What can I expect?: Hi all, I was... - Lung Conditions C...

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What can I expect?

VickiFo profile image
17 Replies

Hi all, I was diagnosed with bronchiectasis a few weeks ago. Have been sick ever since. I was wondering what is normal for bronciectasis. Will I constantly have phlegm or does it go away when I'm healthy? Been a long cold winter here. Hoping I'll feel much better when the warm weather arrives.

Thanks,

Vicki.

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VickiFo profile image
VickiFo
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17 Replies
Cateran profile image
Cateran

Hello Vicki, I have bronchiectasis and the sputum or phlegm is a constant daily reminder of what your airways are coping with when they want to expel the gunk that builds up in your lungs. I do not know how much you have been told at this stage nor how you were diagnosed with bronchiectasis. Did your GP set up a visit to your local hospital, with a specialist involved at any stage? Did you have a CT scan, blood tests, sputum specimens, peak flow tests? For any proper diagnosis of bronchiectasis you must follow this route before they can be sure that you do have the condition. If that was the case then I can recommend that you follow certain procedures of therapy, but only after we get to know the degree of severity of your particular case. You mentioned a long cold winter, so what part of the UK or elsewhere are you, and how far are you from a respiratory clinic?

I am a patient not a health professional, and I draw my awareness and support as a patient from a bronchiectasis support group where I live in Tayside, Scotland. The beauty of this forum is that I can share my experiences with you if you wish, trying to help you with what you are going through right now. If you want to share your condition, so to speak, then I and I am sure others here, will support you.

Good luck,

Terry.

VickiFo profile image
VickiFo in reply toCateran

Hi Terry, thanks for that. I'm in SW Western Australia. I was diagnosed by a CT. I see a lung specialist in Nov. There is no respiratory clinic here. Don't know if we have them in Australia. I have mild bronciectasis. A virus with a persistent cough is going around the SW at present. That's what I have also. Haven't had any other tests yet.

Thanks,

Vicki

Cateran profile image
Cateran in reply toVickiFo

Hello Vicki, I have family in Oz, with two wonderful Australian grandchildren. You live in a beautiful country. As you can read from the other replies Vicki, we are a very supportive bunch here. I imagine that any decent size hospital, such as a general hospital, particularly if you underwent a CT scan, would have a respiratory department or clinic. I appreciate that the private medicine system in Australia is a tad different than in the UK, but the structures are very much the same, so you should have access to a respiratory specialist consultant. The CHSS Living With Bronchiectasis, recommended by Hanne is the Bible for bronchiectasis folk, so keep it close at all times. Is your local community a small or decent sized town? Perhaps you could look for any patient led and supported lung group, such as with COPD or Breathe Easy groups. These groups frequently have bronchiectasis members with whom you could discuss things, and there is always this forum and us to keep you informed.

Do stick around.

cofdrop-UK profile image
cofdrop-UK

Hi Vicki

A very warm welcome to you although sorry you have bronchiectasis. It must have been a shock for you. I haven't experienced that shock as I have had it since babyhood.

I assume as you have a diagnosis you will have had a ct scan. I also hope you have a respiratory consultant/pulmonologist, especial one with a special interest in cf/non cf bronchiectasis.

Like Terry I produce lots of gunk. We are all different but most people with bronchiectasis have mucus which must be expelled. Respiratory physio and excercise is the best thing we can do for ourselves, as if the gunk is left to pool in our lungs it is a breeding ground for bugs. Your doctor should refer you to a resp physio to teach you and then you will have to do it yourself on a regular basis.

As Terry says if you let us know where you are at with your bronchiectasis, or you want to know something specific, someone will be along to help you.

Please know there is life with bronchiectasis!

love cx

bayleyray-uk profile image
bayleyray-uk

Welcome to the site Vicki,

Wholeheartedly agree with what Terry and Cofdrop have written. It's a gunky old disease and can be a bit mucky at times. Only thing I can suggest is that give yourself permission to take it easy when you feel under the weather. I am just about getting my family to realise that when I say I am tired I really mean it and not that I want to get out of doing something (usually for one of them).

Sue

Bagpuss1972 profile image
Bagpuss1972

Hi Vicky I can't offer any advice as I have different conditions to yourself but wanted to say hello and welcome to the forum x

Lhell profile image
Lhell

Hello Vicky, I'm new & this is my first post. I've been diagnosed 6 years with bronc and I only have mucus when I have an infection. So fingers crossed it could be the same for you

I have bronchiectasis too Vicki (over 20years now) and just want to back up the others by saying, we are here for you when you need us. There are some really expert patients on this site with loads of experience and information at their fingertips so do keep posting. I'm sure you'll feel better when your weather improves. Personally I have sputum all year round, but you might be lucky. I think we all feel better when it's sunny and warm! I think this booklet is a very helpful introduction to what bronchiectasis is all about

chss.org.uk/documents/2013/...

