CF Happens

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

recent posts

  • Welp, made it 6 weeks…

    Hello all!

    I have not been feeling the greatest for the last week or so.  I gave my body until the weekend to snap back into shape.  Well, you guessed it my body didn’t get the memo.  I called my nurse to tell her that I’m not feeling good and that I thought it was time for some IVs.  I will be going to the clinic tomorrow for lung functions to get a baseline before starting IVs.  I will also be getting labs to see where they are before I start IVs.  I will start IV Cefapime and oral cipro tomorrow.  I will do labs twice a week as per the usual.  We are starting with 14 days for now since I already have an appointment scheduled for the 16th.  I will do lung functions again at that appointment with the hopes that they are improved after the 2 weeks of antibiotics.  I usually do 21 days of antibiotics but the doctor wants to make sure there is improvement after 14 days.   (more…)

  • Sinus check up

    Finally got these ol sinuses checked out. Doc says they actually look pretty good which surprised me. He said my last surgery (2001) was great and they can still see the windows (holes in the bottom of the cheek sinus that help with drainage) they put in. Although, I do have lots of junk in there. He took a culture and we will see what it grows. In the meantime, I will be starting an antibiotic/steroid spray. If the culture comes back with something other than the usual pseudomonas and/or staph we may have to change the antibiotic in the spray. So no surgery which I was actually thought was a possibility.  The spray will be mailed to me from the compound pharmacy so it will be a few days before I get it and get going.  I should be feeling better 3-5 days after starting the spray.  I guess my sinus “infection”/cold thing I have had going on for the last 2 weeks came at the right time for me seeing him.  I will see him back in a month to get checked out again.

    I put off seeing the ENT because I didn’t care for the one my CF doc preferred back in Kansas City.  If I had to guess it has been about 5 years since I have seen an ENT and that was while I was inpatient.  I had a resident doc and he was great.  I told him that I was fine seeing him but not the doc I didn’t care for.  Well guess who had to come “check the residents work?”  Yep, the one I didn’t care for.  That’s when the tears started to fall.  I was not a happy camper but I made it through.  Thus the reason I had not been seen in so long.  Fast forward to now and trying to figure out why I keep needing IVs so frequently.  The sinuses can be one of culprit.  Hopefully this helps.  I know I’m ready to have a longer break between IVs, especially since it is about to be summer and sun time!

    Until next time…