Kidney Transplant: Does your creatinine bounce around?

Hi @mariags 😊
It is a pleasure to meet you!
I am approaching my 3 year kidney transplant anniversary. Congrats to your son on his 4 month anniversary!
I had the same WBC challenge at my 4 month anniversary. I was taking 1,000mg bid Mycophenolate and 6mg Envarsus XR (Tacrolimis).
Of course at 4 months, the immune suppression meds are at their highest (and there is normally residual of the immune suppression induction that was given in the operating room).
When I developed CMV, the immune suppression was reduced to 500mg bid Mycophenolate and Valcyte was added as the antiviral med to fight the CMV.
With the reduction of Mycophenolate, my leukopenia, neutropenia and high liver enzymes resolved. What is your son's transplant team telling you regarding their plan to resolve the low WBC? (It's a very common side effect of Mycophenolate).
Did they add Valcyte when CMV appeared and are they planning on reducing the Myfortic or making any changes? Or are they concerned that 4 months is too early to reduce or change?
I assume they are aware of the low WBC and CMV and you have discussed this with the transplant nephrologist at the transplant center?

Thank you so much for responding.
our son is taking myfortic. he was on the highest does of 720 (360 twice a day). Tac 7mg. and valganciclovir, and atonovoque. But once the WBC went to 1.2, and they started him on gastrophil injections, they lowered the myfortic to its lowest dose of 360 (180 twice a day) and the took him off the valganciclovir feb 14. He did a biobsy march 2nd. no sign of rejection or infection. but on march 22nd the cmv results came back slightly higher... normal is 20... he was at 35. so they are just monitoring it. he repeated the cmv test yesterday and it takes 5 days to get the results. so right now they are just hoping his body fights it and did not restart the valganciclovir yet. yesterdays blood results was Creatinine 181 (highest that it has been since transplant (ranged from 153 to 181 post transplat). WBC 2.8 and neutrophil 1.97. thanks for taking the time to read this and offer any experience or suggestion you have had... very nice to meet you. my name is maria

Hi @mariasg 😊
I want you to know that your son's situation is a very, very, very common one and the transplant doctors are used to dealing with these scenarios all the time, every day.
The great news is that the biopsy showed there is no infection and no rejection.
So, now the challenge is just getting the meds and dosages adjusted just right for your son. (It's like a custom suit, each person needs to be adjusted for their body).
"Getting it right" means enough immune suppression meds to avoid rejection, but not too much that allows opportunistic infections to take hold. (I had both CMV and BK at different times with low WBC and each time I had a dosage adjustment until my current cocktail).
The good news is that they actually use infections as a way of gauging if your son is over-immune suppressed, so it helps them to know that if the CMV is increasing again, his immune system may still be too suppressed and it's time for another reduction in dosage or a medication change.
The new CMV level result later this week will let them know what direction to take now.... Another reduction, a change of medication away from Myfortic or something else.... add Valcyte or not, etc, etc.
Please keep us posted when the lab results are back and what the transplant nephrologist says.
Please know that all will be well. This is just part of the process to get the medication cocktail in the "sweet spot".
It feels scary when we go through it, but I can tell you that the team is excellent at getting the meds right to avoid the low WBC, avoid the infections, and also keep the kidney protected from rejection. This is what they do every day.
Feel free to give a shout anytime with any questions that you have....
The Mayo Connect transplant patients on this platform are like a transplant family.
We all help each other with the little challenges that come up during our transplant journey. Your son's current situation is a very common 4 month challenge that will probably be solved by "tweaking" the meds as they monitor the lab results this week 🥰 .... Please update us when you can and give a shout anytime!
PS. The creatinine can bounce around a little, especially the first year. Is your son's doctor concerned or did he say they will just continue to monitor?

i cannot thank you enough and let you know how comforting your message is. so appreciative.
I will pass this along to our son... and see what the doctor says when he gets the latest.
Our son has been trying to do everything as per the doctors orders... but we were not prepared that 4 months in there would be new challenges at each appointment... so we are mentally adapting to that.
the other thing we have been doing "wrong" is that we have shut ourselves to the world... trying not to expose him to any new virus and keeping him safe. so all 3 of us work from home. do our shopping all online and really our social life has been outside with family members or just by phone... we have been used to this thru covid... so just carrying on... but we are understanding that this is not healthy since the "recovery" of a transplant is much longer. what advice do you offer in getting back to living!!??? thanks,
maria

