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British Lung Foundation
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Bronchiectasis

A Dr recently mentioned Bronchiectasis with regard to my repeated lung infections. He said it so quickly that I didn't have a chance to ask for an explanation.

The internet is omniscient but can be scary and confusing if you can't discuss with it, so is there anyone out there who has experience of this condition please?

26 Replies
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Welcome to the forum. Whilst you are awaiting replies, the BLF produce leaflets on Bronchiectasis. Have a look here for some information:

blf.org.uk/support-for-you/...

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Hi and a very warm welcome. When you say your Dr. mentioned Bronchiectasis, are you talking about your GP or a respiratory consultant. If it was your GP does he intend referring you to a resp consultant or arranging a CT scan, as a scan is necessary to show up exactly what is going on - an xray just won't do. If GP suspects Bronch then you need to search out a respiratory consultant online who has a special interest in cf/and or Bronchiectasis. Please don't trawl the internet re bronch. Stick to the reputable bronch sites ie BLF or Bronchiectasis R Us.

Please let us know if you have yet to see a consultant and/or a scan. When you are more sure there are folks on here who can let you know the kind of stuff you should explect from your consultant and ask. There are also links we can forward to you but there is no point in getting ahead of yourself at this stage and overloading yourself. Please let us know how you get on and we will support you.

love cx

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What a lovely reply!

I saw a brusque GP who mentioned x-ray and CAT scan but batted away my request for referral because he said that I would have to wait a long time to see one...

I'm on a 14 day antibiotic course, 40 mg prednisolone for 5 days and was advised to go back next week for check up.

I have asthma and have coughed for way too long, even with asthma meds. After 3 consecutive skirmishes with chest infections, a consequent cracked rib and having found this amazing forum, I feel completely justified in talking to a GP next week with the evidence and confidence to insist that I have a proper diagnosis from a specialist.

I know that GPs hold the purse strings for recommending referrals and are looking forward to their bonus at the end of the year but it's our money and health at stake. So I'm taking no nonsense from them!

Thank you so much for your reply. It made me feel more informed and supported than any Asthma nurse or GP have managed so far.

Take care Ex

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Well I have to say Elizabeth you have certainly learnt one thing for yourself which is absolutely necessary and that is if you have bronchiectasis you have to be your own advocate - so good on ya.

Sounds like GP has agreed to a scan - I'm sure you will make sure he will follow it through. If you tell us of a large city you would have access to easily, we may be able to point you in the right direction. We all get to know the names of the proactive consultants within this field and it would save you muddling through as I have done for 69 years with good, bad, indifferent and excellent consultants. Thank goodness for the internet!

Please let us know how you get on.

love cx

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Thank you for a great reply.

Are there any good lung quacks in Birmingham or Coventry?

Basically I will go wherever there is the most experienced lung specialist.

Take care. Ex

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The rules state we should pm any details of docs but I think this info is not recommending or knocking a particular consultant, so I think it will be ok. This list is not new and so the consultants may have changed and you will need to check out each individual doc, but it's a start.

Birmingham

Birmingham Heartlands Hospital West Midlands Adult CF Centre Ward 26, 1st Floor New Medical Unit Bordesley Green, East Birmingham B9 5SS

0121 424 2000

Dr Joanna Whitehouse Dr Ed Nash

Dr Rifat Rashid.

cx

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Thank you. I shall do some research.

Ex

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Queen Elizabeth Hospital Edgbaston. Dr Anita Sullivan. My consultant for the last 13 years and before that as registrar under Prof Rob Stockley.

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Thank you.

Ex

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I had all the symptoms of Bronchiectasis for over 5 years ,my doctor would just give me antibiotics and send me on my way . I was paranoid about avoiding people with coughs and colds ,if my husband caught a cold I would carry wipes in my pocket to wipe everything we both touched. Last year she diagnosed fluid on the lungs .

She asked for advice at last and sent me to a diagnostic day centre. I had loads of tests which were ok but the ct scan confirmed Bronchiectasis.

