Hi. I don't really know what I am looking for. I am quite new to this and I am having a lot of feelings going on since I've heard I have bronchiectasis. I am sad, mad, scared... This message will be quite emotional for me and I hope it will be okay with you. I need to talk and my family, except my partner, do not understand or know what is going on.
In 2023, I was healthy. In December 2023, I caught pneumonia in both lungs while I was pregnant. I was given antibiotics, but after the treatment I still felt sick. I consulted and was told it was normal to feel sick a few weeks even after. So I waited. I consulted again and was denied a radio since I was pregnant. I was told to give it time. In February 2024, I went to the hospital after a mild fever and they did some radio to find out I had pneumonia in both lungs again. They gave me a new antibiotic and I was left alone again. I still felt sick even after and I consulted again. This Dr sent a request to meet a pulmonologist. I finally saw one and was prescribed Symbicort 200. He suspected I had asthma. He also told me he would like to do a CT scan after I give birth and he told me I would get a call from the hospital in a few months.
Symbicort did help, but I was still coughing a lot of yellow mucous. Then in April 2024, at 4 months pregnant, I started coughing small dots of blood. I was so scared. I thought I was dying. I remember bringing my first child to the daycare, trying to stay calm in front of her. Then going to the hospital. They made me wait because I wasn't bleeding a lot. When I finally met the dr, I coughed a full hand of blood right in front of him. I was crying and telling him I was going to die... This was so intense for me. Their first idea was that I was having a pulmonary embolism. They did a CT scan in the following hour. Then they told me I had pneumonia, again, and small bronchiectasis in both lungs. They didn't explain what it was, their priority was to evaluate the bleeding that was quite intense. I was given iv antibiotics and the next morning they did a bronchoscopy.
I stayed 1 week in the hospital until they found what I had (hemophilus influenza). I coughed blood for almost 2 weeks. It was the scariest moment in my life. I remember the staff talking about me and wondering if I would be transferred to a more specialized hospital since I was pregnant.
After that I didn't get sick until I gave birth in September 2024. Then I was feeling just okay, still coughing with yellow mucous. Hospital didn't call me for the CT scan and I had to ask myself to finally have it on January 2025. I met my pulmonologist and he explained that I have small localized bronchiectasis in both lungs. Probably because of my pneumonias. He recommended a new bronchoscopy to find what bacteria is in there. It happened in February 2025.
Fast forward to this day, results aren't out yet, but they confirmed there is a mycobacterium. They just don't know which one yet. My pulmonologist told me I may start a long-term antibiotic to eliminate it, depending which one it is.
3 days ago I started coughing blood with mucus for the first time since April 2024. I was so shocked and scared. I called my pulmonologist and he prescribed me antibiotics. I met him today and he announced to me that it may happen again, but that I should not panic. This is my new reality.
I can't process this information. And I am so full question, will I die young? Will I see my childs grow up? What will happen next? Is it because of these pneumonias? I am mad. Mad because I wasn't taken seriously, sad because I didn't take care of my health...
I was told if I start those long-term antibiotics I will have to stop breastfeeding. I also had to stop breastfeeding my first when I was sick with my second pneumonia. I am so sad about this.
From what he explained, what I have is localized and won't expand, but I must not fell sick. How is that possible with two child under 3? I am also scared to develop antibiotic resistance if I start taking those everytime I get sick. He prescribed me clavulin to keep in my pharmacy when it happens. But how do I know when I am really sick and not just a small cold? I am always having yellow mucous, don't have fever (except once with my second pneumonia). I am coughing almost everyday. Sometimes there is no mucous and it hurts my throat and other times I have a productive cough. Every day is different.
I still have another test to do for the asthma diagnostic. I was called yesterday to do it, but because I started antibiotics it need to be reported.
