Bronchiectasis - silly question?

[Beshmeta]

I wa diagnosed with mild Bronchiectasis five years ago (and I’m asthmatic). I try chest clearance daily but I almost never have a clear chest. Is this normal? I’ve had a few chest infections over the past few years but nothing too horrible. This year i’ve Started getting chest pain and other chest aches - is this something to expect or a sign of something more untoward? I’ve never seen a consultant since my diagnosis and I wonder whether I’m doing everything I can to keep my lungs healthy. Any advice/insights appreciated. Thanks!

[Bkin]

As you have had Bronchiectasis for five years Beshmeta I assume your current symptoms are new ones this being the case I would chat with your GP, chest aches and pains could be lung related as in chest infection or it could relate to something else, so definitely do discuss with your GP. Hopefully your doctor will refer you for further tests.

Regarding keeping your lungs healthy, you could ask your doctor to refer you to a on or off line pulmonary rehabilitation programme which is an education programme that will help you manage things better. In addition you may want to check BLF's page on Bronchiectasis which includes lots of information including self management - see the relevant tabs, across the page here blf.org.uk/support-for-you/...

Best wishes to you.

[Beshmeta in reply to Bkin]

Thanks for replying Bkin. I think you’ve confirmed my thoughts that I need to follow up my chest pain. I did have some physio instruction after diagnosis but I never really clear my chest fully (I use a flutter device every morning). I will check the resources you mention. I think it’s just difficultto know what is ‘normal’ and what isn’t - I get the impression that some people clear their chest every morning whereas I always have a wheeze even after doing my exercises. Is this just my ‘normal’ or am I not doing enough?

[Bkin in reply to Beshmeta]

Only you can really answer that Beshmeta, if this has always been the case perhaps it is your normal, but if this has come about recently this indicates a change and hopefully will not remain your new normal. I believe wheeze is more common with asthma even though I don't have asthma I do wheeze from time to time, not a common occurrence though.

[Beshmeta in reply to Bkin]

Ah yes, that makes sense - thank you!

[Saintssuperfan]

HelloI was diagnosed with Bronch. in 2017 and have been asthmatic since 1995.

The chest pains you describe are abnormal and you need to contact initially your GP.

Can I suggest that as a minimum you need to be using your 'flutter' device morning and evening. I take medication including carbocisteineto help with clearance of the lungs and a fostairinhaler to treat the asthma symptoms and help open the airways (two puffs twice daily). Breathing and other exercises are also recommended.

I am concerned that you may not be receiving treatment for all your lung conditions that is why I have outlined my basic medication and treatments as above which I believe are fairly standard.

You may also check whether you have a community respiratory physio service (they may have delivered the flutter device to you and demonstrated use).

All the best for the future.

[Beshmeta in reply to Saintssuperfan]

Hi, thanks so much for the info. I will get in touch with GP - I think the pandemic has stopped me being so proactive. I usually have a yearly check with asthmas nurse but this didn't happen during lockdown. Also, the flutter device I bought myself so have never been shown how to use it but it seems straightforward, so didn't imagine I'd need a demo. I have had carbocisteine in the past but didn't find it made any difference. I also take Symbicort 2x a day for the asthma. I've noticed by peak flow has been declining but put that down to not doing much exercise (winter and lack of motivation stopped me going out). Thanks for taking the time to reply.

[Lolndol in reply to Beshmeta]

I would definitely request to see a respiratory specialist. I have had bronchiectasis for a number of years and have been prescribed Carbocisteine which I take 2 per day but have been told that I could take up to 6 per day if necessary so I would check that out. Also I’m taking Azithromycin 3 times per week which is an antibiotic but also works by reducing the inflammation in your lungs. Since taking these medications I haven’t had a flare-up for 15 months so this has proved to be successful. I’m also experiencing fatigue which may or may not be due to the medication but is probably just a normal symptom of bronchiectasis. I would hope that the specialist will advise. I do lung clearance exercises every evening for about 30 mins and this is essential. I hope you get to sort this out. Best regards.

[Beshmeta in reply to Lolndol]

Hi Lolndol - thanks for your reply and insight into your treatment. I know everyone is different but I find it really helpful to hear about what others are experiencing. I don't know anyone with this disease, so it's hard to know what the options are and what other people experience. I have called my GP so hoping to push forward with a consultant appointment soon. I did have a few weeks physio after diagnosis but found it didn't do much, which is why I ended up buying an acapella, which does help. Best wishes.

