Hi to All................I'm new to the site and have severe copd
I was diagnosed about eight years ago and have been going through the slow deterioration over this timeframe. At my last check I mentioned the Lung Valve intervention and asked if the DR considered a referral for evaluation would be useful. She seemed to be annoyed that I was enquiring about this option and was not very helpful at the time.
She has since sent me a letter saying that if I wish to pursue this option she will provide a referral.
What I would appreciate is any information/recommendations for UK Hospitals that offer this procedure either on NHS or privately.
Thanks
Written by
petercr
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Welcome! I won't be able to add to the info Stone has provided but from my own enquiries to my GP and consultant, Ive always been told that if your emphysema damage is widespread throughout your lungs, then valves aren't appropriate. For those where the damage is contained they can be a great option so go for your referral and see what applies to you. Good luck
Speak to your consultant. You'll have to have had a CT scan, and you'll need a 6 minute walk test and an echocardiogram. Depending on the results of those and on your FEV1 you'll be seen at one of the centres which perform the valve insertion.
Thank you again to all who have responded. I stumbled on this site while I was looking into the valve procedure. Very supportive & informative...............Peter
Don't know where you are based, but I'm currently on CELEB Trial at Glenfield Hospital (not shown on the above list) this is a study comparing lvrs, & valves. I'm due to have valves fitted shortly.
I've not actually had it done yet! Had bronchoscopy & LHS was found to be suitable..but I wasn't feeling brilliant & my already limited fitness had decreased, and then beginning of July, I got chest infection that has only recently resolved. I'm booked in again for pulmonary rehab which will hopefully start in a few weeks & I'm also now following a vit d regime + taking b12..& I feel both of these are having a positive effect. I want to be at my best when having the op so that I am better placed to deal with any problems. I will update on my experience after the op.
CELEB trail at Royal Brompton Hospital, London is conducting the trails for LVRS vrs Valves ..the trail can be found online or have your Doc refer you to the team..directly, ask for Sam Kemp..or Mr Jordon. Good luck, on referral..
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