hi, I am new to bronchiectasis any in... - British Lung Foun...

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hi, I am new to bronchiectasis any information will be welcome

petchar
petchar

hi, I am new to this illness , I was diagnosed 2 years ago , I had a slight cough that would not go I had no other trouble until 4 months ago when I could feel pain in my back when I lifted any thing heavy , then got the bad cold most people have had over xmas, , now I am on antibiotics co- amoxiclan for 2 weeks and nearly finished the dose but feel very tired 4 days to go and I don't think its going to work , it goes away and feel realy good for a while then the sneezes and runny nose come on and it back to feeling rough I don't have any pains or breathlessness but feel rough and lose interest in all things , I was wondering if it is how things are with this complaint

13 Replies
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For the runny nose try using a sinus rinse daily, Neilmed sinus rinse is wonderful u can get it on Amazon or any chemist you'll need the starter kit with the bottle in it.

I believe with your condition you should be seeing a respiratory specialist and physio regularly and be doing breathing exercises twice daily to clear the lungs. A device called an Acapella helps when you use that to breathe in to clear the lungs. A specialist should be going through all this with you. Can you see your doctor and ask to be refereed. In the meantime google the active cycle of breathing as lots of videos on you tube to help.

BLF have good advice too on their website.

petchar
petchar in reply to Shancock

thank you Shancock for your advise I will get the sinus rinse , I do not have any breathing problems and have no wheezing , the doctor said I have a crackle at the bottom of my lungs when he used the stethoscope . I have had a xray and blood test both were ok ,

With Bronchiectasis the problem is that your airways widen, and little pockets appear - instead of a straight tube like this: <==========> your airways become more like: <==^====^====^==^==>

These little pockets collect and build up mucus and all other sorts of nasty stuff.

When you see a respiratory specialist, they will explain this in more detail, and go through with you various breathing exercises that you will need to do to help clear these pockets of mucus and keep your airways clear. The clearer they are, they less chance you’ll have of getting an infection.

And trust me, from someone who suffers not only from Bronchiectasis but Asthma AND COPD, you really don’t want to get an infection!

Get yourself an appointment with the doctor, and get yourself referred to a respiratory specialist. You’ll need one from here on out.

Best of luck,

petchar
petchar in reply to Symes

Thanks Symes, when the ab finish Monday I will see my doctor,

Hello petchar and a very warm welcome to our forum. I suffer with bronchiectusis and up until I was put on Carbasisteen capsules, it was difficult to cough up this sticky substance. If I were you I would see your G.P about it. It's good that you don't have breathing problems. I wish you well, and can you please let us know how you get on? I hope you feel better soon✋️😊

Hi petchar and a very warm welcome to you, although sorry for your health issues. I am another person who has had bronchiectasis since I was a baby and asthma later on in life.

I am assuming since you don’t appear to have a respiratory consultant that your GP arranged for you to have a ct scan for you to be diagnosed. Brownie points for that but I can’t understand why s/he has not referred you to a consultant. I would suggest you find a respiratory consultant with a special interest in cf/bronchiectasis (believe me it makes a difference). You can look online at your local hospital, or if you let us know of a large city you have access to we might be able to point you in the right direction. Then you can ask the GP to refer you to the consultant of your choice.

The consultant would most likely arrange spirometry, full lung function test, arrange for a sweat test to eliminate cf, refer you to a respiratory physiotherapist, who will teach you lung clearance methods and PEP gadgets such as the flutter and acapella (which both work by resistance and vibrating when you exhale) and possibly referral to an immunologist. Maybe not all on the first visit.

I am putting up a link. There is a lot in here from basic to talks from clinicians to clinicians. Just dip into it as you please.

europeanlunginfo.org/bronch...

With regard to your not feeling the co-amoxiclav has done the trick, you might want to ask your GP to send in a sample. This way you and the docs will know what you are growing and what the bacteria is sensitive to.

Any questions just ask - there will always be someone around to help.

Good luck

Love cx

petchar
petchar in reply to cofdrop-UK

Wow, Loads of info thanks everybody , I did see a consultant 2 years ago and had lung function tests , and he diagnosed this Bronc , when I went back to see my doctor he was on leave so I saw a locam she said I am clear and if I take ab I could be on them for life I didn't want that , so I just carried on only having a slight cough it was when I got a real bad cold 4 month ago that I went to see my doctor and thing seem to get worse , I feel fine for a while and then it takes over like a wave of depression and unwell feeling , and then it goes away for a while with a bunged up nose but only coughing up a small amount of white stuff , thanks for listening everybody . I will take notice of your advise

cofdrop-UK
cofdrop-UK in reply to petchar

Some GPs are woefully uninformed when it comes to bronchiectasis, although I would suggest when the locam suggested you were clear, s/he would be talking about active infection. If you have been diagnosed with brichiectasis, then you have bronchiectasis. Locam is also incorrect that having bronchiectasis will automatically mean you would be on constant abs for life. Whilst it is true many people who are severely colonised with a bacteria called pseudomonas and some who have copious amounts normally of discoloured mucus and frequent infections will nebulise antibiotics daily, this does not apply to all people with bronchiectasis. Many people with lung conditions also take prophylactic antibiotics, the most usual being Azithromycin 1Mon, 1Wed and 1Fri and occasionally 1 a day. Many people find them beneficial and find they have far fewer infections which require high dose, lengthy abs. Unfortunately, although my bronch is severe and my norm is copious discoloured mucus, I am intolerant to the nebulised abs and Azithromycin.

If it were my I would want to be referred to a different consultant. If your condition is mild, then you may just be reviewed once a year, but as your symptoms appear to have worsened, I would suggest a referral is the way to go.

Cx

petchar
petchar in reply to cofdrop-UK

yes cofdrop-uk . I agree , the plan was after this dose of co- amox, the infection should have gone , so after that I have some azithromysin like you say 1 mon 1wed 1fri , I still have 3 days to go on co-amox but no sign of easing so Monday I will see the doc again

Hi.Yes my bronchiectasis symptoms are similar. I also think you should be under a respiratory consultant. As I was getting endless chest infections and several spells of pneumonia I have tried several inhalers and treatments. I am currently taking the purple Seratide 125g (no low dose antibiotics ) and previously took 250g (with low dose antibiotics)

Co Amoxiclav is my high dose antibiotic for sinus or chest infections

I also exercise a lot as I find the more my lungs work the better they are (running & cycling, HIT etc..)

When my nose is very runny or I have sinus problems I also use a sinus rinse, Sterimar or Vicks just from Boots as this really helps

The air quality from March/April to August seems to be when I find my lungs are worse

petchar
petchar in reply to Nelmurphy

hi nelmurphy , I have purchased a rinse (when it arrives) and vicks , I feel ok just now so I will see how things work out my ab course finished yesterday , as you say march to august it might be when the pollen starts ,

hi everyone , the ab didn't work for me so the doc told me if amox doesn't work we will have another blood test which I have done today , I have used the sinus rinse and it was a great help , is it the sinusitis that infect the lung or is it the infection in the chest that causes the sinus problem , I don't know what they expect to find in the blood sample , anyway we will see , thanks to you all

hi everybody, my blood test came back as "normal" , and I am feeling a bit better so I will take the Monday, Wednesday, and Friday azith tablets that a lot of folks seem to be taking and hope it takes care of this sinus problem runny nose etc

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