PTLD, EBV and Similar Adventures

Source:  PTLD, EBV and Similar Adventures    Tag:  ebv cmv
We got the call last week that Daniel has an EBV of 10,000. That's important for a few reasons, the most pressing is that it could be a sign of PTLD. PTLD is right up there with rejection on the list of terrible things that can happen after a transplant and, though it's rare, it's very serious. Our plan is to repeat the EBV on Tuesday, then again a week later, and see if there is any improvement. If there is none, Daniel will have a full body CT scan with contrast, also a risky procedure for a kidney transplant patient.

I'm writing about this primarily to illustrate why you should be informed and advocate for your child. We moved from one state to another to get better care for our son. My complaint with the previous nephrologist was twofold. First, he was arrogant and didn't think our son needed to be seen by a transplant team. Second, he didn't test virals. At all. " Virals" in kidney land is short for EBV, CMV and BK viruses, which most transplant teams test for about every 6 months.

If we were still there, we wouldn't know right now that he has a 10,000 EBV, and PTLD could be ravaging his body without our knowledge. That is unacceptable. (We happen to know he was negative 6 months ago because I begged the pediatrician to test him when the nephrologist would not.)

I don't usually make statements, preferring instead to leave folks to their own research and conclusions, but this one is important. If your little one has a transplant, s/he needs to be seen by a transplant team regularly unless the nephrology team has a lot of experience managing transplant care; and the nephrologist should not be offended that you asked. Regular nephrologists who don't take care of transplant kids very often are often great doctors - but in my opinion, the transplant experience matters, and it matters a lot.