Wednesday, July 29, 2009

Pip's Tips: Lessons on How to Survive the Hospital

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.


  1. Thanks for that, I am in desperate need of some to do while its the lock up. I too always bring my own enzymes b/c they are either great about getting them to me or they really suck. Here they also have a 24 hour rule with neb cups -however they give us little white lunch sacks to store our cups in...Ill admit right now my pulmozyme cup is still plugged in sitting next to my machine...

  2. It's amazing how things so far away can be so much the same! I've had the same exact experiences. I warn people of my discharge DAYS ahead of time :)

    They just went to a new policy at my Hole in that they only switch out the mouth pieces every day and the actual neb cup about every third day! Crazy!


  3. loved it, all so true! I've also gotten to where I make a run to costco/supertarget while I'm waiting for a bed to get some basic munchies AND a flat of gatorade/water/etc;.

    That way, I can munch and hydrate to my heart's content without wasting "nurse buzzes" simply to ask for something to drink...and then having to wait for it since waitstaff duties are appropriately pretty low on their priority lists. Just a thought for next time (and others who may read this!) Glad you're getting to go home to your furchild!

  4. Piper you rock. You crack me up...and most of all, you are SOOOO RIGHT! The enzyme thing REALLY drives me nuts. I also love when they give you the wrong enzymes. Lame.

    Hoping you get outta there soon!

  5. Couldn't resist commenting on this one...had nearly the same experience with the CT scan IV only no way in hell did I let them try 5 times before putting my foot down, LOL. After getting the smaller IV in on the first try (which as we know, won't work for CT contrast), I let one other nurse on the floor try with the bigger needle, then said I wanted the crisis nurse - in my center, this is the person that can start an IV in ANYone. So it was only 3 pokes for me.

    But let me just tell you, they used my port for CT contrast once before - the CT techs bitched and moaned and whined because they had to do *gasp!* extra work, but it CAN be done. I swear, the medical model is so far removed from patient comfort it's ridiculous.

    Same experience with enzymes, too. And oddly, HTS seems to really throw the inpatient pharmacists for a loop. What? they have to do MATH?!

    Glad you're gettin' sprung soon!

  6. Hi Piper,
    Great post. I just got out of the clink so I know what you mean.

    I jsut read some of you past post and saw you quit your job. Good for you! I hope you don't mind me asking but what do you do for insurance?

    I went active while you were in Turkey. I figured it was time. So maybe we will both have new lungs before 2010!

    I hope you get out of the hospital soon.


  7. So true!!! I just got my enzymes this morning and thankfully I had them with me :) I also bring alcohol pads. Wow you guys get to switch your neb cups? Ours don't get switched :( they are stored in a bag after each treatment and that is it.

    Hope you got sprung today!!!!! Love ya!

  8. Great tips! I always bring back up meds too! But my nurses are pretty good about the enzymes. They give me an entire bottle, and I keep it at bedside! They trust me to take them when needed.

    I do the whole discharge thing too! Because before, I'll tell my nurse i'm leaving "today" and she is clueless. Most of the time, our doctors don't round until after I make sure the orders are in place the day before!

    And I've had the wrong size iv placed for a ct scan too! And after 5 unsuccesful attempts to put one in, well, they decided to let me use my port. And when I got down to CT, the doctor said that using my port was fine. So now i try to do all i can to use my port!

    Praying you get out of there soon!

  9. Piper, my hubby (CFer) fills a squirt bottle with alcohol and sprays down his nebs (esp while in the hospital) It works great!