EBV - How do did you get it checked after transplant?

[UkrainianTracksuit]

Hi guys,

Sorry to be out of the loop here - life is just a giant mess.

But, I just learned that I was discharged from Infectious Disease 4+ years after transplant after blood work every 6 months to check my EBV levels. I didn't receive a letter or anything but rather called to see why I didn't receive my usual blood work requisition. The receptionist at the desk is no help and wouldn't pass on my message to clarify why.

So, I was EBV negative at transplant and cross matched. I see my transplant doctor but he has nothing to do with the EBV side of things.

How long after your tx were your EBV levels tracked if cross matched? Would I be able to ask to my regular renal time to tack on the test to my regular blood work just to monitor levels? Thanks.

P.S.: Is it just me or do EBV problems also seem to happen outside of 6 months of transplant? Like people transplanted awhile have had issues too? I know I did, but I wasn't so late into it at the time.

[kristina]

Dear UkrainianTracksuit and I want you to know that I am thinking of you and what you are going through and I do hope there is a chance for all of us to soon wake up from this totally mad and most distressful Russian-Ukrainian-nightmare.
About EBV: I am not aware that my blood-tests were ever specifically checked about EBV-levels. So far, I only had general blood-tests to check-up how my transplant-anti-rejection-medication “works on and for my body” and I also have a regular check-up on my (very little) transplanted kidney function i.e. whether or not it is deteriorating too much too quickly. My remaining problem is unfortunately this debilitating chronic pain just underneath the transplanted kidney and one theory is, that the nerves “around there” were cut and damaged “in a big way” during my transplant-operation and that they might hopefully repair themselves one day... I have no idea how this could possibly happen, but I still clinch to the hope that perhaps it might …
I do hope you soon get some positive answers to your question about EBV-levels etc. very soon. I have been looking it up on Google and I am very sorry about your concern about it.
Please take great care and I send you my kind regards from Kristina.

[UkrainianTracksuit]

Hi kristina,

I am sorry to hear that you are trapped in a lifestyle of debilitating pain that seems to be linked to nerve damage from the operation. In regard to your tests, I don't think all transplant patients have to be explicitly worried about it if they had antibodies for it ahead of transplant. (Someone will correct me if I am wrong, I am sure.) These sorts of things are checked in the preliminary testing days. Since I had no antibodies to it ahead of transplant, I was followed all this time, with regular interval blood work. Only now to find out that I am not followed...  But, anyway, I asked my local renal team to add it on to my regular blood work, and they are fine with that.

In regard to the "special military operation", my husband and I have opened up our home to a Ukrainian mother with small kids that fled. It is a tough position for my husband but at least his humanity is greater than his patriotism. I won't say too much, but this takes up a lot of my time these days.

Anyway, don't want to turn this into a military thread, but rather just Epstein-Barr silliness. 

[Simon Dog]

As an interesting bit of trivia, Belatacept (monthly anti-rejection injection) can only be used on EBV+ patients.