Clinic day/follow up from hospital

Today was CF clinic day.  It was my normal 3 month check up that turned into a hospital/IV follow up.  It seems to happen that way most of the time.  I have dropped the prednisone weight I gained which I’m happy about because 5 pounds in one week was a bit much…haha.  No worries, I am not losing weight per se, I just had gained weight from being on high doses of prednisone.  I am just fine in the weight department. Continue reading

Still not feeling well

Today I had a check up since I’m not feeling better after 6 days of IV antibiotics.  My lung function was down again to .88L/31% FEV1.  I started a prednisone taper on Tuesday, starting at 60mg for 3 days, 40mg for 3 days, 20mg for 3 days then 10mg for 3 days.  I was hoping that the taper would help with the wheezing and chest tightness, so far it’s a no go.  We decided that if I am not better over the weekend I am to call my nurse to be admitted.  They want to add Colistin to my IV antibiotics but want to start it inpatient because of the history of kidney problems with it.  There was that one time that my creatinine shot up to 7.0 with the normal range is up to 1.1.  Therefore we have to watch it every time I’m on it or any IV antibiotics for that matter.  So I will take the weekend to rest, do lots of treatments and hydrate and hope I feel better.  However I kinda feel like I am prolonging the inevitable of an admission.  Might need the heavy hitters to knock this one out.  I’ll update next week.

Until next time…

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

Happy CF awareness to me

I have not been feeling good for about 3 or so week, maybe more.  I did the 2 weeks of IVs 2 weeks ago and wasn’t much better but that is probably due to the fact that my pseudomonas is multi drug resistant.  We are limited on what will “work” on the stubborn drug resistant bug (pseudomonas) in my lungs.  I made the dreaded call after the 4 days of 40mg of prednisone and no improvement.  I need something more therefore I had to call with all the I have coming up.  I have a busy 5 weeks ahead.  Next weekend we are going to the Zac Brown Band Concert, a bucket list item for myself.  Then I have a girls trip to the Gulf Shores the next week.  Then in 5 weeks we have our good friends wedding weekend. Continue reading

I’m a winner….

I had CF clinic today for a regular check up.  Nothing seems to be regular about me anymore when it comes to CF and my depression….but anyway.  My weight is just fine and on the high-end of fine.  I’m not a fan but that doctors like it.  Dang medicines making me gain weight.  I might end up being one of those “fat” CFers.  Well I already feel that way but on to the next subject. Continue reading

Impromptu CF clinic appointment

Saturday will be 14 days of IVs so I called my nurse to let her know how I am feeling.  I am still having the pain in my lower right side (just at the bottom of my ribs) that has been there for a few weeks.  I’m convinced that my right lung has it out for me.  It seems to be where most of my infection is, I fracture ribs from coughing on that side and I also get random pains on that side.  Maybe it’s my special party trick. Continue reading