Hello, I'm new on this particular topic but not new to this site (if that makes sense) anyway, I've been suffering from what now (seems) to be bronchiectasis. I've noticed there's a lot of you on here with the same thing and thought who else best to ask for advice but you guys.
Suffered for a few years now with reoccurring chest infections (or so they thought) It always starts the same....first I loose my voice, very hoarse, then I start to cough up very very nasty green phlegm, pains in shoulders and back (presumably lung pain) sweating profusely, extreme weakness and unable to walk very much, and this can go on for as long as 8 months, doctors just keep throwing antibiotics at me (not literally)
Then one clever GP made me do a sputum test and it came back Strep Pneumoniae positive, so I thought I was getting somewhere, but no, no one questioned why a 39 year old non smoker was getting these problems and after 8 months of antibiotics/steriods it eventually went (still exhausted though) in May this year.....BUT I knew it would be back around September, I just knew it, and it came back on the 1st of October full throttle, so I've been poorly 6 days so far.
A GP gave me amox antibiotics (probably a waste of time) but I'm taking them obviously, but if it wasn't for me having a turn for the worse last night and having a trip to the hospital, then THIS wouldn't have happened......I saw the hospital emergency doctor whom I happen to have seen before for the same at Xmas, she remembered me and couldn't believe I was still suffering/hadn't been referred to a chest specialst/hadn't been asked for a septum sample etc.
Anyway she did a thorough exam/listened to my rattling chest and asked how I'd managed to pick up Strep Pneumoniae last time (I've no idea) and then said "I think it's Bronchiectasis....I'm writing to your GP surgery now to get you referred to a chest specialist right away and to tell them I want a sputum sample and a follow up appointment" she also said she wanted to help me (imagine how nice that felt)
So, that's where I'm at, haven't got a diagnosis but think I'm pretty near now, I'm obviously scared like all of you will have been/are, but because I'm so poorly lately I already knew I had something 'not nice' so it's not a shock.
Thank you very much for taking the time to read my rambellings! Any advice, words of wisdom would be greatly appreciated. Kind regards Candi
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Well thank goodness for a very proactive doc at the hospital. Sounds like you have been short changed for a while by your GP.
Check out consultants at your local hospital or in a large city you have access to. You will need a respiratory consultant with a special interest in bronchiectasis. You might want to ask your gp to refer you to the con of your choice.
You will need ct scan for a definitive diagnosis.
Strep p is horrid but is easier to get rid of as it is a gram positive bacteria and if this infection is strep p again, amox may well do the trick.
If you do have bronchiectasis, unless you also have asthma or copd, steroids are not used a great deal, although they are on occasions.
Let us know when you get your appointment, or if there is anything specific you need to know, please don't hesitate to post - there will usually be smeone around who can help.
Hoping you get some answers soon and know exactly what you are dealing with and also much better treatment.
Thanks so much for that cofdrop, and Appologies for the delayed response also. Really is great to hear someone with real knowledge of this subject. I will be sure to report back with the latest. Thanks very much again, really appreciated!!
Thanks so much for that Jenny, and Appologies for the late response, so seems as though it's normal for this to go un diagnosed for a long time then sadly. How exactly did you get your diagnoses if you don't mind me asking? Was it the CT scans? They only ever give me X-rays and the most that's ever shown was slight scarring, but that was probably over ten years ago. Thanks once again, really appreciate your reply!!
Yes sadly you can only get diagnosed through a CT scan.
Symptoms often go undiagnosed for some time by reading on here its not just me!
I have asthma since childhood,started being ill 10 years ago..i then had rheumatic fever..my heart problem started 3 years ago along with bronchiectasis.
Get to a specialised hospital if diagnosed,i have been well cared for since i moved hospitals and consultants.
Sounds a similar story to mine, I too have always had asthma and my problems seemed to start around ten years ago also, unlike you, my heart seems to be the only part of me without an issue, sorry to hear you have that to deal with also and rheumatic fever must be awful, it must be difficult to say the least.
Not sure the age of people in theses posts but I was born 1977 and my mother got caught up in the whole whooping cough vaccine scare debate and took the tough choice to not give me it as a baby (her own GP said he certainly would not be giving his own children it!) and......I got whooping cough (my poor mum!) so this lung issue could have been going on years unnoticed.
