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Hi I’ve recently been diagnosed with Bronchiectasis after a bout of pneumonia in September. 

I have been given no proper information on the management of this condition eg the dos and do nots. I am quite breathless most of the time but apparently do not have a chest infection at the moment. The only thing I use is a ventolin inhaler which helps temporarily. I am waiting to see a lung consultant next month but am also just about to start radiotherapy so am bit worried about my energy levels throughout with travelling etc

Any information/ tips would be greatly received 

Thanks

Nicky 

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  • Posted

    Hi Nick, sorry to hear you have joined the bronchiectasis club.

    Your consultant will give you some ideas on how to control it: breathing exercises etc 

    i tend to stay away from dairy products, they don't help.

    walking and swimming are the best to make you feel good and keep the cough 

    under control. 

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  • Posted

    There are breathing exercises online. You can look them up and start now.

    Stay away from sick people & where they congregate and especially stay away from children now if you're in the northern hemisphere. Wash or sanitize your hands after all contact because: part of your lungs no longer functions as it should in terms of moving stuff up and out. "Stuff" here means phlegm you produce and also things you inhale, pollutants/germs /pollen, etc. In that area is the perfect breeding ground trifecta, moist, dark and warm.

    Be careful about exercise until you know more. Or, go for a 1-2 mile walk and end up 2 hours later in the ER, not once, not twice but 3 times. One time I got admitted for 4 days. Like you, I started with pneumonia and things went on from there. When I finally saw my pulmonologist, he banned me from walking more than around the house in normal living -- not kidding -- until i got better. I was sick from July '16 -May '17 because i just would not listen. I now spend an hour in a therapy pool, working out gently. Not allowed to go faster than 2mph on water treadmill nor longer than 10-15 minutes at a time.

    You have stayed infection free so you're better off than I was. Drink tons of water but small amounts at a time -- your lungs need it.

    Good luck

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    • Posted

      Thanks so much for your advice - very useful if a little depressing- coming to terms with it all at the moment. Used to swim half mile 3 x a week and now I can just manage a half hour dog walk! 
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    • Posted

      It may get better. If you're in the UK, Canada, northern US, it's winter. You may feel so much better as it warms up. Plus the doc may give you other meds in addition to or in place of that Ventolin, which is only a rescue drug. It will depend on what kind of BX you have and the particular doc.

      Is radiotherapy what we Americans call radiation, as in cancer treatment? If so, I take it that the cancer isn't in your lungs?

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    • Posted

      Hi there thanks for your reply and information. Yes the treatment is for a recent breast cancer diagnosis which has taken a back seat to this. My frustration is just waiting to see a specialist to discuss!
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    • Posted

      That would be very frustrating for me. I hope you can get started soon and that treatments are a success, for both BX and the breast cancer.
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  • Posted

    I had Pneumonia last April and was diagnosed with bronchiectasis around summer time. 

    I think exorcise wise it might vary from person to person. I was told to do as little as possible activity wise and I was admitted for a week in November because like the poster above I didn’t listen and carried on walking the dog, daily trips to shops. I feel s**t when husband has to come in from work and do this stuff so was pushing myself as I felt like a burden.  

     I’m still struggling with coming to terms with Fatigue and lung pain, the other stuff I can handle but those are what makes it hard for me to manage day to day. I can’t sleep due to pain. (Hence me posting at 2am) The wheezing and bringing up the gunk is unpleasant but constant pain and fatigue is what does my head in.  

    My consultant is  amazing though and gave me leaflets and websites and doesn’t dance about the bush. I appreciate being told how it is and it’s knowing that this won’t go away that I struggle with, that I’ll always have pain and fatigue.  She said I’ve had this way before my pneumonia and knowing weight loss and fatigue can be a symptom I think it’s been six years. People thought I had an eating disorder when I went to gp about that, gained all my weight back now smile 

    Avoiding sick people is good advice. I’ve come down with some nasty bug this week despite staying at home almost all the bloody time and have been in bed most of the last three days feeling worse than I did when I had pneumonia so I’m proper sorry for myself  this week smile 

    Sorry to whinge on your thread, feeling low at the moment and wimped out of starting a thread for myself.  Hope your bronchiectasis doesn’t make your radiotherapy harder than it normally would be too. 

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  • Posted

    Hi Nicky

    I was diagnosed with a lung lymphoma 4 years ago and received a course (about 8 sessions I think) of radiotherapy. It was relatively lightweight and I can't recall it taking anything out of me - ie no exhaustion, sickness etc. The radiotherapy was a success but I was still producing lots of mucus and a bit of coughing which is when my consultants (had consultants from various disciplines as part of Papworth Hospital's lung defence team approach to non-obvious cases) decided I has bronchectasis. So I was in fact a bronchX sufferer when I had the radiotherapy.

    Your radiotherapy may be stronger or your reaction may be more pronounced but I would not start form an assumption that it's going to be horrible. I recall the various guidance I read at the time saying that tiredness can be an issue but that seemed to be mostly related to the tiredness of travelling. I was lucky that my treatment was at a hospital only 30 minutes drive away and I felt no issues that would have impacted my driving. Seems like if you have long travel then consider taking steps to reduce its impact if you have the financial resources to use taxis/hotels etc.

    As a more general point don't let the postings on health web sites like this wind you up. In my experience posters who come on are very often the ones who have symptoms that are on the more severe side. There is of course good reason why that would be so and I certainly do not object to seeing their experiences as they are nearly always very helpful, but I do have a concern that newbies might get an overly pessimistic outlook for development of their disease. There are many of us bronchX sufferers who do not relate to the degree of suffering and life-deflection portrayed. I have every sympathy with them; if for mo other reason that who knows what the future brings for any chronic disease sufferer?!

    PS - maybe talk to a general medic or pharmacist sooner rather than later about taking a mucolytic. For most people, including us 'mild-ies' they are helpful in thinning and shifting gunk and for most people they seem to be very low impact drugs. The two generic mucolytics used most are carbocysteine (UK and some parts of europe) or acetylcysteine (US/Germany) - locational indicators are just generic indicators of geographical diversity; many countries have both available

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    • Posted

      NAC, N acetylcisteine, is rarely used in the US and hard to find. Tablet guafenisin is everywhere but only dirt cheap at Costco; extremely expensive when bought anywhere as mucinex..

      NAC is now known to have some psych-active components and can cause big anger issues in some folks.

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    • Posted

      Interesting. I thought I was just getting old and crusty - maybe it's the NAC Long* A German manufactured acetylcysteine HaHA.

      Actually I'm trying out carbocysteine (brand name Flemex) to see if there is any discernible difference. At pharmacies here in Thailand you can get most things over the counter plus often a cheap Thai copy (some good/some useless IME). Last time I went to my Thai pulmonologist he muttered something about carbocysteine having been determined in some research study as more effective than acetylcysteine, but I can't find any such study on the internet. I'll ask him again when I next see him (or my UK team when I go back there for my next check-up). So far I don't detect any real difference. Maybe I'll try guafenisin as well when I've finished personal trial #1 

      *A German manufactured acetylcysteine. 

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    • Posted

      Lol, a little old & crusty here, too. I am ultra-sensitive to meds & had a terrible affect from NAC. Went online & found chatter about off-label use for folks with diagnosed psych issues. For me that means I've got to step away, those drugs always end badly with me even tho we've only ever used them for off-label ends (topamax for migraines, wellbutrin for smoking). I don't know if guafenisin is more effective, just much more common around here. I take 1200 mg x 2/daily per my pulmo. But i came to BX after 30+ years of chronic bronchitis.

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