I have had difficulty deciding when I have started an exacerbation since I was recognised as "colonised" 3 years ago,sputum does not ever fully clear and only changes slightly in consistency and colour.
Right now my only means of defining the presence of an upcoming infection is not feeling well and coughing rather more often. Is that a common experience for those of us who are diagnosed as colonised?
In August I went for a full lung assessment that meant turning my lungs inside out over a period of 2 hours using various types of spirometers.Shortly thereafter I started an exacerbation has anyone else made that connection?
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locheil
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Hello locheil, yes, I would say that your estimation of an exacerbation starting up fits in very well with mine. I always produce a nice lot of the gunk and it is coloured ( I am colonised with pseudomonas since 1986). I can live and function with this though. When I begin to feel under the weather and the texture and amount changes I debate with myself on reaching for the cipro. Especially if my temperature has gone up from its usual. The prime time for this is after catching some sweet soul’s virus but it can also happen if I am stressed or have a shock.
I hate going for anything to the hospital and I particularly hate having breathing tests. I do not trust those machines. I have quizzed them about germs passing from one patient to another. Apparantly they are deep steralised every night, filters are changed and patients whom they suspect have infections like TB are tested last in the day. I’m afraid that still doesn’t put my mind at rest and after thirty years of doing the tests on all kinds of machines it does seem that I will usually get an exacerbation a few days after the tests. Hence I avoid like the plague and insist on an early morning appointment when it is inevitable.
The fact is that I find if I do respond to a perceived exacerbation with doxycyclin the effect of the antibiotic lasts for slightly longer than the prescription (14 days what appears to happen is the population of influenza bacteria is reduced for a while and after a few months builds back up to another exacerbation. To go into hospital for 2 weeks for intravenous antibiotics simply extends the period between exacerbations and by all accounts is unpleasant and extremely disruptive to one's family life,
I do agree with your efforts to get early outpatients appointments.I try and avoid winter appointments altogether.In November 2013 I attended the hospital at 11am and was finally seen at 1,15pm (this delay is standard and lengthening).There was snow on the ground and the atmosphere in OP3 (respitory outpatients) was wet and warm with about 100 patients and carers present.The airborne pathogens were so thick you could almost see them. I came away with 3 presents,Nora virus involving projectile vomiting,,a severe asthma attack that brought me to my knees followed by pleurisy I was fit for Christmas that year.My GP did say that hospitals are among the most dangerous places on the planet and who am I to argue.
I am assuming from what you say that you are colonised with haemophillus influenzae. I never had doxycyclin when I used to get this. My consultants didn’t like this antibiotic. I have had co-amoxyclav but since being colonised with pseudomonas the HI isn’t there. Maybe the pseudo frightened it off, lol. There are more antibiotics which tackle HI than there are for pseudomonas and maybe it is time that your docs tested to see which one may be effective for longer. I agree about the horrors of IV but sometimes a good clear out with that can then be followed up with permanent nebulised antibiotic to keep the HI down. When I had HI I used to nebulise amoxyll which kept it under control. I hope that gives you some ideas.
You are correct in naming the bacteria that I am colonised with.I can never remember how to spell it so I take the easy way out.I am very interested in your comments regarding alternative antibiotics. I am seeing my consultant on January 18th so I will raise it with him.There is something you might b able to clear up for me.I understand that my sputum sample is sent to the lab to be cultured the antibiotic that kills the bug in the laboratory is the one that my GP indicates I should use. Am I missing something as I have slavishly taken their advice?
Hi there Locheil yes I have exacerbations and it's awful isn't it. I have ended up in hospital several times because of it,fighting to breath with coughing and even though we are told how to breath, when you are scared, all common sense goes out of the window. goes clean out of the window .
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