Lung reduction op!

Has anyone had this surgery?I admit I am petrified as I have read that a lot of peeps have had exacerbations,pneumonia,after having it done..I am in gold stage Emphysema and know I have no option really as my sob is getting worse by the day.I am also suffering with a swollen stomach constantly that labours my breathing,I think it may be the steroids causing this,not sure though..I would be grateful to anyone if they have had this surgery and if you could let me know what it entails...Regards Laura ..

17 Replies

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  • I haven't had it done but if I were you I'd ask your consultant about Endobronchial valves.

    " Endobronchial valves were developed primarily by the start-up medical device company Emphasys Medical (now Pulmonx - Redwood City, California) as a minimally invasive alternative to lung volume reduction surgery for emphysema. In lung volume reduction surgery, a surgeon cuts into a patient's chest and cuts out one or more diseased portion(s) of a lung. Endobronchial valves were designed to replicate the effects of that procedure without requiring incisions, by simply allowing the most diseased portions of the lung to collapse "

    Here's a link where I got the info from.

    en.wikipedia.org/wiki/Endob...

    Also, if you type " valve " in the search box you'll find some who have had it done.

    I hope that helps.

    The Endobronchial valve procedure is also reversible if it doesn't work.

  • Hi porche296, Laura,

    I had a Lung Volume Reduction Procedure done back in February 2012. This was the fitting of endobronchial valves to my right lung. It made an immense difference to me, and the best suggestion I can give you at the moment is to read the first article I wrote about the operation. A link to that is :

    healthunlocked.com/blf/post...

    If after reading that, you want more, either click on my name in the green bar, and look through my activities list, or go to my blog at:

    bitzofme.wordpress.com/

    If you need to, ask questions. There is no such thing as a stupid one.

    Meanwhile, breathe easy,

    johnwr

  • Thank you John.It is 4.am and I have just woken up due to sob, I will read with great interest tomorrow your reply and get back to you..Thank you so much Kind regards Laura

  • I've also had the valve insertions like John above but unfortunately they didn't work for me as the part of the lung that was supposed to collapse didn't. Surgery may be next on the cards! Strength...

  • Thank you for the replies,really appreciate it! The specialist and thread nurse had a meeting regarding my operation and they decided to do the (lvr) coil treatment.Its a new experimental device to achieve lung volume reduction by bronchoscopy on patients with severe Emphysema...Works in a manner unaffected by collateral airflow..

    I was told that there has been a few failures of valves in people in gold stage,so they have opted for this..I am still waiting for a date..

    I am petrified but I feel a lot better by your replies and once again thanks...Laura

  • Hi Laura, I know nothing about this surgery but would just like to wish you the best of luck with the procedure. It sounds like you're going through hell with sob and I really hope you get some relief soon.

  • Aww bless,Thank you Argana for the kind words...Kind Regards Laura x

  • Laura, have you read the link by John of his own experience and how at the end his lung function had almost doubled and he can now get by just with inhalers ?? Well that's one person that the valves clearly work for !

    Then the video link, posted I think by Puff, explaining and clearly illustrating the procedure. Excellent video. So if the coil procedure is considered more effective then the valve one, then it must be pretty good. So it sounds like you have something to look forward to and work toward, Laura. Everything you do now should be helping you get ready for the operation. How long more must you wait and is there anyone you can lobby to hurry things up. Many of us will end up going down this road too, so you are a trailblazer and we are all rooting for you and waiting anxiously to hear how you get on. I've been suffering a lot of SOB lately and your story has really moved me. Have faith in this operation and do whatever little things you can do to prepare yourself and make you even a tiny bit fitter. Love, Argana

  • Yes,read the link with extreme interest..John is amazing and have had a look at most links both coils and valves.. I know its going to be a while before I have the operation as I read that they do all tests on you first to see how well your lungs are functioning(before n after) They have fattened me up with fortijuice as I started to lose weight and went off my food.I cheekily e.mailed my surgeons secretary (no reply as yet) I hope he understands the e.mail is out of desperation!Its a horrible disease,and for each and every one of us sob is so frightening and when the breathing goes damn well petrifying.The progression was the thing that scared me the most, by how quickly it came upon me!Up until last year I was weeding the garden ,even digging (Admittingly hanging on the line post now and again cause of sob) but I was getting by quite nicely.Then out of the blue severe exacerbations without infections or any inclination of why I have deteriorated so fast!