I need some guidance, some comforting words... I don't know, I am at lost and I am ashamed of taking it like this. It could be so much worst and I know it. Thanks
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BelleJournee
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l’d just like to welcome you to this very friendly informative forum. I can’t answer questions about bronchiectasis but there will be others who can help. I do know you need a bronch specialist as they are the ones who know what they’re talking about. Good luck to you. Xxxx
My god you have been through so much, I cried just reading what has happened to you and pregnant also. This is positively the best forum you could have come to, but I have copd and I'm sure someone will give you answers and advice here on your situation. I wish you all the best in the world for the future and am sure you will get the help and support you need 😉
Hello and welcome to the forum.youve had a tough 18 mths? And with two babies too. I've bronchiectasis, asthma+ other probs.its gd that it's localised and not widespread. As for infection, u do need an extended course of antibiotics to finally zap it,we do get some nasty bugs that take time to eradicate.even with a mild infection, we bronchiectasis warriors must àlways have a MINIMUM of 14 days antibiotics,more if needed and iv if needed.many of us are on a prophylactic , mainly azithromycin as it also has antiinflammatory effects in lungs.many of us are on a mucolytic to thin mucous eg carbocysteine or nacys.Self care is so important with bronchiectasis- the main thing is on days when u have mucous, give yrself time to get it up prob twice a day - see aluk website for lung clearance eg huffing technique, acbt. I use disposable cups so can see quantity, colour+ consistency.iput tissues in+ dispose of in nappy bags.
It's very important to try to avoid viruses, even colds as they often trigger an exacerbation/ infection.i use viral blockers sprays for nose+ throat × a small air purifier that filters viral+ bacterial particles.
I'll leave it there, it's a lot to take in.u are young± now u have a diagnosis, u can look after self and receive correct treatment.youll b there for Yr children growing up xxxxxx
Thank you ! My pulmonologist gave me a 7-day course of Amoxicillin/clavulanic acid. He didn't tell me about longer treatment for the current infection.He also prepared an antibiotic prescription for me, ready in case of a new infection. He told me not to wait more than 3-4 days after I became ill to avoid a secondary infection.To eliminate phlegm, I've tried several techniques, but the amount is minimal. Instead of it coming out all at once, it takes all day. It comes out in small amounts. It's frustrating. My pulmonologist tells me that I don't have a lot of mucus, but I have just enough to constantly have this need to cough, even if nothing comes out sometimes.
I don't know how I can avoid virus. I have 2 children under 3. My older is always having a running nose. I've been sick once every month since the beginnings of winter. I've had antibiotics for bronchitis in December and February. I think this time it's a sinus infection that lasted 2 weeks and finally went down my throat. I thought it was over until I saw the blood. I'm not used to having to take antibiotics for every respiratory illness. We are constantly told that we can develop resistance.
My pulmonologist told me that once we have the final results of my bronchoscopy, he will either start me on an antibiotic for the inflammation or a long-term course.
I'd ring gp b4 antibiotics run out and explain bronchiectasis guidelines say 14days minimum ea time.im glad he's given u a " rescue pack" for home.lets hope they soon isolate this bug4u and get u well.unfortunately rhinosinusitis often accompanies lung disease - I have steroid nosespray, use twice a day, antihistamine am,montelukast 1pm ish and during pollen season?I take an otc antihistamine+ the air purifier helps.wjm troublesome I clean nose+sinuses with sterimar spray- seasalt spray.everytjing helps.I do produce mucous, less sometimes but giving stuff 15mins twice a day should help reduce coug+ whn infections cleared. Re kiddies viruses - try the viral blockers?, they do help.i use coldzyme throat speay+ vicks rescue nose spray.perhaps 2or3 times a day. It's a shame u have to stop breastfeeding feeding, but necessary. Re lung clearance( advice on aluk website) u would benefit by asking to see respiratory physio. Xxxx
Sounds as though you have been dealt a very poor hand, but try to look to the future. My wife of over 50 years injured her back when she was 1 years old. She didn`t tell her mum she had fallen while climbing up a drainpipe and 2-3 weeks later developed pneumonia, which resulted in collapsed lung. This then developed into bronchiectasis. We used to help at the Cub Scouts and then the Scout Troop, went hiking and camping. Not long after we were married we moved to a house not far from a river and it became apparent that the damp atmosphere was far from ideal. We moved up to the top of one of the hills in Sheffield and her health improved. We eventually moved to France for a better, warmer climate. No problems until about 15 years ago. Chest infections, breathlessness and several doctors treating her for Asthma, and all manner of chest/lung problems. All this despite her telling them all she had bronchiectasis. Some specialists are just plain stubborn, others are simply unaware of the difference.
