Oh wait, I’ve done that already! Well, now I need to do it again. I’m just coming off *another* Tower stay. Oh joy! I went to my follow-up appointment that Wed. morning (the 3rd of July), and didn’t make it home until 5 days or so later. Bummer. What a way to spend the 4th of July holiday, huh? No fireworks or cookouts or swimming or really anything fun for me this year. Just a lot of sick, fighting, testing (of the medical variety), and much blah. The one redeeming positive factor is that a good friend of the imaginary (internet) variety managed to get a cheap flight from MN and came to the Tower to advocate for me and then followed me home and got me all settled. We’d only met IRL once before, despite knowing each other online for quite some time, but it was easy and fun and I am so thankful that she was able to get here and make me feel all loved. ❤ She is leaving at o’dark hundred in the morning, back to her real life and family, and I’m going to miss the company. The best part is that many of my other imaginary friends kicked in a few bucks here and a few bucks there to help her offset the cost of the plane ticket and rental car, and by the time they were finished? All those $10 and $20 donations added up to enough that her costs were pretty much covered. *That* is even more awesome, and I have been repeatedly humbled and amazed at the goodness that still exists in the world. Sometimes.
In not so great news, this Tower stay was the worst stay I’ve ever had. It was most certainly NOT a restful vacation as I ordered. Pig fuckers. I jest, but it was by far one of the worst hospital stays I’ve ever experienced and most certainly it was the most horrible time I’ve ever had with the Tower. My doctors are freaking amazing, and I wouldn’t switch my pulmonologist for anything in the world at this point, but the rest of the staff there left quite a bit to be desired. I am not sure how much I want to go into right now, as it’s approaching 1 a.m. and I’m ready for a couple of hours sleep before trying to see my friend off (ha, what are the odds I’m going to wake up…) so let me see if I can summarize a touch:
First day pretty good, met with docs, felt super important as my pulmo finished up clinic hours and came over and performed my second bronchoscopy in as many weeks himself. After 5 on a holiday, the city was preparing for their big fireworks display. I had the nurses and respiratory therapists tell me (repeatedly) that I should feel very special indeed, as they had several bronchs to do the following day anyway and it would have been no big deal to keep me not eating and drinking all night (I’d already not eaten all day because sick) and do mine with the rest of them. The fact that he finished clinic hours and THEN came over and did it himself (I didn’t even get any students this time!) speaks volumes, and I feel like he’s doing everything right in terms of my care. Slept a lot that night until pain meds wore off, and then was hurty and unable to get comfy until pulmos rounded the following morning and changed up my pain meds and got that under control. And that is where the trouble began.
That day, day 2, my pain was well controlled and I was on a zillion antibiotics because they didn’t know what they were dealing with. The trouble began when I observed my RN diverting (STEALING let’s call it what it is shall we) dilaudid right in front of me. It was very sneaky, and requires a lengthy explanation/description, so I will forego that for now and just say that I am now 100% positive that’s what was going on. I got my meds, she diverted an extra bottle. At some point she also brought my percocet already out of the package, which is a no-no – they are supposed to open the blister pack in front of the patient so you can be sure you’re getting what you’re supposed to get. Covers her ass and makes patients happy. She brought mine in a ziploc baggie. I didn’t question at the time, and didn’t really make much note of it until my pain was way out of control. I’m on a lot of narcotics at home, so I tend to notice when a dose is missed.
Woke up on day 3 to a shower in my room – water just pouring down from the ceiling as if I were standing in a storm. Dripping and running around/down the TV, the wall, splashing all over my bed, huge puddles on the floor. It was a great way to start the day. It wasn’t even shift change, so it was well before 7 a.m. Luckily, they had an empty room next door that was simply missing a bed, so they managed to just wheel my bed and belongings from one room to the next. I fault no one for this, it’s just one of those things that happens, and really would have just laughed it off if it weren’t just another thing on the pile of shit that was this stay. In fact, I was asking people for umbrellas and telling the PCA that I wouldn’t’ be needing a shower that day since I’d already had one, and similar cracks. It was funny. Or I’m easily entertained. Maybe both.
