new to site..since december last year had 3 chest infections. first 2 lasted 5 weeks and then 2 weeks to regain full fitness. given anti biotics which partially worked.
this 3rd infection started mid august. due to loss of weight and fatigue my doctor put me forward to scans , x rays and blood tests. all good except for mild bronchiectasis found. my cough slowly reduced 3 weeks ago but still have slight cough and chest still sore. so presume cough and sore chest is part of this illness. i used to be very active and fit and go to gym, swim, play and coach sport. i have just gone back to gym and can do use treadmill(walking only) and bike and a few weights. hoping to swim next week. not being able to coach or play sports has really effected me as i have a good social life through them
i have a respiratory clinic appointment in 10 days so see what they think and advise.
i have read that exercise is good so am pleased about that!!
i have suffered from fatigue since beginning of second infection. between second and third i managed to realise i could still play and coach even though the fatigue made me feel i couldnt. at the moment though i cant seem to do much physically. small jobs in garden and in the house are ok but after an hour i am tired
my biggest worry i suppose is getting more infections .
its taking time to get my head round this diagnosis but trying to be positive and fight it
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johngk
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Hello john and welcome to our very select group of bronchs!Let me just say that bronchiectasis is nothing like copd but unfortunately most GPs and many general respiratory consultants do not have enough training or experience in it so treat it as copd which in many ways is inferior to what is required for bronch. Everybody with bronch is different and it changes over time. It is possible to have mild bronchiectasis but suffer from frequent debilitating infections because they are not getting the right management whilst someone with extensive bronch like me can stay very well for a long time and lead a normal life because they have the correct drugs when needed and a regime of strict self management which stops the infections (exacerbations) from rearing their ugly heads.I am 73, have had extensive bronch since I was 3 and have had a very full life. Exercise is definitely on the cards and once you get the bronch under control you should be able to do everything that you have been doing. You do not get bronch over night. You have been living with it for some time but recently it has got the upper hand.
So firstly you need a bronch specialist. They are experts in the use of the right antibiotics in high enough doses, the right delivery system and for the adequate amount of time to really knock an exacerbation on the head. They have physios who are specialised in helping you to clear your lungs thoroughly and constantly of the fluid that the bugs love to breed in. Look at your nearest large teaching hospital for a bronch specialist. Take the name to your GP and insist on a referral. Do not take no for an answer. Then you need to get into a routine of self management. Emptying your lungs and yes- exercise.
I'm afraid that there is still so much ignorance about our condition and most bronchs will tell you that it is up to us to be proactive in our own imterests and vociferous in sourcing the right treatment.
We are here for you and I am sure that others will be along with things that I may have left out.
thanks litteporn .thats a big help to me. i will see how respiratory clinic goes and i have just found a specialist quite close to where i live..i am learning my limitations at the moment in particular to strenuous tasks..i can do them but so tired after..so i will get help or find someone to do them for me in future
it would be great to return to my active lifestyle , even if in a reduced form. i have started doing small work outs at gym without being out of breath..
for the last 3 weeks i have had very little mucus..is that normal?
apart from fatigue, my chest is still sore and aching. presume something i have to get used to
You are still exhausted because you are still suffering from badly treated infections which have completey sapped your strength. So don't feel that your current limitations are permanent. I hope that the clinic do ct,xrays and breathing tests. Hopefully the right management will help you get on top of it and back to normal.You may have some other problem alongside the bronch and tests should show this up. I only get a sore chest and persistant cough if I have a virus whereas some bronchs say that they cough a lot. Good luck with the consultant. Check that they are actually a bronch specialist before you go.
thanks again littlepom.your words are very encouraging and given me hope..in last 6 weeks i have had every scan,test and x ray possible..a mot for my body.all ok except this problem..so i hope respiratory will provide correct medication
hi.a question about fatigue..just before second infection i started feeling very tired for 10 days.i made an appointment to see a doctor but just before it i started with cough. so at the appointment the doctor presumed fatigue part of cough. between 2nd and 3rd infection the fatigue remained though i realised i could do anything active and not tire after. so mind over matter and kept going.
i am now nearing end of third infection and fatigue is up and down and of course my body is still recovering. just wondering if fatigue is part of this illness or does it vary from person to person
not sure if its coincidence but after selling our house last year we moved intio a rental property in november while looking for a new place. i had a small short cold/cough straightaway. in december i started with my first infection. we are moving out in 2 weeks into a new home and wondering if there is something i am allergic to in this rental, i shall mention it at my appointment
my cough has more or less gone and no wheezing. chest still a bit achy.so am enjoying this pleasant time!!!
