On the 11th I had my port placed. It’s funny, I’d spent months wanting it, but when the time came, I totally panicked. The idea of a catheter, just hanging out that close to my heart, suddenly had me second guessing my decision. The fact that some doctors were on board with the decision, while the others weren’t, didn’t help matters. In pre-op, the nurses couldn’t get a vein, so they called the IV team, they used an ultrasound, numbed up my arm, and went after a deep vein. The nurse told me that my veins are really small, and apologized for having to work hard to get into the vein. She also said I would be happy with my port.
I had to be at the hospital at 6am…but when I arrived, I wasn’t on the schedule. I hadn’t really slept the night before, so I ended up falling asleep and was taken to the pre-op area at around 7am. I still wasn’t on the schedule, but they said I’d go back by 9:30. 9:30 came and went, and at this point my anxiety is screwing up my vitals. The lowest my heart rate got was 99 bpm. My blood pressure was a mess, too. I didn’t end up going back until 1:30. By then, I was a mess. I’m begging for the versed, and worried that I’m going to just back out of the entire thing. There was a miscommunication between the nursing staff and myself. Basically I hate pain killers. They make me vomit, and I just don’t like the feeling as they wear off. Throwing up, shaking, cold sweats, it’s a disaster.
For some reason the nurses wrote down that I had a low tolerance to both pain killers, and versed.
After several syringes, the frustrated nurse told me that I had a really high tolerance to versed, not a low one. I told her that I knew that. That’s when I found out, basically, that I hadn’t been given enough of either drug. I was a bit loopy, but totally coherent. The doctor started, and I hadn’t been told we were starting, and I felt pressure and blood.
It isn’t pleasant to feel your blood trickling down your neck.
The procedure went well, thankfully, and I went home, but panic was immediate. Every move that I made caused my neck or chest to twinge. I kept worrying that the catheter was going to stab my heart. I kept worrying that I was going to get a blood clot and die. I still am worried about the port, especially the blood clot issue, but I’m realizing how necessary it is. I haven’t had my infusion of fluids and vitamins in over a month. I am going in on Monday. It’s still scary to think about my port being accessed, but I need to get used to it.
I think part of the stress of the port, is feeling like I’m more sick. The port is going to improve my quality of life, but having it makes me feel like I have, “sick girl,” stamped on my forehead. If my gut wasn’t messed up, I wouldn’t need it. Well, I’d probably need it eventually for IVIG, but I’d have a while at least. Nobody will see it once the wound heals, unless I have it accessed, but it’s just a stressful situation for me personally.
I’ve met people online who seem to want to be sicker. They want the feeding tubes, the ports, the wheelchairs, and I just don’t get it. I’d love to fade into normalcy. I want a job. I want to drive. I want to go to a restaurant and eat something. I want my dogs to just be dogs, not dogs with jobs. At the end of the day, I can get back to most things. I may never be able to eat normally, but that’s okay, that I can work around. I would love to get IV fluids regularly.
Maybe it isn’t about getting back to how I felt before getting sick, but about learning to find ways to enjoy life and be happy with the life I’m living now.