Hi All, I know I’ve been asking quite a few questions as I currently have no professional support, but this is one I really would like answers to, even though I suspect they may be a bit depressing.
I was diagnosed with bronchiectasis 8 months ago and have had one exacerbation in that time. I am addressing the problems of lung clearance and awaiting an appointment to the Royal Brompton. From this forum, I gather that many people with bronc develop serious infections in their lungs from micro bacteria and fungi. Many people appear to be on permanent antibiotics and some requiring oxygen. I am wondering what I can realistically expect as a prognosis. Is it a matter of how well I well I look after myself and steer clear of potential infections, or does it depend more on the roll of the dice? The really nasty bugs that infect gunky lungs are just in the air and soil and can’t be avoided, unless I deprive them of a habitat in which to thrive. The infectious people that can give me chest infections and cause more lung damage are everywhere too. What kind of future should I expect and will my life become an excercise in damage limitation?
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Seagullcity
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First of all, you are the same person that you were before your diagnosis. You had been living with it for a long time as it does not come on overnight. Now that you know that you have it you can set about managing so that you have a normal and productive life. This means a good bronch specialist, daily lung emptying and the right antibiotics in high enough doses or other delivery systems for exacerbations. This is why the knowledge of a bronch specialist is essential GPs and general respiratory consultants don't have the knowledge. The Brompton should look after you well.The problem with forums like this is that we get to read about the rare things that people with our condition can get..They are not to be expected in the normal course of things.I have had extensive bronch all of my life. I am 74. I have never had a fungus or one of the rare bacteria. I have lived with pseudomonas since 1986 and because I scrupulously empty my lungs it has very little effect on me outside the occasional exacerbation.
Do not over think it.
I have had a normal life, work, children, travelled. As a child I was taught a routine in caring for myself which stays with me today.
You are going to be in good hands. Develop your clearance routines, learn to recognise when an exacerbation.is coming and which antibiotic the hospital want you to have by you.
Get plenty of exercises within your capabilies.
Avoid people with viruses. Most bacterial infections ride in on the back of a virus.
Use cold and flu blocker around your nose and mouth when you go out in public and coldzyme if you feel a virus coming on..
There are quite a few of us here who will be pleased to support you
Cheers Swizzy for your detailed and proportionate response. Personally I’m not convinced that bronch is something I’ve had for a long time as, for me it seemed to come from Covid, then long Covid, where before I had no health issues and was extremely active for my age. It took 14 months for diagnosis.
But anyway, your reply has told me that I’m largely going about things the right way (thanks wholly to this forum), but I will arm myself with some cold and flu blocker and some coldzyme.
I expect I will feel much better informed and cared for once I get my referral to a specialist, but in the meantime you and others on here have been invaluable. S
Ah yes I forgot that you had covid. My consultant told me that statistics coming from China show that covid seems to leave bronchiectasis in some people. Of course, it will take years for our medics to launch proper research into this but as people like me developed bronch as a result of pneumonia in childhood, some from whooping cough, lifelong asthma and other assaults on the lungs it seems logical that covid could do the damageYou are going to be fine because you have the right can do attitude. It can be scary to be dropped into the strange pond of something that you know little about or how it is going to affect you but I am sure that you will soon become expert at handling it.
Thank you, I hadn’t even heard of it when diagnosed and was given nothing more than an inhaler, an emergency pack and a recommendation to learn to live with it! I expect any illness that can make you cough for hours a day for months on end can cause lung damage and lead to conditions like bronc. I guess time and research will tell, S
I think that it is the level of infection and inflammation caused by the covid which does the problem. Anyway, what’s done is done. Hopefully before long it will go from being at the front of your thoughts for most of the time to simply part of your daily routine like brushing your teeth.
