So, in my last post, about a month ago, I mentioned I had been watching City of Vice. I had plenty of time on my hands to do this because the last week of August, I wasn’t feeling well. Sunday night, a week before Labor Day, was the first day I felt feverish and I thought maybe I was just hot and dehydrated because work had been rather warm that weekend. I began rotating between fever and chills (and I really, really hate chills) and just felt a general malaise. I called in sick a couple of days at work, had several days off in a row anyway, and then worked Saturday and Sunday of Labor Day weekend, feeling moderately alright, though I had a lump in my butt cheek that hurt. I’m fairly used to cysts and such, so, while annoying, I wasn’t particularly worried about it and didn’t really put it together with the fever at first.
Warning that the rest of this post will contain gross medical stuff. If you’re going to be squicked out by it, move on by.
Anyway, Monday, Labor Day, the pain in my ass (heh, sorry, it’s a bit funny today) got a LOT worse and I’d been feverish for a week now. I went to one of the urgent care clinics in town to get it checked out. They thought I might have an abscess instead of a cyst, prescribed me some antibiotics and pain pills, and set me up to see a surgeon the next day. I stopped where I work on my way home and let them know I’d need to be off for the surgeon’s appointment the next day at least, picked up my pills and went home.
My mother took me to the surgeon’s office the next day, and after the exam, she (the surgeon) sent me to the hospital for blood tests and a CT scan. By this point, the pain was so bad, I could barely sit, certainly couldn’t sit straight, and couldn’t lay on my back. They gave me a bunch of fluid to drink and we requested a place other than the regular waiting room as I couldn’t stand around for an hour drinking the liquid and I couldn’t sit in a regular chair. They put me and my mother in a room with a chair and a bed and we waited for my CT time to arrive. CT scans aren’t particularly painful or anything, and the surgeon actually wanted me on my side instead of on my back, but about halfway through, I got the chills (and already was under a blanket or two). I laid there hoping that my uncontrollable shivering wouldn’t mess up the pictures.
(And this is to the best of my recollection. I ended up having a second CT scan later that week and it is entirely possible that my memory is fogging the two together a bit.)
Anyway, after they put me back in the room with my mom, I laid down there and one of the nurses brought me a warm blanket. Best thing about the hospital? Little ovens dot the hallways where they keep blankets toasty and then they cover you with them and it’s like, ohhhhhhhhh. I want a blanket oven in my house for winter. I had the chills again, though, so even the warm blanket was little solace. I got a second warm blanket too, and my mom rubbed my back while I shivered and cried. I don’t think she’s had to take care of me like that since I was little.
Anyway, they sent the pictures to the surgeon, who called us up in the room to tell us that the CT didn’t really show anything useful. That I was more pre-abscess than drainable-abscess and I was to go home, continue to take my antibiotics and see if it got worse or if it got better. Not especially the news we were hoping for, but at least it wasn’t surgery either. So my mom took me home and let me rest. That day and the next, she did dishes, took out my garbage, and generally tidied up as I’d been not feeling up to bothering the last week. At one point she even brought me cashew chicken, driving well out of her way for it, and took home countless loads of laundry with her.
However, I wasn’t improving. Granted, it had just been a couple of days of antibiotics, but neither the fever or the chills had left me, and my thermometer was reading 104 occasionally, when the ibuprofen and Vicodin were worn off (they were helping to regulate my temperature as well as keep the pain to a tolerable level). Also, the flesh of my butt cheek was getting firmer; there was definitely something infected and unhappy in there. Thursday, the firm, swollen area was about the size of my hand. Mom said it looked melon-like, but I don’t think it really protruded particularly and I have a big butt anyway ;o)
This is where it starts to get gross. You can still turn back. :)
Late Friday morning, Sept 5, was when it really freaked out, though. I had woken from a night fraught with fever sweats, gross and damp and uncomfortable, so I got in the shower to clean off. When I got out of the shower, I laid on the bed on a towel to let my ceiling fan dry me and cool me off a bit. I think I checked my email while lying there, but shortly I noticed a smell. At first I thought, I just showered, what could I have missed? Then I wondered if whatever was going on with my butt had come to some kind of pimple head. I went in the bathroom and looked in the mirror. From one angle, I saw nothing amiss, just a naked butt. From the other direction, however, I saw a rather-sizeable-fist-sized bruise on the affected butt cheek, nearly black. And it seemed to be… weeping, for lack of a better term, like a rash does. That was definitely a change in situation.
