Okay first off, can I just say that wow, it's been an intense couple of days? Seriously, I don't know what I would have done if my mother hadn't flown in from CO to help me out for a while. Funny how sometimes you just need a mom around, right?
I got out of the hospital on Saturday right after CPT, which was awesome. The RT staff there is amazing - they always make sure to hit up all the CFers by noon at the latest, since in the words of one great RT, they know we need it to be comfortable. The bonus to this is that we get discharged earlier as well. So I was on my way home by noon, and not a moment too soon. The only bad thing being that the nurse or pharmacy or someone f-ed up and gave me parkinson's medication instead of my prednisone. I looked at the pills, which were round and slightly off white rather than round and white, and immediately questioned it. Thank god for my professional patient status, huh? Anyway, for future reference and to anyone who cares: 50 mg carbidopa does not equal 40 mg prednisone. Duh.
So I was discharged on a lovely cocktail of imipenem every 6 hours, aztreonam every 8 hours, and tobra every 24 hours. The aztreonam and tobra are via intermate, so no problems there. But the imipenem? You guessed it...gravity drip! And not only gravity drip, but the thing has to be mixed right before delivery. So my cocktail quite literally has to be "shaken" every 6 hours before I can serve it to my greedy little lungs. Bastards - they're always so demanding!
And some of you might remember the whole fire and flood post from Tuesday? (Sidenote: how biblical does that sound for holy week? Sheesh!) Well yeah, turns out there are still some major de-humidifier fans going full blast 24 hours a day in my apartment to help ensure that there's no mold growth. For those wondering, obviously I am not being complacent about this - I have inspectors set up to come multiple times and I will not rest until I'm positive there's no mold in my gorgeous new apartment. But in the meantime, Sammy and I have moved into the Millennium Hilton by the WTC site. Lovely. And of course my mom has as well, so that she can help out with the infusion schedule from hell. In other words, I'm living in a hotel four blooks from my apartment, with my puppy, and my mother, and my gravity drip. All of which is just a little overwhelming, to say the least. Thankfully: 1) the hotel was sweet enough to upgrade us to a king suite when we laughingly told them the whole story at check-in (gotta laugh, there's no other way to deal with this sort of ridiculousness), and 2) the insurance for the genius who started the fire is going to indemnify us the hotel room, as well as all other damage-related expenses.
And then, to top it all off, Sunday was obviously Easter, and of course my sister and I had invited several of our "orphan" NYer friends to Easter brunch at my place - "orphan" meaning their families live too far away to visit for a weekend. My mom, my sister, and I talked and decided we would prefer not to let fire, flood, and plague (told you it was biblical!) keep us from celebrating, so we ordered a honey baked ham and all the trimmings from Whole Foods, moved all the fans into the hallway, cleaned up the place (they cleaned, I rested), and hosted anyway. So. Much. Fun. No hospital, no nurses, no beeping: just family, friends, wine, good food, and the ever-present gravity drip ;) Afterwards we watched America's Next Top Model marathon and finished the wine until we had walk back through the city lights to our king suite. Tough life I have, right?
My only other news is that I officially took 1 month short-term disability from work. Obviously for these next 2 weeks with this IV schedule I can't be at the office, and afterwards my doctor and I both agree that I need time to rest, relax, and figure out exactly how I need to move forward. I have amazing benefits at work and am lucky enough in that department that this isn't a financial decision - and I spent a few weepy moments with my mom last night wondering exactly how I got lucky enough for that to be the case. For now I have a couple of projects I am going to (gently) work on for the next few weeks as I try to wrap my health and my mind around where things are headed.
Honestly I'm not happy about not being able to work, even temporarily. And I'm scared shitless about where my disease is heading. I'm also overwhelmed with how lucky I am to love my doctor, have family who drops everything and travels across the country to help me, friends who see me at my worst in the hospital and still show up to Easter dinner even as I lie drooping on the couch, and a job that will leave me with everything I need insurance and income wise regardless of whether I am physically able to work or not. I don't need to be told how blessed I am and how rare so much of that is. It's a weird balance, isn't it? I mean how much energy can you spend being sad when so much is being given to you? But by the same token, how much of a merry sunshine can anyone honestly be in the face of losing so much? And it is a loss, I'm not going to sugarcoat that side of it. I don't think I'd be doing myself or anyone else any favors by pretending I was thrilled with the situation.
So I'm out of the hospital, but on a bitch of an IV schedule. I can't live in my apartment, but I have a gorgeous hotel suite with people and puppies I love. I had a great Easter, but I felt sick. I have to take time off work, but I have a great support system and amazing benefits. I feel better, but I'm on my third round of IVs for 2009 alone. I have a lot of drive to get better and stay healthy, but I know doing so might mean giving up some things I love - plus I'm up against a killer disease.
I feel kinda shaken, just not entirely stirred.
- 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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