I think I am on the verge of being diagnosed with bronchiectasis after at least 4 years struggling with it and being told it’s just infections and asthma.
A chest x-ray showed ‘subtle changes in lung density’ and that it looked like scar tissue or a partially collapsed lung.
I am struggling with, seemingly, the main symptoms of bronchiectasis and life is becoming pretty miserable. I worry it’s something even more serious, but the doctor doesn’t seem to think so ( he does think it’s possibly bronchiectasis.)
I have asthma and also anxiety and depression and I am so scared by the thought of having this illness and how I’ve struggled for so long with all of the symptoms for so long, had 4 chest x-rays and it’s only now being dealt with because I am now not taking no for an answer.
I’m sorry. I’m ranting, but I’m not sure how to approach this, look after my little boy and not worry about the future.
I keep getting palpitations all of the time and it makes me feel so breathless. Walking outside seems to help a lot but I am so bunged up with phlegm, it’s driving me mad. I feel so unwell all of the time. I need to lose weight too.
I also have a hiatus hernia, so I wonder if this is a contributing factor.
Does anyone have any advice/similar circumstances? It’s all too much at the moment, isn’t it?
Thanks - Victoria.
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Hi Victoria. There are lots of lovely and very experienced people with bronchiectasis on this forum who will be along to reassure you and give you solid advice before long, some of whom have lived full lives with the condition for several decades. I’m actually a dad to a young teen with cystic fibrosis, which often causes bronchiectasis as part of the condition (including for my daughter), so I know the drugs and principles, but treatment for non-cf bronchiectasis and cf can be a little bit different. What I can tell you with some certainty, is that getting diagnosed is a big positive rather than any kind of negative, because you will at least start to get the right treatment and that will make a huge difference. The treatment you get for a normal chest infection is not the treatment needed when you have bronch, and will be part of the reason that you’ve not been well for so long.
Anyway, I’ll leave you to the actual experts, but just wanted to welcome you and say hi. You’ll find that this is a really great forum, and there’s no such thing as a silly question, other than the one you never asked!
Hello Victoria and a very warm welcome to you, although sorry you are feeling so awful.
The only way you will have a correct diagnosis, certainly to diagnose bronchiectasis, is to have a scan. That should be the next step. Your GP or if you have a consultant for your asthma, they should arrange it.
There are quite a few on here who have bronchiectasis, and some, me included, have had it lifelong and have worked, brought up children and done the normal stuff, whist putting the maintenance in.
If you are diagnosed with bronchiectasis, we will all do our best to point you in the right direction with information and support but you need to push for a scan to get a correct diagnosis.
Please let us know how you get on and stay in touch.
Thank you so much. I think that is the next step (a scan that is.) I hope it can happen relatively soon as I need some sort of answer... This reassurance is good to hear. I hope it’s been ok for you having this during the pandemic. I had my first jab on Monday and hoping it’s the start of the end. X
Keep positive, it took me several years to be diagnosed with bronchiectasis, you should definitely be referred to a consultant, I pushed for this, once all the tests were done they tweaked my asthma meds and I have azithromycin antibiotic 3 times a week now. The contrast is amazing, and it's under control. Good luck
Hi Victoria I have bronchiectasis and know how worried I was about dealing with it in the beginning but it is a management process that needs clearance techniques to clear the phlegm every day and some medications to keep me on track when flare ups occur ,it can take some getting used to but not so scary that you cannot maintain a normal life. I do hope you get the help you need soon to answer your questions about it, good luck to you.
I don't have much to add to the excellent advice of the others. I have had bronch all of my life. I am 70 now and have also had a full life. When you have the right diagnosis you will learn how to manage it and will be living with it, not suffering from it. Be proactive and look for a bronch specialist in your area. Only they have the training and experience to deal with it properly. General respiratory consultants do not. They are usually at big teaching hospitals. Take the name to your GP and insist on a referral. Don't take no for an answer. Once you know what you are dealing with we are here to support you with the day to day management. Welcome to this very supportive site.
I have bronchiectasis,was diagnosed with a scan and broncos copy after a year of constant infections and then coughing up quite a lot of blood. That was many years ago and I am 86 now. Finding life difficult, short of breath but struggling o n.
Hi Victoria. Half the battle is getting a diagnosis. A CT scan is required as has been said...There is treatment to alleviate symptoms & get rid of the constant phlegm & lots of advice on here. Take care! Xx
2 years ago I never heard of bronchiectasis only when I had ct for abpa they found it mild bronchiectasis because I have severe asthma I thought it was just asthma but its all 3 now if you have bronchiectasis just keep your chest clear I use flutter and nebs twice a day
Hi and welcome. I too have bronchiectasis and asthma along with ulcerative colitis. I am 66. Bronchiectasis needs the right meds fro you . It took me a while to get sorted but at the moment there is no further damage to my lung from 14 years ago. I do get tired but I am an active grandma x
Hi Victoria. I'm also on the verge of being diagnosed. I've dreaded being told that since my chest infections started being almost constant and I worried that it was bronchiectasis. Its been a long road to almost get this diagnosis. Its now looking like i have common variable immune deficiency which can cause bronchiectasis.
As soon as they said it looks like i have the beginning on bronchiectasis I went to see a respiratory physio and I've felt so much better since. Shes really reassured me and given me techniques and advice which has really helped. After years of not knowing what was going on I am finally getting answers and the right treatment so I can start feeling better.
