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Any advice welcomed

Daisydaff profile image
42 Replies

This is my first time on here and was after a little guidance maybe.

I was diagnosed with bronchiectasis in June following a Mobile CT scan (no consultant present). I was sent a copy of the letter that the hospital sent to my GP confirming my diagnosis and told that I would get a routine appointment in clinic. This was 10 weeks ago and the only information I have is the stuff I have found online. I spoke to a GP a few weeks ago (on the phone obviously - face to face appointments are a rarity where I live) as I was concerned about the colour of the mucus I was coughing up and I did a sputum test, which I presume came back negative as I never heard anything to the contrary.

Needless to say I feel that I have been cast aside somewhat and that I really need to get advice on how I should be managing my condition. I rang the respiratory clinic and was told that I was ‘in the system’. I was just wondering if it is ‘normal’ to be coughing up green goo several times a day?

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Daisydaff
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42 Replies
Oshgosh profile image
Oshgosh

Its dreadful at the moment.before I was diagnosed I was really struggling to cope.I ended up in resus and an 11 day stay in hospital.

Sorry I can’t be of any help x

Morrison10 profile image
Morrison10

Hi, welcome. I was born with PCD, that includes bronchiectasis. Yes if your sputum is green think you may need medication, hope your GP more helpful. You don’t say how old you are, but guess you’re not a teenager or in twenties, these symptoms usually occur in later life. There are specialist consultants for this condition, in major hospitals, hope you can go to respiratory clinic again soon. I cough up lot of mucus every day, and have to Nebulise twice daily, takes hour each time then have to sterilise equipment and do postural drainage to move mucus/sputum. Also have other item to use, take time in busy day. Good luck x

annaemmalucy profile image
annaemmalucy in reply to Morrison10

Welcome Daisydaff everything Littlepom said, I fully endorse

Hello Daisydaff and welcome. You have come to the right place. There are several members like myself, who have been living with bronch all of their lives ( I am 72) and know so much about managing the condition and the medics who are supposed to treat us and many who have been diagnosed later in life and have set about educating themselves in their condition.One thing is for sure. We bronchs have to be very pro active in our own interests. It is so usual for someone to get ‘lost in the system’. GPs know nothing about this complex condition because they are trained in copd, which is completely different and confuse bronch with that. When you make it to a respiratory clinic it is likely that you will be seen by a general respiratory consultant. They know very little more than GPs about bronch because they have very little training in it and don’t see enough cases. They are not up to date with the methods of self management which we have to do or the many different antibiotics and delivery systems which are available for our exacerbations and maintenance.

You need to be under the care of a bronchiectasis specialist who will have undergone considerable extra training and sees many cases every day. They are familiar with the fact that we are all different and tailor or treatment to that. They also tell the GP how to treat you. Any goid GP will be grateful for that. Bronch specialists have their own specialised physios who teach patients how to empty their lungs of the mucus in which bacteria grow and make us ill. This is crucial to living well with bronch.

Don’t wait to be led through the sausage machine. Look for a bronch specialist in your area. They are usually at large teaching hospitals. Take the name to your GP and insist on a referral. Do Not Take No For An Answer.

In answer to your question - yes green mucus is a sign of an exacerbation and in bronch needs treating with 14 days of high dose antibiotic.

As I said, we bronchs have to proactive in our own interests and vociferous in sourcing the right treatment

Good Luck

Lol1944 profile image
Lol1944 in reply to

All Brill advice as usual from you. Only hope Oshgos takes it up and acts quickly

CDPO16 profile image
CDPO16

Just saying hi and welcome Daisydaff.

peege profile image
peege

Hi, if my sputum is green or a good yellow (ie not clotted cream colour) I would certainly request a proper antibiotic from the gp.Also, in this day and age we have to call in for results of tests as many practices don't call the patient anymore. As Littlepom says, we absolutely have to be proactive in our own condition whatever it is. Yes, you're certainly in the right place, I've learnt so much here to turn around my appalling lung health of a few years ago.

