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Finally decided to reach out...
Hi. I have had Wegeners for 10 years now and have had 4 "relapses" since I was first diagnosed. I am 32 years old now, have taken cytoxan + pred 3 or 4 times (the last one was the double-blind RAVE study at Hopkins so I'm not sure if it was cytoxan or rituximab yet, although I should find out soon since the study is now over.) I have also taken rituxan once since the study treatment and now am on immuran as a long-term preventative measure.
I have recurring subglottic stenosis and have had 11 surgeries to open the airway along with one tracheotomy. The last one I had nearly killed me as I had a reaction to the mytomycin-C they injected which blocked my airway in the middle of the night. I could go on and on, but those are the highlights.
BUT, I made it and here I stand with a wonderful supportive family and two daughters, 19 months old and 5 months old. My husband and I were told we would never have children due to the cytoxan, went through IVF and AI with no success, so we adopted our first daughter, and then became pregnant 6 months later. Life is amazing.
I have a full-time job here in Texas and try to live life to it's fullest. For the longest time, I didn't want to reach out to other Wegeners patients or even subscribe to newsletters or message boards as I felt it was a daily reminder of the disease we are living with. I have since come around to the idea and realize what a good support group can do for you, and what my experiences could also do for someone else.
I have a blessed life and hope to live another 60 years to enjoy all life has to offer.
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