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GPA granulomatosis with polyangiitis

Autoimmune Diseases | Last Active: Mar 18, 2022 | Replies (44)

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@cpierce101604q

On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis - GPA. I am a white female. I was hospitalized until April 15, 2017. During my stay I had numerous blood tests, CAT scans, Ultrasounds, Endoscopy, Port put in my neck and then chest for dialysis, blood clots, 2 intestinal blockages, etc. My body was a toxic mess! I had 8 Plasmapheresis, numerous dialysis, and since October 2017 I now do daily in home dialysis using my peritoneal membrane. My kidneys produce urine and that's about all they do. It appears my nephrons were damaged by the ANCA that attacked the major blood vessels in both of my kidneys. My research shows that a large part of the kidney can repair itself, but nephrons never will. I am coming up on 10 months and I am still holding onto hope that my kidneys will come back eventually. I was told I had a very aggressive form of vasculitis. I am looking for other patients that have this exact same disease to share information and hope with. I have a brother that will donate a kidney to me, but I want to use that as a last resort option. I do not like the cons of a transplant. Rejection medicine for the rest of my life for 1 example. My last creatinine check was 2.77 and my BUN is 71. So, I am still in stage 4 kidney failure.Thank you in advance for any positive or hopeful feedback.

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Replies to "On March 18, 2017, at 50 years of age, I was diagnosed with vasculitis - GPA...."

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.