They gave me one of these:
and I got two of these:
only this is beautiful because it was taken 6 hours after my initial allergic reaction. Gone were the goose eggs as eyes by then.
I always go for the Bonus!
So my trip to Chicago started out as usual. Blood pressure, weight, labs, wait and see Dr. Transplant, and all was well, for the most part. I whined about mouth ulcers and constantly being tired and blah blah blah, so it was decided that I'd switch from Sirolimus to Cellcept and that I needed an infusion of Daclizumab (aka Zenapax)to cover me during the transition. I've had this med before so no problem. I was given a script for an immobilizer for my wrist/hand (see my tomato soup post from last week) and was sent on my merry way to obtain said item. Insurance no cover it, so boo, I left there and went to meet the group of people that work behind the scenes and prepare the islets for transplantation. Seriously an awe inspiring group of people from all over the globe dedicated to finding a cure. One of the other islet recipients was also there and we talked a bit about how the islet transplant has changed our lives (more on that in my next post). I read my "thank you" exerpt from my blog, well actually Melissa read it while I cried, cause, well, I was being a girl. *sigh*
We got a tour of the cell isolation lab. I wish I had photos to post. It's amazing and I'm not even close to being qualified to talk about it. They had islet stained so we could look at them under microscope, which was too cool!. I wanted to pat my belly and say "good islets, nice host liver".
After that I went back up to the clinical research center for my infusion of Daclizumab and that's when my day decided to go haywire. Because I can't do anything the easy way, I decided to be allergic to the med. The infusion takes about 30 minutes and about half way through I felt nauseous, but it went away. Ok fine, sometimes I do that, I just have random nausea and sometimes I puke and sometimes I don't. go figure. Right about the time the infusion finished my eyes started to itch and that too went away, but no I couldn't leave it at that, so the itching came back worse and my eyes started swelling shut and that was when people started running around like mad squirrels on a mission.
My blood pressure shot up, I was dragged off to a room with a bed, stuck with an IV and given Bennedryl. Bennedryl in an iv push when you're stressed and half panicked has got to be the whackiest buzz I've ever experienced and it wasn't even nice. I wanted to fall asleep but was afraid to because I was very aware that every once in a while I felt like I had to think about breathing in order to breathe. I'm sure that part along with not being able to stop shaking was just anxiety, but still, it freaked me out.
I couldn't tell you how long it took before they decided everything was okay but I missed the luncheon except for the last 20 minutes or so. yes, they actually let me go to it, all puffy eyed and sleepy. I wish I had been there for the whole thing, hopefully, they'll do it again next year and I won't let them give me any whacky drugs before hand.
I'm still taking Bennedryl every 4 hours because at about 3.5 hrs after a dose my eyes start swelling again, but the itching is gone and all shall be well soon.
That was pretty much my day, or at least the highlights and what I remember. Melissa and I decided to stay in Chicago last night instead of driving home. I slept the rest of the day, and night and today. I'm going to work tomorrow, maybe I can sleep through that too.
I need some time to think about it with a clear head first, but tomorrow I'm planning on writing more on how having that islet transplant has effected my life, because it's not just about blood sugars and being afraid to follow in my mother's foot steps. It's given me different eyes, and not just puffy ones!
Anyway,
Yayresearchers and everyone behind the scenes!
I'm glad we got to meet you all!
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