final results on my culture showed

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scedosporium/ pseudallescheria isolated gram positive rods.  They sent me to an infectious disease doctor and she said these had colonized in my lung, but was not a problem unless my immune system became compromised.  Has anyone heard of or had this type?  I also got a flutter valve which I have been using everyday with good results.  How do people hande this when traveling or staying with someone?  I was at my brothers house and I waited until everyone was asleep and then tried to hack it up quietly.

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  • Posted

    Hi Karyn, have heard of this bacteria but not too familiar with it. My husband contracted pseudomonas bacteria and it made him very ill. On top of everything else he could do without it. He is being treated with very strong antibiotics. His too is colonised in his lungs. I bought a flutter valve for him but as yet not used it mainly because we are worried about using it. He has real problems some days bringing his mucus up. I gather your infection was picked up by sputum tests. Wondering what ab you have been prescribed, was difficult for us as he was immune to so many. I wish you well. Xx
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    • Posted

      Susan, why is he worried to use the flutter? I am finding it helpful and feel that my lungs are much clearer since using it everyday. I had a broncoscopy and they cultured out those two bugs I mentioned. She (doctor) said I do not need treatment right now, they can just stay in the colony in my lungs...... a little

      town....ha, ha. But now I am not sure, will do more research on it.

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    • Posted

      Karyn, I think it's because when he is "well" he dosent want to try anything that may rock the boat, and when he's not well is the wrong time to try new things. Having said that today is a very bad day and all my fears are surfacing again. I'm so pleased it's working for you, have read and heard about it and seems to work for some and not so for others, which is pretty much how everything seems to be. Hope you stay well and maybe I will try and talk to him about tring it, thanks so much. Xxxx
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    • Posted

      Susan, sorry your husband is having a bad day, I can understand how it is scary to try new things, especially when he has probably tried many different treatments. There is something out there that can help. Getting the mucus up makes all the difference.
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    • Posted

      Hi Karyn, can you tell me is it difficult to use, will he gag etc on using it. The one I bought was from Amazon, not expensive. Just reading how it's helped you makes me think he should try it. How many times a day do you have to use it and is it difficult to use, sorry for all the questions but I'm constantly trying to solve the problem for him, thanks in advance xxx
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    • Posted

      Mine is green and about the size of a baby bottle. She told me to do it twice a day, but I have been doing only once. I lay on the couch with a pillow under my hips and my head just a little bit elevated. Then I blow slowly, but fairly forcefully into it and breathe back in slowly. You will feel gurgleing, crackling after awhile. Try to keep blowing as long as you can until you feel there is something to cough up. I have a small bowl next to me, and then I sit up and cough it up, I have never gaged. I follow this with some slow breathing laying across a chair and get more up, but that just seems to work for me. Hope this is helpful.
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    • Posted

      Thanks Karyn, you have been a great help with your explanation, and I'm pleased its working for you. Xxxx
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  • Posted

    I know what you mean about waiting until everyone is asleep.  I have.nt stayed  anywhere else.  but I have had people staying in my house,   I wait until the house is empty and also when everyone else is asleep.  not easy
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  • Posted

    i have not heard of this before so can not help, i am on long term AB and i could do with something like a miracle to get rid of the muck in my lungs, have not tried the flutter yet as like you i would feel like everyone was  looking at me,  I even disappear when i have to use my inhaler. silly really i know,  we should not worry what people think and say.

     

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  • Posted

    Hi Karen yours sounds very complicated, saying that i suppose everyone is to there own specific case, but do hope you are o.k.  My husband has a flutter took some doing getting him to use it he does now, but i have to remind him all the time. At the moment he has psudamona, and we have had a few problems with the Cipro but seems to have settled down a bit now, i dont know if it is just my imagination but there seems to be alot more mucus with psudamona then other infections or do i just think there is
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    • Posted

      I tend to agree with you Jeannie concerning the mucus. My husband also has pseudomonas bacteria and his mucus is also very thick, which gives him lots of problems in bringing it up. It's such a nasty bacteria and we were told no ab can kill the bacteria only dampen it down if lucky. I hope your husband is well at the moment, it's all a rollercoaster for us. Xxx
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    • Posted

      Yes Susan you are so right it is just a roller coster he has clarithomycen  twice a day to keep it dampened downand this started Monday 13 july the first time since April so i suppose not to bad. i hope your husband is alright Susan and you are alright, as i know it takes a lot out of us not so much the looking after its the emotional ups and downs, and not knowing what it is going to be next, i find it a bit scarey at times when Joe is ill, take care and God bless

       

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    • Posted

      Jeannie just a month ago I had a meeting with hubby's consultant, told no more treatment and pallative care put into place, you can imagine the devastation for us. One week later I had to call paramedics as I thought he was having a heart attack, rushed into hospital again, 6th time this year. A different consultant saw him when he was on the ward and gave 2 units of blood as he was anaemic, also his pottasium levels were low. He was put on  Tobramycin IV and Levofloxacin IV. He responded well and came home with Levofloxacin tablet form, still taking it now. Also introduced Aziithromycin every other day. There was a huge difference in him for sure, having said that today has not been a good day, hoping it's a one off. We have changed consultants to the one that treated him in hospital.  It's so up and down all the time don't you think.  How long has your husband had the pseudomonas bacteria, how did it present its self and does he stay well. Clarithomycin we have also used. Xxxx
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