My doctor obviously had little knowledge of this disease . I had to be very firm and say I wasn't getting the help I needed .. She eventually referred me to Hemel Hempstead Lung clinic . I go for a barium meal X-ray on Wednesday,have had allergy tests and am being referred to a physiotherapist as I am unable to cough anything up. I just get very tight chested.

I have found out that very many doctors know little about the disease so just keep dolling out the antibiotics. I find this appalling . I could have got help years ago instead of struggling along

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Hi Elisabeth and welcome. You did the right thing asking us for advice rather than looking at all of the misleading and scary stuff on the internet. I am 67 and have had bronchiectasis as long as I can remember. I have led a full life and I am still giving it plenty.

Bronchiectasis comes about because of some damage to the lungs, usually caused by pneumonia and in the old days, whooping cough. People with a condition called A1A Antitrypisin Deficiency, which is a genetic condition, can get bronch because the body is unable to protect the lungs from infections which destroy the tissue. In roughly one third of cases, no cause is ever found. I am one of those. Fluid collects in the damaged parts of the lungs or airways and becomes easily infected. Therefore this needs controlling by getting any mucus out of the lungs every day and the right antibiotic therapy to fight any bugs in there.

One of the first signs is the recurrence of chest infections when normally a course of antibiotics would knock an infection on the head. There is quite a lot of info about living with bronch that I and other members could give you but I think that the first thing is to get a proper diagnosis.

Well done your Dr for recognises that you could have this. I'm afraid that many are very uninformed and it is often misdiagnosed as asthma or COPD.

So, you need to go back to your doc, if possible armed with the name of a bronchiectasis expert at the nearest large teaching hospital to you. Get a referral for a full diagnosis.

Many chest consultants are not experts in bronch although they like to list it as one of their 'interests'

Bronchiectasis can only be diagnosed by ct scan and usually, alongside that the consultant will have respiratory tests ( puffing and blowing) done to ascertain how the bronch has affected your breathing, lung capacity and oxygen exchange.

The consultant will then write to your doctor telling them how to treat you. Which antibiotics to give you when you have an exacerbation (infection) and maybe inhalers. You should also have the help of a physio to teach you the best way to expel any mucus which you may get in your lungs.

Because all of us have different damage to our lungs, every bronch is different in their reactions and needs.

We do have one thing in common, we do our best to get on top of our condition and manage it so that we can have normal happy lives.

I hope that this helps and that you find out what is causing your infections.xx

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Another lovely reply! Thank you so much for your positive response. I'm receiving amazing support in such a short time and feel heartened by your inspiring story.

I was diagnosed with asthma 11 years ago. The meds have helped somewhat but my cough has persisted and worsened with age, I'm 51.

After 3 consecutive chest infections and a consequent cracked rib I now know, from reading posts on this forum, that I have every right to ask for a consultation with a specialist. The last GP that I saw dismissed my request to see one because he said that it would take too long. I've done 11 years so far, I think I can manage 18 months to get a proper diagnosis!

I shall search for a suitable lung specialist and with renewed confidence, inspired by peapole like yourself, will insist that I be referred to a specialist.

Take care and thanks for your advice! Ex

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Last june this happened to me. No clue what it was and only just in March this year saw a consultant. CT scan in April, results in June saying nope, nothing on scan so just last week did breathing tests to be told normal.

Now, still on steroids for two weeks every month, still on antibiotics every month and still produce lots of sputum.

Twelve months and still no clue why!

My advise, insist, insist, insist, oh and don't go on the internet as scared the bejesus out of me?

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How frustrating for you! When you feel unwell and without an explanation you can feel out of control, stressed and unable to move forward.

I don't know if this is relevant to you but have you considered that dairy products may be contributing to the amount of sputum that you produce? I'm sorry to mention it if you've already looked into dairy and possible allergy/ intolerance, but I know from experience that dairy exacerbates my asthma and makes me feel like I have flu.

The internet is a terrifying Pandora's box but at least I've stumbled upon this lovely well-informed forum and good people like yourself and all the support that is out there!

I so hope that your condition improves and that the specialist can help you to understand what's going on.

