Hello My name is Terry, I am all new to this so sorry if this is a bit to long.
I work as a postman so am normally fairly active as I walk around 9 miles a day, I also normally go to the gym a couple of times a week so I would say I am reasonably fit.
I started getting breathless back in early 2019, I had a few episodes so in late October/November I had 2 CT scans which resulted in being diagnosed with Bronchiectisis, however I never got the results till late Febuary 2020 which delayed any treatment.
Around mid March 2020 I was at work and I felt unwell so because of the corona virus situation I was sent home, as the days went on I got progressively worse, I was prescribed antibiotics which made me feel unwell so they were changed to another type, they seemed to work whilst I was taking them however once I stopped the breathlessness seemed to come back again, I was then prescribed pills to clear mucus and a fostair inhaler by another GP, again they worked for a while, and another GP gave me another course of antibiotics.
At the moment I am seeming to manage it, I am now in my 8th week so I am keeping my fingers crossed as it's only been the last week that it has been getting better, although having said that it comes and goes but not as bad.
I had never even heard of Bronchiectisis before I was diagnosed with it and I am hoping I can live with it to a better extent, as for someone who is normally quite active it has come as a terrible blow, and I have had some very dark days particularly when the breathlessnes comes on and the panic sets in.
Sorry if this is a bit long winded but I am just trying to give an overall picture of my situation, and would love to know if anyone has had a similar situation and how you have/are coping
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Hi Terry - welcome to our friendly site. There are quite a number here who have bronchiectasis Including myself so you will get lots of good advice.
Your fitness levels will stand you in good stead as walking regularly is good for the lungs. Drink water, eat healthily and learn how to clear your lungs. Lots of good videos on YouTube to help you with this. Look for Active Breathing Cycle - I used that for years but now have a gadget called Aerosure as it takes less energy which is helpful when not well. Clearing your lungs keeps the mucous from settling in your lungs and providing an ideal place for bugs to breed and make you unwell.
Bronchiectasis is a sneaky condition in that it is often difficult to know what kicks off an exacerbation/chest infection. In time you will recognise the symptoms of an onset and take the necessary action. Avoid any fine particles such as smoke or poor air quality or being near people with colds or coughs so that you protect yourself from infection and irritating your lungs.
When they can get going again you should ask to be referred for a pulmonary rehabilitation course. This is usually once a week over a number of weeks - mine was six weeks but it varies from place to place. Most have a two hour session with one hour on information about respiratory conditions and an hour of supervised exercise.
Also a referral to a respiratory physiotherapist would give you an expert, individual time to ensure that you are clearing your lungs and breathing in the best way possible.
Some members with bronchiectasis in the forum have had bronchiectasis since childhood and still manage to live normal lives.
Thanks so much for the introduction and the advice, I have a couple of questions relating to how I am feeling, one is I get what I can only describe as a strange sensation in the centre of my chest sometimes when breathing in, I can only describe it as a kind of tingling and it also feels like I am breathing whilst being out on a snowy winters day like a coldness in my chest, is this normal to what others have ? Something I should of added is I also suffer from acid reflux in my stomach and I have another bowl condition called Diverticulus ( I know I'm not having much luck) I am wondering if this could be causing the sensation as well with acid travelling up through my lungs which I have read can happen, I take pills for the acid reflux which obviously helps.
Does anyone have any thoughts on this please ?
Also I took a look at the Aerosure device, although I couldn't find any stockists in the UK, I looked at Amazon but they were out of stock, I did see a price of around £180 is this correct as it seems quite a lot, although if produces good results and gives good relief I guess it would be worth it
Hi Terry - Sorry, but I cannot comment on your strange sensation. Is it something that has happened since you were diagnosed with bronchiectasis? If so, I think you should ask for a telephone conversation with your GP. Diverticulitis is a wretched condition. My father had it and it made his life difficult to say the least.
It is a few years since I bought my Aerosure but it was not anything like £180 - far beyond my budget! It is not essential and the Active Breathing Cycle would do the same job. I only got it because I am so exhausted when I have an exacerbation on the go or recovering.
I think the sensation could be to do with acid getting into my lungs due to the reflux, I have spoken to my GP this morning and he has asked me to try some other pills for a month, although the ones I am on at the moment are quite strong, so I will see how it pans out.
As regards the Aerosure device is this the one you were referring too ?
As this is were I got the price from on Amazon, it does seem to be very pricey for what is essentially a tube of plastic, I am wondering if it's to do with lock down, as I have noticed a few things rocketing in price particularly to do with the lungs, and also fitness equipment weights etc, it's terrible how some retailers are taking advantage of peoples misery.
