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...
Type: Posts; User: 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...
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...
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...
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...
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. ...
One other thing Thomas, with all that said.....if you feel like you need antidepressants, then do it. Never feel like a failure just because you needed phych or medical help during this time. We...
Hi Thomas,
My husband has had WG for 12 years, and we have 3 kids who have been raised with a Dad who has a lot of bad days. Since we knew no one with WG, we had to blaze the trail through the...
Hi Malin,
My husband has had several bronchoscopy's done. The procedure is pretty easy, as they give you a general anesthesia, so you won't remember any of it. Rick had no discomfort or pain,...
Hi Cindy,
I am also new to this forum. My husband Rick has WG, and has Bronchial Stenosis, which has effected him that last year. He was diagnosed 12 yrs. ago and hadn't had any previous lung...
Thank you Phil. I will share this with Rick. The infusions are like an IV that Rick does at the hospital. At least that's what they call them here in CO.
Your post encourages me....thank you. I...
Phil,
First, thank you for responding. You are a trooper, doing that balloon dialation every 3-4 months. Good for you...continue to be a fighter.
Yes, Rick had the balloon dialation done where...
Phil, My husband has worked for a long time with several solvents. This really interests me, as he is really not well right now. He has bronchial stenosis this last 10 months. I believe you have...
Sangye, I've never heard anything about silica or solvent exposure related to WG. Where did you hear that?
Thank you Anne. I keep logging on here, so desperate to hear from anyone who knows anything.
Although we've been at this for 12 years, this is one of the worst he's been. Very labored breathing,...
My husband had a treatment done for bronchial stenosis, where they ballooned it out and injected steroids, (broncotophy??) He felt better for only a few weeks. He is not well now and we are...
Thanks for the responses. I will show these to Rick. It gives me hope that maybe some improvement will come from the RTX.
Have a wonderful day!
Sorry about that. RAW vitamin C is the brand. We buy it at health food stores, a vitamin C supplement that's actually raw as opposed to synthetic.
We are not real health food people but this helps...
Drinking hot tea, cider, coffee, and warm soups seemed to help my husband at least feel better...with all the sinus trouble. He also took RAW vitamin C.
Sleep, sleep, sleep...matters so much!
Hello,
I am posting for my husband Rick, who has had Wegener's for 12 years. He is quite ill right now. We have three teenagers who have grown up with a loving Dad that unfortunately was sick most...
The C-ANCA test would tell if he has WG, a specialist in Vasculitis, or other rheumatic diseases would do that test.
Thanks for the reply Pete. The Dr's only said it looked like a type of stenosis. The other WG symptoms haven't improved much w/ Rituxin and Cytoxin infusions. The wheezing and left lung blockage...
Has anyone had WG in their lungs where it closes off your breathing? I've had WG 12 yrs and doctors
said this doesn't look typical of how WG effects lungs. Left lung breathing closed off and doing...