• Today was CF clinic day. I am seen every 3 months, so today was a regular check up. However, I have been wheezing more so it was good timing. They had me do my lung functions at home on my home spirometer. My FEV1 was 35% which is my baseline (average). If you are new here the 35% FEV1 means I am using 35% of my lungs to breath. Most healthy people are 100% or more. They checked all my vitals and they were all good except that I had gained some more weight. Usually that would be a good thing for a CFer but I have gained quite a bit over the last 2 years since starting the new CF drug Trikafta. So basically they aren’t concerned with my weight but I am. The extra weight doesn’t make my breathing any easier that’s for sure.

    We spoke about all my meds and what changes we could make, if any to change. They are going to try and up my inhaled steroid Budesonide (Pulmicort) in hopes that it will help with my wheezing. I have been wheezing a lot and getting out of breath easily with activity. My oxygen sats are fine so oxygen is not the answer. I am thinking it is a combo of the extra weight and the weather changing. The season changes mess with me every time.

    They drew labs while I was there to check my thyroid, iron and vitamin levels to see if any of that could be contributing to why I’m always tired and sleep a lot. They decided to do an oral antibiotic, Augmentin, for 2 weeks and a prednisone taper over a 10 days. Hoping that combo helps with my wheezing and rattling in my chest. I see them back in December for another 3 month check up.

    Until next time…

  • My clinic RT (respiratory therapist) told me to send in lung functions once we got moved and settled. I did and they were down to 31% on my home spirometer, from 35% in clinic on the 10th. The nurse practitioner said I sounded wheezy when she listened to me at my clinic appointment on the 10th. I held off on starting prednisone hoping the wheeze would go away. Well after the move the wheeziness and chest tightness didn’t get any better. My nurse called me to ask if I wanted to start prednisone after she saw my lung functions and I said not yet. Yes I’m stubborn. haha. I waited a few days and called her back to take her up on her offer. I did a 60mg burst for day one and then 20mg everyday for a week. Tomorrow is my last dose thankfully. Prednisone is great for opening up the lungs among other things but not so nice on the mood. I try to be on my best behavior when I’m on it. haha. I am not wheezy and tight anymore, for the most part. I mean I still have crappy lungs so there’s that. That’s about it for now

    Until next time…