Severe bronchiectasis??

[carolg1]

Can anyone who has severe bronchiectasis tell me briefly if you are having a bad day with ejecting mucus but you haven’t got an infection how long approximately are you bringing up the mucus ?? Just need some general info before I see my consultant, I appreciate we are all different but just need some idea as I think mine has progressed a lot... but I also have reflux issue so I am so confused.... thanks x

[Fionafish]

Hi carolg1, mine seems to be really bad at the moment and a doctor (not the consultant) recently said this might be my life now which was a bit scary. I have had two colds this year that took an age to get over and now on long term antibiotics. The throat clearing and coughing are constant but three sputum samples have revealed no infection. I was exercising a lot up until January and that helped clear the sputum (along with active breathing) but was told to take things very easy when ill so only exercise intermittently now which is a bit worrying as sure it helps. Have also got mild/moderate emphysema too. I am on sick leave at the moment and seriously considering extending it long-term. Hope you get yours sorted, best wishes x

[carolg1 in reply to Fionafish]

Hi Fiona you sound as though you are going through the exact same phase as me, but this winter has been the worst ever so whether it is a particular viral strain that is really nasty I’m not sure... but the amount of mucus is taking up all my day oh the joys thanks for reply keep well n warm xx

[Fionafish in reply to carolg1]

Poor you, I can sympathise, and agree that this is the worst year ever. Have got steroids now from the doctors (40 mg for three days). Took first lot this morning and already got a better appetite and think I am coughing less - happy days! Take care x

[chubby2x22]

Morning carol. My bronchiectasis was severe for several months I was exhausted with the cough and sleeplessness. When my consultant appt came thro he was brilliant and put me on azithromycin 3 times a week long term and spiolto respimat inhaler. I've had no infections or hacking cough since (6 months). Take it easy hope this helps. Jane

[helenlw7 in reply to chubby2x22]

I was exactly the same. Coughing for four years, brought up mucus every time I coughed, my sleep was affected. I was on doxycycline and three inhalers but I was still getting infections.

I saw my consultant last August and he said that was it really, I’d tried everything. I got a bit emotional then (not to the point of actually crying though) which he couldn’t really cope with (he’s and army colonel and isn’t really touchy feely). Anyway he changed my antibiotic to Azithromycin and my life has changed. I’ve stopped coughing and have only had one chest infection since then.

[carolg1 in reply to helenlw7]

Hi Helen what dosage of azithramycin are you on please ? Thanks for replying xx

[helenlw7 in reply to carolg1]

I take 3 250mg tablets a week. Are yours the same strength?

[carolg1 in reply to helenlw7]

Yes Helen they are in the beginning they helped but I think I’ve had a couple of nasty viral infections this winter they have knocked me for six... xx

[carolg1 in reply to chubby2x22]

Thank you Jane happy you are sorted too xx

[carolg1 in reply to chubby2x22]

Happy your sorted Jane thank you xx

[chip1]

hello caroig1

yes i have days when i produce a lot of mucus without an infection being involved i start my day with a cup of hot water slice of lemon and fresh ginger on bad days it can take me hour to clear as much as i can .I use an Acapella that loosens the stubborn mucus it works for me viva la difference it what makes the world go round hope you have a good consultant

[carolg1 in reply to chip1]

Hi I think that’s probably half my problem I baffle the consultant to be fair which isn’t good is it, thanks xx

[Lynzilou in reply to chip1]

Hi Chip

I have pulmonary fibrosis - what are you suffering from. I have continuous mucus which I find really difficult to shift. I have recently been told about lemon and ginger and started yesterday with both - do you think it helps to clear the mucus?

I have the Flutter device, which I understand does the same sort of job as the Acapella - but sometimes it works better than others - you seem to be pleased with the Acapella - can you tell me anything more about it?

Regards

Lynne

[chip1 in reply to Lynzilou]

Hello Lynne

yes i find the hot water and lemon and ginger help me clear the mucus i have Bronciectasis i was being treated for asthma for 15 years before i bit the bullet and paid to see someone was finally diagnosed the treat i needed was different to what i had been taking. I,m lucky to have a good consultant who listens to me few and far between these days. I dont always need to use the acapella but its a good tool to have on hand as i dont tolerate medication very well. I have just come off azithromycin because i started to get some side affects but they have got me through the winter without a chest infection.so i will try them again next winter. I think you have to own your illness and not let it own you that way you can decide what works for you hope that's been help for you Lynne and not to boring. I live in Manchester so some morning i'm competing with the sparrows as to who can cough the loudest Ha Ha

regards May

[Lynzilou in reply to chip1]

Thank you May - no not boring at all! very interesting and informative. Did you see a consultant privately? I am considering doing that, as I my appointment with the chest consultant was cancelled and I have had no advice or help with the breathing/mucus issue for six weeks. Do you do ginger and lemon separately during the day? And do you just make a "tea" with them and add honey? I read about sucking lemon slices sprinkled with salt and black pepper and I'm doing it - but oh!!!

