Friday, August 28, 2009

(Poly)myxin it Up

Alright, we've had the break DOWN, so now let's mix (or maybe in this case, "myx") it UP, shall we?

Here the situation: yesterday, after starting IVs the day before, I realized that the combination of fevers, chills, being exhausted, and coughing up tons of goo probably didn't bode too well for my ability to effectively manage and stay on top of my CF care at home. I knew I needed a little extra umph, and my doc agreed, so I went ahead and checked into my beloved Columbia Presbyterian and ended up here -- about 10 miles and the length of an entire (rainy) island away from my puppy and my apartment.

It's been non-stop ever since.

Okay, I really hate to complain, but let me get this one off my chest (and yes, bad pun intended, deal with it). I am in, quite possible, the most ridiculous hospital room ever. Seriously. It's an isolation room, but not just contact isolation like they use for most CFers. Oh no, this is full-on, hardcore, "wow, she must have swine flu AND tuberculosis to warrant that kind of lock-up" style room. There's not even a window to the outside in here, as if I might accidentally infect the boats on the Hudson were I allowed to see them. Although, to be fair, the room does *technically* have a window. It's just too bad that said window a) is covered by a large cabinet of sorts, and b) looks out into a weird hallway that appears to serve as some sort of storage area for unwanted hospital chairs. Weird.

Alright, so I'm admitted, and there's NO WAY that I'm infecting ANYONE within 50 miles of this hospital with Pseudo (at least not yet -- apparently I'm first in line for a room change as soon as one becomes available, for which I am totally grateful). Sounds good, right?

Well, sort of. See yesterday they made the somewhat difficult, but probably necessary, decision to actually STOP the antibiotics. They stopped the drugs, waited for my fever to spike, and then drew blood cultures that were free of anti-infectives and should show exactly what's going on just in case this isn't a classic lung infection. I think, although I'm not entirely sure, that they did this mostly because of the weird, still-unexplained fevers I had been running a few weeks ago, and the off chance that this is some sort of relapse of that problem rather than what it likely is, which is yet another fun CF exacerbation. So the downside of all this was that last night I had to go through more fevers, and I coughed all night, and I had to spend a night in the hospital without receiving any treatment, which is always frustrating. But at least if those cultures are negative (and they most likely -- finger's crossed -- will be) then there won't be any more talk of removing my port.

So today is a new day, and they just now restarted my antibiotics. I am now on tobra and a new drug: polymyxin. Here's the Antibiotics for Dummies version: the polymyxin family is most commonly known to CFers because of Colistin, which a lot of use as an inhaled antibiotic. I'm not on IV Colistin, but a slightly different form, known as Polymyxin B. Consider it for all intents and purposes the same thing. Basically, this drug (as I understand it) is pretty much the ultimate in last-resort drugs to treat PA. "Ultimate" because it's normally very effective. "Last resort" because it's also known to be pretty neurotoxic and nephrotoxic. The nephrotoxicity doesn't tend to be a problem with patients who have normal kidney function to begin with, I'm told (and thankfully I do), but the neurotoxicity can cause pretty unpleasant side effects in some patients, ranging from tingling and numbness to confusion and hallucination. Yikes. The good news? Well, first there's the fact that I'm in the hospital, so I have people here to monitor and help me. And second, well, the effects (both neuro and nephro) tend to go away upon discontinuation of the drug, which has a pretty short half life (a few hours). And finally, well, the only reason we're forced into this drug is my allergies, and not insensitivity on the part of my PA, so if the side effects are too uncomfortable after a dose or two, I'll simply stop this IV and get desensitized to zosyn or ceftaz, which I'm told is a pretty straight-forward process.

I'm not going to lie, I'm a little nervous. My infectious disease doctor ordered the dos (which is normally once a day) broken down into two doses to try and avoid any reactions. That's a good thing, except for the fact that each dose lasts 4 hours because he's also ordered it diluted in a TON of dextrose. But if I tolerate it well then yes, I can go home on it, and while it would likely be a pain to be on an IV that long, it's better than the hospital.

Not everyone has side effects so hopefully I'll be lucky. And hopefully this drug will do the trick and I'll be able to go home on Monday or Tuesday. Weekends around here are always pretty boring, but finger's crossed that I'll at least have a window sometime soon, so I can at least watch the river during my 4-hour IV drip.


  1. Girl!! Your at it arent you!! From fires to exploding inhalers to possibly seeing things the rest of us dont..haha! What a life you CFers live!!

    I hope all works well with this new med and your fevers go away for EVER!!
    You will need to hurry home or theres no telling what your furry friend may do =)


  2. I hope you get that window...a room with a view is one of my few requests when I go into the Hole.

    My fingers are crossed too that the new drug works and you don't start seeing things :)


  3. See, now I was thinking that if I hallucinated a window with a view, that could actually be a GOOD thing ;)

  4. I hate this for you. Feel better soon.


  5. Get better soon and kick these fevers on the ass!

    Polymyxin side effects sound like what I get when I'm on IV colistin. Although the side effects are fewer each time I need more IVs.

    There's got to be a bright side though... endless supplies of jell-o, maybe? That is, if you like jell-o. Xx

  6. I'm thinking of you girl! And if you need to chat when bored t his weekend you got my number!

    Love you tons!

  7. This sounds a lot like the situation I'm in. My Pseudo is achromobacter though, which I've never had before, and is entirely resistant to everything. Never heard of the polymyxin but I hope it works well for you!

  8. see, apparently my pseudo AND my achromobacter are susceptible to this stuff. update from day 2: it's powerful -- my face is numb and i'm walking like a drunk, but i'm generally tolerating it well. feeling SO much better though.

  9. You should not be on polymyxin B as it is significantly more toxic than Colistin (colistimethate) with is polymixin E
    (I am UK advisor on Colistimethate).