Hi all, my name is Ian, I'm 56 years old and live in Reading Berkshire.
Having had a cough since before Christmas, (over 4 months), and after several trips to the doctors where I was given antibiotics I was finally diagnosed last week with Bronchiectasis. Like most people I suspect I had never heard of it before and am only now starting to have some understanding of what it's all about. I am still awaiting the results of sputum and further blood tests to, as I understand it, help with choosing the correct antibiotics. I am also awaiting respiratory physio which I am hoping will come soon.
Would be great to chat with people who have the same condition just to share experiences.
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IanW1962
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Welcome to the forum. I hve bronchiectasis, I also have brochiolitis obliterans.
For information about the bronchiectasis have you seen BFL booklet about the condition? It's well written and very informative.
Pulmonary rehab will really help (though when you first start it will seem like madness, exercising when you are breathless and feel so rough).
Once they sort out the most suitable antibiotics for you you will start to feel better.
Do contact BLF to find if there is a Breathe Easy support group near you. The groups are amazing. Great help with coping with a lung condition but more than that a safe place to meet some lovely people. I go to a group in Chineham (I live in Basingstoke). We have a variety of guest speakers, outings and a plate party.
Depending how extensive your bronchiectasis is you may have to make some adjustments to your lifestyle, slow down a bit but there's plenty you can still do. BLF do other leaflets on advice about living with breathlessness.
Keep in touch to let us know how you are getting on xx
Thank you, I have the BLF leaflet which is very informative and it was what pointed me in the direction of this website.
It's very early days for me at the moment as I was admitted to hospital with low oxygen levels only last week and since then I have had X-rays, blood tests and a CT scan which have arrived at this diagnosis. I am a little breathless and am coughing quite a lot but not bringing up too much phlegm. I'm hoping the physio will help me with breathing techniques etc.
It would be great to stay in touch as like I say this is all very new to me.....thank you.
Ian, June here again, noticed you'd said you cough up but cannot get the gunge out well enough. Have you tried Honey and lemon hot drinks instead of tea or coffee. This does word. if you prefer a spoonful of honey in the mornings does help you get the gunge up too. Another tip I got was half pind of water 4-6 times a day helps thin the phlem down so you can cough it up. good luck ...nothing ventured nothing gained as they say eh!.
Thank you. The amount of phlegm I bring up seems to vary day by day. The sputum samples I handed in last week were quite clear and white whereas now they are green again so I'm thinking I may have to supply more. The sooner I hear the better I will feel. X
Off topic just for a second wheezyof. I used to live in Basingstoke in Penrith Road and my daughter was born there. Happy to say, no offence, I came back to Yorkshire some time ago.
Hello IanW1962 and welcome to the forum. As wheezyof says, the BLF produce some excellent leaflets and you will find a selection here that you can read whilst awaiting replies:
A very warm welcome to you, although I am sorry to hear you have bronchiectasis. I was diagnosed with bronchiectasis as a baby in 1948, and along with many others here who have had bronch since childhood have, with good management of my condition, done all the normal stuff we expect to do.
Glad you have been referred to a respiratory physio, as learning lung clearance yourself is the most important thing we can do for ourselves. I assume you are seeing a respiratory consultant with a special interest in cf/non cf bronchiectasis. If not, you are in an ideal spot to ask to be referred to the Royal Brompton in London.
Take a look at this link from the European Respiratory Society. It covers basic informtion but we were asked if we thought the interviews between clinician to clinition should be included, and we were in agreement. They may not make much sense to you now but will be useful to dip into later.
As I say it's very early days yet and although i saw a respiratory doctor at the Royal Berks on Monday I am now waiting to be contacted re' the next step. I am hoping i will hear soon as at the moment I have not been prescribed anything but then i think that will come when the samples of sputum and blood have been checked.
It's very reassuring to hear that you've managed to live with the condition for so long, thank you for that. Would be great to stay in touch as I'm sure I should have many questions although I'm not sure what they are at the moment if that makes sense.
