I am new to the site and have COPD is Cardiff the only centre using the valve technique

[hughiem]

[ingy]

Hi I have been asking about it too. seems there is not much funding. Glasgow doing it in scotland.

best wishes

ingrid

[libby7827]

Hi, this operation has been carried out at Leeds and I am pretty sure it is carried out at other hospitals too, but don't know where. Here is a long written by a member of this forum who has had the operation - it may be of interest to you.

blf.healthunlocked.com/blog...

Libby

[libby7827 in reply to libby7827]

sorry, not a "long" - I meant to say "blog"!! ha ha

[martin1945]

Yes, there are a number of hospitals that are using the endobonchial valve technique including the Royal Brompton Hospital in London, which in many respects is leading the way. Martin

[Hidden in reply to martin1945]

hi again.im new abit.copd moderate ceased the cigarettes rite after i got told .no thanks to my ex gp.ignored my june 2012 xray as ok no action needed.it said on them.slight hyperinflation 2 lungs.am 63 a mum gran an great gran.xmas i took really ill/a locum sent me for a scan.i may ad my ex gp should have done in june but saving his money .it showed up again on scan.i paid 10pound for my med files and thats wen i saw june xray results myself.i googled it.either copd or cystic fibrosis an the clown ignored it.i went to see him.told him wat i thought said ur not fit to practise.i would still be mild/as ive been told u can be mild for years an years just stop cigs.i had been smoking a further 7 month hence i went over to moderate/shame on the man.ceased smoking at xmas there an then.my daughters are taking action against him.hear in oldham u have no help no 1 told me anything.just of the nurse at his practise said ur reading is 67/didnt explain nothing ears ur blue inhaler an seritide 500.see u nx year or be 4.an threw across the desk a booklet on copd told me read it.attitudes stink.i had never heard of copd nothin in the surgery no leaflets anywere and i mite ad its a new 1 only been built like 5yr ago shambles.i have a new gp now same building different practise and hes really ok.he was a bit disgusted about the lapse with my xray of june.this hoz royal brompton ive been googling loads of things.its suppose to be very good .im really amazed theres no cure yet for copd from wat i gather its been around a very long time.so why do this and previos govenments keep sending million and millions of pounds to other countrys in aid wen we are very ill/due to governments past an present not standing up to tobacco giants an labelling the tobacco products years an years ago as lethal/caus they wanted the mony of us.ther is a profesor peter barnes at imperial college london he is an expert on copd.ther is a meeting i think on 15 th an 16 th april/they have been doing trials on mice.google his name.and im asking my gp bout vavles etc .mony going abroad to corrupt regimes needs to stop now i think there is a cure they just want to get there house in order and give it us .makes me so mad.i have never drank or ever takin any drugs in my life just the mistake of bying my own cigs wich i worked for/i didnt go out to rob or burglary or hurt any1/no ive just hurt myself .really annoys me.can i ask how long u stayed copd moderate please.take care

[johnwr]

Hello hughiem,

Here is a list of some of the hospitals doing the Endobronchial Valve procedure. I was given this list a couple of months ago, so it may be out of date. I am pretty certain that it is not complete. I know that there are surgeons/consultant at other hospitals that have done the training but do not yet have the equipment.

Leeds St James (Mr Papas),

Addenbrooke's (Dr Mahadeva),

Royal Brompton (Dr Shah),

Wythenshawe (Dr Barraclough),

Sheffield (Mr Rao),

Kings Mill, Mansfield (Dr Kemp),

Birmingham Heartlands (Mr Naidu),

John Radcliffe, Oxford (Mr Black)

, Liverpool Heart & Chest (Mr Shackloth),

Preston (Dr Munavvar),

Bristol (Dr Jarad or Mr Batchelor).

Cardiff (Miss Kornasweska)

As these people are getting more practised at the op, they are getting better results.

Any questions about the operation, ask.

breathe easy

johnwr

[Hidden in reply to johnwr]

hi johnwr thank u for that info.i live in oldham so if i asked my gp bout these valves would i have to go to the nearest wich is wythenshawe.the treatments seem to be coming throw slowly so im praying ,im copd moderate 63 mum gran great gran we all can have hope .if u get any more updates please will u put it on hear as in oldham ther is zero info.take care

[PollyP]

Thanks johnwr,

That is a great list and good to know the valve treatment is becoming more widespread.

Let's hope it keeps rolling out across the country,benefiting more and more people.

Pollyp

[hughiem]

Thanks for all your replies and information

[tatvam]

what is the valve treatment? I am in the U.S and I have not heard of it. Maybe it is under a different name. Is it where they shut off non working tiny valves and the functional ones take over.

Maudlin

[johnwr in reply to tatvam]

Hello tatvam,

Sorry for not getting back to you before now, but I've only just seen your post.

In the USA, valves have only recently started trials. The company which makes the valves is 'Pulmonx Inc', and Googling their name will directyou to their website.

I would recommend you watch this video:

youtube.com/watch?v=7C6CGqX...(Not working as expected?)

I would also recommend you read the following articles:

blf.healthunlocked.com/blog...

blf.healthunlocked.com/blog...

blf.healthunlocked.com/blog...

blf.healthunlocked.com/blog...

If you have, questions ask.

Breathe easy

johnwr