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bronchiectasis/pseudomonas

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I am here to find patients like me with Bronchiectasis and the complication of chronic Pseudomonas Aeruginosa. I am intersted in knowing what kind of treatments they use to stay healthy. I have had theP.A. for seven years but do not have Cystic Fibrosis.[/b]

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  • mizsuzyq
    mizsuzyq Guest

    Posted

    Hello Guest,

    My routine consists of the folling: 

    Acetylcysteine 3mil in nebulizer 3 times per day

    Acapella Flutter 2 times per day - there is a special routine that you do with this device and it is amazing how much mucus you can get out.

    The Vest 2 times per day (which is used along with the nebulizer). This is the same type of equipment that CF patients use. This is a godsend. It helps keep the mucus loose so you can expel easier.

    BiPAP machine - at night, which I cannot stand to use. As you know we sleep little as it is. (I do not use this anymore, I never did like it).

    I am so sorry that you have this horrible disease.  On top of the Brochiectasis, I have TBM (Tracheobronchomalacia), because of this issue, it is harder for the mucus to be coughed up and expelled.  

  • gin052794
    gin052794 Guest

    Posted

    Hello mizsuzyq and everyone who had shared their stories here.

    I am so glad I found this site. I live in USA, and I haven't found a good doctor who can give me the correct diagnosis. I've been since 1998 going to lung doctors because the symptoms, but they would just said there were some spots in my lungs that they needed to follow up in case it becomes cancer (I am a breast cancer survivor twice!). They were giving me common cold medicine. In 2012 a new doctor told me that I have bronchiectasis, but that he could not give me anything because it did no have cure. He gave me some antibiotics, and sent me to have a test of my sputum (phlegm). My problem is that I cannot get it out, and I explained that to him several times. I know they are procedures to help you expectorate, but he did nothing.  I stopped going to doctors, but my symptoms are worse. Everything you guys have described, shortness of breath, always without energy, cough, I feel my chest heavy, palpitations, cannot sleep flat; I need three pillows, etc. Now I am thinking after reading mizsuzyq post,  that I might have tracheobronchomalacia. I have to keep looking for  a good doctor, you guys at least have a diagnosis and medication. Again, thank you for sharing!

  • debbie15945
    debbie15945 Guest

    Posted

    I have been diagnosed with bronchectisis for over 3yrs now i was first diagnosed with a pseudomonas infection firstly. I had a cough for over a yr had several antibiotics nothing helped till they finally did a sputum test and sent me to a specialist then she did many tests a ct the last one and was diagnosed with bronchectisis.

    They also found my sinus were compacted on one side and had to be operated on.

    I have had cipro antibiotics several times the first time i had them it i got rid of it, but kept getting other infections. Last year i had antibiotics for most of the year my specialist decided to try

    I.v antibiotics for 3 weeks and 3 weeks of cipro it improved but wasnt eradicated

    That was in October in January i had i.v antibiotics again for three weeks and gentamiacin nebulizer for 3 months along with cipro for three months

    And it cleared it, there was no pseudomonas present when i had a sputum test.she said it will come back as she thinks it has colonized but for now it has gone.

    My cough has almost gone and hardly bring up any mucus and if i do it is clear.

    It is now September i have had a cold lately and my cough is coming back slightly but otherwise i have been healthy and no antibiotics since april

    Hope my story can help anyone out there.

  • ian05294
    ian05294 Guest

    Posted

    go back to your GP and ask if you might be suitable for a drug called Erdostiene or Carbosysteine for the Bronchiectasis. these drugs help reduce the production of phlem.  To help with the Pseudomonas ask him also if you might be suitable for Colomycin a nebuliser drug to keep this pest at bay. Pseudomopnas is a sod of a bug to get rid of so ask you GP on whether this would be good. Failing that ask him to be referred to your Respiritory consultant and ask them. Hope this has helped. I know you posted over a year ago but ive only just joined. Ian
  • Pamathatteras
    Pamathatteras Guest

    Posted

    I am so happy to find this!  I am in U.S. And do not know anyone with bronchiectasis let alone pseudomonas.  I was diagnosed 8 years ago and am right now having my 4th exacerbation.  Every 2 years this happens.  I am still being treated with Cipro, a low dose this time.  Last time I took 500 mg twice a day fir 10 days and lost a huge portion of my taste and smelling ability.  I requested the lower dose, but 5 days in still feel feverish.  Am using an inhaler, but don't normally, nor do I use my accapella like I should.  My pulmonologist had me on azithromycin 3 days a week but took me off after my regular doc made a comment about it.  My pulmonologist has released me, says my pulmonary tests are all good and he's not needed at this time.  No one has been able to explain to me why I have NEVER FELT LIKE MY NORMAL OLD SELF since my diagnosis.  I lack the energy to work a full day, my motivation is gone.  I just feel half crappy all the time.  Is this normal??
    • debbie15945
      debbie15945 Pamathatteras

      Posted

      Hello Pamathatteras

      I live in Australia

      I was first diagnosed with a pseudomonas infection after having a cough for nearly a year then I was sent to a respiratory specialist she did every test I could have done and found I had bronchectisis

      I also have chronic asthma type 2 diabetes

      I have had cipro anti biotics about 6 times

      Sometimes in 3 week doses up to 6 weeks

      The last lot was in January i had a pic line in and had 3 weeks of i v antibiotics then 3 months of cipro and gentamiacin antibiotic through a nebulizer and it worked I got rid of the psuedomonus felt great no cough even

      A few weeks ago i got a cold and its back

      I dont need a test any more i can tell by the colour of the phlegm

      My specialist told me it has colonized and it would come back

      I too get extremely tired i cut down my hrs at work as it exhausted me also.

