Friday, June 4, 2010

clinic and other assorted CF stuff

Four weeks. That's how long I've been out of Club Dread, and my, how time has flown. Not that I'm complaining.  In fact, I'm rather in the mood to celebrate.


Possibly because I blew the best #'s I've seen since 2006!

To be honest, it actually took me by surprise.  My sinuses have been jacked up for the past week or so and I felt like my #'s might reflect that. Happy to say I was WRONG. The docs attribute part of it to the fact that I'm finally getting my blood sugars under control.  As my body is expending less energy on keeping my sugars in check, it can spend more energy on breathing. I've also been on the Cayston for a month and I have no doubt it's also helped.

My next appointment was to participate in a CF study.  I can't remember the exact name of the study but it involved taking biopsies on tissue samples to test CFTR functioning.  The study has been ongoing because they were having problems recruiting people for the second part of the study.

I'd like to keep this family friendly but there's really no nice way to describe the procedure (flexible sigmoidoscopy), other than by saying it involves going in the out door.  Yes, the doctor will tell you "it's only 10 centimeters," but I can guarantee you that it is the longest 10 centimeters you can imagine.  Thanks the gods for Demerol and Versed. Although I can say that the whole experience wasn't that bad, there is NO WAY I would have done it without happy-I-don't-remember-anything drugs.

I'm sure you're wondering how exactly I let myself be talked into doing something like this.  It's certainly not something I volunteered for! However, the whole study happened to be headed up by one of my favorite childhood doctors and he dangled a prize in front of me that I couldn't turn down -- an AMBRY genetic test.

After spending the past six months fighting with Blue Cross about WHY I should be re-tested, it was time to go another route.  When Dr. C asked me what he could do to entice me into participating in the study, the little light bulb in my head flickered on.  I explained the problems I've been having with insurance approvals and we quickly came to an agreement that the research program would cover the costs of the genetic screening if I would participate in the study.  Too sweet of a deal to turn down, in my esteemed opinion.

Now I just have to find the patience to wait ANOTHER four weeks on the results. Argh!


Meredith said...

Glad your numbers are looking good AND that you get the AMBRY for free!

Anonymous said...

Yay for positive numbers!

That procedure does NOT sound fun. :( Hang in there!