Hello friends!

I had a couple of questions. I am recently diagnosed with Wegener's. I have involvement in my sinuses (had decompression), saddle nose, and airway. I have just recently finished my first complete round (4 weekly infusions) of rituxan. After having no improvement with my breathing (shortness of breath), my rheumy and sinus specialist ENT wanted me to see an airway specialist ENT. There it was discovered that I have subglottic stenosis. A grade 2. On Friday, I am having a balloon dilation done. She will cut into the scar tissue, biopsy, dilate, and inject steroids. It is planned on being an outoatient procedure. First question is what is recovery like? Trying to prepare for what the weekend will look like with my three kids. Second question is how often have some of you had to have these done? I know everyone is different and some end up having to be trached (not too frightened of that, my son is trached due to aquired SS from long term intubation as a preemie). I just wanted to hear some of your all's experiences. Last, were any of you misdiagnosed? They keep bringing up that I don't fit into a particular Wegener's box and for a while went back and forth about whether or not I had Wegener's or Relapsing Polycondritis. This is why the doc is going to biopsy the tissue from my airway to see if we can get a definite Wegener's diagnosis. The biopsies from my sinuses came back inconclusive. My bloodwork leaned more towards Wegener's but wasn't all that "remarkable". They think it was just caught early. Once I get all this done, I'm considering being seen at the Cleveland Clinic. I'm just north of Cincinnati so it's not far. Any recommendations for who to see there? Anyway...thank you reading and any help you may be able to offer.