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?
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.
- I am a 33-year-old wife, sister, daughter, friend, law school graduate, CFer, lifelong student of public service, blog writer, patient, Sagittarius, reader, Top chef fan, double-lung transplant recipient (twice!), and dog owner living in Colorado's beautiful Mile High City. I love all things colorful, funny, inspiring, or needlessly sarcastic. I share my city with about 2,500,000 other remarkable people, share my disease with 70,000 other beautiful souls, share my life with some unbelievable family and friends, and share my apartment with one very handsome guy and one really fat mutt with a kick-butt personality. We make it work.
About This Blog:
This blog is about me, my life, my sometimes craziness, my disease, and my current journey as a double-lung transplant recipient. It's also a celebration of everyone out there with CF (and other chronic illnesses). It's for you, inspired by you, and dedicated to you -- the community that keeps me writing, living, and breathing.
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