Appreciate any guidance and help... New to bronchiectasis forum

Hello everyone... I am 40 and have had bronchiectasis for 10 years. I have tried every perscribed drug... With no benefit. Steroids etc have made me put on weight and really just suppressed it the condition

I am getting flare ups a number of times a month.. It is wearing me down. I can't do anything with my mates.. Late night, slightly cold, etc and I pay for it. In the work place... Anyone the gets slightly unwell.. I pick it up.

Feel like I am 80

I exercise 30 mins a day approximately.. Walking and have a total gym. Currently on no drugs and doing my best to manage it by health /natural products. Not that I am against drugs but I have not experienced any relief from taking them

What am I doing wrong... Or what should I be doing to better my life.. Not only me but for my wife

Do others go to bed and wake up in the morning feeling rotten from head to toe?

By the end of a working week.. Friday night all I want to do is get to bed. The other day I was in bed at 7pm.

It's wearing me really down.. Emotionally I feel I am missing life. My wife is very good to me and does all she can to care for me

We live healthy lifestyle.. With fruits and veggies.. No smoking and probably 2 alcoholic drinks a month

Lost 10 kgs recently... Round 90kg.

Appreciate any help

[Greenfingers20]

Hallo Milling,I'm sorry you're feeling so poorly. Do you clear your lungs each morning using the Active Breathing Cycle technique? Or do you have a Respiratory Physiotherapist? I'm wondering if mucus lying in your lung is causing infection?

It's possible you need a consultation to get up to date treatments after such a long time with the disease.

I'm relatively new to it and keep 2 weeks antibiotics for flare ups at home. Take a sputum test via the GP. I have a referral to the Resp physio but found the ABC on Youtube.

When you can it would be a very good idea to get a health check with your GP, some of which can be done at home.

I hope you feel better in the warmer weather.

Fi

[Hidden in reply to Greenfingers20]

Thanks for your message greenfingers20

Never heard of the ABC technique.

Yes been under a physiotherapist but honestly didn't get much from it. It is no doubt it is mucus in the lung.. And now it's spread to the 2nd lung

My GP tells me it is something I will just have to live with.. Keep up the exercise

I live in NZ.. And the health system out here is terrible. The medical system just doesn't have time to see people with cancer let alone someone with bronchiectasis. I have been waiting to see another specialist and have another scan for over a year

We are heading into winter... And I have had 3 infections in the last month

Thanks for your time in replying and help tho

Will look into the ABC technique

[Greenfingers20 in reply to Hidden]

Oh that's tough on you! Main thing is to clear your lungs every morning using ABC. It's mucus sitting in your lung lobes that allows the bacteria to grow and gives you infections.

You can also buy online a small piece of equipment called a 'Flutter' or mine is a 'Shaker classic'- you breathe into it in the mornings and it vibrates your lungs/chest to loosen up the mucus and make it easier than to cough up.

Keep going and keep asking! There are a lot more people who are experienced on here. I'm fairly new to it this year, but have up to date information.

[Mooka]

When you say flare ups do. you mean you are producing more green mucus. If so you will need antibiotics for this. You sound like you need to see a consultant who specialises in Bronchiectasis and a physio to help you clear your lungs. Exercise will help but you may need a little medication to get you back on track and a better quality of life for both of you. I had a bug called pseudomonas colonising my lungs and needed a certain antibiotic to clear it and even then it keep coming back so now have to have nebulised antibiotics daily. I too don’t want to rely on medication but it gives me a better quality of life.

[Hidden in reply to Mooka]

Hello mooka

I can produce up to half a cup of mucus a day...

It starts coming up after being up for 1-2 hours

Right now I have another flare up.. In the morning I get this terrible taste everytime I cough.

The bronchiectasis has now spread into 2nd lung

I have tried so many antibiotics... And have not got any relief from it

Do you have puffers every day?

[Mooka in reply to Hidden]

No I don’t use puffers. I would think you need to get that mucus tested for bugs. Your GP should be able to arrange this although mine often came back negative. Have you had ciproflaxin? That is the only oral antibiotic that will work on pseudomonas which is a nasty little bug that lurks on the corners of many bronchs lungs and keeps coming back. It does sound like you are not clearing whatever bug you have and it keeps coming back.