Recurring infections post transplant!

Good morning @eaa2025
I am just checking in to find out if you received your husband's pseudomonas test result back.
Does the urine test result come back with a viral level or just positive/negative? Will you be able to see if there is an improvement?
I hope you are doing okay. I know being a caretaker and spouse can be stressful because you want everything to be perfect. You are doing a wonderful job! 👍

Good morning, pseudomonas not detected at this time, and off hand I believe it does show a level if positive, however his CMV came back Monday at 205,000, so they are holding myfortic again and lowered his Prednisone back to 10mg daily, had blood draw yesterday to re check his CMV levels that will take a few days to come back, currently still has active rejection and inflammation in the kidney, has an appointment for Monday with his care team. We're beyond stressed out at this point, I don't need perfection although that would be great, I just need him stable. Beginning to think was this all even worth it? And I'm at my limit with hearing he's a very complicated case, those words are not very encouraging. Thanks for checking in!

Hi @eaa2025
Welcome to the world of kidney transplant! My first couple of years involved active CMV with an immune suppression dosage adjustment, then everything fine..., then BK virus with another immune suppression dosage adjustment, then a stomach issue so a medicine change, then signs of rejection so a dosage change. Now, everything is stable, but it's a very stressful time when all these "cocktail" adjustments are going on. It’s easy for me to say don't worry, but I know that's hard to do. Be comforted that the biopsy showed mild rejection and the pseudomonas came back negative. They will probably continue to work on tbe dosages and medical cocktail to handle the mild rejection and CMV.
I am happy to hear that they are retesting the CMV. I had a positive result for CMV a couple of weeks ago and the retest came back negative.
Hang in there, and don't stress too much. It's the first year of the transplant when they need to get the medications right. Pretty much every transplant patient has a very similar story as your husband. Please keep me posted on the results of the retest. And just remember to breathe! 🥰

Sorry to hear you also had issues but glad to hear you are doing much better now, I will continue to update as we continue with the unknown, stay blessed!

Hi @eaa2025
I am checking on you and your husband. How are your husband's labs after the latest immune suppression meds adjustment? Did holding Myfortic, lowering the Predisone dosage to 10mg and adding the new anti-viral med help the new lab results?
I am hoping things are going into the right direction?
Sending love to you both ❤️

Hi @eaa2025
I am just checking in to see how your husband (and you!) are doing. I have been praying that you received good news on your latest lab results. When you are able, please let me know if things are moving the right direction towards resolving the infections (and mild rejection).

Good morning, thank you for checking in, I didn't have any news as of your last reply so I waited when I did have new info, he is currently doing way better, the CMV is at 436 so we are happy about that, he has to do a series of IV infusions because of antibodies or something along those lines, awaiting his urine results now, things at the moment seem to be stable and we'll take that as a blessing! They will be changing his envarsus medication something else, still holding the myfortic and stopped two of his other meds, so as of now he's in good shape, thanks again for checking in and I hope you are doing well.

Thank you so much for this update @eaa2025
It is so wonderful to hear from you!
I am happy to hear that your transplant team has been working hard to adjust your husband's medication and
things are starting to stabilize.
Please continue to keep us posted on the med changes and how things are progressing.
How are you doing? I know these are very stressful times for a new transplant patient (and spouse!). Are you starting to feel a little better?

@hello1234 just an update, hubby's cmv is less than 35, still on livtencity and has completed 2/5 infusions but he seems to be doing very well and I'll take that 😁 hope you are doing well have a great day!

@eaa2025 Thank you sooo much for this wonderful hubby update!! Please continue to stay in contact whenever you can.