Last Monday was my surgery for my portacath. Thankfully, it was ridiculously early in the morning, so I didn’t have a heck of a lot of time to get too nervous. They were running behind and it took them nearly an hour just to bring me back to pre-op. PRE-op. That was annoying, but I survived it. I had the nurse I had a few months ago when I needed minor stomach surgery, and she remembered me!
“Aren’t you the one who passes out a lot?”
Why yes, yes, that is me. She’s really nice but she couldn’t understand why I was getting a port. I told her to help my POTS and she asks why I can’t just drink water. I told her I’m currently not even allowed to drink water because my cardiologist has me drinking three liters of Pedialyte a day. She was shocked. I wish nurses would honestly just stop grilling me about things. I have a pretty rare illness to begin with, so it’s not like I’ll be able to explain to her in the ten or fifteen minutes before I’m done being prepped why I need my port. You could always call my doctor up if you really want to know. It’s not that I mind explaining, but they just don’t get it (unless they’ve encountered POTS before) so it’s just frustrating. Like I said though, she was very nice and she even managed to get my IV in on the first shot. (She was breaking out all the tricks! Ha!)
At that point, Master and me were kind of annoyed (but not with the nurse) because we had been in the hospital for a while and not seen my surgeon or spoken with my anesthesiologist. The nurses kept talking about how I didn’t need to worry because I’d be asleep. Everyone I talked with (doctor, infusion nurses, nurses on the phone) told me I’d be asleep ahead of time, so I wasn’t nervous. I’ve had anesthesia plenty so what was there to be worried about? Then, out of nowhere, a nurse I hadn’t even seen comes back to take me downstairs.
“How come I haven’t gotten to speak to the surgeon or anesthesiologist yet?” I asked her.
“You’ll see the surgeon soon, but you won’t be getting anesthesia. You’ll be awake for this, but relaxed.”
“That sounds awful.” (I’m not the type to fake it. I wasn’t happy. Literally any one of the many people I had seen that day or spoken to prior to my surgery could have told me this. Surprises ten minutes before surgery are not cool.)
“Oh, well, we’re using Fentanyl and Versed, most people fall asleep. I bet you will too. You probably won’t remember it either.”
Having never had Versed, and also having no choice anyway, I grumpily was wheeled down to the surgery room where I did get to talk to my surgeon. He told me that I probably would sleep through it. It was not general anesthesia but most people do fall asleep. I’ve had conscious sedation before, and I slept through that, so I expected this would be similar. It was too late now, anyway. I needed my port! I told him about my Ehlers-Danlos, and he said “Oh, so you’ll have softer tissues and easier dislocations and injuries. Don’t worry, we’ll take good care of you.” That put my mind at ease a bit. It’s nice when you run into someone who has run into your illness before. I told them I also get really, really nauseous with sedation of any type (including conscious) and they told me that Versed doesn’t do that. That was also pretty reassuring. I signed the permission form and they wheeled me back into the operating room.
I only cried once. The surgeon had zero needle technique. The initial numbing shot was awful, and I had no warning about it. I stopped crying pretty quick though, it wasn’t that bad. My head was completely draped under sheets though so it was a little nerve-wracking not knowing what was coming when.
The nurse told me that she put stuff in my line and that I should be feeling relaxed soon. I was actually shocked.
Let me tell you. I never, ever want Versed again. I was completely wide awake and conscious the entire fucking time. I even TRIED to fall asleep at one point, but I was lucid. So lucid. I heard the doctor talking with his assistants about random bullshit (his favorite TV shows etc) the entire time, and I saw the sedation nurse come back and peek under my little face tent to see how I was getting on. Apparently most people on Versed don’t remember their procedures either, which is one reason they like using it. I do. I remember every little bit of it. No. No. No. I’ll opt for other types of sedation the next time someone is going to mix around with my insides, thanks. I was told I had four doses, too. I must be immune to Versed.