Please remember that I am a patient, not a doctor, and can only speak from my many years of experience of living with bronch. What you describe as your first, second, third etc infections seem more to me to be ongoing exacerbations which are partially treated so that you feel a bit better, when actually, the bugs are still lurking in your lungs, breeding away nicely. Living with this constant low level infection is very debilitating. Your description of becoming tired 10 days before the onset of an ‘infection’ is indicative of your body’s reaction to the bug activity in your lungs which eventually becomes a full blown exacerbation. I do hope that the respiratory people whom you are seeing get a proper grip on this.
Welcome, I too have Bronchiectasis and do swim. I do crawl which I have been told is good for the chest as it makes you take deep breaths. I don’t often add to the discussion here but find it so supportive. The future is still rosey.
Hi there are devices called flutter,acapella that are very good to help also mucolyte medication which is nacsys 600mg effervescent tablets once a day and carbocysteine tablets,and a few others that gp or consultant can prescribe.I have bronchiectasis and use an acapella device every morning by blowing into it after taking nacsys to loosen the mucus its amazing how much better you feel after and I have been doing this routine for 8 yrs .I hope this helps a little bit.
A good reply fromBOxermad. There are breathing exercises which you can find on You Tube to loosen the mucus. Then you ease it out. I have always done it standing over the loo. It is a good idea to find a time every day to do it. There are others on this site who are much better than me at describing it because having been doing it since I was 6 it is second nature to me whereas they have had to learn it.
Hi 🙋♀️. I have Bronchiectasis (and other lung related and non lung related issues) I can't add much to Littlepoms wise words but just wanted to welcome you to this friendly, supportive and fun forum. Take care xxx
Welcome. I too have bronch and joining this forum has been very good for me. We encourage each other to live well. I have only had one bad infection since I was put on the right medication. We are all different and you will need to experiment to find the right regime for you. Exercise is definitely a good thing. Be patient, listen to your body and do as much as you feel able. You will gradually get your strength back. Good luck. xxx
Welcome to the forum.do read up on lung clearance techniques - it's the main stay of self care for we bronchiectasis.do ask specialist to refer u to their lung physio to tweak Yr technique.if the mucous isn't expectorated,it will get reinfected xx
Like Johngk I have had problems this year with Bronchiectasis after being properly diagnosed by a practitioner nurse @ GPs surgery..After three rounds of increasingly stronger antibiotics I have managed to lift most of the mucus issue. It returns with the onset of the winter and being indoors with heating on and going to areas of lots of people contact(shopping centres concertsetc).
Ensure you maximise your time outside in the fresh air everyday to manage your condition.
Like littlepom, it looks like I have had the condition for a number of years now as I have been affected by flu type infections every winter.. I had Pulmonary TB in 1990 leaving a weakness in my right lung and my consultant has said this has been a contributing factor in my recent issues.
Continue to exercise Johngk, but rest when u feel fatigued. Good luck with your appt.
Your nurse seems to have experience of bronch patients unlike many. However she cannot diagnose it as it can only be diagnosed by ct scan. She really should refer you to a bronch specialist at a big teaching hospital. They have so many drugs and delivery systems which can only be given by the hospital. Bronch changes all the time, especially with the onset of 'germ' season. Good resp nurses and GPs respect and are grateful for the care of a bronch specialist to help them help you.
Hi bronchiectasis is a long process after infection and it takes it out of you to recover which can be weeks to feel better.plenty of water and clearing the lungs each day are essential even if you feel not much mucus build up it can be laying in the lungs hiding.certain mucolyte medications and devices are available to help with this and hopefully the consultant will advise on your next appointment.
Welcome to this forum which I’m sure will help you along the way .. it certainly has for me
As stated a few times make sure you see a Bronchiectasis specialist & if you haven’t already it’s important to have your sputum sample analyzed to see which bugs are growing in order to get the right antibiotics ..
I have bi-basal bronchiectasis, which I think was caused by having a chest infection by a bug Staphylloccus Aureus, which rampaged through my lungs from end of March to mid November 2014. Oral AB's hardly touched it. Sorted by intravenous AB after CT scan showed I had the bronch. I've had loads of chest infections over the years, 2012 to 2018. Eighteen infections in 2017, I kept a diary. In April 2018, black mould was found in our bathroom. The floor was replaced, eradicating the mould, and since then NO chest infections, except for a stint in hospital with pneumonia and pleurisy. I think that may have caused my heart failure, which I now have. So, generally, my lung problems are not too bad these days, being controlled by medication.
