Last Sunday, Darwin went up to Lansing to visit friends, and Max was at his mother's, which meant I had the house to myself for a whole day. Wow! Pretty cool! But around noon, I got a familiar pain in my left flank, and I recognized an oncoming kidney stone problem.
I've gotten kidney stones most of my life. The first hit me when I was 22. If you're unfamiliar with kidney stones, in my case they're calcite deposits that get stuck in the kidneys and eventually clump together to form rough stones. Most of them pass out of the body undetected, others grow larger and I can feel them go--it's distinctly unpleasant--and a few hang out in the kidney, growing larger and larger, until they clog everything up, which causes enormous pain. They've continued ever since, and I end up in the hospital every three years or so for a bad one. The usual treatment is to administer powerful painkillers and hook me up to a saline IV to flood my body with fluid, which usually pops the stone free and lets it pass. The painkillers make this possible without screaming. Kidney stones are considered one of the most painful, gut-wrenching events a human can undergo, and bad ones even outrank childbirth on the pain scale. (As one nurse put it, "I've had kidney stones and gone through childbirth. I'd way rather go through childbirth. At least with childbirth, you get a baby when it's over. With a kidney stones, you get a rock.")
I've had so many stones that I knew instantly what was going on. Almost all the time, the pain twinges, grows, then fades as the stone moves, and I start drinking a lot of water to wash it out. But this time, the pain grew fast, and was getting worse and worse. I finally called Kala to see if she could bring Max home from her place instead of me picking him up, then jumped into the car and drove like hell for the ER. On the way I called Darwin, who was still in Lansing, and he said he would leave right away.
By the time I got to the ER, I was in considerable distress and barely ambulatory. Inside, the security guard asked what I wanted, and I told him I was in great pain from a kidney stone, so I needed to be admitted right away. At which point, the guard ignored me and turned to a mother and son who had come in behind me. He asked them what they wanted, and gave them complicated directions on how to find and visit someone already in the ER. Meanwhile, I was standing there, panting in pain, and he ignored me. I finally limped past him and sat down at the admissions desk, to the nurse's surprise.
I managed to get through the check-in ("Did someone bring you hear?" "I drove myself." "How do you know it's a kidney stone?" "I've had four or five dozen of them. I know the signs.") and into the ER proper.
Meanwhile, the pain kept growing. It was a demon chewing on my insides with white-hot teeth. The admitting nurse went through a mess of questions, material that's already in my medical records with that hospital, but hospitals apparently can't be bothered to check their own computers. One of the stupider things is that every single person--and I mean EVERY ONE of them--asked what medicine allergies I have. It's right there on your computer screen! Just give me the pain medication.
By now the pain was making me scream. I lay there on the gurney howling and biting my arm and shouting with the pain, and I couldn't stop. I screamed and screamed and screamed, and the nurse clucked, "We'll get you some painkillers soon," leaving me to scream and scream and scream some more. The pain was so bad, I couldn't think of anything else. I wadded my sweatshirt up and pressed it to my mouth to muffle the noise, but I couldn't stop screaming. I have no idea why it took them so long to give me a shot, either. Hospital bureaucracy trumps patient need.
Finally, a nurse showed up with a pair of syringes. By now, I didn't really know where I was or who I was. I was vaguely aware of the bed and the ER curtain. All I felt was the all-consuming pain, and I couldn't stop screaming.
At last--at LAST--the nurse administered the shots. After a few moments, the pain dulled and I collapsed back on the gurney with all my limbs heavy. I could feel the tension drain under the drug.
"We need to do an MRI to find the stone," the nurse announced, and an intern wheeled the bed down the hall. I could still feel the pain, but the drugs prevented it from bothering me. A technician ran me through the MRI scanner--very science-fictional--and wheeled me back to the ER. The shot was already wearing off, and I had to ask for more meds.
"I'll put in the request," said the nurse.
Darwin finally arrived, with Max in tow. I told them what was going on, then lay there on the bed, monitoring my pain levels. It was getting steadily worse, and again I called for the next shot, but the nurse was still processing the request.
The pain shot up again, and I started screaming. I knew it was unnerving Max, but I couldn't stop. Finally, they gave me another. It lasted about half an hour, and then more pain ripped my side. Fortunately by now they'd put me on an "as needed" order, and I was able to get the meds faster.
During the first series of shots, though, my heart rate went way down. My resting heart rate is normally in the 50s because I run so much. This already made the ER nurses nervous. (The more fit your are, the worse off you become?) With morphine, it went down into the 30s. And so they decided to put me on a heart monitor and call a cardiologist.