[cofdrop-UK]

Hi Beshmeta and a very warm welcome to you. No question is silly, only the one you don’t ask which is worrying you.

Love your proactive attitude, which makes me sad you sound as if you are being short changed.

I assume you had a ct scan to diagnose bronchiectasis and it appears your treatment has been undertaken by your GP. If it were me I would defo look online for a respiratory consultant with a special interest in cf/pcd or bornchiectasis. Believe me it makes a huge difference. I have had bronchiectasis since the start of the NHS and asthma more recently and during my lifetime I have had good, bad, indifferent and excellent clinicians. You could contact the consultant or their secretary and explain you note they have a special interest in your condition and your concerns recently and ask if they would consider taking you under their care. If they say yes, then all you have to do is let your gp know and ask them to refer.

A con would refer you to a physio, an immunologist and hopefully start from scratch with tests etc. Once on the correct treatment you will hopefully have a much better QOL.

Re the chest clearance. It is quite normal not to completely empty all the gunk from your lungs but you will have put in the work and may notice it keeps on coming for a little while after. We are all different and find lung clearance is more productive at some times more than others. Personally I do lung clearance following nebulising a bronchodilator and hypertonic saline in the morning and evening. You might find using a bronchodilator inhaler prior to lung clearance helpful.

I will put up a link for you from the very reputable European Respiratory Society called Bronchiectasis- Patient Priorities, which I was involved with for a while, having to give it up because of other health issues. It is best to dip in and out of as it goes from explaining how ‘normal’ lungs work, bronchiectasis lungs, treatment, self management, videos on lung clearance to more advanced discussions between clinicians and the first Patient Advisory Group/ELF/ERS conference, which was so well don - all credit to them.

europeanlunginfo.org/bronch...

Good luck and please let us know how you get on.

Love cx

[Beshmeta in reply to cofdrop-UK]

Hello Cofdrop - thanks so much for all the detailed info and the link - I will investigate fully! I was diagnosed with a CT scan but the one appointment i had a consultant was very disappointing - she told me nothing and said my condition was only an inconvenient cough! I have rung my GP today and hoping to speak with them next week. In the meantime I will look for a respiratory/bronch specialst. Is there a directory you can recommend for researching this?

[Lolndol in reply to Beshmeta]

I can recommend a respiratory consultant I used who was highly recommended to me. I saw him at a private hospital in Solihull near Birmingham. He may also practice elsewhere but I’m not sure. He charged £240 for my first 1 hour consultation and subsequent visits would be less. I suspect the NHS waiting list will be months or years, another consequence of the pandemic. Let me know if you want me to send details. Regards.

[Beshmeta in reply to Lolndol]

Hi - I'm based in Surrey so Solihull is a bit far for me! If you don't mind sharing his name I can search to see if he's anywhere nearer. Otherwise, I suspect one of the London teaching hospitals will be my best bet. Thanks

[Lolndol in reply to Beshmeta]

Hi Beshmeta. I used Dr Salman Ghani, consultant in respiratory and general medicine. His secretary’s number is 073657 22252 and email [e-mail] Hope he can be of help.

[Beshmeta in reply to Lolndol]

Thanks Lolndol - I will check him out.

[cofdrop-UK]

Just make sure you don’t get that con again. She’s not living with it and it’s a cop out of a comment.

There isn’t a directory no but if you could let us know of a city or town you have access to there will probably be someone here who could help you. Some people travel for their ongoing care. The only problem there would be if you had an unplanned admission, it would be to your local hospital. You may actually have a centre of excellence near to you. If you don’t have any luck then please let us know.

Cx

[Beshmeta in reply to cofdrop-UK]

No, I don't want that consultant again! I was very cross about the remark but of course, didn't say anything at the time. I'm based in surrey but can get the train into London. I know the Brompton has a respiratory clinic and I did ask my GP if I could switch to there instead of Royal Surrey but they said no. I can pay for private consultation if need be. So far, I have avoided any hospitalisations so all good there!

[cofdrop-UK]

Would you be able to go to Frimley? Xx

[Beshmeta in reply to cofdrop-UK]

Yes, easily. Does it have a good respiratory dept?

[cofdrop-UK in reply to Beshmeta]

I will pm you.Xxx