Bronchiectasis, between exacerbations

[Ortho10]

Dear all

I would be interested to hear how "well" do fellow Bronch patients feel between exacerbations?

Do any of us get relief from the constant mucus clearance and fatigue.

Thanks' in advance!

[Hidden]

A very interesting question and I suspect that almost all answers will be different. I have been living with bronchiectasis all of my ‘conscious’ life. From three years old to 68. The daily routine of mucus emptying, whichever antiobiotic regime I am following - (nebbed antibiotics since the 1980s,) and keeping moving are just my life. Given that I have lived as much of a ‘normal’ life as my friends, worked, had children, travelled, gone back to uni in my forties and now work two shifts each week at a heritage attraction.

I was never allowed to consider myself an invalid, sick, or less than anyone else.

Exacerbations are a pain and my immune system and I always have an eye out for the bugs having a party, especially if some generous soul has donated me their virus.

Yes it can be exhausting, especially bringing up the children as my husband just didn’t recognise that I might struggle and my mother never helped because she believed in tough love and no molly coddling.

I am still battling on, shouting loudly and making myself a pain in a so far futile attempt to achieve better for myself and fellow bronchs from complacent governments and ignorant medics.

Perhaps it’s the fury that keeps me going!

[Ortho10 in reply to Hidden]

Thank you for your reply, so inspiring.

[Pentreath Volunteer]

Like littlepom says mucous clearance is part and parcel of daily life of anyone with bronchiectasis. I generally do this twice a day and fit it in with other daily events - e.g. cleaning teeth but do it more often during an exacerbation. It can take a long time to recover from an exacerbation and sometimes you wonder if any energy will return. I had a virus in May that wiped me out through all the lovely summer weather and only last month did I feel that I had enough energy to do what has to be done each day. At the moment I am feeling better than I have for a long time now and making the most of it - socialising more, catching up on household tasks that have been left for too long and enjoying life rather than plodding through it.

[GhostlyDinosaur]

I was diagnosed with bronchiectasis in August 2017 but had probably had it for years (decades?). Before diagnosis I had around 3 chest infections a year; since diagnosis I have had none. Mucus clearing, regular exercise and doing everything I can to strengthen my immune system, are making me fitter than I have ever been. I can now run uphill, for the first time in my life!

Thanks,

Rachel

PS About exhaustion: at the moment I need an hour's sleep in the afternoon in order to function for the rest of the day. This comes and goes, and in particular it was much better through the summer. Not sure what causes it (could be any of several possibilities), but this sort of tiredness is another thing I'd been living around and ignoring for years.

[Hidden in reply to GhostlyDinosaur]

That is really good to hear. Knowledge is power! I hope that you continue to stay well.

[GhostlyDinosaur in reply to Hidden]

Thanks littlepom

[Ortho10 in reply to GhostlyDinosaur]

I completely agree with you regarding having had this going on for years, but not having a diagnosis.

I can fall asleep at the drop of a hat (don't ever sit next to me on the bus).

My parents tell me I was in and out of Hospital as a baby with chest infections.

Luckily at 50 still mild, with my breathing tests still just in the normal range.

[inhaler1]

Do you take Azithromycin as a preventative in between exacaebations ?

Also have you tried a flutter device to help get mucus up

[GhostlyDinosaur in reply to inhaler1]

I love my flutter! I use it every morning: Active Cycle Breathing first, then the flutter, then do my peak flow (which gets another bit of mucus out too), and then take my inhaler (Seretide, for asthma not bronchiectasis). And more fluttering and/or A.C.Breathing during the day as required.

[Ortho10 in reply to inhaler1]

Gentamicin and acapella, working well for me, as well as the usual asthma stuff plus a bit of anti fungal.

[Lilyanne17 in reply to inhaler1]

I have been taking Azithromycin now for about 2 years, 3 tablets weekly and will have to continue for life. Since taking them I have had no exacerbations, prior to taking them four or five times a year!

[watergazer]

Hi mine is slight bronchiestasis and I only have to clear mucus when I’m ill however I am always tired by lunchtime. I try to improve my immune system, eat healthily and exercise.

[Maximonkey]

Hi Ortho, I am lucky to feel pretty good between infections. I seem more tired than I used to be but other than fatigue i feel good. I take Azith 3 times per week and take precautions when I can ho try to avoid infections. Take care Maximonkey

[Ortho10]

Love hearing some of the positivity, just what I needed to hear.

I hate waking up in the morning, and always my first thought is how is my chest today?

Treasure the days (and I still have plenty) when we have some zest for life!

[Normc]

Asthma all my life Bronch diagnosed 2014. Had a spiro test at my GPs in July & was told I was getting worse according to the readings. I said I felt ok but since Sept have had “off days” sometimes up to 5 days at once. You have all answered my question I kept meaning to post about fatigue as when I have a bad day fatigue lasts for 2 or 3 days. Clear my lungs twice a day without fail. I know this will make some of you envious but I cycled 50+ miles each Wednesday April to Oct this year & other shorter rides as well.

Excercise is the key for me. Not easy to keep it going & I do wonder if motivation will be a problem in later life. I am 73.

[Ortho10 in reply to Normc]

Cycling is a fantastic therapy, even the posture on the bike aids my breathing, and mucus clearance.

I cycle to and from work, 24 miles a day, couldn’t do it without my E bike!

[santisuk]

I've a relatively mild form of bronchX despite also having secondary immunodeficiency. I get 4 to 5 emerging infections a year where my sputum colours up slightly (usually a bit of streaky buff or light capuchino colour) and I get one or two typical but lighter weight exacerbation symptoms like cold sweats or a bit of tiredness.

About half of these are seen off by my immune system before I start feeling genuinely unwell. So, 2 to 3 genuine exacerbations a year (my immunologist counts it as 4 to 5, but I disagree and think the British Thoracic Society guidelines support that). I go to antibiotic mode when I get 3 or 4 flags of an exacerbation (or clearly purulent sputum or fevers).

I mostly react well to antibiotics so my exacerbations are typically a short-lived 1 to 2 week inconvenience, not the lingering misery that is oft described on HU.

In between exacerbations apart from the mild side issues of the next emerging infection I feel very well and thankful I am so far lucky to be in the mild category. My only drugs are prophylactic azithromicin and an acetylcisteine mucolytic, having cut out Symbicort inhaler and theophyline-type bronchodilator within the last 2 years.

Just thought I'd add a bit of balance for 'the other half' of the bronchX community!

[Fionafish]

Hi Ortho10, for me it is pretty relentless at times! However, carbocisteine really helps and apart from infections I generally feel happy and well. I do exercise as much as possible and spend the evening doing active breathing on and off (not very good at focusing full time on them). Most of the time it's fine but every so often I get frustrated. If the throat clearing gets really wearing I try and turn it around and think at least stuff is coming up (doesn't always work at night haha). Hope that helps and best of luck, Fiona

[Chloesue]

Hi yes I get about 8 or 9 months of relief from the thick mucas with carbosistein tablets 2 once a day in summer months.....but November it all start s up again so up tablets to 2 three times a day....not to bad at the moment....