Most members on here seem to have COP... - British Lung Foun...

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Most members on here seem to have COPD. Are there any members with Bronchiectasis - especially if they had had Pseudomonas attacks?

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Sorry, I am a COPDer but there are quite a few people on here with bronchiectasis. I am sure some of them will be along soon.

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A very warm welcome to you.

Yes there are quite a few peeps on here with bronchiectasis. I have had it since babyhood and asthma more recently. I am not colonised with pseudomonas - my colonised pet is haemophilus influenzae although strep pneumonaei likes to try and take over and become top dog at times along with the usual pests morax etc.

Are you colonised with pseudo then poemsgalore? Another excellent reputable site is Bronchiectasis r Us. It is not run by a large organisation and is sometimes a bit slow, but the members are so knowledgeable and supportive of one another, so worth a look.

Look forward to seeing your further posts.

Love cx

Hi c. I would like to ask your advice as I'm a newly diagnosed bronch. I feel like rubbish, I can hear the crackles both sides of my lungs and my breathing is somewhat laboured. I feel cold, nails are bluish and I've been nodding off all day long. Have a generalised headache and a slight cough. I recently finished two weeks of my rescue meds as the GP told me to start taking them after listening to my chest. I didn't feel nearly as bad as I do now.. but I don't feel as ill as I was when I was in hospital but worried I may be heading that way again. The only difference between now and when I was in hospital is the nebulisers they were giving me. I'm now taking all the medicines daily that they gave me on the ward plus my ventolin inhaler and spirva inhaler and I felt as light as a feather when discharged. Should I ask my GP to prescribe some saline 0.9% and I buy the machine or pop to A&E tomorrow and ask to be nebulised. I should be taking my dog for a walk now but its too cold and windy.. if I put my scarf over my mouth I feel like i'm suffocating. Sorry to be a pain but maybe i'm overreacting!!!!! Somebody shoot me now please :)

Hi Holly

Well I'm not gonna shoot ya for sure!

I defo think with the symptoms you are getting you need to be reviewed. If it were me hun I would make an appointment today and if they say there are no appointments I would ask for a doc to 'phone.

It's very difficult for me to advise further hun as I don't know what bug you had in hospital, what they treated it with. Could be you picked up another bug, either in hospital or in the community which may not have been sensitive to the home meds.

You might also want to 'phone BLF with all these details and they will advise you and will know from your symptoms if GP or A and E is advisable.

I know this is an acute situation at present hun but generally I would ask consultant about physio referal and ask cons also about nebulising saline - they may loan you a neb and the benefit is it would be changed or maintained every year and new cups and mask or mouthpiece.

Right now though you need to be assertive and get this acute stage reviewed (I know it's hard when you feel unwell) but the sooner you get cracking the sooner things will improve. If doc wants to see you (which I would have thought he would and should) ask if you can do a sputum sample to see what you are growing but you should be treated in the meantime.

Good luck getting sorted Holly - please let us know how you get on.

Healing hugs

cx

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Omg....your not over-reacting...it's the reality of ,I'm finding out ,that you have to study to get any for your self,don't be forbed off.you have a right to health,try another medicine,see a pharmacist ,they can be more helpful than docs.

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So what's the difference then,bronchiectasis and copd, I think the copd is used as a label for everything,as it takes more effort to be precise

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What's the difference between copd and bronchiectasis

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Hi Artist

COPD is an umbrella term for emphysema and bronchitis. Non cf bronchiectasis is a separate condition and is more akin to cystic fibrosis in lung terms.

patient.co.uk/health/bronch...

patient.co.uk/health/chroni...

Love cx

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Hello poems galore. I was diagnosed back in June with bronchiectasis. You can read a lot of what I was experiencing before I was diagnosed on site. It's good to have you here. By the way I enjoyed reading your poems. Thank you for sharing them. Holly. x

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Hi I was diagnosed with bronchiectasis and late onset asthma earlier this year after having a couple of years of constant coughing and chest infections. It has taken a while for them to get my meds right but have now been really well since the summer. I take azithromycin 3 times a week prophylactic, montelukast and symbicort 400 inhaler. Also use an acapella and prednisolone when needed. I did have a pseudomonas infection and was given the wrong anti biotics ( augmentin) for a while which doesnt work on that particular bug. They did get on top of it and have been ok since. I think my symptoms are quite mild compared to many on this site. I am being treated by the Brompton in London and they are fantastic, very thorough.

How are you feeling? Are you happy with your treatment?

