Thursday, January 20, 2011

Balance It Out

Well, hello there, beautiful breathheads:

I'm writing this afternoon from my room on the 7th floor transplant ward of my hospital. My view is pretty darn cool, if I do say so myself, as my window looks right out over the Hudson River, The Empire State Building, and all those beautiful lights that make New York City's skyline so breathtaking. Oh wait, I'm sorry, where are my manners? Would you like to see it, too?

Amazing, right?

Unfortunately, though, my other view is slightly less...appetizing? I can, for example, see my body, which is currently sporting not one, not two, but...wait for it...three separate site for IV access: two peripherals and my port. I can also see the number of IV bags hanging from my pole, and I can honestly say that never have I seen so many in one place feeding into my body at the same time other than my time in the ICU immediately post-transplant. I can see the many doctors who keep walking through my door, and I can see the clock on my wall counting down the minutes until my next dose of cephapine, to which I am allergic. Oh, yeah, and I can see this:

I don't care what anyone says, peas and carrots are not supposed to be neon.

Aside from the food and the lock-up situation, though, things are going pretty smoothly over here. I was admitted directly from my bronch this past Tuesday after my doctor found continued secretions in my gorgeous new lungs. He's the "better safe than sorry" type (good find in a doctor, by the way), so he decided to pull me in here for a good old-fashioned dose of in-house medicine. This was actually tossed around as an option last week and I had time to prepare. I'm not pleased about it, to say the least, but I am accepting of it, which is a big first step. And after all, I want to do right by these beautiful breathers -- they (and I) deserve nothing less. The plan right now is to do a course of one very strong IV antibiotic called polymyxin B; do a normal course of IV levaquin, mycofungin, and oral minocycline; desensitize me to another option for use now and in the future as needed (heeeello cephalosporins! Oh, how I missed you and your thrilling scent of cat pee!); and check out if there's any rejection since I've had a couple of episodes since my surgery. Oh, and we're gonna throw in some sinus exams/consults and vascular treatment, just for laughs. We're funny like that, I guess.

So I'm in here, and I'm looking out at my twinkling city and I am, of course, super bored because that's how things roll at the hospital, and I find myself sort of leaning into the view -- as if my body just wants to leap out the window and fly down through that mass of steel and water and sky and humanity. Because it does. I suddenly realize that I am aching to get out of here. I am literally tingling with the thought of being allowed something as simple as the chance to walk down my silly little street in the West Village again. I am, in a word, desperate. It's not an uncommon feeling for me because I absolutely hate being "sick" and will do anything to avoid places that make me feel that way, but in this case I'm on a drug that they just won't let me start at home. I feel fine, all things considered, but I'm not allowed to leave.

Polymyxin as a drug is well-known for its evil side effect profile, one of the big ones being that it is nuero-toxic. Patients can experience this effect in different and diverse ways, but for me it's always been a tingly, numb-like feeling in my face and hands and a more or less destroyed sense of balance. And as those who know or have ever met me in person can attest, I am not particularly graceful to begin with, so any loss in this department is a huge step down in my ability to perform such complicated feats as walking or, well, writing this blog. And right now, that stuff is hard. It's really, really hard, as a matter of fact.

When I lose my sense of balance, I feel unsteady, awkward, and unproductive. I feel confined right now, quite literally insofar as I am in a specific ward on a specific floor of a specific hospital and can't leave -- I can't even take a long walk for fear of falling into some poor kidney recipient or whatnot. I can't shake these infections either, even post-transplant, and that makes me feel even more off-kilter. And so I find myself here, leaning into my window, staring out at the city and the life I adore from behind the glass of the life that keeps me going, but threatens to drive me crazy in the process. It's a familiar sensation to me, as I remember doing the exact same thing from Denver Children's Hospital when I was 15. I can't seem to check into this place, either mentally or physically, without feeling a sense of loss and desire. I just want to be done with this part of the production and on to whatever comes next.

But I can't be totally free, obviously, and I can't wish away CF or transplant or any of their nasty little siblings. I can't change what's already happened and I can't (or rather, I don't want to) sit around and worry and squander the moments when I could be out showing these lungs a good time. I can't bear the thought of cheating myself out of any more time. Period.

