My daughter was EBV - and CMV - . She received a kidney that was CMV+ and EBV +. Within approx. 7 weeks after her transplant, she became EBV positive. The titers continued to increase each week. She was extremely lethargic and weak. The doctors said, "She has a virus, she will get through it" She had been taking Valcyte (450 mg) once per day. The doctors eventually discontinued her bactrim, but didn't increase valcyte, decrease cellcept or help fight off the EBV with Cytogam IVIG. My daughter's EBV was disasterous and eventually led to PTLD. I spoke with several other centers and they indicated that increasing Valcyte, decreasing cellcept and using Cytogam IVIG have been used to reduce the severity of the EBV. Not only did my daughter's team not decrease her cellcept, but their protocol trough level is 1.5 - 3.5 and my daughter's cellcept trough levels were 3.6, 4+, 5+, 6+ and 7.7 before the PTLD was detected. The cellcept (mycophenolic acids) levels were more than double the team's protocol range and their goal for EBV positive patients is to have their mycophenolic acid trough at the low end of that range 1.50 - 2. I still can't believe that when my daughter's EBV titers increased each week, her cellcept levels were at dangerously high levels and NOBODY brought this to my attention. I am convinced that this significantly contributed to if not caused my daughter's PTLD, which was critical from her mouth to her pelvic region with a legion the size of a walnut in her liver. Priori ro be diagnosed with PTLD, she had complained for several week of a sore throat, but not one doctor felt her lymph nodes or cultured her throat. Five days later, she could not walk through the airport. She had to be pushed in a wheel chair. What type of preventive measures does your center take to keep EBV and CMV at bay and what do they do to eliminate it as quickly as possibly if they should rear their ugly heads?
Seeking second and third opinions.
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