I'm looking for reassurance as I'm not getting it from my GP and I tried BLF helpline who offered to send a leaflet but no nurses were working and they didn't know when there would be one working so was not helpful!
I'm 32 years old have has asthma since I was 5 when I was hospitalised with pneumonia, had bad asthma as a child but very well controlled mostly since then. Yet yearly/ bi-yearly chest infections but never think much of it!
I came down with a bad one just before Easter & long story short I am now on my 7th or 8th course of antibiotics as it has still not shifted.
Had an x Ray a couple of weeks ago & it's come back that it looks like a patch of bronchiecstatis. I've been referred to a chest clinic at hospital but it may be months until I'm seen then weeks more until I get a scan.
I came home not very worried as I'd never heard of it & presumed it was a bronchitis type thing, then I looked on patient.co.uk thinking this was most factual site & it tells me average life expectancy is 5-8 years.
I have a 1 year old son. I'm absolutely terrified that I am going to decline now and end up on oxygen or bed bound!
This is made harder by the fact that I can't breathe and am exhausted all the time as this infection is still here & I have no hope that these antibiotics will do anything anymore.
Sorry for the long ramble. I've been in a complete daze since I got this news and feel very low about it. Can anyone tell me what life is really like with this condition? Does it dominate your daily life? Has anyone looked after a young family/ had an active job with it? Is it possible?
Do I need to be so scared? Can I hope to see my son grow up?!
Thank you so much. You look like a really supportive bunch.
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Rosegaia82
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Hi I found this on the NHS site. I hope it helps.
Who is affected
Bronchiectasis is thought to be uncommon. It's estimated that about 1 in every 1,000 adults in the UK have the condition.
It can affect anyone at any age, but symptoms don't usually develop until middle age.
Outlook
The outlook for people with bronchiectasis is highly variable and often depends on the underlying cause.
Living with bronchiectasis can be stressful and frustrating, but most people with the condition will have a normal life expectancy. In people with very severe symptoms, however, bronchiectasis can be fatal if the lungs stop working properly.
You poor thing, I'm so sorry all this is going on for you.
I don't have bronchiectasis but when I was suffering a bit like you in my 50's my GP thought I had it or something called Aspergillosis, a fungal thing.
A CT scan proved I had neither. It was a massive relief I can tell you.
I really hope it turns out the same for you. I too had months of infections, endless antibiotics and it finally cleared with a two month course of Azithromycin. I was ready to take a long walk off a short pier.
It turned out to be worsening & therefore uncontrolled asthma. It wasn't until a CT scan made everything clear. Looking back, I wish I'd have begged borrowed or stolen to have a private CT much sooner.
Easy to say I know, stress doesn't help and you need to find a way of breathing through the difficult times.
Look up pursed lip breathing on YouTube. This will help with both the breathlessness and help to calm you.
Hi. You sound very similar to me. I was diagnosed with bronchiectasis 6 years ago after I had treatment for Non Hodgkins Lymphoma 22 years ago. The high dose radiation damaged my heart and lungs. Winters are not good however it is all about health management. I have changed my diet to eating little and often and no more crap healthy foods only. I manage to swim at least three mornings a week in the winter and in my gym they have a steam room which makes my chest physio a lot easier. I have a physio give me a good workout once a month which makes the blood flow through my lungs and breathing is much less laboured after it. In the summer I try and walk as often as I can. You can live with this disease - it is all about managing it. Rest when you are tired (difficult I know when you have children - I have three sons), but you have to know when your body needs to repair. I don't feel that I have a life sentence, just an illness that slows me down no and then. Take advice from the doctors and limited the antibiotics to the winter months if you can. I start on mine in November and when the weather gets warmer again in the spring I try and come off them. Do not be scared as that will make you run down and depressed, a depressed body is a target for infection. Try and stay positive, enjoy your children, take them swimming with you make them part of your health management. Contact me if you need any help or support. xx
First of all...don't be scared! It's generally a manageable illness. Have you had a look at the bronchiectasis r us website? You can find a lot of useful information and support there to complement what you get on here, & there are lengthy discussion threads on most of the common & a few less than common bugs your lungs might be growing. It is a very detailed resource.
