Strange things, mystifying...

(points if you know what the title is quoting!)


That just about sums up today's clinic appt. It was like the battle of dueling data.
First: blood. OK
Second: CXR. OK.
Third: PFTs. Um, not so much. First the NiOx, which, as we know, measures inflammation in the lungs. I am usually around 7-10. Today I was 23! So that was odd. Then PFTs--50%. They were, um 56% last week. What's going on there? The "Box" test was fine, and the DLCO (aka "Evil Cleveland Clinic test") was up. So we had two sets of sucky data and two sets of good data. Hmmmmm.
Fourth: Amakacin level blood draw. Guy got it on the first poke. He is good. :)
Fifth: Six minute walk with Whitney one of the great PT kids. She's the one who runs the Pulmonary Rehab program. My sats were fine, but my heart rate was high.

So we talk to Dr. A. He doesn't change anything. I think it may be more inflammation and we just have to deal with that. So, with these weird numbers, I was dismissed and am coming back on Tuesday. I finish the IV course on Monday (yay!) and then...Tuesday...we'll see!! Hopefully it's all good news...