And so I have to choose balance, by necessity. For me it means knowing when to push my doctors for more in the life/freedom department and when to back off and trust their judgment in the health/lung part of the deal. Truth be told, I want both a long and a happy life, and I'm not willing to compromise much on either. So I have to learn how to walk this tightrope, even if it does sometimes land me with my nose against a frosty windowsill. The alternative on either side to me would mean giving in to my disease: either by being stubborn and allowing it to take my health and good judgment from me or by being too scared and allowing it to take my spirit. I can't (and I won't) let either of those things happen if I have any say about it.

I haven't yet found the perfect combination, and I seriously doubt I ever will get it exactly right. After all, I am alive, and that makes me prone to mistakes. But tonight, in my cozy, lonely, familiar hospital room looking out over my huge, crowded, exciting city I know that I am the consummate balancing act between these two worlds. And it doesn't feel bad at all.

Well, aside from the food, of course.



  1. Hang in there Piper. I'd also suggest you have someone smuggle in your favorite take-out beause the hospital foodmay prove more deadly than the infection.

  2. Hmm ... I second that idea of smuggling in food. Neon veggies and unusual brown lumps sitting next to it (whatever that is)? ((hugs))

  3. Piper,

    You're an inspirational and strong person. Thanks for telling your story.

    It helps to read that someone else is going through the same thing. Unless people actually experience it....they still don't understand it!

    I was told recently by the CF/infectious disease dr. that I would basically will be on IV antibiotics for the rest of my life:(

    But at least I have a life now....I still have a 6 yrs. old to raise and I don't have time for these damn "MAC" bugs to get in my way!!!

    Keep kicking ass and fighting the fight...there is a reason we survived all of this!!!

  4. Piper, can I send you a beady craft project or something to help pass the time? Wish I could wave a magic wand and set you free. {{{hugs}}}

  5. Hope you're back on the streets soon!.. wait.. you know what I mean.. :)

  6. I've been reading your blog for a while now piper and have never commented - I am a mom with two daughters with CF (24 & 22), and luckil so far they have both stayed fairly healthy. Reading your blog today you made a comment that really struck me - to the point that I have copied it to show my daughters. You said that "The alternative on either side to me would mean giving in to my disease: either by being stubborn and allowing it to take my health and good judgment from me or by being too scared and allowing it to take my spirit. I can't (and I won't) let either of those things happen if I have any say about it." I really admire you and your spirit and truly hope that you get these issues cleared up and live that life you so deserve. Thanks for giving me so much hope and inspiration.

    Terri Collicott

  7. Hang in there Piper... I agree on the neon carrots.. but what has me even more concerned, not just as a vegetarian, but as a fellow human is what that blog is beside those veggies... the hazmat folks need to remove that tray PRONTO

  8. Keep yer head up, Piper. And take care.

  9. Hey Piper - There is no other way around it, being in the hospital SUCKS as all CFers know. I find it helpful and gets my mind off of where I am when visitors come (and bring Dunkin Donuts coffee and McDonalds). I also try and get caught up on writing and reading as well, I consider all of these my silver lining. Even though you can't get up and walk around ask a nurse or LPN to wheel you around the floor, at least that way you can get out of you room for a bit. Hugs to you, I go for my transplant evalutation results on Monday and I am quite the normal combination of anxious/scared/excited - Hopefully my journey will truly soon begin.

    Love and Hugs Always - Keep fighting the good fight!

  10. Piper I really like this statement you made. "The alternative on either side to me would mean giving in to my disease: either by being stubborn and allowing it to take my health and good judgment from me or by being too scared and allowing it to take my spirit."

    I know you don't want whats going on to take your spirit away, but how difficult that can be in a isolated hospital room where you feel like your going backwards on the health curve. I think every individual deals with some issue or another post transplant, and it all is personal. I really like your attitude and humorous view on what these lemons hand you. It's great to see your doctor's playing it safe... it shows how much they care for you! Keep shining!! Sending you hugs and prayers tonight.

  11. almost never get around to posting on blogs anymore but wanted to say how much I adore your writing, almost as much as your spirit. I am Blessed for 'knowing' you. Hang in there and PS I can't believe how bad your hospital food is in NY, we have a menu to order from even way over here in the boonies i.e. MI and some of the food is actually decent!