What are you taking to control your GPA... not just the kidney part? When diagnosed in 2018 I was seeing a hematologist because my body stopped making Red blood cells. Once the GPA was being treated 60mgs daily of Prednisone and 4 weekly infusions of Rituxan every 6 months, I didn't need any more blood transfusions to keep me alive. I did, in the process also lose my septum (GPA ate a whole right through it ... as well as my right eardrum. Now, finally in some kind of remission, I just had my eardrum reconstructed at Mayo in Jacksonville. The Reumatologists there did my diagnosis and a treatment plan--then I went home and had my ENT, Hematologist and Reumatologist look at their reports. Not one of them balked at having the research of those on the front lines of research. Once GPA is under control... it stops the destruction in its tracks. My body began making RBC's again. I lrecently learned of a woman whose hearing returned 4 years later). Best of everything to you on your journey. God bless you.
Unflatering photo of me 22 hours post-op, rocking my Van Gogh ear bandage.