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tracheobronchomalacia, please help!!

hi, my name is lesley i'm 42 and live in the uk, in feb 2008 i took ill with what the dr's thought to be a chest infection i was put on long term antibiotics, which never worked from feb onwards my condition got worse quite quickly until august 08 i was admitted into hospital, where i was told i may have a lung disease or chronic asthma, i had several bronchoscopy's done from that date onwards, and was discharged from hospital not knowing all the facts of what was happening, following that in september i went to the royal brompton in london to see a stent expert as i had been told i had quite severe narrowing in my bronchal tubes, they did a quick bronch and sent me home.. i was at this time on several medications.
     one early morning in october i took very ill to the extent where i couldnt breath and felt like i was choking, my family called an ambulance and i was taken onto a high dependancy unit, dr's didnt know what my condition was or how to treat it. my condition quickly deteriorated and within a few days i was put into intensive care as i could no longer risk being awake struggling. surgeons tried to riskily fit a stent but my bronch tubes were so small they could only fit one the size of a premature babys, they discovered that my trachea had collapsed also. after a week i was woken up no closer to bein well than before, i amazed dr's as i started to breath alone and gradually became a little more well each day, i'm home now after months of treatment for viruses (rsv and baby croop) i'm still very ill and not sure im recieving the proper care, my medication dont make me feel better and i struggle after eating i use a nebulizer almost all the time and i may have to have my lung removed. only 1 other count of my condition is registered, wether thats world wide im not sure, i now have the worst stage asthma and stuggle so hard to deal with it as my tubes are so small if anyone has had similar experiences please write, im trying to find anyone else anywhere who is similar to find if my treatment is right and more x thanx x
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Avatar universal
The first approach to treating TBM is a CPAP or BPAP/ positive pressure and a cough assist machine might also help. Coughing is our attempt to clear our lungs and the cough assist helps us with this.  With TBM, we can get air in but struggle to get it out, which leaves us with hyper-inflated lungs and often feeling as if we are choking to some degree.
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1335704 tn?1282692908
Lesley... I just read your post (6/3/2010), how is your condition now? Has it improved? If not email me at ***@****.
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Avatar universal
im trying everyday to find a cure or something to make this easier, my drs have no idea on what to do so i thort maybe trying to do some reasearch or something on the net may help. as i said before im the second diagnosed person with this so it was worth a try x anything is x thanks anyway xx
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372680 tn?1228161610
Your experiences are typically beyond what we get here, so advice giving could prove difficult.  Coughing mucus, while never fun, is typical of asthma, especially attacks.  If you are having this coughing throughout the day, you need to see an asthma specialist again and work with them to find a medication that will resolve that issue.

With that, the number of nebulizer treatments, and your history it's very important that you get this taken care of as soon as possible; it's definately no way to spend your day.

Hope things look up soon.
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Avatar universal
also i forgot to add i have a clear coloured gluey mucus on my chest which feels asthough its in my throat, it feels stuck and causes me to choke. this happens many many times through out each day.
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