For the last 5 years or so, she has been taking Azithromycin 3x per week, with not too many infections despite both of us having had Covid twice. She did have a long lasting bacterial infection a few months ago which required a specific antibio, sorry can`t remember the name which had some fairly awful side effects, but did work.
Daily self-help means aiming to do 10,000 steps walking, some of it on an exercise bike if weather not too good. We also play table tennis, the arm movement as well as bending down to pick up the ball gets the mucus moving.
With 2 young kids, then play with them as much as you can, you get the exercise, and hopefully they fall asleep and you can relax.
One thing to note is that treatment in Canada may not be anything like here in France/England. Don`t despair, it does take time to get the treatment regime sorted out. Enjoy your kids and stay positive, you`ll always find support here.
Have a good day, Chris.
Note: if your Pm and the rest of the population can fight the idiot in the White House, with a bit of help you and your family can fight the lung problems.
Welcome to the forum. You've certainly been through a rough time. And pregnancy/ childbirth can play havoc with your hormones without the extra stress of bronchiectasis. Hopefully things will start to get better from now on. Pat's given you a lot of helpful advice. I would just add that a little gadget called an AeroBika might help you cough up the mucus more easily. In Britain we can get them on the NHS, Ask your pulmonologist what he/ she thinks- they can be bought on line. Also don't worry too much if you are put on a permanent antibiotic. Some of us here have been on an ab called Azithromycin for years. 5 years in my case. It's kept me infection free for most of that time. No-one seems concerned about resistance- the good outweighs any possible harm. Good luck- i hope you soon feel more able to enjoy your kiddies.
Welcome!People have said a lot about medical issues already so here's something I hope may make you feel better about one other thing - the possible need to stop breast feeding when you're on the antibiotic.
My daughter is now a healthy 53 yr old and my son is now a healthy 50 yr old! Both were bottle fed as we were encouraged to bottle feed and not breast feed back then. How things change!
Neither of my babies suffered as a result. Bottle feeding became routine and is even easier with modern formulas. My daughter bottle fed her two children who are now aged 12 and 14 and very healthy. They are also academically very bright.
Someone else can feed the baby if you're unwell or need to go to hospital for a few days and believe me, they will not be deprived in any way if the bottle feeding has to become long term.
I'm 74 and have chronic asthma with fixed airways and bronchiectasis. Thanks to taking a long term antibiotic (azithromycin) I have been much, much better in the past three years but I suffered a lot in the year before diagnosis.
I send my best wishes that your pulmanologist gets to the bottom of things and gives you the treatment to make you well again - SOON!
I'm sure you will continue to be worried - who wouldn't be - but try to focus on the things that are going ok for you and try to enjoy being a mum.
77M. Hi, I've had RA related Bronchiectasis on both lower lungs for 8 years now, maybe longer. I used to get bronchitis and pneumonia 3-4 times a year treated with associated antibiotics (I am penicillin allergic), prior to diagnosis of Bronchiectasis. I have remained totally infection free for 5 years since following a specialist pulmonary physio. I regularly use a breathing resistance to stretch the airways followed by lung clearance. I do use Symbicort when I feel inflammation building (my RA gives early warning of inflammation ). I see my physio a couple of times a month, just to make sure I keep doing the exercises. Bronchiectasis is controllable and hopefully it will have a minimal impact on your quality of life.
