Anyone had/have severe Bronchial Stenosis?

[COWG]

I was wondering if anyone has/had severe Bronchial Stenosis, and whether it has improved or not.If so, what meds helped? My husband Rick can only walk about 50 feet before getting out of breath. Currently on RTX, balloon dilations, Cytoxan infusions and 50 mg pred. Also, if you do have Bronchial Stenosis, are you able to work a job?

Thanks so much.

Janet

[pberggren1]

I do have bronchial stenosis due to scar tissue in each bronchi branches but I don't consider it severe. I can walk a fair ways on a flat surface but if stairs are involved then I am out for the count for a while until I catch my breath again. I have not worked any job for over 3 years now due to the Wegs and complications from it.

I am just curious as to why Rick is getting both ctx and rtx at the same time? How long has he been at 50mg? I forget how long ago he was diagnosed? Is he not responding to these meds?

[COWG]

Hi Phil,
Good to hear from you again. I appreciate you communicating, because we are in a difficult spot right now. He was diagnosed 12 yrs. ago, and never in remission. The stenosis happened 1 year ago and has gotten progressively worse. They are doing both Cytoxan and Rituxin infusions monthly. He has been on 50 mg pred for maybe 6 months. He has had 2 balloon dialations in 3 months, however, at the last one the doc said he had less inflammation, therefore didn't need to use the balloon after all. Strange thing , because Rick feels no better, and even worse. We have oxygen at home for night. He is trying to work...our insurance is through his work, not mine. We are trying to see if this will improve before making the big decision to apply for disability.

When we asked the Pulmologist if this will improve, he said it was too early to tell. So, we are looking for any help here. I so much appreciate any feedback. Appreciate prayers.
Thanks Phil.

Janet

[pberggren1]

Rick has not been in Remission for 12 years?!!!!!.....WOW!.....

[COWG]

That's correct Phil. He has never reached remission, or even close This breathing thing is by far the most unnerving, the most exhausting part of all. Was your stenosis worse at any point, and then improved? Also, we can't figure out how the pulmologist feels there is less stenosis, yet Rick feels no better, and actually worse.

Janet

[pberggren1]

I am so sad for Rick. I can't imagine not being in remission. I find that hard to believe to be honest. Because not being in remission means the Wegs is active.

I know what you mean when you say the lung doc says the stenosis is less because my last dilation my breathing was very bad so I called the doc to get in much earlier and he said he has never seen my lungs look that good. I said: Well, that is nice but I go by how I feel, not what you see.

[COWG]

Phil, I have felt bad for you!!! And have kept you in my prayers, ever since I saw your situation on here. Yes, the Wegener's has always been active. Our first Rheumatologist was great, but then he retired. We went to another one who claimed she had seen other WG patients, she was always trying to get Rick off his Pred and methotrexate. It turned out to be a disaster. Long story, but we ended up at National Jewish hospital which is supposed to be a top respiratory hospital in the U.S. Ricks numbers always remained high with symptoms as well. It's like he had a permanent sinus infection, round after round of antibiotics. I could go on and on, but mainly we are at our wits end with the labored breathing. He sounds like darth vadar, and can't breathe to do anything. I'm grateful to have "met" you on here, really. Just knowing someone understands. If I weren't a Christian, I would have lost my mind. Faith, friends and family. I'm thankful that you took the time to listen!

[pberggren1]

I am always here for you Janet. I pray for you and Rick as well. Too be honest, Rick's Wegs was probably not active all those years but probably had symptoms from damage from Wegs and infections and such. If his Wegs was active the past 12 years I think he would be in much worse shape or not even here.

[COWG]

Phil, thank you. We appreciate you being here Well, all I know is his numbers rarely lowered, if at all, and he remained sick all the time. He had several scans to see if it had gone to his brain. He lost his hearing at one point, which was awful. It was due to sinus infection moving into mastoid bones behind his ear. They removed the bone, and did sinus surgery. We would get rid of a sinus infection only to start one two weeks later. His hearing is back for the most part. I do know we have always prayed for him, and so many others. Well, I've kept you on here in this tread for a while. I have appreciated your feedback.

[pberggren1]

Please keep in touch Janet. WE all pray for Rick.