in reply to peege

It's so encouraging to learn that your lung health and I suspect, your quality of life, have improved since you joined the forum. It proves that mutual advice and support really does work.

peege profile image
peege in reply to

Absolutely, although I'd had asthma (undiagnosed as a child) for some years I began inhalers in my 50s I knew nothing about lung health. My asthma had taken a downturn so after 3 years of several pneumonia, endless chronic infections I came here and not looked back. It's due to folks here not the NHS that I've clawed myself back to a somewhat better. Really it was poor NHS service that I deteriorated in the 1st place 🙄 but I didn't realise at the time. Thanks to you, Hanne, O2trees, Malvern Tony, Puff the Magic Dragon, Stilltruckin, dear Toci and a few more

santisuk profile image
santisuk in reply to peege

Absolutely agree with your sentiments Peege. Love to all the proactive bronchs on here who have fashioned me as a competent self-manager of the condition; such a godsend in the early stages of covid, when I could not return to the UK for regular reviews.

And Littlepom; you're my hero.

Santisuk aka Steve, currently recovering from a hip replacement in Bangkok and rural Thailand

Karenanne61 profile image
Karenanne61

Welcome to this friendly, funny and informative forum. I can't really help but I can see you've had some good advice already.

Carol_ALUK profile image
Carol_ALUKPartnerBritish Lung Foundation

Hi Daisydaff, welcome to the forum you can give our helpline a call on 0300 222 5800 and speak to our Clinical Team about the management of your bronchiectasis. You may also find the following link helpful blf.org.uk/support-for-you/...

Daisydaff profile image
Daisydaff in reply to Carol_ALUK

Many thanks Carol and to all of you who have posted replies on here (I wasn’t sure how to leave a general reply to all). I will certainly give the helpline a ring. Again, many thanks to all x

Jaybird19 profile image
Jaybird19

follow what littlepom says . she is experienced in the problems that we get when having bronchiectasis and always gives good advice .

teddyd profile image
teddyd

I would certainly be phoning my GP if I had a green sputom. I was diagnosed with Bronchietasis about 12 years ago , probably had it a lot longer. It takes time to get the hang of it all.

But a green sputam is the equivalent of a red flag and needs investigating. Hopefully you will get a consultant appointment soon.

I hope you feel better soon x

Greenthorn profile image
Greenthorn

Welcome to this site Daisydaff. I guess there are many members on this site who are unused to making a scene or complaining. Everything Littlepom has said is true. We need to stand up and bang on the table.i hope coming here will be a turning point for the better. Dont be Daisy Daft. Follow LP's advice and turn the corner. Let us all know how you get on. We are here to help each other.

Lfcpremier profile image
Lfcpremier

You probably need to put another sputum sample in & chase up an appt with a respiratory consultant who has an interest in bronchiectasis.It can be green from lying on the lungs a long time or it may be viral. But if is infected you need an antibiotic. In the meantime the main objective is to clear your lungs daily to prevent infections occurring. Many of us use carbocisteine capsules 2x2 daily to loosen the mucous. I have a nebuliser with 7%saline to help & then do postural drainage.

Sorry if it sounds overwhelming :it becomes a way of life after a while.

Good luck:keep pestering, don't allow them to fob you off!