Yes, I think it needs to. Just been out and bought coldzyme and something called Dual Defence. Couldn’t find cold and flu blocker but will try on line. Cheers, S
Coldzyme is a viral blockers & the dual defence reads like it is and shortens colds+ flu too. Don't hesitate to use them if people visit or yr among people. Later,I blow nose and cough up to clear out any viral particles.xx
Drs can't always give prognosi.yes it is damage limitation,mainly by protecting ourselves & self care - incl lung clearance,exercise,healthy diet+fluids,medication, immunisation + avoiding viral infections as much as poss - I use coldyme throat spray+ vicks rescue nose spray- both viral blockers.at home,I use air purifiers if have visitors.i always have handgel on me,use masks whn at drs,hospital,in shops.i take vit d+c supplements+ prophylactic antibiotic azithromycin.infections cause more damage to our lungs so it's important to protect them.if u do get an exacerbation,treat promptly
Thank you Patk1, all good advice and I am masking up in shops and at doctors. Attending my table tennis sessions is a bit worrying but the excercise is very good for me. I try not to be too near anyone for long.
Both good practical replies above. Avoiding viruses is (obviously) one of the hardest things. You need to educate your friends and family so they don't come to your house with infections. Keep at a distance from other shoppers when you are out. Decide what you are willing to give up or strategise alternatives e.g. I never go to the cinema with my friends in the evening but look for morning or afternoon screenings. A thing to remember with those you hang out with is that people can be at their most infectious when they are asymptomatic.
Covid has given us a language which people now recognise, particularly "shielding". People understand this now so it's a little easier to communicate what you need to do to keep safe.
We're all different so as Patk1 suggests, doctors can't always give a prognosis. When I was diagnosed with copd I asked my doctor for a prognosis. I was using the term inaccurately as what I meant was - not how long will I last but how will this develop. He looked at me and said "you'll probably make 75". Well I'm almost 79 now and despite progression still going strong. He might have sussed out what I actually meant - he was a professor of general practice after all - and I was upset with what he said. I mentioned this to him later and he apologised very sincerely. A decent man!
There are new habits you will need to develop but concentrate on what you can do, rather than what you can't. I'd suggest rather than thinking of damage limitation, think of what you need to do as self-care. Good luck
So I guess by ‘prognosis’ I meant the same as you I.e how might things develop over time. As Swizzy noted, you can get a skewed impression from posts on this site, where people have quite a range of complicated lung conditions. My day to day life is fairly simple as I work from home and mostly only contact with my partner and my son. I do find I am having to make a lot changes to my life.
It's a shock when you are first diagnosed and sometimes, it can be a while before you get on top of it all, but you will!Things I found most helpful:
1. This forum and the knowledge that people can live well with brochiectasis as long as it is properly managed.
2. Pulmonary rehab is really worthwhile. If you can be referred, go for it! It is a programme of graded exercise and information. You will meet others with lung conditions and may be pleasantly surprised at what they are achieving on a daily basis.
3. My local Breathe Easy group was a lfe saver in the early days. My gp told me there was no PR group running locally but we had a resp physio come to the group who said that there was, and she gave me the info so my gp could refer me! I got a lot of useful information from the regular speakers as well as companionship and good humour.
4. I made sure that people with colds etc kept their distance. This was an issue in the early days as my youngest grandsons were at the snotty stage, but family complied and always phoned to let me know and gave me the choice of seeing them or not. Some friends needed gentle reminders.
5. I have a lovely consultant who is happy for me to discuss anything lung related with him.
6. Azithromycin has been a game changer and has given me my life back. I take it three times a week. At first, I was not able to take it as was having paroxysmal atrial fibrillation and severe vertigo attacks. Azithromycin can make those worse.
Instead, I took doxycycline from November to April for several years.
Once my vertigo had stopped and my cardiologist was in agreement, I asked about Azithromycin again and have now taken it for two years. The only infections I have had have been COVID and a recent viral infection.
This is much better than the three or more bad infections I was having every year before taking it.
7. Clarithromycin helps to loosen the mucous so it is eadier to clear.
8. It's important to enjoy each day. Find something pleasurable to do or think about. See friends. Join clubs. Do what floats your boat!
