I got home from the hospital on Tuesday afternoon.  It was a long week in lock up.  I survived though.  I have major steroid brain after having a lot of IV solumedrol steroid (80mg a day) while inpatient.  I am now tapering down from 60mg prednisone, a long taper.  I’m so fuzzy, scatterbrained, antsy and swollen feeling…so annoying.  I’m having a hard time even focusing on this post, I’m trying not to be all over the place…haha.

I’m on 2 IV antibiotics, Avycaz every 8 hours which takes 2 hours to infuse via gravity flow and Colistin IV push over a few minutes every 12 hours.  We have to keep an eye on my kidney (creatinine) levels with the colistin because last time it made my level go up significantly so I am getting labs twice a week.  I had labs today so we shall see.  I’m also on 2 oral antibiotics, Bactrim 3 times a day and Minocycline twice a day.  I am loaded up to say the least.  I am also having bowel issues, as in I’m not going.  You would think that I would be going too much with all the antibiotics but I’m not.  So I’m also taking miralax to help with that part.  My oxygen sats have been running in the upper 80’s on room air and mid to low 90’s on 3 liters.  I’m a mess to say the least.

Now emotionally I am kind of all over the place.  I’m very frustrated with my body not cooperating and rebelling.  It is very scary not being able to breathe and I was there when I went to the ER last Tuesday.  I couldn’t catch my breath.  I felt so tight that it felt like I couldn’t get enough air in.  I, of course, was getting air in because I was breathing but it was shallow.  I’m breathing better than I was thankfully but with my belly being full that doesn’t help my breathing.

I have labs next Monday and Thursday along with CF clinic on Thursday.  I will do lung functions at clinic.  I’m hoping they are back in the 30’s at least.  It would be great if they were back to my baseline but I’m not holding my breath on that one  hahaha.

Until next time…