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@caretakermom

Hi @hello1234,
Currently CMV load = 1176, <200 is considered undetected and WBC=5.2. The CMV infection didn't show up until this latest lab, at which point WBC has already recovered. Previously, WBC was low(< 1.0) because both Valcyte and Myfortic were the culprits. WBC recovered after both Valcyte and Myfortic were discontinued.
Myfortic is still on hold, provider wants him to get back on Valcyte and continue with prednisone for now. I don't think they will add back Myfortic at the moment because it causes drop in WBC. I'm not sure if or when my hubby will resolve CMV. It is very persistent and feels like we're just going in circles. The team is expecting his WBC to tank eventually, that is one of the side effects of Valcyte. My hubby is ready to try the new CMV drug but the provider is reluctant to prescribe it. Just very discouraging. We and the team thought he finally defeated the CMV so it was extremely disappointing to see the positive result. The provider/nurse didn't expect a resurgent, esp when he has converted with CMV antibodies!! At this point I don't know what the provider's plan is to defeat this!

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Replies to "Hi @hello1234, Currently CMV load = 1176, <200 is considered undetected and WBC=5.2. The CMV infection..."

Hi @caretakermom 😊
What do you think of the idea of asking your transplant nurse for a referral so you and your husband can have a video consultation with an Infectious Disease doc regarding these recurring CMV infections and frightening low WBC numbers during CMV treatment?
Or what do you think of the idea of sending a message through the patient portal to your Infectious disease doctor? (Normally if you have met with a Mayo ID doctor in the past, you are able to portal them a detailed message and question).
Have you and your husband had appointments with an Infectious Disease doctor after the transplant?
P.S. Also, I wanted to mention the idea of asking your primary doctor to request a Cologuard at home test. It's not the perfect "gold standard" colonoscopy test, but highly effective at identifying pre-cancer and cancer for patients that are not high risk. The test was developed by a Mayo doctor! It may give you some peace of mind and it's very easy to do at home. Nothing invasive. Is the colonoscopy for hubby just a routine screening or is there an active issue that is a concern?