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EBV Virus

PostPosted: Fri May 06, 2016 9:07 pm
by lizzyie
I have had my transplant for 7 years.
A month ago I got a sore throat, felt tired and generally unwell....as though I had a cold developing. I rested and just didn't improve so went to see my GP.
My GP did blood tests and said all was ok, my CR was slightly elevated and not to worry. I went back to my GP after a week as my throat was still very sore and I felt tired, he arranged for another blood test.
Today I got a letter from my GP saying I had EBV virus and that he was going to write to the transplant team for advice.
I have looked EBV up and some of the articles I have read are very worrying........has anyone had this virus? and if so how was it dealt with? I have looked on the Forum and some people have said a reduction of immunosuppressants but my match wasn't very good so not sure that would work!
Any information would be great as I have the weekend to get through thinking about it. Thanks.
Lizzyie

Re: EBV Virus

PostPosted: Sun May 08, 2016 2:56 pm
by AmandaClare
I had an initial infection of EBV within a year of transplant and at least two recurrences. It's never triggered post-transplant lymphoma. It's a risk rather than a certainty that anything bad will happen.

Also, if you're googling, make sure you look at up to date resources. Even in the unlikely event of developing PTLD, I believe there are much more effective treatments now.

By writing to the tranplant team, does your GP mean a snail mail letter? I'd be tempted to call and say you have this diagnosis. They may not think it's urgent, on the other hand they might want to physically check you or do more bloods. One time when EBV showed in my blood I had to go for a chest xray.

Hope you feel better soon.

Re: EBV Virus

PostPosted: Sun May 08, 2016 3:32 pm
by lizzyie
Thanks for your reply AmandaClare, it's good to get some first hand information.
Usually the letters from my GP come under the snail mail heading. I will be ringing my transplant nurse in the morning to be on the safe side.
Thanks again for the information
Lizzyie

Re: EBV Virus

PostPosted: Mon May 09, 2016 8:56 pm
by MidgeMan90
Hi,

I have had very low level EBV since November 2011. I still have it now.

Due to an early almost rejection episode, the nephs are unwilling to lower my meds to such an amount to allow my body to overcome the virus.

They just monitor it when I go for clinic and don't seem that bothered about it. Obviously I am very vigilant when it comes to lumps and bumps, but I have had no issues as of yet.

I believe it is carried by most of the human population and tends to 'activate' once your immune system is weakened.

Not too much to worry about, just keep on top of it and you will be fine :)

Re: EBV Virus

PostPosted: Mon Aug 29, 2016 7:37 am
by R30
I also had EBV less than a year after my transplant in 2004, although I didn't - thankfully - get PTLD. I work at a boarding school so there's always a risk that I'll pick up some type of viral infection. What I found was that my transplant started fairly fast rejection with the EBV; I went from 63% function to around 43% in a month and it's declined steadily from there (now at 28%). Having said that, this was 12 years ago and I'm still here!

Don't be too concerned as EBV is a very common virus. Although I was unluckier than some, I've far more to be happy about than some others too.