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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  • Posted

    Hi, I have same problem but a lot better after 3 years of misery, contact me at-if you like. Allan

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    • Posted

      Hello Allan, I am a 21 year old female with sever bronchiectasis, i cough tons of phlegm up a day and also have pseudo. Please please enlighten me as to how i can curb it or at least make the phlegm production less. 

      desperate and depressed

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    • Posted

      Hi Madeline, I read your message and just want to tell you that probably you cough lots of phlegm up every day because of the pseudomonas. This is at least what happened to me. Before having pseudo I never had so much phlem..  I'm inhaling 2/day colistinato which is an antibiotic and the specialist wants me to take azitromicina. These 2 antibiotics for the rest of my life. I decided not to take azitromicina. All that antibiotics makes the pseudo more resistent! I do 2/day inalations with combiprasal in a nebuliser and I have 2

      inhalers. I don't feel better with all these things...exercise is very important and healthy food as well. I feel very sorry for you to have this being so very young! I got it at the age of 38 and I'm now 66...I do lots of research and I tried many treatments and therapies without succes but now it seems that I am on a good track! I will let you all know if this is going to be our salvation but it will take some months as I have to try it and see if it works... I wish you all the best and please be positive and try not to worry. That makes it worse....

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    • Posted

      Hello!  I was diagnosed with PA and bronchiectasis about 1 year ago.  I also have asthma.  This has been a nightmare.  I do not know where I acquired this.  I am terrified of smothering.  Coughing up a big glob of blood was extremely terrifying too.  Last winter i thought I would surely die from this problem.  I am glad to know people do live with this situation.  I do not know how many doctors to keep going to with hopes of eradicating this nasty thing.  Laying down to sleep and then the coughing begins.  Also I get feeling feverish (though it says no fever on thermometer) and my chest feels heavy and just general unwell feeling comes upon me randomly.  I feel bad for the young girl with this awful thing.  Thank you for hope of surviving for some time to come.
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    • Posted

      Take tobramycin inhalation 28 days then 28 days off then 28 days. i am having BE from my childhood. tobramycin destroy the PA. and take immunity boost tablet like immunace forte to prevent PA. but my long damage is progress can't stop if any one know good treatment please share it here
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    • Posted

      Hi Christina, i am curious to know how the treatment is working out for you.  About 5 months ago you mentioned in a thread that you are back on track and would need a few months to see how it goes.  Just wondered what treatment you are on? My mother is really struggling with her bronchiectasis we are trying salt air at the moment but I am really worried about her, I am also looking at lots of research but I think it's better to ask those that have been affected by the condition and to see what works for them,  Look forward to your reply, kind regards Sandra
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    • Posted

      Sandra, Here is what I do.  Also, Tussionex cough syrup will calm the cough a lot. Its potent and controlled by our DEA here in the US. They have added a new neb med along with everything else two hours after my first neb I do the new one which is a saline solution 7%.  

      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. After each neb treatment.

      The Vest 2 times per day (which is used along with the nebulizer)

      BiPAP machine - at night, which I cannot stand to use. As you know we sleep little as it is.

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    • Posted

      Hi gianet,

      I have been refused funding for tobramycin by my CCG and am appealing - can you let me know which hospital you are under?

      Had bronch since childhood too, and got PA 11 years ago.  Colymicin is good but consultant wants me on tobramycin as physio etc is now 5 hours a day!

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    • Posted

      Hi Madeline. I notice your post is a year old and dont know if your picking up this thread still. I have Bronchiectasis as a result of Aspergillus infection (ABPA). I have constant problems with Pseudamonus infection and I was producing lots of phlegm at one point but this has all stopped. I am not sure exactly what helped as I have had so many antibiotics etc but a 3 month course of nebulised Colomycin was most beneficial. In the last month I have have a 2 week course of IV Tazocin which has also helped immensely. All of my treatment is overseen by a brilliant Respiratory Consultant. You wont get very far with your GP as they simply dont have the experience and they are unlikely to prescribe Colomycin because of the cost. You also need a special nebuliser for it. So my advice is to try and get access to these more vigerous if not costly treatments. Make sure you are under the care of a Respiratory Consultant if you are not already.
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    • Posted

      Debra, Russ here. Im wondering how you clear yourself each day of the mucous. You didint mention it, though maybe above. You mentioned that you begin to cough when you lay down. Fir me that means I need to clear the mucous in my lungs. I do it by putting knees and hands on the flore and coughing what will come up easily and then using hand percussion on my chest along with huffing to get the remainder out. Once in awhile I will have a little more to cough up when I go to bed. 

      Someone said in one of our discussions that their doctor told them that to let nature take its course. I find that to be true. When I have mucous ready to come up I start cough naturally. I try to force mucous production with salins but have not had any luck so far.

      Best

      Russ

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    • Posted

      I had bronchitis and pneumonia for a year and suffer bad I finally got a Dr who got my diagnosis of bronchiectasis . I'm currently in a severe flair up, I also feel feverish but I'm not running one it's actuallymlow. I can't breathe a deep vreath, my chest feels like a elephant is sitting on it. I also now have pleurisy . I did ten day steriods and now three different antibiotics m for ten day for the months. It's horrible dealing with this I feel like life has stopped. Anything worked for you?

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    • Posted

      hi Russ, i wonder if you have not been seen by the Respiratory Consultant,I was given an acapela devise to help get the mucus up , I have also got myself a Flutter device, I find the flutter very very good. 

            Pam.

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    • Posted

      Hi Sandra. Just seen your blog on PA. I've just been told I have Bronchiectasis & PA. I was given 2 wk course of antibiotics which has not got rid of it. I use a nebuliser to help me breathe & hopefully cough up phlegm. I also feel like an elephant is sitting on me. Can't sleep. Always feel dehydrated, it's awful. They have found PA in my water supply.

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