My Moments to Breathe

Thursday, January 24, 2013

No that big of a thing

Ok so I was going to totally ignore this one but I guess I can't because of facebook.

Tomorrow I am off to Madison for another little tune up. I spent the day at the doctors yesterday trying to figure out what was the best next move for my health (but shhh don't tell anyone but I stopped for a sandwich and shake on the way home....). My lung function went down to a 22%, I just smiled and told my doctor that it wasn't a very pretty number. EEPS a lungs only work 22 out of 100. Sounds pretty scary. But he was very amazed that I still am not oxygen dependent. Well, do you know me very well, I am very stubborn when it comes to certain things. And walking with oxygen is like the last thing I really wanna do until its literally life or death. Good news is he told me that I should do pretty well post transplant. Yeap I said that word without as much cringe today. 

Talking to my actual doctor helped my fears for the next few months, If I work hard in my pulm rehab, trying gaining 6 lbs and just keep up with my meds I more likely will get a good grade on my eval. And he also told me that he will fight for a few people if and I am pretty sure he wouldn't say that if he wouldn't be willing to do so for me. Sigh of relief. Now just to get my butt in gear.

I did make the smart choice to hit this infection with the hard stuff vs trying another band-aid in hopes it could work. No this wasn't an easy decision ad it never will be. But oh those 2 weeks that I felt really well was like a little slice of heaven. I could laugh and sleep and play with Lai and clean and do whatever without having to sit for 30 min or whatever. Again this is part of my stubbornness that will help in the long run (but maybe not so much right now!)

I am still trying to learn my boundaries on what I can and can not do without getting sick. If I know something huge is coming up, so I relax the few days before and few days biggie right!! Just need to remember that. Guess I can't be too spontaneous anymore, but that will help for the time before transplant. Breathing is more important.

I told Laila today and she of course has been pretty bummed, but I she will be alright. And its awesome because I am pretty sure this trip is only for a few days and then home for the rest of the treatment. That way my little leading lady can have some what of a normal life. (Yes, guilt still comes very high when it comes to her life being normal!!)

Well, I have a TON of stuff to do before I go in tomorrow and really want to be able to spend tonight as a normal family. More from my comfy bed in Madison!!

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