valve in lung for c.o.p.d

[jennamandy]

hello everyone I would like to ask if anyone has had a valve put in for c.o.p.d into the lung.

[Nanny49]

Have read quite a bit about them - all positive. One chap on PR had them and made improvement and they're hoping this continues as they 'bed in'. If you put 'pulmonary valves' in the search box at the top right of the page, you'll find quite a few posts about them. Hope this helps.

[jennamandy in reply to Nanny49]

Yes thank you I am hoping to have them put in I am waiting for a c t scan to see if I can have them so fingers crossed. I will look on the search box so thank you for that.

[Nikkers]

Hi Jen

It depends on what type of COPD you have. These valves (coils,springs) are not yet a completely recognised form of treatment. They are not suitable for anyone who has Bronchiectasis (I know because I was at the Royal Brompton earlier this year) as they can cause infections and have to be removed. Much more work is needed with them before they become a standard alternative.

[jennamandy in reply to Nikkers]

Thanks for that I don't know if I will be suitable anything is worth a try to be able to do the simple things without gasping for air.So fingers crossed .

[notlocal]

I always feel like a party pooper when I respond to posts about valves because I had them fitted in February and they didn't work and no one knows why not. I expect JohnWR will be along soon and good, because they worked for him and others so mine is just a minority report. Was disappointing but am scheduled for LVRS (remove upper left lobe) in the new year which hopefully will do the job!

[jennamandy in reply to notlocal]

I may not be suitable and maybe they wouldn't work im just happy to have a try at anything that will give me some breath in these rubbish lungs of mine .

[notlocal in reply to jennamandy]

Totally. I only give my story to say that sometimes they don't work, but even then there are other things that can be done. Recommend get in touch with Junespoon below too, who had some difficulties post op but whose valves are now working. Tell her Hi from me too!

[FarmerD]

Hello Jenna,I have an appointment in February with Dr.Shah who is carrying out research into valves/coils.I,m hoping I can get fit enough for the procedure,will let you know of developments.It,s at the Royal BROMPTON in London.D.

[jennamandy in reply to FarmerD]

Thanks for that hope you will be fit enough for it. I am waiting for c t scan and lung function so here s hoping . Good luck to you.

[Nikkers in reply to FarmerD]

It was Dr Shah that I saw earlier this year at the Royal Brompton. He's a really nice guy, but not a great fan of the coils. It was also him that explained the downfalls of them to me. I was very looking forward to it when I went to see him, but left with disappointment, so don't raise your hopes too high Farmer. I do wish you luck anyway - fingers crossed. XX

[hallentine47]

No I haven't but some time ago while searching the internet for all things about COPD I came across an animated film showing the valve and stent operations and how they work to expel trapped air from the lower lungs. Sorry I cannot find a ref at this time to help you link. My consultant has discussed both procedures with me for some thing we may look at in the future,

[jennamandy in reply to hallentine47]

Thanks for that I have been looking for info into it but not very much out there will let you know what my consultant comes up with .

[junespoon]

Hi Jennyamandy, I have had the valves fitted in July of this year, 9 in total, the most my consultant has ever done, I am now feeling the benefit , if you would like to PM me.

[jennamandy in reply to junespoon]

Hi junespoon that sounds hopeful im really hoping for some good news these rubbish lungs are getting worse.Just waiting for letter off consultant to go for the scan so here s hoping .Are you breathing easier after the valves being put in? I really hope they make a difference.