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@hello1234

Thank you again Lori for your very insightful and caring response! Yes, I was successfully treated for my invasive CMV infection with 900mg bid Valcyte for 6 weeks. At the same time, Infectious Disease lowered my Cellcept dosage to 500mg bid from 1,000mg bid to give my body a chance to possibly develop some antibodies against the CMV. Now that the CMV is considered resolved, I am concerned about my Cellcept dosage moving forward. I am hopeful that it won't be returned to the full 1,000 mg Cellcept bid moving forward since the neutropenia, leukopenia and elevated liver enzymes have been of concern all along and of course the recent CMV was a major concern. But at the 500mg bid Cellcept, my WBC reached 4.0 this week which is almost in the normal range so I became concerned that maybe my immune system is getting too strong (my Neutrophil Abs was number was 1.2). at 1,000mg bid I am accustomed to seeing a WBC of 2 no where near 4. But maybe 4.0 is not too strong, and is just right.? In other words, I don't know if the current 500mg should be my new Cellcept dosage or not, or 750mg bid...I am trying to educate myself on how this all works and appreciate all of your help!

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Replies to "Thank you again Lori for your very insightful and caring response! Yes, I was successfully treated..."

☺️ My advice to you…from experience…trust your doctors on this. It’s not their first rodeo, though it’s yours. Learn to put the worry on their shoulders. (Yes it’s ok to question them! I’m not saying be complacent because knowledge is power. But they’re following you and responding in your best interest)
They’re obviously on this if they lowered the Cellcept to allow your own immune system to react and make those important antibodies to the CMV.
4 isn’t too strong…and it’s just ‘almost’ in range of normal and may be a good compromise for you. 2 is too low, you don’t want to live in perpetual neutropenia. Subsequent blood tests will let your team know how well you’re doing with the transplant.
Relax, you’re a year out! The critical stage is over so now it’s maintenance and you’re doing great!!! Deep breaths!!! Hugs!!! 😘

@hello1234, I think I read that you received your transplant 1 year ago. I want to ask whether you have had any follow-up post transplant appointments?
I don't know where you had your transplant, but at Mayo, I had a follow-up at 4 months, and 1st year. I continue with annual evaluations at with my Mayo transplant team. I transplanted 12 years ago. In the beginning, my labs were more frequent than they are now. My medications were adjusted often, based on my lab results. Here is my experience: If my memory serves me correctly, I have not needed a immunosuppressant dose change for 7 years, so for the first 5 years I did experience adjustments.
I think you are gathering some great information, but I want to emphasize that your transplant team should already be monitoring your levels. They are the experts, and they alone can interpret your results. The numbers alone don't tell the entire story.

Here is a discussion in the Transplant Group where you can share your early post transplant experiences and meet others: Post Transplant Surgery and Early Recovery: What's normal?
adjustments.https://connect.mayoclinic.org/discussion/post-liver-transplant/

Have you been scheduled for any follow-ups? Do you get routine labs drawn? Does your transplant team get the results?

Hello, Lori and Rosemary offer the best advice! I’ll be 1 year post liver transplant in a month. My WBC is consistently around 4; RBC is 4.52. My liver team has advised that this is good. My platelets are low at 120, due probably to Tacrolimus and the autoimmune diseases I have. So, as Lori and Rosemary have said, we’re all different and just be sure to talk with your team about your concerns.

I eat as healthy as possible and exercise, within my physical parameters, to keep my body in good shape. I have found it works for me to take my meds on an empty stomach for optimum metabolism and always at the same times of day. And, above all listen to my transplant team! They’re there to keep us healthy and answer our questions. We’ve all got lots of questions and concerns as we go along our journey and deal with other health issues that arise. Before I go to see my doctor, I put together a list of any symptoms I have, as well as questions/concerns. I send it through the hospital portal to my doctor and I print it out to bring with me.

I have found Connects to be a great place to share concerns, advice, and most importantly to learn from fellow people who have been on similar journeys. I also consult reliable knowledge, such as from medical publications, to learn about transplant life and my other health issues. It is important to informed on how to best adjust to our medications to keep our bodies healthy. I found the attached articles helpful. I read them and discussed the information with my liver doctor and my team nutritionist.

Be well and congrats on being a year out!