This happened yesterday!!! Just now getting it posted on my website.
LUNG FUNCTION 94% up from 73% …..a 21% increase!!!!!!
I haven’t seen the 90s in over 5yrs!!!!!!
God bless Trikafta!!!!
Full clinic update later!!!
Posted this yesterday. Just took a little longer than expected to upload to YouTube
This is what happens when you are having GI issues……an unfinished bag of nutrition and calories lost. FML
Also waking up at 3am feeling overly full and like I’m gonna puke!
Still waiting on a call back from the GI specialist about an appointment. Possible Gastroparesis. This would explain the last few years of symptoms and issues that I thought were my normal digestive problems and having a shit appetite.
Lots of good news to report! Check it out.
My update from this morning about Day 4 of homecare IV meds, Life and more
Supplies came FINALLY!! I will do a full update and info blog tomorrow about how everything is done. I wanted to do my dressing change video but it’s too late and I was over my initial 24hrs!!! It will need done in 7 days. So not this last time I was on homecare but the time before when we still lived in the city and I had my final fuck this moment, I taught David (my husband) how to do it when it needed fixed! I allow him to do it for numerous reasons:
- As stated above, my experience with home nurses and their inability to properly change and place a new dressing is beyond my patience level at this point in my life. Too many horror stories or needing to redo it immediately after because they don’t listen than I care to count.
- He has been tattooing for over 25yrs. He’s blood born pathogen certified and because of that he understands the IMPORTANCE of needing things to be and remain sterile.
- I haven’t found anything this man cannot do! Having had so my picc lines, I could do it myself if it truly came down to it. So I knew explaining things step by step through the entire process he could handle it and I trust him with my life.
I now have a fresh clean dressing and I can start my meds at 11pm. Yes I am still in pain but I am managing it, sorta. See everyone tomorrow morning for a full update. 💜
I’ve educated people and spoken about what CF is many times as a kid through adulthood, and still do. This was my first official event that wasn’t mine speaking about what it’s like Living with CF 4yrs ago this week. I’m very proud of this speech.