Take care. Ex

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Hi

I don't actually eat much dairy as l did identify that it was making things worse.

You're right, feel in no mans land and just want to know what t is, how to help myself and what, if anything, can help medication wise.

Yes, l love this forum. Not been on here long myself but found the support and knowledge of others invaluable. One person told me l could ask for my antihistamine changing. Had no idea l could. To,d me the name and l am on that one. So far, much improved.

No doctor ever told me about this or suggested changing. Been on the same one over 30 years!

Thanks for chatting.

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I've been with the same doctor for over 30 years also.i think they get to be a bit complacent after so long .Iv seen a lot of her over the last 9 years due to a back injury 3 ops and compression of the nerves . I think she thought my Bronchiectasis was just stress. I knew it was more than that and it took a long time to convince her there was more to my coughing and wheezing. I think it helps to have a change of gp every now and then.

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Interesting as it was a different GP who sent me for tests. Normally see the me lve had over 30 years.

The CT scan showed no, l didn't have it and breathing tests were normal but back on the steroids again as wheeze and produce like nothing.

I know my size can give a false negative being so very fat but no one seems to be thinking that.

Ahh, well.

Thanks for the reply

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Off to see a fierce new dr today armed with bullet points and gritted teeth to request some diagnostic evidence.

I avoid my own dr as she always seems to have had the same condition as me and says that we just have to be kind to ourselves and get on with it.....

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Hi Elizabeth K. I had pneumonia about 8 years ago after recurrent chest infections. I was admitted to hospital and had x rays and Scans which showed early bronchiestasis. Basically I take an inhaler now but have antibiotics and steroids for flare ups. If you are really poorly then go to a & e like I did as you may get referred to the chest clinic as I did. Some gps are very good and will refer you or even send you to a& e if you are very poorly. Persevere in order to get a result. You are entitled to second opinions. I always find if I'm too poorly, I will go to a & e Rather than my gp Take care

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Thank you for your reply. I'd really like to avoid pneumonia so will ask for the vaccine, fingers crossed!

I seem to have coughed for ever and I'm not sure that asthma is all that I dealing with. I seem to have found myself a fairy godmother chiropractor who has started working on my chest to release sputum-very effective- and has given me a pep talk to encourage me to be more assertive with the GPs. I've also bought a pretty MOD standard mask for when I cycle and a "Flutter" to help bring up sticky phlegm.

I'm also grateful for online Drs booking as I can get in more quickly and bypass the dreaded receptionist. But good to know that A&E is there for emergencies.

Keep well. Ex

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Also bronchiestasis is in degrees of illness so you may be like me and not too bad or you could be any where on the spectrum. A CAT Scan will show them how your lungs are.

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Thank you for your reply. I'm pulling my socks right up, writing the bullet points and preparing to self-advocate (a skill that I've lacked so far) and will prompt the GPs away from prescribing perpetual antibiotics and and get them to focus on a diagnosis instead.

Ex

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Hello Elizabethk

Great advice from our very knowledgeable bronchs littlepom and coughdrop.

I'd just like to add my tuppenceworth...which is if you're on the antibiotic merry go round, please make sure you have a good diet, avoid people with coughs and colds, and take a good probiotic. Antibiotics will kill your good bacteria along with the bad and leave you open to more infections.

BTW I've had bronchiectasis all my life too (66 years) and it's been full and active.

😊

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Hi Moodygirl.

Thank you for your reply. As for probiotics I'm taking 20 billion of the little workers daily whilst under the shadowy umbrella of clarithromycin.

Did you see the BBC programme about sleep and the related importance of healthy gut bacteria an our ability to sleep well?

I love the positivity on this site and am relieved that I've found you all.

Ex

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Yes it's a great site for support and advice.

No I didn't see that programme Elizabeth; I'll try to find it on catchup.

Re probiotics, I read recently that plain Greek yoghurts get more probiotics into your gut than supplements. Not sure but worth looking into maybe.

I also take a prebiotic and Vit C for the immune system amongst other things....

😊

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I take active plain Greek yoghurts . The only thing I can stomach when I'm poorly .

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