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Anyone experience multiple CMV resurgences post kidney transplant?
Transplants | Last Active: Dec 29, 2022 | Replies (107)Comment receiving replies
Hi @caretakermom 😊
My CMV viral load was 64,000, so 1844 is not bad. Is the viral load improving each week?
I agree with you and your sense of urgency that your husband's CMV and low WBC needs to be resolved in a way that avoids a recurrence.
There are two competing principles that are always running in a transplant situation. Rejection and Infection.
Rejection is the number one concern for the Transplant Department, especially in a new transplant. That's why in the beginning, immune suppression is run so high. They don't want your husband to reject.
Infection is the number one concern for the Infectious Disease Department, they work to prevent over-immune suppression and resolve the infection in a way to create antibodies and future protection. They don't want your husband to be sick.
You want BOTH departments working on resolving your husband's second bout of CMV and low WBC challenge.
On Monday, please ask your nurse coordinator for a referral to the ID Transplant Clinic so you can schedule a video consultation with a ID doctor asap. You are not hurting anyone's feelings by asking for a referral. ID is the best department to help drive this situation since it's the second time and he is fighting low WBC.
ID will probably recommend reduction of immune suppression to allow antibodies to form and they are the correct department to answer your questions about that new drug, is Valcyte the best drug and at what dosage, why your husband got CMV twice, concerns about the low WBC and what to do about it, CMV antibodies test after the CMV is resolved this time, etc. You will feel much more confident after that consultation.
I am followed at Mayo Florida. I was just diagnosed with BK virus so my immune suppression has been lowered again.
I hope this helps. Please post after you speak with ID and let us know what their recommendations are and how hubby is doing.
I know this is all nerve-wracking, but all will be well. Breathe.
Replies to "Hi @caretakermom 😊 My CMV viral load was 64,000, so 1844 is not bad. Is the..."
Hi @hello1234, going back to our discussion in late August regard CMV antibodies test. Our Mayo Clinic provider recently ordered the igG CMV test(CMV antibodies). Google says anything greater than 1.1 is considered positive CMV antibodies. We'll be talking to Mayo Clinic soon but am just curious what your provider used as a reference range for positive CMV antibodies. Thanks! Hope to hear from you soon!
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Hi @hello1234, did you see and IDS at your request or Mayo's? It sounds like your IDS adjusted your immunosuppressant meds? My husband just got his 4 month follow up in Mayo in late July and Mayo said everything looks good, nothing remarkable. At Mayo Az, I don't think they refer patients with CMV to IDS. The nurse coordinator says it's common for patients to get CMV, sometimes multiple times, especially in the first year. She also said that the first time my hubby got it, his CVM load was a mere 240 so that is only a little bit compared to some patients who have hundreds of thousands and even in the millions. This time around is the real deal because it's relatively more than the last. I'm not sure what that meant because in my mind an infection is an infection, no matter how small it is. So far in the second/third week, CMV load has gotten worse, from 1144 to 1824, WBC went from 4.8 to 3.1 to 3.0 so it's slowly as Valcyte increased back to 900mg daily. Provider says no change in meds for now and do labs again next week, this coming Monday will be labs. I expect WBC to further drop, based on prev experience.
Your point about seeing an IDS is well taken. The IDS can make recommendations but the txplant team will be the ones who will adjust the meds. I will definitely bring up to nurse coordinator about possibly getting the IDS involved to address this issue if CMV does not resolve.
I'm so sorry you are going thru with BK virus now and I hope your team will help resolve soon. That's another issue that I'm not looking forward to is BK. Did you discover BK via your team or local neph? What do you suspect caused BK, was it due to UTIs? How often do you do labs now that you're 2 year post? When hubby goes back to local neph, pending CMV resolution, I'm going to ask for a standing lab order so that hubby can do labs at least 1x/month or whenever he feels something is off! I'm being pushy because local neph only wants to talk to hubby once every 3 months!!!
Thanks again for responding. I do better hearing from someone who has personally gone thru this and I appreciate very much your inputs.