Is this hope on the horizon?

[jeancosfo]

Hi, I'm quite new to this forum and this is my first post.

I'm a 68 year old female with severe emphysema and bronchiectasis.

I'm on home oxygen and ambulatory oxygen for going out.

I was just scouring the internet, as I sometimes do, looking for any new developments for treating COPD, when I came across the following:...

...

22 Dec 2017 - The U.K.'s National Institute for Health and Care Excellence (NICE) has updated its guidelines to include endobronchial valves as an appropriate routine treatment for severe emphysema, an advanced form of chronic obstructive pulmonary disease (COPD).

copdnewstoday.com/.../uk-ad...

Just wondered if anyone else had heard about this?

[mrsmummy]

Hello jeancosfo . It is always good to share information and make sure we are up to date with developments.

[O2Trees]

Yes. My consultant wants to have me assessed in London to see if Im suitable. I suspect not as I also have bronchiectasis but who knows? Worth a go I guess

[jeancosfo in reply to O2Trees]

Good luck with the assessment, it's always worth a go, never say never...

[Alfiebax2]

Hi yes I've heard of this .I have just finished some trials in The Royal Brompton Hospital in London to determine if i was suitable for this op or the bigger op of Lung Volume Reduction Surgery.The upshot is im now down for the bigger op .This op has a higher success rate than the valves and altho im excited im also a little scared. X

[jeancosfo in reply to Alfiebax2]

Hi, That's great news that you're on the list for LVR. I've only ever heard god things about that op. Wish you all the best. X

[Katebeach]

Hi Jean, I am currently undergoing tests locally to see if I am suitable patient for referring to the Royal Brompton. CT scan on Tuesday, fingers firmly crossed. Go and discuss it with your GP to start the journey. Good luck.

[jeancosfo in reply to Katebeach]

Thanks Kate I will, and good luck with the tests, fingers crossed for you.

[ross-35_]

Hi Jean, I was supposed to have this treatment or the Lung reduction, however I have gone past it now, it's to late...so why not try and see if you can be assessed for any help like this, worth a try. I think you have to push yourself, I am now waiting for Lung Transplant, which i hope i will get in time, but it's worth trying ..I wish you well.

[jeancosfo in reply to ross-35_]

Thanks Ross, I saw a hospital consultant last September and told him I would like to be considered for any of the available treatments like LVR. He said he would discuss it with the other consultant there, who I think is his boss, but I've never heard anything back. Maybe as you say, you have to push yourself.

I wish you well for the future and hope you get the lung transplant that you need soon.

[ross-35_ in reply to jeancosfo]

Please push and push Jean! It will be worth it , good luck.

[JasperDylan]

Hi everybody I have had LVR now on both Lungs when I came out of hospital after the 2nd Operation I had to go onto Ambiglatory Oxygen because my levels drop has soon had I move about

With reference to the Valves we tried this in between my two Operations they where great for about 5 weeks but started to go downhill after that they say because of my emphysema and COPD your lungs expand and the air you breath in gets by the valves so they could not perform has they should do you need to ask the question on that one with your consultant

Hope this helps anyone .

[Dedalus in reply to JasperDylan]

Do you think the LVR is an improvement over what you were feeling before having it done (seems you now need oxygen, where it wasn't needed before the op)?

[JasperDylan in reply to Dedalus]

I think the problem was that I should have been using oxygen before my last operation plus when I had the last operation I ended up with a very bad infection and was in hospital for 17 days

My first operation I was in and out in. 7 days

[jeancosfo in reply to JasperDylan]

That was helpful, thank you.

[Alfiebax2 in reply to JasperDylan]

Hi how were you after your LVR ops as ive had good mostly, and bad reports .im currently waiting for a date for my LVR .Am excited and also very nervous . best wishes Barbara x

[JasperDylan]

It certainly helps your breathing and you have got to stick to the exercise the physio gives you they will have you doing breathing exercises a couple of days after the operation

I just wished that the Valve operation I had would have worked out for me because you felt a big difference straight away you are only in for a couple of days I had my first operation in 2010 and the 2nd 2015 they certainly help you have got to give it your best

Good luck with it all

Dougie

[Alfiebax2 in reply to JasperDylan]

Thank you for the info ,now im just waiting for a date . i hope you continue to improve .best wishes Barbara x