Had (like you) a lot of mystery infections, sepsis and just bacterial infections that a person under 80 + would normally not be susceptible too.
make sure you find out who specializes in bronciectasis is in your area . GPs are limited in there knowledge of this problem and tend to treat you under the umbrella of copd. when the treatment you need is quite different. Dot be afraid to be proactive in getting the right treatment . Even if it means paying to see the right person . My Gp had been treating me for asthma for 15 year before i took the bull by the horns .its manageable once you know for sure what your dealing with. some times you have to put your Bodiceas hat on before people take notice good luck
Thanks so much for your advice chip 1, and Appologies for the late response. Same as you, I'm an asthmatic, I do find the GPs I have seen do not appear to have a clue about any of my symptoms. And yes, your right, you do need to get your Bodicea hat on, which is hard when your too exhausted for battle, but if I don't do it, no one else will. Thanks again, appreciate your advice!
It’s great to be able to read about others with similar pathologies .
I had pneumonia on both lungs at ten years old My doctor at hospital told my parents that I would not live
I have never smoked- my life has been my work
I began having ongoing cough in my sixties After a while was diagnosed with mild Bronchiectasis.I believe my very active life of Physio rehab Exercise and dance teaching Kept my lungs going !
Now after a few months of being severely breathless -I have fast aggressive Pulmonary Fibrosis. My prognosis is not good , somehow I knew that my time is very limited, now confirmed at hospital by my consultant
Now time to “put my house in order “ so much to do in a short time !
Thanks so much for your reply Grace Olive and Appologies for the late response.
I am so so sorry to hear of your many problems and latest news, genuinely felt awful reading that, sounds like you've battled on so far in your own way and wlll continue to do so regardless of what life's throwing at you, stay strong and open minded, sending my best wishes and thanks for your response, your not on your own!
I’m glad you’re getting help: ask your GP for a CT scan. Tell him (or her) to get you one and to organise a spirometry test. Tell your GP s/he needs now to be very proactive because every chest infection you have may cause irreversible damage to your lungs. Tell him/her they now need to look after you. Then find a new GP. I think it’s outrageous that people have to go through what you have been through!
Thanks so much for your reply Ramy22 and Appologies for the late response. Your right, I do need to start telling them what to do because clearly, it's not working the other way around! I will ask for a spirometry test, good idea, haven't had on in years, thanks again for your advice!
You are very welcome .... it just makes me so angry when people don’t do their jobs! I am very lucky and have a super GP and I think that everyone should have one! You tell him!
The very best way to get a diagnosis is a high resolution CT scan. An HRCT without contrast. Bronchiectasis can be seen clearly then.
Needless to say, that was the way mine was found despite having had two previous CT scans with contrast. Good luck. You may need a low dose antibiotic as a maintenance dose.
Thank you Jacmidlands! sorry, you'll have to explain the 'with contrast without contrast' too me, I presume you went un diagnosed too long by the sounds of it then? Also, 'maintainence dose' I'm not familiar with either.....(think you should have a word with my GP for me) 😄
For some CT scans you are injected with a type of dye, which isn't as bad as it sounds, this gives the consultant more information. In my case there was a query about possible lung cancer which turned out to be ABPA.
My consultant then requested a High Resoltion CT scan, no dye required, and this is even better at diagnosing bronchiectasis. This could have been caused by the ABPA (google it if you don't know what it is or search in this website!!) or I could have had it for years caused by childhood infections etc.
Some people on here are taking a constant low dose antibiotic because bronchiectasis makes you more vulnerable to chest infections.
Not sure if this has already been said but it's essential that you are referred to a respiratory consultant, preferably one who knows about bronchiectasis.
Thanks very much for your reply Jacmidlands, sounds like you've been through it, I thank fully have now been referred to a chest/lung specialist, so will hopefully be getting the CT scan, thanks for explaining everything, just awaiting a date. I do know what ABPA is because I queried it with a GP last year, they didn't seem to know much, but will take it up with the specialists. I think I'm going to be one of those people on antibiotics for a period of time, I was for approx 9 months last/this year. Thanks again for your valuable info!