    My advice hun,is to exercise,eat all the right foods,stay hydrated,and keep that smile going!! All the best Laura x

  • There are good alternatives to LVR surgery.

    LVR Valves. I had these fitted in 2011. They didn't work for me &, to be honest, I've only met or heard of just a few they have worked for. I was talking with my consultant just the other day about this & she told me exactly the same.

    I had the valves fitted in my left upper lobe, which collapsed, as expected. In my case my left lower lobe then hyper-inflated into the void, the end result being that I had no improvement whatsoever. I've since been told by one of the UK's top consultants that I was probably not an ideal candidate for the valves. The fact your stomach has 'swollen' indicated you may have similar problems that I had ......which may lead to similar post LVR valve operation disappointments.

    Regardless, click below for more info on the valves.:

    LVR Coils ..... for me, these are a lot more promising. Rather than remove or collapse an entire node, including the good working bits, these coils sort of isolate & compress the just bad bits, giving more space for all the good bits to function .... kind of . Important if, like me, you only have 10% lung-functions to start with, you can't afford to disable any working bits, no matter how insignificant they might seem. I can't have this procedure yet because I've already had the valves inserted ....... I'll have to wait until NICE approval - I'm hoping early next year - but you should be OK.

    Click below for more info.

    pneumrx.com/products-techno...

    LVR - Thermal Vapour (steam)

    Trials are just starting at Royal Brompton for a new LVR method using steam. It's a day-surgery procedure, painless & showing very encouraging results.

    LVR Coils & Thermal Vapour are both happening up at Royal Brompton ...... ask your consultant if he can refer you to the Respiratory Dept at Royal Brompton ......

    Good luck.

  • Thank you ever so much for the information,much appreciated!My specialist explained exactly what you have just indicated..I have been referred to the Royal Brompton,and hopefully I can get a little bit of a life back! At present I have the lungs of a 117 yr old 27% predicted (whatever that means)My breathing goes even while at rest for no apparent reason...I do everything by the book,but I have started to have "panic attacks",but the oramorph and Lorazapam help for a while..I sincerely hope they refer you next year..Thank you for the advice..Laura

  • I was offered lung reduction last year but after considering all the risks involved decided it was not for me, but good luck if you decide to go through with it xx

  • Hi Meike,What risks? and why didn't you go through with it?I really would like to know as it can't be worse than what I am feeling right now! If it helps me breathe a lot better and give me back some quality of life,i am more than willing..I am scared though in case something goes wrong and it will leave me in a worse position than before..regards Laura

  • Hi porche, the biggest risk is in recovery, as the consultants will tell you , and after long discussions with my consultant I thought the risks were too great for me , if they could have said that I would defentley get more breathing space then I would think the risks might just be worth the outcome . I have had over 12 months to think about it and did not make this decision lightly, both my daughters and I hope I have made the right choice. You must consider all the options and then make an informed choice you can read up on the internet all about these operations I cannot fault my consultant and his team for being honest and open with me and they understand my fears and have not tried to persuade me one way or another I hope this helps you Laura please keep in touch and let me know how you are.

  • Good morning porche. Go on Daily Mail web page click health at top scroll down there is an article on coil operation for Emphysema. Tried to copy and paste but cant.

  • Wow thank you sweetheart,Much appreciated!!xx

  • Hi Laura, just wondering how you are getting on and hoping that things might have improved a little.

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