lung volume reduction operation

[Vinny5]

I have been told cannot have the valves fitted into my lungs as severity of my emphysema however another heart/chest surgeon says he will carry out the volume reduction surgery. Has anybody else had this procedure, what was your outcome, how much improvement in breathing and anything else you can tell me. It is a major operation with a high mortality rate so any informed would be appreciated. Jenine

[Skatergirl1]

hi Vinny, I also am not a candidate for the valves as I am allergic to Nickel, which they are made from and my consultant says my only option for the future is lung volume reduction or transplant. I have looked into lvr procedure and it can be done via keyhole surgery and recovery time can be between 2 and 6 weeks. I will be speaking to my copd nurse at the end of the month and hopefully get some more information. Any information from other members would also be welcome 😊

[Belledaisy09]

Hi Vinny5 I've had lung reduction done 5yrs ago but it wasn't successful was told it works for 70% patients 20% slight improvement 10% no improvement I had 5 values inserted in right lung and one ended up blocked , during covid i was left forgotten about till last year when consultant wanted to do left lung as they couldn't fix the lung that had been done as to much tissue had grown over valve so I decided if it didn't work 1st time it's not going to work 2nd time around but have read been successful for some but not for me 63yrs devon uk

All the Best Vinny5 🥰

[49dibs]

I have had LVR on both lungs with excellent outcomes. I have posted replies in the past when people have enquired. Perhaps you can look those up or direct message me.From my experience I would definitely recommend having the procedure done

Wishing you a good outcome

[Trevor6 in reply to 49dibs]

Hi there, dibs so pleased it worked for you, I am 61 , Enphasema 19 years, my late mother had the same , although mine is not gene related. It was suggested to me by consultant over the phone, that I could be suitable, on condition I stopped smoking, put on weight and do pulmonary rehab again, now at this stage i have completed 2 and awaiting appointment for rehab. Last , LVT was slightly under 40% , my question, does this seem to be the route you were offered?

Kind regards

Trevor

[49dibs in reply to Trevor6]

Pre operation I had already completed pulmonary rehab course, had ongoing spirometry tests at regular intervals via my local consultant.I had lost weight through the pulmonary rehab programme and an ability to exercise more freely

I also had an ECG, heart scan and nucleur perfusion test. The latter was done to aid the Robotic LVR procedure

[Vinny5 in reply to 49dibs]

thank you for your very informative info. I have regular spirometer and feno tests, just recently had nuclear blood test, ecg heart scans as I also have arterial fibrillation and high blood pressure so under cardiac as well as respiratory specialists in Paphos. now under heart/chest surgeon in Nicosia. Surgeon wanted me to under go copd rehab course unfortunately I cannot do this where I live in Paphos only place available is in Nicosia which costs me 100euro to go there each time so trying to speak to him to see if absolutely necessary. We are a little behind sometimes although our gesy (nhs) system is good.

[paco19613]

hi

can i ask how severe is your emphysema ? eg; do you know what % lung function you do have ?

[Vinny5 in reply to paco19613]

my lung function is 25% asked specialist this morning when I saw her.

[50shadesofgrey in reply to Vinny5]

hi all I’m new to this and had a lung function test done but was told that they can’t tell me what capacity I have. In fairness no one had said exactly what I have and at what stages. Don’t know weather it’s best not to know but hospital have discharged me and sent me to gp ( who are hopeless) I joined this group hoping to learn a bit more about my condition xx

[Patk1 in reply to 50shadesofgrey]

I've just read Yr bio.welcome to the forum 50shadesof grey.i read u have mild emphysema.the single most important thing u can do is not to have sneaky cigs.also keep as active as u can.try to avoid viruses,colds,flu,covid .they can result in bacterial infections which need to be treat v promptly x

[50shadesofgrey in reply to Patk1]

Thank you pat, I have got to start being more active definitely and am off the fags too. I also need to lose weight as I’ve been eating instead of the smoking x

[Patk1 in reply to 50shadesofgrey]

That's understandable.you can ask gp to refer you to pulmonary rehab to get u started with exercise x

[PaulineHM]

Hi Jenine,

I am not a candidate for LVR or valves as the emphysema in my lungs is so diffuse and I don’t have sufficient working collateral airways, which is what it needed. You need other good airways to be working for you.

Have heard that it has, for those who have had it, worked some and not for others. So it’s a bit of a risk ?

Have you been offered Roflumilast ? I started taking it 2 years ago and it has made a big difference- giving me back about 7 years. It seems it isn’t offered very often. If you would like more info the dm me.

Let us know how you get on won’t you ?

Go well.

Pauline

[Vinny5 in reply to PaulineHM]

what is roflunist. Going to see respiratory specialist this am will ask her. Will keep you posted on op. Thanks for reply. Xx

[PaulineHM in reply to Vinny5]

Hi, ok this is a novel drug prescribed under shared care protocols ie consultant and GP. Consultant prescribes is someone is suitable- not everyone is and once things settle down the GP takes over prescribing. The side effects can take some working through, I almost gave up but got through and pleased I did. It has really helped reduce my cough as well as other benefits. I have weight loss issues some of which may be the Roflumilast ?

bnf.nice.org.uk/drugs/roflu...

Worth having a chat about it with the consultant when you see them.

Go well.

Pauline

[PaulineHM in reply to Vinny5]

Doh, meant to mention that I have added the NICE link for you to take a look at. X

[Vinny5 in reply to PaulineHM]

hi Roflumilast is not available in Cyprus. My specialist seemed to think would not benefit me, still would have liked to take it and see for myself. Never mind.

[PaulineHM in reply to Vinny5]

Oh, sorry to read it isn’t available in Cyprus. Yes, it might have been worth trying to see if it would have helped you.

Go well

Pauline

[Alfiebax2]

I had LVRS in October 2018 . I had an upper left lobectomy . All was good ,recovery was great , breathing a lot better afterwards as well. In fact I'd wish it had been done sooner , I was almost 70 years old when I had the op . I've been doing really well until I caught covid in 2021 and I've been hospitalised twice both times seriously ill. I manage to try to stay germ free but it's taken its toll and my breathing is now poor .I'm on oxygen for 16 hours a day at present and ambulatory when I go out . The op was a godsend but I'm afraid Covid did the irreparable damage. I'm still here though and will continue to fight for however long . I too gad severe emphysema. I wish you good luck in whatever you choose to do Love Babs x

[Vinny5 in reply to Alfiebax2]

thank you. I am 70 and hope my op goes as well as yours. Sorry to.hear about your health now due to Covid. Keep on going 👍👍 did you have keyhole surgery or full cutting?

[Alfiebax2 in reply to Vinny5]

I had VATS , video assisted thoracic surgery , which is keyhole . Good luck with your op . Best wishes Babs