Well, I'm home! Back to my apartment, my much-missed windows (currently coated with a not-so-much-missed rain, but what can I say -- even drizzle looks gorgeous against the New York City skyline), my favorite junkie snack foods, my bed, and, of course, my adorable Sampson. Best of all, I've been home for three days already and, while we did have one small scare due to a nasty fevers and nausea combo pack that sent us back up to Columbia Pres for a pow-wow with my amazing team and a possible admission, I dodged that bullet with only some blood draws and a promise to spend a lot of time putting hot compresses on my much-abused arms. So that means we're now facing my first weekend home from the hospital since . . . well, since it was actually summer.
And yes, we're all quite happy with the situation, thanks for asking.
My dad is here now because he's been making a very admirable effort to be out here as many weekends as possible, given that now both his daughters AND his wife more or less reside here full time. It's so awesome to have the whole family around, to be honest. When I'm sick, it just makes me feel safe and cozy to be surrounded by all these people taking care of me. And when I feel better, we get to enjoy the city as a family, walk the dog, or Erin and I go out and live our normal lives and leave my parents to get a little, um, alone time. After all, that does seem only fair when your spouse of over 35 years lives in another city halfway across the country.
So anyway, my dad's out, and he's actually brought with him a little toy: one of his old mountain bikes. Now, first let me explain that growing up in Colorado there were a couple of things my sister and I were doing from about age 2, and the top slots on this list were skiing and bike riding. It's just a Colorado rite of passage, I guess, kinda like turning 16 and immediately learning how to control your car in a white-out blizzard, or going to your first Broncos/Rockies/Nuggets game and learning what it means to unconditionally love something that will continue to break your heart. Repeatedly. It's just something you learn to live with.
So I wasn't really surprised when my dad turned up at the apartment with a lightweight, dirt-encrusted, spike-wheeled mountain bike to be the partner of the heavy-set, stylish city cruiser bike (with a basket for Sammy of course!) that my mother and I had purchased a couple of weeks before. Nope, I had expected that the day would come when my family would transplant at least a little of our Colorado-ness to the urban mountains of New York City, and a mountain bike seemed the perfect way to meet that expectation.
I just didn't expect to (nearly) fall off.
In my defense, I was riding the city cruiser, on a Manhattan sidewalk, WITH the (very nervous) dog in basket. I was definitely multi-tasking, simultaneously playing the roles of the apologetic rude pedestrian misusing the sidewalk, the overly protective dog mama comforting her rather stunned little guy, and enthusiastic Coloradoan anxious to feel the wind in her hair after a good four to five years without any reason or excuse to ride a bike at all. A strange combo, sure, and one that I can assure you nearly killed me, my puppy, and several unsuspecting New Yorkers out for a stroll, who were, perhaps, accustomed to dodging tourists in Times Square but were far less prepared to dodge wobbly bicycles on Canal St.
It was a beautiful, slightly horrifying moment. The good news being that I, my puppy, and my bike all made it home in tact and surprisingly un-traumatized.
All that was, of course, several weeks ago (back when it was actually summer, and pre-hospitalpalooza 2009), but it's been on my mind for the past couple of days, and for one very legitimate reason: for the first time in 9 years, I have a PICC line. And I have to re-learn how to ride it, so to speak.
To be honest, I thought it would be really easy, kinda like the mistake with bike. I remember PICCs as being relatively unobtrusive little buggers, something I chose to do away with more for the convenience of the port than because of any inherent flaw in the original product. And then my port finally went kaput after 9 years (and by "kaput" I mean "got infected and had to have two attempts at surgical removal, both of which were unsuccessful given that the thing has attached itself to my vein in my upper arm and flat-out refuses to leave") and I was left with no option but peripherals and PICCs. Needless to say, after the 14th infiltrated peripheral (leading to two infections), I was more than ready to give the PICC the old college re-try.
And so far it's been great. Really. I mean, forget about the fact that the supposedly 15-30 minute procedure with IR to get the thing in ended up taking three hours because my veins are particularly small and unwilling (they had a lot of these things in the pre-port years), because after that I've had no problems. And for that I count myself REALLY lucky, because apparently in the past 9 years I've become something of a PICC idiot.
Yesterday at clinic I was scolded for not wearing a proper "sleeve" over the PICC, although I had managed to secure it so that it wouldn't be pulled out, far more than I ever would have done with my port tubing. Nope, apparently that's not enough, I was told, and vague memories of some sort of mesh, tube-sock-like material came rushing back to me. Oh yeah. Next I was asked when the dressing was changed post-insertion, and I told my doctor that I was under the impression I had a week (standard dressing change time for a port access). Wrong again. The PICC, I'm told, requires a dressing change within 48 hours of insertion, after which one can resume a weekly schedule. Huh. Well, live and learn.
There's a few other weird features of this PICC, if you ask me. It definitely looks different from the old PICCs I remember as a teenager. It has no clamp, and I'm not sure if that's a new feature or just something I got used to with the port tubing, but it sure feels weird to me. Even the dressing used is different, with a sort of slit in edge of the tegaderm to allow the PICC to pass through. I don't know if any of this is standard, but I know it's all pretty new (or new again) to me.
I guess the next few weeks will tell if having a PICC is truly like riding a bike, but so far I have to admit that I see the similarities. You can grow up with it, hold onto it as long and as hard as you can, but there will probably come a time when you decide to move onto something else for a while, be it out of necessity or just plain choice. And then someday you might find yourself suddenly faced with the prospect of trying again, despite the fact that it's been years, and everyone (your CF doctors or the pedestrians on Canal St) is going to expect you to be able to handle the reunion, for your own sake and for theirs.
And you will handle it all, eventually. Because a few wobbles and even a sudden gasp or two are just fine, so long as everyone gets home safe.
- 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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