IVIG Infusion

Yesterday and today I saw my old friend and nurse Bello.  He came to my parents home and spent the day giving me my infusion.  He didn't leave here last night until after 9:00.  I am thankful that I was able to get him again as my nurse.  I'm a rare case in how badly I react to the medicine and we have to have a very strict order of events.  The days before I drank nearly 100 ounces in water.  This is to ensure hydration and to prevent negative side effects.  The day of, he gets my line in, I take oral Tylenol, he gives me fluids via IV, then steroids via IV, then Benadryl via IV.  If you've ever had the pleasure of IV Benadryl, I'm sorry, it burns your veins like liquid fire when it goes in.  This is also when my body goes into a twilight sleep where I can't really move but I can still hear what's going on around me.  After all that, we start the IVIG.  Both days, we ran it at the slowest speed we could since it's been over 18 months since my last infusion.  After the IVIG is complete, we run another bag of saline to make sure I'm properly hydrated.

My dad came in at one point and looked at the line in my arm.  He gently hugged me and said, "I'm sad that you are having to do this again."  Me too dad, me too. 

My post medications this time consist of a steroid pack and anti-nausea meds.  The worst side effects will start showing up in a day or two so if we can stay on top of them, the better off I'll be.

I have never been too good about taking time for me, or downtime.  As a wife, mom and business owner, I am constantly going.  I enjoy the hustle and bustle of life so being forced to lay down for days on end is really difficult for me.  You see, I desperately want to live a normal/healthy life.  I had a taste of that for a little over a year and it was sublime.  There was no scheduling conflicts around my infusions, no lost work, no little boys being sad that mommy couldn't play.  Since I have tasted freedom and health, I long for remission like a dessert yearns for rain.  I desperately want to live a normal life free of IV lines and Benadryl comas.  I desire to run in our new yard kicking around a soccer ball, climbing trees and hiking the nearby trails.

Dr. Burt is hopeful that remission is possible again.  The course of action for now is we will infuse for one day, every 3 weeks.  I was able to only do 2 days and not 3 because I've lost 15 lbs since before the transplant!  Yay me and yay one less infusion day!  So, we march on, hoping this works and stops the progression.  Until then, I'll keep snuggling with these guys.