Saturday, February 18, 2012

A not so great week

A simple cold, well a nasty simple cold kind of ruined my week. I have been sailing along here for a few months doing/feeling well and loving every minute of it. I started out with a firey sore throat early Last Sunday morning. Then stuffiness set in. And then on Tuesday morning, I had eye surgery to remove a cataract, which was caused by so much steroid use, they thought. Since I didn't have a fever, it was a go. Lots of eye drops a few days before, day of, and lots after for the next month. I was awake, but very relaxed, didn't care, and saw pretty colors during. That's what I remember...pretty kalaidoscopy colors. I've had LASIK surgery several years ago...it was somewhat like that afterwards, scratchy and blurry. But with a bad cold on top of that, it was kinda miserable. Today I'm feeling much better overall, and my eyes have quit watering, my nose has quit tickling, and I've stopped sneezing all the time. The miracle is that the cold didn't go to my chest! At least so far!

I started my second round of Cayston on Jan. 31, so I'm finished with my third week. Yesterday I received an email from the CF Research, Inc that there is presently a shortage of Cayston right now, although if you're already on it, they will keep providing it if at all possible.

Here's some pretty great news though...
There has been a new drug released by the FDA a few weeks ago called Kalydeco, (kuh-LYE-deh-co) which is VERY good news for some people with a certain cystic fibrosis gene called G551D. This oral drug is the first one developed that treats the underlying cause of the disease, not just the symptoms. You can read more about it HERE. This will help about 4% of the CF population. One of my genes is Delta F508 (the most common CF gene) and there is currently research being done for that. Kalydeco is definately major progress in the right direction!