Welcome to the club, I too was originally diagnosed with asthma, but following a CT scan when in hospital with the dreaded Covid in April 2020 they found the bronchiectasis. I had been suffering from real fruity chest infections 6+ times a year for heaven knows how long. I am now on Azithromycin Mon/Wed/Fri and (touch wood) have not had any chest infections since then. I had to give 3 sputum samples before they proscribed the Az. I am 74 and still get out repairing ancient monuments for the Peak Park. Here am I collecting turves for repairs! Good luck.
You have had some very good replies and personal experiences. BUT at present you are wallowing in a pond of confusion, unreliable treatment, lack of a programme of self management and unnecessary fear.I have had bronch for 73 years, since I was 3. I.have travelled the world and lived in the Middle East where I had my first baby and am still giving it plently. I breast fed my first baby but not the second because I had left Beirut a few weeks before his birth due to the civil war and was too tired. Both babies were fine and now in their 50s.
The most important thing is that you get a bronchiectasis specialist. They have the training and experience plus physiotherapists to help you clear your lungs in one determined session rather than suffering the mucus coming up at its own pace during the day resulting in irritating and debilitating coughing. It also sounds as though you have an ongoing exacerbation of infection which has not been treated properly. General pulmonologists and family doctors simply do not know enough about this complex condition. I believe that you are in Canada and they do have excellent bronch specialists there.
The antibiotics which you have been given (amoxyll) are use less for bronch and this is where you need the help of a specialist. Do find one and get a referral however the Canadian system works.
You need to be on top of your bronch. It needs to become just another routine in your day and you need the energy to enjoy your babies. You have a lot of support from the lovely people on here and can see that it is possible to live a happy productive life and bring up your children once you get the management under control.
Thank you ! I didn't know there were people more specialized than a pulmonologist for this condition. What are they called?
My pulmonologist told me he's waiting for the results of the bronchoscopy before giving me another antibiotic. He want to know what bacteria I have, and he doesn't want to prescribe me azithromycin as long as he doesn't know if we're embarking on long-term treatment. As for now, all typical bacteria are negative, but we know there is a atypical mycobacteria.
I will ask him more about the antibiotics he gave me and why it's not 14 days.
I have never had a bronchoscopy and would never allow them to do that to me. Genuine bronch specialists know that it is possible to find the relevant bacteria in the mucus that you cough up. Equally these tests, both from bronchoscopies and mucus alone tend to be notoriously unreliable and often show clear when it is obvious that the patient is unwell. To treat by antibiotic alone is only tackling the tip of the iceburg because the lungs need to be emptied every day of the warm wet environment in which they like to breed.Also as others have said 14 days for an antibiotic in bronch is stipulated in the bronch guidelines. Azithromycin is not the panacea that many think it is but it is a useful drug and helps to reduce the inflammation that encourages bacteria to grow. Your results may show non tubercular mycobacteria which requires its own treatment. I hope that the tests do show what is in there. Then your doc has choices. At least 14 days of a more relevant antibiotic, IV antibiotic to knock the infection on the head followed by long term inhaled antibiotic to keep the numbers down or azithromycin as a prophylactic after another antibiotic has cleared the infection. If your pulmonologist seems to be familiar with these routes he is probably worth sticking with. If not, look on the website of your nearest big teaching hospital for a pulmonologist who specialises in bronch. And remember at least 50% of keeping the gunk monster under control is down to you. Do let us know how you go on.
Thank you. I am in a medium size hospital with a full pulmonary department. I honestly don't know how much my pulmonologist knows about bronchiectasis, but I thought he knew what he was talking about. I wasn't supposed to see him until May, but when I started coughing blood and called in panic, he gave me an appointment 2 days later. I wondered why he wanted to see me, but it was mostly to reassure me. He drawn a picture of lungs on his desk and explained to me why I was bleeding, how it happens. He listened to all my questions, but didn't want to do anything new in my treatment until we get the last results. He told me microbiologists will work on my file and try to find a way so I don't stop breastfeeding. But if needed I will stop. I feel like I am well followed, for now.