I dont have a permanant cough, but maybe I am just fortunate. I do have bouts where I cough a lot in the morning, but not all the time. I do lots of brisk walking up hills etc, drink plenty of water and try to maintain a good diet, that is tough as I love my sugar. I think, personally, others maybe not share my view, but as I also have emphysema, I really try to work my lungs, do an exercise where my heart and lungs are working hard, and that makes me cough and then my breathing is so much easier. I do an exercise routine i found on youtube which is to help the lungs, it really is hard but it helps me work my lungs and helps to clear them too. Good Luck to you.
Well, as I said I don't get infections anymore, presumably due to no mould in our home. I am sure I still have bronchiectasis, but I don't have a "permanent" cough. I am on what I think is medication that suits me, and I also take antihystamine from February when the trees are issuing pollen, to the end of October when fungi are still sending out spores. I still carry my blue puffer with me at all times, but these days, it it used rarely. I do occasionally get a mucus stuck in my lungs, and if huffing doesn't shift it, I get my wife to play a hand held vibrating gun on my back, which seems to rattle it loose.
dont know if its coincidence but we have been in between properties for the last 10 months and in a rental.my problems started just after we moved in. its a new property and no evidence of any mould.my wife is ocd with cleaning and would notice if anything. but maybe i have an allergy to something. we are moving out in 2 weeks finally to our new home
You can't always see mould as it hides behind and under things. Ours was under the bath and floor tiles, and it was found when we changed the bath for a walk-in shower. The floor was completely changed. It was due to the bath drain leaking. We also found it when our Bosch washing machine finally packed up, and mould was on the wall behind that. I certainly had a lot of chest infections after moving into our present house in August 2013. There was a little lad died due to mould infection, probably a year ago.
I would suggest that black mould may be responsible for a lot of our lung problems in this country. I grew up in the age of smog. And it was also cool to smoke. Most of my family smoked, and went to their graves early due to lung disease.
You first port of call should be to listen to Littlepom! Don’t worry about the fact you had three infections- they probably weren’t treated properly and the same bug kept coming back. It’s really important to have a two week course of antibiotics. Hopefully your consultant will write to your GP and tell them this. A lot of us keep a two week rescue antibiotic at home cos these infections always start at weekends or bank holidays. Good luck. You’re in good hands on here.
That's great advice, Mooka, (Keeping a 2 week course of antibiotics at hand.
My Chest consultant and GP only prescribed one course after coughing up coloured 'Sputam'. The resultant tests showed negative, but I continued bringing up nasty stuff, so asked for another course, which I am now on. The next time I see her I will ask for the Backup 2 week course.
I have CLL as well, so I take Viru's and Chest infection very seriously, the recent diagnosis of 'Bronchectasis', just adds another worrying dimension to all the negative health stuff going on with me, at the moment.
You do have a lot going on. I hope your GP agrees as some on this forum have been refused. If that happens to you ask your consultant to put it in their letter to your GP. Sputum tests are unreliable but are great if they do provide a result. Good luck with your CLL.
thanks..istarted the week quite disillusioned and fed up with it all.but this week my infection has nearly gone and feeling better and the posts here have really helped
Hi johngk. Well I'm also a Bronchiecstasis sufferer! Have COPD too and never smoked! My Bronchiecstasis was bought on by a rare pneumonia I had in July 2017 where both my lungs collapsed and I was entubated and was in intensive care for 12 days. Being told afterwards you were less than 60 seconds from the mortuary is a big eye opener! I am on Carbocisteine 2 x 3 times a day. Also use an AerobiKa device to help shift the mucous. Under a good chest specialist now as I too have been getting through that many emergency packs it's untrue! Exercise is brilliant when you can do it! Good luck .. by the way I'm only 62 .. and fighting this big time! 💪
hi mrs bumble..from being a child up to 20 years ago i always had chest problems and an annual chest infection.then 20 years of very good health. even my few colds only lasted 24 hours|| now in last 10 months i have been ill for half of the time. hoping specialist can find the reason why this has happened.thanks for your reply and good luck to you too
Hi John, I was diagnosed with it 5 years ago, after several years of persistant chest infections. My lung capacity was down to 80%. I started regular specialist physiotherapy. St first twice a week then weekly now I'm going every 2-3 weeks. I do the suggest breathing exercises, and the bottom line is that I haven't had a single chest infection since stating the physio. My pneumologist says lung capacity above 85%, and that ongoing physio is not strictly necessary. But I know that if I stop, I will gradually forget to do the exercises. It costs me to have the physio but well worth it to avoid recurring infections
You are not alone John, and I do appreciated your concerns, it is all quite frightening initially. It will be harder for you I suspect, because of the levels your physical activities
What you say in your 'Post' resonates very much with my own Bronchial problems, which I had no idea off, until I had a full body scan regarding a completely different medical condition.
