Hello (new here, newly diagnosed) - British Lung Foun...

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Hello (new here, newly diagnosed)

GhostlyDinosaur
GhostlyDinosaur

Hi, I'm Rachel.

Diagnosed with bronchiectasis last week and not really sure what this is going to mean for my life. I've had asthma since childhood (well controlled for years) but this is different.

My home grown diagnosis was "my lungs make gunk" and my best home grown treatment was "run every day until I cough, to get rid of it". This seems pretty accurate so far. I'm waiting for a physio appointment, and trying carbocisteine to see if it helps.

Is there anything else I should be doing?

Thanks for being here and reading this. Grateful to know I'm not alone.

Rachel

19 Replies
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Hi Rachel and welcome to the forum. We have a number of 'bronchs' on here who have a wealth of experience and I am sure they will be along with suggestions when they see your post. :)

Thanks :-)

Hi Rachel Welcome you might find this interesting/useful. acprc.org.uk/Data/Publicati...

Thanks. Yes this looks very useful - much appreciated.

Rachel :-)

Hi a Rachel

I too have asthma and bronchiectasis. The bronchiectasis was diagnosed 10 years ago. I take Symbicort, Salbutamol, steroid nasal spray, Carbocisteine, Cetirizine and Azithromycin. About 5 years ago my Consultant prescribed me Azithromycin 3 times a week. I usually have 3 infections a year. The Carbocisteine helps thin the mucous and so does keeping well hydrated.

I have got used to the Azithromycin as long as it is taken with food. I asked if I could have a break and came off it in June but to start again in November.

Exercise is a great help, so you are doing the right thing. I have always kept active which I know has kept me well. I avoid anything fragranced and try to avoid traffic fumes as these are a trigger. The physio will probably show you the active cycle of breathing which is really helpful in clearing the phlegm. I also do some postural clearance. I'm sure you'll be fine and although I've only recently joined HealthUnlocked its good to know that everyone is very supportive.

I'm 65 and apparently the lung damage was from my breech (footling) birth, and I had whooping cough at 6 months old causing more damage. Fortunately I have never smoked and feel good for my age. Positive thinking also helps.

Hope my reply isn't too lengthy.

Best wishes. 🙂

Hi Sandy,

Thanks for sharing these details with me. I think it's helpful for me to see the details of other people's experiences so I have an idea of the range of possibilities for my future, and what to do about it. (I'm also aware that nothing is really predictable here and I need not to try.)

You have reminded me to add Salbutamol to my list of treatments, which feels so familiar and obvious I just forgot to mention it!

I'm looking forward to starting physio, and yes I also find a positive attitude very helpful.

Many thanks,

Rachel :-)

Hi Rachel,

Welcome

I too have asthma and bronchiectasis

Its very different to asthma as you've said

A good consultant,physio medication is a must.

Cough up the horrible mucus when you can and hopefully you don't get many infections

A stash of a 14day course of antibiotics at home is what i have as you can tell when it flares up.

Good breathing techniques are good also.

Its not very nice,just try and manage it best you can

All the best

Jenny

Hi Jenny,

Thanks for the welcome and advice - much appreciated.

I have a 7 day stash of antibiotics which my GP gave me earlier this year, when they thought I had CoPD - I'm hoping that the consultant will prescribe me a 14 day stash next time I see him.

I worry that I've lost my ability to recognise when I'm getting an infection, because I now ongoingly have the symptoms that helped me identify infections in the past. I'm getting to know my 'new' lungs now though, so I guess it'll become easier to tell again.

Many thanks,

Rachel :-)

I think dazzier 142 has summed it up perfectly. Take your Meds, keep your lungs as clear as you can and take your emergency antibiotics first sign of infection. You sound very active which is great. I don't run but I walk and swim which I find help.

When you are poorly rest and be kind to yourself. You take care x x x

Thanks Shirley. I'm trying to remember I to rest when appropriate, and learning to identify when that is.

Thank you,

Rachel :-)

Ask your doctor to prescribe a course of Braltus it will relax the muscles in your airwaves

Thanks for the advice.

Rachel :-)

GhostlyDinosaur

Hi Rachel, running is good and will keep you fit, it is the end product that 's not so good. I too use Carbocisteine but also have a very small tube that I use before my inhalers & Carbocisteine. It induces coughing to bring up the "gunk" How or why it works I've no idea but it does, may make the running more enjoyable. This little tube is made by Clement Clarke International. It's a one way gadget that allows only breath out, acts like a non return valve but works wonders. Look it up & maybe give it a try. Good luck with physio.

IKeith

Thanks Keith. I asked someone in the hospital about whether such a device existed, and she said I may be given one by the physio when I see them. There seem to be various different sorts. I'll wait and see what happens...

Thanks,

Rachel :-)

GD, there are a number available. I can attest, however, that Aerobika works very, very well. As much as anything else, the aerobika use was instrumental in my finally getting released from hospital after 1 1/2 weeks. Best Regards, judg69

Thank you, that looks interesting. I guess to start with I'll go with what the physio says, and then take it from there. But it's good knowing what's available, and how they're working for people.

Thanks again,

Rachel :-)

I'm a bronch too... The troops have given you great advice. Listen to your body, you know it better than anyone else does and be kind to yourself 😊

Thanks for reply, much appreciated.

Rachel :-)

Hi GD I have bronchiectasis and am also on carbociatine but was having too many infections next week I’m being put on azithromycin 3 times a week for a year it’s supposed to help stop infections. I was always active but now I also have peripheral neuropathy and I can’t feel my legs so I basically do no exercise I believe it’s the reason why I have gone down hill fast. See your post wàs 10 months ago would be interested to hear how your getting on take care

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