Lesson 1) BYOE (Bring Your Own Everything/Essentials/Enzymes)
Hey, life in lock up is rough, we all know that. Why make it worse by not eating? Today (day 3 of hospital admission, although to be fair only my second FULL day), my nurse did something surprising and unexpected: she gave me enzymes with my meal! Granted, the enzymes have been ordered since day 1, and I've asked for them on a daily (well, make that 3x per day) basis, but today they suddenly showed up. At breakfast. And dinner. Not so much lunch, though, and definitely no extra for snacks. And yet, here I sit, fully fed and not on the toilet.
Nope, I'm not superwoman (ahem, well, I mean, not for that reason anyway). I just know from experience that self-medication is often necessary in the joint, and like a good boy scout, I've learned to be prepared. For me this means having "back-up" supplies of any med that I might be uncomfortable without or which might be time sensitive. My personal "big three"? Enzymes, xopenex inhaler (for those days when
morning" nebs come around 1 pm), and most recently ativan.
Lesson 2) If the peripheral IV that the nurse is inserting is for a CT scan, make sure s/he KNOWS it's for a CT scan
This one might seem a little strange. After all, why wouldn't the nurse know what the peripheral IV was for, since you clearly already have a port/PICC/whatever else delivering your antibiotics? And why should it matter WHAT the IV is for anyway? An IV is an IV is an IV, right?
Sorry, cyster, and not so fast, fibro. Turns out, CT scan IVs require a larger-gauge needle, perhaps because the contrast dye doesn't go pass through the smaller gauges well. I'm unclear on the technical details here, probably because everything was feeling a little fuzzy after the IV nurse inserted (and subsequently blew) no less than 4 peripheral IVs in my arm in less than 15 minutes. He then properly inserted and did NOT blow a fifth IV, which fit snugly into a cute little vein in my hand. Alas, it was not to be, because as he left the room he commented on my uneaten lunch and I explained I was NPO before the CT scan. He immediately turned around, got a really pissed-off look on his face, and removed the hard-won IV from my hand, explaining that this particular IV would not work for a CT scan and no one had informed HIM of the need for a large-gauge needle. Whoops.
I felt for the guy. I really did. He inserted (and blew) one more IV before giving up entirely and calling in another IV nurse, who managed to outfit the inside of my right wrist (right under the thumb) with the least-convenient IV ever. But I'm not complaining. Never. Not my style.
Lesson 3) Become Master of Your Own Discharge
My doctor told me this morning that I could leave tomorrow. Since then, I've been telling everyone who will listen (and some who clearly didn't want to) that I'm out of here as soon as possible tomorrow, preferably by early afternoon. And no, this is not because I'm some sort of evil, demanding, devil child who will do anything to force her way out of here and back to a working shower. Not at all. It's just that I've done the discharge dance enough times to know that things get scheduled for the day of your discharge, and then you have to wait. So why not tell the CPT guy in advance that you're scheduled to leave so he doesn't leave you for last? Why not inform the nursing station so they can make sure to get you your morning nebs extra early? In short, why not (politely, of course) bring everyone onto the same page, so you don't get stuck waiting on some last minute test or x-ray that just didn't get on the schedule in time? So far tomorrow I know I'm in for an echocardiogram before I get to break out, but my nurse has promised me it should be early in the morning. And of course if it isn't I'll wait patiently (thanks, Ativan!), but wouldn't it be great not to have to?
Lesson 4: Neb Cup Sanitation -- Piper Style
Don't know about you guys, but at our hospital we have a one neb cup per med per 24 hours rule. That basically means, fr things like HTS or xopenex, that they get used 3-4 times before they get switched, and in between that time they're sitting in the hospital room, exposed to hospital air.
Or are they?
Step 1: Receive and label neb cup (this one's for DNAse)
Step 2: Remove glove from box of sterile gloves that should be near the door of EVERY CFer (so nurses, etc, don't spread germs from patient to patient)
Step 3: Place glove securely over mouthpiece and top of neb cup, thus minimizing exposure of neb mouthpiece to hospital air, and ensuring that nothing will get into the cup of the neb through the top openings
Voila. Okay fine, it's not how your mama used to sanitize your nebs, and it's certainly not foolproof, but ask your nurse for a clean basin lined with plastic to place these babies in once they're covered and you can be relatively secure in your neb-cup safety. For 24 hours, at least.
And there you have it, tips for surviving life in the leper colony. And hopefully something to make you smile while you wait for those discharge papers to be written 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.
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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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