Apologies for the long post but I would be so grateful for any advice or shared experience.
I was diagnosed with Bronchiectasis ten years ago and then given Azithromycin for three days a week. I took this for a year and it helped enormously but I developed Ulcerative Colitis and had to stop taking it. Since then my Bronchiectasis has been fairly well controlled until this year. I’ve had seven chest infections which have finally cleared up and I have not had to have antibiotics for two months. Unfortunately I have developed a very bad wheezing at night time which is causing terrible sleep issues. It’s still there during the day but intermittent and I can ignore it. I am currently having to sleep (or attempt to) propped up on four pillows, but this still does not help. The wheezing is in the same place; it feels like something is sticking or obstructing my breath. I have had several visits to the GP who has referred me back to the hospital but I am still awaiting an appointment.
To be honest, I feel quite worried now; and exhausted with such poor sleep.
Any advice would be gratefully received.
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rosco59
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hi rosco59. I' sorry that you have been struggling this year. 7 exacerbations in a year is not usual for bronch and means that it really needs attention from someone who knows what they are doing.
Your GP is out of their depth with you and you need specialised help. It seems that you have not been getting the right antibiotic in the right dose or length of course to really tackle whatever bacteria is giving you the problem. Hence the resurgence very quickly afterwards.
Bronchiectasis is far too complex to be left to the efforts of a GP. They simply know nothing about it and confuse its treatment with copd.
I'm afraid that you are going to have to get pro active. Simply being referred to the respiratory unit leaves you at risk of being seen by a general respiratory consultant. These do not have enough training or experience in bronch to know how to treat you efficiently. You need a bronchiectasis specialist and once you get to them you need to remain under their care with regular visits at least every 6 mths and the help of their physios and bronch nurses.
I suggest that you look on the websites of teaching hospitals in your area. Find a bronch specialist. Take the name to your GP and insist on a referral. DO NOT TAKE NO FOR AN ANSWER.
It could be a good idea to ring the consultant's secretary, explain that you have bronch which is not being treated properly and ask if they would take you on from a referral from your GP. You can then go to your GP armed with this information.
The normal amount of bronch exacerbations in a year is 1-3. Getting into a spiral of many and frequent exacerbations leads to more damage and needs to be knocked on the head asap.
Good luck. I do hope that you soon get proper help to end this cycle of misery.
Thank you so much. That’s very helpful. I’m afraid I’m not very proactive but I see that I need to be. I really appreciate you taking the time to reply.
Take someone with you when you see any medical people Rosco. That really helps us to have the necessary courage to communicate firmly with our GPs. Also I think that knowing they are being witnessed make them feel more accountable. Good luck.
I've been diagnosed with Excessive Dynamic Airway Collapse (EDAC) which I think is the same as bronchiectasis. After a bronchoscopy, I was told that there was nothing anyone can do.Is this because I'm living in Australia, it's very upsetting.
Bless Littlepom for her excellent advice. It's hard to be proactive on our own account- much easier to stand up for someone else, but you have to try. I think (in theory) that it's better to be that bloody woman who all the receptionists and doctors at the surgery wish would go away than the nice, mild, quiet little person who suffers in silence.
I will definitely try to be and I think the earlier advice of finding a decent consultant and taking someone with me to the doctors is excellent advice. I have had a cursory look on the internet but the only bronch specialists I can see are at the Brompton which is a long journey for me from Southend.
Brompton has a very good reputation. I would start saving your pennies and prepare to take a taxi if you can get an appointment. PS. I'm in north Essex. I was very impressed by the young lady consultant I saw at Broomfield Hospital in Chelmsford. She was not described as a bronch specialist, but she did seem to know a lot about bronch- put me through a very thorough series of tests to arrive at a diagnosis. Can't remember her name, but must have it somewhere.
Thank you for that. If you do happen upon her name at some stage would you please kindly pass it on? Please don’t go to any trouble though. I think perhaps I just need to get the soonest appointment at the moment to get this under control and then set about finding an appropriate consultant.
Hello Rosco, My consultant was Dr. Abigail Moore, but the waiting times at Broomfield are horrific and I don't know if they take referrals from outside their district. It's a nightmare, trying to get what you need. I hope you get something soon. xxx
hi Roscoe.uv a ot to deal with, having ibd too.do u do twice daily mucous clearance frm lungs?ru on carbocysteine to thin it?yr consultant will have a lung physio u can ask to see for advice re this.meanwhile ALUK ave viideos+advice online.its yhe single most effective tool we have
No I’m not. I’m only on inhalers for asthma. I haven’t seen a consultant for nigh on 7 years, mostly because I haven’t had any problems to speak off but have managed with chest clearance. I will definitely ask about this when I see the consultant. Thank you.
it does sound like u may have mucous rattling at night.id be inclined to clear am+pm and if u dont already?perhaps use salbutamol puffer b4 bed. Little tweaks can make a big difference.its that time of the year too.x
I feel for you. I was on the wrong antibiotics for 10 odds years but once I started the same course as you, I improved no end. So much so they stopped my very low PIP. However, I also developed tummy problems and I am not sure if it is linked to the antibiotics. So I have stopped for a while. Chest wise I am really not sure as I seem fine one moment but bloody awful later. I cannot help other than to repeat keep complaining . I was clearly too soft.
