Having your lungs fail feels like taking breaths, breathing, but having your body forget what it has always has known to do.
Suddenly, what has always been instinctual becomes work, and all the work you do does not do anything.
Your basic bodily instincts no longer work, and in your desperation you just hope and pray that your own determination will somehow makeup the difference.
You force your body to do the mechanical actions. You have to think and concentrate on taking breaths in and out, in and out, and even with all your efforts trying to survive, those breaths fail to work.
There is no guarantee that your lungs will receive the air you so desperately want. Breathing is so much more than taking a breath. It’s a dynamic, physiological process that requires the breath to be accepted and processed by your lungs, allowing the oxygen to diffuse into your blood.
It’s like taking a breath and breathing in half way, never, ever being able to attain that second deeper breath of oxygen that actually allows you to function.
It’s possible to survive, but it’s not possible to live.
There Is a difference.
It should come as no surprise that I’ve been pretty motivated to fix these problems since my biopsy in October where I ended up begging for pain control, home oxygen, and a heme consult from a soon-to-be surgeon that just didn’t get my problems had nothing to do with his incision, and that despite this fact, my problems were very, very real.
So why does my doctor finally decide to sit me down and announce my graft vs. host disease and it’s symptoms are life threatening yesterday.
No sir, my GVHD was not threatening my life yesterday. It has been threatening it for months. By yesterday I finally had gotten around to coping with this fact and moving on.
Luckily, today I've finally gotten some singulair on top of my zithromax, and hopefully, a nebulizer for my aerosolized steroids on it's way.
I also have an extra $90 in co-payments to front each month.
There is a simple way to erase this extreme payment, and that would be to admit I have severe, systemic GVHD and take some prednisone.
However, I would lose the graft vs. host anti-cancer benefit by doing this.
My choice, essentially, is which disease I would rather fight.
I am voting to fight my graft vs. host disease.
I've always been morbidly interested in GVHD. I feel I am sufficiently educated in it's symptoms to, at the very least, know when it's about to kill me and have some decision making capacity regarding its control.
This route is more complicated and requires more monitoring.
I'm willing to take my chances with the GVHD over the chemotherapy.