H is for hate this. I'm sorry, it's true.
O is for "oh gosh, food here tastes like poo."
S is for sitting and waiting all day.
P is for Piper does not want to stay.
I is for icky, rejection that's you.
T is for all the things I'd rather do.
A is for at least my docs are the best.
L is for lungs that will soon pass the test.
All right, so now that we've got that one out of the way...
I checked into the hospital this morning for what appears to be a rather stubborn case of acute inflammatory rejection in my lungs and airways. This is, by the way, the same rejection (and the same pseudomonas infection) that my doctor caught at my bronch a few weeks ago and that we treated with high dose prednisone for a couple of weeks. I took the steroids, took some antibiotics, did a few days of IVs, and just like that I started to feel as much like new as a gal living with "gently used" organs ever can. Then this past Thursday my doc did did a routine follow-up bronch and discovered that not only is the rejection still there, but it's gotten slightly worse. Cue the dramatic music.
Although, actually, don't cue anything, because word on the hospital street is that this really isn't the end of the world. Apparently steroids are the first line of defense against rejection, but when they fail to do the trick (and sometimes they do), there are other, more potent drugs that they can use to nip the problem in the bud before it escalates into something more serious and less treatable. Drugs like, for example, the one I'm currently infusing as I type:
"Antithymocyte Globulin Rabbit."
The antithymocyte means it is a lean, mean, t-cell killing machine. The word globulin means, I believe, proteins found in the blood stream. And the word rabbit means, well, rabbit. Yeah, I know, although to be fair this is hardly my first walk down the medical/animal ethics path. Digestive enzymes, for example, are made of pig parts. Pulmozyme, no joke, is derived from Chinese hamster ovaries. Put that in your neb and smoke it.
And this drug, it appears, is made of rabbit-produced antibodies designed to attack and kill human t-cells in order to protect the organs of yet another human. This is starting to feel kinda crowded.
The protocol for this drug is "at least" five doses running for "at least" five days in the hospital. When I told my doctor that I wasn't a huge fan of the words "at least" in the medical context, he chuckled. Not a great sign. In addition, while I'm in here, I'll also be receiving IV ganciclovir (an IV antiviral), oral levaquin, and high-dose steroids in the form of IV solumedrol. All of that stuff is pretty par for the course on any CF/transplant admission (plus it gives me a plausible excuse if I'm ever feeling grumpy), so I'm pretty much fine with it.
So far, all I can really say about this admission is that's it's going to last for "at least" this upcoming week and is probably going to be somewhat unpleasant -- between the steroids and the rabbit poison (um, I mean "treatment") designed to essentially destroy my body's natural defenses, I'm not betting on a barrel of laughs. Then again, the guy in the room across the hall from me apparently missed the memo that hospital gowns actually have ties in the back to keep them closed, so maybe this will be kinda amusing after all. At any rate I am 100% optimistic that it will be effective -- and right now that's just about the only thing that really matters.
Now let's hop to it.
PS: On a personal side note, a friend from the CF community got her call for transplant tonight at this very hospital. Knowing I was here she sent her very lovely mom to come find me and tell me the wonderful news. A few hours ago I got the AWESOME update that she is, indeed, in the OR right now receiving her new life. Please keep her family and that of her donor in your thoughts, prayers, and intentions tonight as they make the leap of faith that is lung transplant. I'm so happy for her I could, um, let's just say "jump" for joy right now. Thanks in advance, beautiful people.
- 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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