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…

Sick yet again!

Hello friends and family!  Seems like I was just here updating you all.  Well I am not feeling good again after only 2.5 weeks off of IVs.  I started with the dry unproductive cough again which was what happened before I was hospitalized at the end of March.  Along with achy and my chest is sore from all the coughing.  Plus I still have the pulled muscle on the left side of my chest which seems worse the last few days.  It hurts so bad to cough.  I’ve been trying to brace myself when I cough but that doesn’t even help.  It’s like something is stabbing me every time. 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…

Virus hell

I started having viral symptoms on the 22nd)…fevers, body aches, chills, horrendous cough, horrible chest pain from all the coughing, shortness of breath, etc. I finally had enough yesterday and had to go to the ER. There was no CF clinic for me to be seen in this week so ER it was. I tested negative for the flu which I was exposed to. My chest X-ray showed no changes and no pneumonia, all good there. Labs showed that my white count was elevated so my body was definitely fighting something.  I was started on IV Zosyn and oral Levaquin. I didn’t get to my room until 9pm.  I did lung functions while in the ER and my FEV1 was down 10% to 28%.  That’s a decent drop.  This virus or whatever it is a doozy. Continue reading

3 Weeks of IVs down

Just a short update:  I finished 21 days of IV Aztreonam on Monday.  The Levaquin was not extended which I am grateful for.  It causes me lots of arthritic pain and makes moving around painful in my joints, all over.  As for how I’m feeling now…I’m decent enough.  I still have a dry sounding productive cough.  I will keep an eye/ear on it. Continue reading