Hi @mariasg 😊
Yes, you are correct that the physical recovery of the transplant surgery is pretty quick. In about 6 weeks, the recepient can drive and the incision is healing nicely, etc.
For me, being over-immune suppressed with extremely low WBC (neutropenia and leukopenia) and infections have been the on-going challenge.
I had CMV at my eight month anniversary, and I just started to turn negative on my BK virus labs after 8 months of biweekly labs (it's still present in the urine).
The good news is that now I believe my immune suppression meds are in the "sweet spot" and my WBC is 4.8. (But remember, I am approaching my 3 year anniversary).
I think protecting your son from infection will always be a priority, but it's critically important during this period of time with his extremely low WBC. Until his WBC is closer to range, he is extra vulnerable to catching something.
Until the team is able to adjust his meds so your son has a reasonable WBC, continue to be extra careful.
Even now, I am very careful where I go. If I go to a restaurant, I go on an "off time" and sit outside with people that I know (I live in Florida), I wash my hands regularly, ask for well-cooked meals, wear a mask in all offices, stores, elevators, etc.
Once your son's WBC numbers improve, you can all start getting out more!
Of course, don't forget that you can all get out now and enjoy a nice walk outside in the morning and evening.
I take my mask with me so I can stop and chat with my neighbors outside and then continue on my walk. It's great exercise, I get to see and socialize with my neighbors, I get some nice delicious fresh air, and nature is so emotionally comforting... I highly recommend it as a family or separately. Also, if there are local parks, walking trails, beaches, etc...they are all great spots to walk even with a low WBC! The low WBC issue will definitely be resolved, but until it is, be extra careful. 🥰

I have had a kidney transplant about 2 1/2 years ago and my creatinine levels do fluctuate currently it’s 1.7 GFR is 46 that’s usually the average on both

Good morning @dougcornoyer 😊
It's a pleasure to meet you! Thank you for sharing your creatinine levels. I think it will be comforting to @mariasg
During your last two and a half years post kidney transplant, did you experience any infection, low WBC, or meds adjustments?

There's been a mistake. Hello1234 intended to just respond to somebody apparently named mariags whereas I'm mariasg. I don't have any children.

Hello 1234, I'm glad you've already reached your 3 year anniversary. Congratulations, and as the song goes, have many more. I hope there's a party to celebrate, maybe with a cake shaped like a kidney and dishes with kidney beans.

Mariags, I hope this is just a bump in the road for your son's recovery and that you'll be able to get out more in the future. You remind me of one of the reasons why I continue to wear a mask when I'm indoors with people I don't know, like at the supermarket. You never know who might need to be protected from other people's germs, and it's everybody's responsibility to protect one another. We need to model good behavior. "I don't like wearing a mask" isn't an acceptable attitude unless there's a medical or mental health reason why a person can't do so.

This looks like a wonderful support group, and it's great that people like hello1234 and dougcornoyer can share their experiences with people who are much earlier in their transplant experience. I wish all of you uncomplicated recoveries and long lives.

@mariasg
It's a pleasure to meet you! 😊 Thank you so much for jumping in and letting me know that I accidentally switched the letters after "maria" in the address! That was very kind of you.
I was wondering if @mariags successfully received my message and now I know why she didn't. (I must have a touch of dyslexia with these contact addresses!).
Also, thank you for the caring words about our kidney transplant journeys. Are you a transplant patient or a member of another support group?
BTW, I also agree with your wise and kind comments regarding wearing a mask in busy places like supermarkets and pharmacies. It's the nice thing to do for the other person that may not have a strong immune system for some reason including transplant, age, cancer treatment, medications, etc.
Thank you again for joining into the discussion!

Hello mariags and welcome to Mayo Connect. I'm so happy that your son was able to receive a kidney transplant and so very kind of his father to donate !!! I am unfamiliar with several of the drugs that you mentioned besides myfortic and tacrolimus. His eGFR sounds good and it did take a while for my creatinine to level out after my living donor transplant 6 months ago. I feel very fortunate to have a wonderful transplant team that I work with via the portal. Without knowing your sons background I would encourage you/your son to reach out to your transplant team. They are a wealth of information.
For now I continue to mask up if I am in a crowded place because of the drugs that we take. Please keep us posted on his progress !!!