It is hard knowing there's no cure but its good to get on the right path.
I have 2 little girls and I get very anxious too but we will be fine. Not knowing whats wrong gives more chance of being stuck in the infection/lung damage cycle but now you know you can prevent the infections with the right help.
Feel free to PM if you want to keep in touch on our journeys to diagnosis!
Hi Victoria , I’m afraid I don’t have much knowledge of your ( possible ) condition I can only say that I agree with other posts - push for a definite diagnosis and then you can learn to manage it and get on with your life . What I would say is that you say , not surprisingly , that you are depressed and anxious , that you feel better when walking outside and that you need to lose weight so my advice to you would be until you get a diagnosis take control of what you can - I have a fee app on my phone that monitors how far and how brisk my walks are , the idea being to aim for 10 minutes brisk for starters . It’s great to be able to see your progress and it definitely aids weight loss and makes me feel good . Determine to be positive and know that you can deal with this has many others do . Get out in nature if you can, if you have a garden get stuck into it ( another great weight loss aid ) Take control for your sake and your child’s and at the end of a great day relax in a nice warm bath or curl up with a good book ( no chocolate 😂) Remember you have loads of support on here , good luck xxx
I don't know much about post nasal drip, but anything thick and horrible that's in your lungs needs to be got out. The BLF have posted an article on the Active Cycle of Breathing, which is one of the things I learnt at Pulmonary Rehab. xxx
Welcome Victoria and, as you've probably already guessed, you're not alone!
I was initially diagnosed with COPD and late-onset asthma about 4 years ago, but last year I was also given a bronchiectasis diagnosis. These diagnoses seem awfully fluid, but as long as they are used to get the right treatment, then it really doesn't matter what the diagnosis is (it's a means to an end, not an end in itself).
One thing I would say, from what I have been told by a consultant (though I dare say others might disagree) is that poorly controlled asthma can damage the lungs, though the result might be quite minor and non-progressive. I obviously had asthma for years without noticing it, and that might have damaged my lungs, though it appears not to get any worse. Given your asthma background, I would be tempted to ask whether enhancing treatment for that might reduce the risk of further lung damage (if, indeed, that is the case).
The mucous is a real nuisance, and I sympathise as I get it constantly. Fortunately, mine is quite thin - thicker mucous is normally treated with Carbocysteine and the "Huff" technique to clear it from the lungs. Montelucast is often given to asthma sufferers for mucous problems, though I use N-acetyl cysteine, which is available from health shops.
Although it's easier said than done, you should try not to worry about a diagnosis, because it is better to have one and get the condition treated, than not to have one and suffer in silence. Hope you find an answer soon, and stay as positive as you can in the meantime.
Hi and welcome to the group. I have bronchiectasis, asthma and emphysema. Diagnosed 4 years ago after suffering respiratory failure and ending up on a mechanical ventilator. I was dragged to pulmonary rehab and now love yoga and pilates. I miss my classes but do what I can at home. I don't have a bronch specialist. I have inhalers and a rescue pack which I haven't touched for ages. Yes I cough- a lot , and am short of breath but, with the help of family and a lot of giving myself a talking to, I am living my best life. Once you get over the initial shock, make some changes to your life (I was an actor now I have various hobbies) you will too. X
Hello, and welcome! I have Bronchiectasis and also a hiatus hernia. The hernia can certainly contribute to Bronchiectasis if you suffer with acid reflux as this can damage your lungs (although not in all cases - my hernia is very large - yours may not be). I take Omeprazole twice a day for the reflux and it makes a great difference.
Others have said, you really need a CT scan to diagnose Bronchiectasis. In my case, when I was really ill, the scan only showed up borderline Bronch - in fact the radiologist didn't think I had it. My wonderful consultant disagreed with the findings and said that he was certain I had it based on what I was telling him about my symptoms. Since then, another CT scan has shown it for certain, so if the medics really think you have it, but the scan doesn't confirm it, accept what the medics say. Fortunately, thanks to my consultant, I have had the correct treatment since his initial diagnosis which has included always having 2 weeks of antibiotics to treat chest infections (1 week is not enough for bronchs).
If you do have it, advice on chest clearing techniques will help you no end and if, and when, pulmonary rehab is available, that would help you too.
If you don't have it, I hope they soon get to the bottom of what's making you ill so that they can treat you properly.
Meanwhile, be kind to yourself. Rest when you can (not easy with a young child) and see what you can do to take the pressure off. Try and make things easy for yourself where possible. You don't have to be the perfect mum - there's no such thing - so if you have to resort to a take away or clothes don't get ironed it's no big deal. I don't know how old your son is, but once mine were old enough to leave to their own devices for a short while, I used to head for the loo and shut the door for some peace and quiet! Lol! If he's big enough to entertain himself, it won't hurt him to do so, and is it such a bad thing to allow screen time for a while? As long as he knows you are there for him when he really needs you, he'll be fine. I'm not advocating this as best childcare practice, but you need to look after yourself first or you won't be able to look after him. It's all about priorities when you're not well.
By the way, I have read on the internet that with Bronchiectasis you may only have 5 years to live. This is RUBBISH as many folk on here have already tesified! When I asked my consultant if it would shorten my life he replied, 'Not by a single day!'
So try not to worry too much for the future. Think about 'today' and enjoy spending time with your son. Make the most of your good days and don't beat yourself up about the days you don't feel like doing much. We all need a day off sometimes!
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