Post transplant Epstein Barr Virus

[SooMK]

Hi all,

I just had labs done because of not feeling well and a fever. I had a UTI which is being treated with antibiotics but I've also just learned I've tested positive for the Epstein Barr Virus. I know this isn't good but I don't know if this is likely to just slowly but surely head south or is just as likely to turn out ok. They are adjusting my Myfortic from 360 mg to 180 mg, twice a day. Earlier this year they adjusted my Tac from 1.5 mg to 1mg, twice a day, and then 6 months later back up to 1.5mg.

Anyone have any experience with this?

Thanks for any comments.

[kristina]

Dear SooMK, I am very sorry that you are suffering another UTI, being treated with antibiotics, plus being tested positive for Epstein Barr Virus. Since I have not heard about it before, I was looking it up and it seems to be a virus which seems to come-up in flare-ups and then it seems to go into remission again, perhaps even for years and the only remedy seems to be lots of liquid and lots of rest. I do hope you can take plenty of rest and drink lots and lots of liquid and I do wish you all the best and just want to let you know that I am thinking of you.
Best good-luck-wishes from Kristina.

[UkrainianTracksuit]

Hey SooMK,

I've got EBV issues too. See infectious disease every 6 months for routine checks. If I feel sick, I've been advised to have copies of my transplant ID doctor, and tell the local people to contact them. I was cross matched with my donor. I had no antibodieds to EBV.

I had an episode once. I was put on a short cycle of valganciclovir and went for some rounds of blood work.

Take care and let us know if anything changes in this situation! Your immune system might just do its share of fighting for you in this case!

[SooMK]

Kristina--Thank you for your good wishes. If nothing else, the world of transplant continues to introduce us to new avenues of research.

UT--Thank you for the info. It makes me feel a little better. I'm on my third day of my reduced Myfortic. The last time they did this (I think that was very early on, for the BK virus), the reduced dose was fine, but when they returned me to the full dose it took me awhile to adjust. I remember I started losing hair for awhile and then things settled down.

The Ceftrin I'm on for the UTI seems to have worked well, in terms of the fever, fatigue and lack of appetite--all gone. I feel pretty good except I fear the UTI might not be 100 percent gone. I'll be patient to complete the 14 days of the antibiotic. I found one potential urologist who has transplant experience but it's not clear if he's taking new patients. I have to follow up.

I find every time I use the patient portal to ask a question of my transplant team, I think of another question as soon as I send it. I was worried I would have to cancel my holiday plans to see my new 5 month old grandson but I was told I didn't need to change my plans and I wasn't a contagion to my family. That was the best news. I will wear my mask as much as possible though. I was able to complete a lot of tasks today and the difference between that and spending most of my time laying down just a week ago also helps my mood considerably.

Thank you for your comments. Have a wonderful week!

[kristina]

Dear SooMK and many thanks for your kind sharing your experiences and I am very grateful for our on-going communications, because it shows us, that in a way, we are all “sitting in the same boat” with - of course - some little variations, but it is the same boat all the same and it helps so much to exchange our experiences, thoughts and ideas etc. and ...  our positive communication certainly helps a lot to take away the possibility of feeling isolated. Many thanks again.

I do hope you can see your five-month-old grandson very soon  and I am so glad that no change of holiday-plans had to take place for you and I do wish you lots of fun and enjoyment when you meet again your family and especially your new grandson …

Many thanks again and best wishes from Kristina.

[MooseMom]

Oooh, SooMK, I missed this discussion entirely, so my apologies.  I have no experience with EBV so can't offer any advice, but it sounds like UT has some good words of support.

Do you think your initial symptoms of fever and fatigue were due to the UTI or EBV, or was it just ABC and XYZ?     CKD and being an SOTR sure teaches one how to spell. :We're an alphabet soup population.

The best news is that you don't have to change your travel plans, and you get to see your new grandpunkin!  That makes all of this worth it.  I hope you continue to get stronger.

[SooMK]

Thanks Kristina and thanks for your thoughts MM!

Even though the Clinic NP said that it was just coincidence that I had a UTI and EBV at the same time, I wonder. I may have had the UTI for a few weeks since I'd been dragging myself around for awhile. I've never had fatigue as a symptom of UTI before, in fact actual UTI symptoms were so minimal as to be not much more than ... "could it be? Nah". I'd just gotten over one. What I should have done is use my home test but it didn't even surface to that level. If the fatigue and fever were due to the EBV, why did the antibiotic work to relieve both of those symptoms quite rapidly? I'm wondering if the UTI dragged down my limited immune system giving the EVB its opportunity to attack. Then the antibiotic freed up some resources to go back to fighting off the EBV (I can hope). I am also wondering about this fiddling with my tac and now my myfortic since the beginning of the year, is that a factor? What started my tac trough to go too high and then need to be brought back up? And did I mention I've had at least 3 labs this year where my potassium went into the high range? I almost feel intrigued by all this.

You are so right about the alphabet soup. An acronym that I may not have paid much attention to becomes very interesting once it's assigned to me. I find I do a lot of "I remember reading someone else had..." etc and off I go to search. I continue to add to my medical vocabulary even though I'd rather not. Transplants--a treatment, not a cure, indeed.

I found a possible renal urologist to follow up on. Not super local but 1 hour away instead of 3. Now I just have to make some calls...

Thanks all!

[kristina]

Many thanks again, SooMK for your interesting thoughts. I have also been wondering whether some typical "this or that" -symptoms are getting "blurred", especially when taking antibiotics and it may just again emphasise the fact, that a kidney-transplant is just "another" treatment for kidney failure and not a cure. Sad, but true.

