Lung valves

[Help_61]

Hope all are well as can be .I had 3 valves inserted into my left lung in August since then I have improved from 30/ per cent lung function to 60/ percent It did take awhile but can now shower do house work and walk a bit further and have not used oxygen since then.so if anyone is thinking about getting it done I would recommend it .It will help with everyday chores and improve your quality of life

[sassy59]

That’s great news and hope you continue to do well. Xxxxx

[Corin1950]

That’s wonderful news. I’ll show your post to my husband who’s hoping to have valves fitted. His FEV is much lower than yours was at below 20 but hopefully If he could improve too it would make such a difference to his life.

I hope the improvement continues for you and keep us posted.

Take care

Corin

[Help_61 in reply to Corin1950]

Hope all goes well it takes a while for your body to get used of something foreign in your body don’t expect to much at first .My lungs went from holding 3/12 litres of excessive air to 1/12 my fev1 went from 30-60 and the procedure is over in about an hour I did have some complications but after the got better I slowly improved so fingers crossed 🤞

[Hacienda]

Fantastic News Hun, Wish I could have them again, They did improve me exactly the same as you, But alas, I Can't, Enjoy every moment that has been given to you with your new "Bling" Love. Carolina. xxxx

[Help_61 in reply to Hacienda]

Can I ask what happened?

[Hacienda in reply to Help_61]

They did work for about 9 months, but we are all different. When i thought i woukd have them again. My Consultant said no more procedures. So I am ok now, and getting on with what I can do , not what I can't. Enjoy every single moment with any offered procedure to help us Breathe. Keep us updated hun. Xxxx

[Help_61 in reply to Hacienda]

Did you have them removed

[Hacienda in reply to Help_61]

No, They are still there. Consultant said will only remove if they become a problem ? maybe the time is now?, I will see her on Monday, Having X Rays, so we shall see. xxxx

[Help_61 in reply to Hacienda]

So I was wandering why they are not working

[Hacienda in reply to Help_61]

No One Knows , Still a Mystery, more research to be done, BUT, anything to help you Breathe is well worth the effort to do it. as I said I would do it again. My Lungs are too far gone now, So I manage with my 19% capacity, We are all Different. Go for it. Love . C. XXX

[Help_61 in reply to Hacienda]

So sorry to hear that My specialist said there may be complications if they clog up with phlegm so keeping fingers crossed I hope you find a new method soon 😘😘

[Hacienda in reply to Help_61]

Mu second time I had a Lung wash, this did help, though I am quite dry, don't normally have lots of Sputum. Hope your good and will feel the Benefits of the Valves. Best of luck and stay calm. Love n Hugs. XXX

[Oshgosh]

I’m really pleased you got a good result

[Whitechinchilla]

Wonderful news, thankyou for sharing that.

Well done for your determination and perseverance to improve.

Good wishes from London x

[skischool]

Well Help i am overjoyed that the valves have worked for you,as i have always told others that for some people they can be a life changer.The amount of residual volume reduction achieved, correlates with the effects on FEV1, quality of life and exercise capacity.

Unfortunately unlike yourself and Hacienda whose sadly no longer work i am the proud recipient of 6 valves and they never did or will do anything,but hey ho if we don't try these procedures we would never realise the potential benefits that you have gained.

Enjoy that bling and use it well.

Ski's and Scruff's

[Help_61 in reply to skischool]

Sorry to hear they have not helped I was told they do not work for everyone Just so sad it didn’t work

[Izb1]

This is such good news Help61, long may it continue, enjoy every single moment x

[Dedalus]

That's very good news and thank you for posting, as I have been referred to consultant at Addenbrooke's in New Year re this. Hope you go from strength to strength x

[Help_61 in reply to Dedalus]

Good luck hope all goes well just don’t expect to much at first

[Dedalus in reply to Help_61]

Thank you

[Nicholatracy]

So very pleased for you. Continue to whisk your way thru the housework. You’re doing great 🐞

[Dazbazbez]

Hi just read your post about lung valves, my hubby has severe emphysema and just had another long spell in hospital he has only seen a consultant once and that was 4 years ago, do you have to ask about having lung valves or does the consultant suggest it.he is breathless most of the time and can only walk round the house, i know they dont work for everybody but he would like to at least know what his chances are.

[Help_61 in reply to Dazbazbez]

Yes do ASK I don’t know how it works where you are but usually when your poorly they should Ofer but please ask

[Dazbazbez]

Hi he sees a respiratory nurse at our gp surgery about twice a year ,4 years ago he was very ill and ended up on intesive care up to then he just had a blue inhaler and could get about ,since then he has been as he is now he saw that consultant as a follow up to being discharged from hospital and has never been sent another appointment. He has a trelegy inhaler and has rescue meds for when he gets infections.

[Gladwyn in reply to Dazbazbez]

Does he still have salbutamol .... the blue inhaler (ventolin) ? I have Trelegy Ellipta one puff a day and with it Ventolin 200. one puff 4 times a day.

I have severe emphysema and have never been offered any lung treatments.

[Hidden]

Hi I am awaiting to see if I am suitable for valve placement I am aware of the procedure but am still somewhat anxious and aprehensive

Could you possibly relay details of your experience at the time of the procedure Pain /uncomfort/complications etc If aware of the actual experience I'm sure I might then embrace the treatment without the what ifs

Grateful for any info. Thanks from beardiefolk

[Help_61 in reply to Hidden]

The procedure is only like a bronchoscope very simple but I have had a bad time this month I coughed up 1 valve then a week later had a drain put in my lung cause it collapsed another week later my lung overinflated and could not breathe and now iam still waiting for them to fix it my breathing now is worse than before the procedure

[skischool in reply to Help_61]

Help.i hope that once you are drained things will settle down quite quickly,these complications often actually happen in patients who in the long term gain the greatest benefits from the procedure,it may not seem so at the moment but i hope in the long term this is the case with you,hang on in there and they will get you sorted and soon ,once again demonstrating those initial gains you experienced.

Best wishes Ski's and Scruffy.

[Hidden]

Thank you for your reply I appreciate somebody to get the facts from

Is there a danger of valves being brought up by occasional heavy sneezing or coughing Was it established if the collapse and drain and the later over inflation was directly attributed to the valves

How willoverinflation be fixed

I agree with you ski school----- so often there can be blips along the way with a resulting positive----- iv experienced this when having a colostomy 7 years ago I had initial setbacks but the problems were rectified and all settled down satisfactorily without further hitches

Thanks again I will keep in touch and follow your progress back to full health in the near future

[Help_61]

Not sure as iam waiting for appointment but suggest valves have failed I’ll let you know when I find out but they were working before all this happened and the valve came up by itself no coughing

[skischool in reply to Help_61]

Our airways reconfigure after the procedure and the valve may have become unseated,they are easy to replace and they come in 3 different sizes so possibly a different size may be inserted that will remain in-situ ?

[Help_61 in reply to skischool]

Thanks I hope this is the case