Epstein Barr Virus

[violet]

Hi Everyone hope you are all well.

I have been unwell the last few months, first CMV in June and then Glandular Fever last month. At my 1st annual review my white cell count was low at 1.4 so I was called back in last sunday for a repeat blood test and again yesterday. I just checked RPV and there is a letter from my consultant to my GP saying I tested positive for Epstein Barr Virus. Everything else is stable creatinine 117, white blood cells back up to normal and my immusuppression is 3mg Pred, 1mg Prograf and 360mg Myfortic twice daily. I've been on Valgancyclovir since June so quite suprised to have a virus anyway!

I've never heard of EBV so googled it and am now bricking it!! It says it a major cause of Post Transplant Lymphoma.
The letter actually said positive EBV PCR 120. I've found out that PCR is the test for it but don't know if 120 is particularly high or not. Anybody have an idea??

Has anyone else experienced this virus or know more about it, I'm guessing depending on my results from yesterdays blood test I may get a call from the consultant, otherwise I'm not due back in clininc until early november and I'm not sure I can wait that long to find out what this virus is up to!

Thanks in advance.

[Thumps]

Epstein-Barr is the virus which causes glandular fever, so it's not surprising that you tested positive for it... Certainly if you want to set your mind at rest about the lymphoma thing then call your unit and ask to find out - no reason you should be worrying for two months!

I would expect that if they are worried about the level from that perspective then they'll contact you first anyway - testing for potential cancer-pick-ups is pretty strong in the NHS for people like us (i.e. those already well "in the system").

Hope you get the reassurance you need

[AmandaClare]

Hi,

Thumps is correct, of course you'll be testing positive for EBV so soon after glandular fever. That may not the end of it though as it as EBV can keep recurring. It can pop up when you're run down or over-immunosuppressed and make you feel rubbish (though you don't get the sore throat etc and you aren't infectious).

I tested postive for EBV a few months ago and my consultant sent me for a chest xray and also did a physical exam of glands etc to check I didn't have the lymphoma. (I didn't). I was surprised to find him taking it so seriously - I had glandular fever about a year after transplant and tested positive for EBV again about 5 years in, but no-one seemed even slightly concerned. But maybe they didn't know so much back then - I've had my kidney 20+ years.

I imagine your doctor is confident from when he last saw you that you don't have any worrying symptoms. But if you're worried why not call and try to get an earlier appointment.

By the way, I had both CMV and EBV pretty much simultaneously in the early years of my transplant. I remember how awful I felt. Bear in mind that things do improve as the dosages drop.

Best of luck, keep us posted.
Amanda

[violet]

Hi

Thanks for your responses.

Amanda you've put my mind at rest, that after having both viruses your kidney is still functioning 20 years later!
I've had mine just 1 year and seem to be catching everything, although at least I'm not as ill with EBV as I was with CMV so maybe things are on the up.
I haven't heard from the unit regarding my last bloods so hopefully no news is good news, although I don't have too much faith in them at the moment as I have just moved from the transplant team to nephrology after my 1st annual review and it took 12 days for them to ring and say there was a problem with my bloods, and with the CMV I was rushed to hospital with a suspected heart attack before that was picked up on even after numerous doctor and clinic appointments.

Sorry if I sound whingy, I love my new kidney. I had a pre emptive transplant at 14% because I was one of the rarer blood groups and my donor (dad) was 66yrs old so a case of use it or lose it. I never felt ill before the op, I think I was used to how I felt and didn't notice it, but since the op had some really rough times and sometimes when I'm down wonder if it was worth it. But hopefully like you say when the dosages are lowered I'll stop catching everything bug going and things will improve.

Going off topic slightly but does anyone else have trouble sleeping? I'm really tired when I go to bed around 10-10.30 but still awake at 2am most nights.

Thanks again

Violet x

[Thumps]

Sorry if I sound whingy, I love my new kidney. I had a pre emptive transplant at 14% because I was one of the rarer blood groups and my donor (dad) was 66yrs old so a case of use it or lose it. I never felt ill before the op, I think I was used to how I felt and didn't notice it, but since the op had some really rough times and sometimes when I'm down wonder if it was worth it. But hopefully like you say when the dosages are lowered I'll stop catching everything bug going and things will improve.

