bronchiectasis

Hi there. I was diagnosed with bronchiectasis 4 years ago and was told it was mild. I am now beginig to cough every morning .have an awful taste in my mouth and feel very low. I feel as if I have just been left for the condition to worsen.

I have been looking at research and clinicl trials for the disease, but there doesn't seem to be anything out there.

I have googled surgery for the condition and apparently there is surgery but that is if only one lobe is affected. I don't knoe if I have one lobe or two as I have never been told. With regards to surgery- there is the chance of a lung transplant but this is available only when u are the end of life stage and chances are u wont survive the op. There is also the problem of the availability of the organ.

I am just looking for something to offer me some hope. I feel as though I am in a big black hole and there is absolutely no way out.

Can I ask someone when the lungs become congested is that how they are for good, or do they improve with certain techniques? I have recently retired and want a few holidays abroad, but am concerned that thwe constant couging will make travelling and even socialising a real problem. Sorry to sound so negative, but am really struggling. Does anyone know of any clinical trials? it just makes sense to me to try and combat the condition while it is stil relatively mild as I hope I am still in the mild stage.

49 Replies

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  • I know theres lots you can do for bronchiectasisis so dont panic. I am waiting for referral to Royal Brompton to see if I have it. Ive seen posts here from others whove had it many years and am sure youll get some good advice soon. Youve come to the right place. Robin

  • Hi Falcon. You should be aware that this post that you have made is unprotected. You did not click the Padlock after you wrote it and before you Posted. This means that your post and any replies that other people may make to it will be able to be read right across the entire WWW for ever. As for searching Google about your medical condition this is probably the worst thing that you can do.

    You would be better advised to use the Search box here to research the topics that you are interested in. If you cannot find specific information then please do post a Locked question and you will probably get an answer from a fellow sufferer.

    As you have not created a Profile I do not know where you are located. If you are in the UK then you can ring BFL FREE on 03000 030 555 and talk with a Pulmonary Nurse. You may also find useful information at blf.org.uk/

    Regards, Rib

  • I have not posted very much on forum, as I just like to read the posts, but saw your comment regarding the padlock.

    Could you tell me where to find this as I can't see a padlock.

    Thank you.

  • Hello inhaler. There is absolutely nothing wrong with using the Community in the way that you describe. There are a great many members who prefer to just observe.

    Please do forgive my poor way of explaining the "padlock". The option is the last choice before the Red SUBMIT button. It is a DOT in making the post available to Everyone or Community. If you leave the Dot in Everyone them the entire Web can read it. If you choose the Community option then your post will receive a Padlock.

    Once again, I am sorry for the confusion caused by my inept description. Regards, Rib

  • Thank you very much for your reply, I am afraid I am a bit slow when it comes to the computer so not up on all the safety issues, the only thing is I can not see a red dot.

    There is just submit button and cancel,

    I will try to search for it.

    Regards. Inhaler.

  • Just above the SUBMIT button is a question

    Who is the this Post for?

    o Everyone

    o Community

    You must right click the Community dot and it will fill that circle in instead of the Everyone.

    Don't worry about your computer skills, there are plenty of people who have rarely touched a computer before they come here. There are always people who will teach you what you need. Rib

  • Thank u so much for your response. Im not very good with computers as u no doubt have worked out!. I am in North Wales. Thanks for the phone number- I will ring them and will use the padlock. Thanks again.

  • There is an adult cf centre in Penarth. cx

  • What's the padlock thing???

  • When you Write a Message the very last thing that you are asked is whether the Post is for

    Everyone ●

    Community ○

    If you leave it set for Everyone then the entire Internet can read everything you write a can do so forever.

    If you click on the circle after Community then only Members of BLF will be able to read it, and the Post will have a Padlock beside the title to show members that it is safe to reply.

    HTH. Rib

  • It sounds as though you don't have a consultant? If not you really must push to get one, and not just any respiratory one, but one who is a specialist in bronchiectasis. (My iPad just rewrote that as "bronchi ecstasies" too clever for its own good.)

    It is not my condition so I can't really help. There are plenty on the forum who do have it. I think they shorten it to "bronch". Am I right? It seems to be a bit of a postcode lottery. But there must be good consultants near you.

    Be prepared to be tough about it.

    Love

    K xx

  • Bronchiectasis can be a pain in the brain but it can be managed. Sputum clearance, antibiotics and steroids when necessary for infections/exacerbations, exercise , fresh air, eating wel, resting well - all these things will help. a good doctor is vital and an occasional xray or scan. I've had it for 42 years and it's only been a big problem for the last two years. Don't worry, Bronchiectasis isn't as bad as you fear. Good luck !

  • Billiejean. You seem to be my mirror image. Ive long term Bronchiectasis - over 40 years.

    didnt bother me until 18 months ago.

