your experiences would be a great help

[Poppy2525]

I am new on here and sorry if this is not the way to go about finding out but wondered if I could prevail on your experiences. I am 70 and have severe COPD and have been offered Endobronchial valves surgery but since then the hospital has told me they are looking into lung reduction operation as an alternative and is more permanent. My questions are has anyone had experiences of either of these operations and what benefits did you have post operation. I know the lung reduction is more major than the valves but does the long term benefits out weigh this?

[hypercat54]

Hi Poppy nice to meet you. I have had 2 friends - one going for the valves and the other for LVRS. Both said they are very glad they had it done as they are breathing much better. They did of course have issues afterwards such as LVRS taking around 6 weeks to start feeling better and being left with a long scar. And the valves one had continual chest infections for around a year later which is to do with the lungs clearing themselves.

Having said that they both said it was well worth it and they would do it again. x

[Poppy2525 in reply to hypercat54]

thank you for your answer gives me lots to think about

[skischool]

Poppy i have had the valves done and up till now they haven't really worked for me but others have gained upto 20% better lung function and given that it is a relatively simple non invasive procedure and considering your age i would perhaps consider that route first

Hypercats friends continuous infections are certainly not related to the lungs readjusting and are not a normal consequence of the procedure.?

Invasive LVRS is quite a traumatic procedure but others have survived it and flourished so you would have to wait for their stories to make an informed judgement.

Best wishes Ski's and Scruff's x

[Poppy2525 in reply to skischool]

thank you for your frank views, it is a very difficult decision to make. I still work full time and LVRS would put me out of action for much longer. The only problem is I have heard that going down the valve route some people don't seem to have any benefit. I have an appointment in 2 weeks where I will probably have to make a decision. I did have a date for valve surgery but got cancelled. I have been waiting for over a year now.

[skischool in reply to Poppy2525]

Poppy the Majority of patients receiving valve implants do get a significant benefit from the procedure and even if it doesn't work they are easy to remove if not fit for purpose. x

[Poppy2525 in reply to skischool]

thank you for your reply, is this something you have had done? as I would like to hear from people who has experienced both operations which might help me make my mind up, because at the moment I really don't know.

[skischool in reply to Poppy2525]

Yes poppy i had 5 valves inserted into my upper left lobe in December of last year,i have since had another inserted,the object of the exercise is to target a specific lobe and facilitate a controlled partial collapse of the diseased area so that the rest of the lobe and lung can transfer gases more easily,unfortunately my diseased area refuses to budge and shrivel away even though it is now deprived of oxygen and until it does i am unlikely to receive the benefits but for most people this is achieved. and as i say far less brutal than the invasive procedure but i might add not without it's own risks and complications,your consultant will explain all.

[Poppy2525 in reply to skischool]

thank you for being so honest, I do hope it works out for you in the end

[hypercat54 in reply to skischool]

My friend who had valves said it was normal to have repeated chest infections afterwards and she was warned about it in advance. This is because the lungs are expanded a bit afterwards and all the gunk could escape. x

[skischool in reply to hypercat54]

Bev,your friend must have some other underlying condition as repeated chest infections were not indicated in any of the trials and where certainly not put on my list of what to anticipate post procedure?hopefully they will get to the bottom of it ,Gunk and excessive mucus are normally signs of inflammation so perhaps she/he has an underlying bronchial condition as well? x

[O2Trees in reply to hypercat54]

Or did your friend mean the germs could get IN more easily Bev?

[hypercat54 in reply to O2Trees]

No. I quoted exactly what she said. x

[O2Trees in reply to hypercat54]

Ok, but i still dont get it - if the gunk can escape more easily, why would that mean more infections? Id have thought less. But I bow to your friend's greater experience and understanding.

[hypercat54 in reply to O2Trees]

I will ask her again to check what she meant. x

[Dietrech in reply to O2Trees]

If the gunk just sits there, it will get infected, because it’s warm, moist and static! Expectorating sputum is essential for us as COPD sufferers.

[Lizzybetblue in reply to O2Trees]

I can't have a hip replacement due having many UTÌ'S as the germ could attack

I am in agony

[O2Trees in reply to Lizzybetblue]

Im sorry Lizziebetblue - that sounds awful. You should ask your GP for help - there has to be a solution surely.

[cofdrop-UK]

A very warm welcome Poppy. Cx

[Poppy2525 in reply to cofdrop-UK]

thank you, I was told that if I cant find answers here, I cant find them any where. Its just the consultants tell you one thing and them you here something different elsewhere and to make an informed decision you really need the facts from someone who has experienced it first hand. The consultants assistant told me that the lung reduction was only a small cut under the arm and you are only in hospital 5 x days.

[Hacienda]

Hi Poppy & Welcome. I had Valves (4) last June and they worked very well for about 9 months. Tomorrow I go in for a Bronchoscopy to revaluate the valves and Hopefully they will be put right. I never have had any Chest infections since having the valves, also maybe because I take Azithromycin 3 days a week which Keeps the infections away. I am going in at 10am with a Positive Attitude and hopefully will be home in 3/5 days. Like Ski's has said we are all different and some Procedures work for some. Good Luck in your Choice, with the help of your Consultant. Love n Hugs XXXX

[Poppy2525 in reply to Hacienda]

hi and thank you for your welcome. Have the valves stopped working and also when they were working did you see/feel a significant improvement?

[Hacienda in reply to Poppy2525]

Hi Poppy, I have just got home from having the Bronchoscopy. They were doing an exploratory procedure and to rinse the Valves I have, I will be going back in a few weeks to have another valve inserted. Yes, they did work, I hope they work again very soon. Xxx

[Poppy2525 in reply to Hacienda]

thank you for all your input, I am seeing the consultant next week when I have to make a decision. I am leaning towards the valve insertion which was recommended first and as Skischool mentions it is far less invasive

[skischool in reply to Poppy2525]

Poppy i think you have made a very wise decision,the valves may well improve your condition and quality of life and given the simplicity of their insertion which although daunting is no more challenging than an extended bronchoscopy.

Your consultant will want to do some preliminary checks which will include an echocardiogram and what is called a chartis bronchoscopy to check that you are a suitable candidate for the valves,he/she will explain all.

Wishing you the very best of journeys.

Sli's and Scruff's x

[Poppy2525 in reply to skischool]

thank you I will keep in touch

[Poppy2525 in reply to skischool]

Hi perhaps you might be able to help me, someone on here said they take Azithromycin 3 days a week to keep chest infections away. I have had two this year already and as I still work full time in air con offices it seems to knock me back more each time, is it something you would recommend investigating?

[skischool in reply to Poppy2525]

I would talk to your consultant as i am in no way qualified to give that sort of advice,everybody's condition is individual and my condition does not have an inflammatory element to it so i would be the least likely person to have any useful knowledge in that area.good luck with that my speciality is merely in valves for self preservation.

[Poppy2525 in reply to skischool]

ok I understand thanks

[HungryHufflepuff]

Greetings and welcome Poppy. 😊

[Poppy2525 in reply to HungryHufflepuff]

Thank you

[robert1957]

Hello poppy2525 please research magnesium deficiency and symptoms of magnesium deficiency also vitamins vitamins d3 k2mk7

[Poppy2525]

I will do thanks