I totally understand that. I had mine when my eGFR was about 9-10 (had been15 up until the month before the op), and again it was pre-emptive. I was knackered all the time and taking EPO, but not really what I would call "ill". I railed terribly against the 40-50 tablets each day and mouth rinses and all that other stuff after the surgery, and I felt really awful at times. It took me a good 6 months to get back on an even keel.

I don't think pre-emptive tx patients are given enough guidance on this stuff... You read so much stuff, people quoted as saying things like "after the transplant it was like someone had turned on the lights/put ants in my pants/given me a huge energy boost" etc, and I'm sure it's like that for people who were dialysing (and that it's wonderful!), but I didn't feel like that at all... the reality for some pre-emptive tx patients is that you feel more ill immediately after the surgery than you did before it happened! Mind you, I don't suppose they can say that or people wouldn't go through with it, would they?

BUT - having said that, it was totally the right decision all round and I know I'm very lucky to have avoided any dialysis and now that all the meds etc have settled I feel great

Hang in there, it'll get better!

[amanda in CA]

Thumps, not sure why you describe people's comments about how they feel after a post-dialysis transplant as crap. Actually, how you feel after transplant following dialysis isn't crap because for some of us it's true and i remember plenty of people over the years on this Forum questioning if they should go ahead with a transplant. If by saying something that is true helps people make their decision about whether to go ahead with a transplant, then surely it's a good thing to post about such positive experiences? I think that anyone who can get a pre-emptive transplant and avoid dialysis is very lucky. It is also advantageous from a health point of view which is why it is so promoted these days. surely it isn"t necessary to go through the crap that goes with dialysis (and that isn't just confined to the physical effects of having one's blood cleaned to a small percentage of what normal kidneys would do) to appreciate the benefits of a transplant? When I had my first transplant, live donation was not encouraged so pre-emptive transplants weren't an option. Had they been, and I had been able to ask mt family, I well may not have been in the position that I'm now in with antibody levels so high that a further transplant is unlikely.

[Thumps]

Definitely a bad choice of word, which I've changed, thank you for pointing it out

Of course it's a good thing to hear about positive experiences - as I said, a few months in and I did indeed feel great. I don't regret the decision one iota and I act as a peer supporter at my unit to encourage others to do the same if they have the option (my donor and I regularly go to meetings with pre-dialysis folks to tell them about pre-emptive transplantation and how positive an experience it was for both of us).

Having said that, I do think that as the number of pre-emptive transplants increases, there needs to be a little more acknowledgment in the preparation for recipients who have never experienced dialysis or the worst that end stage renal failure has to offer that the post-transplant journey can be quite an arduous one, and that they may actually feel worse for a while before they start to feel better.

The comment about not wanting to be seen as whingey really touched me - people in our position know how lucky we are to have avoided dialysis. On the flip side, it means we can find it hard to discuss any negative feelings without being seen as whingeing or ungrateful, which is why I wanted to respond to violet's point.

[AmandaClare]

I'm sure both Thumps and Violet know they were really lucky to get a preemptive tx, but it's one thing to know it in your head and another to feel it when you're having a tough time. People have to be able to express their experiences on this forum.

I was extremely ill on dialysis and clearly wasn't going to live much longer. Things that might have helped, like EPO, hadn't been invented. As Amanda in CA says, live donation wasn't encouraged in those dark days, but my parents were about to go for testing in a last-ditch bid to save me when I got the call for a cadaver kidney. Sorry Thumps but I really did wake up feeling like I could run for miles, transformed. My mum says I looked completely different too.

Obviously it's easier to put up with the post-operative discomfort, any infections, the meds and other rubbish if you've been ill beforehand or had all the inconveniences of dialysis. But I'm very glad some people are being spared that now.

[cazpi]

My consultants have spent quite some time explaining that post (pre-emptive) TX I will feel worse before I feel better. Apparently many people feel they have made the wrong decision at first, and it is particularly hard on children, who are often unaware that they are seriously ill before their transplant, and blame the feeling bad afterwards on the surgery.

Obviously I'm not looking forward to the op, because I know I'm going to put myself (albeit temporarily) into a worse situation than the one I'm in. Sometimes, when feeling quite well, it's hard to accept that you need major surgery, and to get your head round the fact that it'll be worth it in the long term. In the meantime I'm enjoying the remaining health I've got, and keep reminding myself that I'm one of the very lucky ones with a good live donor in the pipeline.