    The advice is bang on.

    ann x

  • Doppelgangers maybe :) So how severely is it affecting you now ?

  • Hi Billiejean.

    Sorry. Not to clued up on the forum yet.

    Was your question for me!

    😯. Duh.

    Ann

  • Sorry Ann, the question was for you, I didn't make that very clear.

  • Hi.

    No worries. I'm still trying to find the lock.

    At moment Bronchi escallated. Oxygen level went to under 70 and I had a 999 ride to hospital. Great treatment. Not pleasant! Was In for a week. I have osteoporosis which doesnt help. Am going back to Pul Rehab. My main concern is mobility outside

    Cant walk for more 2-3 minutes.

    Hoping the mot I've had will help. Especially shen i get back exercising.

    Ann ☺

  • Hi Falcon, I caught a virus 2008, coughed 24/7 (misdiagnosed for 2 years) correct diag 2010. Best thing was a lesson from physio to get sputum up. Stopped the coughing 24/7/. Specialist here hopeless (same one if you go privately) I do use shaker/flutter to help get mucous up but still find lying on side with affected lung on top huffing and puffing the best way. Cannot do that v well as broken sternum has made everything worse. I cannot pretend that it has not affected my life (long distance walking a no go) but regular exercise, doa bit, rest a bit. It must have been harder when you were at work. I was put on a bullying regime (by husband) exercise etc as you are never ill in this house. plus digging into savings to get some warm dry weather. Avoid humidity. I get lots of allergies, acid reflux. I am not so bad as a lot here Kaye as have one lung working but it is hard to avoid infections. Private message me if you want. Life is not black just a bl...y battle. Do get to see a physio to get that mucous up at the very least.

  • I agree with you totally Kathiesue where you say "lying on side with affected lung on top huffing and puffing the best way" I am forever telling people that but to no avail. Nice to know someone else knows the secret.

  • Hi Gerald, I still wish the pipe worked better as the huffing and puffing is very tiring. I do not know if other devices are worth trying. Kaye

  • Hi falconcottage

    The best info on bronchiectasis, in my opinion is

    chss.org.uk/documents/2013/...

    First things first. If you have a foul taste and your symptoms are worse that would indicate you have an active infection going on. Please see your GP and ask for a mucus sample to be sent. You may need to start on antibiotics.

    The thing which most annoys me is when I hear of someone with bronchiectasis who it appears has been short changed re treatment.

    It sounds as if you were diagnosed and left to get on with it - is this correct or do you have a consultant. If you don't, then you should have. Do some research and try find a respiratory consultant who has a special interest in cf/bronchiectasis. I know I bang on about this but believe me it makes a difference. If you're not sure how, please pm a large city you have access to and I may be able to help you. Once you have chosen a consultant you can then ask your GP to refer you.

    Your consultant should refer you to a respiratory physiotherapist who will teach you various methods of mucus clearance and gadgets which can also help. You will then be expected to do your own mucus clearance.

    There are also medications which help with mucus clearance. The congestion would suggest that you are not presently clearing your lungs - not surprising if you have not been taught.

    I can understand you feeling 'in a big black hole with no way out', all things considered but please don't get ahead of yourself, there is life to be had with bronch. Many of us have had it since childhood and some, including me since babyhood.

    You will need to be your own advocate and make sure you get the treatment you need and deserve.

    At this stage I wouldn't go searching online - although there are some reputable sites, some are most unhelpful, even scary.

    Whilst it is true there has been nothing new specifically for non cf bronchiectatics for decades, there seems to be a much needed renewed interest in this disease.

    I am not putting links up at present as I think you have more immediate stuff to sort out but there has recently been a consortium of euopean specialists in bronchiectasis and there is now a bronchiectasis registry - they are wanting to hear from those with bronchiectasis. I am waiting for a reply to my email at present. A trial has been completed for Bronchitol in bronchiectasis and there is presently two trials 1. inhaled Cipro and 2 nebulised Cipro in no cf bronchiectasis.

    Unbelieveably 50m euros has been released for trials into cf and non cf bronchiectasis to run alongside one another. Brilliant, exciting and long overdue news.

    Please see your GP re this taste and increased symptoms.

    Let us know how you get on.

    Love cx

  • fantastic reply x

  • I'd love to know more about that registry if you have info. I'm 8 years into diagnosis with this disease

  • I haven't put more links on this thread purposely, as falconcottage has more immediate matters to deal with. I will start a new thread when I get some feedback and may then be able to tell you more. I have already posted about the 50m euros but will put a new thread up for anyone interested who missed it.

