My first IVIG infusion (since a series of 3 in early 2015) starts in about 3 hours. I am not nervous because we have a solid plan in place to minimize side effects, and whatever is going to happen, will happen. However, many of my family members still worry about how the first infusion will go; I developed aseptic meningitis the day after my first infusion in 2015. To help out with that worry, I will post updates on this page throughout the day today, and after waking up tomorrow. Doing it this way means people who want updates can easily find them by bookmarking this page, and people who don’t want them won’t be spammed by tons of notifications.
Since my own mother said she hadn’t planned on texting me for updates because she didn’t want to bother me, it is probably worth mentioning that texts are welcome. 🙂
10 AM: The nurse is running a bit behind because of the surprise snow and ice we got overnight. Stretching while I wait for her to arrive.
11:45 AM: So far so good. The nurse seems great. My friend sent me beautiful flowers which arrived right before the IV was placed – perfect timing! Blood was drawn, half a liter of saline was infused, and we now have the IVIG infusion rate up to 50 mL/hour which is where it will stay until the end of the infusion. Since the infusion is 300 mL total, I will be done in about 6 hours.
1:30PM: A little dizzy and a little nauseous when I tried eating, but otherwise I am totally fine. I am watching “The Beginning of Life” series on Netflix because I loved the full documentary – watching babies is lovely way to pass the time!
6:30 PM: All done! It went well and my nurse is excellent. I am not currently experiencing any side effects – hopefully it stays that way! I will check back in tomorrow. Thanks everyone for all of the encouragement. Here are two cheerful surprises I got today:
Next day 2:45 AM: I am documenting that I am just now getting sleepy enough for bed. If I sleep as long as I hope I will (only slept 3 hours last night) there may be no update until tomorrow afternoon.
Noon: I have a very bad headache, which is a normal side effect of IVIG. Last time the meningitis presented itself around 9:30AM the day after infusion, so I think it is safe to say our protective measures worked! I’m going to chug some fluids then see if I can sleep more.
Midnight: The headache has gotten much worse. Whenever I move my head, the pain is severe and it feels like my head is in a vice. If I’m still, the pain isn’t as severe. I have tried NSAIDs, Tylenol, antihistamines, Tramadol, and drinking a ton. I tried a muscle relaxer since I haven’t been able to stretch and back pain usually gives me headaches, and I figured that may be adding to the pain. I slept from 6:30PM-10PM until the headache got worse and woke me up. I think I will take some steroids to reduce possible meninge inflammation, but I am waiting to hear from the doctor on what dosing he recommends. I expected this, so I am not discouraged, but this definitely isn’t fun. I’m not light sensitive or vomiting, and I have no neck pain, therefore I’m not worried about meningitis.