Cue a little heart-racing panic. I called the surgeon’s office and stammered out what was going on to the nurse. I was directed to go to the ER right away and they’d call ahead. I got on the phone to my mother, who was already on her way over as we’d previously arranged. It was probably around noonish at this time. I told her I needed to go to the ER and tried not to cry from panic (and was probably losing that battle by this point).
When she arrived, hauling in baskets of clean laundry, I’d managed to dress in a shirt and shorts (which right now feel forever unclean and I sort of want to burn them) and ushered me to the car. I laid down in the back seat on my stomach because I was really terrified of my butt by this point and it hurt too much to even think about sitting on it. I just propped my toes up against the window after mom shut the door and told her that if we got pulled over, we could just show the cop my ass and he’d let us go without a ticket. (Little did I realize at this time, but approximately 50-60 people would see my ass over the course of the next two weeks, so showing a cop would hardly make a splash in the ocean).
Anyway, we made it to the ER without further incident, and I babbled to the nurse at the desk until she figured out what I was blathering about and that my surgeon had called ahead. (This might be a good time to mention that the surgeon’s name is Dr. Lady. She really is lovely and sweet and nice and I liked her very much. When I first visited her office and saw her name, Ping Lady, on the wall, I kept reading it as Pink Lady and thinking about the movie Grease. I blame that on the fever.)
They sent me back right away and got me into a little room where I was examined and had blood taken and Dr. Lady came down at one point. I probably had the chills again, but around here it starts getting a little foggy. I had another CT scan, and this one I had to lay on my back but I didn’t have to drink anything. That was uncomfortable to say the least. I’m not sure what it showed, but Dr. Lady decided to take me in to surgery right away, saying she perhaps overstated the facts to push in as if it was an emergency, but I really think it was. I was taken to another room to prepare for the surgery (all the rest of this time, laying on my stomach since I couldn’t lay on my back; this position defined my hospital stay) and then into the OR.
Once in the OR, I was told that I had to lie on my back again to be anesthetized (because of the breathing tube they’d have to insert). I was slightly argumentative about this because doing that freaking hurt, but they tried to make it as comfortable as possible, and quite frankly, I’d be out in a couple of minutes and not feel anything anyway.
And then I don’t especially remember anything for a couple of days. I was operated on on Friday, again on Saturday, and they had me back in there on Monday (this last was mostly a thorough check and cleaning as well as bandage change). I remember waking from the anesthesia once, and I remember not wanting another surgery on Monday and almost crying. I think I felt that I’d already survived the experience twice and that a third time was pushing my luck. I didn’t want to wake so disoriented again, I didn’t want to have surgery again. Other than those few things, the rest of the weekend is pretty blank. I’m told I babbled on about weird stuff while heavily drugged at one point, but I barely remember being conscious at all. Mom shared that she was pretty freaked out to see me with all the tubes and spacey drugs and such and that she wasn’t particularly sure I’d make it through.
Getting grosser and more bodily-function-graphic…
And thus, we move into the two weeks of my hospital stay. By this point, I had up to four IV bags hanging on my stand, something called a wound vacuum taped into my ass cheek, a catheter bag, and what I call a poop bag because I can’t remember what it was called (flexi-something?). Basically, I wasn’t to get up except for moving to the next treatment. And I had treatments to go to. The bacteria that caused the infection was apparently susceptible to oxygen, so they were treating me with something called HBO (Hyperbaric oxygen, I guess). Basically, they put you in a big glass tube, turn up the oxygen and the pressure, your ears pop for a while, you lay there for an hour and a half, then they put the pressure back down to normal, your ears pop again, and they roll you on out. For a few days, I did this twice a day, and the other nice thing about the hospital? Access to drugs. Damn skippy if I didn’t get some really good anti-anxiety meds to make this treatment possible, especially as I emerged from the haze.