Yes that makes lots of sense Ian. One thing we learn quite early on with this conditon is that we have to be our own advocates, especially when it comes to GPs.
I am sure once you have learn’t physio techniques and have a management plan and the right medication, you will feel more confident about life with bronch.
Unless you have an active infection keeping active is a good thing, eating healthily, keeping away from folks with coughs and colds - all the usual common sense stuff.
Please let us know how you get on.
As you say most people have never heard of it, but the folks on here totally ‘get it’.
I found this info from cof-drop incredibly helpful, including the clinicians discussing with each other. Reassuring somehow to realise that all these brilliant, dedicated people are working so hard to understand our complex lungs.
The consultants involved are indeed very proactive. As I say we were asked if we thought their interviews should be included in the Patient Priorities. People with brochiectasis, as with any other condition are diverse and some will want to know the basic information right through to those who want to read scientific papers. It was therefore decided that there should be an explanation prior to the interviews and then folks could decide for themselves.
It’s really nice to get such positive feedback Robin, thank you. There is a very interesting interview I think you and some others will find interesting between Prof Wilson and Dr. Aliberti. I will put the link up on a new thread. I’ve put it on in the past I believe but there are a lot who will not have seen it.
I was diagnosed in 1995 with bronchiectasis and up until recently have carried on as usual, although with a few ups and downs over the years, mainly having to have ambulatory oxygen since 2010 because of very low oxygen levels. However, life does go on albeit at a slightly slower pace and more reliance on inhalers, antibiotics etc. I have done 2/3 pulmonary rehab programmes and found these to be really good in helping to manage fitness levels etc and meeting others having similar problems really does help. Hope all goes well for you.
Hi, this is the first i have heard of pulmonary rehab although it makes total sense. Thinking about it the doctor said one of the things they are testing is my potassium levels as it can be a cause of pulmonary problems. I'm afraid I have suffered rather from information overload in the past week and am still piecing everything together.
Thank you for getting in touch, I will keep you posted.
Hi and glad you've found us! The site is like a family and lots of members talk openly about their illnesses, medications ,problems etc. If you prefer to read up on your specific illness that's totally fine to. We also go a tad on the light hearted side- talking about our interests,pets ,places we've visited. However it's a "real site" and by this I mean we also moan,groan,complain and try to make sense of things- so you will find your feet no doubt and get to know us. I'm in Surrey not too far from you in the next County but we have folk from all over the world checking in. Make yourself at home and again,welcome!
Welcome to the group, im pretty new here and it's the best thing I ever joined. Doctors help us but they don't understand as they don't experience what we have they only read about our conditions, here it's people who experience lung conditions every day, we say it as it is. So how do you feel being diagnosed with this? You sound pretty relaxed. Was it only a long lasting cough which brought you to the doctors? Any other signs you had a lung condition?
Hi, if I sound relaxed its probably because I had spent 5 days or so convinced I had fibrosis which was all it said on my discharge note from my first visit to the hospital. As you can imagine I had convinced myself my days were numbered so after my CT scan being told it's Bronchiectasis actually came as an initial relief.
I have suffered with breathlessness for a good ten years now I think about it, my concern now is the level of breathlessness since having this chest infection.
I am taking great reassurance and comfort from all the comments I have received and am now just hoping I get my physio appointment soon.
Hi Ian. Not sure if you know this, but another name for Bronchiectasis is Non-Cystic Fibrosis.
So in a way, I’m afraid you still have. It’s just a different form. I’m sorry.
I too have Bronchiectasis, but also COPD and Asthma. So for me, I struggle, but I try and live as normal a life as possible. Try not to let it all beat me.
You mentioned anti-biotics. I’m on Azithromycin. One tablet three times a week on Mondays, Wednesdays and Fridays. Every week. And I’ve found this has helped me a great deal. Obviously I’m also on other meds for the other two lung conditions as well, but a mixture of the lot has helped with less infections, less flare ups.
Whilst Bronchiectasis is a chronic long term condition, you do live longer with it, it’s easier to manage and it doesn’t necessarily mean the end.
