PTLD scares me the most out of all of the potential post-transplant complications. That and all the other types of cancer he could get (for example, he’s at a much higher risk of skin cancer).
PTLD is Post Transplant Lymphoproliferative Disorder. It’s a type of cancer specific to transplant patients, frequently associated with Epstein-Barr Virus infection. Pediatric patients are at a much higher risk than adult patients (partly or possibly primarily because many peds transplant patients have not been exposed to Epstein-Barr Virus at the time of their transplant, but receive a kidney from an EBV-positive donor, or are exposed to EBV some time in their lives while immunosuppressed).
Then, evidently, because of his hypogammaglobulinemia (basically, parts of his immune system have been pretty low ever since we started looking at them) and possible functional antibody deficiency, he’s actually at an even higher risk for developing PTLD. Yay, him! 🙂
Mostly, we just monitor him closely for symptoms of EBV, and I’m supposed to get very familiar with all of his lymph nodes, and we’ll watch his tonsils closely, and a few other things, and if he gets it, the treatment is to reduce immunosuppression and hope it goes away. 🙂 I need to note – chances of him developing PTLD are still fairly low, in the grand scheme of things. I can’t quantify it – frankly, every study I’ve read has been unable to quantify it even in the general transplant population, let alone factoring in his immune issues.
But it freaks me the H out.
And it’s one of those transplant things that most people just aren’t aware of. Getting a transplant is a GREAT thing, and there are obviously more benefits than drawbacks (I mean, being alive and having a greater than average risk for cancers still beats not being alive, right?), but there are still a lot of scary stuff that come along with it.