Hi all, new person here! Looking for some advice/reassurance form those of you who’ve had Bronchiectasis for some time...
I’m 27 years old and was diagnosed last April after being misdiagnosed with Asthma for 5 years previously. A bit unknown at the moment as to why I have Bronchiectasis as I’ve never suffered from any lung complaints in the past.
My reason for writing on here is that I’m struggling at the moment with managing my symptoms. My biggest problem is coughing and thick phlegm - which is happening pretty much constantly every day. It’s starting to affect my day-to-day life and of course the fatigue which comes because of this.
I currently nebulise saline twice a day as well as physiotherapy 1/2 time’s a day. I’ve had antibiotics in the past but am currently infection free according to my last test. (I’ve also trialed carbocisteine but suffered bad digestive side effects and no real positives.)
I feel the saline has helped but not feeling much benefit from the physiotherapy - does anyone else struggle with this?
Thanks in advance!
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redonyou
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Welcome to the site. I have bronchiectasis, and bronchiolitis obliterans.
The coughing is exhausting isn't it? You are already doing the right thing with physio and your nebuliser, however if you are not feeling any better please go back to your doctor.
Have you got the NLF booklet about bronchiectasis? If not do get one it's very informative.
As for constant coughing, it helps to suck throat sweets or sip lemon and honey, not all the time but to give yourself a break.
Have you been to pulmonary rehab and been taught the huff, puff, double breathing that helps shift the mucus? If not ask to be referred by your doctor.
Treatment for each patient is slightly different but once yours is sorted life does improve again.
If you are really worried and not getting help from your gp call NLF they are brilliant.
My consultant has left the hospital that I’m at so am now on a long wait list for my next appointment so led me to look for answers elsewhere which led me to here.
Yes I was giving that booklet when diagnosed, did help a lot!
Hi i have only just been diagnosed with bronchiectasis after having ct scan done but been told probably had it since a child, i also have a cough and bring up not very nice thick phlegm,they have put me on carbocisetine capsuals 6 a day and they seem to be helping loosen the Phlegm also was told to drink loads of water as that thins it out ,you will find a lot of useful and friendly advice on here and it is so good to know your not alone !! hope you feel ok soon x
Hi redonyou and a very warm welcome, although I am sorry to hear of your health issues and truly empathise as I have had bronchiectasis since babyhood in 1948 (so you will note from that it is not life limiting).
Has your consultant done a sweat test to illiminate cf and they may refer you to an immunologist also.
You are doing the right thing cracking on with your lung clearnace. Have you been taught by a respiratory physio to do this? If not please ask your consultant to refer you. Lung clearance is the most important thing we can do for ourselves.
I have used carbocistine a long time ago and it does nothing for me, although I believe some people like it. We are all different. Do you have in inhaler or nebulise a bronchodilator? I am also wondering if the saline you are using is isotonic (0.9%), which is the same strength as all bodily fluids. If so and this is not helping you might want to ask your consultant about nebulising hypertonic saline which comes in 3%,6%and 7%. It would need to be your consultant as you would need your first dose assessment at the hospital.
Thank you so much for your response! And for the link 🙂
I’ve had CF and immune tests which have all come back negative. And yes I’ve been seeing a respiratory physio for about 5 months now - I felt a slight improvement for a couple of months but have felt recently that’s it’s not helping much, if at all.
I nebulise 7% hypertonic saline, which has actually helped quite a lot.
Sounds like you have a proactive consultant and that you have been doing all you can to help yourself. I wonder if the physio can help with a different method of lung clearance which you might find of more help.
Sputum samples are not perfect but a very useful guide. We can for various reasons get false negative results. Maybe you could send of another sample in case you have an infection lurking.
Wishing you the best.
Cx
It takes time & experience to get the hang of really effective physio, but it’s essential to limit infections. Also, if you get mucus plugs blocking the small airways, it really lowers your lung function. You’ll notice a difference once you’ve perfected your technique, but as cofdrop-UK says, you need some sessions with a specialist chest physio. Carbocisteine did zilch for me. 7% saline helped a lot (tho I’ve had to stop using it this winter as it started causing bronchospasm.) It’s a nightmare when your mucus is very thick & sticky. Mine’s like the stretchy slimy stuff you can buy for kids to play with (sorry, gross!) On a positive note, I’ve had bronch nearly 25yrs now & apart from various setbacks have had a fairly normal life of work, family etc, so it IS manageable. I’ve got a great GP & am lucky to be looked after at a specialist chest hospital. Makes a huge difference.
Yes that’s what I’m hoping, that I’ve just got to get hang of the technique and it will click onto place. So reassuring to hear it’s manageable on the long term - it was a bit difficult to deal with getting the diagnosis so to hear someone coping with it with a normal life is so good.
Unfortunately I’m having a few issues with my GP and hospital consultant at the moment and not getting many answers or help when it comes to testing for infections etc. Hopefully this will smooth out too in the long term!
Hi, welcome to the site, I too have asthma and diagnosed with bronchiectasis about 7 years ago, although I think I had it much longer. I don't think I can add to the advice given, just keep active and keep clearing those lungs and take your antibiotics when you have an infection. Take care x x
Hi redonyou, sorry you are suffering with the stringy phlegm, it really is nasty this bronchiectasis. I was diagnosed in 2012 and like you I knew nothing about bronchiectasis. Luckily, I had a great consultant and a really helpful resp nurse. The best piece of advice was coming on this site as we all try to advise and help one another. Please keep a daily diary so that when you see your consultant he/she can see what you are going through. I did this because I found every time I went to the hospital I only told the doctor half of my problems. The consultant was very pleased I had kept a diary of events as it told him exactly what I was suffering/how many antibiotics I had had and how they had helped or not helped me. I take Azithromycin 3 days per week and I call it my miracle pill. I am able to lead a relatively normal life and I have not had pnuemonia/or been hospitalised for 6 years which has been wonderful. I only have bronchiectasis mildly but plenty of others on this site are at different stages of the complaint and we will all try and help you. Good luck and take care of yourself. Maximonkey
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