has anyone had the lung volume reduction surgery?

[loda]

When I was in hospital the specialist said that he was going to talk to me at a later date about this operation and I have had a read up about it on the internet, all sounds a bit worrying but did give me an idea what to expect. I would like to hear from anyone who has had this surgery and how it has effected them for better or worse. Many thanks, Lorraine

[Perce]

I will be soon, waiting for a date for the op as had all the scans and stuff last week, they are now calling it a bullaectomy rather than LVRS as I have 1.7% too much lung function or something, my right lung has a massive bullae so they are going to sort that one out first and think about the other lung next year. It is quite a big op with 8 to 12 weeks recovery but they are telling me it will be well worth it.

[Codysmom in reply to Perce]

Good Luck. I'm in the USA and just starting my research.

[loda]

Hi Perce, thankyou for your reply, Im sure that you will be glad once the op is over for you, so do hope that they wont keep you waiting too long before you get the date.Im seeing the specialist on Aug 8th and having tests etc. dont know if he will discuss the op then. It is a long recovery period tho I thought it was nearer 17 weeks, but s'pose it depends on the individual and how well their body copes and of course age. Im sure you must be anxious but am sure that all will go well for you, It seems that there arent many that get offered this operation, so am bit puzzled as to why. Do hope you will hear soon and please let me know how it goes as soon as youre well enough, luv Lorraine

[Codysmom in reply to loda]

And good luck to you Ioda. Any information that you are willing to share would help a lot.

[Hidden]

Hi Lorraine

LVRS is only done when lung tissue damage is confined to the upper lobe/s. It is the upper lobe that is removed. If damage is in the lower lobes, or generally spread throughout the lung, it is not possible. This is because the lower lobes have the highest concentration of alveoli and are where almost all of the 'gaseous exchange' takes place. Therefore if the lower lobes were removed it would be impossible to oxygenate our blood.

There is no set pattern to the progress of copd - two people with the same fev1 can have very different patterns of lung damage. In many cases smoking will initially inflame and affect the main airways and then proceed to damage the upper lung, before spreading more generally around.

In an alpha1 patient the damage tends to start in the lower lung and work upwards - this is why some people need 02 at a relatively early stage - eg. they may still be fev1 50%, but need 02 because the most alveoli rich area of lung has been damaged first.

Yet another type is where damage is spread around - a little in the upper lobes, a little in the middle lobe and lower lobes.

In my own case there is a little smoking damage to the upper lung and a fair amount of damage to my alveoli rich lower lung. Perhaps from this you can guess that i was a relatively light smoker (little upper lobe damage) but have alpha1 (early onset lower lung damage).

The above is a very rough outline of just some basic copd 'phenotypes' (meaning plain 'type'

in everyday language). However, i hope it answers your question as to why so few patients are suitable candidates for LVRS. On a positive note, the careful selection process means that those who are suited to the op stand a good chance of experiencing a very noticeable benefit to their breathing! Best wishes, Parvati

[Codysmom in reply to Hidden]

Parvati, I'm new with this research. But reading what you said, you would not qualify because most of your damage is in the lower lung?

[Codysmom in reply to Codysmom]

If true, my first step would be with my doctor to find out where my damage is.

[loda]

Thankyou so much for the very useful info, it has told me a lot and have found it very useful in understanding why so few people have been offered the surgery. As I'm seeing my specialist next month for the first time since I left hospital I will learn even more about how this condition is affecting me and also if I will be able to return to work in the not so distant future. At the moment it all seems so uncertain and as I'm used to leading my life at 100mph am finding it hard not being able to hardly do anything ,so if they can offer me anything that will give me a better quality of living then that'll be great. I will let you know what they say and thanks once again for all the info and taking the time to explain it all to me, love Lorraine

[smokless]

Hi my Sister had the op in 2000 not on the NHS . she too lived life at 100mph she was a pratice manager for a mid size lawfirm ,she was back at work in 3 months and yes she got her life back ,she had too look after herself ,stay away from people with cold ,eat good food ,get her sleep and make a point of taking meds ASAP if she felt she was getting a chest infection ,it will not make your lung problem go away but it did give her a much better life and more time . The only thing I would say is people tended to think her lung problem had gone as she seemed so well . if it is right for you and your Dr think your life will be better go for it .good luckx

Jackie

[loda]

Hi Jackie, thankyou so much for the information about how your sister got on after her op, it sounds really positive and will certainly give it a lot of thought if I am offered the operation. I just want my life back and it has gone from100mph to nothing and its very deppressing. I hope that I will be a candidate for the surgery and will certainly let you know what I decide. Many thanks for the info its very much appreciated, luv Lorraine x

[Jacqs63]

I had lvrs on my right lung 7 weeks ago and I will be going back to work this week. I am amazed at the way my breathing has improved. Before the op I couldn't walk very far or hurry. My son had to carry my shopping and cleaning as I got so breathless on exertion. I'm now so much better and have no breathlessness now. I actually began to run for a bus and found I wasn't even out of breath. I had my op (keyhole surgery) on 22nd August and spent 6 days in hospital. Came home and have just been doing breathing exercises to strengthen the lungs. This week I will be starting back on my pulmonary rehab exercises and on Thursday I am starting a phased return to work. I am 63 years old and feel as if I've got my life back. My surgeon also told me that if I find myself getting breathless 2 or 3 years down the line, it will be from my other lung but they could do the same operation on that lung. He did stress that it probably won't be the case but he just wanted me to know there could be. My next step is learning to cartwheel and do handstands again lol. Hope this helps. Jacqs