Antoher visit to Shangri-la...

Oh what joy was mine this morning to wake up at 5:45, to rain and dark, and to drive to Children's in the rain! Woohoo! My appointment wasn't until 7:30, but we were there at 7:00, whereas Infusion Clinic (where I get blood drawn) didn't open until 7:20. So the joy. Valerie was my nurse today, and we did the normal blood draws, which took us to about 7:45, then Mom did the 8 AM meds and I took my 8 am prograf. That's when Polly, Dr. A's AA, found us, and chatted with us for awhile, since we didn't have anywhere else to go and the clinic was empty. She is awesome. :) After we were done she took mom over to the office for a "tour" while I did PFTs with Kathy and Marita in the pulmonary lab. The numbers are up very, very slightly--like one point each--but the DLCO (the test that measures gas diffusions) was a lot better than Monday. The test that measures another type of chemical, and thus lung inflammation, was also up slightly, to 8.8., but as long as it's under 30 we're all happy. :)

Five of us transplant kids were there today, so it was a bit of a madhouse, since Dr. A wanted to see us before Christmas. So it was a looong wait. Our appointment was at 9:00, and Julie had seen us by then to do the normal run-down of drugs and symptoms. I mentioned that I was still having shaky days, and she said that was probably a combination of the increased Vfend (an antibiotic no one has ever heard of, but I'm on sort of permanently) dose, which messes with the tac drug level, so it can make you shaky. I think it might also have to do with some of the BSL issues we've been having, but that's just me. I've also been having trouble sleeping and some general achiness, but they're not too worried about that.

Finally, at like 10 something, Dr. A came in and we went over the chart and such. He is still hearing "crackles" in the bases, but my cough has gotten a lot better and my PFTs are sloooooowly coming up. He says it's just taking awhile for me to get better. We're still doing the IVs through Christmas morning and the twice a day inhaled drug through Saturday, and then we'll switch to once a day. We also messed with the tac dose again. Then he wanted a CXR, so we had to do that and then wait for him to look at it before we could go. All in all, we left Children's around noon. Not the way I wanted to spend 6 hours of my day, but whatever.

Other than that, things are going OK. I was able to baby-sit tonight which was a lot of fun and I'm going out to lunch with them tomorrow, as well as attending Branden's annual Christmas shindig. I will post pictures when I get a chance.