Your situation sounds similar to mine. I was diagnosed with bronchiectasis last August aged 54, having had persistent cough and "my lungs make gunk" for months. It made sense of years of unexplained symptoms (always needing to clear my throat, among others).
Learning to use Active Cycle Breathing technique to clear the gunk out of my lungs has made the most difference, and using "Flutter" device (little gizmo made of plastic and a ball bearing, prescribed after recommendation by respiratory physio) helps this process too. I do both each day.
I also take Carbocisteine (prescribed) and high dose vitamin D and echinacea, and probiotics to strengthen my immune system. Exercise is important (which I don't always do enough of), and eating well, and also drinking lots of water helps.
I have not had a chest infection since the one that finally got me on the road to my diagnosis. This surprises me - I have always been prone to them, and now I know why.
Something I've learn from this community and all the 'bronch' experts here is that we are all individual, bronchiectasis is very variable, and we each find our own combination of 'what works' to live with it. But we do live with it, and usually we live well.
Thank you your situation does indeed sound similar to mine. I too have spent years constantly clearing my throat, but thought nothing of it. I have also been quite "wheezy" for a good many years if I over exert myself.
I am keen to get on with my physio to learn some techniques with breathing coughing etc.At the moment all I have been given is tablets to reduce acid reflux. I am finding that I am most breathless for the first hour or two when I get up in the morning. Also my back tends to ache after I've been standing up for a while.
I hope like you I will avoid future chest infections because that was what knocked me off my feet recently. Although the good thing was it finally sparked the doctors into action.
Hello Ian, sorry your'e unwell with the chest bronchiectasis things. It's a nightmare trying to keep yourself from thinking all sorts of things eh! I too suffer from emphysema and bronchiectasis so I know you will be a bit apprehensive about this illness. I don't know if your'e a smoker but if you are it's a good idea to stop now as this can and does affect your bronchiectasis. I stopped smoking after I was diagnosed .... 5 years now. I am 66 years of age and I also have rheumatoid arthritis and this doesn't help me either. It's okay if you do the breathing exercises they advise you to do to strengthen your breathing muscles. It nice you joined as there are so many helpful people in this group. All the best!
The annoying thing is that I have never actually smoked a cigarette my entire life....although I suppose I suffered a lot of passive smoking in my youth.
Welcome ian, I have bronchiectasis and asthma, all i can add is keep active and try to keep your lungs clear. I was diagnosed with bronchiectasis about 8 years ago, I think I had it much longer, just had very stubborn doctor who wouldn't refer me to a consultant. A new doctor took over surgery and referred me to a lovely consultant.
Hi Ian and welcome, you will be so glad to have found this site as the information you gain will be invaluable and the members are so friendly. I was diagnosed with brochiectasis recently after being treated for asthma for years, which I didnt have. I now use mucodyne which helps to thin the mucus and the huff method to help clear the lungs. Irene x
I too am new to this. I was coughing over Christmas and still are. I had X-ray then CTScan which showed bronchiectasis. The GP told me it will be at least 2 months before I can see a consultant so I am paying to see him 9th may I am coughing up phlegm but mainly when I walk about. I am ok while sat and laying. The main thing i want is my life back I have been sitting a lot and not moving incase I coughed now I am walking round the garden and up the path going a little further each day
Thats a long time. I can't fault the treatment I've received so far. I was taken in to hospital on the Wednesday with low oxygen levels, they did X-ray and blood tests while I was there. I had a CT scan on the Friday and saw the respiratory consultant on the Monday. Although everything has come to a bit of a standstill now.
All I know is that coughing up phlegm is a good thing and you need to be doing it and not avoiding it.
Wraps I was sorted quicker because I was hospitalised, (just a guess).
