Has anyone had this procedure and how was it for you 
?
Hi, I've been diagnosed COPD nearly 4... - Lung Conditions C...
Hi, I've been diagnosed COPD nearly 4 years now but only just joined today. On Friday I go to hospital for Endobronchial valve implants.
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notlocal
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Welcome Notlocal...sorry I have never heard of the treatment, but look forward to reading your repliis so that I can find out out it too
Love Sohara
Hi there, below is a link to a post by one of our members, johnwr, who has had the valves, that you should find interesting, All the best for your op! Libby x
healthunlocked.com/blf/post...
Also, this one
Sorry I cant help but would it sounds very interesting. Good luck with your operation and please let us know how you get on. Take care, TAD xx
notlocal• in reply to
Thanks! Will post here next week post op..I'm going into hospital all teched up! xx
Hello Notlocal,
I,ve not seen you before so let me say 'Welcome to the site.'
I also notice that Libby has put the links to a couple of articles I've written.
I had valves fitted in Feb 2012. For me it was a huge success, I got my life back.
I have collected all the relevant articles I've written into one pdf which can be accessed at:
attachment.fbsbx.com/file_d...
If you have any questions after reading that lot, I will be happy to answer them.
If you want to talk to me on Skype, send me a Private Message, and I'll send you my details.
As regards the operation, may I offer you my best wishes for success and a speedy recovery.
Breathe easy
Johnwr
A reply to Johnwr and also to Libby, TADAW and Sohara above - thanks guys. I've been feeling a bit locked away this winter down in the West country, going through all the tests to see if I was suitable for the op. Death by chair Johnwr said his friend called it and it's true you avoid doing much that will cause you breathlessness. I'm going to have a longer look at your stuff John....The op? There's a nice little animation which explains it here: pulmonx.com/en/downloads/vi... be warned, it doesn't work on all computers. As it's non invasive and reversible, I'm not too nervous, just curious/hopeful. My consultant says it will improve my lung function 20-30% so here's hoping it's a success! I'm also looking for local (Bristol) groups of COPDs as I want to get out and meet more people so any suggestions gratefully received. Cheers.
Welcome notlocal.
I've not had this procedure done myself but I am glad you have already been given some good advice concerning this.
I wish you successful endobronchial valve implants and will be thinking of you on Friday. Please do come back and let us know how you got on.
Here's to you breathing easier.
All good wishes BC
Hi and welcome Notlocal. Good luck with the op.
Good luck on Friday and best wishes for a speedy recovery.
Why don't you go along to your local Breath Easy group to meet local others. P
best wishes .... keep us updated please. x
£%@$ng H$%&ll ! Hospital called and cancelled my operation tomorrow. Not enough beds. This is the second time it's happened and I'm really pissed off but there's nothing I can do. They'll call again next week to reschedule.
That's a big blow, not as if you're having an ingrown toenail removed! For such an important operation it must be devastating, you'll have got yourself mentally prepared and now go through all that again. Hope the rescheduling happens soon, chin up, keep your eye on the prize! Very best wishes. Libby PS I have been trained to read gobbledegook (the beginning of your post) and that's very naughty!!! Lol!
Listening to this youtube.com/watch?v=cMcA-HG... - it helps (plus a glass of rum )
They look so young don't they. Ray was on the tv the other night, does't look too bad for his age now really! They're planning a 50th anniversary comeback this year!
Well, after last week's big disappointment - operation cancelled at the last minute - the hospital just called with a new date, Fri 24th Jan so fingers crossed it'll be third time lucky. I don't begrudge the emergency beds (escalation black code) but there is a wider issue of NHS underfunding by this government. I'm told that it's presently escalation red, slightly better, and that my two previous cancellations will be taken into account. Onward and upward, I'll keep you posted.
Hi
I'm 62 & have A1AT, an inherited genetic deficiency causing severe emphysema/COPD. In short, I am incapacitated by a very advanced lung disease ..... bit of a bugger for a previously fit non-smoking hill walking farmer.
I had Endobronchial Valve Insertion in October 2011 down in The Heath in Cardiff. I felt absolutely great for the first couple of weeks but after a couple of months I was back to the same FEV1 & FVC readings as I had been pre-op. I was one of the first to have the procedure but one of the few it hasn't worked on.
I'm currently being assessed for another new procedure, Endobronchial Coils ..... I don't give up easy.
Meanwhile, I'm trying to get the best of life by bombing about on my electric bike & my incredible TravelScoot scooter.
Meanwhile, good luck with op .... it really is nothing to worry about ...... no blood, no pain, not even a sore throat. I hope it works for you.
**Notlocal** ..... I'm just over the Severn Bridge, just 14-miles from Cribbs Causeway, so almost on your doorstep if you fancy meeting up for a coffee.
Cheers.
Oh, my sister went out with Ray Davies a few times before The Kinks were rich & famous ....
Heya out - for - lunch, thanks for the reply. I hope that mine goes better and that the coils work for you. My consultant mentioned them as a possible next step. After two cancellations and a month later than expected I go in for the op this Friday. There's still a final hurdle which is if the lobes are fused (bad) or free moving (good) but you must have been through that. Are you Chepstow/Monmouth area? Will let the op settle and would be good to have a coffee!
Chepstow/Monmouth ..... almost, I'm actually Tintern.
Best of luck on Friday - you'll be home by Monday. Post op, don't breath-in cold air or let your chest get cold whatever you do. Where are they doing it - when mine was done The Heath in Cardiff was my only option without going to Birmingham or London. I had one hell of a battle getting funding - it wasn't an approved procedure in the Welsh NHS.
I'll be waiting ..... don't let the coffee get cold.
Thanks for the advice OFL, no one's told me a thing yet (although they might!). I shall follow it to the letter. Keep you posted,
BRI Bristol location.
Good luck to you with assessment for coils....I recently moved from FOD to Glos, although used to live in Tintern 30 years ago! (Have smoking related COPD ) wishing you well.
May i ask which consultant advised you that coils may be the next step? (I work for the company that makes Endobronchial coils)
Thanks
Mark
Hi Chambers, I have no objection per se about naming my consultant but would first like to ask your reason for asking. My valve LVR didn't work unfortunately and my next appointment with him is in September. I can't remember if the coils were mentioned pre or post op, but I think pre.
• in reply toout-for-lunch
I have pannicinar emphysema from Alpha 1 the consultant told me valves would not work for me I will ask about coils always trying something that will slow it down is good idea.
Ali
that sounds nasty
Hi notioCAL, I have just read your post of 15days ago. I am in the process of attempting to get someone to treat me with Endobronichal valves. Could you please let me know how successfull it was, how you are feeling now. Did you get it done privately or on NHS. Than you
Hi Lavinia. The op's tomorrow morning early, been delayed twice for lack of beds which will tell you it's on the NHS. I'm pottering about, packing stuff for 2 and a bit days in hospital (Bristol Royal Infirmary). There's one final hurdle which is if my Left upper and lower lobes are fused (50% of people) then they won't continue. My consultant says from the scan that they look ok, but the final result will be during the procedure. I'll post more Sat/Sunday but even that's a bit early as it can take up to a week for improvement to show, apparently.
Good luck for today(Aus time) watched Johns video,very interesting.Do hope all goes well for you,& no more delays! xx
PS If the valves didn't work because of non collapse of the relevant lobe (scissure problems I think), is it possible that coils would work? Hypothetically of course.
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