Lung Valve Option : Hi to All... - Lung Conditions C...

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Lung Valve Option

petercr profile image
22 Replies

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

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petercr
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22 Replies
cofdrop-UK profile image
cofdrop-UK

Welcome Peter. cx

Damon1864 profile image
Damon1864Volunteer

Hello Peter xx😊

stone-UK profile image
stone-UK

Hi

pulmonx.com/ous/

Click on patients

Then click find doctor.

Click on England.

There is a choice of NHS or Private.

petercr profile image
petercr in reply to stone-UK

Many Thanks

stone-UK profile image
stone-UK in reply to petercr

Hi

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

mrsmummy profile image
mrsmummy

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...

sassy59 profile image
sassy59

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

casper99 profile image
casper99

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

Good luck Peter. xx

O2Trees profile image
O2Trees

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 :)

Watfordgirl profile image
Watfordgirl

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

petercr profile image
petercr

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

sue45 profile image
sue45

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

stone-UK profile image
stone-UK in reply to sue45

Hi

It's on the list

Glenfield Hospital

Mr David Waller

Groby Road

LE3 9QP Leicester

Phone: 0116 287 1471

sue45 profile image
sue45 in reply to stone-UK

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

petercr profile image
petercr in reply to sue45

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

sue45 profile image
sue45 in reply to petercr

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

petercr profile image
petercr in reply to sue45

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

sue45 profile image
sue45 in reply to petercr

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

petercr profile image
petercr

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

Dedalus profile image
Dedalus

Hello and welcome Peter

flo1 profile image
flo1

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..

petercr profile image
petercr

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

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