I also have CLL, and chest infections are always a threat to us, as I believe they are one of the biggest cause of deaths for CLL'rs.
The whole of 2023 so far has been one of, constant Virus's and infections of all sorts. The winter hasn't even properly started and I have had a cold, a virus, and a chest infection, and am on Antibiotics as the moment.
When I was recently diagnosed with Bronchiectasis, I was told to take 'Antibiotics if I brought up yellow or green phlegm over three days., and also to take regular 'Sputam' samples.
I too, engage in regular exercise, but in a more modest way, I suspect. I have been told by my specialist to continue, as it is good for the lungs and clearing the chest. (But you should always seek the advice of your Doctor before so doing.)
Overall, the benefits of exercise, relating to outcomes, if we ever need an operation or chemo treatment, are acknowledged by most, Medics.
I am assuming you live in America, but certainly here in the UK it is always worth being politely assertive if you feel that you are not getting the treatment or information you need.
Unfortunately sometimes it is necessary, and we should not be afraid to seek a 2nd opinion if we feel the need.,
I hope things work out well for you, and all the very best. Ron
Welcome to the forum. I was having 5 or more severe chest infections throughout the year for over 15 years. I was diagnosed with bronchiectasis and, due to the amount of infections I am now on antibiotics Monday, Wednesday and Friday for life. I also take carbocistine daily. I am 72 and have an active life as a Cultural Heritage volunteer with the Peak District National Park, so go out surveying and checking ancient monuments. Glad you are going to the respiratory clinic.
due to looking into this illness i suddenly am getting links on facebook to sprays/tablets that will improve my condition. i will wait until i have my appointment and seek advice from an expert
but has anyone found a product that helps
just seen something about lignosus, a herbal remedy , and the company is uk based.very good reviews
another is divine booth spray, based in usa. but reviews are very mixed looking at various review sites
Hi John and welcome. I am a bronchiectasis sufferer but I have basically had it since a child after having whooping cough when I was 6 months old and I am 75 now and living an active life. You have such good advice from my fellow bronchs so all I am going to add is that as far as infections are concerned you really need a brochiectasis consultant who will prescribe the correct antibioic for the particular 'bug' you have. GPs, in my experience prescribe generic antibiotics which are not as helpful. Are you putting in sputum samples to see what your particular bug is? Having a respiratory team is also invaluable. Consultant, respiratory nurse and respiratory physios are all a lifeline. As far as clearance is concerned, I would highly recommend an Aerobika device which in my case, has replaced the Flutter device. I find the Aerobika so much easier to use. Pulmonary rehabilitation is also fantastic run by respiratory physios who not only advise on exercise but are fully up to date of ever changing information. Good luck and hope this has been helpful.
Hi and thanks for your advice. i had anti biotics from gps and only partially successful. i am going to a specialist clinic next week so i hopefully will get correct anti biotic. made a note of aerobika
Hi johngk, did you have a normal xray or the HRCT scan (the latter is the only way to diagnose this condition. Also, were you prescribed monthly Rescue Packs of antibiotics to use in the event of having a flare-up or suspecting a chest infection. I had a cough for 37 years after every cold and had many of the usual xrays which showed normal! A GP noticed my persistent cough whilst in surgery for another matter and referred me to Respiratory before Lockdown. All tests were borderline normal BUT upon signing me off, a Team Doctor said she would have a word with her Superior and be in touch if needed. She rang a week later and I had an HRCT 2 days before Lockdown. Five months later I emailed my surgery and a GP looked on the hospital's records, which confirmed mild bronchiectasis (through having whooping cough years before). I had a call from Respiratory Clinic to show me breathing exercises and my GP prescribed Rescue Packs of a/b and have managed ever since, (3 years) ago. I never knew that exercise was essential for this condition. I found it helpful to read the NICE GUIDELINES for the management of Bronchiectasis.
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