Hi all! Can a transplant patient have normal WBC, Neutrophil Abs, and Lymphocyte numbers or does that mean your immune suppression is not high enough?
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I don’t know the specific answer to your question. As you’re aware, solid organ transplant patients are on anti-rejection drugs for the rest of their lives and always puts them at higher risk of infections.
Anti-rejection drugs are immunosuppressants. They work by reducing the response from the immune system to reject the new organ. It is necessary to do this life long because the body will always consider the new kidney, liver, heart, etc., an invader.
Can the numbers ever be normal? Compared to the general population not being on immunosuppressants, probably not. But for a transplant patient on the meds, each person’s new normal will be the white count you have with the minimum amount of immuno-suppressant necessary to avoid rejection. You’re not dialing into a specific amount of white blood cells. You will need to take immunosuppressants to some minimal level and your white counts will fall out where they will. This can be different for each person, depending on your own immune system, the closeness of the tissue match of the donor and how aggressive your immune system is towards it. This is a very individual response and can be determined by the transplant team for each person.
What you don’t want to do is use more than necessary. This is where you team should be adjusting the dosage.
I hope this is helpful but bear in mind I’m a bone marrow transplant patient and have no experience in solid organ transplants. However, we share a lot of the same medications and concerns over immunosuppressants
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Thank you so much for your detailed response Lori! The information you provided is very helpful to me. Do you have regular lab work that includes Mycophenole Acid test and MPA Glucuronide to determine your Cellcept levels? (One of our wonderful Mayo Connect family members mentioned these tests and I am wondering if they may be helpful to determine the optimum Cellcept dosage for me.). I am going to mention it to my Coordinator, but I was wondering if anyone had any first hand experience with these tests and how they are used? Thank you again for being so caring. I am very happy that I joined Mayo Connect this weekend!
We’re happy you made the “connection” in our family, too! ☺️ We’re all here to help each other. Explore the site and you’ll find over 70 groups covering a gamut of health issues and some just for fun.
Were you searching for specific answers that brought you to Mayo Connect?
I don’t take Cellcept. I’m currently on Tacrolimus and as @rosemarya mentioned that’s monitored with my monthly blood tests from my local lab and is sent off to Mayo for processing, along with a CMV kit to make sure the CMV that came in with my new immune system isn’t rearing it’s ugly head.
The tests you mentioned are not on my blood panels so I can’t help you there. You’re asking some great questions so keep a list for your transplant team. When is your next appointment?
Here is some information on the Mycophenole Acid test and MPA Glucuronide tests on the Mayo Clinic website.
Thank you again Lori! My main concern is trying to understand the process for avoiding over-immune suppression (at the same time avoiding rejection). I was happy there was a scientific answer for balancing tacronlimis (Envarsus XR), using a blood test, but disappointed that there wasn't an objective blood test for balancing the Cellcept level. The good news is, one of our fabulous Mayo Connect family members gave me the test names that I was looking for! So, I am going to ask my Coordinator about adding these blood tests to my next lab visit. I have on-going neutropenia and leukopenia and I just recovered from CMV, so I am super sensitive about over- immune suppression. How long has it been since your transplant? I am officially at one year!
Congrats on your transplant anniversary!
@hello1234 You’re most welcome. I’ve learned so much about the immune system over the past 2 years. It’s vital to our existence and incredible in complexity. It can defend us or turn on us…it’s a fine line.
I can certainly understand your wanting to avoid being overly immuno compromised. It would surprise me if your team isn’t monitoring the Cellcept level in your blood. It might not be directly through the tests you mentioned if they haven’t shown up on your procedures your medical records. But it would include the usual CBC and a chemistry panel of electrolytes, BUN creatinine, glucose, ALT, AST, bilirubin, and amylase, possibly an LDH. Together they will be telltale signs of how well well your new kidney is functioning, check for tissue damage and if there’s any signs of inflammation or rejection. But definitely ask and express your concerns to your transplant team. They are your best source of advice for your personal transplant story.
Do you have monthly tests run? Initially I’m guessing they were more frequent.
Did you have to take any medication for the CMV?
Has your Cellcept been adjusted since the initial dosage at the time of transplant?
Congratulations on that all important and most difficult first year! It’s easy to feel overwhelmed but as time passes you’ll have less concern as you settle into that new sense of normalcy. Things won’t ever be exactly the same as life before transplant, but we have the ability to accept, adapt and move on!
Last week I celebrated my 2nd rebirth day and feeling ‘fabulous dah-ling’…and grateful beyond words. Monday I head back to Mayo for all my birthday tests! LOL There’s a bday gift…full day of labs, tests, biopsies, vaccinations and appointments.😂
My cancer and subsequent BMT tale hasn’t been without some challenges but I can tell you it’s been one incredible journey and every day is a gift. I’m sure you feel the same way! We got a second chance. ☺️
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!
☺️ 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?
Have you been scheduled for any follow-ups? Do you get routine labs drawn? Does your transplant team get the results?
Thank you so much for this caring and beautiful response! You know exactly how I am feeling and what I needed to hear. I can't thank you enough for being so loving. BIG Hugs right back to you!! …..And I am going to try to take your excellent advice and "breathe"! Love to you 🙂
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