    Love cx

  • Thanks a mil. I haven't seen your initial post on it, I don't get on here too much with a young baby to mind! Xx

  • Just put it back on as a new thread. Exciting isn't it!

    cx

  • Hi, Cofdrop, I am one of those who hasn't got a specialist. However, my GP did agree I needed another CT scan and lung function (five years since the last ones) I had these done a few weeks ago and still have not got clinic appointment so guess things are still quite good. I have had bad experiences (like many others on this forum) at hospitals over the years and the GP I see re the bronchiectasis agrees with I can keep away from the hospital. I have to go with other matters. Now I am wondering if I am doing the right thing. Kaye

  • I can't see how your GP can have the specialist knowledge a respiratory consultant would have. Has he shown you your scan and explained it? I feel all bronchiectatics should be monitored by a resp con, even if con feels someone's condition is stable enough to have infrequent consultations. Again if you want to let us know of a large city or hospital you could get to, there may be someone on here who could give you the name of a good consultant and you can then ask to be referred to that particular con. If GP refuses, which would say more about him, then I would see a different one.

    Good luck

    love cx

  • Thanks K

  • Thank u for your reply. It has made me feel some what better. I think I need to be referred to the specialist who did the initial diagnosis, so I know what im looking at. Am pleased new research is being conduduted iton this horrible disease, look forward to more news regarding this.

  • Thanks for the link to that site. Certainly the best information I've seen.

  • Hello Falcon, well here I am and the name says it all. Stillstanding after a lifetime of bronchiectasis! I am 65 and have had it since I was 3. Too extensive to operate and I will never qualify for a lung transplant because I have too good a quality of life. The most important thing for you is toget control of the daily management of the condition and to recognise when you are having a problem (an exacerbation brought on by an infection by one of various bacteria). I hope that you were diagnosed by a specialised bronchiectasis consultant. Unfortunately many doctors and chest clinics claim to know about it but they have little or no specialised knowledge. So first thing, get your GP to refer you to the right place. A persistent cough is not usual for bronchiectasis so you may have a virus or an exacerbation. It needs looking at by the experts. Then you will need some instruction in how to clear the gunk out of your lungs which is very important, especially when you have an exacerbation. You will also need a rescue pack of antibiotics to start as soon as you feel that it is getting the upper hand and maybe your consultant will give you an inhalor. It is a complex condition and we are all different. I'm afraid that you will have to be pro active and nag those doctors to get the right treatment. Most most importantly, don't let it stop you doing anything. I still travel all over the world, go to the theatre, socialise,enjoy my grandchildren etc. Try to eat healthy food and walk walk walk. Exercise too if you like it.

    Stay away from sniffers and coughers ( Vicks First Defense up your nose before going into crowded places is good) and other peoples' smoke. You are going to be fine. There are quite a few bronchs on here and we are tough old boots. Good luck, do let us know how you go on.xx

  • Hi stillstanding, I was diagnosed with bronchiectasis 8 years ago but have s persistent cough all day every day. I was never told the cough wasn't common. Very interested to read that

  • Hi there, yes, lots of things can make you have this kind of irritated cough. If it is rattly it most likely means that you have secretions stuck down there and need to get to battle with removing them. Some people get a reaction to a fungus called aspergilla. I had this some years ago when my immune system was under pressure. Eventually my body fought it off. It could be an allergy to anything in your environment. The cough does need proper investigation because it is very wearing and should be treated, not taken for granted as part of the condition. I suggest that you insist on seeing a consultant who specialises in bronchiectasis. I know that I and some of the others on here with bronch keep banging on about this but it is crucial. More and more doctors are being trained in COPD because it is government policy but we and many other lung conditions are being neglected. This was painfully obvious when I acted as a patient for Doctors exams this summer.

    COPD is very different to bronchiectasis with its own set of problems. The treatments seem the same but they run aside of each other, not together. I hope that makes sense.

    Unfortunately most often we all get dumped into the same clinics and the consultants themselves are swimming in the dark with us. Many GPs have no specialist knowledge at all, end up simply following the hospital recommendations or worse, some refuse to prescribe the drugs because of cost. Not mine though, they do everything that my consultant asks and I love them for it, even though it is obvious that I know more about bronchiectasis than they do. Good luck. I do hope that you get help to get on top of it.

  • Thank u for your reply- it seems the world is not as black as I thought

  • Falconcottage I told you youd come to the right place didnt I. Great advice from cofdrop and stillstanding. Helpful to me too. Thanks both. Robin

  • YW hun and thank you for your kind words. I am happy if you found anything helpful and I know stillstanding is very generous with her knowledge of bronch.

    love cx

  • I also have bronchiectasis, had it about Ten yrs and still learning about the condition. There are lots you can do to improve the symptoms, mainly regular physio and if not already on them a dthree times weekly antibiotic.

    The coughing and excess mucus is a nucience but you will learn to cope with it.

    There are people on here who have had the condition since early childhood and are now in their 80s so don't give up.

