Friday, June 25, 2010
I'm getting my infusion right now, and it's been kind of strange so far. My doctor cut the hydrocortisone down to 50mg rather than 100, and then told me to cut out the Ibuprofen.
I got really nauseous and nearly threw up and fainted when they first started the infusion. I don't know why, but I know that it was anxiety this time. It may have been because they blew a vein for the first time, and that just kind of freaks me out and hurts like the dickens! Mom got me some ice for my head, and I had to cut out the built-in bra on my tank top because it was putting too much pressure on me and aggravating the nausea.
The nurse started me at 25 cc/hr and raised it to 50, then 75, then 100. When it appeared that I would be done in 4 hours again, she slowed it back down to 75. I'm a little annoyed because I'd told her that I wanted to take the full 6 hours for it to see how much better I'll get.
Mom made a point of telling the nurse that she's recorded my infusion start time as 10:05, but that's more like the time they started the Benadryl drip. When she complained about it, the nurse dropped the speed back to 50. I'm really trying to find out what works for me, and them trying to rush it and going all over the board for speeds is probably not going to show me what an "ideal" infusion can be like.
I'm really gearing towards Sub-Q now :)
So, the infusion finished at 50 and took about 7.5 hours. I felt great when I left and was able to walk out of my infusion center for the first time rather than leaving by wheelchair! I'm so happy about that! I feel normal or maybe better than normal and I have some hope that these treatments are going to work for me now. Yay!! :D
I think next time I'll tell them to max out at 75 & just leave it there.
Update
It's now the morning after my infusion and I feel the best that I've ever felt after one. In fact, I feel like if I were working, I'd have no problem going to work within a day or so. The only things I notice today that might be from the infusion are lower backache and a headache. I took a Benadryl before bed to help with any lingering side-effects.
I'm amazed!
Tuesday, June 29, 2010
I had my infusion (#7) on Friday, and as I said in the previous journal entry, I tried to keep the speed of it down. I can't believe what a difference that has made to how I felt afterwards! I mean, normally I have some trouble breathing, I'm a zombie, itchy, and can barely walk during and after the infusion. Then, when I get home I have to sleep for at least 3 hours, and I'm so weak and exhausted that I can't even lift a normal glass of water.
By way of comparison, when I left the infusion center, I felt good enough to walk out on my own 2 feet, then I only slept for an hour afterwards. I went home with my boyfriend that evening, and wasn't even concerned about being far from the hospital. Then, Saturday I went shopping at Best Buy and bought a router and upgraded my cell phone...so I was there for 3 hours, and had no problems. I did sit down while upgrading my phone, otherwise I wouldn't have been doing so well. Sunday I went to a baseball game with my boyfriend. Granted, he took me in my wheelchair to help stave off exhaustion and I wore a mask, but nevertheless it was such a tremendous improvement over any other time at least since I've started treatments, but more likely for the last 3 years since my seizures started. I started getting tired towards the end of the game, but after we got home I still felt well enough to go for a swim (another first in 3 years) before dinner. All in all it was a wonderful weekend, and I'm very hopeful that I will continue to improve! :D
