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 Cayston....my 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 side....my 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.

Clinic Appointment

Today's appointment was much better than I had expected. I thought for sure the spasms and clamping would have left my lung function less than last time. However, I was pleasantly surprised when I blew a 40%! Granted its only up from 38% back in December, but its up and not down. I don't remember what my other numbers were last time but my FVC is at 65% and my 25/75 is at 14%. So my small airways still suck, as usual. I left with a prescription for Cipro so I can get the last of whatever is brewing in there out and maybe I can see 45% next time I come.

The rest was basically routine. My weight is stable. My O2 and HR were normal for me. My only issue was the slight fever I had - 99.1. Odd because I felt fine. And even odder because last night with my wicked headache I felt like I had a fever and was even flushed but I was only 98.8. So maybe it was a delayed reaction.

Dr H and I discussed my move some more. I told him I want to keep him as my doctor for as long as possible. To which he said in 20 years I'll have to be on my own without him (lol you need to know him so you can picture him saying this and why I laughed). He said that I should still call and set up a relationship with MGH or B&W so if I have an emergency like an acute bleed or obstruction I will have someone to call. When it comes to routine clean outs we can figure it out but we will find a home care IV place that works in Boston so I don't have to spend 3 weeks down here in Philly. I feel much better having made this choice.

One thing he did mention is to make sure my insurance will cover anything I need to have done in MA. If I do need to be admitted up there, I need to make sure I will be covered. That is easy enough, I can call next week and find out. He doesn't foresee anything major happening and I seem on the "right" track with my "garden variety" CF, as he calls it. So I can only hope that he is right and I don't have any unforeseen issues until my slow and steady decline leading up to transplant land.
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Colistin update

I did my final Colistin treatment this morning. Granted I only had 8 days worth but still. I am not refilling my rx. I just can't do it. I want my lungs to go back to normal.

I talked to Dr H on Thursday and he started me on 10mgs of Prednisone twice a day. And to start tappering to 5mgs at night on Saturday night if I was feeling better. I am still on 10mgs twice a day. I feel no different, but yet I don't feel worse. So maybe that is something. I am supposed to call him today to update him. I really hope he doesn't want to see me on Wednesday. I will go home if he insists but I won't be happy about it lol.

At least it is not an infection and entirely from the drug. That is a relief I think.

My coughing attack Friday night when I got into bed left me at 80% O2 and 173 HR. Insane!!!! That has been the worst by far since I started. At least when I am watching my numbers. I have my pulseox glued to my hip so I can monitor. I probably should have my O2 on constantly to help but when I am sitting here my HR is only about 110ish and my O2 is in the 93-94 range which is normal for me. It's the up and moving around that gets me!

After I talk to him I will update my post.

You know its bad when...

A seven year old asks you if you're ok.

Yep my boyfriends daughter (who has seen her uncle go through all this and get a double lung transplant) asked me tonight if I was sick. I replied no its just my medication. To which she said oh ok just checking cause you're breathing all funny.

Ah good old Colistin.

I started Colistin again Saturday night and as of Sunday morning I'm horribly SOB and coughing up a storm. Its mainly a dry cough. I'm actually relieved I feel this way because now I know without a doubt it was not the study drug that did this to me. I never really thought it was but its nice to know for certain.

Looks like a call to my clinic is in store for tomorrow. I have a bunch of Prednisone I'm hoping I can just take instead of being admitted. I'm still in Boston and if he wants to see me I'm gonna have to head back down to Philly and I'm just not ready to do that.

I'm at a loss. This is the last inhaled antibiotic I have that I can take. If Azli gets approved soon maybe I will be able to take that. But this was my last and final try with Colistin. TOBI does the same thing so it leaves me with nothing to do. Does this mean whenever I get an infection I HAVE to do IVs? I like the 28 day cycle to keep me healthy. Maybe I can just alternate oral Cipro instead. I wish the inhaled version was out so I could do that. It worked like a charm for me.

For now I'll just be back to my 3 treatments a day plan and hope that my lungs open up.

Tiring week!

Today has been a semi-rough week. Between the Colistin making me tight as all hell and the low grade fevers I have been running, I am exhausted! My FEV1 on Wednesday was 32%. That was pre-bronchodilator but still. 9% drop is not fun!!!!

I know it is the Colistin because it is the same way I always felt on TOBI. I guess these inhaled abx are not good on my lungs. They are supposed to help but all I feel like doing is crawling into a hole for 28 days and hoping that it goes really really fast! It got to the point where now I am doing a treatment in the middle of the day at work. I need to in order to function. It’s really bad. And kind of weird that at the 4 hour mark I can feel my lungs constrict. I go in the back bathroom at work (privacy is needed for nebs lol) around 1ish and by 5 I am tight again. But at least it helps me get through the afternoon. And when I start to get tight I feel the fevers pick up. Very odd.

The fevers started Monday night. It was only 99.5 but it was there. Then I was fine until Wednesday when it was 99.6 at the DRs and then it hit 100.5 by night. Now I am running between 99.5-100.5 everyday. I feel sort of ok, just tired. I assume I am fighting something off. I wish I could figure out who was winning!!!! I’ve been going to bed around 8 every night so sleeping is really helping. Of course I don’t get home until 6:30 so I don’t get a dam thing done at night except for my meds and that’s it. Social life what? LOL! That will be one of the good things when I go on SSDI. AT least I won’t have to worry about my life disappearing when I get fevers and need to sleep. I can sleep during the day yay!!!!

I have another appt this Wednesday so based on how I feel I will see what I need to do. Hopefully the fevers will be gone and then I can be safe haha!

What really stinks is I can't run at all now. I just can't do it. I cough constantly without movement and when you add walking I can't stop. I don't even want to attempt running!!!! It sucks because I am going to have to start over when I am done with the meds. How am I to train for a 5k when every month I have to take a month off? No bien!!!!!!