Sunday, May 15, 2011

The News

In case you haven't noticed, there's been a lot going on around here lately. And believe me, it's fine if you really haven't noticed, because I've been a little absent and I realize that my last post was a little, um, cryptic? But the point is that whether it's been obvious on this blog or not, there has been (and continues to be) a heck of lot going on in My So-Called Cystic Life -- some of it good and some of it bad. So I thought I'd take a second to catch my beautiful breathheads up a bit on all the news in my life.

The bad news is that I remain on and off IVs every 2-4 weeks like clockwork, and have since my transplant almost a full year ago (before that I was just "on" though, so maybe this is better?). I'm always a little tormented about what (if anything) to say about that, but the simple fact is that I never promised this blog would be easy. I never promised it would be 100% positive. I never promised it would always be fun. What I did promise, however, is that it would be honest, so I figure I should just bite the bullet and type the truth. For the past few months my docs have been hardcore pushing a new drug cocktail on me, consisting of mostly polymyxin and aztreonam as opposed to my usual aztreonam/merrem/imi/cipro/cayston/levaquin/minocycline/whatever combo. It's been . . . um . . . well, let's just say that it's been interesting (and that it's involved enough walking into stationary objects to make The 3 Stooges extremely proud). It's also involved a couple of rounds of cefapime (neither of which lasted more than a couple of days before the drug was pulled due to allergies) and a whole host of other "fun" excitement from nausea to low WBC counts to weird pigmentation issues. (Seriously, if one more person asks where I got so "tan" they're going to get a squirt of polymyxin in the eye!) So, um, yeah . . . the past few months have been decidedly "not boring" from an infection standpoint -- although one has to wonder when the infection starts to just become "normal" and being healthy actually becomes the "weird and unsettling" part. I'm trying hard not to slip into the mindset, believe me.

The good news is, though, that while all of this has been pretty annoying, I really can say that it's been exactly that: annoying. As in, not life-threatening, not super scary, not mind-blowing, and not "oh my goodness get me out of here because I just don't know if I can take this anymore" style frustrating. Just annoying, plain and simple. My kidneys aren't failing due to the drugs, my lungs seem to be holding up just fine despite the onslaught, and my gut is . . . well, let's just acknowledge that they didn't give me a gut/pancreas transplant and leave it at that. (And to the CFers out there: don't pretend you don't all know exactly what I mean by that, by the way!) From a major transplant complication perspective, in fact, I really don't have much to report on here at all -- and for that I am beyond grateful.

The new news is that I did have a bronch last Friday, and after it was over I did in fact make it over to see my ENT in one of my hospital's outpost buildings way the heck across town. For those of you who may have already had the -- ahem -- pleasure of experiencing a bronch, you'll understand that going anywhere directly afterward defies all normal laws of logic, reason, and fentanyl. Nonetheless I was able to make it, thanks in no small part to my lovely sister, and while there I learned that my sinuses are pretty much completely blocked. As in, there was no black on my CT scan, in any of my sinuses. At all. So we went ahead and scheduled sinus surgery, which I'm really hoping can be done on an outpatient basis, and I think we're all hoping things get better after that.

As for the actual bronch, it was uneventful. Doctor found some slime in my upper airway (thanks again, sinuses!) and we're checking for rejection due to a very small dip in my more recent PFTs. The goo culture and the biopsy results should be in next week, but until then I'm choosing not to worry and to focus on things like CF awareness month and Great Strides instead. Not that I have anything against sinus slime, per se, but, well, it just doesn't make for a very pleasant weekend to dwell on that sort of stuff.

So that's the update -- 100% free from any crazy wordplay or other random piperisms. And I have to say that it really does feel amazing to write it out; to know that I have the sort of friends and community who is ready (and able) to receive this slimy, gooey, messy story of tangled IV tubing and annoying antibiotics and perpetual procedures without judgment and without shock or pity or total confusion; and, if i'm lucky, to maybe even earn the chance to let it go. And this should have been old news to me, I'm sure, because I don't know how many times you guys have taught me this lesson in the past, but old habits die hard and I think I will forever be the girl who would prefer to be cryptic than to be (almost) heartbreakingly honest.

Sorry guys, I had to do it.

So thank you, all of you, for teaching me honesty and for reading -- even when the going gets admittedly tough. I wish I had better words to say it. I wish that I had half the force as all of you together have. I wish that I could be as big of an inspiration for this community as it has been for me. And, above all, I wish you all lots and lots of news now and for a very long time into the future.

And all the friends you need to get you through it.


  1. Piper, Thanks for the not-so-cryptic update! I do hope the sinus surgery goes well and it gets you some freedom from IVs! :) I had the nose roto-rootering done, and while it's not fun, it's not nearly as bad as abdominal surgery... and thought I haven't had a lung TX, I'm quite certain it's waaaay easier than that! :) Sending many healthful healing (((hugs))) ~Juliet

  2. I prefer real and honest, even heartbreaking, over ultra-positive any day. I'm sorry that your journey has been annoying. I'm hoping that with time and this surgery that things get smoother...

  3. Wherever you go, there you are Piper. We'll be sure to follow. Thanks for checking in.

    I'm optimistic that your sinus surgery will be the key to a major improvement. It has always been that way when I've had mine. Crossing everything for you.

  4. Ah heck Piper,
    So sorry you've had to deal with all this annoying stuff. Am keeping my fingers crossed that sinus surgery will lead improvement, and that we'll see you at the wedding. I'm itching to give you a great big Beatty hug. Until then, know that I send you cyber hugs every day. Love you lots my beautiful cousin.

  5. I'll keep reading as long as you keep it honest. It's not like I subscribed to a food- or mommy-blog, after all.

    And thanks for the update. I'm glad to hear it's all just annoying.

  6. It was surely not your expectation to still be doing IV's at this point so I'm sure it's beyond frustrating. I'll be hoping the sinus surgery gives you amazing results and gives those germs the ol' heave-ho.

  7. Keep on rockin Piper. Sinus surgery is no walk in the park but after having a tx it should be gravy ;) Sending you lots o light an love.