Search:

Type: Posts; User: COWG

Search: Search took 0.01 seconds.

  1. Replies
    9
    Views
    2,011

    Phil, thank you. We appreciate you being here :)...

    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...
  2. Replies
    9
    Views
    2,011

    Phil, I have felt bad for you!!! And have kept...

    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...
  3. Replies
    9
    Views
    2,011

    That's correct Phil. He has never reached...

    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...
  4. Replies
    9
    Views
    2,011

    Hi Phil, Good to hear from you again. I...

    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...
  5. Replies
    9
    Views
    2,011

    Anyone had/have severe Bronchial Stenosis?

    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. ...
  6. Thread: Psychologist

    by COWG
    Replies
    7
    Views
    2,213

    One other thing Thomas, with all that said.....if...

    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...
  7. Thread: Psychologist

    by COWG
    Replies
    7
    Views
    2,213

    Hi Thomas, My husband has had WG for 12 years,...

    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...
  8. Replies
    15
    Views
    2,794

    Hi Malin, My husband has had several...

    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,...
  9. Replies
    23
    Views
    3,291

    Hi Cindy, I am also new to this forum. My...

    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...
  10. Replies
    22
    Views
    4,301

    Thank you Phil. I will share this with Rick. ...

    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...
  11. Replies
    22
    Views
    4,301

    Phil, First, thank you for responding. You are...

    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...
  12. Replies
    22
    Views
    4,301

    Phil, My husband has worked for a long time with...

    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...
  13. Replies
    22
    Views
    4,301

    Sangye, I've never heard anything about silica or...

    Sangye, I've never heard anything about silica or solvent exposure related to WG. Where did you hear that?
  14. Replies
    42
    Views
    113,142

    Thank you Anne. I keep logging on here, so...

    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,...
  15. Replies
    42
    Views
    113,142

    Hope for bronchial stenosis?

    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...
  16. Replies
    6
    Views
    1,371

    Thanks for the responses. I will show these to...

    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!
  17. Replies
    17
    Views
    3,385

    Sorry about that. RAW vitamin C is the brand. We...

    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...
  18. Replies
    17
    Views
    3,385

    Drinking hot tea, cider, coffee, and warm soups...

    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!
  19. Replies
    6
    Views
    1,371

    New to forum, from CO

    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...
  20. Thread: Help me please !

    by COWG
    Replies
    19
    Views
    7,598

    The C-ANCA test would tell if he has WG, a...

    The C-ANCA test would tell if he has WG, a specialist in Vasculitis, or other rheumatic diseases would do that test.
  21. Replies
    4
    Views
    1,486

    Thanks for the reply Pete. The Dr's only said it...

    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...
  22. Replies
    4
    Views
    1,486

    Lung inflammation question

    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...
Results 1 to 22 of 22