Hello all you with lung probs I have just joined and recently was diagnosed with bronchiectasis. How are others managing this? I seem to

[fleur24]

have a constant infection despite antibiotics. fleur24

[mustcarryon]

Hello there and welcome to the sight.

I too have bronch: Sadly it is a condition that you have to try and get used to. it may mean, as with myself a change in lifestyle. For instance, I can no longer tolerate steam, perfumes of any kind, I no longer use polish instead I use baby wipes for dusting. In fact anything that contains any smell. I can't go out on bonfire night because of the smoke. Also, a change in temperature, like opening the fridge door could set you off coughing, if that's the case place your hand over your mouth when you open the door. There are many things that affect people with this condition. It's a learning curve, your own body will tell you what your body can and can't tolerate. I'm sure you will get lots of support of this site. good luck.

[peege in reply to mustcarryon]

You're absolutely right Hopetorun, it's a learning curve. One problem I have is that family, friends acquaintances have no idea. One sister and one daughter have an inkling but it's a bit of a pain. I have olive skin, catch the sun very easily so I look very well, almost always grrr

Welcome to the site Fleur, you'll learn lots here

[Trinite]

Hello Fleur24

I have vv mild bronchiectasis, it was a shock to get a chest infection that never went away (2 years ago and counting). Now I have sort of got used to it. I have learnt to accept it and live within its limitations. Exercise is good as it helps bring up phlegm, eating healthily is good too. I have found this forum v helpful and the people on it very knowledgeable. I get tired so it is good to take things a bit slower, still do the same activities but not quite so much.

[stone-UK]

Hi

Have a read of the following,

bronchiectasishelp.org.uk./...

[monkey65]

Welcome, Fleur24. There are plenty of people on here with 'bronch' who are ready with excellent advice. I too have the condition, diagnosed after many years of persistent cough. I agree with other posts about learning to live with it, but there are some treatments and therapies available which can really help if you get your consultant onside.

The antibiotic Azithromycin, taken usually three times a week has been shown to be helpful, not just at keeping the number of infections at bay but also in reducing mucus. Unfortunately not everyone can tolerate it.

Some hospitals offer chest physiotherapy, which can be very useful in learning how to keep lungs clear of mucus and therefore reducing infections with breathing and coughing techniques.

My consultant has also worked hard to reduce other sources of cough which can get mixed up with the bronch symptoms, for instance from GERD (acid reflux) and allergic rhinitis/post nasal drip.

Some people also find diet can help, not just eating healthily but maybe avoiding certain foods - for me, for no apparent reason, bread, cake and biscuits as well as milk chocolate (sigh) but not dark chocolate (hurrah) can set me off.

Take care.

[Tamara70]

Hi Fluer

I have been contributing to this wonderful site for the past year and I am so surprised each day to see the number of people posting messages to say that they have Bronchiectasis. (I, too, have Bronchiectasis for the past sixty years).

About thirty years ago on a visit to my consultant he said that there are so few people with Bronchiectasis that it was like having Leprosy - almost wiped out.

What has happened in the last twenty years to bring on so many people with Bronchiectasis? It is the pollution that is around now or people travelling more bringing their germs with them? When I was 12 in hospital with the disease, I was the only patient with it our of a very large hospital. I could write a book!

Sorry Fluer I don't have anything more positive to say except stay well

Tamara

[mustcarryon]

Hi Tamara

It is very worrying to read what you say. Could it be more pollution, also, more chemicals, even in what we eat. One thing that is becoming an everyday occurrence is the filthy, disease spreading habit of people spitting in the street. Oh for the good old days when if caught spitting you would get a fine.

[cofdrop-UK]

Hi fleur

Sorry you have bronch but glad you have joined us.

Had bronch since babyhood and have managed it for 65 years - often muddling through - we are lucky these days having the internet.

I assume you have already had a ct scan.

Management - make sure you have a good respiratory consultant with a special interest in cf/bronchiectasis (check your con out on your hospital website or Dr Foster).

He/she should always refer you to a respiratory physio to learn techniques and gadgets to help get the mucus out of your lungs, if it stays there it will become infected.

A cf con would also give a sweat test to rule out cf and may refer you to an immunologist.

Monkey has already mentioned using an antibiotic 1 3 times a week or 1 daily as prophylactically i.e. Azithromycin (sadly I am one of the ones who cannot tolerate it but many report less infections). Monkey also mentioned keeping GERD in check and your con should go over this with you.

Another very reputable site where all it's members (including me although not with the same username) is Bronchiectasis R Us. It is not run by a big organisation and is therefore a little slow sometimes, but well worth being patient as they are a lovely bunch with a mountain of knowledge between them. It was started 10 years ago by a lovely young woman we all love to bits.

I think when I was young bronchiectasis seemed to be widely recognised. Apart from genetic forms of bronchiectasis i.e. cystic fibrosis, PC D it may be that immunisation for pertussis and measles has seen bronch decline. However my consultant was telling me that since the controversy over the triple vac when many parents opted for single vac, many more children have presented with bronchiectasis, sadly.

With regard to your constant infections - please try and arrange with your GP to put a sputum sample into the surgery - this will allow you and your medics to see what bug you are growing and what the bug is sensitive to - you are more likely to get rid of the infection this way and your consultant will also see if there is a pattern to your infections.

With best wishes

love cx

[LVPETITE]

RE: I have just been diagnosed with bronchiectasis. Has anybody got any advise or tips that would help?

sorry i just do not understand this site.....been using a computer 17 yrs and i have yet to conquer this site!!!!

From the health food store buy a bottle Oregano oil....use 6 drops in a shot glass of water depending on your problem, cough, phlem or infection..drink it..I warn you it does burn, follow with another glass of water to cool you off!...good luck.....It has been magic for me!

[Jools7770 in reply to LVPETITE]

What do you mean ‘ it burns’? Is this ok? I am trying to find out more about oregano oil and taking garlic!