This past October Shawn was put on O2, in Dec he was in the hospital for 2 wks then home for 2 wks of IV meds. In January we met w/ Dr. S @ MGH. Our first CF doctor. In February Shawn was admitted to MGH w/ an FEV1 of 18%, and weighing 134lbs. Cf had finally caught up with him.
All of the things I had tried to do to help him had backfired. I feel largely responsible for his decline.
We have been led to believe that adult CF'ers were rare and the ones that were around were only around because of medical/pharmaceutical/surgical interventions.
I believe that is in part true but I believe it is the fact that CF'ers as adults can seek out information, question their doctors, make suggestion, ie: take an active part in their own plan of care, that truly is of benefit to them.
In March we signed up for Internet service. I suddenly have a plethora of information/research at my fingertips.
When I relay information to my husbands doctors,PT's, nutritionists etc that I have discovered through an adult CF'er I've met on the Internet the info is immediately dismissed. Quackery.
I often feel like it is us against them.
I finally feel that I am not the only one who questions the "authority".
Rest in Peace Aunt Marybeth
1 year ago