Hi Poemsgalore

Yes I have Bronchiectasis. I was diagnosed in March, so quite new to all this. Up to now I am not very happy with my treatment. They gave me symbicort alongside my Ventolin but I had bad side effects and had to stop the symbicort. They also gave me a nasal spray for my nasal drip and emergency antibiotics and thats it. I got myself in to a Pulmonary Rehab

class and I am fighting to get to see a physio at the moment (been trying for 4 weeks) as I cannot cough up the phlem that I can feel down there and need help.I do feel that us Bronchies are the forgotten ones and most people (including Doctors and Nurses) don't seem to know much about it. You may find the Bronchiectasis R us forum helpful if you are very patient with the site , it is very slow.

Luv PT

Hi PT

You are so right - the orphans of the respiratory world - you sure have to be on the ball to be a bronchiectatic. Is it your consultant you are unhappy with? If so pm a city you have access to and I may have name of a cf unit. Also on BRUS they have a recommended doc topic, although of course the rec are international as well as UK but might be worth a look.

cx

I have bronchiectasis. I had several attacks of pseudomonas. I was given inhaled Colomycin as a preventative and Cyproxin when the infection got under way.

My consultant told me that my lungs are damaged and vulnerable to infections. Lately I had pneumonia and a TB-like bacterium ( a type of Mycobacterium) was detected in my sputum. I was given long term, Rifampicin and Clarythromicin.

You have to look after your lungs with some exercises, that will definitely help you.

Take the number of the Lung Foundation Helpline, by clicking on the red balloon of the Lung foundation website. They are helpful. don't hesitate to call your GP if any green stuff comes out. Try to send a sputum sample quickly, before you take any antibiotic, so they can detect which bug is attacking you. Take care.

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I had pseudo at the beginning of 2012. I had the usual 2 weeks of IVs in hospital, then 3 months on colymycin. Also took cipro but it gave me tendonitis so had to stop that. The pseudo was still in my lungs by September, but not causing any problems. Then I got breast cancer and had surgery Dec 12th 2012. While I was under the anaesthetic they drained my lungs - which I assume was a bronchoscopy. The because I was going to have chemo, my specialist put me on Azithromycin (1 Mon, 1 Wed, 1 Fri). I still take them. My chest has been fine all through chemo, but I'm now beginning to cough more again (white sputum). I still get out of breath though. I wondered if the bronchoscopy would have shifted the pseudo?? I don't want another episode like last time!! Thanks for you support and advice.

Even my nurse practitioner at the surgery doesn't know much about bronchiectasis and she's in charge of my respiratory health at home. I only see my specialist when I'm actually in hospital!!

I mentioned "listen to the patient"money should NOT be a deciding fact!!!

Hi poemsgalore

Blimey hun really sorry you have had such a rough time. I don't know the answer to the pseudo and bronchoscopies, except to say I know lots of folks with pseudo who have had bronchoscopies and still have pseudo. It might reduce their effectiveness temporarily. There may be someone along who has pseudo who can help or you could ask BLF.

I'm concerned your bronchiectasis is not being managed by a respiratory consultant with a special interest in cf/bronchiectasis - it should be. Maybe you should think about changing your consultant. Again if you pm a city you have easy access to I may have the name of a cf unit and consultants within your area. I know the nurses at my practice, as lovely as most of them are, don't even know how to spell it let alone know much about the condition.

Good luck hun

cx

Well, just before my cancer treatment I was supposed to have an appointment with my consultant but had to cancel as cancer sort of took over. I also have RA, Sjogren's syndrome and osteopenia. So many different people to have appointments with. I usually see them annually, and keep myself topped up with my nurse. I'm supposed to keep meds in for exacerbations but have let them lapse. Would I have to stop taking Azithromycin if I did take them. I usually use Amoxycillin 500 over a two week period.

Like you hun I have to do the rounds of consultants. Have inflam arthritis and.like you, osteopenia, so have to see a rheumy, GI, dermatologist from the melanoma clinic and of course my respiratory consultant and yes I agree it's a pain in the whatsname. However I feel being under the care of a respiratory consultant is integral to the management of your bronchiectasis.

love cx

I have bronchiectasis, rheumatoid arthritis and coronary heart disease.

have had pseudomonas since xmas. I see 3 consultants and it gets confusing!!!

I am on nebulised Colomycin and tablet ciprofloxacin as well as RA and heart stuff.

My respiratory chap asked me if I have asthma- how do I know???

In the last few months I have been in hospital- IV antibiotics, CT scans, x-rays, lung function tests, oximetry test for sleep apnoea.

Still confused and feel like the symptoms are not controlled well- sleep very badly, waking up several times in pain and very breathless or not getting to sleep until 3am. I would feel better with a good night's sleep.

I want to do exercises but feel too ill.

hope you people out there are doing better.

xxxx

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