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Thread: Bronchial Stenosis

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    Default Bronchial Stenosis

    I met with my pulmonologist today because for about nine months I've had an increasingly difficult time coughing out congestion and it seems like it is getting thicker and thicker, and at one point completely blocking my airway. I didn't think it had anything to with my WG because I'm on MTX, Prednisone and Fluticasone (nasal steroid).

    He surprised me by saying that if a culture doesn't show bacteria that I need a bronchoscopy to look for a possible bronchial stenosis. I've had two bronchoscopy's already over the years and expressed my feelings of anxiety about the procedure to my doc because you're awake, your throat is numb, and they're sticking tubes down it (not a good combination when you're aware) so he is going to do it himself this time and heavily sedate me. Whew!

    He told me not to Google the info about bronchial stenosis because he didn't want that in my head (too scary I guess). So of course I got home and Googled it immediately because I'm more of a 'knowledge is power' kind of person. What I'm finding though is that while tracheal stenosis is a more common side-effect of WG that bronchial stenosis is not. In fact, very rare. So now I'm curious to know if anyone else on this far-reaching forum has been diagnosed, or treated for bronchial stenosis in association with WG?

    Thanks for any feedback! - Shannon

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    I have bronchial stenosis.

    I have had 7 bronchoscopies over the past 2 years. I have always been heavily sedated or put under for all of them. I never remember a thing when I wake up.

    I fortunately have one of the leading cutting edge lung docs when it comes to this stuff with Wegs. In fact I go for another dilation on March 7. I usually meet other Weggies in the recovery room when I have this done.

    Bronchial stenosis is rare in Wegs but I don't know the numbers.

    I would try and find an Interventional Pulmonologist. They are the cutting edge docs that deal with this sort of stuff. But let your local lung doc do a bronch first to see what he finds. If he finds no scar tissue then it could be something else. And he might refer you to one of the other lung docs.
    Phil Berggren, dx 2003

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    Thank you so much for the information Phil! Wow! 7 bronchoscopies! They kept me awake for the first, tried to for the second but my heart was racing so much they finally sedated me. HaHa! That was just mean leaving me awake now that I know you were knocked out for each one.

    It is very reassuring to know that bronchial stenosis is not something to be too terrified of since you have been going this for a while now. I'll let you know what they find out and what their plan is and see if it is consistent with what your doc does. I just need to get this coughing resolved. I fly a lot for business and people really shy away from you on a plane when you're coughing a lot.

    Have a great evening!
    Shannon

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    Let us know what happens Shannon.
    Phil Berggren, dx 2003

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    I am a little worried about tracheal or bronchial stenosis myself, but my doctor, a pulmonologist but not a WG specialist, never acts very concerned about it. I can go for hours feeling short of breath due to a bit of thick mucus stuck in there, but once it loosens and I manage to cough it up, I'm fine. But still I'm concerned. So I look forward to seeing how things go for you, Shannon. Good luck.
    Anne, dx'ed April 2011

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    Has he every suggested a bronch Anne? Have you suggested a bronch to him?
    Phil Berggren, dx 2003

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    Quote Originally Posted by pberggren1 View Post
    Has he every suggested a bronch Anne? Have you suggested a bronch to him?
    I've tried. He doesn't respond like he's seriously concerned. I think I'd have better luck suggesting it to my ENT. He has done laryngoscopies on me before and I don't know know how much lower he'd be willing, as an ENT, to go.
    Anne, dx'ed April 2011

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    Have you had breathing tests done in the past and recently? Is your breathing getting worse? How are you with stairs and hills?
    Phil Berggren, dx 2003

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    I've had breathing tests done, but just with a little hand held tube thing in his exam room. I don't know if there's something more advanced I should be getting. I'm usually OK while at my appointment. Being in a flare just recently, I was a little worse than usual, and he upped the pred because of my complaints about breathing problems, in addition to having upped the MTX. I am definitely doing better since the med dose increases, though not out of the woods (are we ever?).

    I haven't noticed any problems on stairs, and small hills like my driveway are OK as long as I'm not aware of anything in there that needs to be coughed up. I do need to try some longer walks that include small hills. So, it is hard to say. Right now, sitting here, I'm not having trouble breathing or coughing, though I don't think I'll ever be like pre-Wegs. Getting past this flare will tell me more, I guess.

    Thanks for your attentiveness, Dr. Phil.
    Anne, dx'ed April 2011

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    Sounds like you are doing very well then. You are probably fine in that department.
    Phil Berggren, dx 2003

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