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Thread: Trach/Bronch Question

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    Default Trach/Bronch Question

    So following this last cold I'm having issues with my breathing again. I keep getting mucus buildup in my bad Bronchial tubes. I'm 95% sure that the lung itself is clear now, and this is coming from that area. Basically every 5-10 minutes I'll start weezing again until I cough up some white/clear mucus and then I'm fine again for a bit. My gut tells me the wegs is active in that area again, but it might just be irritation caused by the cold in theory. I'm currently in a "minor" flare that appears to be controlled by my increased Prednisone. Just wondering what other's experience with airways was if this is that or just the leftovers of the cold and I'm taking forever to kick the rest of the issue.
    ~ Bob

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    Hi Bob,
    after a cold and when Im coughing, my lungs doc prescribe to me also Azenil (Zeto) or Roxo (usually for one week). there were times when it helps. and others that not. I also used Sertide Discus but became alergic to it.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    The excess mucous is one of the residual symptoms that is usually present. Mine gets worse at times and becomes a real problem if I get a cold or something worse like bronchitis or sinus infections. I too view these times as minor flares since my inflammation markers increase along with other residual symptoms like increase bleeding in nasal area, more joint pain and fatigue but my treating doctors don't regard it as a serious flares unless it starts attacking my lungs or kidneys again and requires a much more aggressive treatment regime. Their main concern is that I might get pneumonia which is serious, when you have lung damage already and broken immune system, since once we are diagnosed and under some treatment for Wegs, we are more likely to actually die from an infection than organ failure from the Wegs flaring.

    This winter I knew some healthier people who also took weeks to shake their colds or respiratory problems so it is not unusual for us to take a longer time too. I found increasing my sinus rinses and adding a steroid nasal spray helped me a bit along with sucking on lot of cough drops or hard candy. When it gets better i cough less, but there is still excess mucous draining down my throat from my sinuses that I have to clear frequently or it affects my voice or makes me cough or choke even when I am considered in a good stable drug induced remission.
    Last edited by drz; 05-21-2013 at 09:08 PM.

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    Well that's kind of a relief, I think it is indeed just the cold holding on. It bugs me most when I'm sleeping...and I can't use the CPAP because it seems to push the mucus right back down my airway. Might try again tonight.
    ~ Bob

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    Hope it resolves itself soon. I hate not being able to sleep! (not breathing is a concern, too!)
    Mary
    dx'd Janaury 2013
    involvement: lungs, kidney and sinus

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    Dr VF did call me back today and we suspect it might be cold symptoms hanging around due to Prednisone dosage...starting to reduce again tomorrow.

    It seems to get worse as the day goes on. Was pretty clear this morning, but I've been coughing more this afternoon.
    ~ Bob

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    I always cough up stuff every day due to the cavitating nodules in the lungs.
    Phil Berggren, dx 2003

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    My breathing took a nose dive with my last flare...so back in for another Bronch for a look around. Feeling much better otherwise after RTX, but get winded on the stupid stairs again. Not as bad as some folks have it I don't think, but still aggravating. See my Wegs doc again in Mid March so just biding time. Feel ready to start reducing pred from 10mg, but she wants me to wait.
    ~ Bob

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    Hi Psyborg i am so short of breath to, mine happens the moment i put my feet on the floor to do something.Walk washing shower, then when i rest a while usualy sitting down and do needlework i feel fine. After the hospital 2 weeks ago and all the test neg, i went back to my G>P and told him that i dont look forward to this kind of life, he spoke to the ENT again and they decided to give me an inhaler with cortisone and antiinflam to use three times a day, I went and got one and used it , I felt relieve inmediately, and was so glad, but the next day and now into the 7th day no relieve. I read the pamflet said about 4 days I am still pos that it might help. My pred is down to 10mg again and now the arthiritis is worse again, you just cant win. I have still another option. We live at the sea very hot and humid. My kids have landed this morning from the U.K permantly back and we are going to them in a week or so, there it is inland hot dry, i might just breath easy there who knows. I never get colds or flu, i always say i only get illnesses that stay for years no 7 day bugs for me. I found it difficult sometimes when i dont feel well, is it the Weggs or just something passing, cant run to Dr with little things, or that is what i sometimes think. I seem to have forever a septic focus, my eyes are a big problem as the Wegg damaged my tearducts, then my lower eyelashes decide to grow inwards, then it is a toenail suddenly for no reason, what an irratation, at the moment i have lower abdominal cramps coming and going for no reason. Hang in there Ellen
    Last edited by kieshara; 02-27-2014 at 01:08 AM.
    lives on facebook most of the day

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    I'm kind of miserable today. They did the Bronch yesterday and used Cryo ablation on some scar tissue that was causing shortness of breath. But of course that whole area is inflamed today so hard to breath on the left side today. Was wheezing so bad in my sleep that the noise woke me up. They told me I'd have a couple days of worse breathing...so nothing unexpected, but man the breathing sucks today
    ~ Bob

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