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Kidney Transplant: Does your creatinine bounce around?
Transplants | Last Active: May 27, 2023 | Replies (68)Comment receiving replies
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
Replies to "Thank you so much for responding. our son is taking myfortic. he was on the highest..."
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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?