Epstein-barr virus … it’s back!

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,

5 thoughts on “Epstein-barr virus … it’s back!

  1. Praying for you! I hate EBV; it has causes lots of issues. Our transplant team actually draws M’s EBV tiders every time she has her routine labs. It’s like CMV; once you have it, it never truly leaves your system / goes dormant and 95% of the population is walking around with it. Our experience is that anything can cause your levels to rise. It caused M’s first round of rejection when her team lowered her immune suppression to get her body to fight the EBV on it’s own. M even had her tonsils and adnoids removed last fall because of it. Apparently, it can be found in your tonisils, which is what they biopsied for her PTLD test. It’s NO fun so I feel your pain. Praying for your energy level, patience, and peace.

  2. Praying for you Amanda! I remember what mono was like for me a few years ago, I can not imagine what it is like for you! I hope that you feel better soon!!!

  3. Hi Amanda,
    I have EBV as well. In fact, July 3rd I spent time swimming with my nephew and niece then went to pulmonary rehab. July 4th I was supposed to go to a cookout and then fireworks. Instead I slept till 8:30 that night!! Wow!! Found out my viral load had rocketed up to 140,00. So much for the party and fireworks!! LOL. I contracted it about 3 months post transplant(Aug 27,2010) and they tried lowering my prograf twice, once in Dec. and once in March, and all it did was send me into rejection. In fact, the second attempt wasn’t supposed to happen but Dr. Miller made the decision without discussing it with my primary transplant surgeon Dr. Kelly. She was pretty upset about it and so was I. Dr. Kelly and my infectious disease doctor, Dr. Koval, discussed giving me something called retuximab. It’s a drug used for a lot of stuff involving transplant patients and it attacks and kills B cells which is were the EBV virus hangs out. However there was serious dicussion about this with the two transplant doctors, Kelly and Eghestad, who argued against it and Dr. Koval who argued for it. Dr.’s Kelly and Eghestad felt it was an untested treatment for eliminating EBV and thus against their Hepicratic oath of “do no harm” while Dr. Koval said it was safe. I wanted to try it and in early June they decided to give me an infusion and it worked. Unfortunately by Sept. it was back. By January levels had gotten high enough that when I visited with Dr. Kelly she agreed that if Dr. Koval wanted another infusion she would approve it. When I then visited Dr. Koval I was surprised when she said she would not recommend another treatment unless my viral loads rocketed into the 300-400,000 range. At that point they really start worrying about PTLD or Post Transplant Lymphoma (caused by EBV) but my levels were not quite that high. She explained that another patient of hers, a heart transplant, was given retuximab for some other purpose and it let loose a virus that caused some type of ireversible brain damage. So I’m stuck with it. It is what it is. I got it and I have to deal with it. Better than some of the other nasty stuff the transplant folks worry about us getting. It really helps me if I find out the results quickly and the results usually are released on Thurs. (for a Monday blood draw-shipped to Clinic). Mychart, for whatever reason does not have the results for me until the following Mon. or Tues. so Dr. Koval emails them to me. It helps that I know exactly what is causing my fatigue so if my EBV levels are high I can back off my level of activity. My activity level is really high. I have always been really active so staying active is really important. I love working out so I just back off on the intensity and amount until I feel better. fireworks. Just remember, “God, grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference. Hang in there Amanda.
    P.S. Dr. Koval is awesome. She really takes the time to answer questions, clearly explain things and just be a real nice person. Even takes the time to send those EBV results using her own email. Did I say she is awesome!!

    • Wow, I have never met Dr. Koval. Is she at Main campus on the liver transplant team? Dr. Eghtesad is pretty much the only one who handles my cases now after the major splenectomy 11 mos post-transplant. I do like Dr. Kelly a lot though. She is very smart and respectable. Eghtesad said my level of 2004 wasn’t enough to worry about, and I did ask about the PTLD. Then out of the blue, a result from last week said I was back to the negatives. This mono stuff sure does drive we transplant patients nuts!!!

      • The transplant folks referred her to me. And she works Main campus G21. She’s great. Bijan (What he told me to call him so I’d not screw up pronouncing Eghtesad. haha.) His jokes are sometimes really bad. Bad enough I laugh anyways. I like anyone who has any kind humor. If you can’t laugh about it then I’d go nuts. And there is serious pressure in being a transplant surgeon. I just marvel at the thought of how skilled and smart they all have to be. First time I met him I asked a question about whether they’d be looking to find out for sure about something. He chuckled and asked if I thought they just laid around and goofed off when not performing surgery. In, what was at the time a pretty serious moment (It was my visit with a surgeon during the testing phase before approval for the transplant list) and I was nervous as hell about all this stuff. I couldn’t help but just start laughing. Tension level went way down. Who is your coordinator? Mine is Rich. He’s great. I do feel for you with the EBV. When I first got it I really had a tremendously difficult time dealing with it. Thankfully Dr. Koval kept me sane. I now think “It is what it is.” I’ve got goals I want to accomplish and EBV just makes it a little harder but considering how bad off I was pre transplant this is a tiny obstacle in my path. Basic things like bathing became massive, titanic battles like a daily landing on Omaha beach(see opening of the movie Saving Private Ryan). Soo..I am glad to know someone else who is dealing with this. Whoops. I’m not glad you have it but sometimes you can feel like your all by yourself. It’s somehow comforting to know I’m not all alone.

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