I’ve checked my Amazon purchases but I must have got it from elsewhere. Might be worth checking the Aerosure site, not certain that could be where mine came from. As I said, it is not an essential so save your money!
You have come to the right place for some excellent advice. Firstly let me reassure you that you can live comfortably with Bronchiectasis. Next GPS know next to nothing about it so you need a consultant who specialises in Bronchiectasis. It sounds like you have had an infection. Most of us would usually hand in a sputum sample to test for which bug we have so you get the right antibiotics. Other times we go through a lot of different ones. Most of us take carbocistene to thin the mucus making it easier to expel. A consultant should refer you to a physio to learn breathing exercises to help with getting rid of your mucus. In the meantime you could look at YouTube active cycle of breathing. There’s lovely people on this site who have lived with bronch for a long time and I’m sure will be along to give you some great advice. Most importantly though is to get yourself referred to a specialist. Good luck and keep coming back.
I just wanted to say many thanks for all of your comments, they are very much appreciated, and I will certainly be making regular visits here for more info and updates.
The British Lung Foundation has a really good, comprehensive booklet about bronchiectasis. It's really worth getting on their website and ordering it.
Meantime, exercise without going for the burn, healthy eating and drink plenty. Have decaff tea and coffee. They help to keep the fluid in your body so make the mucus easier to shift.
Hi Terry. I was diagnosed with Bronchiectasis almost 6 years ago. I have learned so much from people on this site about how to live with and manage my condition. A referral to physio when things start to get back to normal will help you understand clearing your lungs of that pesky mucous. Healthy diet, drinking lots of water, chest clearance techniques every day, finding the right combination of meds to control your bronchi. I am on Symbicort inhaler (I have asthma too), carbosisteine to thin the mucous, azithromycin to reduce the bugs in my lungs. I do lots of exercise which have helped strengthen my lungs and my immune system. Knowing when you are having a flare up or infection and getting the right antibiotics to treat it. My doctor has given me sputum sample bottles to hand in before I start any antibiotics which checks you are on the right ones to treat it.
Can recommend yoga or body balance as you are upside down quite a lot which can help with chest clearance. Your job will keep you fit and healthy. Susan
I was diagnosed with bronchiectasis 14 years ago. After about a year of coming to terms with it & sorting out treatment, the majority of the time I am fit and well. What helps me the most is going to the gym & exercise.
Obviously I can’t go to the gym at the moment so I am continuing to exercise at home, although the motivation is hard.
For me, the winter time is worst as if I get a cold, there is a good chance I will get a chest infection - although not always. As others have said see if you can get a referral to a good respiratory physiotherapist as they will teach you ways of managing exacerbations.
Hello Terry.i have bronchiectasis too.id reiterate all advice given.acid reflux is treatable so do ring dr.its common 4us to have it.as soon as u think yr srarting wth a cold,sore throat,cough do ring dr for treatment - chest infections cause inflsmmation and further damage to airways so its extremely important to get treatment as early as possible frm hereon in.as for aerobika,if u get referral to lung physio,they may provide u with one,worth asking.all the best x
Hi, I have Bronch so I understand how shocked you must feel. Don't despair you will learn to understand you body and know how to help yourself. I think you may be infected. Usually you would need to do a sample for the lab but corona has stopped this. If you have emergency meds start taking them, if you don't, ring your gp asap and ask for assistance. It could also be that your inhaler is the wrong one for you. Good luck and take care, Maximonkey
And just a big thankyou to everyone for welcoming me here and your good advice, as I said originally I had some very dark days over the last few weeks when I originally found out I had this condition, particularly at first when I thought it was covid19 as did the GPs I guess it's because the diagnosis came around the same time as the virus kicked off so everyone was unsure, however I am starting to come to terms with it and hopefully in time and with the correct treatment I will be able to manage it ok.
One other thing I wanted to ask is how long do these exacerbations last ? as for me it's been a number of weeks 6/7 albeit up and down with good days and bad days, I was wondering is this normal or is it probably because it's just started, and is this something I should expect going forward ? or will it be just a matter of days, I appreciate everyone is different though and it may affect people differently.
Also has anyone tried any herbal remedies ? I was told about something called sea moss, which I purchased from Amazon, it's to early to say if it's helping as it's only been a few days, so I don't know if it's just coincidence that I feel better than say the last couple of weeks.