After I was sent back to recovery, I got juice and stuff. I was told not to lay flat for twenty four hours, so even though I just wanted to go home and sleep, that didn’t happen. I can’t sleep sitting upright. Gah. Master took a couple of pictures of me in recovery! He’s so cute. He even wanted to take a picture of my back because “It looks kind of like rope marks! Kinda!” Well, that’s what happens when you get a ton of IV fluids while you lay on an operating table in a hospital gown that’s way too big for you for an hour. Lol. Then we got dressed and went to the local piercer.
Yep, the piercer. My septum is well-healed, but I had to take my tongue piercing out for the surgery. I wasn’t sure it would even be open the five hours after I got out of there. We didn’t have a taper (because we had never needed one), and I was unsuccessful getting my jewelry back in. Master and me could both see the enter and exit holes in my tongue so we wanted to try to save the piercing before it would have to be re-done.
If it did need to be re-done we weren’t going to do it that day (I had enough to heal from), but we he already told me ahead of time that if it closed he was definitely going to make me re-do it. It’s not that I don’t want to have it, I love it. I didn’t want to be stuck eating soup for another few weeks again though! Lol! Thankfully, we were only at the piercer for about five minutes and then we were on our way (with my jewelry back in). The taper was easy, and we had made it just in time! Yay!
We went back home to bunker down. About five minutes before we made it home I started crying because the nausea was sneaking up on me really badly. I was completely pukey. Master got me a bucket and called the hospital back up, who swears “that almost never happens with Versed.” Well, I did warn you! Literally, one dose of Zofran in my IV would have prevented this. That’s part of the reason I was given an IV! Not to mention, but Zofran is cheap as fuck. So yes, we were both pissed (I’m not asking for serious drugs, here). They got me a prescription and Master drove down to get it for me.
To make matters worse, after I took the anti-nausea medicine, my neck started to seize up really badly. I went to the doctor the next morning and it turns out I had subluxed a few bones in my neck because of the way they positioned me on the surgery table. That was sort of the straw that broke the camel’s back. This facility? We were really completely unimpressed with it. They ignored nearly all of my medical problems and all the things we warned them about up front. Did anything seriously bad happen? No. I mean, they didn’t blow a vein or anything.
The port was placed properly (surgeon opted for a power port, by the way), and nobody died. We were just so annoyed that so many preventable things happened. Not only that, but lying about the type of sedation you’ll be receiving is just not the way to build patient-doctor trust. I would definitely avoid this facility if it was possible. I was pretty unimpressed with it the last time I used it too, to be honest.
Since I had more to deal with than just a power port, (sublux, extreme nausea that didn’t go away for about three days) etc, I have been having a rougher recovery time than I needed to. Sleep was almost impossible for the first few days because it was impossible to get comfortable. To make matters worse, I had a terrible allergic reaction to a muscle relaxer my doctor gave me to help my neck. We’re talking blurred vision, I wasn’t able to say the words I was trying to say, and my hands, lips, mouth, and cheeks went completely numb. So overall? This past week was not my favorite.
On Sunday I got to use my port for the first time though, and it was so much easier than usual! It’s the cutest little gauge (smaller than any other IV I’ve ever had), and it was so easy to make work. My nurse (who I see all the time anyway) was amazing and I’m looking forward to next week because this was so quick! No more looking (and failing to find) a vein. No more thirty to forty-five minutes of poking and delaying our weekend. Nope. This was so much better! I was in and out in about an hour and a half, rather than two to two and a half hours. Eureka!
So, even though I have some healing to do, and even though the procedure itself, and the after-effects were pretty awful. (I mean, come on. Was now really the time to discover a new medicine I’m allergic to?) I love my power port. I really do. It’s a bit “messy” right now, but it’ll heal up much better. It just needs time.
Funny story though? My Mom wanted to see the port, so I sent her the last picture you see in this post. “Oh, it’s cute!” she said. A few seconds later though? “Wait. Where’s your collar?” Master and me both laughed later about how she’s never called it a collar before. She usually calls it a “necklace.” There’s actually a couple stitches up by my neck that you can’t see too well in most of my pictures, but unfortunately, those stitches run right along where my collar sits. I can’t wear my collar again until it heals up unless I want to run the risk of infection. (Guess what? We don’t.) It sucks not wearing it, but it’s much more important to have a healthy slave than a dead or very sick one.