Shrimpy-13-22-25 profile image
Shrimpy-13-22-25

Welcome. Sorry to hear you’re not well. Can you access your test results through your surgery website? Good luck

B0xermad profile image
B0xermad

Definitely sounds like infection and need a rescue pack for such times of a flare up,if you do a econsult to your gp they may send some to your pharmacy. Regarding your sputum test results I would put another sample in just in case it has changed since the previous one. Good luck and I hope you feel better soon and get the proper care you deserve

gingermusic profile image
gingermusic

No it is not normal to be coughing up green gunk several times a day. You need a course of antibiotics for 2 weeks probably along with Prednisolone for 6 days. You should ideally be under a Bronchiectasis consultant as GP's have no real knowledge of your problem. These consultants are found in the larger teaching hospitals and its well worth finding one and asking to be referred. Hope you get the medication needed really soon the antibiotic normally given is Doxycycline 100mg, Best of luck

V1burnuM profile image
V1burnuM

Hi Daisydaff,I know how scary it can be when things are happening and you don’t know what to do. I was diagnosed in 2015 with bronc and asthma and found it all overwhelming. Over time you will begin to realise what is a normal sputum colour for you and so be alert to changes. I find if the quantity is a lot more and I feel unwell then I probably have a chest infection. The main thing is to drink plenty of water to keep secretions loose and easier to cough up. Also exercise is key to keeping things moving. It is horrible having to get it up every day but try to think of it as a good thing that it’s all up and got rid of. I would just ask for some antibiotics to keep at home and take them if you’re worried, sputum tests aren’t always accurate I find and in the five days you wait for a result you can get quite ill, as I found recently. I agree with the other comments Gp’s and asthma nurses don’t understand bronc so you need a good consultant to advise you. Don’t hesitate to post a message on here if you need support.

cofdrop-UK profile image
cofdrop-UK in reply to V1burnuM

Good reply xxxx

garshe profile image
garshe

I have COPD not your condition but if I was coughing up what you are experiencing, I most certainly would be taking my Emergency Pack ,Antibiotics and Steroids. Although my GP is of no help whatsoever, I am very fortunate to have the support of my Respiratory Team

I can speak to them daily and they will even call at my home if needed. Also they work with My Consultant so consult with him..

Hope you find the right support soon.

I find The Respiratory Team are very knowledgeable in all lung issues. Once you are in the system hopefully you will have more support.. In the meantime there are a lot of members with your condition who will give you good advice. We are not qualified to give Medical Advice but can help with our experience..

Taje care and good luck xxSheila ⚘💕

Straddie profile image
Straddie

You should be given a rescue pack of antibiotics and steroids. Do you use Ask My GP for your surgery? It is worth telling them you are coughing up discoloured phlegm. It is the sign of an exacerbation. If you are coughing more than usual or more breathless put that in as well. Ask if they want a sputum test (but be warned they take about three days) and that you believe you should you be given an antibiotic.

Izb1 profile image
Izb1 in reply to Straddie

Not all gp's are issuing rescue packs now, mine has taken this off for everybody except severe copd patients. I now have to ring the gp if I want antibiotics and have to fight to get two weeks, luckily I havent had many infections in the last few years x

cofdrop-UK profile image
cofdrop-UK in reply to Izb1

Omg that’s boiled my blood. Wtf are you supposed to do at weekends and/or holidays. Sounds like a consultant needs to intervene here. I appreciate they are being sensible with the normally fit and well re abs but these abs are so vital for so many of us and actually quite cruel considering the time it would take for any aCtion taken by Gp.Xx

Izb1 profile image
Izb1 in reply to cofdrop-UK

I have had so many problems since my gp went onto mat leave , I had an argument with the gp pharmacist even getting a script for carbocystine at one point because i hadnt had it for a while, its become a nightmare. I am even more worried as we have had a new hub built near to the shops, I read a while ago they are going to replace gp surgeries. Its seems the world has gone mad x

