bronchiastasis

[Numptybrain]

hi I have bronchiastasis and new to it even though consultant thinks I’ve probably had it since childhood, I also have brittle asthma ( fingers crossed, been under control for years). Since 2019 I’ve had double pneumonia 3 times, sepsis twice and currently sat on a ward waiting for a scan for a possible blood clot on left lung but I’ve also been battling pulmonary effusion for weeks, 2 lots of antibiotics haven’t shifted it so now I’m on IV antibiotics and diuretics to try and shift it. My problem is my mucus is thick sticky usually deep yellow or green and I can’t cough it up now due to damage. Can anyone advise what they might do to help me please.

[sassy59]

Sorry I can’t help but just want to give you a virtual hug🤗Hopefully someone who can help will reply to you soon.

Best wishes to you xxx

[Numptybrain in reply to sassy59]

Thanks hun

[peege]

Hi just to say welcome to this patient's forum! Do you take Carbocysteine or NAC (N-Acetyl Cysteine) ? And are you drinking plenty to help keep the blood and mucus thinner?

I answered someone else on clearance which you may get notification of. If you don't let me know. P

[Numptybrain in reply to peege]

Hi

Thanks for reply, yes to carbocysteine, I drink load’s because I’m constantly dry. I’m getting checked for blood clot, autoimmune disease and fluid checked also. It’s all new but scary at the moment.

[peege in reply to Numptybrain]

Shame I can't help more but good idea of MoyB to ask for respiratory physiotherapist. They might not be working at the weekend but at least you'll hopefully be on their books. There are different methods of clearance so fingers crossed 🤞

[MoyB]

As you're on a ward, could you ask to be seen by a respiratory Physio? They may not be working today as it's Saturday, but I know my daughter in law gets called in for such things on a weekend.Might be worth a try as they could advise the safest lung clearance technique for you to use. Nurses on the ward may lack the necessary expertise to help you.

Xx Moy

[Numptybrain in reply to MoyB]

Thanks Moy

I’ll definitely ask

[Dottie11 in reply to Numptybrain]

Yes Res Physio may be really helpful. Good luck.

[Nula2]

Hi there 🙋‍♀️, can't add any more than others have already said but wanted to welcome you to this lovely forum. It's full of friendly, supportive and kind people. It's become a lifeline to me 🙂. Good luck and take care xxx

[Numptybrain in reply to Nula2]

Thank you, I’m so pleased i found somewhere to go with people who have the same issues as me, it’s reassuring to know you’re not alone in this. I could deal with my brittle asthma but this is all new, consultant does think I’ve been wrongly diagnosed from a child to adulthood and it’s been bronchiastasis all along but obviously under different names as the years have passed.

[Nula2 in reply to Numptybrain]

You're right it is good to share with people who understand 🙂. Yes it makes you wonder how many people have been misdiagnosed and treated for asthma instead of bronchiectasis. I'm on mucus thinners and have an acapella device and also on inhalers (Fostair & Ventolin) all of which help clear some of the mucus. Been told I have Asthma as well as Bronchiectasis & recurring Aspergillosis. Take care 🙂xxx

[Alberta56]

Welcome to this friendly forum. I hope you get some relief soon.

[Numptybrain in reply to Alberta56]

Thank you, getting a scan tomorrow so hopefully by Monday they might have some answers for me.

[Patk1]

I'd ask to see lung physio while Yr in there x

[Kiaman08]

Hi as a suffer myself of both asthma and bronchesties the best advice would be to speke to physio who spieclisr in lungs There is a thing called a flutter where u breath im to it and it make ur chest viberate that shud help loosen the mucus.

As yourself i always end up on iv antibocs at least 3 times a year

Hope this helps god bless

[Numptybrain in reply to Kiaman08]

Thank you I’ll ask about this

[garshe]

Carbosisteine helps loosen mucus. Also I take Covonia mucus cough oral solution. Hope this helps xxSheila 💕👍

[B0xermad]

Are you on any mucolyte medication? ACETYLCYSTEINE OR CARBOCYSTEINE at all and definitely use a device such as an acapella or flutter would help enormously.

[Digger0]

Sorry to hear your problems. First of all, as the physios to see you to teach you chest clearing techniques - I use this ouh.nhs.uk/patient-guide/le... Secondly, see if your doctors can put you on meds to thin the mucus - I'm on Carbocistine. Good luck

[Izb1]

Hi Numptybrain and welcome to the site. Its difficult to say what you should use as you dont know what may affect your current condition, as most have already said the resp physio would be your best bet. I hope you get some answers soon and can get treated , sounds like you have been through enough already. Take care x

[Lfcpremier]

Are you able to nebulise 7% saline? I do that 2x daily & then lie down on each side for 20 mins & husband pats my back.Try the site 'Bronchiectasis r us'. Very helpful & informative.

Good luck! 💕

[gingermusic]

So sorry to hear how you are, do you take Carbocisteine tablets? I am on the max amount of 2 x 3 daily which helps the mucus to thin and then be coughed up more easily. I also find that using a nebuliser 3 times a day with saline in it really can help. I do hope this helps you. x

[Numptybrain in reply to gingermusic]

I have been using a nebuliser using double dose 4x daily but hopefully they’ll sort me out I’m getting a CT PA scan this morning

[Numptybrain in reply to gingermusic]

They’ve been giving me it through IV while I’m in hospital

[gingermusic]

That is good to hear I wish you well and hope you fully recover soon

[Afibflipper]

Hi - I am nowhere near as bad as you & hope you get better very soon. I had a 4 month unresponsive infection end of last year - I’m asthmatic & now have mild bronchiectasis, GP was going to defer for IV antibiotics. At the time I wasn’t under a respiratory team as I’d been well for years - I got a new consultant who gave me Cefuroxime, changed inhalers to Anoro & Alvesco. Within days it responded, I’m not medical so maybe no good for you, just hope you’re sorted soon. 🤗

[Numptybrain in reply to Afibflipper]

Bless you, and thanks

[lvn0619]

What are your sputum culture results. Culture must include AFB and fungus. With education from respiratory therapist you should be doing airway clearance twice daily with albuterol and 7% saline as soon as possible. It’s most important that you educate yourself on this disease and treatment protocols. Lung clearance is essential to prevent worsening of disease from drug resistant bacteria. We have to be diligent in educating and advocating for ourselves to stay on top of this disease. Lot’s of information here. Take care .

[sheshed01]

Have you heard of the smartvest? It uses percussion to loosen the phlegm and it really works for me. I am on medicare and with prescription from doctor insurance pays for all of it. I had a tough time of it before the smartvest, use it twice daily, check on it if you are able to get one it is wonderful. Love to you

[Numptybrain in reply to sheshed01]

I’m in the UK , but I don’t have insurance unfortunately.

[beech]

The diuretic, whilst helping to clear away the fluid overload, will also be drying out your mucus membranes. But at the same time the mucus that is being produced by the inflammation in your lungs will become thick and sticky, making you unable to cough up the mucus and breathless - it’s a bit of a Catch-22 situation.

The Carbocysteine and NAC suggestions are very good, and as much hydration as you can achieve. Your medical professionals need to be made aware of your problems and discomfort, and should be able to help you. Keep repeating yourself till you get the help you need!