Well, where do I start? It was bad enough when I was one of the lucky 100,000 to contract Guillain-Barré Syndrome and now I am a proud owner of another syndrome. This one is not quite as rare, 1 in 5,000 are playing along this time, however it is to my understanding that it is still rather mysterious. This winning syndrome is Marfan Syndrome. For those that have no idea what this is I hope this will help. According to the National Marfan Foundation, “Marfan syndrome is caused by a defect (mutation) in the gene that tells the body how to make fibrillin-1 — a protein that is an important part of connective tissue.” (http://www.marfan.org/marfan/2416/Cause/)
Does this make me a mutant, or just defective? I truly know that it is neither because He makes everything glorious and I am His. I guess I would say I am just a little more worn than others.
I have a handful of the symptoms of Marfan but the worse is the Aortic Dilation and Aortic Regurgitation (what, my aorta vomits, really?). For more details please visit the Heart and Blood Vessels section of Marfan.org
Your aorta is supposed to be equal width for the entire length and mine is bulged at the root (where is connects to the heart). All of this was discovered from and echocardiogram that was done when I was in the hospital recovering from GBS. To get more detail on my status I have a CT scan tomorrow (July 16). It is inevitable at this point that I will have to have this part of my aorta replaced. Will it be this year, in 5 years, how about 10? We don’t know and neither does the doctor. To my understanding with Marfan it all depends on how rapidly the width of the defective part of the aorta expands. The fear is that the wall with rupture and even if you aren’t a doctor I think you will realize this is not a good thing.
Am I scared? You bet! I know that doctors do procedures like this every day; however, they don’t do it on me! I am hoping to sign papers on a house in a week and I have a beautiful wife that has done a great job taking care of me and 3 kids that don’t know about the new diagnosis because they are out of town for 3 weeks. It is going to be hard telling them but I know they will hear what I have to say and do their best to help me when I need it and continue to love me just as they do now.
God is good! We may not always understand what the purpose for such an event but He has a plan. The actions of one man affect that of another and there are lots of us on this place we call home. A log time ago man chose independence and with that choice a whole new world was presented to us. This is not a perfect world; it is one full of sin and consequences. There will be a day when we are truly at home, the one our Father is preparing for us. One were we will once again be pain free and live in His glory. But until that day comes I am going to pray for His guidance and keep on movin’ on and live for Him the best I know how.
Saved by the Blood,