Izb1 profile image
Izb1

Hi Daisydaff and welcome to the site. I was like you when first diagnosed, left to get on with it with no information. I have learned more on here than from any hospital/doctor. Luckily for me Littlepom replied to my first post and gave me very good information. After a couple of years the hospital discharged me saying there was nothing more they can do for me and I have a pretty useless gp so have learned to recognise when I need meds and have become strong enought to fight for what I need now, its not the way things should be and I do hope that you have better care where you live. Good luck x

cofdrop-UK profile image
cofdrop-UK in reply to Izb1

Omg so you haven’t even got a consultant now. This is unacceptable Izb1. Cx

Izb1 profile image
Izb1 in reply to cofdrop-UK

I know and am powerless to do anything about it x

cofdrop-UK profile image
cofdrop-UK in reply to Izb1

Your not powerless lovely. Please write this on a new thread and let your good friends help you despite your dh gp. I note you have RA too and I just don’t know how any bronchie consultant worth their salt could disCharge you and left you to it. How long ago was that I wonder. need to find a different bronch con and ask as they specialise in the condition you have will they accept a referral. Once they say yes your gp will have no excuse to faff any longer. We are with you.💕💕

Izb1 profile image
Izb1 in reply to cofdrop-UK

Aaw thank you Cof. My rheumy doc has been so good to me and has supported me with my health issues, getting me appointments by referring me herself and even writing to my gp when he didnt want to send me to neurology for this ear/eye/tooth problem I still have, this is draining me at the moment but when its over i fully intend to get a new consultant. Thank you for your support it helps alot x

MoyB profile image
MoyB

Welcome, Daisydaff!

I have Bronchiectasis as well as COPD and asthma.

I would certainly be submitting a sputum sample if green, as you have already done.

The other week, I had an interesting discussion with my consultant about sputum samples and their usefulness. One thing he told me is that they are often returned from the lab with the words, 'Normal flora' which may be interpreted by your surgery as 'Normal' when in fact it simply means that no specific bug was identified. He added that this DOES NOT MEAN that you DON'T have an infection, just that they haven't identified the bug.

He said that a good GP would listen to your chest and hear what you have to say about your symptoms and decide for themselves whether to treat you for an infection or not.

We are all being led to believe that we cannot see a GP face to face anymore. This is not true. In most surgeries, if not all, you have to phone in and are given a phone triage appointment with a GP who will then decide if you need to be seen. On more than one occasion I have then asked the GP to see me face to face so that they can listen to my chest and they have agreed with no problem.

You've already been given excellent advice by Littlepom and you have an advice line number to call, but I would also urge you to call your surgery again and try and get to see your GP. Ask if the sputum results have come back and, if so, what they are. Don't be afraid to take control! If you leave it to your surgery you'll probably not get very far. You really do have to be assertive in these matters. On more than one occasion I've been told by a receptionist that my results are not back only for them to find them 'in a different place on the computer' when I've pushed (politely) for them to look harder.

I remember only too well being in your position early on, when I'd been given virtually no information and was ill with an infection but thought it was par for the course so I didn't bother the doctor and it got much worse! It's important to get any infection treated promptly with 14 days antibiotics (NOT 7 days) in accordance with N.I.C.E. guidelines and people with bronchiectasis quite often need to take prednisolone (a steroid) as well, or sometimes it will be given on its own, without the antibiotic, depending on what the GP hears going on in your chest.

I hope you soon get rid of your green gunk and start to feel better. Don't be afraid to be assertive and proactive when dealing with your surgery. You'll soon become the expert in dealing with your condition and may need to nudge your GP into action now and again.

xx Moy

Lutontown profile image
Lutontown

Have you called your surgery and asked for the result of your sputum sample? If they say it came back normal, I would suggest another go with a sputum sample, because green isn't for go, more likely for danger. I have bi-basal bronchiectasis, and it seems to be managed very well lately, presumably the medications I'm on, doing their job. Carbocisteine, spiolto respimat. Also I take antihistamine from February to October. Early for tree pollen, later months for fungal spores.

Also, make sure your home has no black mould growing anywhere. Could be anywhere where water has leaked in the roof or out of pipes. Since eradicating our black mould, I've not had any chest infections. The two years before that I had loads; 18 in 2017.

