I have bronchiectasis and a small area of fibrosis which my consultant says not to worry about but I am concerned that my breathing is

[maxer]

getting worse with more chest infections. Any advice friends

[Mocarey]

It is good news that the fibrosis is confined to a small area. However you really need to be proactive in the fight against bronchiectasis. Do you try to clear your lungs each day? That gunk really needs to be shifted otherwise it's a breeding ground for infection. How bad is the bronciectasis? Do you hand in sputum samples for culture if you feel worse than normal. Don't just accept you are more breathless insist on good treatment.

[maxer]

Thanks Mocarey all good advice and I will try to be more proactive. I do find it very difficult to clear my chest but am now going to try harder and produce a sputum sample which I have not done in over a year.x

[thatcham1939]

i have recently been dianosed with bronchiectasis, i have had two lung funtion tests, the first one worse than the second, a chest e-ray and a ct scan, which revealed the tb i had when i was 14 had caused the chest complaint, i havent had to give any sputum samples.

i wonder if physio would make any diffence.

i feel very alone with this illness, i had no idea my tb of 45 yrs ago would end up like this, the hospital doctor has put me on fixetide to puffs twice daily for two months and then leave it of until i see the doctor in january 2013

[Hidden]

Hello guys, sorry to hear of your diagnosis but now you can find out what you're up against & start to take control. I've had bronchiectasis for 18 years (mine was thought to originate in lung damage caused by childhood pneumonia & measles). At first one infection after another laid me really low & I had nearly 3 yrs unable to work but now I'm in a good place, on top of things. Knowledge is power so first of all find out all you can from BLF and also the following support website is a great fount of information bronchiectasis.info

If you go on there & tell them your story you'll get lots of advice from people who are very experienced at managing this condition - you are definitely not alone!!!

Anyone with bronch should be treated by a resp physician who specialises in it. There are some really good units around, but imo a "general" resp person wouldn't know enough. I've had fantastic treatment at the Brompton, having been referred there from my local general hospital.

Nowadays it's treated in the same way as cystic fibrosis in terms of the antibiotic therapy and physio required. If you have any gunk at all lurking in your airways, then referral to a chest physio is essential to teach you how to clear it - it's that gunk which forms a perfect culture for bugs, ie warm and moist. Also you should ask your gp for a course of decent antibiotics to keep in reserve, a couple of microbiology forms and sputum pots. Then, as soon as you get the signs of an infection, get a sample of sputum into your local hospital lab asap before you start on the antibiotics (obv see your gp too if you can, but in my experience these flare-ups often start on a weekend!)

Bronchiectasis can be successfully managed but as Mo says you have to be proactive with it, show it who's boss!

love, FF x

[cofdrop-UK]

Hi fellow bronchiectatics

Great advice from my good brochi friends mo and fairyfootsteps.

I have just written this in answer to optimist, so if it’s ok I will edit and and paste it as it’s a bit lengthy. I do go on a bit I’m afraid. Some of the info has already been said by my bronchi pals, but I have to do my physio yet so I will just copy if that’s ok.

With bronchiectasis you should most definitely be under the care of a respiratory consultant, especially one with a special interest in cystic fibrosis/bronchiectasis and not just your gp. You need to be your own advocate and look at your local hospital site's list of consultants or Dr. Foster and ask your gp for a referal. There is a site some of us belong to also called Bronchiectasis R Us, like here they are a wonderful family. One of the topics is recommended doctors, mind it is international, but you may find one in your area. There is also a topic on physio,

Even though bronchiectatics have the same condition, we are all different in the amount of mucus we bring up, the techniques we prefer to use to get up the mucus and the gadgets which we feel work for us. This is why it is important that you see a good resp cons. One of the things he/she should do, which is essential is to refer you to a respiratory physiotherapist who will teach you all the different physio techniques for getting up the gunk and will show you gadgets which will help with this, and hopefully find the one which suits you best. I note you already have a flutter. Some bronchs like it - personally I much prefer the acapella as you can use this in any position, useful if you do postural draining with percussion. Please note once you have been taught physio you will be expected to do it yourself as it needs to be done every day.

Do you have a nebuliser already, as nebulised saline is brilliant in my opinion at loosening up the gunk and making it easier to get up. You might want to ask cons about this.

Many of us have been 'loaned' nebulisers and given acapellas from the hospital, but I know some unfortunately are not so lucky. Hope you get one, but if not here is a link where you can obtain an acapella, but I would hold out first as their not cheap. If you purchase one ask for a medical vat exemption form which has to be signed by a medic. I was given the 2nd one at the hospital the Acapella Choice.

henleysmed.com/page/aca...

So to summarise what you need to do for the condition of bronchiectasis.

1. Do your homework and find a resp cons with special interest in cf/bronchiectasis.

2. Ask your gp for referal.

3. Ask cons for referal to a physiotherapist, which he/she should do anyway.

4. Ask if cons thinks nebulising saline would be beneficial for your dh.

5. Obviously follow any new medication regime and do the physio (it is the most

important thing we can do for ourselves, to help keep infection at bay).

A lot to take in I'm afraid. If you want to chat please don't hesitate to pm me. I'm not an expert, just someone who has had bronchiectasis for 64 years now. One thing I have learned is you never stop learning and I learn something new every day from my bronchi pals and from peeps with other lung conditions.

Good luck

With love

XXX