I'm going to pitch a tent

Seriously. In the lobby of Children's, and just live there until all this craziness is resolved!! (warning: possible ranting ahead)

So I go to Children's today, per usual, hoping, hoping, hoping that I'll actually get to work. Blood draw at 8:00 in infusion, where I find out that I've been scheduled (tentatively) for a steroid infusion at noon. The steroid infusion I was not supposed to have. But whatever. I figure I'll wait and see what Dr. A says. Then CXR,as usual, looking about the same. PFTs, the same was last week, except the DLCO numbers were better, I believe. They kind of tanked last time, so at least they're better. Weight, the same. BP still a little high, heart rate OK, SATs like 96.

I see Julie, and we go over meds, talk about my symptoms, which are the same as Thursday minus the hand swelling. Dr. A comes in, and we talk. Here's the deal:

--the culture didn't grow any fungus so we can stop the aerosol med. YAY!
--We are also changing the Imuran to CellCept, another immuno-suppressant that is taken twice a day, an hour after the tac/prograf (so 9 am for me) to avoid stomach issues (which, as we all know, are something I like to avoid as much as possible). I start that drug tomorrow.
--We are doing 3 days of steroids because there was a lot of inflammation. So MTW in infusion at 1:00 (well earlier today but 1:00 every other day). Oh the joy. But I'm not taking prednisone while doing this, so maybe that will help.
--I am starting IV antibiotics--Again. This time it's the meropenum (oh the joy!) and amakacin, which involved a blood draw at 5;45 TONIGHT and another at 8:45 tomorrow morning to check drug levels so we don't screw up my kidneys. 'Cause you know, I don't need more screwed up organs. This will be at least a two week course, with the first drug being every 8 hours (Q8) and the latter being every 12 (Q12). So the joy. And I get to do them by myself mostly, so I don't have to live at home and can GO TO WORK. Because I am trying to have a life and a job, y'know. Minor consideration. GRRRR.

So I go to infusion, get the first doses of the IV drugs and the SoluMedrol (steroid). I'm there until about 2:00, go home and sleep until about 4:45, then trek out to Children's Urgent Care on Broad St. for a blood draw. I'm there 30 minutes for what should take 2. Fortunately the nurse who drew my blood (veinipuncture, of course, we can't just do the finger stick) was magic and got me on the first stab. That never happens, as we know. I finally ate dinner around 7. So, needless to say, it was a crazy day. And tomorrow, at least, I get to sleep in, get the blood draw, work for a few precious hours and then get more steroids. What fun.

Hopefully all of this will do the trick because I'm tired of all this crap!!!! Wow OK that was a lot of ranting. Sorry :) But it was a long day. And it's still not over because I have to give drugs later. Sigh. Oh well.

So that's the news from here...hopefully tomorrow's infusion will go OK.