I will wait to see what are the next steps. I also have this asthma test to do to confirm if I have it or not. If I am not satisfied after I get all my results and the treatment, I will ask where I can find a specialist.
But I'll ask him on monday why he didn't give me 14 days of antibiotic.
Also, I already did sputum tests in the past, but they were clear. I wonder if it's why he wanted to do a bronchoscopy?
I'm 83 now, and have been living with bi-basal bronchiectasis since 2014, which is when I had a long infection, March into November, with a bug Staphylloccus Aureus. My surgery was in complete disarray at the time for a number of reasons. Oral antibiotics hardly touched the bug, until "my" doctor came back from a hip operation, and he got me to see the lung specialist in the hospital. he arranged a CT scan, which showed I now had the bronch. He arranged an intravenous AB, which knocked the bug out. One week later I had another infection which was sorted with an oral AB. So, I do blame my surgery, as I believe that long exposure to that bacterium, was the cause of the bronch.
I've had numerous chest infections since 2012. In 2017, I kept a diary, and counted 18 infections in those 12 months. In Apr 2018, we found Black Mould in our bathroom, covering 70% of the floor's surface. The floor boarding was changed, and since then NO chest infections, other than a bout of pneumonia and pleurisy in Nov 2019. We had moved house in Aug 2013, and I think that maybe, that our old home may have had mould as well. I had 6 infections in 2012, and the lady of the family who bought that house, died in about 2017 of a fungal infection of the lungs.
Anyway, although I've got the bronch. I am living with it ok. On a number of medication, which I'm sure help. So, I think you must be seen by a specialist in lung problems, to be correctly diagnosed, and put on the RIGHT medication.
I also have heart failure, which I think may have been caused by that pneumonia and pleurisy stint.
Can anyone explain to me how a cough with blood evolve and end ? I woke up this morning and I coughed up small clots of dark blood. My pulmonologist warned me this would happen, but it still shakes me. When I saw him yesterday I showed him pictures and he told me the quantities were small and to not worries, but the sight of it is still hard.
I'm on day 4 of my cough with blood...I feel like that the bleeding has resumed slightly following the expulsion of the clots. Yesterday I only had red-tinged mucus, so seeing that when I woke up was discouraging. I think the antibiotic is working because I almost didn't cough yesterday and I have a lot less of mucous. I'm at day 3 of antibiotic.
When I first coughed up blood- not very much- I thought I was doomed like the Brontes or John Keats. Silly me. I learnt on this site that coughing can damage the airways in the lungs, hence the blood, but that the lungs will heal. Your case sounds a lot worse than mine, but it sounds as if your consultant feels it is under control. I also had haemophilus, but antibiotics and regular lung exercise seem to have seen the nasty thing off. Fingers crossed for you. 🤞🤞🤞
Oh my. This is so scary. I also thought about movies where people cough blood and die the first time 🫠.The memory is so vivid. Me in front of the GP in the hospital, telling him I was coughing small dots of blood since waking up and then while talking the urge to suddenly cough a full tablespoon of blood in front of him 1, 2, 3 times... I was thinking this was the end... He was so calm and told me I was at the best place it could have happened ever. That was true 🥴
Honestly this time it is much less intense than the first time. However, when I saw the blood 4 days ago, I saw myself 1 year ago and panicked. Luckily it's under control, but I feel like I'm traumatized.
My heart goes out to you 💔....my god you have been through a hell of a hard time...I can't believe what you have been through being pregnant both times as well..I have copd but got epilepsy when pregnant with my 1st child. Please keep looking at this wonderful site..I'm positive someone will be able to give you some advice/ help/ guidance.
Hope everything gets better and better for you ASAP ✨️ ❤️. Gnasher the dog 🐕 ❤️
hi and welcome BelleJournee. I have found that doxycycline anti biotic is best for my bronchiectasis flare ups. I can be coughing for months. When I was pregnant with my last child I was more or less permanently on anti biotics and coughed very violently all the way through. Swizzy has a wealth of experience with bronchiectasis and has great advice. Don’t over worry. Xx
Thank you ! I can't wait to try something new in hope it will help me. Still waiting for the bronchoscopy results before giving me a personalized treatment. My pulmonologist do not want to give me anything else before he knows what I have in my lungs. The wait is driving me crazy. It has been 6 weeks. He told me mycobacteria are really slow. There is one, we just don't know which one it is.
