Life in the wild

During my last clinic appointment, I told my doctor that being in the hospital is like being in the wild surrounded by lions and hyenas and other critters intent on making me their dinner. That’s not to say the people who work there have the intention to hurt me – or eat me – they don’t. However, mistakes happen and stuff goes wrong. Some people are better at their jobs than others. The hospital can be a dangerous environment and one that requires my constant vigilance while I’m locked up there.

This appeared in yesterday’s Los Angeles Times:

USC University Hospital was fined $50,000 after pharmacists and staff gave a female patient with cystic fibrosis an overdose of medication in February, causing kidney failure and seizures. The hospital has since retrained nurses to verify prescription orders, created a new pilot program to ensure medications are administered correctly and started randomly auditing medication orders, according to a plan of correction submitted to the state. It was the first time the hospital had been fined.

My best wishes to the CFer. I’m not sure of the outcome at this time, but I hope for the best.

When I was in the hospital recently, they upped my dose of an IV antibiotic I received four times a day. However, the pharmacy kept the 30-minute timeline to infuse it on the label of the IV. Luckily, the nurses caught the mistake, as it should have read 60 minutes for infusion time. They often frowned and raised their eyebrows each time they saw it, letting me know it wasn’t a good thing. I asked them to tell the pharmacy and it took a day to get the label corrected. So, I had to watch over each dose to make sure it was infused over 60 minutes. I’m happy the nurses caught it and told me.

Back to my analogy of the wilderness. I’ve had other incidents, like a nurse telling me at 5 in the morning that they gave me the wrong antibiotic or being given a double dose during a shift change. These are just a few of the events that have happened to me at hospitals. I feel I’ve made a few saves of others by asking questions and staying alert (when I’m not knocked out from being sick).

Here are some of the actions I take during  hospital stays (please note that this is not advice. It demonstrates how crazy I am, nothing more.):

1) I use the high-strength Super Sani-clothes to clean all surfaces I might touch during the stay. That’s right. When I arrive in the room, I put on a pair of rubber gloves and clean the tray table, the phone, the remote, the the bed rails, door handles, etc. Some of the nurses who know me bring me the pads when I arrive. It’s cleaning time.

2) I check all IV medicines they give me  and when they give them to me. I look at the labels and ask questions, and pay attention to the routine. At night, I confirm the schedule with the nurse before going to bed.  There have been numerous times over the years, I’ve called the nurses to give me IVs to stay on schedule. During the last visit, one argued with me over the correct time of the dose. It turned out I had the time right.

3) I try to be proactive. For example, in isolation, I do my best to make sure everyone follows the rules about masks and gloves. I stop people from entering my room, which isn’t always easy and can lead to a hospital employee with “tude,” which I can match. Most of the time, it’s temp nurses and RTs who don’t know the rules and try to sound like they know what they’re talking about when they don’t. Processes can be difficult to train to a staff. Temps don’t always get every memo.

4) I wear gloves in the bathroom (except when washing my hands). C-diff is a killer. Literally. And if it doesn’t kill you, it can make you wish it would. I’ve had it five or six times. I’m doing my best to avoid it. I also take probiotics during the stay and after. My last stay was my best yet for digestion and bowel health thanks to the probiotics. And not contracting C-diff was my reward despite being on three IV antibiotics. I also stopped the Nexium and Zithromax to reduce the risk of C-Diff.

5) Before they remodeled and put a pulse-ox in each room, I used to watch as the nurse cleaned it with a Sani-cloth, not alcohol, and then I washed my hands after using it. Even with one in the room now, I clean it myself.

6) If something falls on the floor, it’s dead to me and goes in the trash. Are there exceptions? Sure. If I dropped my iPad, I’d clean it. Sometimes, my charging cords hit the floor and I have to glove-up and use a Sani-Cloth to clean them. But anything else, it’s outta there.

7) I bring my own Pari Sprint nebs. I hate the cheap-o nebs with the long accordion attachment. I wonder what the particle size is. It doesn’t seem as good as the Pari.

