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Transplant Patient with CMV Infection
Oct 24, 2000

Hope I am writing these questions in the right section. A year ago I received a kidney/pancreas transplant. I had been on ganciclovir for exactly a year and discovered after my one year review that I had CMV. Now we knew from the beginning that I was CMV- (or positive with the anti-body against CMV)and my donor was CMV+. So the doctors prescribed 1G of ganciclovir 2x a day. The way I understood it to work was that I would become CMV+ (developing an immunity against CMV). The day I left the hospital for my one year review, I was told I could stop the ganciclovir. The very next day I was sick to my stomach and I thought maybe I was rejecting my organs. Test results came back from a few days before for a CMV serology test which came back positive.

I have so many questions:

1- I'm wondering how in the world did this happen? I thought that the whole point in me taking the ganciclovir was so that I wouldn't develop the CMV infection?

2- Every time I pull up a site on the web about CMV, it connects me to sites discussing HIV? Do I actually have AIDS?

3- I've been reading information on CMV and I am noticing that this can be sexually transmitted. Even though I am not sexually active now, I do have plans to be married. I am scared to death that I might even pass this on from eating from the same fork or drinking from the same cup as my boyfriend...and what about even intimately kissing? I am so afraid to do anything now.

4- I was in the hospital for 2 weeks receiving the ganciclovir by IV twice a day. Now they have me taking 3G of the oral ganciclovir every day. My kidney levels and pancreas levels still remain very good. However, my white blood cell count last week was 3.9 which is a little low for me. I am normally right around the low end, 4.8. My platelets have been high around 534K/uL. Also I am concerned because my liver levels being high, although they were lower this last week than when I was hospitalized. The AST(SGOT) was 59 and the ALT(SGPT) was 54. What other levels should I be concerned about?

5-I asked my transplant doctors if I will ever get to the point where I don't need to take the ganciclovir. They told me I will probably be on it indefinitely since I developed the infection even though I was on the ganciclovir for a year? Is there no possibility of ever getting rid of this?

6-They suggested that I take a CMV IgG test once a month for 3 months, but my question is what is it testing? and why is it necessary to test if there's no possibility of me getting rid of this?

I hope you can help, or even if you can provide me with resources that address the CMV virus in regards to transplant patients, it would be truly appreciated. I hope you can shed some more light on my situation or connect me to someone who can help. My transplant coordinators have sent me information, but the more info they give me the more frightened I get and the more questions I have. Please help!!!!

Concerned Transplant Patient

Response from Dr. Feinberg

Your story was a bit hard to follow from the point of whether you did or did not have prior exposure to CMV (+ antibody test) from the start. Nonetheless, let me try to answer your questions:

Ganciclovir is not 100% effective, so it is possible to develop active CMV infection despite treatment with it. The reason CMV is connected to HIV/AIDS is that it is a common infection in immunocompromised individuals, which includes both AIDS and transplant recipients. It does not mean that you have HIV as well. While it can be passed between people, CMV is a relatively innocuous infection in people with normal immune systems, so don't worry about future intimacy. The CMV IgG test looks for evidence of past exposure to CMV; I am not sure why they want to do this in your situation. Since CMV cannot be cured, it will always exist in your body, whether it is latent (not reproducing) or causing active disease. This is why they can't make you any promises about how long you'll be receiving ganciclovir.

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