What can I expect from Bronchiectasis - Lung Conditions C...

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What can I expect from Bronchiectasis

Chestikov profile image
11 Replies

Pushing 50 and I have just been diagnosed with this. It does explain a lot - regular chest infections, wheeziness, fatigue etc..

My Dr has organised respiratory physiotherapy and I have the emergency supply of medication for use as and when.

Can I expect this to improve with proper management or is maintaining the status quo considered to be success ?

I read a few things last night (Dr google) , wish I hadn't as the prognosis was rather worrying. My Dr seemed to think everything was very manageable - so I am more inclined to trust him as I have wonderful plans for getting old my with lovely wife.

I would appreciate any comments from others out there in a similar position.

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Chestikov
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cofdrop-UK profile image
cofdrop-UK

A very warm welcome to you (good name). I assume that as you have a diagnosis of bronchiectasis you have already had a ct scan. I hope this also means you have a respiratory consultant with a special interest in cf/non cf bronchiectasis. If not, then I would ask your GP to refer you.

Google has some scary and sometimes inacurate information. It can also be helpful if you stick to reputable sites. BLF and Bronchiectasis R Us. Anything from the European Respiratory Society, but presently the best information in my opinion and of many others with ncfbe is the following link:

chss.org.uk/documents/2013/...

Hope you find it helpful. BTW many people with bronchiectasis have lived with the condition for many years since childhood and indeed babyhood.

Clear your lungs and get as much exercise as you can manage.

Love cx

Chestikov profile image
Chestikov in reply to cofdrop-UK

thanks for your reply, yes I had a ct scan and a number of other tests with a respiratory consultant. It was assumed to be just a bad bout of asthma , but the scans showed the issue clearly in my lungs, rhs at the bottom was the worst part. The consultant seemed very clued up and also identified a very high allergic reaction to dust mites so we are all over that now to minimise the potential exacerbation issues. Thanks for the advice, I could not see the link, would you mind resending it please ? Thx, ditto on the amusing name 😏

cofdrop-UK profile image
cofdrop-UK in reply to Chestikov

Good to hear you have a very proactive medical team.

chss.org.uk/documents/2013/...

If that doesn't work for you put Scottish Heart Chest and Stroke Living with Bronchiectasis and choose pdf in your search.

Good luck

cx

Hello chestikov. Cofdrop has given great advice. My personal priority is to maintain the status quo but that's because I already do the physio, take a lot of drugs, and do all the lifestyle things to keep infections at bay. As you haven't got your regime set up properly yet, you may well be able to improve! Certainly, drugs will help the wheeziness, and you can do a lot to stop these regular infections. If the drugs you're prescribed don't help the wheezing enough, tell your consultant/gp, as there are quite a few options available now. I have severe asthma underlying the bronch but my drugs help a lot.

Physio is the most important thing. Congested lungs attract infection so it's essential to keep them as clear as you can. This will help with the fatigue too. As much exercise as you can fit in - aerobic exercise will help greatly in coughing stuff up. Also simple things - drink plenty to try & thin the mucus, don't touch public door knobs etc (you'll become adept at using your elbows and your coat sleeve pulled down over your hand!) If I have to press a lift button, I use a knuckle rather than fingertip. Carry anti-bac gel around & keep some in the car. Try not to touch your face. Lots of hand washing. It soon becomes 2nd nature & these things really do help protect you against infection.

I'm not as much of an old hand as cofdrop ;) but was dx'd at 43 & am still here living a good life over 20yrs later, with hopefully many years to come, so you can expect a long life with your lovely wife :)

Sparkywoo profile image
Sparkywoo

Hi, I have always had asthma, lots of allergies and was diagnosed with Bronchiectasis in my mid forties, nearly 10 years ago. DONT LOOK AT GOOGLE, you'll have yourself as dead in five years if you're lucky! The difference Bronchiectasis has made to me over time is that when I get chest infections they are very bad and take ages to clear. Rather than two weeks, they can take four or five. The respiratory Physio has made a huge difference to me and it's good that you have agreed an action plan for when you get an infection.

Unfortunately the lung tissue will not repair so its key that to stop it getting worse you treat any infections quickly and make sure they clear thoroughly. I try and do aerobic exercise as often as I can - fast walking, running whatever but keep them lungs moving!

I too have a major dust mite problem. Where possible get rid of soft furnishings - curtains, carpets etc especially in your bedroom. Try and keep everything dust free and I find using a damp cloth rather than a duster stops it all flying round in the air. You can get special protectors for pillows and mattresses but I just give all the bedding a good shake in the morning and make sure I let the bed air all day.

could the dust mite problem be causing the wheezing? Have they suggested using an inhaler at all?

Keep asking away and try not to worry

😀

Chestikov profile image
Chestikov

I just wanted to thank you for your comments today, they have snapped me out of my morning depression! Onwards and upwards I hope. Removing dust mites and starting the physio will hopefully make difference. I will keep in touch as this has been very useful. One question I forgot to ask is whether this condition can give you sinusitis type feelings, stuffed head and yellowish mucus, Even though my chest is relatively clearish at the moment ?

Sparkywoo profile image
Sparkywoo

Hmm sounds suspiciously like a nasal/sinus infection caused by mucus created by the dust mite allergy. You might need something perhaps antibiotics to clear it, I would check with GP. Part of my armoury against the little beasts is to use a steroid nasal spray twice daily as you need to avoid what is delightfully termed 'a nasal drip' which does just that down your throat to your chest and can cause an infection. If I don't use it I get exactly the symptoms you're describing. It's a rapid learning curve!

Chestikov profile image
Chestikov

Thanks I will mention this to the GP

Chestikov profile image
Chestikov

Does anyone have any inside lines on air purifiers to help ? Lots of ionised/non ionised hepa/carbon etc options , now slightly confused....

Offcut profile image
Offcut

With the emergency pack only use when there is an infection not just a gooey chest. Easy to reach to early (My GP Practice will not do these packs)

I have had it most of my life so it can keep you on this world for sometime yet 60 years and counting for me!

Look at medical sites not hearsay ones btw.

Be Well

monkey65 profile image
monkey65

I think quite a lot of us get diagnosed with bronchiectasis at around 50ish after years of asthma/wheezing/allergies. If you search on here for bronchiectasis you will find lots of good advice. I've had it for a few years (diagnosed at 49), and after a bit of messing with medication, I'm pretty well these days. Not needed a rescue pack for nearly twelve months. Key for me has been azithromycin, an antibiotic taken for an extended period every other day, which is pretty standard treatment these days.. Ask if it's not offered! Otherwise, try to avoid infection as much as you can - wash your hands, get a flu jab, eat healthily etc.. Over production of mucus, because of allergies or whatever won't help. I find that Benadryl naturease, which is a non-steroid nasal spray is really useful. Best wishes, monkey

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