Regards

Lynne

[chip1 in reply to Lynzilou]

oh your braver than me .i just make a tea with honey .do some research on the net and find out who is the best chest specialist is in your area it will tell you how long they have been qualified and what hospital they work at and make a private appointment if you have a good relationship with your doctor he might be able to recommend one but otherwise do your research and make your own appointment price is around £200 -£250 make them aware if you don't have private insurance. you need some advice on dealing with your problem .there is a lot of help if you know were to go. Don't worry about the money there's no pockets in shrouds and it the quality of life you want now not the quantity . good luck

Regards May

[Lynzilou in reply to chip1]

Thanks May. I'll see what I can find out.

Actually, ginger and lemon and honey isn't that bad!! minus the salt and pepper!!

Regards

Lynne

[Penkman]

Hi Carol,

Like you, I am going through the mill at the moment following a cold about a month ago.

I am coughing up copious amounts of mucus continuously from about 45 mins after getting up up to around 5-6 hours later.

This replicates the symptoms I experienced when I first had bronchiectasis about 18 months ago.

I have found that cycling really improved the condition whereby I was only coughing very briefly first thing in the morning and feelings of fatigue all but disappeared.

Since the New Year, a combination of bad weather and catching man flu have meant I have not been out on my bike and I now feel too fatigued to even contemplate it.

I know I need to force myself into cycling again and hope to do so now that the weather is improving in the hope that it will improve my condition and help return to a more normal life.

Hope you improve soon.

[carolg1 in reply to Penkman]

Yes I have been very immobile with being in hospital and 3 months worth of infections and it has totally de conditioned me so need to build myself up, also I rarely cough unless I force myself or if I’ve got a chest infection.... thank you xx

[Caspiana]

Hello carolg1 .

I don't have the same condition but just wanted to say I'm sorry you're going through a rough patch. I hope you can get some relief soon.

Sending love.

Cas xx 🍀

[Claudine]

I'm assuming you are taking Mucodyne to thin the mucus and make it easier to cough up? If you're not bringing up the gunk it will get infected. If you now have 3x a week antibiotics that indicates you have pseudomonas as well? Is that right?

Exercise will loosen it too of course but the Mucodyne will help you to cough up in one go, thereby avoiding the constant coughing throughout the day. I find that I need a clear-out first thing in the morning, then again before lunch as morning is my most active time of the day, then often before bed too. Lying on my back makes it easier to cough up too. As you say, everyone is different and it's a matter of trial and error really. Good luck.

[carolg1 in reply to Claudine]

Yes you are very similar to me in how your day goes , thanks Claudine keep well x

[Foxy79]

Hello carol

I'm foxy79 we spoke before how are you and did you achieve what you were looking for? Myself I have very bad meant serve copd broncechtisis emphysema and respiratory type 2 asthma I'm on oxygen nebulizer and bipeb machine with 6 tablets and steroids and last week of was given colomicine which is very strong antibiotics and I take it via nublizer I'm feeling great it does help I'm feeling it sorry I didn't mean to make you feel bad just trying to say your health has medication just need to know what and how much dose perdiesoline I take 30mg can you half of my day goes just on meds but atleast I can move about I'm 37 see your GP or consultant arrange sputum sample review your medicine surly something is wrong that's why your feeling Ill review your steps you will find a quire and your answer take care 🙏

[carolg1 in reply to Foxy79]

Hi foxy, gosh your young to be so bad with this awful disease bless u , hope you have lots of support x

[Foxy79 in reply to carolg1]

Hi carolg

No not really I get that much support or help I have been maintaing myself but before I didn't know and as I was having chest infection on regular basis but know I'm OK and out of hospital but lots of medication and juggling with stireods and as life line getting shorter it's hard though take care hope things get better for you 👍

[normannippy]

Hi! In reply to your question, I cough at frequent intervals throughout the day. I haven’t tried mucodyne because I am afraid of side-effects but I shall if I get worse. If I get a chest infection I take my rescue pack of Amoxicillin and after that my lungs are clear for about a month and then the mucus returns. One good way of clearing my chest is something I discovered by accident. I had to have a Cat scan on my chest and after following all the instructions whilst in the machine to enable them to take pictures of my lungs I sat up and lots of phlegm was loose. The instructions were: Breathe in deeply and hold your breath (approx 12 seconds) and breathe out. Breathe normally (about 1 minute). This was requested 6 Times. Then breathe normally for a minute, stop breathing for ten seconds and resume. This was requested 3 times. I now do this once a day and it helps.

I have tried Azythromycin 3 times a week. It didn’t help me but it certainly helps some people.

I don’t have a reflux issue but I understand that it can be the cause of Bronchiectasis. Are you taking a drug like Omeprazole for that or an antacid like Gaviscon?

I hope things improve for you.

[carolg1 in reply to normannippy]

Hi yes taken lots of different reflux meds but none seem to help the carbocystien is really good for loosening the Horus stuff though, thanks x