. . . I will officially be IV FREE!
. . . will mark the 17th day since I left work (but who's counting?)
. . . may very well be the day my friend and his wife welcome their second child into this world.
. . . someone, somewhere, will receive a lifesaving gift via the miracles of organ donation.
. . . it is supposed to get into the 70s here in NYC. One word: finally.
. . . marks the beginning of a very fun weekend, including plans to visit an art show, have dinners with friends on both Friday and Saturday, and time with my sister and her friend from Kenya.
. . . I will officially be IV FREE! (Whoops, did I already say that? Sorry!)
. . . will be a really, REALLY good day.
Seriously, I'm really excited. I cannot WAIT to have this thing out of my arm again, and here's hoping that this time it can stay that way for at least a month. Preferably more, obviously, but at this point I'll take what I can get.
Thanks to everyone for their comments about my last post. I haven't seen my doctor again yet, and I don't go to her until the week of May 4, so I'll ask her my questions then, and I also have the remaining evaluation tests (like the heart cath) scheduled for May 11th and 14th, so after all that I'll know more about what the plan is. Right now though, my inclination is to follow my doctors' recommendations and then fight like hell to delay the actual NEED for a transplant as long as humanly possible. And just in case anyone's worried that we arrived at this place without really trying the alternatives, here's a quick recap of some of the steps I've taken in the past 12 months, during which I have been on IVs 7 times, 2 of which have been for 4 weeks or more:
-Aztreonam Lysine for Inhalation Study -- Expanded Access Program
-Exercise (I either run or do a mile and a half hill walk everyday, in addition to walking to work and walking my dog, plus strength training)
-Gaining about 15 pounds through insane use of supplements
-Flagyl for possible anaerobic bacteria
-Pulmicort inhaled steroid
-Switching from albuterol inhaler to nebulized version
-Moving to a brand new, mint apartment with no carpet
-Extended high-dose prednisone
-Increased airway clearance and increased HTS treatments
-2 hospitalizations with IV steroids
-Nexium for reflux issues
-Decreased work schedule
-Bronchoscopy and CT scans of both lungs and sinuses
So yeah, about all that's left is stopping work altogether (and I'm taking a break now so we'll see how that goes) and a g-tube, which I do NOT want. At all. So as long as I can force myself to drink 6 Boost Plusses per day, that final one isn't going to happen.
And you know what, even after all that I'm pretty much convinced that I can get better. I honestly believe that right now, crazy as it sounds. I don't ALWAYS believe it -- when I'm sick it gets really, really hard to convince myself -- but the majority of the time I seriously think that I'm right around the corner from a breakthrough and that one of these days something will "click" and my PFTs will start climbing again, or at the very least I'll stop getting sick all the time. Hey, it could happen.
But in the meantime I don't want to let my optimism give way to naivete. I have amazing doctors, and I trust them with, well . . . my life. These people know what they're doing -- they are, respectively, the director of a nationally accredited adult CF center with a great reputation, and a transplant pulmonologist at an amazing hospital that happens to be "very heavy on CF" when it comes to the lung transplant program. So I have to have faith in them as well as in myself, and right now that instinct is telling me that they're right when they say better to be on the list healthier and at least have the option of accepting organs if they come along than to gamble with the chance that one of these infections might ultimately prove life threatening. And if this proves a leap of faith in some ways, well then, I guess we all have to make those choices sometimes, right?
So my decision, for now at least, is to get listed -- which seems both monumental and anticlimatic at the same time -- and then to fight as hard as I can to get back to a point where people feel comfortable taking me OFF the list again. Because where I am now I need a lung transplant, and maybe that won't change at all, but then again maybe it will. Hell hath no fury like lungs scorned.
And that's the plan for tomorrow.
- 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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