One of the things to perhaps press for if your doc hasn't already is some sputum analysis to see what bugs are there. It might be you need some specific antibiotic or if (like me) you also have fungal problems you might need itraconazole. Obviously all that is for the medics to work out but the bronch is potentially causing you to harbour several infections hence the samples.
When I was first diagnosed (actually with something similar rather than 'pure' bronchiectasis I went into a bit of a panic but there's really no reason whatsoever not to enjoy a normal life (whatever one of those is!).
Good luck & as people above have said stay positive
I have bronchiectasis and have probably had it all my life but was only formally diagnosed 6 years ago after a chest infection that would not clear after about 6 doses of antibiotics. I am 60 and you have as much chance of living a long life as anyone else but if you do have bronchiectasis you will have to manage it.
First thing is to get a date to see the consultant. Tell the GP it is urgent. If you smoke stop. You might need IV antibiotics to get rid of the infection. When you see the consultant they will hopefully order tests and you will get your diagnosis. You should ask to see a respiratory physio to help you learn how to clear mucus from your chest. You also need to exercise - walking swimming etc. I know I cannot walk up hills - so I only do that in an emergency or on a treadmill. With the right treatment and self help you will be able to live a normal life. x
I also have this and lead a normal life. I take excercise every day , do pilates twice a week and go to dance classes as well as jive once a fortnight. I have seen the physio and do my breathing excercises to keep the phlegm away.I am on steroids for the rest of my life and calcium etc. I hope you get sorted all the best.
I know it must be a shock but please try not to panic. I've had bronchiectasis since I was three and had pneumonia. I've lived a full life, had two children etc and am now almost 72 and still very active. In fact in some ways I'm better than when young because I can look after myself better but also because treatments are so much better. As the previous post said it's important to exercise and get to know about your illness. If you can go to a Breathe Easy group, certainly get information from BLF
and ask your GP if you can go on pulmonary rehabilitation. Ideally you need to see a consultant who specialises in bronchiectasis and gradually stop having so many infections perhaps taking Azithromycin three times a week. If you get an infection you'll need to take antibiotics for fourteen days and probably have a sputum test to check you're on the correct one. Then you can learn to do chest clearance exercises from a chest physiotherapist. It's important to eat well and get rest when you can e.g. take cat naps if you're children are watching TV.
This probably sounds all too much but it can happen gradually so that you get in a virtuous circle instead of the vicious one you're in now. So please hang in there, take it steady and be optimistic. You've already done the right thing by getting on to BLF.
I too have bronchiectasis - probably all my life. I am 42, swim 4 times a week and work full time. it is manageable - I am azithromycin, it doesn't work for everyone but its great for a lot of us. The advice above is great advice.
mx
Hi there,
Sit down, calm down and listen to me. I was diagnosed with extensive bronchiectasis in 1953, Before the days of regularly available antibiotics. I am now 65 and still going strong. I went to normal school and won a place at grammar school. I then went off round the world as a disc jockey. I married in Beirut, had one child there, escaped the civil war in a tank pregnant with my second child. I went on to raise those two children and went to university in my Forties. YES you can live a full life with bronchiectasis
The most important thing is that you get control of it, shake it by the neck and don't let it be the boss.
Get back to your GP. Insist that you get an appointment with a chest clinic with a consultant who specialises in bronchiectasis. This is not COPD. We have some of the same drugs but the prognosis is very different. You need to learn physio to clear your lungs when you get an exacerbation (infection in the affected area). This is most important because you have to get rid of the fluid which will re infect you. A pulmonary rehab course would be a good idea. This is how I was taught to breathe when I was a child. You will need sputum tests to find out which bug you get and an emergency pack of the suitable antibiotic to keep at home for when an exacerbation starts. If you become really unwell a course of IV antibiotics usually fixes it. I have only had to have that 3 times.
Very importantly, exercise, exercise, exercise and there is nothing better than running around after that toddler. When you have an exacerbation you will need to slow down and look after yourself to give the drugs a chance to fight the bugs. This condition can make you feel dire when it flares up.
