I told Zayne that we would leave today’s transplant clinic appointment with another medication, and I was correct. I noticed that Zayne seemed to be getting more tired and not eating as much. Her stomach also seemed to be sticking out, and Zayne was proud that she was at 61 pounds. I didn’t really think that she gained a healthy 4 pounds in one week. We left the appointment with a new medication to take at home – Lasix. I’m happy to report that Zayne seemed to perk up and have an increased appetite increased after taking the diuretic. Unfortunately, she couldn’t visit Aunt Stacy (a non-contact visit), because she needed to get that extra fluid out of her body.
Zayne is swallowing pills like a champ. She is using applesauce, and will work on water when she is down to taking fewer pills. I’m very impressed with her progression to pills.
Today’s blood draw was another vein poke taken from the top of her wrist. Unfortunately, Zayne was dehydrated (all the water was in the wrong place), and filling 5 tubes was a very slow, painful ordeal. Mondays are supposed to be a finger poke day, and that will happen at the lab. However (there is always a “however”), it looks like Zayne will need special treatment on Monday that will require an IV and an injection. Her strong, little body has powerful donor specific antibodies that are still a big problem.
Depending on the results of her CH50, she may need another Eculizumab infusion on Monday The panel-reactive antibody (PRA) will determine if she will need a new treatment – a shot of Bortezomib.
PRA = High = Bad
PRA = Low = Good
CH50 = High/Low = I don’t know [I couldn’t get a specific action number from the doctor]
From what I’m reading, bortezomib therapy can help to treat severe antibody-mediated rejection. I knew that Zayne’s rejection is bad, but seeing the words “severe antibody-mediated rejection” just drives the point home. I fully expect that Zayne will spend all Monday in a hospital bed to have her body infused with eculizumab and injected with bortezomib.
I asked if Zayne’s donor specific antibodies could be targeted, but that technology doesn’t exist. All of her antibodies need to be targeted to get at the bad ones. It seems so archaic.