Liver
EBV?
February 8, 2021
in Liver
Does anybody have any experience with EBV (Epstein Barr Virus?)
I know most people are exposed to it early in life, but I contracted it through my donor. I tested positive for it a few months ago, but it took a while for symptoms to show up and I just started showing symptoms within the last week.
I've contacted my coordinator to find out my next steps medically, but just wondering if anybody has any personal experience they'd be willing to share?
1 - 8 of 8 Replies
Transplant Patient
No - I hope everything goes well for you and let us know how you are doing!!
Transplant Patient
So I figured since apparently EBV post transplant isn’t rare I’d let you all in on my journey with it.
So far my tests for chronic EBV have come back positive. I was an EBV negative recipient, my donor was EBV positive, the virus was dormant and just recently expressed itself. It can affect the liver in terms of elevated liver enzymes and swelling of the liver, and obviously since my transplanted organ is my liver this could be quite dangerous for me. It can also easily turn into something called PTLD (don’t ask me the non abbreviated name!) which could be potentially fatal. I’ve also developed due to EBV something similar to lymphoma cells where my body is attacking the healthy cells and taking over them due to the virus, and depending on how that progresses it could become full blown cancer and require a stem cell transplant. We’re not there yet, my coordinator reminds me. One step at a time. But if anyone out there has any familiarity with EBV or post transplant PTLD please message me! I’d love to chat
Transplant Patient
Thank you for sharing!!
Transplant Patient
If you’re following - in my specific case my EBV positive diagnosis has turned into cholangitis and sepsis. Anyone have experience with either of those post transplant?
Thank you for sharing! I have not had EBV. I did get CMV from my donor. It was about 6 months post transplant when I started experiencing symptoms. I also had shingles and Parvo B19 virus. Having a compromised immune system is a journey!
Transplant Patient
@Jeanmarie thats an understatement! I haven’t had an actual cold but I’ve had so many other bizarre complications because of being immunocompromised that I never thought possible
Yes! I've had my transplant for 15 years. And I have learned more about viruses than I have ever cared to know. Its always an interesting visit when I see the Infectious Disease doctor.
Transplant Patient
After months of testing negative for EBV (Epstein Barr Virus) my most recent lab results came back with positive numbers for the virus again. Apparently this is a common thing, as EBV is a member of the herpes family and it's not uncommon for herpes to have periods of dormancy and pick back up again. So far I'm still feeling good, but this could explain the elevated liver enzymes I've been having recently. My doctors are weaning me off one of my anti-rejection drugs due to side effects, which could be the reason for my flare up. But it feels like if it's not one thing it's another. If you have experience with post transplant EBV, or know of any articles, please send them my way