You should soon get to know what your body is telling you. All bronchiectatics are very different and this is why you need your treatment tailored to you.
My mother was told to throw me into swimming pools and march me up hills and she did. We are not invalids, we do not 'suffer' from this condition, we live with it.
You have probably had mild bronchiectasis, misdiagnosed as asthma for most of your life. This happened to so many people who are only now being diagnosed properly.
We are at the lucky end of the lung condition spectrum because we can stay pretty well with the right treatment and daily routine.
Now kick those doctors into touch so that you can have the correct treatment . Look on the internet for the closest bronchiectasis specialst to you and insist on seeing them-and stay away from sites written by fools who have no knowledge of the condition and post rubbish such as that which frightened you so much.
You are going to have a wonderful life. Sorry if I ranted but I care so much that people with this condition do not become the victims of doctors' complacency and other's ignorance.
Do come back if you need any help. I am holding your hand.xxx
Love your response, I had just finished commenting when I read yours. I think I was diagnosed with asthma when I was a teenager but it probably was bronciectasis all those years. I go on walking holidays now and feel so much better with the correct meds. Good inspirational message from a fellow bronc x
Thank you so much, what an amazing story and an amazing message. I feel very lucky to have stumbled upon this site. I feel that battling with Dr's may be part of the problem, it's taken me 5 rounds of antibiotics to get an x ray even though I am high-risk.
I worry about what the antibiotics are doing to my body too.
I am so glad you say exercise and be busy as this is how I like to live my life.
thank you so much. I am sure I will return to you for reassurance. I can't tell you what it means at this moment. xxxxx
Don't worry about taking the antibiotics. Yes they can make you depressed, destroy the good bacteria in your gut etc but with our condition they are life savers and contribute to giving us a good quality of life. Cystic fibrosis patients have bronchiectasis (different to ours which is non cystic fibrosis bronchiectasis) and they live on antibiotics.
You may be surprised that we,the patients have the power, not the doctors or the administrators of hospitals who like to throw their weight about. They are terrified of complaints because they can lose their funding.
Go and speak nicely to your GP. Go armed with the clinic and named consultant whom you wish to see. If you can get your GP on your side they can be a big help. Be firm, insist that you need to get started with your clinic asap and do not take no for an answer.
You use your consultant to tell the GP which drugs you need. GPs are just that, general practitioners and whilst many of them know about COPD because govt policy has been pouring money into COPD training etc, bronchiectasis is still woefully ignored. Many GPs will claim to know about bronchiectasis when they don't.
NHS choices is a good website, especially if you want to make a complaint or find consultants. I don't know which area of the country you live in but there are good centres for bronchiectasis in Newcastle on Tyne, Leicester, The QE in Birmingham and of course, The Brompton in London.
I'm happy to help and also see that several other lovely people were able to offer you reassurance . We are there for you. I must say that the folks with COPD on this site are the greatest bunch and have been a tremendous support to me over several different issues.
I am very lucky in that my husband is on an NHS CCG so he can find out for me things like waiting list times and specialist consultants... I live in West Yorkshire and I know COPD is a big illness in my area as well so I hope there are good consultants etc and I will definitely push to find out.
I have always suffered from that sudden inability to be assertive when I am in a GP office but I am going to research, write it down and take someone with me.
thank you so so so much. This is helping me so much.
Of course you are right about the antibiotics, effects of them far smaller than of lung infection! I will see them as my little friends.
I have been on so many I have no idea which work or don't!
I did a sputum sample about a month ago that came back clear, but I was 4 days into a course of antibiotics when i did it.
did another one last week so I am hoping it will yield some info.
Well you have a good source of info there, your husband. Sputum samples often come back negative when there is obviously something playing you up. A lot of labs can't get down to the numbers we have and (can you believe it) don't test for the bugs which we tend to get. It is a hit and miss process which is why I keep close contact with my consultant and those who work with her at the hospital. I hope that you find a good centre. You sound very much more relaxed and positive now. We all get that terror of bossing the doc about. We have been conditioned to consider them as little gods. They aren't, we pay their wages but it is good to get them on your side.