Hi, just to say 👋 hello and welcome to this lung patient forum. You've really been through the mill at a very vulnerable time indeed. Several different lung diseases here as you're discovering. I believe the whole correct term for bronch. is Non Cystic Fibrosis Bronchiectasis (anyone please correct me if I'm wrong) and being diagnosed with any lung disease leads you to a massive learning curve at any age.
Our medical system is different here and it seems we have different term/words ie bronch = bronchiectasis, GP surgery is a place we go to when unwell to see a GP - a qualified doctor who know a little about many things ie a General Practitioner. A qualified specialist in a hospital would be called a Pulmonary Consultant (pulminologist) once s/he is qualified and becomes Mr again. Within specialisms medics can then chose to specialise in one particular disease in their area - hence a bronchiectasis specialist. An ordinary lung consultant will probably know a little about several lung issues. Most of our GPS know next to nothing about bronchiectasis or anythingmore than mainstream asthma. When members here mention a physio it would be a respiratory physiotherapist who can teach the draining/clearing methods (some techniques can be found on line or youtube too). Why it's so vital to expel it is because any mucus lingering in lungs creates the perfect warm wet environment for the bugs to party and multiply - and there are lots of different ones there too. You've already had a nasty in Heamophilus Influenzae (this is one which can colonise lungs and needing specialist antibiotics to control it & keep the levels low, sometimes given by IV/intravenously).
Roll on the arrival of your aerobika! I hope it helps, drinking plenty of fluids helps to in keeping mucus moist. Quite few patients here take a mucolytic called Carbocysteine in UK (might be Singulair in America). It helps too. Unfortunately antibiotics become a necessary evil to preserve our lungs for life and preventing further damage. I've had pneumonia 5 times and by golly it takes ages to completely recover from - there is a vaccination against pneumonia, ask for it ASAP if you've stopped breastfeeding. And ask about the prophylactic antibiotics to help uou out of tgd present situation. I take lower dose 250mgs Azithromycin on Mon Wed Fri from November to April and its been a game changer.
As for avoiding bugs/viruses yes, so difficult with little ones but go back to the pandemic hygiene like carrying hand sanitiser, washing hands a lot. In England babies are prescribed vitamin D drops & multivitamins. My kids give their little ones plenty of fresh fruit rich in vitamin C - vital in my opinion in keeping their immune systems thriving.
Wishing you the very best recovery.
(Soz to waffle on, I've CFS. Z result of the pneumonia and dozens of long lung infections).
Thank you for the explanation! I have a GP (he's my family doctor). He is the one who referred me to a lung specialist (pulmonologist). He seems to know well what is bronchiectasis, but I'm not sure if he is a specialist.
What I know is when I ask him what is going on and how things are working, he takes the time to answer and even show me pictures. He showed me my CT scan and explained where the bronch were. He even draw on a paper the lungs to show me why and how I was bleeding.
As for hemophilus influenza, I was sick in April 2024 with it and fortunately it didn't show up in the sample they took under the bronchoscopy in Feb 2025. There was nothing else except the mycobacteria.
I hope I'll never had pneumonia again. I had 3 in 5 months and I don't even know how I did it while pregnant. I am 7 months postpartum now and I am still tired, but it goes better day after day.
Autumn 2024 I took the flu and pneumonia vaccine per my GP recommendation.
I can't wait to try another antibiotic. In Dec 2024 I was given azythromycin for an infection and it was the first time in a year I didn't have yellow phlegm. It was clear. Sadly my pulmonologist doesn't want to prescribe it gain until we have the results because it may create resistance just before we start a possible long-term antibiotic.
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