But then they moved me off that floor, which is good as that floor is the step-down unit that requires constant heart monitoring. Moving floors meant that my HR had finally stabilized enough that I could get off the tethered monitor and put instead on a remote box so I could walk around and such and see what my heart did then. Bad news! My nurse informed me that he was leaving at 3:00 p.m. – he dropped me on the new floor at 3:10 p.m. I don’t think he ever gave report, or if he did, he gave it to someone who didn’t hear. by 4:30 I was due for more pain meds, and hit my call light, and they responded to me as such, “How can I help you, Mr. Moore?” Well, I am neither a mister nor a Moore, so this was a bit alarming. Still, I laughed. Until my PCA from *that* floor decided to come in without precautions… oh wait, need to back up.
I knew this was bound to get lengthy.
I tested positive for C. diff. on day 2, and as such was on contact precautions. Meaning no one in my room without gowning up, and I had to have my own thermometer, BP cuff, pulse oximeter, etc., for monitoring because it’s quite contagious and not something you want to be spreading around the hospital. So my PCA on the new floor waltzes right into my room without so much as a hint of a gown, and also toting the community vital sign monitoring equipment. Which she intended to use on me. And then take to the next patient. *shudder* I was luckily with it enough to tell her to go check my precautions situation before she entered, and she could not have been more apologetic and thankful. *She* was in shock that she’d almost done that, but it was not her fault at all. There should have been a notice on my door and gowns just outside, readily available. Someone dropped th ball big time.
At any rate, it took forever from there to get the crappy nurse from hell (who happens to share a name with my mother so I will never forget it) who would not push dilaudid at all and told me how I did not seem to *need* such strong pain medications because I was smiling and smiling people are not in pain. Nevermind that the only reason I was not in pain was more than likely due to the fact that I’d had dilaudid and percocet in rotation for the previous 24 hours or so. I did eventually get my meds, but she went and got another nurse to push them (twice). She was okay with the percocet, and I thought maybe it was an IV situation (like she wasn’t allowed to give IV meds or something?) but she hung my IV antibiotics so who knows. What I do know is that I had a miserable time and had to fight with her for meds every single time, and I had her for two days straight.
I fought with more nurses about the pain situation, and made them call my doc for clarification and confirmation. I guess one cannot have pain meds without a healthy dose of shame on the side. As if I do not know that I am on strong narcotics. I have said before and will say again, however many times it takes – when every single breath hurts, I honestly do not want to take the next one. If I could simply stop breathing at that point, I most likely would. It hurts *that* much. And that is not the point to come and argue with me about whether or not you think my narcotic use is too much. Especially if you are not my doctor. And extra especially when I have FOUR doctors on my case who all agree (I had 2 pulmos, the gen med admitting doc, and an infectious disease doc this time).
There was so much more that went wrong, but all of that could have been managed with my pain under control. I am such a happier person when it doesn’t hurt to breathe, imagine that. I also tend to heal quicker, as I’m more willing to let a big ole cough come through (rather than stifle it down which is what I did for several days) or do the deep breathing that is required to get over this pneumonia yet also exceedingly painful without strong pain meds. Yes, I realize people abuse them. Were I med-seeking I should hope that I would choose something other than a lung disease to fake and I would probably have much better access.
Anyway, the aforementioned friend from MN (hi S!) helped me gather all my notes from this visit and compile them in a coherent document so that when my case manager comes tomorrow i can begin the Official Complaint process. If every Tower visit were like this I would probably not even bother to go in, and that is not a good thing for my condition. But I don’t have that amount of fight left in me any more, I just don’t. Not even on a good day, let alone when I’m in the midst of pneumonia.
Oh, and by the way, my bronch grew something this time – mycoplasma pneumonia. That’s good news, as it responds quite positively to azythromycin and so I am working on another 14-day course of that. I feel so much more like myself this time around, and am pretty confident we got it this time. I’m still without my little fellas (and missing them sooooo much!!) so I can be lazy and restful all week and hopefully do a much better job than I did last week. No real plans other than a follow up with a gen med doc that I’ve not yet met on Friday. Said doc works in the same practice as my former PCP who just left and new PCP that I haven’t seen yet. Guess that was the doc who had appts available when I needed to be seen, so that’s who I’m seeing. I’m not too worried about it, I will probably only see him/her this one time and don’t need anything other than a quick check and listen to make sure things are progressing as they should.
I’m still sure there’s so much more to the story, but that’s all you get for now. You’re no doubt as tired of reading as I am of typing, so I’m off to rest for a while again. Still kickin’.
Palikari Part Two 