That was so awesome to read . I am a New Zealander living in NZ and just have got so much from this site . Thank you as I too am struggling with the same issues and have been told I have broniectasis. Asthma most my life and was shattered to be told I had broniectasis. I also have extensive damage to my voice box so I have a lot of work to do to get up there and on with life. Thanks to you I feel so much more confident knowing you can keep all under control. The only prob I have is a husky voice and a strangling sensation in my throat plus get exhausted a all the time. Thanks again Pam NZ
thank you Pam for your kind words. So many people like you are already doing a great job of living with the health problems thrown at us. Sometimes it becomes tiresome and we lose our our confidence. This is when we gain so much from the great souls on this site. I will be thinking about you.
Great inspirational replies Stillstanding. 👍 I'm loving this conversation, it's what this forum is all about.
Rosegaia82, I always take a very high count of probiotics! 5 billion after antibiotics. I took them for two months after the last few infections this winter/spring. I believe it's vital to get the balance back in your body. You can order via Amazon & great reviews & advice to read.
I also do everything in my power to keep my immune system in fighting form. Lots you can do to prevent catching more bugs (full time job with children). I know it sounds paranoid but I don't touch the door handles at the GP surgery & use their hand sanitizer. I use a product from Boots: Cold and Flu Defence which contains antiviral.
Flu jab annually. Pneumonia jab too.
There's so much to take in. Perhaps you could opt and save this thread for future reference?
SS is so right about being proactive with medics. My consultant was foul refusing a CT scan so I insisted on seeing someone else, best thing I ever did.
I also politely turn down amoxycillin "no thank you, it's never worked for me and I would be back using your precious time (and mine) in a week". They are reluctant but I press it.
See the GP in your practice who's most helpful. Forget your own if he/she is useless. Some receptionists are crap too.
I may be wrong, don't GPs have to specify on the sputum test form what they want to test for?
Thank you so much for your reply. I'm 33, and was diagnosed a week ago. I've been kind of OK, putting lots of things in place, a diet of daily vitamins, vegetables, plenty of water, buying an aerobika amongst other things so was feeling really positive about attacking it head on. Today though, I've had a serious depressive crash and you actually made me do a little cry with your story. In a good way!! So, thank you very much for taking the time to share.
Swimming is a great idea! I can do it on the way into work, and they have a steam room there to get stuff moving around down below.
Feeling a bit like Rocky at the start of Rocky. I need a montage.
I have asthma and bronciectasis, was diagnosed with bronciectasis about 4 years ago. Once you get it under control you will start to feel better (i am on a permanent antibiotic treatment, ) try to keep yourself active, I feel better now than I have in years. Don't panic, I know it is really scary especially when you have a bad chest infection but try very hard to keep your lungs clear. Also I find that if you have reflux that can aggravate your lungs, so sleep propped up slightly if necessary and have indigestion products on hand.
I have had a similar story with asthma since childhood and then I developed a patch of bronchiectasis after a bad chest infection 10 years ago (when I was in my 40s). The problem does impact on your life in that you are more prone to chest infections but it should not affect life expectancy. My original infection lasted some months but after that I have had many good periods with just an annoying cough. I go to gym, travel and work normally. My respiratory specialist has reassured me many times that this condition should not affect life expectancy .
I think once they have identified the bug causing your infection and treat it successfully you will see that there is a very long and happy future ahead. Don't let it get you down.
Thank you, this does sound similar to me. I am worried about avoiding infection with a little one and working in a university full of sneezing students!
thank you for your message of hope it really helps.
I am so moved to have so many amazing responses to my post! I was expecting maybe 1 response!
I can not tell you how comforting I have found reading these. My GP told me nothing at all and I have been drifting about in a real panic.
To know that there are others out there living with this means everything. Getting rest is very hard for me, I don't like resting at the best of times but the last year with a baby who never sleeps has stretched my immunity to the limit and this endless chest infection has made life a real struggle.
I am going to copy and print some of this advice. It's like being given a shortcut to getting what I need from the NHS.
