Friday, August 5, 2011

Monday's Appointment

I had an appointment with my regular CF team on Monday. Since I was feeling so good, I figured it would be a short appointment. Boy, was I wrong. I might have been feeling good but the other CFers at clinic weren't. The team had to deal with them before getting to me. My PFTs are up. Not where I want them (I prefer at least 60%, I'm at about 29%).

Not much change in my weight so I'm going to have to start drinking shakes. Unfortunately, my insurance won't cover the one my doctor wants (Scandishakes). The shakes my insurance will approve makes me sick, so we're going to see if my insurance will approve a different shake that's not as pricey as Scandishake. If I could I would just pay for the Scandishakes myself. I've had them before without any problems. The state doesn't provide me with enough funds to be paying out of pocket for them. So I'm waiting to see if I'll get the other stuff.

We still have no clue as to why I feel exhausted by midday. I sleep eight to nine hours at night and still need an hour nap in the afternoon. The doctor wants me to get a CT scan. Basically, trying to see what else we can do since I'm "too healthy" to be put on the list. He also said that my sugars plummeting is probably a sign of my pancreas giving out. The doctor thinks that my pancreas isn't making glucagon anymore. So now I have to do more snacking to keep my sugars level. This CF business is hard work.

A good note. My sinuses had been swelling up pretty badly and causing me some severe pain. So my doctor recommended I try taking Ibuprofen each day to reduce the swelling. Well, it worked (woot, woot) and I noticed that I was in a lot less pain in general. My back isn't spazzing, my knees don't hurt, and my hands aren't locking up. So I asked him about taking some ibuprofen every day and my doctor said I could as long as it didn't upset my stomach. He gave me a maximum to not surpass. So now I'm taking a small amount of ibuprofen each morning and I am able to be more active throughout the day.  I'll see in a couple of months how I'm feeling.

So an appointment that should have lasted an hour, lasted for three hours. I was starving by the time I left. I think I should start packing a lunch for these appointments.