I am sitting in the thick of a vast, foreign jungle.
No, not literally, of course (though that would probably be more fun). The truth is that I'm just hanging out in the Medical Intensive Care Unit (MICU) of my hospital. They moved me down here for a desensitization that, thankfully, went off without a hitch last night -- thus leaving me one of the very few fully alert and conscious patients in here. I'm not complaining, by the way.
I have -- also thankfully -- only limited experience with ICUs in general, and definitely never have I felt so much like myself while in one, so needless to say I was curious. What is this strange underbelly of the hospital like, anyway? What are its customs, who are its people, and how exactly do they expect non-bed-ridden patients to use the toilet? Wracked with these sorts of questions (and labeled with a decade's old allergy to sulfa drugs) I decided the time had come to explore this relatively uncharted territory. And for those of you who might someday dare to follow me, whether by necessity or to satisfy your own super weird need to see it for yourself, I present "The Conscious Guide to the ICU."
1) There's no harm in asking.
Nurses and doctors say a lot of things, and generally patients are expected to ingest whatever is said and acquiesce to any requests while simultaneously absorbing important information. For example: "I need to put a heart monitor on you to make sure we can track any cardiac reactions to the drug, so if you could just remove your clothes and put on a gown we can get started." The nurse said that to me yesterday, and then she turned away and started playing with my IV pump. I didn't question the first part (the whole point of the ICU is, after all, increased monitoring), so I just asked two simple clarifications: what cardiac reaction were they looking for (answer: anything abnormal whatsoever) and could I continue to wear my own pants? She was surprised at the last part, but then shrugged. "Sure, I guess. There's no reason you have to change fully, it's just sort of standard in here." Bingo. Having your own clothes on makes everything better and less, um, uncomfortable.
2) Get creative.
The ICU is a lot of very wonderful things. It is a place of caring -- intensively, even. It is a place of healing. It is a place where you can lie awake at night (assuming you're clever enough to figure out when it IS night, since the lighting in here never changes) and be gently rocked to sleep by the sweet symphony of varied beeps and the whispery flush of a sink toilet. Heck, it is a place of sink toilets, and that alone should tell you just about all you need to know.
What the ICU is not, inherently, is a place of great humor. This makes sense, seeing as most of the people in the ICU are there for something serious, and are appropriately sad. If, however, you are not there for something super serious and/or you would simply prefer not to be sad, it can be helpful to supply your own humor. Examples that have worked for me include: shocking the ICU doctors by engaging them in any form of non-medical conversation (I spent 15 mins discussing the Comanche Tribe with some poor guy, after which we segued seamlessly into Kim Kardashian's ridiculously large engagement ring), playing "ICU -- Do You See Me?" with people walking by your room and staring in (basically involves matching their curious, concerned expression and staring straight back at them in an intense and pondering fashion as they walk past the glass), sketching designs for a better hospital gown, and pretty much any activity involving the aforementioned sink toilet. Bottom line: you have to at least TRY and keep things in perspective, and nothing is too silly or too stupid if it helps get you there. After all, you're not dead, it's not the end of the world, and even hospitals can occasionally be funny. I promise.
3) Stay active.
"Active" is to the ICU as "good" is to hospital food -- which is to say that no sane person would ever use the two in the same sentence. I get that. No one is suggesting you run a 5k in the hallway and, if your hospital is anything like mine, you might even find yourself significantly hindered in getting out of bed at all. So far in this stay I've stood up exactly 3 times -- each to visit the . . . um, sink. Nothing else is allowed.
So do what you can and what you feel up to, within reason. Swinging your legs, stretching, ankle circles, kicking the person who wakes you up at 4 AM for a chest x-Ray (it happened) -- these are all great forms of ICU exercise. Jumping jacks on the self-inflating, bedsore-reduction mattresses? Probably not wise. But I know for me personally a lot of my frustration in hospitals stems from feeling helpless and/or disempowered. Movement helps with this, and it helps with pain, and it helps keep me relatively strong so that I don't get discharged and find myself unable to walk and enjoy my new freedom. So it's worth it, plus it looks impressive.
4) Patience is an (overrated) virtue, darling.
Yes, I know you want to be a perfect patient. You want all the nurses and doctors and orderlies and that guy who empties the sharps container to love you -- and well you should. You are, after all, a lovable group. Plus being kind is always a bonus. But there's a difference between being kind and being invisible, and in the hospital it can sometimes feel like a fine line. Keep in mind that there is a LOT going on around you at all times in this place, even if it feels to you like very little is getting done. In an average hospital you're probably competing for everything -- from an available bed to a slot for a procedure to your nurse's attention -- with a minimum of 5-10 other people. I discussed with someone yesterday how every hospital process takes a ridiculous number of steps, and of course any patient also knows that there is always a limited window of time in which to get something done before you are inevitably trapped for yet another day in the hospital. I like to imagine a large herd of hippos with only a small pond of water that replenishes each day.
Guys, be the hungry hippo. Or the thirsty hippo. Or whatever. Just figure out a (nice-ish) way to stand out from the crowd, and figure it out soon. Case in point, I am now asking my nurse very sweetly every single time she comes in my room when I am going to be leaving the ICU to go for my PICC placement. And when I do finally go, and get back, I will begin asking (with equal frequency and equal sweetness) when I can go home. I will not be mean, and I will not take her away from her other duties, but I will insist she prioritize my case, too. And at the end of the day she will probably still like me anyway -- though if she doesn't I guess I'll never know, seeing as I'll be at home.
And last but not least:
5) Keep your eyes on the prize.
You know why you're in here and what you're fighting for. Use it. Seriously. Yesterday I forced Ben into a 10 minute conversation about random NYC restaurants we have yet to try. He thought it was super boring; I thought it was a lifeline. I'd talk about the weather right now, quite seriously, just to remind myself that outside these walls it is hot, and people are outside, and they're riding their bikes and walking their dogs and kissing their lovers and laughing with friends and thinking that maybe they'll go out for a glass of wine tonight before dinner. I love these people. They are my friends, my family, and my fellow NYers. I love that they're out there, living. And I can't wait to rejoin them in that universal activity.
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- 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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