I have been diagnosed with Broncos for the last 18 months. Yes it is frightening at first but you will look back in a few months and understand that your future can be really normal. Management of the condition is what you will learn yo do. My G.P. said when I was diagnosed you just have yo manage it. I had no idea what she meant. Briefly, learn to know when an infection is starting and start antibiotics. Your G.P. should prescribe an emergency pack of them along with steroids. Always give a sputum sample to make sure you are on the right antibiotic. Eat well, excersise, but most of all enjoy life with your family. One last thing if your infection keeps on and on demand a referral to a cons. I did this and and was given different antibiotics by him. Life then changed and I am better than I have been for 6 years. Good Luck, you have a normal life ahead of you, barnowl
Just read your reply. Get back to the G.P. and get that infection cleared. Then you can think about other things to boost your immune system such as vitamins. barnowl
Hi Rosegay, I agree with everything everyone else has already said. I too have probably had Bronch all my life, but I too have had a great life and have 2 lovely daughters and 4 grandchildren. Bronch can be managed and I hope you get that CT scan soon. I too take Azithromycin which is a 3 days a week antibiotic which keeps me well. I swim and do Aqua three times a week and try my best to keep fit. I had to fight for the correct Consultant and you may find yourself in this position. Keep asking, beg for help if necessary. Tell your GP how frightened you are. You need to speak to a good Asthma Nurse who will help you daily if necessary at first. I know I must have been a pain in the neck when I was first diagnosed but my nurse is wonderful and nothing was too much trouble. This site is great for information and also for those days when you feel down. So good luck. Keep us informed how you go on. Take care Maximonkey
this is the bit aimed at medical professionals rather than patients it was the first 2 that scared me so much:
Prognosis
Before antibiotics, death would occur within five years but now, with aggressive therapy, the outcome is much better. However, there continues to be a significant reduction in life expectancy in patients with bronchiectasis.[4]
10%of adults with non-CF bronchiectasis die within 5-8 years of diagnosis, with the cause of death being respiratory in over half of those.[16][17]
Good nutrition to maintain an ideal body weight and regular vaccination correlate with improved survival.[18]
Hypoxaemia, hypercapnia, degree of dyspnoea, and radiological extent of disease are closely correlated with mortality.[18]
Chronic colonisation by P. aeruginosa, severe exacerbations, and systemic inflammation (raised C-reactive protein) are associated with disease progression in non-cystic fibrosis bronchiectasis.[19]
I have just been reading through all the replies and I must tell you what an amazing, helpful and informed group of people you are. You give so much help to so many of us that I feel you should be congratulated. Thank you.
Rosegaia82 although it is concerning to have an infection for so long, I think you are in good hand. ( I started bronchiectasis with asthma. I had loads of antibiotics too before being diagnosed rightly.)
I should hope that the specialist for the lungs at the hospital would know what to ; perhaps you need a simple change of antibiotics.
Are you going to have moe tests? I hope you are seen more often than once a year. If I were you, you could ask to be referred to a pulmonary nurse. I have one who is very sweet, but very efficient. She knows about the illness, and on top of this she also knows how scared people can become.
Now thsi life expectancy; can I tell you that I have been diagnosed in 1994. yes,I had recurring illnesses, and a few hospitalisation. But I feel that with exercise you can slow down the progress.
But first, of course, you need to have this infectoin under control.
INfections occur in us who have bronchiectasis, because there is stagnation of sputum in the lungs which is the right environment for bugs to develop. Try to avoid people who cough! That's how an infection starts usually. They don't mind because they have strong lungs, but for us it's more problematic.
Anyway, I am so glad you came here to talk to us in the same boat! I can assure you that we all take every step to stop this disease. I think your age is for you. One quetion, do you smoke, or are you often in a smoky environment? I wish you well with your consultant ( ask as many questions to him - write them on a piece of paper so you can do this without being intimidated by him/her) . big welcome and all the best, Mic
thanks so much for your comment, no I don't smoke. I did work in pubs for years around smoke but not for a long time. I've been referred to a chest consultant so I don't know what tests I will have, apart from a CT scan which is very likely...
avoiding infections will be hard but I guess you get better at it as you go on?