You can watch movies in there; it’s wired for sound and there’s a tv outside the tube you can see, but as I was in on my stomach, I really couldn’t be entertained in this fashion. I did choose a few musicals, Annie and Sound of Music I remember towards the end, but mostly I stared at the end of the tube and wondered why an hour and a half seemed to be ten times as long. At least with the meds, it was harder to panic. As I said, I started out with this twice a day, but I was still hazy at that point and mostly remember when it was down to once a day and again when I had done my last one and didn’t have to go back.
I had the anti-anxiety meds for more than just the HBO treatments, too. The whole situation, especially in the beginning, was extremely stressful and terrifying. My mom was with me much of the time and I do recall panicking so badly once that it made her cry. Perhaps she could have used a pill, too, but I suppose they weren’t allowed to give her one.
Anyway, at some point, I’d gone through a couple of IV locations and I’m a bit difficult to stick with a needle accurately anyway, so one day they wheeled me in to angioplasty to get a PICC line inserted. Basically, they find a good vein, stick a tube in, and tape the whole thing down to give more permanent access to your circulatory system. Mine was just above my elbow, which was a bit annoying with floppy “arm jewelry” getting bent in or under my arm, but it was much easier to deal with than the traditional IV. I had those on the backs of both hands and they had trouble finding a good spot in my elbow or forearm. (My two forearm IV bruises are gone. At the end it was a race to see whether the bruise would fade first or whether I’d be discharged. The discharge won, but barely.)
Speaking of IVs, every time the tube kinks or a fluid bag empties, an alarm goes off. A shrill, relentless beeping that probably gave me as many panic attacks as anything else in the hospital. And since at one point, I think I had up to four IV bags draining into me between the fluids and antibiotics and whatever else, the alarms were goddamn frequent. Or I’d rearrange my position and bend a line and they’d go off. Or they’d go off for what seemed like no reason whatsoever. I could barely move as it was for all my tubey-accoutrements and it seemed like when I did move, a professional had to attend.
Now, as I said, I did go to another part of the hospital for HBO treatments. Generally, for this, I moved to a special trolley rather than having my whole regular bed moved downstairs. I could move, as long as I had at least one nurse carrying my wound vac and catheter bag and making sure none of my tubes got tangled or tugged in the process. I got unhitched from the IV for a while at least. The wheely bed for HBO is rather high because it has to reach the compression tubes, so I needed a step stool to get myself down from it when I returned to the room as well. I managed well enough each time, with no major catastrophes other than everyone in the room seeing my bare ass. What can I say about hospital gowns? *shrug* At least they fit, were even a little big (I’m used to everything always being too small, too tight) but with no stretch in them, they tended to be more of a nuisance to deal with than anything. However, for the HBO treatments, you have to wear a special gown, which was too tight on my arms so I just didn’t bother wearing it. I let them throw me in the tube naked, covered with a sheet or two depending on how cold I was that day.
As I get to the point in the hospital where I remember things, I remember desperately wanting to take a shower. I’m not sure how many days it had been by this point, but I usually wash my hair every day. I might skip a day when I don’t work and it doesn’t much matter, but aside from slightly soapy bath wipes the hospital provided, I hadn’t barely washed in how many days. This may have been the first Tuesday or Wednesday after my weekend of surgeries, or it may have been later, I really have no idea, and my nurse was allowed to take me to shower. She carried my pee and my wound vac and I shuffled down the hall to a small shower room. I’m sad to report that it was slightly cold, and without a good shampoo and bath poof, mostly unsatisfying. However, I managed to get there and back (during my later stay, a two-foot trip to the portable commode was sometimes profoundly exhausting) and feel somewhat cleaner.
As that week progressed, my mother spent some part of every day at the hospital, which helped me immensely. Even if I felt awful and panicky, at least she was there. As my stay progressed, I let her spend less time there, and she did return to my apartment a few times to clean things out of the fridge so they wouldn’t go bad, and collect clothes and such as when I was released from the hospital, I would be staying with her.
Really, you might want to skip this even if you haven’t gotten grossed out yet.
Also as that week progressed, I wasn’t really pooping. I’m sure no one really needs to know that, but there it is. One day I called the nurse in because I felt.. unsure of how the poop bag they had inserted was supposed to work. Was it just supposed to flow into it like the pee did into the catheter? They’d been giving me stool softeners all along but they didn’t seem to be doing anything. Was I supposed to push? That certainly did not feel right laying in bed. And if so, how hard? The nurse didn’t have much answer to my question and called to ICU, where they use these more often. I only had one because of the location of my surgery, rather than my lack of ability to get up for the toilet. I didn’t even have the catheter until the third surgery, so I apparently was getting up to pee several times a day (with assistance, I imagine) all weekend, bandaged up and whatnot. (Note: it was a bit hard to sit on a toilet seat with this because it was just, flat out, hard to sit down.)
