Epstein Barr Virus

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Epstein Barr Virus

Postby Thelma » Thu Apr 14, 2016 6:39 pm

I'm full of grumbles at the moment. I've been summoned to my "local" hospital (40 miles away) for a single solitary blood test for EBV. Despite my complaints about distance/time/huge inconvenience, I've been assured it is VERY important and they really are the "only" place to go to for the test. GPs don't do them and nor, apparently, does anywhere else. Even the samples have to be sent off Bristol from here.... Grrrrrrr

On top of which, I don't even feel ill. I apparently have this virus that I didn't have before and they want to make sure that I've got less virus in me now than before. Still sounds like a bloody inconvenient waste of time and petrol to me. I've done a bit of reading and I really don't see what the fuss is about.

Can anyone convince me that an 80 mile round trip with a small child (I'm a lone parent) after a full week at work (full time teacher) is REALLY worth it? What can they do anyway? Presumably the usual empty words about rest and water and blah bloody blah. Who's got time for all that?

Any thoughts?
Transplanted 31st July 2012 - Vasculitis survivor
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Re: Epstein Barr Virus

Postby AmandaClare » Thu Apr 14, 2016 7:41 pm

Unfortunately there are strong links between EBV and post-transplant lymphoproliferative disorder. That's why they want to be sure your immune system is on top of it.

Since my transplant I've had both initial infection with the virus and at least two recurrences, and no PTLD. The earlier times they found it the doctors were absolutely blasé: but when they found it in my bloods about 4 years ago I was summoned back to clinic and given a physical exam and a chest xray. Like you i was rather bewildered until the neph explained.
Alports Syndrome
Dialysis 1986, aged 14
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Baby boy 2010
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Re: Epstein Barr Virus

Postby Thelma » Thu Apr 14, 2016 8:15 pm

Thanks... it makes a bit more sense now. I wouldn't have been so grumpy on the phone if they'd explained that there might actually be something serious triggered by the virus. God I hate being treated like I'm too stupid to understand things... little bit of information goes a long way!!

I'm almost 4 years post-tx now. Over suppressed for most of the last year (no one would listen to me). Perfect match from a deceased donor. Fingers crossed it's not PTLD: I've enough to keep me busy as it is!!
Transplanted 31st July 2012 - Vasculitis survivor
Posts: 446
Joined: Wed Feb 23, 2011 8:51 pm

Re: Epstein Barr Virus

Postby MidgeMan90 » Sat Apr 16, 2016 4:24 pm

I've had EBV since around 5 months post transplant - I'm now nearly 5 years down the line - and it has never gone away.

I have my EBV level checked every 3 months with the usual gubbins of blood and urine tests.

Mine has bounced around but as long as it is at a low level they don't seem too bothered about it.

I think EBV is carried by the majority of the human race but only pops out once you have your immune system tampered with. The best way to combat it is to let your immune system deal with it, which might mean a slight reduction in immunosuppressants. But then again, it is always a fine balance. Personally, with a near rejection episode in my first year of transplantation, the docs don't really want to reduce the drugs to such a level where my immune system would wipe the EBV out totally, in case it risks another rejection episode - this is one of the reasons I am still on steroids, I think most people come off them at some point, but do correct me if I am wrong.

I'd love to hear how you go on with it. From personal experience, it isn't too much to be worried about but essential that it is monitored to prevent it morphing into something more serious. Definitely worth the petrol!
Diagnosed with end stage renal failure out of the blue - 11/02/2010
Haemo - February 2010 - April 2010
APD - May 2010 - June 23/2011
Transplanted via live donor - 24/06/2011.

Doing my best to look after that kidney.
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Re: Epstein Barr Virus

Postby Thelma » Sun Apr 17, 2016 8:23 am


To be honest, I'm feeling pretty wiped out this weekend. I've slept so much!! I don't feel ill per se, but I'm definitely not right. Grr. Don't have time for this nonsense.

It turns out that the insistence on going such a long way for the blood test is for the paperwork. The PAPERWORK. That's fine... make me add 3 hours+ to the end of a long at the end of a long week for your PAPERWORK. It's not like what's wrong with me isn't tiring enough...

I've been very lucky both with my tx (perfect match, just before I needed dialysis) and afterwards. I had a slight blip of CMV which didn't make me feel any different and now this EBV business. Nothing too serious at all. I'm almost 4 years post-tx.

I just don't have time to be ill.
Transplanted 31st July 2012 - Vasculitis survivor
Posts: 446
Joined: Wed Feb 23, 2011 8:51 pm

Re: Epstein Barr Virus

Postby FoolontheHill » Sun Apr 17, 2016 8:45 am

Sorry to hear that Thelma.

It might be that they have a procedure which means they need to tick a box to protect themselves legally that they are performing their role properly and cant be accused of malpractice. It might be that they are just trying to look after you properly. It might be a bit of both.

If I were in your position I'd try chatting with whoever the clinical director is to see if there can be some middle ground where you are safe and looked after well, and they are protected. If it really is just paperwork, maybe they would accept a letter from you as paperwork. Of course though, what if you do have a problem (of any sort) that they could have dealt with better if they'd picked it up earlier? .. potentially bad for you and them :(

If you 'go with the flow' it's often better.. but you can use a paddle and talk with them about which path to take 'gently down the stream'

keep well
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