Newbie here and scared

[EMaddy2]

Hello everyone,

I am here on behalf of my husband, I hope that is ok. He has recently been diagnosed with bronchiectasis (assumed related to another autoimmune condition). Honestly I am terrified, we have been given such little support and reading around it is really scary. I am trying to take the bulk of research so my husband does not have that on top of everything.

So I guess I have a few questions:

Is anyone here from the UK? Trying to find a specialist is really hard

Also looking for some reassurance really, I am so scared about prognosis because we have been given so little information or support. Just really worried about it

Thanks for anything you can offer from one worried wife trying to support my husband.

Thanks again

[Emily-G]

Hi, I’m in the uk - north east Scotland and also have Bronchietasis. There are lots of people who are more knowledgable than me and hopefully they will pop on soon.

Try not to feel overwhelmed with the online info. A bronch specialist is really helpful, and I have an amazing physio who has really supported me with living adjustments and keeping my chest as clear as possible (my gp refered me to physio so I think you could prob ask for that while waiting for specialist appointment)

All the best to you both

[Mooka]

Please don’t worry. I’m in the U.K. and have lived with an autoimmune disease for 15 years followed by Bronchietasis a couple of years later. This is quite common. You need to look at large teaching hospitals and check the specialities of the respiratory doctors. I’m actually looked after by a respiratory doctor who specialises in my autoimmune disease but he asks for help for me from a bronch specialist at my local hospital. I’d keep to reputable websites like asthma and lung conditions for info. Also join their thread on HU. Repost this and you will get a lot of support. There’s plenty of people or their partners on there with so much knowledge and always willing to help. In the meantime look up active cycle of breathing for help to get rid of any gunk. You should be referred to a physio to learn all this. He should also have something like carbocistene to thin the mucus.

[Bronchi1]

Dont look at the internet! Listen to the specialists and your hb will find what works for him. I've had bronchiectasis for about 15 years. He has to eat well, stay away from crowds, stay away from under 5s and stay hydrated. I take supplements like Vit D (anti-inflammatory) , C and zinc ( to boost immunity) and fish oil. Hope you can see a consultant soon . Also get him to see a physio fir goid technique to bring up the gunk! Good luck and dont panic. Stressing just makes everything worse and changes nothing. In fact it clouds thinking too.

[Patk1]

Has he been told if its mild or moderate? Most of bronchiectasis care is self care - apart frm medications the main stay of self care is lung clearance ea day,usually twice,morn + evening.does he have mucous? If so ask for referral to see lung physio.meanwhile read up on + see videos on aluk website at acbt,huffing technique.he can start till he sees physio..he should keep active+ avoid people with viruses which often cause us exacerbations.theres also aluk helpline + I'm sure the nurses will reassure u both :-Mon- Fri 9.15am-5pm

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