I'm at work and seriously do not want people to see my eyes right now so I am going to update whomever reads this with some shitty news we got today. Jada Rose has EBV. That is Epstein Barr Virus. This is a pretty bad thing...manageable, but bad. LiverFamilies.org had a post regarding it and it explains it better than I do...
EBV (Epstein Barr Virus) is a herpes virus; it's probably the MOST common virus in humans. Many adults will have copies of this virus in them, and not even know it. If you've ever had mono, you've got EBV copies.The reason EBV is so dangerous in post-transplant patients is because most immune-suprressive drugs (like Prograf) suppress the T-cells in the body. Suppression of these T-cells can cause the EBV to replicate uncontrollably in the body. The most typical EBV copies are attached to your B-cells, and suppression of your natural killer cells and cytotoxic cells (both T-cells) can cause these B-cells to replicate over and over, causing a high EBV titer.
This over-production of the B-cells is known as post-transplant lymphoproliferative disorder. Lympho = B-cell; proliferative = over-production (in layman's terms!). There are a couple of types of PTLD, but the distinction is usually not made as far as I understand.
Treatment usually ranges from lowering/dropping immune-suppressive therapy to allow the T-cells room to fight, to adding an anti-viral to try to combat the virus cells, to chemotherapy to suppress the tumors and the B-cell population.
So yah this pretty much sucks! Jada will have this for the rest of her life, and we will likely be fighting it for as long. EBV can lead to tumors, lesions, and cancer all pretty scary stuff. My poor sisters called me and tried to talk to me but I have some sort of defense mechanism that causes me to have a flat affect when I try to explain it. I can type this info, but the emotion of such thoughts and possiblities comming out of my mouth is simply too much right now...sorry Bird and Kat.
Perhaps the most difficult thing is the harsh reality of our situation: Jada Rose is a liver transplant recipient. We were told that a liver transplant was not a cure but rather trading one set of problems for a whole new set of problems. On the positive side, this CAN be managed. Its going to be a lot of work but we are capable of dealing with this.
ps. For the second year in a row Fathers Day was absolutely euphoric for me. I LOVE THIS LITTLE GIRL SO MUCH!
Monday, June 16, 2008
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oh man you guys. you have been through more than any parent should ever have to bear. and although i don't really understand what is going on (even though it was probably a great discription, i am an idiot) and as crappy as it is, i know you can handle this too. i am, however, so so sorry. jada jumps on and off of our prayer train and she is back on the wagon for now...
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