VickiFo profile image
VickiFo in reply to

Thanks for the booklet. 👍

Linda8p profile image
Linda8p

Hi vicky unfortunately you will always have a cough and phlegm. I suffer more in spring? Don't know if it's any good but physiotherapy helps and you get some relief for a short time. I find it embarrassing when we're out in company and I start to cough it sounds awful. But people are usually more worried about you than anything else. Sorry I can't be more positive. Sending hugs.

Donna1966 profile image
Donna1966

HI. I have bronchiectasis and was diagnosed a few weeks ago. I had a cough for over a year and didn't bother going to the doctors about it. I also had phlegm constantly. I thought that if i went to the doctors they would say you have had a cold it will go no antibiotics. Not that this is the cause of it as I was told ive had it for a long time. I have not had any chest infections only when I was 24 when I had pneumonia. I took antibiotics 12 weeks ago, i don't have a cough although i have been told it will come back, only slight amounts of phlegm which i am struggling on a daily basis to cough up. I exercise which helps and have been told to drink lots of water. At first I panicked and was very upset but think if you have positive outlook and manage it well everything will be fine. Donna

pnewcombe profile image
pnewcombe

I was diagnosed about a month a go. I'm finding things difficult. I'm trying to do everything the same work,home ect whilst waiting for physio I'm so tired and I feel so emotional. I've been told I only have mild bronchiectasis but I also have asthma. I'm currently taking antibiotics, thinners and my inhaler and I'm not sure if any of them are helping don't feel like I know my body at all anymore. I'm 37 and I work with young children. How many people my age have the same condition I'm only asking because my GP keeps saying most patients she sees with the condition are in their 60s

Donna1966 profile image
Donna1966 in reply topnewcombe

I was also diagnosed a few weeks ago with mild bronchiectasis. Very emotional like you, work with children, have children, tired etc. I was advised to give up my job which i was devastated about but you have to weigh up whats best for you.

I am just coming to terms with this like most people i had never heard of bronchiectasis. I have had lung function test, mannitol blood tests etc and still have other tests booked in. Im 49 and apparently i have had it a while so im glad it is only mild and not more severe. I think if you manage it well it will not progress any further and your life wil be as normal as it can be with this condition.

Stay positive .. Donna

pnewcombe profile image
pnewcombe in reply toDonna1966

Thanks Donna other people just don't seem to understand I'm determined to carry on I'm hopping physiotherapy will make things easier.

Donna1966 profile image
Donna1966 in reply topnewcombe

If you ever want to chat about it just email me. Donna

phoenix777 profile image
phoenix777

As you will have already guess from reading the replies everybody is different and finds their own of dealing with their condition. I find that doing any kind of physio is unproductive in the morning so tend to do mine about 2o'clock. I've never understood why that should be. I find postural drainage works best for me which basically means me lying on cushions on the floor with my legs in the air. I do sometimes wonder how I'll cope when I get older (I'm 62 ). When I was working full time I did not always do my physio as I felt too tired and there was always something more interesting to do. I would urge you not to follow that path. I regret not taking my condition as seriously as I should have. I was never aware of how important it is. My mucus has been green for as long as I can remember. I was told that was normal for me. But more recently after a bout of coughing up blood and feeling vaguely unwell (and a ct scan showing lots of things going on) I had a bronchial wash. That brought up lots of nasty bugs which had never appeared on sputum tests. So I do wonder how long I have been walking around with these bugs in my lungs. I did read somewhere that it can be difficult for normal sputum tests to pick up bugs from middle aged women with brx so I don't know whether you fit into that category. The good news is that for most of the time I feel and look well but it is constant hard work eating healthily drinking lots of water doing some exercise and trying to keep positive. Hope at least some of this is helpful

Susan

Louisiana profile image
Louisiana

I was diagnosed with Emphysema years ago, and every time I had severe coughing, I would go onto steroids and anti biotics to handle the "infection". My Consultant then diagnosed that I also have Bronchiectasis as well and that is what is causing most of the coughing...so, now I don't go rushing to the Nurse to have my chest infection sorted. Obviously I get infections sometimes, but nothing like before. The coughing gets your mucus up which you must do..a Flutter helps. There are days when I loathe and get fed up with the coughing but I don't want to get infections. This probably sounds muddled, but just letting you know how it works for me....I am at the stage where I don't go out that much, as I hate the coughing, bringing up muck, etc., around people.....only with close friends. when I am out, and I start coughing, I always reassure people next to me that I am not contagious!! :) :) Good luck to you :)

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