Monday, January 3, 2011

Inhaled ABX and me do not mix!

Well it is official....I can not do any inhaled antibiotics anymore.  My last shot was the Cayston and my body rejected that this round.

I am thankful I had the Colistin experience to draw from otherwise I might have let this get too far.  And by this I mean the tight lungs and low O2 sats.

It all started when I received my Cayston on December 23rd.  Already a few days late thanks to a glitch at the processing center in Lynn.  I was supposed to have it by the 20th, but no big deal.  I could still get my 28 days in by January 18th for day one of the study.  I started the regimen that evening and felt normal.  Same for Christmas Eve and then again on Christmas.  Though I was feeling a bit tight by Christmas morning, we attributed it to running around like crazy all week.  I woke up on Sunday feeling tight and it just got worse.  Not horrible but worse; I even asked about tightness on CF2Chat to see if anyone else had tightness from Cayston (it's a very well tolerated medicine).  No one had but there were some suggestions for me to try.  Things I'd have to wait to ask my doctor for on Monday/Tuesday.  Sunday into Monday we got a blizzard and pretty much everything was shut down, including my doctor's office.  So I made sure I took my Zithro, Symbicort and Albuterol before the Cayston, even giving the Symbicort 15 minutes to get into my lungs.  It didn't help.  I made sure to do the Albuterol at dose #2, and that didn't help.  By Monday night I was dreading packing the car for Em and I to leave on Tuesday for PA.  At this point my O2 really wasn't much lower than normal though I wasn't checking it as often as I would when I am sick.  I also ran a 101.1 fever on Sunday night which didn't go away until Monday morning when I finally took some Motrin.

Tuesday rolled around and I woke up with a fever again...99.6, which no is not bad but to start the day on that is no fun.  I took more Motrin and started my regimen and prayed it wouldn't start to bother me till after the car was packed.  I got lucky and while I was tight I was able to pack everything in.  Even in the cold air.  That didn't last long.  We left for PA and things were good.  Sitting in the car doesn't really expel must energy thankfully.  However, when we stopped at a rest stop for lunch things just went blah.  I could barely walk into the rest stop I was so SOB.  Granted it was freezing outside but the walk was maybe 100 yards at most.  Nothing bad, no hills etc.  We ate and when we walked back to the car I was even worse so as I sat trying to catch my breath I checked my O2.  83% and 156 HR.  No good!  I knew then that the Cayston was not working out.  I still finished the day out though and even one dose into Wednesday.

As Tuesday wore on, even just driving in the car, my SOB got worse.  Talking became difficult; full sentences were hard to get out without stopping to gasp.  Even Em noticed.  My resting HR was now in the 140s even with my O2 running 90-93%.  And silly me didn't bring my portable O2 because "I don't need it with rest" HA!  Shame on me but really I had so much packed already that I couldn't even think of packing more.  Not that it would have helped much since I slept poorly next to Em anyway.

Wednesday morning was my last dose of the idea, as I still hadn't contacted my doctor.  By Wednesday night I was feeling slightly better.  The tightness had let up some so that I didn't totally scare my dad at dinner.  Thursday morning I wrote to the NP at Children's and explained everything, also asking for a prescription for Prednisone.  It was the only thing that had helped with the Colistin troubles.  They called me back and said to definitely stop the Cayston and up the albuterol to 3-4 times a day if I hadn't already.  With that alone the tightness should wear off, but they were calling in the prednisone just to be safe.  She said if my breathing did not improve and my O2 stayed low to go to Brigham's ER.  Fortunately I didn't get to that point.  By Thursday night, when Em and I got home I was feeling pretty good and when I started the prednisone on Friday night I felt even better.

As of now I feel normal and on the plus fevers have gone!  Totally gone.  I am back to running around 96.5-97.1!  So happy!!!

Disappointment is definitely called for as I now can only take oral Cipro, if we catch the infection in time, or IV meds.  Though I might see about trying the Cayston again after the study, but starting Prednisone before I start the Cayston.  It might work and help keep me off IVs.  If not, a Cyster mentioned seeing if I can stay on a low maintenance dose of Prednisone since I respond so well to it.  That is a thought too and both have gone into my list of things for my appointment.

When this happens I always catch a glimpse into my future.  I am fairly healthy now, even with low lung functions and reactive airways.  Which, ironically, don't seem to be bothered by some things that bother those without CF (some perfumes, cleaning products, candles).  But struggling to breathe always sheds light on my situation.  That really any day I can wake up with lungs that are far worse than when I went to bed.  That one day Prednisone alone will not open my airways up.  That one day I will need a highly invasion surgery to make me able to breathe better.  The key in all of that is ONE DAY.  For now, I thank God that the Prednisone and discontinuing the Cayston worked.  That I am now running on a manic episode thanks to the Prednisone and getting tons of things accomplished.  That I am now home and breathing with this less than perfect but still my own lungs.


  1. You keep fighting the good fight - I myself am a 33 year old with CF and I have recently started the tranplant process, I had my first day of evaluation testing today. Went well but getting scarier because it is starting to feel real. I get a huge source of strength from reading other CF blogs and knowing that we are all in this craziness together, please follow my blog if you like it's called Life and Stuff. Look forward to reading your updates and hopefully having a new cyster as well :)

  2. It sure is frustrating when the easy fix (inhaled abx) isn't so easy! They sure sound so much better than IV's in theory. My first experience with TOBI (suffered through the entire course) gave me the worst lung function I'd ever had afterwards. A couple years later I tried again with the same results, but this time I was smarter and quit 1/2 way through since I knew it wouldn't "work itself out." My twitchy little lungs just don't like the inhaled version. I have never tried the Cayston since I am allergic to its oral counterpart. I do use a low dose of prednisone and it helps the most and although I do hate the side effects, I do love to breathe. Glad you're doing better.

  3. Sorry to hear Amy, I really wish it would work for you.

    Your base temp is low! I can imagine 99.6 is high for you.

    I usually never run below 98.6 (which is 37.0 overhere). And when I get up my temp shots up to 99.86 (37.7) fairly quickly. It's always like that before noon. But still like that when I go to bed. So luckily it doesn't really go above 38.0 C as that is when I have to call clinic now I'm post tx.

    They think this temp with me is related to my chronic sinusitis. I think I had this temp pre tx too.

  4. That sounds like a scary ordeal Amy! I'm glad you were able to get things figured out, even if you aren't going to be able to do inhaled abx. Happy New Year! ~Juliet