    The winter months are the worst for me, but I try to take a winter holiday short flight somewhere warm.

    I am sure you will get lots of replies from people in the know about this it's the reason I joined this forum.

    Good luck.

  • I have had Bronchiectasis since I was 2 years old...and I'm still here! The main thing is not to worry about it. It's never inhibited my life in any way that I can think of and I have it in both lungs. I have travelled the world (mostly on my own) and never given it a thought. There's not a lot of treatments for it - except surgery as you say, but look after yourself and you'll be fine. What's brought me to my knees is Emphysema ...not Bronchiectasis, and that was caused by me being an a*** and smoking for many years.

    Enjoy your retirement and your holidays.

  • Sorry you have emphysema as well as bronchiectasis. As you know bronchiectatics differ greatly and whilst we all try to live as full a life as we can, I have never heard any bronch say it had never inhibited their lives in any way they can think of, so I am really chuffed that this is the case with you hun.

    Personally I missed out on years of schooling, spending a huge chunk of my childhood in hospital (That's why I am so thick, but I guess you have sussed that out by now). I do know bronchs, especially those colonised with nasty bugs who have a tough time indeed. I can't say in all honesty the heavy treatment burden doesn't interfere with my life and that of many others. Roughly 2 and half hours a day taken up with treatments just to keep on an even keel and not always succeeding then, along with many others. When I reently went to A & E whilst away to get a needle and syringe the 'baby doc' was surprised when he asked if I had to do this every day and I told him twice a day plus I have already nebbed bronchodilator, nebbed hypertonic and done physio before I needed the needle to neb my antibiotic. (was away and forgot needle for last dose)

    Well whatever you're doing it's obviously working. Keep up the good work hun.

    love cx

  • What I meant CD was that I've lived a fairly "normal" life. I had 3 children and travelled quite a lot I was in the theatre when I was young and did a lot of shows - dancing/singing etc., It's only since I developed the dreaded Emphysema that I've stopped dancing.

    Like you however, I did miss a bit of schooling and only attended in the mornings until I was 8 years old. I also had to go into hospital for a "deep x-ray" every year - but that was about it. I did have to work for my degree post college though and it took me years longer than it should have done by fitting it in with my everyday life.

    I've never really had much treatment for it - only postural draining with palmation when I was young. My GP (and the specialist I saw in Royal Brompton last year) told me that there is no real treatment for Bronchiectasis - just management.

    Stay well. XX

  • Hello Nikkers. From what ive read youve been lucky not to get "colonised" and your bronchiectasisis doesnt sound as if its spread, is that right. Do you do regular physiotherapy and take preventive antibiotics regularly? I read its now treated the same as cystic fibrosis lungs, or should be. Sorry to quiz you but would like to know how youve avoided problems so I can follow suit if need be! Robin

  • He is absolutely right - I think that's why it is so exciting there is much more renewed interest of late. It may all come a bit late in the day for me but will be good for upcoming bronchs.

    Thank you for clarifying and I can empathise with that.

    Respect after missing lots of schooling on you getting your degree. They were very different times 50s and if I wasn't in hospital I left school 2 afternoons a week and got 2 buses up to the hospital for physio. I have been to many nightschools for various subjects but still never feel I can make up for the constant 'normal' education of regular school. Things are different now of course, schools within hospitals are accountable in a way they never were.

    Wow it sounds quite exciting singing and dancing on stage - bet that was lots of fun. So sorry that you have had to stop something you obviously enjoyed and was a big part of your life.

    Love cx

  • I was trying to send a pic to you in a PM but couldn't figure out how to do it. No worries, it wasn't important. XX

  • Now you've got me intrigued!

    cx

  • Nothing much CD, just me when I was still in stage school. I didn't particularly want to put it on the site generally that's all XX

  • Hi Falcon,

    I was diagnosed after going into hospital in 2011. I had a severe infection was treated with lots of intravenous antibiotics , they sent me for a ct scan and found I had bronch, after a lot of false starts and trying different things out, I have now been on long term antibiotics for a while. I have also ulcerative colitis and am have an ileostomy, it is all linked I have been told. Since joining this site I have had lots of help and it is good to know that I am not alone with this condition. Thanks to the advice on here I tried with manuka honey, vitamin c and d supplements. It will never be cured but can be lived with. If you have to stop and take a breath while you are out and about it does not matter. I also have a good consultant and Gp which does help. Anything that you can do to help your self is a plus, only you know what you can and cannot do. Do a bit each day if you overdo it rest up till you feel good again. I have travelled since diagnosis it can be difficult but if you listen to your body it will help. I also have inhaler and mucus relief capsules which thin it down. If you would like to contact me please do. Hope at least some of this will be of help to you. Take care.

    Christine.

  • Thanks Chrissy everybody on this site have been helpful and positive.

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