Anyway, I needed to poop and, assured I wouldn’t injure myself pushing, got put on the commode (a portable toilet chair with arms like a walker) and proceeded to try. And pooped the poop bag right the hell out. Granted, since it was behaving more like a really annoying plug, I was glad to be rid of it. I had the first poop in days, smelly from being cooped up so long, and totally in front of both my mom and at least one nurse (maybe two). And this begins my run of having to have a nurse wipe my ass for me, because I was shaking so hard from exhaustion, I couldn’t keep my balance and wipe my ass at the same time. And due to the location of my wound and the wad of bandages right there, I couldn’t do it from a seated position.
I must say at this point, the vast majority of nurses, CNAs, and nurse techs were gracious enough to help and make certain I was clean and that my bandages remained clean and intact. I was in a bit of isolation, having a double room to myself and everyone had to gown up extra when they came into the room, gloves and a yellow gown. I could not make it to the bathroom in the room to use the toilet, though at least I was not peeing at this point yet either. I was constantly setting off my alarms and sent them for a big glass of water every time anyone checked on me. I was trouble. :) Only one nurse tech made me want to hold it when she came on duty, try to wipe myself because she did a half-ass job, and put up a fuss when she argued with me about trying to put the blood pressure cuff over my PICC line. Everyone else made me feel very cared for. In fact, I thought about sending a card thanking them because so many of the blur of faces did help, so much. I’ll have to put that on my to-do list for this week before I forget again.
As the time progressed, my wound was doing better. Because of the nature of the beast, necrotic fasciitis, they had to cut out the infected tissue because it was, in essence, dead or dying. This left me with a scoop out of my butt and they don’t stitch that sort of thing closed. They keep it open and let it close itself from the inside. The wound vac basically sucks out all the drainage so the opening can be bandaged tightly and still keep dry. There’s also some sponge in there, which freaked me out when I first saw it (there are pictures of the open wound all along the way, as well, but I don’t intend to ever look at them.) because the sponge is black and I thought all that infected blackness was somehow still there. No, that’s just the inky blackness of a bottomless (heh) chasm into my ass cheek. As the doctors checked on this (bandage changes are not my favorite because there is a lot of tape to pick at and peel off down there,) the wound seemed to be doing really well.
The problem was not the wound itself. Other parts of my body, however, were unhappy. My kidneys, in particular, were highly annoyed. Into that second week, I was apparently peeing a lot. Like, the nephrologist looked at my chart and asked if it was a typo. Someone half-joked that it might just be a record. At this point I still had a catheter bag going so it wasn’t like I personally had to get up to pee every hour or anything, but they had to empty it nearly that often. And of course, they tried to replace most of the fluids I was losing, which gave me more to pee out. It was an exhaustingly endless cycle. But it was common that the kidneys would be annoyed by the antibiotics, the infection, the fluids, the dye from two CT scans, and every other stressor I had going on. And by this later part of the second week, my blood pressure had also started to rise (all this plus the added stress of ‘I’m still not out of here yet?’).
So these things kept me in even longer. More tests, more tubes, more shots. At this point, I’ll add a few things about shots. When you’re laid up for as long as I am, they give you shots to keep you from getting blood clots. Three times a day I had these shots, which burn most of the time, in my belly fat. A couple of times, they made me bruise rather spectacularly, and because I was there so long, it got hard to find a spot that wasn’t either already poked or bruised. They also have you wear these leg pumpers for this reason, which I think feel rather nice, but mine always slipped down and it was one more thing tying me to the bed and making it hard to even turn over or shift. By the end of my stay, I’d barely wear them because I couldn’t stand to be tied down with yet another thing.
