Psuedomonas Colonization in lungs

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I have had asthma all my life, then diagnosed with COPD.  Over the past 5 years I have had a terrible cough.  My Pulmonologist blew it off until 2016 when I was diagnosed with Psuedomonas, but no bronchiectasis. At that time I was put on Tobi in a nebulizer twice a day and Cipro together for one month.  This did very litttle to decrease the cough, and cost me $500 for the Tobi because my insurance would not cover it.  A year later, I still have the cough and still have the psuedomonas, only it is now three times worse according to the lab.  My Pulomonolgist sent me to a infectious disease specialist, and both doctors agreed that there is nothing that can be done for me, no treatment at all!  This is unacceptable to me, so I have started researching where to go to get some type of treatment.  I have never been given that flutter thing that has been mentioned, or a vest, or any other treatment except those two antibiotics for a month last year.  Can anyone recommend a good place to go for evaluation and treatment?  I live in upstate NY, but I am willing to go anywhere in the U.S.that will take my health insurance to find some type of treatment! I would really appreciate any suggestions, thank you.

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  • Posted

    Hi Heather! My docs (first several in NE PA then Philadelphia) all specialists have said the same thing. Nothing much can be done. Really upsetting. I was sent home with the little flutter thing (handheld) but not really told what to do with it. Been on repeated rounds of levaquin over the last 3 yrs but felt pretty lousy and don't get much better even after 3 weeks on it. Told to avoid crowds and sick people. I cannot work any more and I'm only 50. I did also consult a specialist in the Brooklyn as well. Dr's don't know much about it-I think they all just guess. Have not been told much of anything to help. Pseudamonas is really not fun. I hope you find something great and share with us all. I hope that stem cell stuff or that one therapy mentioned on here where they filter antibodies from blood and replace them similar to a dialysis treatment (can't think of the name of it right now)become an answer for us all. It sounded super promising. I asked my specialist in Philly about the new treatment because I was so excited to hear about it but he was not encouraging about it at all! Best of luck!!😊

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    • Posted

      It was called plasma pheresis I believe-check it out. I believe that someone on this thread said it had been an article in bronchiectasis today magazine.
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    • Posted

      Debra,  I have Bronchiectasis, Tracheobronchomalacia, Pseudomonas colonisation and am VERY susceptible to H. Influenzae and Aspergillus. Rather than go through what my own treatment is I would signpost you to ;   [link removed] They have over four thousand members (including me,bubbly) with great experience in treatment, advice and which hospital and or consultant is your best bet, they are empathetic, sympathetic and have a vast collective knowledge, good luck !

      Emis Moderator comment: I have edited this post due to the swearing. These are open forums so as per the T&Cs please do not use offensive language in posts otherwise they may be deleted.

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    • Posted

      Hello Kelvin! Could you try to send that info again? Is it patients giving treatment advice or a health advocacy group? I think anything that costs the insurance company is not mentioned because drs may get rewarded for saving them money - not something I know but I suspect it. Thank you for any help😊

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    • Posted

      Debra aren't you in the States? I assume that because of the problems you've mentioned with insurance and high costs, etc. There is a place in Denver that specializes in bronchiectasis. Why don't you Google them & call them. If Denver is too far, perhaps they'll know of some place that's close to you.

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  • Posted

    Hi Heather

    I am so sorry about the pseudomonas. All I can do us tell you about the flutter devices and the vest.

    Both of these are tools to help clear secretions from the lungs. I don't know if you even need help with that. I have very thick and dry mucus due to complications called Sjogren's Syndrome & i need tons of help.

    One needs knowledgeable instruction with both to use them properly and to adjust settings to your situation. Just blowung into the flutter does nothing so a 5 minute training is needed, either by a pulmo/pulmo's nurse or a respiratory therapist familiar with your lungs.

    My vest was unbelievably expensive: 5 figures, US $, Medicare price, which means street price is at least 3 times higher. If I lived with someone who could pound my chest for 30 minutes twice daily, I wouldn't have the vest. If i hadn't been on ABs so many times in 6 months, no vest. But especially if I didn't produce tons and tons of very thick mucus, no vest. I had chronic bronchitis COPD for 20 years before this BX, which is why I have vast quantities of mucus.

    Talk to your pulmo/nurse to find out if you need any of these things, and please wear a mask in public, N95 or better, both to save you and to keep your germs from spreading to other BXers, esp. @ your doctors ' offices.

    You're in my prayers

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  • Posted

    Heather, there is certainly well proven treatments for pseudomonas. It itakes the form of a two week course of multi antibiotic IV's  allied with chest clearance medications, like  Salbutamol, Ipratropium,7% saline nebuliser and maybe IV amminophylline with postural drainage,physio, the vest, acapella etc.. What they are telling you, I think is that there is no treatment that they are prepared to pay for ! See this link for forums apertaining to bronchiectasisin particular where you can get very good advice about which hospital and consultant you need to see and very many varied treatments for bronch and pseudo. There are over four thousand members and their experiences are many.

    http://www.bronchiectasis.info/default.asp

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