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Recurring CMV

I had a kidney transplant in July.  I contracted CMV 2 months post transplant.  My donor tested negative and I tested negative so no one knows how I got it but bottom line is I've got it.  Copies were 27,000 then slowly decreased to undetectable and I went off Valcyte.  Now one month later my copies are 47,000 and I'm back on the Valcyte.  Does anyone have recurrences of CMV and how are you doing fighting it?

Thanks.

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Replies

  • I had CMV about 9 months after transplant because my donor was + and I was-. I was put on Valcyte but ALSO taken off of Cellcept due to WBC. Once it went away, they put me back on Cellcept at half dosage. It still came back, so they too away the Cellcept and I have had no more issues with CMV. Is this maybe the problem? Are you still on Cellcept?

    • I have never been in cellcept. Started on prograf, then switched to cyclo plus am on myfortic which was reduced because of the CMV then back up when it was gone and now reduced again. Did you get CMV for a 3rd time? Did it do any damage to the kidney?
      Thank you for your response. I'm pretty worried about this.
      • Actually, no. I never had another bout with CMV. That is why I asked you the questions that I did.

      • Your Myfortic is likely the culprit - it is the coated version of Cellcept. Many folks are now switching to their generic - Mycophenolate. All basically the same. My donor and I were also CMV-. Given that it is transmitted through body fluids and something like 80% of the population has it, I have been wondering whether my transplant center could arrange testing for my household. Of course... if I have already avoided it somehow for 50 years then... To answer your question, provided the CMV does not get out of control, your transplant should be fine. Unlike BK, my understanding is that CMV does not attack the kidney itself... the main issue with CMV being that it can make you very sick...
        • My understanding is that CMV can be spread by blood, as well as saliva, urine and semen. The latter modes generally require that the infected person be re activated (I.e. for the virus to come out of dormancy). If one stays away from sick people this should not be a problem. CMV can be shed into the environment by active infections where it has a fairly low, but not zero, chance of transmission. Hand washing is once again the key here...
        • Thank you for your interesting reply. My doctors were pretty surprised I ended up with CMV and thought one possibility was the donor may have been given blood at the time of death and it carried the CMV. My husband had previously been tested to be a donor and he was positive but I was always negative so I don't know why I never got it from him. No one else in household was tested. Doc said I could have even picked it up in the hospital. A bit of a mystery. Hoping the valcyte conquers it quickly this time. Last time it took 3 months to be over and my copies were not as high. But doc only gave me a 3 week supply so we will see.
          • As David said, it is transmitted by blood. That is why you did not get it from your husband. When they gave you the Valcyte, did they take you off of the Myfortic? They can reintroduce at a lower dose to see if that works. If not, they may take you off of it.

             

  • Hi Betty lou

    I hope you feel better. I am sorry you are going through such a frustrating experience. Has your doctors lowered some of your anti rejection drugs?

    What you are doing to de-stress? Are you eating healthy foods, sleeping eight hours- you know all the healthy choices that we all can improve upon.

    • Yes my myfortic has been lowered. I am confident we will get this under control this time, but wondering if others have had recurrences of CMV and what the outcome has been.
      Thank you for your reply.
      • Watching your sugars in your diet is very important in fighting viruses. I only eat fruit for my sugar fix :) and have small portions and always with a protein source.

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