Someone off-stage read my MRI and came in to report that I had three stones--two on the left, one on the right. One of the left ones was 8mm in diameter--very big--and it was causing the problems. The other two were 3 and 4mm, respectively, but they weren't doing anything just then.
The ER physician said I needed an operation. Using a scope, they would put a stent--a drain--between my kidney and my bladder to let the kidney drain. Once the swelling went down, which would take about a week, they would do a lithotripsy, which uses a sonic cannon to break up the stone so it can more easy wash away.
At last the pain subsided. I was sweaty and itchy and zoned out from the medication. They put me on a regular rotation--a new pain shot every few hours. The stent operation was scheduled for that evening, and they would admit me in the meantime.
They wheeled my bed upstairs to a regular room--private, thank gods--and here's where the strange ordeal began.
Because my heart is in good shape, the hospital decided I was a heart attack risk. I'm not kidding. They spent more time worrying about my heart than the kidney stones. They ordered an EKG. It came back perfectly normal. They ordered a thyroid blood test. It came back normal. They ordered a sonogram of my heart. Normal. A cardiologist examined me twice. Normal. Every single test came back normal, normal, normal. "So I can take this monitor off?" I said.
"No," said the cardiologist. "But everything is normal."
I was in pain and getting angry, as people in pain are wont to do. Every time I tried to go to the bathroom, I had to deal with wires and cords and IV lines, for example. Every test they ran involved putting electrodes on me and then ripping them off, and when you're hairy like me, it's highly painful. Once, the nurse pointed out that I had a rash on my chest, and I couldn't help snapping at her that I wouldn't have one if people would quit ripping electrodes off me. I hit the point where I was going to drop the next person who demanded a heart test out the window, but the demands finally ceased, though the monitor stayed.
And then it turned out the operating room didn't have a slot on the roster for me after all. I could 1) go home and come back in the morning; or 2) stay in the hospital and wait for the next slot, which would probably be tomorrow morning. I couldn't go home--the pain kept coming back at unexpected intervals, and I couldn't survive without the painkiller shots.
Darwin went home and brought me some stuff, and I found myself subjected to the hospital regimen. First, they wanted me to take an anticoagulant because my poor, absolutely normal heart might develop circulation problems and blood clots if I stayed in bed for all of 24 hours. Seriously? I flatly refused this one, and the staff backed off.
The food service was nice, though. They don't bring meals on a regular schedule at this hospital. Instead, you call a number, order from a menu, and they send it up. That was good. I hadn't eaten in hours and hours because I was supposed to stay away from food until the operation--which now wasn't happening. So I could eat, at least.
Darwin and Max hung around the hospital until I finally sent them home on the grounds that I was fine for the moment, and they had to sleep. I also made lesson plans and sent them into the school. You don't get to just call in sick when you're a teacher.
The bed was weird. Every few minutes, the mattress moved under me, forcing me to rearrange. This, I realized, was also to prevent blood clots. This must be the de rigeur thing to worry about in hospitals, even with patients who aren't at risk for them. It kept waking me up.
In the morning, the hospital denied me breakfast because the operation was coming up soon now. 10 AM they'd come for me. Darwin took the day off from work so he could stay with me. And then the operation was moved to 10:30. And then it was canceled outright and scheduled for Tuesday. Again, I could 1) go home and come back tomorrow; or 2) stay in the hospital and wait.
I tried not be upset. The doctor said that the weekend had been unexpectedly busy, so the OR schedule was crowded, and I tried to remember that someone who needed open heart surgery or an emergency appendectomy needed to get in right away, and I was stable so I could wait. But it was hard. The pain had abated, but could come roaring back any time, and the schedule of pain meds made me constantly loopy. I had to stay--no way I could risk going home and then having to rush back to the ER. I was also cranky because I hadn't eaten in more than thirteen hours for an operation that now wouldn't take place.
I sat in the hospital all day Monday, reading and watching videos. I even managed a bit of writing on my laptop, which Darwin brought to me. I was glad he was there, but he was also becoming agitated about missing another day of work himself. He was charged with transporting Max to and from school as well, and with bringing Max in to see me. It wasn't any fun for any of us.
I told the nurse I needed to take a shower, and she said she'd "put in a request" for it. I just nodded. I didn't tell her that I had already decided to take a shower, request or not, and if she didn't come back with "permission" in fifteen minutes, I was heading in. I don't do well with asking permission for basic functions, I'm afraid, which makes me difficult patient sometimes. But a few minutes later, the nurse came back to report I was cleared for cleansing. I took the stupid monitor off and showered, which made me feel better. Afterward, nearly an hour went by before anyone noticed the monitor hadn't been reconnected, and they sent a tech in to deal with it. One of the electrode stickers had come loose in the shower, and she reached for it, intending to tear it off and replace it. I blocked her hand.