[MandyV]

I think that your post tx experience also has a bit to do with your previous experience of surgical procedures - if you are lucky enough that it is limited (or even, better, nil) then you will have the immediate benefits of the tx seemingly somewhat diminished by the experience of major surgery like hospital stays, large wound healing, fluid overload and the rest.

If you are really ill before tx then the benefits are easily isolated, and the negatives recede into insignificance - I always say I woke up post tx feeling like I could scale tall buildings (whilst in actual fact I couldn't get out of bed on my own) - it was a combination of the fact that my creatinine had halved (from over 1200 to the 600's) in a matter of hours and the fact that, compared to other surgery where it is hard to isolate the benefits - often it is to fix something like a hernia or remove tonsils etc and so you feel horrible afterwards and the benefits are in the future; I could see and feel the benefits immediately.

People also have different pain tolerance thesholds (and I found my current tx much less painful than the last number of other procedures) and expectations so I went in thinking that I would probably feel the benefit but would also have all the pain etc I had previously had so I was ecstatic to have a different experience. I have to say that I have always thought that those who have a pre-emptive tx probably find the immediate post tx time a lot more difficult because they have not had the 'preparation' of dialysis and accepting the whole scenario - so much so that, if it were not for the well documented benefits of pre-emptive transplants, I would have said that a short period on dialysis would be a good preparation for the acceptance of the 'being a renal patient is for life, not just for tx'!

Overall it is probably better to go in with lower expectations - i.e. that it is the long game and perhaps get an upside because in fact there is no magic wand and some people are able to tolerate things in a different way from others ...

[jenjen]

Hi all,
Agree with what everyone said about how you feel post-tx depends on what you were like pre-tx. Even though I was on dialysis I was lucky enough to feel very well, in part because my decline was so slow/gradual that I did not feel ill.

This meant the 3 months time post-Transplant was very difficult for me psychologically because the surgery made me feel absolutely awful and I had a few complications with viruses/illnesses etc. Also, the tx did not start working for 4 days and this was really a really miserable time because no-one had really prepared me for this. I totally had a moment where I wished that I had never had the transplant.

Anyway, 4 years and things are going really well (touch wood of course) and though it hasn't made a massive difference to my quality of life as I was fairly well on dialysis at the time, undoubedlty I would have deteriorated if I was still on dialysis. So I agree with Mandy that you need to think "long term"

Jen

[violet]

Hi

I'm sorry I didn't want to upset anybody, I don't want to put anybody off from having a Tx because I know its the best thing for me and I am so grateful to my dad for donating.

Everybody's experience are different I can only comment on my own, I went from feeling normal to feeling like I'd been run over by a steam train, but then I developed a bleed after my op so was opened up twice in 48 hours, had 3 drains, blood transfusion and generally felt rotten. But I do know that on the ward with me and since when I have been in with other problems that some people wake up looking amazing.

I have had periods of feeling like I could run a marathon but unfortunately they have been only for short periods, I've had CMV, EBV with Glandular fever and was rushed to hospital with a suspected heart attack, not to mention the over night stays in the early days for phospate, raised creatinine etc. For a 35 yr old mum of 3 who has never been in hospital except for child birth it did come as a shock. Thats not to say I wouldn't jump at the chance if I needed another kidney because who's to say I won't wake up feeling amazing like the other people on the ward. I was extremely unfortunate but I think I'm more of the exception than the rule!

So please ignore my winge I am blessed to have my kidney I just had a bad day and wanted to moan to people who understand

Thumps thanks for your comments thats reassuring that you get there in the end, hopefully now I'm being transferred back to my local hospital I'll get my pills sorted and feel better too.

[amanda in CA]

It seems to me that a lot of the problem with post transplant expectation arises because there is inadequate explanation of this by medical staff, and maybe this is because of a lack of understanding of patient perceptions by such staff. This seems a sad shotcoming given that there is much more time to prepare someone before a pre-emptive transplant. After all, there isn't that time with a cadaveric transplant where you get the call and you 'go for it'. I guess they could try and explain more during the waiting game but it really isn't real until you get the call. There are obviously both sides to every story and each side has equal value, just different.