From Anonymous
Posted at 4:30 AM
I'm 44 years old, 3 operations in the past 12 years and lived to tell about it. Many others have not been as fortunate as I have. Sooner or later we will meet again.
I have some huge scars but I'm not scared of Marfan.
There are a lot worse things than Marfan, I admit to feeling sorry for myself a long time ago but I cast that away. Good riddance, be glad for what you have, make the most of what can be and forget about what might have been.
A few things I know for sure...
If you have frequent Marfan related aches and pains like I do - suck it up and get moving!
Join a Cardiac Rehab program. Regular controlled exercise has contributed greatly to my quality of life.
If you wait until your body is in major crisis you're too late, that will kill you.
If you have to have surgery go to a surgeon who has successfully repaired Marfan patients, don't settle for anyone else, we are different.
If your Doctor acts like God, find another Doctor.
Play hardball with your insurance, I have travelled for all 3 surgeries and went to the best surgeon I could find. Insurance paid every time and saw things like I wanted them to.
Contact the NMF if you have any questions, those folks know more about this than anyone.
Support the NMF.
Thank You Jeanette for all you do!