Fiona's doctors took her off the preventative antibiotic to get her neutrophil count back up. To give her some added protection against opportunistic infections they raised her dose of hizentra. I talked to her rep about her reaction to the treatment and I've decided to use three sites instead of two for her infusion. I think this will be much better for her.
Yesterday she spent a lot of time resting. She seems to be feeling better. With cold and flu season starting I've noticed that she starts to get a runny nose, but it goes away instead of getting worse. I'm amazed at the difference her infusions make in her ability to fight illness.
Fiona's t-cell counts are worse than someone who has AIDS. In addition to her low t-cell counts she also has low b cell counts, and her b cells aren't maturing properly. How bad is all of this? Her condition is life threatening. Our pediatrician told me that I must be doing something right in my life for Fiona not to be extremely sick.
Where does this leave us? First, hizentra is a life saving drug for her. Without it she would have almost no protection from illness. Second, diagnosis will be critical for her future treatments. Right now she is getting weekly infusions, but it would be incredibly helpful to know what is causing her problems. Third, what we will have to pay for her treatments, doctor's appointments, and travel in the first three months of next year is more than 15% of our yearly income.
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