I finally got my IVIG scheduled, and the first day (yesterday) was horrific. The first issue was that they wanted me to be there early for a 9:30am infusion. I usually don’t wake up until 10 or 11. Still, I figured I would just sleep it off. I’ve tended to sleep during infusions when I’m not feeling well going in. I was having tachycardia problems yesterday, but again, I just figured it would all even out once the infusion began.
Oh so wrong.
They took me to a room, and there were no windows. It was a bummer since the other rooms had windows, and I was expected to be there for the usual 5+ hours. The nurse unceremoniously cleaned my port, her sterile technique was questionable at best, but she did at least use the proper skin cleaner. I’d have preferred that she clean a larger area, and keep her actual tray sterile, but I’m pretty sure it was at least decent enough to prevent an infection…I hope. The infusion clinic is in an infection disease doctor’s office!
Then it’s time to access my port. Ugh.
Unlike other infusion places, I’m not asked if I want lidocaine first. Honestly it doesn’t bother me, the lidocaine stings just as bad as the port being accessed, but I found it odd. She pushes the needle in, and she gets return and flush. Great, right? Um, not exactly. Instead of having the wings of the huber needle flat against my skin, they’re still sticking straight up, creating a huge tent once it’s taped over. If that wasn’t bad enough, prior to taping it over, when I was explaining that she needed to bend the wings down, she pushed and twisted the needle, which hurt like hell.
You win nurse. I’m not numb, and you’re manipulating a needle in my chest.
As she’s arranging my pre-meds, she asks if I’m going to want a heparin flush after the infusion. Yeah, I’d like to keep my port from clotting, and since IVIG is a blood product, it’s generally a good idea to flush the port, even if I am coming in a few days later for another infusion. In any event, the pre-meds begin, and I’m surprised to find out that they’re not using a bag for any of the drugs. Everything is going to be pushed. I’m assured that the pushes will be slow, and the nurse makes a joke about how Benadryl makes patients feel a warm rush.
Zofran goes in, and helps my nausea rapidly. I then decide to do the steroids, figuring the Benadryl will counteract the rush the steroids generally give me. In go the steroids, and my already tachy heart increases it’s beat. Great. The nurse goes and gets the Benadryl, and as soon as she began pushing it, I panicked.
I felt like I was choking on an ice cube, and there was a warm rush through my abdomen and groin.
The warm rush was tolerable, I was expecting it, but the sudden choking sensation terrified me. I honestly thought I was dying in that moment. The feeling was so intense, I figured something had gone wrong, and my heart was shutting down. There couldn’t be another reason for such a horrific feeling. The nurse had a moment of panic because I sat up violently, and began clawing at my throat.
After laughing off the reaction, and telling me that she’d warned me about that sensation, she tells the manager that they need to use a bag next time to give me certain pre-meds. The manager said no, because it would just add to the time.
This was another issue. The nurse and the manager were arguing, complaining about other employees, and complaining about patients, all within earshot of those of us getting infusions. I was told that my infusion should have only taken 2-2.5 hours. Twice as fast as my normal infusion. We did take the full 5 hours, but we hit max rate way sooner than I have in the past. My theory is that we started out at a higher rate than I have previously. That or I had a reaction because my insurance insisted I use another brand of IVIG.
My heart rate wouldn’t cooperate.
I was already 100bpm when I arrived. I began having runs into the 150 range, so they had to stop the infusion for 10-15 minutes. (This just adds to my theory that we were already doing the infusion too quickly.) Due to the issues I had, they told me once I’d managed to finish the infusion, that I’d have to come back on Monday instead of Saturday for my second day.
That’s fun, when you’ve left a screwy needle in my chest.
Exhausted and in pain, I just wanted to get home. I padded the needle as best I could, hoping I wouldn’t move it too much in my sleep. Today I woke up, and the needle was clearly crooked, and bent forward. I knew immediately that I couldn’t keep it in until Monday without risking my port. I took a photo, and contacted my nurse manager for home health. I then called the 24 hour hotline, and they arranged for a nurse to come remove the needle.
It was really messed up.
The needle was so misplaced that I had to help stabilize the port so the nurse could de-access it. To me it wasn’t a huge deal, I’d realized it wasn’t going to be safe until Monday, and took the proper steps. The reality is that the needle was never properly placed in the port. Due to the placement of the wings, and the fact it managed to bend and twist, my port was in danger of breaking. The needle could have broken off into the port.
My nurse manager is going to contact the infusion center because it’s apparently a major issue. I don’t plan on going back after Monday. Monday isn’t something I can skip, I need this treatment to, you know, live…
Which is why it’s terrible that places like this exist.
Knowing I have to go back, because I need to save my nervous system, makes me angry. I will go back, have my chest port punched oddly without any numbing beforehand, and then I’ll have drugs pushed into my body that make me feel very sick. I’m actually afraid of the Benadryl push. It was honestly a feeling like death.
On the positive side, my gait is slowly improving. I was concerned that the nervous system changes would be permanent this time, but so far it seems like I’ll recover. I’m still worried about my port, and what damage is going to be done on Monday. It’s just something that is going to happen, and I have to trust my team to fix whatever the infusion center breaks.