Hi Adith,
I'm so sorry your mother is doing so poorly with her breathing! I can tell you that even though I had lung granulomas seen on CT scan and I was diagnosed with a lung biopsy, I feel more short of breath now and my lung granulomas are almost completely gone thanks to the Rituxan infusions I received and the high doses of Prednisone I've been on. I was just diagnosed with Wegener's GPA on Aug 1 2016. I did have some breathing discomfort but I feel more short of breath now and I think it's probably due to the prednisone side-effects. I was on 60 mg pred for 6 weeks and then 40 mg pred for 4 weeks and yesterday I was told to further taper my prednisone. I do not have the loud noisy breathing that your mom has however.

My trouble started in my ears too like your mom. I had really terrible ear pain and fullness and then they put tubes in my ears and I had profuse drainage until I was diagnosed and treated for Weg GPA. My ears then got better and my lung granulomas shrunk. I also have sinus drainage daily.

I wondered if your mom has tracheal stenosis. But you said the ENT does not think so. How do they know? Did they look down her trachea with a scope at all to see if there was airway constriction? I don't know what that procedure is called but maybe it should be done if it hasn't been.

If the ENT is correct that it is mucous in her throat, maybe it's from sinus drainage and a saline sinus rinse would help with that. I highly recommend the NeilMed Sinus Rinse kit (Sinus Rinse Regular Kit)

Have they done a CT Scan of her lungs or just an xray? Sometimes (and it happened with me) granulomas don't always show up on chest xrays. My chest xray only revealed 1 granuloma, but the CT scan showed 3 granulomas and 2 nodules. So she may need a CT scan to REALLY see what's going on in her lungs.

If there is no mucous, or lung granulomas then it could be the prednisone making her feel short of breath. Like was posted before, prednisone (while also very helpful) has many unpleasant side effects including shortness of breath, puffy face, eye pressure, and anxiety (which can also make you feel short of breath) .

I hope some of what I have posted helps you.

Sincerely,
Gabrielle