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I’ve been laying really low since my kidney stone surgery. I still don’t feel great and I doubt I’ll feel great until they take this stent out of me, but that won’t be for quite a while so I’ve been writing this in bits and pieces here and there. The most frustrating thing about my surgery was being an add on and being told that they would call me most likely over the weekend with the time and where to go exactly. No one did that so we had to call them Monday morning.
Master let me sleep in because he wanted me to be as rested as possible since I was up all night the night before worrying. This was somewhat scary surgery to me. I wasn’t afraid of the anesthesia or the surgery itself, I was more afraid of this “stent” they kept warning me about. The PA had told me that for some people, the pain was so bad from the stent that people would call them up in tears begging them to remove it earlier, while some people didn’t notice it at all. What if I was the former? I was also warned that they were going to tape it to my leg so I could remove it at home in the shower when they told me I could, somewhere in about two weeks or so. Possibly as little as four days, and in a worst case scenario as much as six weeks (but don’t worry, six weeks almost never happens…) and I was so scared of the stent. So, not knowing when I was going to go in Master decided he was going to let me sleep in as much as possible and wake me up when they told us to go in. He called them at 9AM (as instructed) and they still didn’t know when.
I opened my eyes sometime shortly thereafter, and for some reason that is when they decided to call.
“How soon can you guys get here? We’re ready NOW.”
So, I jumped into the car with Applepig and we headed on down.
We got there, parked, and Master got us up to the surgical center. He got us checked in. It only took about ten minutes to check us in since we were already in the system.
“OK, you guys can have a seat and they’ll be right out for you.”
So, we sat down and we waited. And waited. We waited some more. Finally I turned to Master:
“Geeze: the old ‘hurry up and wait trick, huh?!”
“I guess so, Kitty.”
We were both kind of annoyed. What was even the point on hauling us down there so early to have us sit and wait? We waited nearly an hour before a nurse got my wheelchair and brought me back anywhere. Grr. They made Master wait in the waiting room while I got ready. Sometimes they do, sometimes they don’t. This time they did.
This nurse was somewhat lazy. I’ll be honest and say I didn’t really like him a heck of a lot. I had to pee after a little bit, so he let me use the bathroom. He told me that since he forgot to get a urine sample he was just going to write that I “refused” to give him one in my chart. Um not cool. I even offered to go try again if he gave me about ten minutes (I’m fairly well hydrated from all of my IV hydration I get daily). He said it was fine. I don’t think it’s fine writing “refused” in my chart unless I’m actually refusing something, but that’s just me. Ugh.
It took him forever to hook up my port to the IV too. This was annoying the crap out of the anesthesiologist, who kept wanting to give me something to relax me. I was obviously nervous after they read me the “Things that can go wrong” sheet. Side note: that was the exact moment they decided to get a blood pressure reading on me. So. Once the nurse did decide he was going to hook up my IV, he did it wrong. He couldn’t get a blood return on his first attempt so he just gave up, told the anesthesiologist that he was just hooking me up to the IV. Both me and the anesthesiologist were not OK with that. You need a blood return to prove that the port is working. You need a blood return every single time. It’s serious. We had to kind of bully the nurse into doing his job. Guess what? It only took one more saline flush for him to get it working properly. Pshhh.. Was that so hard? After that I felt a lot better and I relaxed a bit. Or, maybe it was the high dose of stuff the anesthesiologist put in my port. (He was walking around with it in his pocket eager to shoot it into my line. Ha ha ha.) I don’t remember the last time a surgery freaked me out so bad. On the other hand, I don’t remember the last time I had to have a laser inserted up my piss hole, so there you go.
My anesthesiologist already talked to me about the fact that I had Ehlers-Danlos Syndrome, and that he’d be really careful intubating me etc. I talked to the whole team of doctors and the one O.R. nurse who was going to be in there and they said they were going to be really gentle moving me around. Well, unfortunately they weren’t gentle enough. When I woke up from my surgery several of my joints were killing me. Usually when people find out I have Ehlers-Danlos they let me move myself into position on the surgery table. Not so this time. They moved me after they put me to sleep, and they put me to sleep before they finished buckling me into everything. One minute one woman was remarking about how pleased she was to see that I was wearing compression stockings already for my POTS (while buckling some of those inflatable stockings on over the top of them) and the next minute I fell asleep. When I woke up my entire rib cage was killing me. My hips. My neck. I’m not talking normal intubation soreness, I’m talking the neck joints themselves. As I type this (nearly a week later) my jaw is still having problems..) and Master is taking me to the chiropractor to get looked at on Monday. I’m sure they probably all tried to be really gentle, but the fact of the matter is I’m just really delicate.
