CF Happens

Sometimes in life CF (Cystic Fibrosis) happens…pun intended

recent posts

  • CF clinic check up

    I had an appointment today to check up on how I’m feeling since doing IVs and being on Trikafta for 3 months. My lung functions are back to my baseline. My FEV1 is 36%\1.02L. Before IVs it was down to 33%. I’m feeling better thankfully.

    Now to what I’ve been asked about often, the coronavirus. We talked about it in my visit. They said to stay home as much as possible. Steer clear of over crowded places and of course hand washing and sanitize a lot. Use common sense. I was already aware this because of having CF and having to pay attention to hand washing hygiene, cover your cough, don’t go out if you are sick, avoid sick people. Yada yada yada.

    With that said I will continue to live my life but will use common sense.

    Until next time…

  • IV antibiotic time

    I have been sick since my birthday, so 2 weeks now.  I tried oral antibiotics which didn’t help.  I threw in the towel and called my nurse to get IVs started.  I had a “sick visit” today since they wanted to see me and get lung functions done.  My FEV1 was down a bit to .91L/33% (last time was 36%).  I’m having more shortness of breath, fatigue and cough.  It’s been a long 2 weeks of being sick and not feeling good.  After seeing the doctor I went to the infusion lab and got my port accessed and had labs drawn.  Now I’m just waiting for meds to be delivered so I can get started.  I’ll be on IV Zosyn every 6 hours for 2 weeks.  Hopefully 2 weeks is all I need.  I think that’s all.

    Until next time…