To Tom1

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Yes this is an unsociable disease. I think we live one life that others see and one for us alone. The disease is embarrassing and life curtailing. The office is not the only place where you dread to have an episode of coughing and trying to hide the stuff you bring up. There is the shopping, the cinema, the library and certainly no chance of a theatre trip as I have found to my cost. There is not much point trying to explain to anyone else as they think it is something you should be able to control, so I no longer bother. I feel for you Tom1 but as I have no solution for myself just thought you may appreciate a few words from someone who knows.

greenlane (how are you now Tessa - a fellow sufferer)

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  • Posted

    The horrible stuff we cough up is a total pain. And worse when you are young because you are so self-conscious. I always used to worry that when I kissed somebody I would get a mouthful of phlegm.

    However, a positive attitude does help. I do my physio every day - well most days! And I married a lovely man who understands (we have been married for 34 years). I try never to let it stop me from doing what I want in life. I cough in the office and people look? Let them look. I go to the loo and clear my chest and carry on. I have been to America, had long holidays in France, I have worked since 1964 and look after my own house and garden. I know I am lucky to be able to do these things but sometimes, believe me, I feel like staying in bed. I hope you start to feel more positive soon.

    Best wishes

    Lyn

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  • Posted

    Hi Greenlane,

    I have managed to go out for lunch with my Husband a couple of times this month. Which is a first for three years.

    Lyn,

    What a lovely positive post. How inspiring. If only I could adopt that attitude, I would definitely have a better quality of life

    I am trying to care less about what people may think, but going anywhere for me isn't just a case of the coughing or bleeding, it is also smells. These days, just about anything can tighten my chest and set the cough off. Air fresheners, cleaning products, toiletries, you name it. That is a big problem on it's own. But yes, keeping positive is essential.

    Tessa

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  • Posted

    I realise how lucky I am Tessa. I know I don't have it as bad as many people. And I know about the smell, too. I asked my husband to be totally honest with me about this one and he promised he would. So far I have discovered that even when the sputum is really disgusting to taste it often doesn't smell as bad as we think. The answer for me is always clearing my chest. I don't do percussing (hurts too much) but I was taught breathing exercises and \"huffing\" to get rid of the muck. It takes a long time. I get very bored with it, but we have a TV in the bedroom and I watch that. They are threatening me with nebulized antibiotics next but I hope to keep that at bay for a while.
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  • Posted

    Lyn.

    You are doing so well, but a positive attitude really helps.

    I posted about that to you on the other thread. I cannot do postural drainage, so I think as soon as I'm off the antibiotics the stuff starts to build and build and then I'm down again in two weeks with another infection.

    I don't know how good mucolytics are, but am going to ask my consultant for it in the hope that it will shift the gunk for me and I can go longer between infections.

    Was getting used to going out again but now this cold weather has put a bit of a stop to it. I find that whan I breathe the cold air in it tightens my chest and sets me off coughing. I wear a scarf around my mouth and nose but , although it warms the air, it also restricts the amount of air I get.

    Anyone else have a problem with the cold air?

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  • Posted

    Hi Tessa

    I am so sorry you are not able to do postural drainage because it is definitely the key to clearing the chest. I don't percuss, you know, I was taught breathing exercises to help clear the chest. But if that is not possible (and it does take ages) then maybe try the drug. I don't have that one, just azithromycin and seretide.

    I do find the cold weather constricts my chest a lot. I take my ventolin inhaler with me when I am out in the cold weather and I find that helps. Fresh air is important though, I think, and if I don't get outside for a while the stale air indoors does me no good at all.

    Best wishes

    Lyn

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  • Posted

    Thank you Lyn. I find that staying in and breathing the stale air is not good either. I do open all the windows and the back door a couple of times a day to freshen the house up.

    I really feel that I need to find some gentle way of clearing the muck daily and if I can do that, I may be able to go longer without infections;.

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  • Posted

    [color=darkred:93b77562ba][/color:93b77562ba]

    I just discovered this Bronchiectasis forum, and until now I was the only person I knew who has or has had Bronchiectasis! Like an exclusive party to which I've been invited, I feel nevertheless nervous about entering in, yet thrilled to find other people with whom I may be able to connect with on the issue of Bron.

    My bronc. came as a result of a couple of things, I believe: chemotherapy and radiation to eliminate a non-hodgkins lymphoma back in 1993, when I was 20,

    Acute Guillan Barre syndrome, contracted a month after my final treatment for the lymphoma.

    I guess the Bronc. didn't rear its ugly head until the summer of 2000. My first sputum, I remember it well....(I was playing basketball in my parents' driveway).

    I believe my bronc. can be categorized as severe. I need IV antibiotics around 3 times a years, and I am at the moment slowly recovering from a double whammy of pneumonia and septicaemia. I'm also disasterously underweight, so I at least I don't to eat sensibly - I need to eat like Mad!

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  • Posted

    Hi, welcome to the Bronch thread. I'm sorry you now have this problem to add to your others. Hopefully, on this thread we can post our experiences and maybe learn from each other and know we are not alone with this condition.

    What is your treatment regime at the moment? and what meds are you on?

    Warmest regards

    Tessa

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