment and do our best to enjoy each one. 

– Barbara