    • Pamathatteras
      Pamathatteras debbie15945

      Posted

      Hi Debbie!  I am so glad to find this site and see how others in different countries are being treated.  A lot of different treatments.  I'm very lucky so far.  I told another person I'm starting to wonder about mold.  My doc has only 2 bronchiectasis patients and we were both in to see him within 24 hours of each other.  We had just experienced 2 weeks of straight rain.  Moved to the coast 8 years ago and you'd think my health would be great with all the salt air, but 2 years in, have had many health problems.  Strange isn't it?   We may find out some day what has caused this in all of us.  How old are you?  I am 60, was diagnosed at 52 when I had pneumonia that 3 different drugs would not work.
    • trix30458
      trix30458 debbie15945

      Posted

      I too live in Australia and like you was not diagnosed with

      brochiectasis until I has pseudomonas.  The first dose of cipro

      got rid of the cough for 4 months. Over a few years it stopped

      working after the 6th dose.  I was not given IV as I was told it would

      always come back since it is colonized.  Since I don't have a breathing

      problem the specialist  could do nothing else for me.

      I was told to clear out my lungs every day which I do with an Acapella.

      I also nebulise with himalayan salt once a day.  After doing this for 6 months there is definite improvement.

    • debbie15945
      debbie15945 Pamathatteras

      Posted

      Hi Pamathatteras

      I was 44 when diagnosed im 47 now

      When i was first diagnosed i had a ct scan also on my sinus as i had, had yrs of hayfever. My left side was completely compacted and i needed surgery i had amongst many things fungus in there.

      I live on a farm and our house has alot of mould around the ceilings. Which we have to constantly clean off.

      I asked my specialist about mould she didn't think it was linked

      I also have gord which is linked with bronchectisis it plays up terrible sometimes

      Gives me alot of discomfort.

    • debbie15945
      debbie15945 trix30458

      Posted

      Hi trix

      Its very frustrating isnt it

      My concern is if it is not treated what damage is it doing to our lungs.

      Creating scare tissue which will what cause cancer maybe? I dont know

      My specialist won't say long term what will happen as it effects eveyone differently.

      I havent heard of a acupella is it something you blow in to vibrate your chest? I was told to get a flutter which vibrates your chest

      And im going to try salt mix by nebulizer

      But havent started yet

    • Pamathatteras
      Pamathatteras debbie15945

      Posted

      Hi Debbie, thanks for getting back with me.  I don't think my doctor here thinks it is mold related either, but so many people here have lung problems from mold, so I believe it is somehow playing a part.  What did you mean by gord?   I seem very lucky compared to many.  The fatique gets me more than anything.  And I wonder....my pulmonary doc says there is no way I am tired because of my bronchiectasis, that my lung function tests are great.  So I wonder, is the pseudamonas causing the fatigue?  I have trouble finding out much about living with pseudamonas!
    • debbie15945
      debbie15945 Pamathatteras

      Posted

      Hi Pamathatteras

      Gord is gastro - oesophhagus reflux disease

      Its under control most of the time with medication but when it flares up its terrible

      Nausea ,indigestion reflux stuff like that.

      I have never had bronchitis or a bout of neumonia

      I had a bad cold which i had for about a month then i had a persistent cough that wouldn't go for a year thats when i was sent to a specialist and found i had pseudomonas infection. Not alot is said on the internet

    • Pamathatteras
      Pamathatteras debbie15945

      Posted

      Hi Debbi, ok, here in states we call it GERD.  I also have that too and now take OTC Nexium as needed.  My insurance won't pay for Nexium so now that it is available OTC in a lower dose I get it at the pharmacy.  I felt worse yesterday and called to see my doc, no appointments available, but now feel better again.  Wish me luck!  I have too much to do and no time to be sick. You said you had cut back hours at work.  What do you do?
    • debbie15945
      debbie15945 Pamathatteras

      Posted

      Hi Pamathatteras

      Hope your feeling better.

      I had just had a bout of the gasro flu

      Feeling much better now its going round apparently just something else to add to the list.

      I work at a pre school not the best profession working with children with my condition but i love it and dont want to give it away just yet so i cut my hrs back instead.

    • Pamathatteras
      Pamathatteras debbie15945

      Posted

      Debbie, I know the feeling!  I'm a nurse!  That's one thing my pulmonary doc was worried about....I work once a week in a free clinic.  He told me that if anyone came in really sick to wear a mask.  And now I'm thinking it's my house, brother.  I hope your stomach upset is doing much better.  I worked today but only 3 hours.  I work 3 part time jobs, one is volunteer.  Sometimes it's way too much.  I'm sure you do risk your health a lot being around kids.  I even think about it myself...I plan to visit my grandchildren during the holidays.  A lot of travel and a lot of family to visit....then I think, oh God, what if I catch something?  I keep feeling like I'm running a low grade temperature.
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