British Lung Foundation
33,760 members41,219 posts

Lung Valve Option

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

22 Replies
oldestnewest

Welcome Peter. cx

Reply

Hello Peter xx😊

Reply

Hi

pulmonx.com/ous/

Click on patients

Then click find doctor.

Click on England.

There is a choice of NHS or Private.

2 likes
Reply

Many Thanks

Reply

Hi

From the same drop down list look at clinical trials there appears to be several ongoing.

Reply

Hello and welcome Peter. We have had other members ask about or go through this procedure. If you wish to read more try here:

healthunlocked.com/search/l...

1 like
Reply

I hope you find a hospital to suit your needs and l see that stone has provided information for you.

Good to see you on HU Peter. Xx

Reply

It seems, if you don't ask, you don't get, concerning any dibilitating health problems nowadays.

Good luck Peter. xx

Reply

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 :)

Reply

Hello and welcome,

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.

Good luck with it! Sue x

Reply

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

1 like
Reply

Hi 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.

Regards

Sue XxX

2 likes
Reply

Hi

It's on the list

Glenfield Hospital

Mr David Waller

Groby Road

LE3 9QP Leicester

Phone: 0116 287 1471

Reply

Thanks Stone, Mr Waller is on the list (he's retiring this month I think), but couldn't find info for CELEB trial on there.

Sue XxX

Reply

Hi Sue, It's been a while since your post and it would be helpful to know about your experience with the valve trial. Thanks Peter xx

Reply

Hi Peter

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.

Regards

Sue XxX

Reply

Many thanks Sue.............will keep my fingers crossed for you xx

Reply

Thank you 😊 also, forgot to mention..diagnosed with Lyme disease mid July following a insect bite..was only in the garden for half an hour!! 🙁 XxX

Reply

Stone, Thank you for the additional information, Glenfield Hospital would be a good option for me as I'm only 50mins drive from Leicester.

Reply

Hello and welcome Peter

Reply

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..

Reply

Thank you Flo..................I'm trying to obtain a referral now

Reply

You may also like...