Some aspects of your life may be a bit different for a while until you find the best way of managing the condition, but it needn't stop you having fun and enjoyment.
Thank you MoyB, it sounds like you’re really on top of things and that’s encouraging. I’m over the shock of diagnosis and much better informed now, especially since reading some good, recent, scientific and clinical papers to better understand the immune response involved in bronc and the cycle of inflammation. I note a lot of people are prescribed azithromycin and have fewer exacerbations as a result. A proper consultant will make a big difference I suspect and I hope to get an appointment before too long. Thanks for all your advice, S
Moy, I also have a heart arrhythmia and vertigo/dizziness. And I am on azithromycin too. I don't think my GP knows that azithromycin can be a problem - what has your consultant said about this? I've been out gardening and constantly losing my balance with woozy feeling in the head, had this for about 3 weeks now. Im glad doxy was working for you and you're now ok with Azith.
Any helpful info much appreciated. xx
Apologies Seaguilcity for piggy backing onto your post. xx
I was having really awful vertigo attacks. I have Menieres Disease which had been in remission for 15 years but came back 10yrs ago with a vengeance. This also coincided with my having a very nasty stomach bug that resulted in aspiration pneumonia and 4 days in hospital.
Not long afterwards, I was in hospital again with community acquired pneumonia and my discharge letter said I had COPD. My GP said, 'No you haven't,' but he ordered a spirometry test which appeared to show that I did. I already had an asthma diagnosis.
I went on for about a year with one infection after another alongside the vertigo and paroxysmal atrial fibrillation. I finally asked for a private resp consultation and the lovely man put me straight on to his NHS list so that he could do a CT scan as he was convinced that I had Bronchiectasis - which was correct.
He discussed a lot of options with me but said that he would be reluctant to put me on Azithromycin as it can make AF and vertigo much worse, and he felt that I was already suffering enough. So I started with new inhalers and regular reviews.
My chest was in quite a state at this point and my daughter in law who is trained in resp physio came over and showed my husband how to do postural drainage with me, so we followed that for a few months and it was very helpful, but I remained very unwell.
So then my consultant started me on winter doxycycline which I took from from November to April. This did keep most of the bugs at bay but I was still having three or more infections a year and still suffering with vertigo!
The vertigo stopped in November 2019 and, as is the way Menieres works, I am now in remission again.
On two occasions that I had chest infections, I had to stop the Doxycycline and change to Clarithromycin. The difference that made was incredible and my chest remained clear for some time afterwards.
I raised this with my consultant and asked if, given that I was no longer having vertigo attacks, I might now try Azithromycin as it is from the same group of antibiotics as the Clarithromycin. He wouldn't prescribe it until he had discussed it with my cardio consultant as I was about to have an ablation procedure to help with the PAF which had become worse.
I can only tell you that the cardio consultant agreed that I could have it and so it the Azithromycin was prescribed.
Unfortunately, I cannot tell you how it might affect you as I have been fine with it.
Do you know what causes your vertigo? Do you see a consultant about the AF?
My old GP always seemed reluctant to discuss anything that I might bring up - it was as though he thought I was questioning his knowledge, but my consultant and the GPs I see now are all willing to have proper two way conversations and it's made a huge difference. I always admit to having Googled and have said to more than one, 'I'm not suggesting that Google knows more than you do, but it has given me food for thought and I'd like to discuss it with you to see what you think.' The younger GPs seem to be absolutely fine with this and my resp consultant who is more mature (trying to retire!) is just such a lovely person that he gives everyone time to discuss as much as they want to. It makes for late appointments usually, but I don't mind that as he really listens.
I'm sorry, this hasn't been much help in answering your questions, but I think that it's wise to know the story of why I wasn't on Azithromycin and how it then came about.
It has really been a game changer for me and I have had no vertigo or increased AF since taking it. To begin with, I was asked to have regular monthly blood tests to ensure that it was not affecting my liver function, but I don't have them now. Perhaps I should? I'll have to check.