"Sorry," I said. "If that electrode comes off, it's staying off. No more ripping. I'm afraid I'm done with that."
She managed to make it work without replacing it, and we were both happy.
My primary care physician stopped by on his rounds. I was more than a little unhappy with him. Years ago, he put me on Topamax, an anti-seizure med that also helps control migraines. But one of the nurses told me that Topamax is definitively linked to increased kidney stone formation. My doctor KNEW I get kidney stones, but he prescribed this anyway? Doing my best not to be sharp, I told him he needed to find another medication, and he said we would discuss it. Damn right we will.
The day passed slowly. Finally, they alerted me that I was scheduled for a 10:30 AM operation. But I couldn't eat or drink after midnight!
Usual protocol for operations dictates no eating or drinking only six hours before anesthesia. (This is in case the anesthetic makes you barf. They want your stomach empty for that.) When did six hours become ten and a half? But I just smiled and nodded. Anesthesia doesn't make me barf, and Darwin had brought me food anyway.
In the morning, I ate a breakfast of a contraband banana and some crackers. I had just tossed the banana peel away when the nurse came in for the morning readings.
Darwin came in to wait with me, but he hadn't eaten breakfast yet. After a couple hours, he went out to get some food, and while he was gone, the nursing team came in and announced the operation was a go, early! They rushed me down to OR prep, and here I actually talked to the urologist for the first time. (Before, I'd seen interns.) She said that they might be able to get the stone out today, depending on what happened, but there was no guarantee. Did I eat anything after midnight?
"Nope," I lied.
Darwin tracked me down and waited through the OR prep stuff, which was mostly answering the same questions over and over. The main one that got me was, "What happens to you when you take penicillin?", which I'm allergic to. Over and over, I said, "I don't know. I was tested as a baby and haven't had it since." Inwardly, I was thinking, "Does it matter? You aren't planning to GIVE it to me, are you?" I must have answered that question fifteen times.
At last, they wheeled me away from Darwin and into the OR with the surgical team. There was a bad moment when they couldn't find the anesthesiologist. It turned out he was stuck with another patient, and they had to find someone else. She finally arrived and we were able to start.
I've learned that I don't like anesthesia. (Does anyone?) The drug doesn't bother me, and I don't have bad reactions to it. What I learned I don't like is going through a major procedure that involves my body while I'm totally unaware of what's going on. I can't ask questions, I can't watch what's happening, I can't make decisions. I don't know who's in the room. I don't know what they're doing to me, and I can't stop them from doing something I don't want. I don't know what they're saying about me. This bothers me enormously. It would make me feel a great deal better if Darwin were able to watch the operation and report to me afterward what happened, but they don't allow that in this hospital.
I realized this when my gall bladder had to come out. When I woke up, I had a big chancre sore in my mouth. I mused aloud to the recovery room nurse that I must have bitten myself while I was under anesthesia. She exchanged an odd look with another nurse, nodded, and then just said, "Maybe." I later learned that I had been on a breathing tube, and the sore was from the tube. This stabbed me through. Why wasn't I told I'd be on a respirator? And why didn't the nurse just give me the information? This is my body, my care, my information, and the hospital deliberately withheld it from me. There were other aspects of the operation that I found out about after the fact, too, and this upset me even more. People were doing things to me while I was unconscious, and I felt violated and angry. Yes, I know they were doing their best to help me. That doesn't mean they can rush ahead and do it without explaining it, and then try to hide what they did. It's as if the hospital doesn't see a person. They see a lump of meat that needs to be rushed around, sliced, diced, and then rushed back out.
So I hate anesthesia.
The anesthesiologist put a breathing mask on me and injected the drugs. And then I was in the recovery room with Darwin next to my bed. No, I didn't throw up.
My memory is foggy for that first hour, but eventually I ended up back in my old room. The urologist had only installed the stent. The stone hadn't come out. A great deal of fluid and even pus had drained immediately from my kidney, she said, but the stone was too high up to come down. I would need lithotripsy later, and would have to schedule that.
This upset me all over again, and I hadn't realized how much I'd been hoping for this all to end that day until they told me I had more to do.
More waiting in the hospital room, this time for final discharge. The hated heart monitor was gone, leaving me freer to walk about the room. I was also unhooked from my IV. I took advantage of this to take another shower and strip the electrodes off for the final time. Just after that, the floor nurse came back in to check things. "And we'll put the heart monitor back on."
"No," I said tiredly. "It's not going back on. If you want, you can call the doctor and have him come in and yell at me, but it's staying off."
The nurse let that ride. For some reason, she didn't hook me back up to the IV, either. I think she forgot.
