Trikafta- Two Weeks and a Life Change

It has been a wild and crazy ride. 14 days ago I was struggling with everything. My breathing, exercising, my sinuses, my night feeds, my insulin needs, all of it. that was normal. That was all I knew until that fateful day, my Re-Birthday, October 18, 2021.

As many of you know this drug has transformed me into a person I don’t remember being. I don’t remember being well and therefore this is all very new to me. I am still in shock that I am doing so well and in fact getting better. According to my small spirometer I have at home yo measure my lung function, I have doubled my fev1- the important number that determines lung damage. If that translates correctly my fev1 could possibly be 50%. This is absolutely highly unlikely but there will be a significant improvement at my clinic in 3 weeks. I look forward to seeing it on paper. Although, if that number was not so great, I would not care because its how I feel that matters.

The most significant change for me has been the increased lung function and the lack of coughing. All the things I did before that would make me cough like laughing, sneezing, talking, walking, or even just standing does not cause me to cough. Once in awhile I’ll have to clear my throat and its from a more liquidy type spit versus mucous. It feels so normal now that I feel like I should be more shocked about it. I realize that I am just getting back what should have been there anyway.

There has been a lot of pain as my body changes at the cellular level and I knew that was going to be the case. As of today I feel pretty good. I am getting more fatigued because I am doing so much stuff so much faster. My pace has tripled. I get mad because I’m carrying a load of laundry up the stairs with no oxygen and I feel gassed but thats because my body isn’t used to this shift. I am really trying to give myself a break but the more I push the more I want to do.

I have so much more to say but really am so tired. My heart is full and now so are my lungs! I am so blessed and can’t wait for my life to re-start. I have a lot of firsts ahead of me. Thank you for supporting me through all this. I so appreciate your comments and likes. You’ve seen me struggle my entire life and now you get to witness a miracle and see me actually live. The little things are all that matter. The deep breath, the quick chat with the neighbour, the long walk with the dog, the folded laundry, a pulse oximeter measuring the amount of oxygen in my blood that hit 95 on room air only(usually sat at 91-which is bad!), the simple act of sitting to watch the sunset. The biggest things in life are not things. I am grateful for it all.

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