Trish,
thanks for responding - has your treating doctor looked at your lungs? My shortness of breath has been caused by two factors combines, my tracheal stenosis which thankfully is minimal and the scarring on my lungs from the granulomas that were there originally. I receive a CT scan of my lungs two times a year while I'm in remission and every couple months when I'm flaring. I am treated by an amazing team of very knowledgeable WG docs at the Cleveland Clinic. They consult for free with other doctors around the world of patients with WG. Even though I am in remission I still take 25mg of methotrexate weekly. Folic acid daily. I'm off of pred for now but when I was in full flare I was taking 60mg daily. I'm feeling good these days but take nothing for granted, if you know what I mean.
About you - was your trachy a result of stenosis? How long wil you have it and what can you expect once it's removed? Do your docs say you are in remission or flaring? It sounds like you're flaring actively. I'm sorry for your troubles, truly I am. You sound like you live a very active and exciting life. Please be kind to yourself and remember to take the time necessary to heal. It's hard to slow down but with WG we can only take so much. I used to get so overwhelmingly fatigued with the slightest of activities. Now I have much more endurance but still, nothing like preWG.
Hang in there - I love that you can laugh at the situation. The trachy thing flying under the desk, well, that's priceless.
Marcy