Ok so my night was uneventful and that’s ok. I took my morning dose and so far I have not grown a tail or anything like that. About 90 minutes in I had a cough, a cough unlike my normal cough. This cough was easy and it brought up a big chunk of lung junk. That was the start. I have easily coughed up about a cup of junk til now, almost 4 hours later. I did not expect it to be so easy to expel this mucous. I heard the word purge and I thought I’d be doubled over, unable to catch my breath between copious amounts of coughing, non stop. I was thinking exorcism not a gentle breeze. It’s happening in these small waves. I clear my throat and a goober comes up, I yawn and a goober is ready to be yucked out. It’s slow but gradual. The headache is back but manageable and the runny nose is fine, just weird for me as I don’t usually have a runny nose. I had it completely wrong in my head. Coughing in my world is a debilitating excruciating activity. So far I am pleasantly surprised. I expected a fight to break out in my body and so far its being very kind. I am swimming in uncharted waters at the moment. I feel lost looking to find the shore.
I have to say that I am crashing hard. This is a true mind f&*k to the enth teenth power. I’ve cried, I’ve smiled, I’m cautiously opening up my mind to this life pivot. It is very hard to think that I may actually get a break from my lifelong battle with CF. It’s too good to be true.
I have so much crap swirling in my brain, its tiring. I am feeling like I don’t deserve this gift because this drug was not meant for me. I’m trying to reckon with that. I know that I would have had access to this years ago had I had the F508del gene because the company was happy to start those of us with very low lung function on it for compassionate reasons. 25% lung function is definitely teetering on severe disease.
I haven’t been able to process this all. I really feel just completely beat down but not in a bad way, Just absolutely wiped. Mentally I’m not sure how things will go for me. My whole life Ive had to be strong and hold the line. I have no idea how to let go. No idea how to not scrape and fight for each breath. As I type this I’ve easily expelled 1/2 cup of junk easily and with no effort whatsoever. Ok I’m going to sign off til tomorrow morning. Thanks for witnessing my miracle. I hope I get that one wish of mine: to get up in the morning and pour a cup of tea and read the paper. No 4 hours of fighting before I can stop for a minute. See you on the flip side.
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