Thursday, February 5, 2009

Home again Home again... jiggity jig.

So while I was forcfully removed from my normal living exsistance I wrote up a little journal with the intention of boring you to tears with it. I can't bring myself to torture you like that. Arn't you glad!

So you'll get the foot note version.

Into hospital with a lung capasity of .75L.
Out of hospital with a lung capasity of 1.46L. That put me at 39% of normal or right below the "can live a normal life" line. The good thing is that is without a breathing treatment. We are guessing that I will range in the 41-45% with treatment. 40% is normal living.

Into the hospital with so many infections they couldn't figure out where to start.
Out of the hospital with one that I will have forever and will be on the treatment every 28 days to control.

Out of the hospital with less drugs or regiemes than I figured. They are varied but not un-doable.

Home from the hospital on room air! Oxygen only at night and to excercise.

Home from hospital on Jan 30, only to relapse BADLY on Jan 31. A few frantic phone calls and my DR said if in 6 hours I wasn't markedly improved I was to go to the ER and make them call him, he was afraid on the trip home I had popped an air sac and was leaking air into my chest cavity.

New meds for over the weekend and rest rest rest.

Today Feb. 5th is the first almost normal day I've had since I got home. I have a all the meds in from shipments that I was waiting on. My new vest arrived today (you ever want to try it AD you can come anytime, it's rockin'
for airway clearance). I did say I would never own one of these rotten things, but I have 30 days to decide if it's helping or not.

I'm not sure how long it will be until I'm up and ready to work full time. Right now we are schedualling everything for weekends so Bill can cover me without having to reschedual people if for some reason I can't do it.

The ups and downs are daily right now. I'm sure soon they will be weekly then hopfully monthly then maybe yearly.

I'm schedualed for a 3 month check up in SF. After that we'll determine a longer term medication plan, meaning we may actually peal off more of these drugs (thank god, we're at $6000 a month now), and we'll plan farther out checkups. Blessedly though my nurse is only a phone call away and she ANSWERS her phone. *Gasp*

My dad and I are debating whether we should buy our own plane, invest in cal-or, or write it off as "will never happen again". Between us the flight people have gotten 60K in the last year.