I also rejected “the octopus” as early on as I could. When you’re on certain pain medications, they like to make sure you’re still breathing. So I had one of those nose tubes with oxygen. Which would have been fine, but mine had a little protrusion that hit my lips to make sure I was exhaling as well. If it moved too much in the night or I was eating or something, an alarm went off. Because I needed another alarm in my life at this point. There is also a bed alarm, meant to make sure people aren’t falling out of their beds at night, or getting up unattended when they might fall on their own. I found this out one night late in my stay when I woke up desperate to pee, called the nurse tech but couldn’t wait to get on the commode and got off the bed only for a freaking piercing alarm to go off, bringing several people running to my room. I was afraid to get up alone the rest of my stay, though I doubt the bed alarm was on after that. (Sometimes they just activate all of them, apparently; one night someone was constantly setting his off all night long, running the nurses ragged, but for some reason his was required to be on.)
Hmm, so to coalesce things in my memory, at one time I would be tethered to the bed by leg pumpers, the octopus, 1-2 IV lines (I had two inlets in my PICC line), wound vac and catheter. It’s amazing I could move at all. Oh, and talking to my mother, she added that after each surgery, I would also have a blood pressure cuff on permanently for about a day as well, though I don’t remember that at all.
Eventually my blood tests showed improvement in my kidneys and, while I was still peeing a ton, they decided I could lose the catheter bag. I was both happy and sad to see it go. It was easier to not have to get up to pee all the time, especially if I was still needing to pee as much as they said. However, it was one less tube to deal with. And, as I told one of my friends who visited when I was fresh off a highly medicated bandage change, it is supremely weird and unsatisfying to poop but not pee also. They took it out and I had to pee almost every hour at first (though the first time I sat down, I felt like my body had forgotten how and I wasn’t sure I could do it!). Gradually, the frequency and amount dropped, and I wasn’t getting quite as much fluid anymore, and the numbers (eventually) improved. Still, it was a lot. Some days, three or four doctors would stop by in the morning, chat about my wound or my pee or whatever, and that would be it. Pretty much every time a nurse came in for anything, I’d pee, plus having to call them.
The last couple of nights, I became miserably uncomfortably hot. I’d wake up feeling sweaty in a line around where my body touched the mattress. I was finally feeling the awkward reflection of heat off the plastic mattress, even through the sheet and mattress pad. It is hard enough to sleep in the hospital, with the various alarms, the wound, the tubes, having to pee, being checked on in the middle of the night for blood pressure, blood sugar, temperature, etc. Someone brought me a fan, opened the window, but it only barely helped. And then in the morning I’d be cold and clammy so they’d have to bring me a warm blanket before breakfast. I was long past being there and my kidney stuff and blood pressure was dragging it out to the point I felt I’d never get to leave. My mom told me at one point that she DID actually see people leaving the hospital… though they usually had new babies with them. Ha. Ha. :/
My blood pressure was probably rising due to the fluid amounts, the stress of being there so long, and who knows what else. Over half my stay, it was firmly in an excellent range, not even the high end of normal, but right near the end it just spiked. They put me on medication for that as well as whatever else they put in those little cups. I swallowed most of them down with indifference, though initially I fought the anti-anxiety meds and pain meds because I didn’t want to make my liver freak out as well. I just wanted to go home. Or home-ish, since I’d be staying with my mother. I wanted a shower. It had been more than two weeks since I’d washed my hair and I felt like the first thing I would do when I got out was stick my head into the sink and make my mom wash my hair. It was like someone had poured congealed fat from the fridge over my head and rubbed it in. It was so gross. I couldn’t shower because of the bandages. (At home, I can shower just before I go in for bandage changes because then if they loosen, it won’t matter because they’re going to change them all in a few hours anyway.)
Most of the hospital stay has started to fade from my immediate memory, to ooze together in a hazy smear of HGTV episodes, watching the leaves change color in the trees out the window, countless trips to the commode (and the cheering when I was finally unhooked from my IV and could actually use the bathroom!), medications, dozing, hospital food (some things were quite tasty, yay for Thursday hamburger night), what seemed like hundreds of nurses, feeling resignation as all of them and my mother watched me pee and poop just a few feet away and in full sight, frustration and anxiety and stress and exhaustion.