Reading through all these replies it’s shocking how long it has taken for diagnosis! I had to beg my Dr for 4 years, knowing that it’s not normal to go from fit and healthy to breathless and constantly coughing in a space of 6weeks! I was always having to reassure people I wasn’t contagious!!
That sounds very common lealee, it's sad isn't it, but understandable in the current NHS state, I've been battling for about the same time as you to get a GP to take it seriously, I can only hope I'm near a diagnosis now (not that any of us want to be ill, but know we are and need a diagnosis so we get the correct treatment) I too always feel contagious, it's not pleasant is it!
I’m glad I finally know what’s wrong with me but it’s scary learning about bronch. I hope you get diagnosed soon, at least then you can start the correct treatment. As soon as I got diagnosed the DR changed my inhalers and that alone made so much difference because although the inhalers work fine for my asthma the particles are too big for my bronch!
Sorry for taking so long to respond Lealee....what you said there sounds intriguing (about the inhaler) I've never got on with the purple disk one and my asthma is out of control, nurse is considering changing it, out of interest, what do you take if you don't mind? And as for feeling scared, I'm genuinely quite terrified, however, myself and the GPs are already treating it as Bronchiectasis but I'm yet to have the CT scan to confirm or rule out. One thing is we are certainly not alone are we!
My specialist told me that the particles in seretide (purple disc) are too big for asthma suffers with bronc so it doesn’t work, I’m on fostair now and my asthma is much better. Physio was scary but more because I’m 36 and the other people in the class were older than my mum, some had oxygen.
I’m scared that That could be me. I’m struggling excepting this condition.
Firstly I'm glad you've said that about Seretide inhaler, lately I've felt as though it is agrivating rather than helping, so I'm now inclined to get the nurse to try me on a different one, thanks!
As for the fear thing, I feel the same, I'm abit older, literally just turned 40, I shouldnt be experiencing this now, it's not as though I'm 90.
Also, in my experience, the younger you are, especially if you don't 'look' poorly for the majority of the time (and are good at hiding it) if you've always been an active healthy person, the more people have a hard time believing just what your body is going through, most my friends and family aren't really grasping what Bronch is.
As for your physio class (which I'll be no doubt going too) were they all Bronch sufferers or do you think they mixed in the COPD paitients too?
Im also really struggling to come to terms with all this, very scared, but ironically, the only comfort is the age thing, I've got off to a better start than if I was elderly, you've got an even better head start, more chance of you ruling the condition, than the condition ruling you, also....the medical world is moving very fast and you've got years to give it a good arse kicking! 😆
My peak flow on seretide was a max of 350 (a good day) a month after being on fostair I hit 490 which is amazing 😊
It’s true, being young I hide it when I struggle and I honestly feel like my family and even my boyfriend don’t understand what I’m going through. My sister in le is always bringing my niece around with colds etc even though the last cold I had I ended up in hospital. It’s like they don’t take it seriously.
There were a few copd patients in the physio, the nurse said that bronch is like non smokers copd. My mum has copd and struggles with getting upstairs, I’m terrified of being like that.
I’m really glad that I’ve been diagnosed but now I’m worried about how this will effect my life and my long term choices.
Have you been offered anyone to talk to about dealing with this condition being so young? On the plus side physio actually makes you feel really young 😊
I hope science comes up with some way of controlling this condition x
Hi again Lealee, sorry for the delayed response, been so poorly (no surprise there considering the site were on!)
I think your absolutely right about Seretide! my peak flow is never over 350.
I totally sympathise with about people not really understanding it and bringing little ones round full of cold, its dangerous for you!
Seen as your much further ahead than me, would you mind if I asked what type of 'treatment' you are getting, I know its limited in what doctors can give us but I'm interested to know if your ever on antibiotics long term? I just need hope really because (as you well know) its so tiring when you have an infection for months, I'm at the stage where one pack of antibiotics runs out, 5 days later infections back, I wait for a doctors appointment (by that time I'm really bad) they put me on another course of antibiotics....and the pattern repeats for months. And how far in your diagnosis are you and how are you feeling more importantly!? (P.S if you've already told me any of this before, I apologise!) x
I have recently started lung physio, it’s to teach me how to clear my lungs safely without causing damage. She also gave advice like keeping hydrated to keep the lungs moist.
