Disclaimer: With a couple of exceptions for Sampson and the view from my apt window, most of the below were taken at my hospital, under the unflattering light of an exam room, using an iphone. Suffice it to say these are slightly less than "glamor shot" conditions -- consider yourself warned.
So today my mother:
left this little guy behind:
and headed away from this view:
(all the while dragging this* with us):
until we finally reached this view, and all that comes with it
In other words, I had transplant clinic.
*For those of you wondering, this machine is my Sequal Eclipse 2 portable O2 concentrator. This is one of my all-time favorite pieces of equipment. It's (relatively) lightweight, it's on wheels, it has either pulse or continuous flow, and if it starts to run out all you have to do is plug it into the nearest outlet or switch out the battery. I have portable tanks too, esp. for working out or things that involve a lot of outdoor walking, but this machine is FANTASTIC for overnight trips, airplanes (FAA approved), and marathon appointment days at the hospital.
Not a whole lot to report. I apparently still need new lungs, and they are apparently still working on making that happen, hopefully sooner rather than later. I am starting IVs again today, but only one since I'm on inhaled TOBI already and we're going to hold off on IV tobra for a while. I did another 6MW test and dropped a couple hundred feet to around 1600, but I guess that's still not all that bad, especially considering that I'm in the middle of yet another exacerbation.
Um, yeah, this is my 3rd round of IVs for 2010, in case you're keeping score. And you know I hate useless comparisons, but it looks like 2010 is on track to be every bit as ridiculous IV wise as 2009, if not more so. Clearly I'm an IV junkie at this point and should be in some sort of 12-step program -- just so long as step 1 involves new lungs!
Anyway, IV madness aside, today really wasn't too overwhelming. I'm feeling more and more secure in my transplant team, and they've been very forthcoming and honest about where I stand on the list and what my options are. I know at this point in the game it's all about patience and just trying to live as much as possible until those perfect lungs come along. And I'm really hoping that the IVs I'm starting today will help with that too. Because let's be honest, it's a hell of a lot easier to be patient when you're not choking on your own breath half the time. Or maybe that's just my personal opinion.
Then again, coming home to a (snow-soaked) shorkie makes it a little easier too:
Much love for a wonderful weekend, 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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