Yesterday I went back to UAB ... on the schedule, a CT scan and another appointment with ENT.
The verdict? CT Scan was a hot mess. It's about what Dr. W. expected ... scar tissue and polyps. I'm going to start the Pulmicort flushes and he is going to try and revise some of the scar tissue in the office on March 9th. Not that I'm looking forward to having him dig around in my head for a few hours (it will be numbed with Pentacaine, which is like a super-duper Lidocaine), but it's better than going back to the OR. Anesthesia does not make the lungs happy.
I did not sign up for this.
In other news, I talked to C.Fred about starting Cayston. She said there is still a study ongoing at UAB that I can possibly participate in. Meaning that I won't have to wait for the actual release (even though that is only about two weeks away). Yay! I am more than willing to try ANYTHING that may keep me away from Club Med.
Still trying to appeal BCBS's denial of being genotyped. I did find out that my company has no specific exclusions for genotyping, so it is simply a matter of convincing the insurance company that being genotyped is important for all CF patients ... it's value is not just in diagnostic or pre-pregnancy / newborn screening.
But, hey, if all I need to do is tell them that I'm thinking about getting knocked up, then it might be worth it. Just jokes.
How Things Are
4 days ago