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Thread: Symptoms

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    Default Symptoms

    Hi all, I'm new here. My wife was diagnosed about three months ago. Recently she's developed a sort of wheezing sound when she's lying down. This seems to have coincided with an infection the docs think she has in her lungs for the past week or so (pneumonia maybe - she's on antibiotics since Monday). But I can't help but worry that the sound has to do with her trachea (which has not been affected by her wegs previously as far as we know). Pulmonary breathing tests seemed to tell the lung doc that it isn't her trachea, but still I'm concerned. Sometimes she needs to belch but it's hard to get it out, and there's been some vomiting lately too. Any advice is appreciated... Thanks. -Scott

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    Hi Scott,
    I'm sure someone will be along soon with some more specific information for you, I have no experience of trach problems myself. However, I felt I must reply when I saw the suggestion of an infection being the cause. This could indeed be the case and a sputum test should identify it rather than trying random antibiotics. The trouble is that Wegener's also presents itself with the same symptoms as an infection, but they do not respond to antibiotics and things can easily get worse if not checked.
    Don't let the doctors go down the route of chasing an infection that is not there.

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    Hi Scott,
    Welcome to the group! I don't know about trach stuff, either. Others on here do, and can probably help you out.

    I second what Jack said about infection vs. Wegs. After being hospitalized several times over the past 3 months with endless antibiotics in-between, we finally figured out it was Wegs activity in my lungs, not pneumonia. It's very tricky business. Being immune-compromised we're susceptible to atypical pneumonia. But Wegs can look exactly like atypical pneumonia on CT scan! This is what happened to me, and it wasn't until I started coughing up blood that we realized it. Even with a Wegs specialist, it was incredibly difficult to tell.

    All that time (and still, because we don't have it under control yet), whenever I lay down on my side my lungs make a very strange sound as I exhale. Like sitting on a leather cushion-- the whoosh as it compresses. You can hear it in the room. It only lasts a minute or two. Not a wheeze, but a whoosh. Your wife definitely needs to have everything properly evaluated.

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    Thanks guys for your replies. I'll talk to the doctor about the sputum test when we see him on Tuesday. Sangye, did that test help diagnose your current difficulties? I should add that my wife is currently on pred and cytoxan - not sure if that paints a clearer picture or not. Thanks again... -Scott

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    I wasn't coughing up sputum, so they couldn't test it.

    My Wegs doc dx'ed the flare by a combo of :
    1) coughing up blood
    2) abnormal chest CT-- worsening despite weeks of antibiotics
    3) other symptoms of active Wegs (extreme fatigue and weaknesss, sweats)
    4) lack of response to prolonged antibiotics
    all of which led to :
    5) A bronchoscopy, which demonstrated alveolar hemorrhage. But because there wasn't a lot of blood present and my inflammatory markers were normal, the non-Wegs rheumy and pulmonologist discharged me with a dx of bronchitis. When my Wegs rheumy found out the next day, he hit the roof.

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    Doug Guest

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    Scott-

    I had the same issue when lying down. It was something that went away after my lungs cleared up and I stopped hacking out coagulated blood in gelatinous lumps shaped like and about the size of banana slugs. Not a pretty description, nor a pleasant thing to have happen.

    I didn't, however, have the tracheal stenosis issue.

    It took approximately five weeks of hospitalization in three hospitals to achieve that improvement in my lungs, with four weeks of Cytoxan (dosage ?- administered by IV) & Prednisone (80mg/day) therapy plus a week of dialysis, a day off, a day of dialysis plus plasmapheresis, a day off, and another day of dialysis and plasmapheresis. It was the day between the two days of dialysis and plasmapheresis that I realized that the veil of death had lifted, that I felt I had reached the point where I was starting the process of healing, rather than continuing the fight against death. (Sorry to be melodramatic but those of us who've been through it probably all can identify with that moment, perhaps in the way I describe.)

    Prior to that, I had an unproductive cough, post nasal drip (blood and mucus- gad!) that surely contributed to or accounted for the crap coming out of me. I don't know if the lungs, which were a third full of infiltrates, contributed to the gelatinous masses coughed up, but it seemed, when these coagulated masses loosened up enough to come out that the coughs that brought them up came from deep in my chest.

    Like other WG issues, you can see there isn't one answer very often, and each person's experience can vary from the others.

    Cytoxan and Prednisone are a fairly stiff combination for a variety of reasons. The Cytoxan can cause vomitus, and you should mention the problem to her doctor (if she doesn't), so he can adjust her medications or prescribe something for the stomach upset.
    Last edited by Doug; 09-07-2009 at 11:45 AM.

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    My initial dx of Wegs was different than what I described above-- closer to Doug's experience, at least along the "veil of death" aspect (great description, Doug!). I only described my current flare. Nowhere near as good material for a movie script.

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    Quote Originally Posted by Sangye View Post
    My initial dx of Wegs was different than what I described above-- closer to Doug's experience, at least along the "veil of death" aspect (great description, Doug!). I only described my current flare. Nowhere near as good material for a movie script.

    I also speak of my WG experience as "kissing Death on the lips and living to tell about it". Now that's Hollywood if nothing else! What's that vampire movie that's so big now? Like that only with bloodly, little slugs taking over your lungs. Could work!
    Last edited by Doug; 09-07-2009 at 11:47 AM.

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    Thanks again guys. Her cough seems to be improving and we didn't hear that wheezing sound as much last night, so maybe (hopefully) the docs got lucky with the antibiotics. The vomiting has continued but it seems like it's mostly liquid coming up - I almost think she's just having trouble keeping the water down that she's supposed to drink for the cytoxan. She's always hated that. Doctor appt. tomorrow...

    (Still curious about trach. sten. symptoms if anyone else has any input.)

    Thanks again. -Scott

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    Sounds as if it could be a problem with the trachea. I find it much worse lying down with my tracheal stenosis, but also, on any kind of exertion, ie. walking, getting up, going up and down the stairs, etc etc.

    Ask for lung function tests to be carried out (and interpreted properly!), and a CT scan of the neck.

    Check out www.tracheal-stenosis.com where there's a forum, advice etc.

    Good luck x
    Wegeners Granulomatosis diagnosed May 1995. Tracheal Stenosis since 2000.

    Proud mum of 3 beautiful girls, post cyclophosphamide (so it really can happen!) xxx

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