I haven't updated recently as we have just been supper busy here. I had an NIH appointment, which went well. My FEV was 82% (up from 79%)! I got all my meds refilled and had some bloodwork done. On the muscle front things seems to be getting achey again and weak; just like before. BUT I'm just taking it one day at a time!
A few weeks ago a friend of mine had a Cystic Fibrosis Fundraiser, I was a speaker. I took the time to go over a list of people with CF who had died recently and all of their ages. It's tough when you go over the list, I started crying while reading them. Only a handful were older than me. The sad fact is that the median life expectancy is 37.4 (as of 2008). I usually don't focus on that myself; but it is always in the back of my mind. When I fundraise or try to spread awareness I always add it in and make sure people know it. I want them to know what CF is, what it does and that there is NO CURE. I just want to scream it so that people will donate money to the Cystic Fibrosis Foundation. The foundation supports a lot of research in new medications to help us have a better quality of life and the chance for a cure.
I would be lying if I didn't add in that *I* want a cure. I want to see my daughter graduate and get married... I want the people with CF that I have met online to get better (although a cure would not repair damage already done), I don't want children to suffer...
I have a whole list of other things I want; but a cure, is something patients and families want too. It's what keeps our hope alive.