Recent Diagnosis Bronchiectasis

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I am 61 years of age and have been diagnosed with mild Bronchiectasis this year, I've had constant infections from January to mid July, and have now had 4 weeks where I feel well, with no infections, which is brilliant. I am a bit confused as to whether or not I should carry on using the flipper device, which leads me to ask whether the Acapella device is better than the flipper or not. Also I do feel really tired which is concerning me, is this normal whilst in a well patch, is it just part of the condition. 

My other concern is about Carbocisteine, which seem to cause me to get really constipated, has anyone else had the same problem and is there an alternative. 

I have total trust in both my doctor and the chest specialist, but am the kind of person that needs to know all the facts, and would like to hear from fellow sufferers, mainly to put my mind at rest

As you can see from the above, I am confused, and just need to understand my condition, so I know what to expect.

Thanks, Aileen

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9 Replies

  • Posted

    Hello Aileen,

    I am also in my 60s and have mild to moderate Bx. I don't have any experience of the medicines or deivices you mention, but I can confirm that your experience of having repeated infections, followed by a period of being well, is normal for Bx sufferers. The unprecictability of the condition is one of the many challenges Bx suufers face. Responses to the various medications available seems to be as variable as our individual reactions to different bugs. Learning about yourself and your symptoms is as important as ensuring you are on the best medication for you. I alternate two different anti-biotics - Co-amoxiclav and Ciprofloxin when I get an infection. I also use one puff of Ventalin morning and evening. I see the consultants at UCH in London every 6 months and a  couple of years ago one of them put me on Spiriva once a day. This made a big difference to my lung capacity, and it has cut down my infections to about 4 a year on average, but, as I said, this can go up or down for no apparent reason.

    Best wishes,

    John

     

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    • Posted

      Hello John

      Thank you so much for your reply, which is very helpful. It seems we are all as individual in our treatment as we are in ourselves. I have taken more antibiotics this year that ever before, but the one that worked for me finally was doxycycline. I has a broncoscopy because I can not provide a mucus sample, and the result was mild Strep pneumonia, but I suspect this had caused my constant infections fro early January to July.

      The consultant has said that they will need samples of mucus with each infection, so they can give me the correct medication, but try as I might I can not provide the sample!!!!!

      I was prefectly fit and well during Christmas and then early in the new year I became unwell with a terrible chesty cough & completely blocked sinus, and it woudn't go away, which is why the doctor referred me to the chest specialist, and the rest is history. It just shows, we do not know what is round the corner do we!!!!!

      Thanks again, Best Wishes, Aileen

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  • Posted

    Caddie,

    I'm 67 and have had lung issues for 28 yrs.  The last 5 being diagnosised with bronchiectasis.

    The key to keeping away infections is to keep your lungs clear. I use a nebulizer 3 times a day (a small machine that turns liquid meds into a vapor that is inhaled). I also use a precussion vest that 'beats' on my chest. As well as a flutter valve.  These all help loosen the mucus and it's easier to cough up.  I also get into a position where my head is lower than my waist, gravity helps move the mucus to where I can cough it up.

    Stay away from sick people, wash your hands often when out and about, excercise as you are able to help the lungs clear (low impact cardio is best) and eat as healthy as you can. And at the first sign of not feeling well, see your doctor asap.

    Welcome to this forum.  You'll get a lot of good information from people with bronchiectasis and share your own experences.  I have learn a lot from this forum.

    You have support here, you are not alone,  Beth

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    • Posted

      Hi Beth

      Thanks very much for your reply, your information is really helpful. I think my problem is in trying to understand what I am dealing with. I do understand the benefits of loosening the mucus, and have already bought some hand sterilising lotion for when I'm out and about. 

      On the whole I am quite active, and do still work, so staying away from sick people with colds will be somewhat difficult, especially during the winter months. My bosses are aware of the situation, and are very supportive. I had the pneumonia vaccination a few weeks ago, and will have the flu jab annually. It's finding time to use the flutter device that's my problem.

      Thanks again, Aileen

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  • Posted

    For me....Corbocisteine didn't cause that problem. But might a hefty handful of raisins help....? My utter sympathies though.

    Like you, i  couldn't produce any samples and also had a broncoscopy to decide what was going on. However, short of an emergency, i have no intention of having one again. So I hassled for a pysiotherapist appointment and finally it arrived.

    Without doubt this pysiotherapist is an angel.

    * I've been given step by step advice, with homework too. But after a couple of years of not producing anything for a sample, i am now hopeful that Should the time arrive, i now Might be able to fill that little pot.

    * I had all my (very) silly questions treated very politely and helpfully. 

    * the pysiotherapist had the time and the patience to explain in minute detail what bronchiectasis is, how it affects me, how i can help the situation and explaining some of the things in my life which make matters worse.

    Tiredness? 

    I tire far easier these days, even in a 'well phase" and have had to adjust my working and home life accordingly.

    I'm not yet on an acepella or flipper...so will read those answers with interest.

    Best Wishes

     

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    • Posted

      Thanks very much for your help and advice. You have given me a very good idea about the physio, which I will follow up on. I have had a visit from a very good physio here, who has given me some good advice help with breathing exercises, as well as the flipper, so maybe I'll ask to see her again. 

      My overall impression is that it's experience of this condition that determines how we cope. I will see how I am through the winter, I'm dreading it really, and then I'll make decisions about work.

      Thanks again, Aileen

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    • Posted

      I have had constant xhest/lung problems for many years, mostly due to a past non specific atypical tuberculosis, I have copd  & bronchiectasis, I use several inhalers but have not heard of an a acepella or a flipper & am curious as to what they are

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    • Posted

      Karen,

      An acepella and flipper (here in the states it's called a flutter valve) is a small hand held thing that when you blow into it a certain way, it causes your lungs to vibrate a little, loosening the mucus.  I have both, got them when I had to stay in the hospital.  You can purchase them on line as well.

      Beth

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    • Posted

      Thanks Elizabeth, I'm not sure if we have them here, I've been asthmatic for years & not heard of anything similar, I several medicated puffers but for the first time am having difficulty coughing up mucous, these might be helpful, so thank you for the information 

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