Hi there, lovely readers.
I've had a lot of you ask via the blog or FB or messages how I'm feeling lately, and I guess the best answer I can give you right now is that I'm feeling a little, well…
I'm feeling a little leaky.
As of right now, I'm still in the hospital with two chest tubes: one "regular" tube that has been in since my transplant and one "pigtail" tube that was placed last week as a way to combat something called a "pleural effusion" (layman's translation: fluid in chest cavity around the lungs). Both tubes have been working on draining fluid, and the regular tube has also been hooked up to suction (exactly what it sounds like -- just a tube that sucks out air) to remove subcutaneous air from under my skin. That would be air that leaked in through -- you guessed it -- the chest tube. Confused yet? Good, because I am too.
Basically, the story is that I'm leaking some fluid, and I'm leaking some air, and both of these things need to be resolved before I can really think about leaving, which is way more fun than leaking any day. All of these things have also left me feeling a little "leaky" emotionally, meaning I've just been a little drained, a little defeated, a little not-so-Piper-like lately. And that just means that this 30+ day hospital stay, as necessary and wonderful as is it is, is getting a little old. There, I said it. And you know what? I'm not even sorry.
In fact, I even told my docs as much the other day, pointing out that my mental state recently has been a little harder to control in terms of keeping my head in the game and staying positive. Don't get me wrong, I'm not flying off the handle (yet). I'm not depressed (yet) or overly anxious (yet), but I believe in being proactive and I believe there's more to life with illness than pretending this stuff is all sunshine and rainbows all of the time. So I asked my team what we could do to make some progress over here, and they came up with a reasonable, medically appropriate answer.
Right now, we're conducting an experiment. We plugged one of the chest tubs 24 hours ago, and so far the fluid accumulation and air leaks have not gotten worse with that tube out of commission. Should that trend continue for another 24 hours -- a full 48 in total -- then we may just pull that tube and see what happens with only one tube left. It's a good experiment because sometimes the body just needs a little urging to start doing its job and picking up the slack from the leaky fluid and air, and it looks like that might even be true in my case. Believe me, all fingers are crossed and all our thoughts are dry and air-free over here.
So that's the latest and greatest from over here in our tubular, leaky little world. My doctors have also "prescribed" lots of walking and some time outdoors as often as possible, for which the North Carolina weather is a blessed help right now. I'm happy that the team is taking my restlessness seriously while continuing to balance my physical health needs -- it shows concern for me as their patient on both human and clinical levels. All in all, that's probably the best indicator I have that things are looking less leaky around here -- for the tubes and the tears.
And here's to all of it drying up!
- 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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