Kidney
EBV?
March 28, 2026
in Kidney
How often should your nephrologist check the EBV level and when it comes back detected is there a range that makes it more dangerous than another? My son had not had it checked since May of 2024 and I just got tested this week. His results came back yesterday and they are high but I dont know in comparison to what and exactly what this means. I will be calling his nephrologist first thing Monday morning but appreciate all input from anyone here.
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You should call your kidney doctor .
Thank you for responding, I will be calling them first thing Monday morning and sending an email. My son was released by his transplant team in 2024 and has the local nephrologist but I get anxious not having his transplant docs to call.
I had my kidney transplants on july 12 2024.
I had my kidney transplants on july 12 2024.
My Son had his second transplant April 12, 2021 so we are about to celebrate his 5 year anniversary of his 2nd transplant. His first transplant was 12/28/2005 when he was 3 years old.
Transplant Patient
When I had active EBV, they were testing my levels once a month at least. Inactive EBV I was getting them every 6 months on the regular and any sign of anything they'd do a stat order to test them. I still get it tested every 6 months, and I'm 5.5 years post transplant (with no signs of EBV since 2021)
A quick update, drove 5 hours to the transplant hospital ER, 15 hours later, 5 hour drive home, no sleep, no room, no admission and no treatment other than basic labs, xray, ultrasound, no EBV panel ran to compare but a referral to an adult nephrologist at the transplant center which is something to grasp on to I believe and a Covid diagnosis so thats that. I am communicating more with the local nephrologist nurse and explaining the panic and the desire for more monitoring and communication since it has been 2 years since his EBV level was checked and that was only because I requested it due to him becoming symptomatic so hopefully we will have a more solid care plan from the current. Transitioning from pediatric nephrology and a lifelong transplant team to a new team is a MUCH BIGGER transition than anticipated, ( kinda like getting divorced and married all over again,lol) but I am grateful for the fact that we made it far enough to make the transition and that my 24 year old son is realizing he has to be his own advocate,(or have crazy Mom do it forever) and get in touch with his body. Next step is getting him to sign up for Transplantlyfe and connect on his own. I have planted the seed and keep praying!
Transplant Patient
That transition is hard! Both @Dom and I made it, and talk frequently about the HUGE difference between paediatric and adult care. There needs to be more support to fill that gap because I've never met a family that didn't struggle.
A covid confirmation might explain some of his symptoms? I hope you all get answers really soon. And your son is welcome here on TL whenever he's ready! I know forums and support groups can be a bit overwhelming, but even if he just wants to message one person. Feel free to pass along my contact info if it helps. I promise we're not as scary as we might seem over the internet!
You are so right! The transition phase has been way harder than I was prepared for but today I am feeling like we are on the right track and on the same page with his adult doc now. There really needs to be more support during the transition phase and it is alarming that there is not more in place. Hmmmm, my wheels are turning!
@AliEm14 We sure do! I, for one, really miss my pediatric team and the way my care was handled under them. I have had so many of these conversations about how to facilitate the process and to me it seems that the best we can do is just be the best self-advocates we can be. I almost have to predict the issues I might run into just to keep things going smoothly. Even medication refills are unreasonably difficult at times because of miscommunication between people within the team.
@Hummingbird I am really happy that your son was able to get on the right track! Makes me really happy to hear and he is fortunate to have you! We should let our wheels turn together into some ideas and perhaps solutions!
If things look wonky, they should check monthly or bi-weekly. I am two years post liver transplant and I still get monthly checks. Just had my yearly test which includes a check for EVB, and CMV.