But finally, the ordeal was over. My mom was a bit frustrated at how long the discharge took on Monday afternoon, but I didn’t care as long as I didn’t sleep there that night. I’d been in two weeks plus nearly three days and I just wanted to get out. I got my prescriptions, my last bandage change as an inpatient, my instructions, my PICC line removed (which honestly kinda terrified me, but I didn’t really feel it and it didn’t bruise any more than the IV sites did), my portable wound vac (the hospital one was four times the size and unbalanced me too much to carry it myself even a few feet to the bathroom), and a ton of the odds and ends that mom collected from the room that would just be thrown away anyway. I was finally rolled out (first ever ride in a wheelchair, extra pad on the seat) around five that evening. It was a lovely day out. We stopped by Target for my prescriptions (with my scraggly hair, sweatpants, no bra, shirt and bedroom slippers) and went back to my mom’s. Contrary to my own opinion, by this time I was too weary to actually deal with the sink and my hair. We had chicken nuggets from McDonalds for dinner and that made me just ecstatic. I took my meds and tried on one of my new nightgowns mother had gotten me while I was in the hospital, and went to bed.
We did do the sink-hair thing the next day, after cutting off about three inches of hair. I keep it longer in the summer so I can wear it up, but I figured if it was short, it would be easier to deal with. I washed my hair twice, until the suds were super foamy and my hair squeaked when it was done. Maybe not hair-healthy, but it finally felt clean. I learned how I can sit, so long as I am in a loveseat so I can lean on my side so as not to put pressure on my wound or bend the tubing of the wound vac. I figured out how to sleep so that I can keep the machine plugged in overnight (it has a pretty good battery life, but when sitting around the house or laying in bed I keep it plugged in. I haven’t had any horrible mishaps with it yet. :) I even figured out how to shower, with the machine sitting on a chair covered in a towel just beyond the curtain, keeping the machine dry and the bandages from not getting so saturated that they loosen.
My stamina has also improved even just in this week of being home-ish. When I first left the hospital, even getting up to go to the bathroom might result in heavy breathing and a need for a long swig of water. That first shower required a half-hour rest afterwards. Mom has tried to keep me up and about when possible. We stopped by my apartment to pick up more clothes one day, she took me to walk in Plamann park yesterday (though we didn’t go very far at all), she let me trudge around in Target that first day even, though I did have to sit down after ten minutes. Today I walked around the cul-de-sac where they live by myself, and while I felt ready to sit afterwards, it was mostly that it was warm. Going to the bathroom or to the kitchen for water isn’t a problem, except for remembering my machine and making sure my cord isn’t tangled. Definitely not up to being on my feet for a shift at work, but a far cry from shaking from exhaustion from simply getting up and sitting on the commode a foot from the bed. So it shall improve with time.
The best thing I can say is that the pain I feel these days is not even on the same scale as the pain I was in at the beginning of the month. I have a prescription for Percocet but the only time I take it is before a wound bandage change, mainly because pulling off the old bandage is a bit uncomfortable and then there’s fitting the sponge and re-taping everything. That’s just easier medicated and relaxed, and I have to do that whole Lamaze-method breathing a whole lot less when they’re picking around the edges. I’m not super comfortable sitting, but I shouldn’t really anyway because of the tubing, so if I lean the right way, it’s perfectly okay for a while. I managed to play two and a half rounds of Yahtzee before my hips ached the other day and I had to move around. :)
I’ve included everything I could remember about this last month, as much as possible. If you’re still reading at this point, congrats, you deserve a medal because this was long and horribly detailed at points. Mostly I just had to get it out of my own head, whether anyone wants to read it or not. Also, I just really needed to write something, as I haven’t written more than a sentence in over a month. I “sat down” the other day to write about this but I just didn’t even know where to begin and ended up putting away my notebook. I have a lot of other issues, both related to this and not, that I may be discussing in future posts, but hopefully things will start to work out.
I’ll end this thanking Amanda especially for the flowers she sent to the hospital. They are lovely and they’re still blooming in the house. I’m not sure if anyone watered them in the hospital, but they held up very nicely and are still looking great. :) Thank you to everyone who sent cards, they were very appreciated. I especially liked the card Carol found, with a bandaged turtle (love turtles) and a sentiment akin to getting better slow is fine as long as one gets better. They all made my day. And mostly thanks to my mom, because while you often drive me kind of crazy, I know that you worry to an almost hysterical frenzy about me. You were there for me in the most important ways this month, even though I know it was incredibly hard on you, and I do appreciate it even if I find it hard to show it.