Ron was unexpectedly discharged today. It was a nice surprise, and we were back to the apartment by late afternoon. He still tested positive for the CMV virus, but at a low enough reading that they changed him to a pill medication. He also had his second light therapy treatment in his room. It takes about 4 hours. (ECP).
From his port, tubing takes blood into the ECP machine where a centrifuge separates plasma, red blood cells, and the white blood cells. The white blood cells are collected in a bag and are treated with a drug called UVADEX; the treated cells are exposed to UV light inside the machine. ( reminded me of a miniature tanning bed) the treated cells and other blood products are all returned into the body through the port. The patient is then very sensitive to sunlight, so for 24 hours Ron must keep skin covered and wear special sunglasses. ECP light therapy is not yet approved by the FDA for this purpose although it is in Europe, so Ron is part of a study. He also is having Embrel injections for 8 weeks as a part of this study. The nurses have told us repeatedly that he is so fortunate to have these treatments to combat his graft versus host symptoms.
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