BRONCHIECTASIS AND COIL/VALVES

[carolg1]

Does anyone know or have had the coils or valves fitted when having severe COPD bronchiectasis /emphesema in general poor health ?? x

[Hidden]

Hi Carol, I have very severe bronchiectasis and a lot of problems with sob. Asked my consultant about valves and coils when I was in hospital recently and he said I wasn't suitable for either procedure. But everybody's case is different so you should ask your doctor or consultant . Good Luck !

[carolg1 in reply to Hidden]

Hi Argana, can I ask what reason they gave you so I can be a little prepared, I at the moment have a neverending mucus problem masses every day !! I am just told thats the nature of the beast ?? x

[carolg1 in reply to carolg1]

Hi {eeg

I hope so thanks cx

[Hidden in reply to carolg1]

No reason given Carol - just a straight up No. He did however mention that transplant would be the option to consider , down the road a little. I think I probably don't have enough healthy lung tissue to benefit from coils. But make sure to ask and see what response you get.

[carolg1 in reply to Hidden]

Thanks Argana xx

[Colours23 in reply to Hidden]

Did u ask WHY?

[peege]

There are a couple of people on here who have had the procedure. Hopefully they will see your post. Take care. P

[notlocal]

Hi CarolG, Had the valves in February but they didn't work = no improvement in lung function. I'm now told that I possibly have a leaky valve ( ) and have a bronchoscopy in 10 days time to check. If that's so, and if they replace it then the whole thing may work after all. I'd given up on it tbh.

The reasons why/why not for being suitable for valves/coils are many and various. For a start valves and coils are different and have different criteria. Coils haven't been cleared yet, although I think the Brompton in London is running trials. If you are suitable then there more tests. The whole journey starts with your consultant. Speak to him. Good luck!

[carolg1 in reply to notlocal]

Hi notlocal, I live in south yorkshire so Royal Brompton not in my neck of the woods, but i definitely would travel for help, someone mentioned that too much mucus is a no no as it would clog valves up, thanks for your input x CarolG

[jeanlock]

im going to LEEDS st james at the moment 2 more tests then they will tell if i can have valves ask your doctor to send you x

[carolg1]

Hi Jeanlock, I am a past patient of St James Hospital for treatment I have had to a small cancer on my lung, who is your consultant there that may be a good path for me to go Thanks x CarolG

[FarmerD]

Hello Carol,I have severe emphysema my consultant referred me to the Brompton to find out if I was a candidate for valves.The consultant there has said I may be a candidate for lung reduction if I can get fit enough,so I think it depends on who you see and how hard you push.It is your right to get the best possible treatment so push,push,push.Good luck.D.

[FarmerD]

Hello Carol,I have severe emphysema my consultant referred me to the Brompton to find out if I was a candidate for valves.The consultant there has said I may be a candidate for lung reduction if I can get fit enough,so I think it depends on who you see and how hard you push.It is your right to get the best possible treatment so push,push,push.Good luck.D.

[carolg1 in reply to FarmerD]

Hi Farmer D,

Thanks for the reply and the info I will certainly try and push I think they wait too long the consultants , then you get worse and the options are then less !!,

Kind regards Carol x

[out-for-lunch]

I had the valves done almost 4-years ago. They didn't work for me either. It seems they haven't worked on a lot of candidates,

With me, yes, they did their job of collapsing the chosen lobe, but the cavity it created was quickly filled up with non-functioning parts of remaining lobes. Long & short of it, as a 'retainer' filled with sticky mucus I wasn't a suitable candidate for valves.

I am now told coils are apparently far more appropriate for me. Problem is, now I've had valves fitted I can't have them removed & replaced by coils until after the nice folk at NICE approve the procedure ..... & meanwhile my condition deterioates.

My advice ....... be very careful what you ask for. Research & second opinions all the way. With copious volumes of sticky mucus you'll have heavy lungs ...... my guess is you may have a similar problem with valves as me.

[carolg1 in reply to out-for-lunch]

Hi out for lunch

Thanks for that information , my lungs feel like Ive got too bags of sand sat on my diaphragm or something like that, after wretching what feels like from my stomach loads of sticky mucus they feel a bit easier, wish I could find a cure for us !! thanks again .

Regards Carol x

[jeanlock]

hi carole im under MR N CHSUDHURI at St James Bexley Wing seems very nice going for one of my tests next monday x

[carolg1 in reply to jeanlock]

Hi Jeanlock, Good luck with the test would you keep me posted and let me know what you learn etx, thanks xx Carol

[jeanlock]

will do carolg take care x