It’s a bit of a minefield having Ulcerative Colitis too as that’s been the difficult one to control but that has settled well this year so it’s been rotten to have the bronch flare up now. I think I will ask to give Azithromycin another go but maybe just got the winter months.
Thank you, all the best to you too. I hope you’re tummy issues improve soon.
good morning rosco59 I am so sorry to hear what your going through with your bronchiectasis.. and yes your right not many doctors know about bronchiectasis. But I with my doctors every time I get a chest infection I have antibiotics for two weeks as when I found out I had bronchiectasis it was the hospital who wrote up to my own doctor to put me one two inhalers they called tiotropium and have fostair one allso and I am on the blue one as I got asthma allso. And I am taken. Carbocisteine to help to clear my lungs up. But with your wheezing I am thinking that you still got a infection or they should give you inhalers to help with your wheezing until you feel better. As I have a chest infection and my doctor put me on two weeks of antibiotics and I take my inhalers as I seem to cough more when got a infection. And yes your right some doctor's do not know much about bronchiectasis as before I found out I had it my doctor was saying it was copd as was coughing for ages but when I went to hospital as soon as I explained everything to the doctors there she said its not copd it might be bronchiectasis but have to have a MRI scan which I did and it showed that it is bronchiectasis. And all I was told to stop smoking I said I never smoked in my life beven around people that do but it can be anything why we got bronchiectasis could be when we were small having chest infections all the time. I hope you get some answers soon as not nice waiting to be seen. But with covid everything changed. All the best and please let us know how you get on.
Thank you for your kind reply. I do take Seretide and ventolin for asthma but I think I obviously I need to push for a complete review of drugs and inhalers. Carbosteine definitely seems to be a must.
Indeed Covid has made our lives that bit more trying.
hI the carbocisteine tabets they give them to people who have lung problems or got bronchiectasis I would get back to your doctor's about it. If you put down what these tables are for than you should have a better clear about them. Yes and see if you can see a nurse at least to see if you can get a review on your drugs. All the best and let me how you get on
hello good morning I know as soon as you got a cough or infection and lung problems they put it down to smoking I never smoked in my life only passive smoking but doctors say that's even worse.
hi rosco59, sorry to hear that you are having so many problems, GP are not trained in bronciactsis as aes consultantsaf the hospital. I am on joint care take saline nebs, fostair, ventolin and have an emergency pack off co-amoziclav. Do you send in a sputum test each time you have an Infusion? As I have had to have me antibiotics inthe last few years depending whats growing in my sputum at the time. Please ask your doctor to refer you to the hospital they can give you breathing tests, xrays, physiosend you to pulmonary rehab and adjust your meds as required. Please get help to get back ounder control. Good luck, take care and stay safe.
yes! you need to be your own manager and know your body. I have good doctors, but was let down badly by a local the other week, hence its your job to know what's best. Good luck, take care and stay safe.
as everyone says expert in bronchiectasis is the best thing also clearance techniques of the mucus will ease symptoms, I know I bang on about it to everyone with bronchiectasis but it is essential for the wellbeing. Also having a sputum culture done to analyse what bug you grow and having the correct antibiotics for that one is also essential. Elevation at night helps a great deal to stop the trickle of mucus building up,Wishing you better soon
Thank you so much for replying. Each time I’ve had an infection I’ve given sputum samples and had the appropriate antibiotics, but some don’t seem to work as well now, even with 14 days worth. It doesn’t help that I care twice weekly for two small grandsons who I love so much, but who are just little balls of germs!
I’m sleeping propped up on four pillows which usually helps but currently isn’t doing much. You are so right about lung clearance though - I have become very lax at this, mostly because I feel so drained at the moment, but will definitely follow your suggestion.
Thank you to those who have replied - it’s a very lonely disease and just knowing there are people out there willing to share their wisdom is very comforting.
if u use salbutamol prior to lung clearance, it will make it easier and do drink additional fluids. It maybe worth taking hi dose vit c and d to build immunity up.i get my grandchildren to use my antibac gel whn they come in my car or house.its habit now.x
It definitely is a lonely disease Rosco , being desperate for some company but too unwell to socialise.
