Home from the hospital

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. Continue reading

Hating my lungs

As I sit here doing a breathing treatment, which includes the vest along with DuoNeb, Budesonide and Pulmozyme, I think how stupid all of this is.  I know it’s what I have to do but the vest makes it so hard to breathe when I already don’t feel like I can get enough air in.  Let me rewind a minute…I called my doc for a prednisone burst/taper for my severe tightness and wheezing.  I finished my taper of prednisone yesterday.  I’m not feeling better so I called back and asked for antibiotics.  I started oral Bactrim and Levaquin yesterday.  I have a CF clinic appointment on Thursday so we shall see how I am then. Continue reading

Changing IV antibiotics

I’ve been on IV’s for 13 days with no real improvement.  I called my nurse to discuss changing antibiotics since I’m not feeling any better.  We decided on IV Zoysn every 6 hours and oral Bactrim three times a day.  I usually get an upset stomach and (TMI) loose stools with these two meds so I will need to take probiotics to try and help that.  I will be on these two new antibiotics for two weeks with the hopes that I will start to feel better.  We had to look at my sensitivities from my sputum culture to figure out what drugs should work and these two were the winners.  Oh joy!

Until next time…

Chest CT results

I had a chest CT yesterday.  It showed a few new spots/infiltrates which are infection but generally speaking it is stable-ish from my last chest CT, no major changes just subtle changes.

I haven’t been feeling good for a week or more.  Mornings are the worst, as usual, but once I get moving and do my morning breathing treatment it is more tolerable in general.  I have been having my usual symptoms of an exacerbation; increased cough, increased sputum, increased fatigue, increased pain on my right side of my chest, increased over all blah feeling.

All of that means that I am the winner of IVs for the next 21 days/3 weeks!!  I will be on Colistin (IV push) every 12 hours and Zosyn (IV ball) every 6 hours.  IVs take a lot out of me so I will be worse before I’m better.  Hopefully this means I will be good to go for our busy house full over Christmas.  They are drawing fungal labs to verify if there is anything fungal could be the culprit.  I will be seeing my CF team again on December 15th.  I will be having a repeat chest x-ray a few days before that to see if there are any changes.  I’m starting the IVs tonight but will only get 1 dose of each medicine in tonight.  21 days of IVs should be December 8/9.

Until next time…