LVRS: Interested to hear from anyone... - British Lung Foun...

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LVRS

locococco profile image
locococco

Interested to hear from anyone who has had LVRS and how it has affected them good/bad points any information appreciated

16 Replies

Try some of the posts here:

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Hidden profile image
Hidden

Hi I haven't but a friend of mine did a few years ago. She had had repeated pneumonia bouts which had caused a dead area of one lung. She had half a lung taken out and was kept in hospital around 10 days. She was very sore and felt ill for around a month or so but then she said she hadn't felt so good for ages and was running around full of energy. She is still fine and is very glad she had it done. x

jeanlock profile image
jeanlock in reply to Hidden

i had it done 18 months ago, go for it, feel so much better.x

locococco profile image
locococco in reply to jeanlock

You sound so positive just what I needed many thanks speaking to surgeons on Monday 5th op possibly in Jan at the golden jubilee hospital Glasgow

Hi there I had the endobronchial vales for lung volume reduction, I've just been on that slippery slope since breathing worse than ever pain is awful my lung function has got worse had chest infection after chest infection and now to top it all I've developed a nickel allergy full of a rash head to toe with an itch that gives me no peace course what are the valves made of yep got it in one saw surgeon who is going to remove the valves. So all in all my lung volume reduction was a total waste of time I'm just hoping for some peace when they come out .

locococco profile image
locococco in reply to meglou

Sorry to hear it not went well for you they had thought about putting the valves into myself but there is not enough evidence as yes so decided to go with the tried and tested neath I'd for the last 25 years hope you get better soon

meglou profile image
meglou in reply to locococco

Been a nightmare I wasn't able to have LVR the old fashioned way as it's to widespread. When i was back in Cardiff last week apparently only one out of the nine people who had these valves put in has had any benefit but none seem to be having the issue's I've experienced they have got a medical photographer coming to take pictures of the rash as requested by the company who made these valves apparently I'm the first person that's developed an allergy guess someone had to be the first that's how lucky I am. I'm also really scared about going through the procedure again my chest is so much worse than it was the first time round.

locococco profile image
locococco in reply to meglou

Oh sounds terrible hope it all get sorted out for you and I assume the plan going forward will be to remove the valves maybe that will help in itself

meglou profile image
meglou in reply to locococco

The surgeon offered to get them out before Christmas but I asked if we could do it for after Christmas i live on my own and my sister who lives in Manchester can book time of work to come down so the plan is second week in January.

locococco profile image
locococco in reply to meglou

I hope all goes well I am at Glasgow on Monday 5th probably get a date early January for op only doing one side then 5/6 years down the line do other one all the best to you

meglou profile image
meglou in reply to locococco

Well fingers crossed all goes well for you .

one tip,do as much excersize as you can,vales are not the same op as LVR, i had keyhole surgery at ST JAMES LEEDS brill hospital all the best to you.x

locococco profile image
locococco in reply to jeanlock

Yes they are not doing valves thankfully and I exercise constantly I do pulmonary rehab and have been for 4 years now originally I was referred for double lung transplant this has happened twice and I am too healthy and now 4 years later LVRS is an option so all the hard work has paid off thanks and all the best to yourself in the future to x

you sound like me you will feel great,u will be dancing around in a couple of months x

locococco profile image
locococco in reply to jeanlock

Thanks for that it does take hard work but is worth it and I hope to be like you in a couple of months then you do sound so positive and that's what it takes I don't do doom and gloom x

See you on strictly come dancing next year ha ha x

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