I had low oxygen in January but the DR just gave me antibiotics and told me to go for a chest X-ray. I got a phone call from DR saying the X-ray showed something on my left lung. So I was told to wait 6 weeks and repeat the X-ray which I did. Was called by DR told it was still there so I needed a CT scan. 4 weeks later I had CT scan 4 weeks later having pestered the DR I was told I had bronchiectasis and he couldn't help me I needed to see the consultant and it would take about 8 weeks for an appointment. If you add it all up it's been going on since January. I am now paying to see the consultant because I need to get my life back. I already have diverticula disease and arthritis which make me not very mobile but coughing all the time is worse. Thank you for listening
Sorry to hear that, it's crazy that they aren't acting quicker for you. Perhaps they think if it's not going to kill you then it's not important! Which is ridiculous, I don't think they realise all the waiting is extra time to worry and you can start imagining all sorts which only adds to your stress levels.
I wish I could offer some positive advice but unfortunately it's all very new to me at he moment. Good luck with it though and let me know how you get on.
Actually I don't rate your doctor very much, my oxygen levels were 89% and had my wife not been with me to take me to the hospital she was going to get me an ambulance. I should say that she mentioned the crackling sound on my lungs was as bad as she had heard in some time too, so I'm guessing that added to the urgency.
Good luck with your diagnosis, Ian. IF your sputum analysis comes back negative, as mine did, ask your MD about an Auto Immune Disorder called Cryptogenic Organizing Pneumonia, COP, which I have. It is a genetic inflammation of the Bronchioles, which presents like pneumonia, beginning in one’s 50’s or 60’s. It is not pneumonia, but you can catch Community Pneumonia as a secondary infection, too.
Long-term (24 weeks?) of Prednisone is my therapy, which is very effective. After clearing my chest of most excess mucus in mere days, coughing up huge plugs, no more coughing. I feel ten years younger!
If your direct relative has had an AID, you are more likely to have one, although it might be a different one. My mother had Shogren’s Syndrome, for example.
Hi Ian And welcome. I was diagnosed with bronch last September after coughing for about 5 years and then getting chest infection after infection. I am currently taking Azithromycin (antibiotic) three times a week, carbocistiene and vit D as well as Fostair inhaler and salbutamol when required. I have had two infections since Jan and not feeling 'normal' although my oxygen us fine . I have been waiting for PR since last September so hopefully won't have to wait much longer . I hope you find the right course of treatment for you and get your pulmonary rehab soon x
Hi, Ian welcome to the group. I am sure you will be fine once all the tests are done and they are able to give you medication for your condition. I was diagnosed with COPD May 17 I know it is not the same as your diagnosis just wanted to say hi and to be kind to yourself and just do what needs to be done to help yourself manage your condition. All the best Jo xx
Just a quick update. Still awaiting my sputum sample results, but having spoken to the hospital they say it takes several weeks as they have to grow a culture to see what bacteria is present. Blood tests came back clear so actually still no further forward .
Having said that I have been taking good care of myself, taking slow release vitamin C, vitamin D and echinacea tablets along with the prescribed tablets to reduce acid reflux. Another thing I have found to have amazing medical benefits is good old fashioned water! I take a litre bottle with me everywhere getting through about 4 litres or so a day. I have also adopted a healthier diet all of which has resulted in me feeling well enough to return to work and get back to a relatively normal life (although I am taking things very steady). I am still coughing all day long and my chest is quite tight and wheezy in the morning for the first hour or so, but I am feeling better than I was. Although I am having to take it a lot easier than I used to my hope is that if I can maintain this level then it's something I can live with.
Still waiting for the respiratory physio which I'm hoping will help me further. I chased it along with the hospital and they said there is a delay and it may be a while.
The other thing they have mentioned is that I have to have another scan in a couple of months to check on three small nodules they found on my left lung, but I have been assured that is quite normal and nothing to worry about .
I suppose the real test, and the thing that worries me the most, is how I will be if and when I catch another flu type bug. I feel like I have a constant minor cold, you know "snotty" nose and a deeper voice, but no aches and pains. Anyway thought I would give an update and although I'm actually no further forward I am feeling more positive.....just wish my appointments and results would hurry up!
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