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

Clinic appointment

I have been really short of breath and coughing more so I made an appointment with CF clinic.  Today was the day.  I did lung functions and they were actually up since I was last seen in November.  My FEV1 was 37%/1.05L.  I decided to do IVs in hopes of that I caught whatever this is before it got bad.  I will be on cefapime every 8 hours and amikacin every 24 hours and have labs twice a week.  I have a follow up appointment on February 7th.

Until next time…

Life update

Hello all!  It’s been a little bit since I updated.  I have had a hard time with switching antidepressants BUT I’m finally starting to feel like myself again.  I still have some work to do but I’m getting there.  Like I said in the last post I kind of regretted stopping the Effexor, well I’m back on it.  The other meds just weren’t cutting it so I asked to be put back on the Effexor.  It’s been 4 weeks and I’m finally feeling decent.  I have lost weight from changing antidepressants.  My appetite hasn’t been the best but it’s getting better. Continue reading

Quick clinic update

I had CF clinic today to follow up from when I was on IVs.  My lung functions were up a little to 30% / .87L FEV1.  We talked about this range being my new normal (baseline) for lung functions.  Thanks virus, thanks a lot.  I shared with him what was done at Barnes for my transplant appointment, some of which he already knew.  I also received some clarification about my care with them post transplant and pre transplant while I am in Missouri.  They will be able to help me when in MO if needed and post transplant I will still see them a few times a year for other CF care on top of lung functions when Barnes wants them so I don’t have to drive the 8 hours for some parts of the regular check ups. Continue reading

Clinic appointment today

After 3 weeks of antibiotics, I am not all the way better.  I still have an annoying cough that wakes me at night.  I cough so hard that I see stars and almost see black…not cool.  Today’s appointment went as follows:  Vitals (all good,  O2 was 96 on 2L), My lung function was FEV1 of 38% / 1.08L which is still stable.  Stable is good when it comes to lung functions. Continue reading

Life update

I had a CF clinic check up yesterday and all is good.  My lung functions are up 3% to 36% from 33%.  They said I sounded good and looked good.  My BMI is great at 24, yes I have some extra weight to help fight off infection.  When I’m sick I can lose weight fast because your body takes the calories you take in to fight off infection.  Not that I feel comfortable with the extra weight but everyone says, “you look so good,” so I’ll take it I guess.  If the extra weight helps me stay “healthy” (whatever that is) I try to deal with it the best I can. Continue reading

Impromptu CF clinic appointment

I haven’t been feeling the greatest for over a week.  I’ve had an increased cough along with increased sputum (what I cough out in case you don’t know what that is).  I have been having trouble sleeping.  I also have been more worn out and more short of breath and needing to use my oxygen more often.  I called my CF nurse to ask for IVs and I got an appointment with the doctor instead.   Continue reading