Vertigo and AF are both mentioned in the leaflet that comes with the Azithromycin and so I think it might be worth having a discussion about it as this could by why you are having vertigo attacks now.
I hope you're able to speak to someone who can either put your mind at rest, or otherwise, offer you something different.
Good luck. Apologies for the long ramble. I never could use one word if twenty five would do! Lol!
I'm glad you're keeping up your table tennis. Exercise is so important, and so is socialising. I was diagnosed 5 years ago and have done various forms of exercise since then- rather tailing off now, but more because of other problems then bronchiectasis. Old age is creeping up on me. You sound to be doing all the right things, so I think you'll be very unlucky if you don't remain stable for years. I think Azithromicyn keeps the bugs at bay, without any adverse effects- I was reluctant to start it, but wouldn't be without it now.
Hi. I have mild Bronchiectasis. I don't need to do airway clearance, my consultant told me that...as I was told on a certain Facebook page that I needed to do it...the woman that runs it was very nasty about it tbh. I used to get infections...but now after 3 years of being on a Biologic for Eosinophilic Asthma (another badge I've gained) I've never had a cough, chest infection or steroid or a bad bacteria in my lungs, that I often hear people discuss. I count my blessings every day!! Do you produce a lot of mucous? Have you been told to do airway clearance? I do still try and keep away from people with colds/coughs ect..and no one comes near me if they have a cold..I gel my hands after going to the petrol pumps and wash my hands after pushing a shopping trolley...covid did teach me something there as it's not just COVID I try and avoid. I also get out walking everyday...I do try and take care of myself...if I don't no one else will. I think your at a good hospital and they will look after you....ask lots of info about it.
Yes, I was taught breathing techniques to re-set my breathing (using lower lung lobes as well as upper) by the long covid team long before being diagnosed with bronc. And they suggested the hurr ing method to bring up phlegm. It was a few months into Long Covid that the Thick Phlegm Tap turned on and never turned off again. Mucolytics like carbocystine and daily nebulising of 3% saline really help as the breathing alone doesn’t really work for me. Good luck, S
Also like you diagnosed with Bronchiectasis after bouts of infections. Also IGa deficient. Also had Covid and to be honest I put it down to that. ! In terms of coping I go about life as normal - take 2 Carbocysteine a day over winter and this thins the mucus. Have a rescue pack and use masks and Coldzyme - thou not convinced it works! Swim weekly- good for exercising lungs. Hot baths help clear mucus and also try to ‘juggle your body’ ( lie on bed and wriggle up and down in a shaking movement) plus lying with head off the side of the bed by quite a long way. I am 64 and active. And don’t intend to slow down though it does creep up on us all! Hope this helps.
First of all try not to be too depressed. My wife has had Bronch for last 50+ years, so you`re not likely to "conk out" tomorrow. Main thing is as much exercise as you can manage, make your lungs work and get rid of te muck. She has Azithromycin anti-bio 3x per week and physio also 3x per week. We both had Covid back in June tat has lingered and she is halfway through a 7 day course of Amoxicillin to treat the infection. She aims to walk 10,000 steps a day even when as cold as it is. We try to avoid too much rain, dash out between showers. We play if possible 30 minutes table tennis each day, te arm movement loosens the muck as well as being good fun. Here the sun is shining so first walk of the day for the dogs. Take care, stay positive, Chris.
Yes, the TT is good excercises for bronc. I watched a video of someone exercising to loosen phlegm in the lungs, and the arm and leg movements compared to TT playing,
Don't get worried. I used to have 7+ really fruity (my consultants description) chest infections every year but when I was diagnosed I was put on antibiotics 3x a week to stop the infections. In nearly 4 years (touch wood) I have not had a single chest infection! I am 73, still go excavating, volunteer to check ancient monuments etc so do not let the diagnosis worry you. I have even had an anasthetic to have my hole in my heart repaired (via my groins!) with no problem.