Hi Terry. When I was first diagnosed it was after a hospital stay with pneumonia and pleurisy. It took weeks to recover and felt like infection kept on recurring. The meds can take a wee while to settle your bronchi, especially Azythromycin, an antibiotic that I take Monday, Wednesday, Friday. It works by keeping the bacteria in my lungs from growing. I was off work for almost 6 months and went back part-time. I get really tired spells due to my lungs and part-time working helps with that too. Any flare ups I usually get are when I’ve had a cold and it heads to my lungs. Attacking it aggressively with antibiotics for 14 days usually settles it back down, but you need to get the right ones. Hope this helps. Susan
How do people here get on with travelling ? i.e. flights abroad, do you take any extra precaution's ? as I'm guessing breathing in recycled air isn't the best start to a holiday, and what if you have a flareup whilst you are away, I'm guessing declaring Bronchiectasis on an insurance form isn't cheap either.
Hi, I guess it depends how bad your bronchiectasis is. I went to Australia for 3 weeks in February with no problems. I always ensure I keep my medication on me rather than in the suitcase just in case it gets lost.
Insurance can be a problem but I tend to look around on sites that cater for medical conditions.
For me the most frustrating questions about bronchiectadis is that travel insurance questions seems to assume you need oxygen & I don’t. I’m probably fitter now than I was before I was diagnosed.
There are some good deals around, well there were, not sure what the situation is now, if you shop around
Hi Terry, firstly I do not do anything special when flying. I have only once been unlucky enough to sit next to a woman who coughed the whole way, fortunately she must have had copd or bronch because I was not ill after the flight. As to the insurance question, I have asthma as well as other comp laints so my insurance is high. We take our annual insurance for us both and we usually pay around £500. Yes it sounds high but we are both over 70 and we travel 4 or 5 times per year, so we feel it is worth it. It is always an option to not be covered for certain complaints. It is up to the individual. I always have my emergency meds with me and of course the Azithromycin which I take 3 times per week. I hope this helps. Take care, Maximonkey
I was diagnosed with bronchiectasis 2 years ago now . Like you, I'd never heard of it. My symptoms were over a year of continuous chest infections, weight loss, pnemonia. It was a long time before I was referred to a hospital!
I am not on any treatment at the moment. I do have access to emergency antibiotics and the local Respiratory Team will visit me if I think I have a chest infection. I've not had one for over a year now. No idea what this is down to but hope it stays this way.
I also got a device called an Acapella Choice from the GP, as recommended by the Respiratory Team. This is used with the breathing cycle to clear mucus from the lungs. I was using it several times a day at first but since I've not been ill I dont use it as there is no mucus there.
I also have acid reflux. I was diagnosed with asthma 30 years ago but since the bronchiectasis diagnosis I dont think I've got asthma now. I dont use any inhalors. Not sure what has changed, all very odd!
Your case certainly sounds severe, glad you've got it under control now though, that does sound strange about the asthma though, quite a number of years ago I was given a blue inhaler for breathlessness, although nothing was actually diagnosed, so I stopped using it and never had any further problems, until now of course which is some 18 years later, I also get hay fever which I'm guessing won't help now. However if yours has gone that can only be a bonus, I have some good days and bad days, i.e. like today I got up feeling fine no problems, about 10.30 I sat at my computer after about 40 minutes I started to feel unwell, breathless and incredibly tired, I'm convinced it makes a difference how your positioned sometimes, I started trying to sleep on my front which is helping, but I can only last like that for a couple of hours, I would love a couple of weeks of feeling good again, here's hoping.
they said it had gone? I was told it was lifelong. Everything I've read points to that too. However, I have not been ill for over a year now. I was wondering if I'd been misdiagnosed in the first place. I am no longer seeing the chest specialist as I stopped getting the chest infections. I'm amazed to read that it can just go away
Sorry to jump on your post Terry, I have responded to you as above.
I'm more inclined to think that mine is very mild, I am not on any meds, never been offered any. Plus I've been well for well over a year. I did go through a very bad spell for a year but even then it took ages to get diagnosed.
I had the brown preventer inhalor as well as the blue reliever. It's all very strange.
I do a lot of walking so hopefully that keeps me fit.
I don't think my GP would be able to help. It would need another CT scan to determine whether the problem is still there. If it isn't I doubt that it was ever bronchiectasis. It wouldn't be the first time I've been misdiagnosed with something!
And apparently having to many CT scans is not good, I had 2 in the space of 3 months last year, that's how they diagnosed the Bronchiectasis, however I was told you shouldn't have more than 3 in your lifetime as they are quite a blast of radiation, although it's also said the older you are the better because it takes about 18 years for any side effects, I guess the reasoning is if you had one in your 60s you would probably be dead by the time any side effects started to occur 🤔
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