My own experience with potassium is, that as a vegetarian I always have to keep an eye on what I eat. Always a small portion of one vegetable/fruit, to make sure to not "overdo" it about the potassium-level. Sometimes I also have two to three different vegetables in, for example, a soup, but I always make sure that of each vegetable it is just a very small portion. Just after my transplant, one of the doctors advised me to write down and make a list of what I was eating and then to compare it with my potassium-check-up and for me this way was a good learning-process to keep my potassium-levels within limits because of the heart, which can also become vulnerable after the transplant, as I was told.

I wish you the best of luck with the new renal urologist and send you my best wishes from Kristina.

[SooMK]

Thanks Kristina, I have been a vegetarian (well, non meat eating, I eat fish) for a long time. But I've never watched every thing I eat very carefully. I'm also a baker so there's that. Your ability to pay such good attention to your diet is impressive.

I have an appointment with the renal urologist on Dec 22nd. The person I spoke to at this doctor's office was so friendly and reassuring. I'm always struck by how important the people who speak to patients are. They are to me. It can make my whole day feel better. I try to remember to mention it when I see the doctors.

I feel pretty good and am hopeful that my labs in 2 weeks will give me something to feel good about.

Everyone stay well!

[MooseMom]

SooMK, you are so right in saying how important it is to have friendly and helpful staff when a patient contacts a doctor, especially a "new" one.  I am so glad you were able to get an appointment, and I am really eager to hear what the renal urologist has to say!  It will be a learning experience for all of us, I'm sure.  Good luck, and Happy Thanksgiving!

[UkrainianTracksuit]

Hoorah about the renal urologist appointment!

I know it's not the same thing, but when I see my tx doctor (urologist) I'm surrounded by people that need all sorts of reconstructions in that regard! I could be the only transplant patient seen that day. It's nifty.

Anyway, I wanted to address your hypothesis about the UTI, antibiotics, and the EBV being opportunistic/became activated. I support your theory!

During my whole "month from the underworld" that has staggered a bit into November, I found out that I had an active CMV infection. I had no symptoms. I KNOW that if I run myself ragged that I will come down with cold symptoms. It's a sign that I overdid it. During that whole stressful period, my CMV perked up. It was quite a shock to see it was active.

Like you, my immunosuppression drugs were decreased a month or so after transplant because I tested positive for BK virus. It took awhile to come down, but the immune system did its job.

[SooMK]

Thanks for the replies.

[SooMK]

An update: My two week labs were good, my creatinine was "normal" for me (1.02) and my Epstein Barr came up negative. So I thought the clinic would increase my myfortic to 360 again. I asked via the clinic portal about it and was told that no, I should stay on the 180 and get labs done every month until my March appointment at the clinic. So that's fine with me since I feel good.

This week I had my appointment with the renal urologist. Not really though. From the very beginning I was skeptical that I actually would see this doctor himself because he is also head of the transplant department. Also, they never called to confirm my appointment. I never believe I have an appointment if they don't remind me via some method. So I called and confirmed and was told yes, I did have an appointment with Dr Most Important. I was very anxious about this appointment. I imagined I'd have all sorts of intrusive tests as with the other urology appointments I've experienced. As it turned out, I needn't have worried. No, I did not see Dr Most Important because, of course, he was in surgery, so I was told I would see one of the other doctors (this is a teaching hospital, which, in general, I like because the doctors are never jaded). Everyone was very happy that I had proactively filled out all the New Patient Forms I downloaded from their website. The first person I saw was a very nice young man who referenced my forms or just asked me the same questions I had already answered, to get them into their computer system. Then he gave me back my New Patient Forms. No, he didn't want them, someone "out there" would want them (no they didn't, I took them home). Then I saw Dr Resident. Again, very nice person, went over my history, speaking very rapidly, searching the web for my rare genetic kidney disease, felt my belly, admired my transplant scar (I'm very proud of this scar because the surgeon stitched me up, no staples for me) and gave me two scripts to bring to my local Quest for urinalysis there. If there was a problem, they would be back in touch with me. If there wasn't I should call them if/when I get another UTI and I have another appointment in 6 months in any case. The most challenging part of it was fulfilling my agreement with my clinic that I would have the urologist's report faxed to them. Evidently this doesn't get asked too often. Although I can't imagine it is at all useful.

I was relieved that this was all over. It seemed so odd--I didn't even get the invite to create a login on their portal. I do believe that if I actually need them, they will be available. It's just not what I was expecting.

I hope everyone has good holidays and stays healthy. Our Christmas day festivities were cancelled due to (breakthrough) COVID cases in the family.  Strange days.

[MooseMom]

That's great news about your two week lab results, and even better news that you are feeling well.

It sounds like there were some trees that gave their lives for paper forms that you dutifully and pro-actively filled out yet ended up not really going anywhere, after all.

Yep, strange days indeed.  My husband's secretary, the only one in the office that refused to get vaccinated, ended up in the hospital with covid.  She was finally released on Christmas Eve.  She told the other secretary that she was so scared she was going to die.  Thank goodness she didn't risk getting that dreadfully scary risky vaccine, right?

Thank you for the update!

[SooMK]

Thanks MM for the reply.

In today's mail I had a nice note from the NP on behalf of Dr Most Important. On review, he wants me to have a non contrast CT scan. It seems I'm watching the pristine 2022 calendar fill up with doctor and lab appointments.

Hope everyone stays healthy.  Happy New Year!

[MooseMom]

As long as you don't have to put Covid on that pristine calendar!

[SooMK]

Fingers Crossed!