I was diagnosed with bi-basal bronchiectasis in Nov 2014. This was after having an infection with a bug, Staphylloccus Aureus from end of March into November, and I believe that that was the cause of me contracting Bronch. The bug was eventually knocked out with an intravenous AB. This was after I was seen by the lung consultant at the hospital, and a CT scan. Since 2012, until Apr 2018, I had loads of chest infections. In 2017, I kept a diary and counted 18 chest infections. In Apr 2018 we had our bathroom changed to a walk-in shower room, and in that process the bathroom floor was found to be covered with Black Mould. The floor was changed with new boarding, and since then I've had NO chest infections. That is apart from a bout of pneumonia and pleurisy, when I was in hospital for 10 days; many antibiotics including intravenous. I believe that infection was the cause of my heart failure, which was diagnosed not long after.
We moved home in August 2013, and had chest infections from that time, but I think it is probable that our previous home may have had the mould, as I had 6 chest infections in 2012, and the lady of the family died of a fungal lung infection.
I also believe that your genes determine whether you are going to be prone to lung or any other health issues.
I was diagnosed about 4 years ago after several years of chronic chest infections 4-5 per year, antibiotics etc. I started regular respiratory physiotherapy 4 years ago, in the beginning it was once or twice a week, now I go every 2-4 weeks. In those 4 years I have only had 2 chest infections both COVID but both easily managed without antibiotics. I regularly do the breathing exercises, but keep going back to the physio to keep me honest. I lead a pretty normal life.
I guess the prognosis depends on the severity, but for me the respiratory exercises have been fabulous in keeping infections at bay.
I agree with all the advice from others. My Bronchiectasis was due to having whooping cough as a baby, so I guess I’ve had it all my life, together with asthma. I’m now 76. For me, it’s important to have a consultant I like and trust and a community respiratory team who I can call when needed. Pulmonary rehab is really good, not only from the exercise point of view but the information given by the physios and other people in the group. There may be blips when infections may appear but with the right meds and team, it’s temporary. I’m colonised with pseudomonas but it is well controlled with daily meds and extras if I have a flare up. I lead a perfectly normal and active life, just being aware of any possible problems, such as keeping away from people with colds etc. I hope this helps. Good luck with your appointment at Brompton, I’m sure they’ll get you in the right regime. Keep well.
I too have Bronchiectasis, diagnosed after years of struggling, when I was in hospital in 2022.
I am on antibiotics 3 times a week and have various inhalers.
I cannot shift anything in my lungs, despite having helpful advice from the respiratory nurses and physios.
I have even got a device ( can’t remember what it’s called) which is supposed to vibrate the lungs by breathing in and out through it , which really doesn’t help.
I was told at one time that I had the ‘dry ‘ type of
bronchiectasis .
I have had a couple of flare ups this year but just deal with it as best I can and get on with life. ( I’m nearly 81 and most times, despite my age related aches and pains and heart problems ) don’t feel half my age normally.
As Swizzy says, please don’t overthink it, just enjoy what you can when you can…
Hi, I was diagnosed with bronchiectasis 9 actually almost 10 years ago now. I have asthma and sleep apnea too. Sleep apnea and bronchiectasis it's common to have both together I was told by consultant. In answer to your question, yes protect yourself from bugs n viruses as much as you can. I have never had antibiotics for bronchiectasis long term, just exasperation, though I do still get chest infections nothing like inserted to, I exercise alot and swim most days excellent for lung and breathing issues, I lost alot of weight and I drink lot of water. I barely get ill much now through bronchiectasis but when I do I'm really ill, I've had covid about 6 times once once I was seriously bad with it and used oxygen for a week day n night, worst I've been was with flu 2 years ago right now actually, 7 days on drips n oxygen for the week. I just keep away from too many ppl in crowds / groups, especially this time of year, immlike a tortoise I go hibernate at home haha with the exception literally of work and gym. X
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