My mucus is really thick so I struggle to clear it so the specialist put me on Mucodyne (think it’s also called carbocsteine?). After about a month it’s a lot easier to clear my lungs. They changed my seretide to fostair which helped with my asthma. I’ve been on montelukast since before diagnosis which helped.
Also I have a ‘rescue pack’ at home with steroids and 14 days of antibiotics. As soon as I notice the symptoms of a chest infection I start the pack and let my dr know and they give me a new pack. The specialist gave me a mucus ‘collection’ pot and said I had to give it to the dr so they can chart what bacteria is causing the infection.
My specialist has been great.
Is your Dr giving you 2 weeks of antibiotics? With bronch it takes longer for us to fight of an infection and recover.
I was diagnosed this summer and shockingly I have only had one mild infection, normally I have a lot more. I think better understanding of infections and bronch and the change in my inhaler with the addition meds’ has helped massively. It sucks taking so many pills every day but I feel better than I have in a long time. X
You've actually given me hope reading that thank you, thank goodness you've got a good specialist as well, that's half the battle!
Regarding antibiotics, GPs usually mess about with a weeks worth, hense why I'm in this viscous circle, to be fair though, one gp did prescribed me two weeks of Phenoxymethlylpenecillin but in the first few days I thought they weren't working, then its like my body was rejecting them, being sick and obviously still dealing with the original chest infection,been so poorly and now after waiting two days to see a gp I'm on Doxycycline....but only a weeks worth, so you know what will happen don't you!
As for doing samples, I've only done 3, first showed Strep Pneumoniae, 2nd was 'normal' still waiting for the third.
I can appreciate just how you must have felt on diagnosis, I know its scary, Im just about absorbing everything now and its hard, but you sound pretty inspiring, you are dealing with it and you've def helped me, if your lucky enough to get a good specialist (as you have) then it sounds like that's been a turning point and you are in alot better control of it now than previously, I think your braver than you think perhaps 😊
I’m glad that I’ve given you hope 😊 we have to live with Bronch and we know our bodies way more than Drs.
My GP is pants so when I go I tell him what the specialist suggest and tell them what I want them to do. They tried giving me a weeks worth of antibiotics in the rescue pack in the beginning so I told them that people with bronch need 10-14 days worth because we struggle with infections and they changed it. I find that if I go to see the dr informed he doesn’t argue.
You need to tell your dr that you need a rescue pack at home, you know when you have an infection, with bronch we need antibiotics straight away and can’t wait for an app.
I actually got a walk in app about 6 weeks ago, I told the receptionist I have bronch and have been breathless and got seen straight away! Usually it would be 2-3 hour wait!
We have to deal with this condition so we need to take control especially with GPs because they don’t have a clue!
So sorry Lealee! Rubbish at replying (poorly again) no surprise there! I'm going to the docs again tomorrow, need more antibiotics, I'm definitely going to 'tell' her that I need a rescue pack at home, thanks for the tip.
I was informed that my last 2 sputum samples were normal when I rang for the results, then when I went to get my last antibiotics prescribed the doctor said my sputum samples show fungal infection (which they treated as basic oral thrush) and Haemophilious influenzaie, I've looked this up and don't seem to think this is classed as 'normal' is it!? do you happen to know if the latter is a bad bacteria?? If so, why are my results coming back as 'normal'!? Don't suppose you remember which bacteria you 'grow' 😆 Sorry, it's such a bizarre conversation I know, but I just need a comparison.
Hope your coping lately? How have you been feeling this last couple of week? X
The rescue pack is a massive help, I still struggle sometimes knowing if I have an infection coming on.
I think I have another bout of pluresy but no GP appointment til December! Walk in it’ll have to be. So I’m struggling my day to day activities in pain at the moment. The problem with this time of year is people that don’t have lung disease cough without covering there mouths and spread their germs. Unfortunately for us a cold never stays as a cold 😐
I’m not sure about bacteria, since diagnosis I haven’t had a bad infection til now. Not sure if it’s relevant but I always get yeast infections when I take amoxicillin...
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