EBV after kidney transplant: When did your symptoms go away?

Posted by kayb @kayb, Apr 13, 2022

I am almost 3 years post kidney transplant (4/16/19) I’ve been feeling “off” so my primary doctor ordered labs. I found out last night that my EBV come back as positive. curious about others who have experienced this post transplant. How long was it until your symptoms went away? It’s difficult to be this fatigued and feeling yuck with 3 kids 😞

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Colleen Young, Connect Director | @colleenyoung | Apr 15, 2022

@kayb, I'm so sorry to hear that Epstein-Barr virus (EBV) has returned and that you're feeling poorly. From what I understand, immunosuppression following solid organ transplantation can increase the risk of EBV. Most adults are EBV positive, and the virus remains in a latent phase with potential for reactivation. Sounds like the virus was reactivated.

What treatment is your transplant team suggesting for you?

kayb | @kayb | Apr 15, 2022

Mayo Clinic has not responded to my call. My local nephrologist said he was going to try to figure out more but haven’t heard from him since Wednesday. My primary care doctor hasn’t called at all 🤷🏻‍♀️ I often fall through the cracks

Lori, Volunteer Mentor | @loribmt | Apr 15, 2022

In reply to @kayb "Mayo Clinic has not responded to my call. My local nephrologist said he was going to..." + (show)

Hi Kay, I’m really surprised you haven’t heard back from your transplant team at Mayo. Usually they’re very prompt with replies when there’s a medical decision to be made. How frustrating not to hear from any of your doctors, especially when your PCP provided the test that discovered the return of your EBV. It’s easy to feel like you’ve fallen through the cracks but keep being proactive.

I use my Mayo portal to contact my transplant team and usually hear back within the hour. Have you tried using your Mayo portal for a direct message?

Rosemary, Volunteer Mentor | @rosemarya | Apr 19, 2022

In reply to @kayb "Mayo Clinic has not responded to my call. My local nephrologist said he was going to..." + (show)

Hi, @kayb. I want to drop in this morning,. I realize that the Easter weekend might have caused some delay with correspondence and I know that can feel like an eternity. How is it going for you?
Have you received any follow up response from any of your doctors?

kayb | @kayb | Apr 19, 2022

Thank you for thinking about me. I have heard from Mayo a few times about my 3 year post appointment and new lab orders but not about this. I really don’t think I will hear back from them 🤷🏻‍♀️ My nephrologist in Seattle has been in touch and is ordering more labs.

Terri Martin, Volunteer Mentor | @windwalker | Jun 4, 2022

In reply to @kayb "Thank you for thinking about me. I have heard from Mayo a few times about my..." + (show)

Kayb, Just curious, how did your correspondence turn out with Mayo? Did they eventually get back to you? Was it too much of a time lapse in your opinion?