Like I said in my last post, the biopsy (last Thursday) showed nonspecific inflammatory changes, but no rejection or bile duct damage. That’s great.
However, they found the Epstein-Barr Virus in my blood after the other week’s labs, and they wanted to run my biopsy sample to see if the virus had made it to my liver. If it had, there would be a chance of it causing a particular form of cancer, a lymphoma, called Post-transplant lymphoproliferative disease (PTLD). PTLD is surprisingly seen mostly in pediatric transplant patients, and the only treatment for PTLD is a strong chemotherapy drug, Retuximab. Needless to say, we have been hoping the virus was only in my blood and not in my liver.
We were relieved to find out the biopsy showed rare EVB nuclei in my liver, which my infectious disease doctor, Dr. Avery, said were not indicative of PTLD. She said if it was going to be PTLD, there would be obvious pathology all over my liver – not just the nuclei.
So while we are thankful the virus has not yet made it to my liver, we are praying it doesn’t progress into my liver and cause PTLD. It’s unlikely, but it is possible.
Dr. Avery wants to keep me on Valcyte, the antiviral for a couple of months to try to keep the virus from spreading. We want to contain it in my blood.
Also, my surgeons reduced my anti-rejection meds so that my body has more immune strength to fight the virus. They have to be careful because if they eliminate the anti-rejection meds all together, they could throw my body into rejection. They are going slowly and carefully, and of course, they will be watching my labs for Prograf levels.
Dr. Avery will also be closely monitoring my labs, hoping to see the virus levels and my liver enzymes remain stable or, better yet, decrease to normal levels.
Coincidentally, the liver team is having a pathology conference tonight, and Molly, my coordinator, is bringing my case to the entire group of surgeons and pathologists. There’s no doubt I’ll get the best treatment from a roundtable discussion of some of the best liver transplant experts in the country. At the same time, this has the potential to be a rough road until all of the doctors agree on the best treatment.
The EBV is definitely why I’ve been so tired and likely why my liver enzymes increased. However, it’s been going on for a while and I believe I’m at the end of it.
Molly is amazing. She worked from home New Years Eve, her day off, and relentlessly called Dr. Avery and my surgeons trying to get some kind of answer to comfort us until we could hear more on Monday. When she called one of my surgeons, he told her he was “not overly concerned.” He’s one of the best doctors in the country and even studied with the “pioneer” of liver transplantation. His comment relieves me.
That’s pretty much all I have for now. Please continue your prayers that this goes away quickly and of course, safely. This has been a rough road, but it could be worse. I’m so grateful for your prayers thus far which I truly believe have kept me alive.