Pipswhips profile image
Pipswhips

Sounds like you need to speak to a gp at your surgery it sounds like youve got an infection if your sputum/ mucus is green also see if theres an asthma nurse at the surgery you can speak to

cofdrop-UK profile image
cofdrop-UK

A very warm welcome to you Daisydaff, although I am sorry to hear of your problems. Another lifelong bronch here. You have had some very sound advice from your new friends, so not much to add.

As V1burn sTated we all get used to what colour sputum is normal for us but I would suggest as you are new to the dx of bronchiectasis green would be a red flag and needs attention. The onus seems to be on the patient to follow up on sputum results. So Personally I would either ring as soon as or, better still, if you feel unwell and still bringing up green gunk request a face to face so you can be e examined and/or another sample sent.

Unfortunately there will be some time to first consultation but in the meantime I would ask the name of the consultant you are being referred to. Check them out online to see if they specialise in either of these cf,pcd or bronchiectasis.

Good luck and let us know how you get on.

europeanlunginfo.org/bronch...

Cxx

Hi Daisydaff, hope you are finding all the advice useful. I was diagnosed just over a year ago with Bronch on top of 40yrs of being asthmatic. I had a good Resp consultant, but he could be erratic in seeing me and kept changing his mind on treatments. My GP surgery is not good. In the end I put in a couple of formal written complaints to the Practice Manager which seems to have stirred them into action! I've just taken a sputum sample in this morning as something isn't quite right, they wont issue rescue packs anymore, but a GP has given me a prescription for antibiotics & steroids after a phone chat. Keep battling on!! And don't feel bad about nagging the surgery - believe me it's the only way!

Walkwalkwalk profile image
Walkwalkwalk

Welcome Daisydaf. There has been some very positive advice from people who have similar issues which will be helpful to you. One good mention has been that we do learn what is normal for us as individuals. That just takes time and confidence so at your stage you may want to err on the side of checking out any symptoms that concern you. I have just been helping to produce a book about ILD( inner lung disease) and it’s management from patients, carers and medics. I will post more about it soon.

Take care, my very best wishes.

Grace

HollyBoyd profile image
HollyBoyd

Hi Daisydaff. Welcome to the forum. It looks like you have got a lot of information to digest, all so very useful. I hope you get some answers from your GP very soon. All the best xxx

Morrison10 profile image
Morrison10

I’ve just read all post, very interesting and informative. I’ve lived with bronchiectasis all my life, wasn’t diagnosed until age 31, now 87. I realised many years ago that the delay in starting antibiotics wasn’t good, and have kept own, and written records of which one taken, and why, and result. Some GP are good, as are consultants. Found my consultant by looking on line, had to pay to look at all in area, as realised that one was seeing wasn’t good, very glad I did. Sputum samples are useful but have to be careful told correct result. Have been misled by surgery staff, so now tell my consultant result is available. Haven’t seen GP face to face for over two years, nor my consultant, although hoping to do so soon. My very best wishes to everyone, keep fighting the nasties who enjoy partying in our lungs. Jean x

Patk1 profile image
Patk1

I'd request to put specimen in and meanwhile after that,start antibiotics x

Hello Daisydaff

I am new to this forum but have read the replies to your post and recognise some really good advice and support on here (particularly from Littlepom). I was diagnosed with Bronchiectasis around 16 months ago and have been learning to recognise my own 'early warning signs' for flare ups. I would agree with other comments that it sounds as though you need a course of antibiotics!

When I was first diagnosed (following a CT scan) and referred to a respiratory consultant, I was aware that I would have to wait a few months at least to be offered an appointment. I did some research online and soon found out that breathing exercises are very important in managing the condition. I was in the lucky position that I could afford to pay for two appointments in the private sector with a physiotherapist, who taught me some breathing exercises. This helped me to feel that I could start to help myself whilst waiting for my appointment to see a consultant.

My GP has been helpful if providing me with 'rescue packs' and also Carbocisteine and Salbutamol inhalers.

Best wishes to you, and thank you to people on this forum for your helpful advice.

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