I was in pain again, this time from the stent. One third of patients don't even notice the stent. One third have small problems with it. And one third have big problems with it. Guess which category I fell into?
Going to the bathroom is a horrifying ordeal. It hurt almost as bad as the stones, and made me wonder if they had moved and clogged something up. But the stent is designed to halt clogging entirely, and to stretch out the ureter a little to make passage of future stones easier. The pain was just me being one of the third group who has problems with a stent. The urologist assured me the pain would ease and disappear after a day or two. Passing blood was to be expected. I could resume all normal activities right away.
At last, it was time to go home. I checked out of the hospital with a bagful of medications, and Max drove me home--Darwin had the other car.
At home, I tried to rest, but the stent pain was still there. Constant. Twisting my insides. I dreaded going to the bathroom, not only because the pain shot up whenever I did, but also because I never knew what I would see. Sometimes everything looked just fine, and then suddenly I'd be expelling dark red or bits of tissue. The simple act of going to the toilet became an ordeal, and I found myself putting it off (which is bad for this condition) and getting tense in anticipation of the pain. It's steadily conditioning me to avoid the bathroom, and that's problematic.
This whole thing is exhausting. Between the pain, the memory of agony, fear that it'll come back worse, uncertainty about what'll happen next, I'm wrecked. It's tiring to be scared and in pain all the time. The original pain was so bad, I break into a sweat over the idea that it could come back.
I had originally planned to go back to work on Wednesday, but Tuesday evening I was still exhausted and in pain. I couldn't work. I had to make more lesson plans before I could call in.
I shuffle slowly around the house these days. I can't handle bumps or jarring. When I ride in the car, I have to remind Darwin to avoid all possible bumps because each one sends a jolt of pain through me.
A hospital robo-voice called to request that I take a survey about my care. I hung up. I don't do surveys.
Wednesday, I slept and watched TV and ate painkillers that didn't seem to work. I compared my pills to the ones Max got after his wisdom teeth operation and discovered my pills are a much lower dosage. WTF? So I started using Max's leftover pills and that helped.
I go through temper flare-ups that I can't seem to control. I know it's because I'm in pain and because of the psychological trauma I underwent. The pain Pain PAIN still weighs on me, and I keep waiting for it to pounce on me again like an gleeful tiger. Just the memory of it makes me shake. For a moment just this evening, it looked like the pain might be coming back, and I found myself fighting off a panic attack, I was so scared.
And now I'm being tossed about the medical field like a volleyball. My primary care physician said I have to see him for a follow-up, but when I called his office, the receptionist said he wouldn't be able to see me until next week, though I could see a PA instead. "No," I said. "I need to see the doctor." "It's not required that you see the doctor," said the receptionist. "It's only--" "I have to talk directly to Dr. S-- about my medications." The receptionist scared up a cancellation and scheduled me for Monday afternoon. I called the urologist to schedule the lithotripsy, and this was a two-day problem to solve. I received follow-up calls from the hospital. Volleyball.
I taught classes on Thursday and Friday. Both days I discovered my stamina was only good for 45 minutes, and I had to reconstruct my lessons to give me sit-down time for the last 15 minutes of class. This is where being a 22-year veteran has its advantages. I can redo lessons very quickly.
By Friday afternoon, I was completely wiped. Darwin wanted to go out to eat, but I was TIRED of eating hospital food and cheap diner food and of going here and there and everywhere. But I couldn't cook, and Darwin refuses to try. (Before we married, he lived at restaurants.) Truly, once or twice a month, I would love it if Someone Else cooked a meal for me. But whenever I suggest it, Darwin only offers to bring home takeout. Marriage is overlooking the stuff about your husband that drive you crazy.
Darwin, meanwhile, was putting up with me being cranky and short-tempered and emotional. I'd been away for three days, and became visibly upset to find that no one had taken the bread out of the breadmaker while I was gone (I started a batch before the pain demons arrived), no one had filled or run the dishwasher, which now smelled rancid, no one had changed the cat box. No one had gone grocery shopping. I was trying not to be in a foul mood about any of it, but it felt like Darwin and Max had decided between them to leave everything for me to do when I got home. I doubt that was their thinking--it just didn't occur to them to do these things unless I'm there to point them out. But that's the way I felt. My emotions went--still go--all over. One moment, I'm rampaging about something small, and the next I'm huddled on the bed in tears from the pain and fear.
I have lithotripsy--breaking up the stones with shock waves--on Wednesday. Another day away from work, another dose of anesthesia. I'm scared that it won't go well, and I'll have to come back, and I'm scared they won't take the stent out, and I'll have to come back for that, too--as well as live with awful pain every time I go to the bathroom.
I have to get through this.