3rd IVIG

The 3rd IVIG is done, and there are 3 more to go. I think Zayne learned the importance of drinking a lot of water prior to an IV poke. She refused to guzzle water the night before and the morning of the procedure; the IV insertion did not go well. On the positive front, there wasn’t a COVID test. Even though we were told that there wouldn’t be a COVID test, Zayne was stressing about it.

IVIG – what is it?
Intravenous immune globulin is a product made up of antibodies that can be given through a vein. Antibodies are proteins that your body makes to help fight infections. Each antibody made by your body is slightly different, because it fits like a lock and key to every foreign substance (such as a virus or a donor heart) that gets into your body. Since Zayne created antibodies to destroy her donor heart, all of her antibodies had to be wiped out (unfortunately, there isn’t a way to only target the wayward antibody). It is bad timing to have antibodies wiped out when there is a pandemic.

IVIG is prepared from the blood donated by thousands of people, to make a super-concentrated and very diverse collection of antibodies.

Only three more 6-hr monthly sessions needed. After IVIG is completed, then back to getting vaccinations (the first round landed Zayne in the ER and the dreaded COVID test). Zayne was only the 2nd kid at Children’s Hospital Colorado to undergo Eculizumab treatment for heart rejection. This is a chemotherapy drug that stops antibody production (need to stop all antibody production since the donor specific antibody cannot be targeted), and has a side effect of allowing meningococcal infections. After Zayne, there have been other kids to have this treatment, but Zayne was the only one that had a severe reaction to the first set of meningococcal vaccinations. She is not looking forward to the next set of vaccinations.

How is she doing?
Numbers are holding steady and not getting worse. Heart Echo and EKG show no change. Donor specific antibodies are dormant, resting heart rate is still in the 130s (occasionally high 120s), and BNP is below 1,000 ng/l for the first time since rejection. BNP is a protein that measures heart failure. Before rejection, her level was below 100. Zayne still gets out of breath, and has to ask me to slow down.

Other exciting news is getting a new, smaller pill box with removable sections. Zayne is doing great swallowing all pills with water. She is down to regular rejection meds, except for one. When she gets out of heart failure, then she can stop taking that extra medication.

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