HI EVERYONE DOES ANYONE HAVE EXPERIENCE OF ENDOBRONCHIAL VALVE PLACEMENT IN THE LUNG TO IMPROVE FUNCTION ---- I HAVE EMPHYSEMA WITH AN FEV 1 OF 24% AND GENERAL DAILY ACTIVITIES ARE GREATLY RESTRICTED
I HAVE BEEN CONSIDERED FOR THIS PROCEDURE AND WOULD APPRECIATE ANY GOOD/ BAD COMMENTS YOU MIGHT HAVE TO HELP ME COME TO A DECISION ABOUT PERSUING THIS LINE OF TREATMENT
ANY INFO WOULD MOST APPRECIATED---------THANK YOU SO MUCH
STAY SAFE REGARDS----- BEARDIEFOLK
Hi quite a few people on the site have had this procedure done,for some it has been successful and they have achieved a better quality of life and an improved lung function,for others they have recieved partial succes that hasn't lasted or as in my case no benefit at all due to the fact that the whole process is designed to produce atelectasis of the diseased lobe of the lung(a collapse of the diseased area)but in my case even after the insertion of extra valves making six in total this never happened.
The whole procedure is relatively safe without too many serious complications and i would whole heartedly recommend others to take advantage if they are offered the chance to undergo the procedure.
You will do well to research more indepth articles on the process and your eligability on various post that have been put on this site previously by myself and others.
Best wishes Ski's and Scruff's
THANK YOU SKISCHOOL FOR YOU PROMPT REPLY ---- I DO HAVE SOME ANOMOLIES THAT HAVE BEEN DOCUMENTED BY YET A THIRD SO CALLED CONSULTANT THAT JUST DONT SEEM TO RING TRUE TO THE DATA THAT I HAVE GLEANED FROM ACTUAL PATIENTS AND MY OWN INVESTIGATIONS
IF I COUD REPLY TOMORROW WITH A COUPLE OF BASIC TREATMENT QUERIES THAT I DONT FULLY AGREE WITH MAYBE YOU COULD PROVIDE ME WITH YOUR THOUGHTS AND ADVICE
THANK YOU SO MUCH BEST WISHES ----- BEARDIEFOLK
Please turn your caps lock off 
you will need to undergo a chartis bronchoscopy to ascertain that air doesn't leak between the lobe being treated and another lobe,this is called collateral ventilation and it needs to be negative for the procedure to work,if it is positive the procedure will be declined,you will also need to have an echocrdiogram to check out your heart amongst other things such as being fit and healthy enough to undergo the procedure.
Hi again There seems to be two bones of contention with the communication from my consultant if I am accepted for the procedure by COPD MDT panel
a) the taking of long term antibiotics. I can accept the taking of antibiotics in the lead up and post procedure for a while but it was suggested that I might need to take them for life?? Is this normal and was this mentioned to you at any time
b) it has been stated that this is not a one stage procedure but done in multiple stages. In my case may require six sittings over 6 - 12 months. Seems a long way from information suggesting an hour or two.
Further there seems a need for liver function full blood count and CRP every month for three months then every three months thereafter.
These are the three areas that concern me and need enlightening on. It seems so long winded. What are your thoughts and experiences if you dont mind me asking otherwise I can put it out on the general forum and ask other members to comment on my concerns
Thank you for your input---- regards beardiefolk
The taking of antibiotics may be down to the nature of your condition if it has an inflamatory element so that might be an individual need if you have frequent exacerbations but normaly people with frequent exacerbations are not usualy candidates for the procedure.
As to the liver function tests once again if your liver has been suspect in the past i could understand but it is not something i was asked to have.
The procedure should be completed in one session lasting approx one hour dependant on the amount of valves to be inserted,if they are thinking of treating both lobes then a delay of approx 6 months might be expected to see how you perform with the initial procedure,the valves can be reseated if required as sometimes they move in the airways but repeat procedures are not normal.
i hope that answers your queries.
Thanks skischool for you comments and feel right to have concerns with the info he gave me I dont suffer any exacerbations and to my knowledge have no liver or heart probs ---- surely this would have surfaced in the various pre procedure tests iv had done-- seems more like the comments for a lung operation
curiouser and curiouser
Do any other members have any comments to make
I appreciate your replies
I had this procedure had 3 inserted only took 1 hr and take azithromycin 250 mg three times a week to help with infections
Hi Beardiefolk,
Like you, I applied to receive EndoBronchial valves in the gorgeous new Golden Jubilee Hospital in that’s only a few miles from where I stay. I had all the tests but when the results came back, I showed that my lungs where far too damaged to receive the valves, so I’d have to wait for a Lung Transplant unfortunately.
I had heard all the marvelous miracles theses EndoBronchial valves had worked on patients. Even at the end of the study and they where all asked if they wanted then removed, all of the answers were yes (some with a few sweary words in there too I heard lol Mr Kirk The Consultant told me).
Pam
Had it done in 2019 worked for awhile but had one come up then had lung drained,then hypoinflated lungs Had it replaced 3 weeks ago and as yet have not had the improvement as the first time but it can take awhile to get However I would recommend getting it done cause if it works for you it’s a big improvement so go for it
Good luck 🍀 to you Beardiefolk if you decide to go for the procedure. From what I and thousands other hear, you won’t regret it. All the best to you xXx.
(I sent my last message before I had put this bit in).
Greetings
I had the valve implants two years ago, with very limited success. Only tiny parts of my lung collapsed. I was out of hospital an d at the gym two days later.
A man I know from the same respiratory unit had a very successful experience, but after three years, said his lung function was deteriorating. he'd had three brilliant years, though..
I think you have to suck it and see. I hope your results are wonderful !
Cheers
Catnip
I forgot to mention lung function went from 30 percent to 75 SO BIG IMPROVEMENT
I had two valves inserted 5 years ago (early 50s) and nothing happened for two years. Then suddenly I started to feel less breathless and within a few months the hyper inflated lobe was deflated to a very tiny lobe. I felt great even though I only gained 10% extra lung function as the rest of my lungs are badly damaged. I did notice that since the valves were inserted, every winter I had around three severe chest infections and the consultant said they were around the valve area.
Then a year ago I had a cough and started to feel more breathless within weeks. After CT a scan and broncoscopy the consultant said the valves had moved and the lung was inflating again. They could not move or remove the valves as they were so embedded in the lung tissue. I had a lobectomy to remove the hyper inflated lobe with the valves. I am still recovering from the recent surgery so cannot comment on how successful it has been in reducing my breathlessness.
I don’t know if my situation helps, but it’s been 5 years since the valves were inserted, so quite a long journey. I really don’t know if I would or wouldn’t recommend them.
Hi, I have gone through all the scans and tests required for the valve placement procedure and all has gone well. Perfect candidate. I have now been told that the NHS has taken away financial support from this procedure. I don't believe that. Do you know anyone who is being offered the same.?
Hi I'm waiting for valves to be put in before the winter waiting for phone call 19th July see what he says then
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