27 Years, 4 Months, 14 Days

. . . and counting.

Okay so I'm not going home today. The doctor (who happens to be my doctor's fraternal twin sister and another pulmonologist at this hospital) came to see me pretty early this morning. I had just woken up and had yet to do xopenex or my first airway clearance, so needless to say my O2 sats probably weren't as high as they could have been. I was really hoping to break out today, but honestly I guess one more day might actually be in my best interest (cringe).

I did get to leave my room for a walk today. Because of the whole CF = contact isolation thing, I'm not allowed to leave my room alone. But the PT came and actually had time to stay and take me for a walk after my CPT, so that was HUGE. Getting out of the room was totally key to my sanity, and getting back into some sort of exercise routine as fast as possible is definitely key to my O2 saturations coming back up. I begged the PT to get me an exercise bike if possible, but at the very least she left instructions with the nurse's station that I was to be allowed to take walks on the ward as long as I gowned first and took proper hand washing precautions. So I guess I'm about as free as anyone ever is on lock-up isolation.

So yeah, the walk. We did a solid 15 minutes at a nice brisk pace. I would have liked to go longer, but she had to leave (and she said SHE was tired, lol). I was just so damn happy to be moving I feel like I could have gone for miles! We did bring the portable O2 tank, and she started me out on 2 liters because we had just done CPT and so I was already a little "warmed up", so to speak. After a couple of laps, my O2 was at 90 and occasionally 89. So she cranked it up to 3.5 liters and we kept going. Well, I felt great, I was moving fast AND talking the whole time, but my O2 stayed exactly the same. Finally, it dropped to 88 after 6 laps or so and she insisted we stop for a sec to rest. So we did, and she looks down at the tank, and suddenly she covers her mouth with her hand and gasps. Turns out she had connected the tubing to the WRONG nozzle -- it was actually connected to the one they use to drain the tank. So I had been statting at 90-89 for 6 laps, while talking, at a pace she had already called "impressive" on room air! I was definitely pleased, and she made a big note of that on her little recording sheet. Then she turned it on for real at 1 liter and we went for another 5 laps with my O2 at 92. Woo-hoo!

She told me I could go out sans O2 for my afternoon walk(s) but that I had to promise to pace myself and stop after 5 laps max. She couldn't leave me a pulseox so obviously I'll play by the rules since I can't self-monitor. No sense pushing it too hard, and again - my new goal is to be aggressive AND know my limits. I'm naturally kind of a stubborn little brat (or another word starting with B . . .) so I think I need to start recognizing the difference between good pushing and bad pushing. And I appreciate the offers for a good kick in the ass from some of you, but you know, it's tough sometimes.

I miss my puppy. I want to go home. Above all, I am one DIRTY little cystic right now (yesterday I had salt crystals fall out of my hair from all the sweat coupled with the no showering rule). I still hate IVs and I still feel frustrated beyond belief that I got sick again so soon and that my sats are taking so long to bounce back. None of that has changed. But I guess you learn to see victories wherever they start to hide after a while. Kind of a "one small step for Piper, one gigantic step for Piper's lungs" type of thing.

It just so happens those steps are on the 9th floor of Columbia Presbyterian Hospital for now. Sigh.