I need to find a hobby especially with the winter months ahead.
Oh regarding the smoking comments, I've had bronchiectasis since I was a baby , and had a lifetime of comments from strangers when they hear me cough , it's so annoying.
Excellent reply from Littlepom as usual. Whist it may seem a long way to go the Brompton it will be worth it to get proper care. I have a 130 mile round trip to see my team but it has been worth it. A lot easier now with a lot of telephone appointments. I’m not sure if BLF could help with a Bronchiectasis specialist it may be worth giving them a ring. There’s a lot of hospitals between Southend and London. Good luck I’ve been where you are now and it’s awful but you can get through this with the right help.
That’s so kind, thank you. Could I ask if you had a long wait to see someone there? I feel a bit like my life is on hold until I can get seen. It’s just turned into a bit of a daily struggle. I know so many of you relate to this on a long term basis so I hate to sound so feeble.
You don’t sound feeble at all and yes we know how awful it is. I don’t actually go to Brompton, I go to Addenbrookes. I have an excellent team who look after my ailments and have been going there for nearly 10 years so my initial wait wasn’t long but things are different now. My respiratory doctor at addenbrookes did ask for help from the Bronchiectasis doctor at my local hospital and I did have to wait a few weeks to see him. He comes with an excellent team of nurse specialists who I can ring and they will call back. He is based at Norwich if that’s an easier journey for you. That would be a train from Southend vic and a bus ride to the hospital.
Yes of course, I saw Dr Pasteur. He was also in charge of my care when I was last admitted and it was helpful to have a doctor that knew about bronchiectasis.
I was tried on Azithromycin, and it gave me terrible mouth ulcers, so stopped those quickly. Yes, Carbocistiene helps a lot. I've told this tale countless times: after the removal of Black Mould from our bathroom in March 2018, I have had no chest infections. Before that I had many, (18 in 2017 and a similar number in 2016). Worth investigating. It will be wherever water is leaking, i.e. kitchen, bathroom or leaky roof. Also, I sleep with my trunk fairly upright in an adjustable bed. Before that slept in an armchair. Also, I agree with others who say you must find a lungs problem consultant.
What a terrible time you are having, I do hope you can get the help and support that you so desperately need. Antibiotics and saline through a nebuliser twice a day has been a game changer for me after a year of oral antibiotics not working at all. Do you use an Aerobika device daily to clear the gunk off your lungs? this may be why you are so wheezy. Also keep drinking lots of water to thin the mucus, I don't take any mucus thinners at all, just keep drinking& using lung clearance techniques. I really feel for you with the lack of help from your GP, I have the same issue, she never diagnosed my bronchiectasis, just kept calling it bronchial residue!!! Hope you can get on a better path, look after yourself .xx
I don’t. To be honest I’ve not heard about most of these things so I’m so pleased I asked for advice as all these replies have helped so much. I do drink lots of water but I have let that slip a bit too so will get back to doing so.
Have you tried nebulising before going to bed? That and a flutter help me enormously when I am wheezy. Double up on the mucoclear if necessary. And the obvious one of drinking lots of water (sadly instead of not being able to sleep because of wheezing you won’t be able to sleep because of going to the loo!). Carbosteine helps me too.
Occasionally I use eucalyptus oil in hot water to try to dislodge mucus from my chest. But I can’t be bothered to do the bowl and towel combination, but just hold a mug if hot water with a few drops of eucalyptus oil under your nose and keep breathing deeply.
No I’ve never had any advice about nebulising or Aerobikas but I imagine it’s partly my fault for not asking the right questions. I think because my lung issues were relatively under control and the UC was giving me more issues, I wasn’t proactive enough with the Bronchiectasis side of things. I realise I must start taking control of my own treatment and start asking for more help. Thank you so much.
The hospital will do the right tests should find out if it is the Bronchiectatis or something else
Do you do clearance techniques e.g. Actitve Cycle of Breathing - Acapella ? If not, if it is Bronch, that might help during the waiting time. (But do find out to do this from reputable sources/videos when looking at Google - so no damage is done).
If you have Bronch you can pick up lung infections more easily so perhaps (if you're not already) wear a mask again in supermarkets.
Yes it is definitely Bronchiectasis. I was diagnosed after ending up in hospital for a week with pneumonia 10 years ago. I realise that I’ve probably not been as stringent with lung clearance as I should be and will definitely make sure it’s a twice daily part of my routine from now on. Thank you for taking the time to respond.
hi Littlepom. Have your tried a flutter device? I was prescribed one and although I don't use it that much - when I do , it does help to shift mucous. A respiratory nurse should be able to help you with the correct technique of using one as it can be tricky to get it right.
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