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Diagnosed with GPA in Bonn - Germany
Hi all,
I have till now observed and read members' stories and I now think it's time to introduce myself and tell you about how my Wegener's "adventure" started and where I stand now.
I was diagnosed in Bonn's UKB (University Clinic) after a while in the ICU for what was thought to be a lung infection. Tested two times against Covid-19 and resulted negative, no "influenza" or other common infections so the doctors started to suspect something. I have been under induced coma for two and a half months, starting from the end of March 2020.
I unfortunately had to be intubated three times, one at the beginning and two others due to lung infections I "picked" in the hospital (one not identified source and the other because of the ventilating machine).
A tracheotomy had been performed on me and I could not speak for a long time so as to express in a timely ad detailed matter what was going on and noone was allowed to visit me because of Covid.
I felt abbandoned and had a really hard time. I was saved only by miracle as they keep telling me even now. Nobody thought I would have made it to stay alive. Glad to have proved them wrong
What worries me the most, now that I am at home and under maintainance treatment with Prednisone and some other medicine, is that during the various operations and apparently since the end of May 2020 I completely lost vision from my left eye. After visiting the ofthalmologist he spoke about the optical nerve being in a bad condition after a probable ischemic episode. On the other hand I entered the hospital with no problem whatsoever related to my eyes. So I find it quite a coincidence that it happened in there. I just wonder if the culprit instead of Wegener's disease, could be the high dose of cortisone and Rituximab that was used during the first days of treatment. I mean, I am grateful to have been saved and that doctors focused on preserving my life. But I would like to know if someone else had similar experiences. And if they found a way to restore vision (my doctor said this is not reversible, being it a nerve damage).
Also my left ear was diagnosed with hearing loss, associated to GPA's action. But after two months I visited another doctor and folowing a very thorough testing, my ear resulted as being fine and in pretty good conditions for my age (I am 46 now). That was really a relief, even though I still have some disturbance (water moving sensation) into my left ear, especially when I eat and drink.
Well, thank you once again for letting me join the forum and I will, hopefully soon, write more about my story and condition.
Last edited by ilias; 09-28-2020 at 04:26 AM.
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