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I was diagnosed with bronchiectasis earlier this year, which I have developed after having pneumonia several times over the past 5 years. In 2009 I had radiotherapy for throat cancer, which left me unable to eat and with difficulty swallowing. I live on Ensures, and sometimes they go down 'the wrong way' and I end up with pneumonia. Walking up a flight of stairs exhausts me, and I can't even walk to the local shops. When I drink the Ensures they make me cough like crazy, so every day is turning into a Herculean task; 6 Ensures a day, 6 bouts of excessive coughing a day. I feel like I'm going slowly mad. No quality of life; no matter what I do it makes me cough. Also, with my last pneumonia came hand pain, which my doctor is still investigating. Pain so bad it keeps me awake at night and I can't even brush my own hair. So, has anyone had the surgery, and does it help?

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  • Posted

    LynnCon - I have never had the surgery even though I have had bronchiectasis for 60-odd years.  I suspect mine is milder than yours.  All I can do is send you my sympathy - you are obviously having a very difficult time.  I hope somebody will come along with more help than I can.  Do you attend a specialist clinic for your bronchiectasis?  I am fortunate in being a patient at The Brompton Hospital in London but there are other centres of excellence.  Be sure your GP sends you to one!
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    • Posted

      Hello Operalyn,I have been diagnosed for bronchiectasis long time ago, I am 29 years old, I used to have only one infection per year.

      But since April-2013 till today I’ve had around 6 pneumonias incidents where most of the time I’ve been hospitalized for IV (tazocin) and then only one I had a long nebulizer cure for one month under colistin nebulizer.

      Then after I used to have a long Zithromax cure, but then I again I fall and get sick.

      Since 2008 and I have the pseudomonas, but I wonder why lately I am having that much of infections.

      so back to ur case, u'r on antibio all the time?u have repetitive infections?or only it comes rarely.

      thanks for your advice

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    • Posted

      RAK I have had long-term daily antibiotics in the past but the side effects were so bad for me that they took me off them.  I have had many  infections over the years and in the bad old days I used to get an infection every 4-6 weeks.  These days I have them less often.  I am not sure why really.  I do take daily Montelukast and this seems to reduce the levels of my sputum - nobody knows why!  This is a drug for asthma, not bronchiectasis and I was prescribed it for sinus trouble.  However, it has helped my chest.  I have never, fortunately, had IV antibiotics.  My prevalent bacteria is pseudomonas too, and all I can tell you is that my doctor tells me it is a difficult bug to treat as many antibiotics are not effective against it.  I was on ciprofloxacin for a long time and that seemed to help but then it stopped helping so much and they are trying different things. The trouble with bronchiectasis, from what I can tell, is that it is permanent and difficult to treat and that pseudomonas is one of the harder bugs to get rid of.

      I hope you are doing all the boring stuff like getting enough rest, drinking loads of water, and I wonder if you do postural drainage physio?  Lots of people don't seem to do it these days.  I have been doing it since I was a kid so am used to it.  Mind you when I was young like you I used to skip it and that may be one of the reasons why I used to get more infections.  The trick is to keep the levels of sputum at bay so you don't have so much of the yucky stuff to get infected.

      Good luck and don't forget to keep after those doctors to get the help you need.

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    • Posted

      thx u Operalyn for your prompt feedback.

      well i do a lot of sport basket and tennis which should replace the postural drainage physio no?but i never went through such physio.

      i recently started taking ciprofloxacin but it seems the bacteria started being resistent to that ...

      i will check the Montelukast  u spoke abt, now am looking to check why the infection is being repetitive what is triggering it.

      my dr suggested to do a lobectomy to remove the lung part having pseudomonas & bronchiectasis but donnow yet how efficient this will be.

      i will search over the web for postural drainage physio steps so maybe i can start doing them at home.

      thx u 

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    • Posted

      It's just a series of breathing exercises and controlled coughing which clears the lungs.  It seems to have gone out of fashion - I am old enough to be your granny and I was taught this in the 1950s!  There are other ways to clear your chest I am sure. 

      If you have bronchiectasis in just one part of your lung they do suggest a lobectomy (its a very old operation and has been being performed since I was a kid) but mine is scattered about so no use. 

      Keep trying - and I am glad you can do sport, that is a very good sign.

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    • Posted

      smile  potsural drainage is still the trendsmile btu maybe cz i do sport that's why he didn't advise it...

      yeah it's located in the middle right one, but yeah i ve heard a lot that this is an old fashion surgery.

      to clear out the chest i also use a flute at night , it helps a lot.

      have a good day

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