I am desperate to get this infection under control at the moment as it's just not shifting, I'm back on co-amoxilav(?) at the moment for 2 weeks, but have been on it before a few weeks ago and it didn't work.
Rose, Perhaps you have to tell your consultant that coamoxiclav doesn't work any longer. I hade the same problem with Amoxycillin - complete burn out! That is why I am on Clarithromycin which, by the way is also used to fight TB together with Rifampicin. I had "the presence of TB" it took 2 1/2 years to shift it.
I hope you have a good dialogue with your consutlant. He provide the pills, but he can refer you to the pulmonary team nurse.
This would be a marvellous move, because nurses are less concerned with pills and more with encouragement. She would also refer you to pulmonary rehabilitation which is an assessment of your level, then accordingly sets of exercises for 6 weeks.
Systematic exercises are vital to stay the illness, even if in between you catch another bacterium.
There's another chap here (Grahamandann) who was successful to stave off his wife's death by giving her vitamins A and D, a little higher dose (i.e taking these twice a day instead of just once). His doctor was so impressed that he is prescribing this to other patients who are affected with bronchiectasis I've been convinced and I am taking the Sainsbury's cod liver oil twice a day (This includes Vit A anc D). We shall see!
I realise this is a lengthy answer, but I thought that one can definitely do something for one's condition. Please report for progress! All the best to you. Mic
Thank you for your reply that's great advice. i had 2 sputum tests come back negative today so feel like i am back to square one a bit- going to see GP tomo but not confident, had 9 courses which haven't shifted the infection.
I've been referred to consultant but am still on waiting list. Everyone seems to be saying that about the nurses being great.
thank you so much
Hi there, you have had lots of fantastic advice and reassurance already but I just wanted to mention a booklet I found helpful. If you Google "living with bronchiectasis" you should find a download from the CHSS. Hope you get your infection sorted soon. X
Brilliant advice from all, especially our lovelies stillstanding and flib.
Try not to panic - easier said than done I know - but don't get ahead of yourself as you don't know yet what you are actually dealing with.
Like stillstanding I have had non cf bronchiectasis since the start of the NHS at 5 mongh old from double pneumonia and whooping cough, when all we had was penicillin injections and postural draining physio.
Yes you can live a pretty normal life, working, children etc - normal stuff. I wouldn't be being honest with you if I didn't say there will be no struggles, but I guess you will be wanting honesty. I think you will find life much easier once, if you have bronchiectasis, you get the correct medication and self management.
I live in West Yorkshire too hun, Leeds to be exact. You ideally want to attend a hospital with an adult cf unit, because respiratory consultants who have a special interest in cf are also up to speed with bronchiectatics. There are quite a few respiratory specialists at the hospital I attend but we have 3 cf specialists who are all very proactive and if you want their names, please don't hesitate to pm me.
You are going to get over being 'timid' with your GP as if you have bronch you will have to be your own advocate. If you have had so many infections, please request a sputum sample. You will need to know when samples are collected from the surgery as the sample should ideally be less than 3 hours old from coughing up to lab. You might them want to request, when you know which con you want to see, a referral. Take an ounce of courage from us when you ask and think 'what would the old bronchi bags do now'.
A consultant would give you all the tests required, should refer you to respiratory physio who will teach you the best methods of lung clearance to suit you. Con will also sort out your medication and inform you GP.
Enough to take in for now I am sure. BTW the medication and maintenance may vary to each bronchi, but the main aim of both mild and severe is to do all you can to prevent it getting worse and keeping on an even keel as much as you possibly can - takes a bit of effort.
Let us know how you get on hun.
love cx
Sorry it's a bit jumbled in parts - knacked - just got back from a few days at the coast with my 4 yr old granddaughter.
Thanks so much that is brilliant information - I had no idea about the sample needing to be tested quickly. Mine have sat in a box at the dr's surgery!
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Blue inhaler .
I have been prescribed antibiotics (Azithromycin 250mg) as a prophylaxis to take 1 x 3 times a week. Is anyone aware of how this affects us?
Chest infection/cough and antibiotics.
Almost a year and still no diagnosis, don't know what to do
