Better News, for a Change

Finally, I received a call today that had better news for Zayne. The CH50 and PRA results are so encouraging that Monday’s extra treatments are probably not needed. Zayne is extremely happy that Monday should only be a finger poke for a routine blood draw.

The CH50 blood test measures the activity of a group of proteins in the bloodstream. These proteins are part of the complement system, which is one part of the immune system. The complement system helps antibodies fight off infections and destroy substances (i.e., Zayne’s heart) that are foreign to the body. The eculizumab brought her level down to nearly 0, but now it is at 43 which is near normal. I couldn’t get a clear answer on what level she should be at, but this seems to be ok.

The great news is that the PRA has gone down by nearly 50%. The Panel Reactive Antibodies measures the amount of donor specific antibodies. We’ll measure these next Thursday, and I hope then continue to go down.

Zayne is still easily winded, and she doesn’t have any physical restrictions. Right now, she just needs to self regulate. I have to figure out how to get her moving in a fun way.

To encourage Zayne and to help motivate her through difficult hospital procedures, I promised to buy her a new mountain bike. I told her that I would find the color that she wanted, but had no idea that there is a bicycle shortage. I could not find the gloss black bike with blue trim anywhere in the Denver area, so I ended up driving to Cheyenne, Wyoming to pick up her new bike (delivered to my car). I thought we could all go, but her team does not want her so far away, so Aunt Vanessa watched her while I made the 4 hour (round trip) journey.