Just Been Diagnosed with Bronchiectas... - Bronchiectasis Su...

Bronchiectasis Support

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Just Been Diagnosed with Bronchiectasis looking for others stories and advice.

Damali68
Damali68

Hi, I have just be diagnosed over the phone by my GP after a CT scan I have been Percrabed NACSYS 600mg dissolvable tablets I do not get a lot of mucus if any unless I have an infection; so I was wondering if I should be taken these, I have been for a week now? I do suffer from fatigue and have done for around 6 months now. I would love to hear other stories!as this is all new to me, I also have mild emphasimia and I have been asthmatic for as long as I can remember.

looking forward to hearing others stories!

Have a lovely day

Sharon

12 Replies

Hi Sharon, Welcome. I would advise you to post on British Lung Foundation as most Bronchiectasis suffers use that. We are a varied bunch with a large range of lung problems.

I suffer with Bronchiectasis also and have severe asthma, I was prescribed Carbocistine for helping with bringing up mucus. I have not heard of NACSYS but imagine they work the same. I only do what my consultant recommends as my GP doesn’t know as much as him.

I was diagnosed about 8 years ago and took many antibiotics and steroids. Now there is only one antibiotic that may work but I have to put a sputum sample in the hospital to be tested if the antibiotic doesnt kill the infection I have to go in hospital for iv antibiotics. I also suffer with fatigue it comes and goes with me.

There are a few Bronchs on BLF who have had it longer than I and could help you with any questions you might have. You are not alone and are a good group with lots of advice, jokes, quizzes and much more. You can participate as much or as little you want really. 😊

Damali68
Damali68 in reply to Patsy164

Thank you Patsy164 for your advise I will post On the British Lung Foundation.

Have a Good Day 😊

Blackcat99
Blackcat99 in reply to Damali68

Hello - welcome! Yes, I agree with Patsy164, BLF is a much more active forum, and you'll probably find you can get more support through it (although be aware that some of the people on it are in quite a poor state of health, so don't let that panic you, please?)

I also have bronchiectasis and a few other issues which, I am only just realising, are probably part of the bronchx scenario.

Despite that, outwith the times when I have a severe infection, I keep reasonably good health and live an active life, and I think you'll find that that is true of quite a few people who have this illness. The key for me has been to keep as active as possible, and try to expand my capabilities as much as (sensibly!) possible. I find that this really helps with the fatigue element and also, hopefully, makes me less susceptible to infections.

Like Patsy, I have Carbocistine for loosening mucus - although I have never produced much sputum, even when I had TB, many years ago. I only take the Carbocistine when I feel there is something there to be produced. I have a range of daily meds for a mild heart problem, so try not to take anything that I'm not actually needing at any given time - otherwise I start to rattle! You might want to discuss this with your own medical adviser, whenever you can get a chance to do so?

Take care, and see you on the BLF page!

Damali68
Damali68 in reply to Blackcat99

Hi, Blackcat99 thank you for your advice, I will talk to my medical adviser. Thank you again and have a good day

May I ask how bad your fatigue is and how long it took to get to that point? I ask because I was fine a few months ago and now have terrible fatigue, also masses of mucus, no matter what I eat or drink. Inhalers and nebulisers do not really help, do they help you? I understand some people take monkelust, do you? I found the carobcistine helped at the start and now does not help at all.

Damali68
Damali68 in reply to wiserlady

Hi, Wiserlady I only got diagnosed a week ago. so it is still all-new -

My fatigue started about 6 months ago - it is terrible - if I am busy I fine, but as soon as I stop I am asleep - I thought it was a lack of vitamin B12 - but all test came back fine.

At the moment I don't get much mucus unless I have an infection. So trying to find out how it affects others x

Hello was diagnosed 5 years ago with bronchiectisis but have many conditions..for me fatique is horrendous but that maybe is my fibro..I cannot stay infection free for many weeks unless i stay on every other day Azithromycin which i have done for nearly 5years...without it mucous production is high...

Hello, Linnactive I am on Azithromycin and have been for about 2 years now because I kept getting infections - but they could not find out why. They found mild emphasimia and said I had bronchitis and asthma - but did not know why I kept getting infections. But after this last CT scan, they have now found Bronchiectasis and have prescribed me NACSYS 600mg dissolvable tablets which I have been taking for just over a week.

I have a telephone consultation on Wednesday with a limnologist I have no idea Why?

Sops
Sops in reply to Damali68

i may be sleepy today, often am with bronch, but i thought a limnologist is involved in water eco systems, so a bit confused.?

Welcome to the group, Sops

Damali68
Damali68 in reply to Sops

I saw the immunologist they were checking if my repeated infection were caused by my immune system she said no after an in-depth assessment and check on all my scan and she has discharged me.

Sops
Sops in reply to Damali68

That is good news, I am so pleased you have been discharged, hope you will feel less tired without one less worry!

Stay safe Sopsx

Cade1
Cade1 in reply to Damali68

Do you mean an immunologist? If so, this might be to try to help with finding out why you are so exhausted?

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