Remember this post? In December, 2010 – around 3 months post-transplant, my liver enzymes started increasing. Everyone panicked, my team ordered a liver biopsy, and then it just turned out that my nurse had forgotten to check the box for my monthly EBV (aka, the virus that causes mono) labs and lo and behold, that’s all it was. I had somehow caught mono in my severely immunosuppressed state. I did not kiss anyone or share food/drink with anyone, although 2 people in my house were “carriers” of the disease. After a few months of antivirals and lots of hype, it was under control.
I believe I picked it up again last spring and I can’t exactly remember what/why/how long, but I believe it went away quickly. That was when my white blood cells (immunity) were literally in the decimal points. (Normal is 4.5-10) I was so busy being weak and getting the splenectomy that I really just don’t remember the mono that clearly. You have to choose your battles, friends.
So skip to last fall… 1 year post transplant, the team stops drawing monthly mono labs. It’s just protocol.
Proceed to May-ish of this year. I was so fatigued – constantly – and often felt sick but couldn’t pinpoint what was wrong. I passed it off as viral and went on with my life. But the fatigue has been relentless. I finally decided this feels a lot like mono did back in 12/2010. After a lab test, sure enough, it is indeed positive for EBV.
I’m waiting for Molly (my transplant nurse coordinator) to confer with my surgeon, Dr. Eghestad, about the course of treatment. I, of course, am fearing worst-case scenario (as usual) which would mean a liver biopsy to check for post-transplant lymphoproliferative disease (PTLD) which is when the mono/EBV leaves the blood and enters the liver. I’m worried they’ll play with my anti rejection meds to give my body more “fight” for this and possibly run me on a few months of Valcyte (strong antiviral drug) again. I’m trying not to rush to any conclusions before hearing how bad it really is this time. I do not have time to deal with a biopsy (nor the pain or the anxiety), and I don’t want to go to the Clinic to visit my transplant surgeon and the Infectious Disease team. I’m already going up there in August, and I have been enjoying the “break.”
So don’t worry – mono is transmitted via saliva, so I’m not contagious unless I am kissing you or sharing a drink with you. However, if you are immunocompromised like myself, no one knows how it gets around so easily. It’s a mystery to me. At least it’s not the pneumonia I came down with a year ago at this time.
Please pray we get this under control and that my energy levels start to increase. It’s summer time! I’m in 3 courses for school, an art class, and I have my normal super-busy agenda to keep up with. So many friends, events, family, everything that makes this life so sweet!
Also, post-traumatic stress treatment starts tomorrow. That should be interesting, to say the least. I want to give up these wounds once and for all, and I finally found a place where I think I can get some help. More on that later.
Please don’t forget to be rallying for my August 11 Lifebanc Team Race for Amanda event – we are off to a good start, but we can do much better. Around one more month to register and invite a friend! I will be drawing the Early Bird Raffle ASAP – didn’t feel up to it today. Hopefully will post tomorrow.
Love to you all,