As I was waking up one of the doctors from in the O.R. came to see me and I vaguely remember him telling me “something something difficult surgery blah blah good thing we did this.” I figured Master would explain when I was better.
When I opened my eyes I asked for Master. Only, you can’t ask for “Master.” No one will know who that is.
“When can I see Paul?”
“Not now. Soon.”
So, I did what I always do. I pestered the nurses every second until they had no choice but to get him for me.
“She keeps asking for you. And her glasses. Do you have her glasses?”
“I never asked for my glasses. I think the nurses just want me to have them. I just want you. Ok, also Applepig.”
They wouldn’t let me leave until I could pee 200 mls. That doesn’t seem so hard. I told them I had to piss right away. They said great and showed me to the bathroom. I felt like I was in there forever (they wouldn’t leave me alone) but I could not piss. I think they thought I was nervous having a nurse in there with me, but I was almost tempted to tell them that I have people watching me piss all the time. It wasn’t nerves. My bladder just wasn’t working. (A fairly common side effect of anesthesia, and also this type of surgery.) After the second time they told me maybe I felt like I needed to go but didn’t. Sometimes the stent makes you think you need to go, they said.
No. (Was my thought). I let them do their scan, anyway.
Their scan said I had 350 Mls of piss in my bladder. “Oh, I guess you do need to pee. You definitely can’t leave until you can pee at least 200 out or you’re just going to come back to the ER tonight anyway.” It made sense but I was soo uncomfortable and miserable.
They had me rest and in the meantime they gave me a dose of pain meds, which I managed to promptly spill all over my gown and sheets. Great.
They left me alone in my room with Master for a few minutes.
“They did something to my ass while I was out.”
“What?”
“I can tell.”
“I think you just feel funny because it’s all in the same area.”
“Hmmm.. Oh.. Kay..” I said. I didn’t want to argue.
While they made me rest before they’d let me try to piss again (I guess I was pretty white and I was shaking like crazy) Master dropped the atom bomb on me that I’d be having the stent for a month, not for two weeks, and that it would have to come out in clinic, not at home. Great. An entire month of that thing and no privacy for the removal. Sounds lovely. >.>
The “good” news is that the 4mm stone had already passed because they couldn’t find it. The reason I was in ridiculous uncontrollable pain though, is because the 7mm stone had actually left the kidney and was right near it (like, within an inch). There was absolutely no way in Hell it was going to pass on its own. The pain meds wouldn’t work because the only solution to my problem was surgery. The surgeon said my ureters were super small and there’s no way that 7mm beast would have passed (though it wouldn’t have for most people). He said the surgery was really difficult. I wouldn’t have had to had the stent for as long if the stone had stayed in the kidney. It’s possible we would have known about this sooner if they had taken another picture or something, but the person I had talked to at my urology appointment was kind of ignoring me when I was telling her how much pain I was in. She did get me in for surgery, but she also told me that most people work with these things. Not a 7mm stone that’s blocking off a kidney they don’t. I’ll say that much. She did just think this was a 4mm stone I wasn’t passing, with a 7mm one still in the kidney… But in my opinion if you have a patient who is in that much uncontrolled pain it is your job to LOOK AGAIN to see why they are in so much pain. It had been three weeks since my first picture. Anything could have gone wrong in that time. Something did. Way to miss the boat. They stent is in place to protect my ureter while it heals. It’s kind of uncomfortable, but no tears have been shed or anything. I can just feel it in there when I’m walking around and stuff like that. I don’t like it, and I’m way more comfortable laying on my side or back. The stent is long, about a foot!
So, I did eventually manage to piss an entire 450 mls! YAY! They let me go home. Interestingly on my take home sheet there was a list of all the medicines they gave me while I was unconscious. This included “opium suppositories.” I looked Master in the eye and told him I knew something had gone into my ass. He laughed and said that I was right. I guess I have a lot of experience with things going into and coming out of my ass. ;) They must have put that in while I was asleep. HA!
Master tucked me in surrounded by my piggies and Luke and my cow and blankies. I easily napped on and off. He made me take pain meds on a schedule for a couple days because I was so swollen and he wanted to be sure that I was OK. He hooked me up to my IVs when I got home and watched them and switched them out for me while I slept.
As with most surgeries, I had to take antibiotics for a couple of days after the surgery and this one made my vision blurry! It was awful! I could barely read my tablet or a book or anything. If you can’t sit up comfortably what else are you going to do with your time?
I feel like this is going to be a long month even though I’m not really in a ton of pain over this now except when I piss. Pissing feels like peeing out razor blades thanks to the stent. I’m really getting tired super easily, and I can’t walk long distances because of the stent. Other than that though, I’m doing pretty good. I don’t regret doing the surgery. I’m just glad the freaking stones are gone. I do have more on the other side, but for the moment the right side is clear and I’m grateful for that.