Recurring infections post transplant!

Got the results yesterday and was planning on posting here today, looks like all they found on his full body scan was a little immflamation in his left nasal cavity, mind you he has not taken any antibiotics for the active CMV, so I'm perplexed as to why that isn't showing up, he has a biopsy scheduled for this Wednesday and follow up on Friday, so I have alot of questions!
Thanks for taking the time to communicate with me, still appreciated 🙂

Hi @eaa2025
It sounds like the wbc scan was not very helpful. But I am going to take it as good news that there was no major cluster found. Now that your husband has been off Myfortic completely, has he had any new labs? It's possible that med adjustment was all that was needed to clear up the remaining infection (and develop some antibodies to prevent recurrence). When is hubby's next labs? 😊

Yes not very helpful but as you said no big news, he restarted myfortic that evening after the test, and the cmv didn't show because it's a virus, next labs will be Friday at his follow up, possibly Wednesday before the biopsy, they are thinking that the issue could be with his natural immune system.

Hi @eaa2025
What is your husband's new dosage of Myfortic, Predisone and Tacrolimis?
Did they restart Myfortic at a reduced dosage?
Did they restart Myfortic because the CMV and BK levels are now at a very low viral level (so they feel the immune system is no longer over-suppressed)?

So sorry for the long delay.

He just started back on Myfortic 360mg daily same dose before hold

Tacrolimus is 2.50 daily

Prednisone just got increased to 20mg daily

Started new medication livtencity 800mg daily

His biopsy came back with mild rejection and blood work in 2 weeks and see him in 1 month

Hi @eaa2025
No need to apologize for your delay in responding. I know you had a lot going on with the biopsy and lab work.
It sounds like the biopsy was helpful to let your transplant team know that he needed a slight increase in his immune suppression meds.
I am so surprised to hear that he was having mild rejection at the same time as recurring infection. I thought your husband was probably over-suppressed, but it turned out that he needed to increase his dosage. Now I understand the importance of the biopsy in these situations.
It also looks like they changed Valcyte to Livencity to take care of the CMV. What is your husband's current CMV viral level? Is the BK now negative?
All the other infection pretty much under control now?
I am so happy to hear from you. It sounds like the biopsy showed there is no damage, just a little mild rejection, so that's all excellent news.

They haven't tested again for the cmv or bk recently, so not sure, waiting for urine to come back to see about pseudomonas. They keep referring to him as a complicated case, unfortunately my concern still stands regarding the pseudomonas because it can not be gotten rid of.

@eaa2025 please keep me posted when you hear back about the status of your husband's pseudomonas.
I am very hopeful for improvement this time since the mild rejection shows your husband's immune system is definitely working.
Is the pseudomonas just tested in the urine (and not in the blood)?

I definitely will give an update, it usually starts in the UT but most of the time makes it into the blood stream

@eaa2025 That's the same situation with my BK virus. I had BK in the urine and blood. Then my Transplant team lowered my immune suppression. The BK Is gone from my blood but will always show up in my urine. My doctor explained that if the BK resolves in the urine, that means my immune system is getting too strong. So the goal will never be that my urine has no BK. I have no symptoms from the BK in the urine, but I have regular BK blood tests to make sure it's not in tbe blood. (BK in tbe blood usually needs a med adjustment). I wonder if the pseudomonas is going to work the same way for your husband. Which transplant center do you go to for blood and urine testing? I was transplanted at Mayo.