Thursday, July 30, 2015

1st dose of Ritixumab

The process has OFFICIALLY started!!!  Yesterday, I went to Mayo to have my first dose of Rituximab.  We left the house at 5:00am (which was PAINFUL) but made it to Mayo at 7:00am for labs.  See how happy we are to be awake?


After labs, we went to Mac's to eat breakfast (of course).  Once we were done, we had an hour or so before the infusion started, so we walked around to some of the nearby hotels to start to narrow down where we'll stay for the transplant.  We weren't able to see the Gift of Life Transplant house because we didn't have an appointment, but we'll make sure to set it up for the next time.  All-in-all, I was pleasantly surprised by the nearby accommodations, and the prices were high but not awful.

My infusion was on the 8th floor of the Eisenberg building, which is a very nice, relatively new (or remodeled) area.  I had a private room with a bed which is great for a longer infusion.  They gave me Tylenol and Benadryl when I got there, and we had to wait a 1/2 hour to let the meds kick in.  There was also a 100mg dose of IV prednisone that came with the Rituximab, which is used to essentially shock the immune system in order to allow the Rituximab to work.


The infusion starts off very slowly with only 50ml/hour, slowly increasing over time to 400ml/hr.  Initially, there are blood pressure checks every 15 minutes to ensure I'm not having any negative reactions to the meds, then once every 1/2 hour after.  Each blood pressure check would increase the flow rate, and that's the info that's on the board in this picture.

Benadryl is awesome.  It makes me SO sleepy.


Joacim stayed in the room with me for awhile, but he got bored eventually so I asked him to go get me some food. I wanted Dunkin Donuts, but they were sold out, so he came back bearing a Cinnabon.  I wasn't horribly disappointed ;)

Neither was he when he got to eat the leftovers :)

All-in-all, it was pretty uneventful.  About an hour-and-a-half in, I started to experience a sore, scratchy throat, but it was fine by the time the infusion was over.  We headed home after it was done....what a LONG day!  The most exciting thing out the infusion was that I couldn't do dialysis last night.  A night of FREEDOM!!!!!

Unfortunately, I kinda need dialysis for fluid balance.  I pee very little now...about 800-1000ml compared to 3200ml+ previously, so most of the fluid I took in yesterday stayed in, and I went to bed pretty full.  I woke up with a pretty wicked headache this morning, so I got up to get some Tylenol, and I noticed that my face was swollen.

So I went back to bed.  Fucking hate a swollen face.  The same thing happened when I received a cortisone shot last year for my hip.  What I hate is how swollen the bridge of my nose gets...it's just strange.  It's mostly gone now, but my face still feels warm and is flushed.  I'm sure by tomorrow morning it'll all be gone (the swelling, that is).
I have another infusion scheduled for 2 weeks from now, and we'll also measure my b-cells to see if there's been an response.  My albumin is still on the rise (yay!) which means more of the drug will be staying in  my system.  I've begun the process to go on short term disability, so hopefully that'll start in the next week or so.  I really need some time before the transplant to rest and focus on being healthy.

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...