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I'm very sorry to hear about your friend. This is a very complicated disease, and as I said, my first symptoms were with my pancreas, though since then, I've now developed emphysema. I certainly wish him luck with his transplant. At 31, he's very young and has a lot of living to do!
Just as you pointed out, any time I even begin to think "why me," I'm stopped in my tracks before I even finish the thought because I think of people like your friend and particularly all the babies and young children who have either died of this disease or are now living their lives while fighting for every breath.
As far as "beating the odds," you're right. I was born with this disease but didn't know it until my mid 50s. I am getting sicker and unfortunately may wind up in the hospital before this week ends, but if I die tomorrow, I will have had the opportunity to have lived my life.
The main purpose of my post was to let everyone know that this isn't just a disease of babies and children. Although your friend spent a long time being misdiagnosed by the "experts," I truly believe there are many others out there who have this disease and don't know it, particularly once they reach their 50s. I just want everyone to know that it can be diagnosed at any age, and as you so eloquently pointed out, the "experts" often miss this diagnosis, so patients should be proactive, and if they develop chronic pulmonary or GI problems out of nowhere that are deemed "idiopathic," they should keep the possibility CF in the backs of their minds, just in case.
Thank you for your post, and  right back atcha!!!  |
Please see post. - Marmann
