Are you EBV and/or CMV positive or negative?

[TeenHatesDialysis]

My daughter, Jaclyn, was EBV and CMV negative and received an EBV and CMV positive kidney. This has caused serious problems.  Are you waiting for a kidney and do you know your EBV and CMV status? If you are EBV negative would you purposely try to infect yourself by exposing yourself to mono, trying to change your EBV status to positive prior to transplant in order to minimize your risk of PTLD? The best case scenerio, less risk, is getting EBV and CMV negative donor kidney to CMV and EBV positive recipient and the worse case scenerio is going from positive donor to negative recipient. It can be fatal.

Would you try to infect yourself with EBV (mono) to eliminate the worse case scenerio? I have been encouraged to get my 18 year old daughter infected with mono so that she will be EBV + prior to transplant and only accept and EBV and CBV negative kidney. Although I passed all of the tests to be a kidney donor for my daughter, I am EBV positive and after our nightmare experience (that continues), I could never put my daughter at that risk. The transplant team agrees given the circumstances surrounding Jaclyn's experience. Any thoughts?

[cariad]

I don't know my EBV nor CMV status, but I am assuming they are both positive since I am pretty sure it is a requirement for the clinical trial that I was accepted into. Also, it would be pretty rare to get to my age and not be exposed to those. I know my sister had mono when I was still living at home, and I did not contract it, but perhaps I managed to produce antibodies?

That's a tough decision about purposely infecting someone. My suspicion is that I would not play around with this. I had a friend in grade school who was perfectly healthy as far as I ever knew, but I was told that she contracted mono in her mid-teens and it almost killed her. She spent two years at Stanford hospital because of this. Yes, that is a terribly rare and unlucky situation, but I can only imagine that the consequences could be just as bad for a kid who is already renal impaired. We would have mono outbreaks every year at prep school, and it would be six weeks minimum of the person dragging herself from class to class, barely able to function. I don't think I could suggest someone go through that, even for a transplant. I would probably have her wait for a negative kidney.

Sorry I can't be of any help.  Thank you for the information. It is definitely something that is rarely mentioned in transplant.

[jeannea]

I'm positive for both now.  But I was negative for CMV before my transplant. I got CMV from the new kidney.  They gave me 3 months of preventive medicine.  Then I ended up in the hospital for a week with CMV colitis (which is kind of rare) and they gave me IV meds.  Then I took the capsules for another 2 years and then stopped them.  I was then ok with no symptoms for about another 6 years.  I then started having on and off pain which they couldn't diagnose.  This past winter the CMV returned with a vengence.  I spent a lot of time in the hospital.  Due to many things, my transplant failed and I'm on PD now.  But once again I'm not taking any CMV meds and I'm not having any problems with it.  The dotors have told me I can have a new transplant and they'll just medicate the CMV.  I have a great infectious disease doctor now.  I wouldn't try to infect anyone with a virus on purpose.  Just talk to the doctors about your concerns.  They know how to help with these problems.  CMV isn't usually an insurmountable problem.

Jeanne

[Wattle]

Hi Susan,

I am EBV and CMV -ve and my donor (cadaveric) was +ve. They are keeping an eye on me.

My sister had both when we were kids and I never got either of the viruses. By adult hood 80% of the population are meant to have been exposed, some of us just slip through the cracks. I tried while on dialysis to get infected but it never worked!

[cariad]

I am going to my transplant screening day tomorrow (not the list screening, but the final screening for the clinical trial) and because of this discussion, I decided to look into my status. I am EBV+/CMV-. For some reason, they do not know what Gwyn (my donor) is, I think they didn't bother to test because it is apparently a costly lab. I did, however, research this and found this article. It is old - almost 10 years - but it mentions the same transplant drugs I will be taking, and that most people take (Cellcept, Prograf). Here is the link: http://jasn.asnjournals.org/cgi/reprint/12/4/848.pdf

The sentences that leapt out at me are:
"Historically, concern has focused mainly on avoiding CMV
infection in the CMV D+/R- group because this group has
been at greatest risk for severe “primary” infection during the
first 3 mo after transplantation. However, the indirect effects of
CMV infection on graft and patient survival have been increasingly
recognized in recent years. Our own analyses of data
from the United States Renal Data System and United Network
of Organ Sharing revealed that by 3 yr, it is the D+/R+ group
and not the D+/R- group that has the worst graft and patient
survival (16,17). The reason for this is not entirely clear but
may reflect the prevalence of multiple CMV virotypes and that
the D+/R+ patients may have a double CMV exposure with
reactivation of differing latent donor and recipient CMV."

(In case you hadn't figured it out D=donor, R=recipient)

I will be asking the surgeon about this tomorrow if possible and will let everyone know if I find out anything new. I imagine that EBV and CMV both behave similarly, so if Gwyn and I are both EBV+ it seems that could be just as bad overall as if I am CMV- and he is CMV+.

[RichardMEL]

For what it's worth I'm CMV -ve, or was at the last labs they did it anyway...

I have a friend who has had a transplant 13 years ago (still chuffing along) and she's CMV +ve. I know she worries about it a bit, but I'd say she's doing OK given how long her transplant has been going for.