So, I believe it was about 6 days after the tx, that I moved down to 6AW, aka "The Heart Center," where they were temporarily stashing all the tx patients until we got our own floor. The Heart Center had all the special monitors we needed and huge rooms (which were great)...I'm talking a room the size of a college dorm room. I had a mini-fridge, two big cushy chairs (dad loved that), and the rest of the normal hospital stuff. The reason they're so big is because they used to be double and triple rooms, back in the day, but now they were mostly singles. At least all the tx rooms are singles, because you don't want any germs after transplant. Everyone had to put a mask on and nurses and such had to gown up. Everyone looked really, really good. :) (lol)
So once I was down there, I thought "all right, here we go, just gonna kind of hang out." Oh, wrong. SOOO wrong. Not even close to being right in any estimation. No way. This was high-intensity boot camp, kids.
My days usually began at 6:00 a.m. Yes, 6 a.m. Now I am not a morning girl. Never have been. So this was not fun. At all. Especially since we were just taking a trip down to radiology. For like the first day or so I got rides down. But PT started immediately, so then I had to walk.
Let me explain why this was an issue. After transplant, just sitting up is a big accomplishment. Your chest feels so heavy that it's weird. For me it wasn't painful, it was just a lot of pressure. So then you try standing up. And walking isn't even walking, it's more shuffling along. Now I will give them props and say I didn't totally walk down unescorted (i mean, without someone even brining a chair) for two weeks or so. It was a awhile. But it wasn't a lot of fun. especially at 6 a.m., when I'm thinking, 'um radiology is open all day . Why do we need an x-ray at 6:00!?' (especially since Dr. Astor won't even be in to see me until 11????) But there was no room for discussion.
So every morning, CXR. Then the nurses would be magnaminous and usually let me get back in bed until the breakfast trays came. Getting into bed wasn't real graceful, it was more like flopping into bed. But I wasn't going for style points here.
Karen, after a day or so (if I even got that long of a grace period) taped a schedule to the bathroom door that I had to follow quite rigorously. It was like law. It included fun things like:
--Sit in chair after breakfast
--PT at 11 (which includede various things)
--Walking around the wonderfully landscaped 6AE four times a day with some unwilling victim. :) (Usually Karen, another nurse, PT, or Rita....yay!)
--do some crazy breathing treament
--have RT come up to do PT...even though I didn't technically have CF anymore they still wanted the chance to beat on me. :)
--more sitting up!
--eating...lots of eating
--and the best part....massage therapy, woohoo!!! Because your joints and muscles get really, really cranky.
Kathy, my psych, would come most days, as would Dr. M and Teri (who even brough us Cosi food! Yay!), and Fr. Mark, bien sur . So it was good times....um, some of the time. But it was very, very regimented. I was totally not used to that, because on the CF floor, when you're admitted, you just kind of lay there because you really can't do anything else. Sleeping is a big part of the day. Thankfully I was allowed to nap in the afternoons!