I know I’m nuts. I have other quirks while I’m stuck in a hospital. And after the last hospital stay, I dread having to go back. I’ve knocked out a lot of days there but it’s getting old having to go in three or four times a year. It was easier when I was young and didn’t care as much about living. Now with more to lose, it takes more effort to stay healthy. That’s okay, I’m lucky I have the chance to do it. At least I don’t take that for granted anymore.

14 thoughts on “Life in the wild

  1. I brought my own home IVs for my overnight before surgery. Good thing, too. They would have been more than an hour late for 2 of the 3 doses for the first 24 hours. We even brought my eFlows, Pulmozyme, Cayston, and for sure my Zenpep. I would guarantee you they would have had to order Zenpep from the outside and Cayston probably only comes in the month supply boxes, so we brought everything and only used the pharmacy for pain meds.

    Good post, man!

    • I’ve done those things too. Esp. when I was on the Cayston study. People looked at the eFlow like it was from space. I always take my Creon. I have to take other odd ball meds like androgel and symbicort, as it takes them a few days to get them to me. I should have covered the whole med part, which also includes getting the wrong meds delivered. I’ve covered it before in other posts, so I didn’t. Thanks for the comment, as always.

  2. I guess you don’t use the 10 second rule then? I can honestly say without it I would have wasted so much food to the floor!
    On a serious note, I can say that you probably aren’t alone when it comes to checking up on dosage, times etc. After all CFer’s/Parents all do these routines day in, day out and have them down to a fine art, so to have someone try to change it really get’s up my nose. 🙂

    • Sounds like we’re all the same catching this stuff. We should all pool the knowledge into one spot.

      If you were to spill a beer would you drink it off the floor? I guess it would depend how drunk I was.

  3. I don’t think you are crazy. Not for that reason, anyways. 🙂

    Pari nebs, checking doses, drop and done policy…it’s all stuff I’ve done. It’s stuff I learned from my sister years ago. Advocating for ourselves against those nurses who think they know everything or the ones who just graduated and know nothing is essential to our survival in the wild jungle of cystic fibrosis. Keep your safari helmet strapped on tight, M’boy!

      • I am making videos, but they are taking FOREVER!!! Ahhhhhh!

        PS – How is this for a nimrod question:

        After I SEE THEM read my chart: “So…do you have a Bucket List?”

      • Video does take forever.

        I can’t believe someone said that to you. You should have said, “I hope you have one because soon I’m going to kick your ass for saying such a stupid thing.” Or stick the orange guy on them.

  4. I HATE it when people actually think I’m going to stick my finger in that pulse ox when I know darn well it hasn’t been sanitized yet! I know it’s minor in comparison to some of the other things you mentioned, but it’s one of my biggest hospital pet peeves.

    A topic for another post, perhaps: Insensitive (or just downright stupid) things said by the nursing staff.

    My personal favorite is the nurse who continually makes mistakes AND says things like, “So… how long have you had CF?”

    • That’s a classic when they say that. “Let’s see how old am I? Well, that’s how many years I’ve had it, Nimrod.”

      I think the RTs were the were worst offender and probably passed who knows how many bacteria with pulseoxs. They used alcohol to clean them. I refuse to use an RT’s pulseox.

      • So do you take your own pulseox?

        As to the stupid comments by hospital staff, I doubt you can top this: Wow, you’re the OLDEST CFer I’ve ever seen!! 🙂

      • I do take my own pulseox, but it’s not as accurate as the expensive hospital one I’m going to steal one day. 🙂 Kidding.

        I get stuff like “I didn’t think you guys lived this long.”

        Still working on figuring out the comments subscription issue. Haven’t forgotten.

    • I hope you never have to go in the hospital.

      I have six nebs. In the hospital I’ll use one a day and then have my wife boil them Friday night and return them Saturday, and again Sunday. I’ve also used my Advent sterilizer in the hospital when I’ve been using Cayston in the eFlow.

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