Friday, January 29, 2016

3 Months on Orkambi

**Orkambi update** 

"On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through the bad days so far is 100% and that’s pretty good.” 

I did it!! I made it to the 3 month mark on the full dose of Orkambi! Phew... This med has been really tough but I think I am finally seeing side effects subside. Really the only thing I still experience is that dang shortness of breath and my right lung is still having this random popping pain. Everyone that I have spoken to that is on Orkambi has said after 3 months they started to see side effects subside and some positive results. So I'm hoping that is the case. I have been having some really good days where I don't have and side effects, and then of course I tend to over do it on those days and then I need a couple days to recover. I can always tell when I over do it because that is when that pain in my lung is the most painful. So looking for a way to balance it all out.... Baby steps!! 

I think it's still really hard to tell any changes maybe because they are all happening gradually. This last week I have been getting out mucus plugs from my lungs, which is HUGE! They are basically petrified mucus plugs dark and harder than a rock. Who knows how long those have been down there?! Of course I took photos and if you didn't get a text from me of my petrified mucus that was the size of a watermelon seed well, you're welcome. ; ) Ha ha. So fascinating and definitely worth celebrating!! Definitely a great step in the right direction. 

My next appointment is in March and I'm very hopeful things will be great. I'm excited to see what I will blow, but don't want to focus on the numbers too much. I'm just focusing on each breath I breathe, how I feel and how far I've come rather than how far I have left to go... Literally one day at a time! 
Breathe out Love! Xo❤️


Inhaling Hope said...

I am so glad you are seeing some baby step improvements. Around 4 months I started coughing plugs several times a week. I must have coughed over 40 plugs by now which is crazy! I usually can get 6 at best during an intense round of IVs or steroids so it is strange to get so many while NOT of IVs or steroids. I hope you have a great appointment in March.

Brad said...

I hope you are doing better :)