Transplant Rejection news

Hi @jackiez I have heard that an incident of rejection is not uncommon and the med adjustment normally resolves things with no further issues. Did they give you a new medication or just increase the dosages of your current maintenance meds? I assume they identified the rejection during biopsy?

Don't give up!! You have come so far!

They transitioned me from tacrolimus to Sirolimus because it’s better for my heart. This was my heart and lung biopsy to see how that was going. So now we are increasing prednisone and staying in Siro for now. I had to hold my Cellcept for a week because my white blood count is low too. The balancing of meds to get optimize all organs is challenging.

Thanks. I think I just need to hit bottom for a day or so and then pick myself up and get after it!

Hi @jackiez 😊
You are soooo right about our balance act of the immune suppression meds. It's such a fine line between rejection and infection for us. I was on 1000mg bid Cellcept and had leukopenia, neutropenia, high liver enzymes, then I got the CMV virus. They lowered my Cellcept to 500mg bid to fight the virus. About 90 days after the reduced dosage I had a biopsy that showed no rejection so they recommended that I stay on the reduced dosage to avoid all the adverse effects. How long after the change from Tacronlimis to Sirolimus did you have your biopsy? I am so happy that they caught your cellular rejection and jumped on it with an increase of suppression! (I assume you had no symptoms so the biopsy and it's timing was excellent so they could tweak your meds). Are you scheduled for a follow up biopsy so you can be reassured that "all is well" now?

Thanks @hello1234 My biopsy was about 6 weeks after the transition. I really didn’t have symptoms and even the Dr was surprised. Not sure if that makes it easier or harder to deal with. I guess it just goes to show you that you have to enjoy every day and never let your guard down. I’ll go back in about a month for another bronchoscopy.

@jackiez
It sounds like good news to me that you had no symptoms and they caught it so quickly after you changed meds...only 6 weeks! I am happy that you are going for a follow up biopsy in one month so you can be comforted that everything is okay now. Did the biopsy say "cellular" rejection?

There’s a lot of info but the main point seems to be acute minimal rejection. It’s all new to me and since it was a Friday afternoon and kind of blindsided me I didn’t have a lot of time to process and have intelligent questions. So I plan to follow up in the coming week with my coordinator.

@jackiez
I agree with you...Friday afternoon test results are the worst. Thankfully, it's Sunday afternoon so tomorrow morning you can call your coordinator with your questions! I am sure she will be able to comfort you with how effectively (and quickly) they are able to resolve acute minimal rejection that is found during biopsy by slightly increasing immune suppression. Please keep us posted after you speak with her!

@hello1234
Thanks so much for the encouraging words❤️