I really need you guys right now...
On top of everything else...a test for EBV just came back positive. This can lead to PTLD and her trans. team mentioned it today for the first time (which caused much shock to me). We are scheduling a CT scan for this week and will be doing the portal vein angioplasty on Friday.
~Definition from CLASSKIDS.org:
PTLD stands for post transplant lymphoproliferative disease. This is a problem that occurs in transplant patients and is believed to be caused by an interaction between immunosuppression medications and a chronic viral infection called EBV (Epstein Barr Virus). PTLD occurs in a small percentage of transplanted patients and can progress to lymphoma, a cancer of the blood cells
. PTLD can sometimes be treated by decreasing or stopping the immunosuppression medications.
But on a side note - Natalie (good girl that she is
) pulled her PICC line out (Saturday)!! This was the last day of the meds and she got all of her doses for the day, so she pulled it (how she knew that it was the last day is beyond me). She had a pretty good weekend, but she’s quite moody (we’ll see what the labs show I guess), she’s also not sleeping well, but I’m trying not to get myself all worked up.