My Moments to Breathe

Thursday, January 30, 2014

Day by day

I still haven't been able to get a good night sleep and we are guessing most of it has to do with anxiety. I guess I need to get rid of things that cause least the things I can control. That will be my main goal this week.

I had a doctors appointment on Tuesday to follow up with my cold, just to make sure everything was OK and that it wasn't anything else. I still weigh only about 89 lbs, but slowly trying to learn how to eat and be OK with eating and correcting later. Medically induced things are crazy....def harder to control. But still gives me hope that once I figure it out more I can make it stable. Then with a good diet and exercise things will all work out. 

My chest X-ray looked great and the bronch from the other week didn't show anything except that I had a cold. They knew I had a cold before I did.. Wish I had the warning HAHA! 

My 6 minute walk went well, kept an 02 level of 97%, but once I took my mask off it jumped straight up to a 100% in literally 1 minute. Thats an awesome number to see and honestly it never gets old. The other number that rocked and made me pretty much cry (happy tears) was from my PFTS. My lungs are now functioning at 84%. You need me to say that again?! 84%.


And thats with a cold and only 2 months out. I just wanted to squeeze my lungs and donor family so badly. Thanks for this new look on life....well, really, just thanks for life.
Its crazy and I really just can't wrap my little anxiety ridden brain around that fully...not yet at least.

I did get an antibiotic just in case there was something in my sinus (they took a culture) and just to make sure whats in my chest doesn't settle and turn into anything else. To keep my shiny new lungs as shiny as when I first got them. So I have been doing my PEP, exercise, and just doing some deep breathes.

I am starting to feel pretty good and the chest area seems to be getting a bit better...all of it. I know that some of you have seen the site and how crazy it looks. Well, it is all healing very well and the nerves are growing back...which causes discomfort and my ability to wear certain shirts cringe worthingly impossible. So I have been pretty much living in the same few outfits, depending on what area the nerves are growing back in. But I can rock them with some good nail polish, hair style, and accessories. 

I also am starting a desensitization to sulfa drugs this week. THIS. IS. WEIRD. All my life I have been told and only known to stick away from these drugs. And now I am going to willingly put them in my body slowly and hope that I don't react to them. Fingers crossed and prayers sent please. In this process I was also told that if it works I am not able to ever...let me type that again...EVER....miss a day or my immune system will freak out and never ever accept the drug again. I mean I know that I am already on a good routine of other meds that can't be skipped, but those are ones too that my body won't let me take is for some reason I skipped a dose for the day. Hmmm, doesn't that sound like a good reason to have stress therefore some anxiety? Add it to the list of musts...kick another anxiety out that I can control. 

But even with all that I am so glad to be able to breathe easier and know in a year I will look back at this journey and my scar and know it is out of love that I did it all. The pain with numb. The memory of the pain will numb.

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