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One year On........

johnwr profile image
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ONE YEAR ON

12 months ago, I had 3 valves inserted into my right lung, in the upper lobe. This lobe had such severe damage from emphysema, that large cavities had formed where there should be alveoli, along with scar tissue. This lobe was not doing very much to help my breathing, in fact, it was hindering the process.

Let me explain. The lungs depend for a large part of their operation on the fact that good lung tissue (alveoli and minor airways, and the blood vessels) are elastic. When good tissue gets damaged, either it heals with a good repair, and all is well, or if the damage is not so easy then scar tissue will form. Think of a cut on your skin, if the edges can be kept nicely together and clean, then the chances are that the skin will repair with no sign of scarring, and soon there is nothing to show that there was any damage. But if the cut was a bit deeper, or on a part of the skin where it is hard to keep the edges together, or the cut becomes infected, then the chances are that the repair will involve scar tissue. Scar tissue in lungs is bad news. Firstly, it is not very elastic, and that interferes with the ability of the lung to expand and contract. This seriously affects airflow in and out of the lung. Scar tissue does not pass gas. So this affects the flow of oxygen into the blood, and carbon dioxide and water vapour out. Like I said, scar tissue is bad news. I sidetracked. Back to the beginning.....

12 months ago, I had 3 valves inserted into my right lung, in the upper lobe. These caused a substantial part of the upper lobe to collapse. Done on purpose. Crikey I hear some of you saying. Why would you do that? I'll explain. Your lungs sit inside your chest cavity, right? Wrong. It's more like they hang there stuck to the inside of your ribcage courtesy of a gooey, sticky, slippery fluid stuff that sticks the outer membrane of your lungs to the inside your chest wall, while allowing them to slide up ad down at the bottom while being fixed in place at the top. In fit healthy lungs, this allows the diaphragm (mostly, the other bit is chest expansion) to drive breathing, by pushing the lungs up and then pulling down. Operating the bellows. So what holds your lungs in their shape, while they are getting pushed and pulled? The internal structure, that's what. In your lungs, the air enters via the major airways that divide and divide again and again until the tiniest branches end in little sacs called the alveoli, where gas exchange takes place. Also within your lung are blood vessels that also divide repeatedly until they are capillaries alongside the alveoli. Add into the mix nerves that sense what is going on, and muscles that control how open or restricted the airways are, and the nerves that control them. All of these various and different parts of the lung have one thing in common, they are elastic. Taken all in all, this tangle of strands has an integrity that gives it sufficient rigidity that without any outside influence, it will just hang there in the correct place. OK. That's a good lung. In good shape. In good condition....... Now damage it. Give it a series of infections. Pollute the air going in with smoke, fumes from fires, fumes from chemical processes, fumes from traffic, dust from concrete, coal, asbestos, flour. Now add in maybe the odd parasite. That lot all conspires(?) over your lifetime to damage the internal structure of your lung. Good tissue gets replaced with scarring. Sometimes, bits of your lung, after being stretched, don't go back. They have lost their elasticity. Also, a lot of your alveoli are so damaged, that they have merged to form cavities. Your lungs sag because of the loss of internal strength and structure. They now sit on your diaphragm like a pair of tired bags. Your breathing now becomes laboured. Every time you breathe out, your diaphragm doesn't just have to squeeze your lungs to push air out, it has to lift a substantial part of the weight of your lungs. Add in the loss of tissue that can transfer gasses in and out of the blood, you have lost a lot of your breathing capacity. Congratulations!!! You've got Emphysema. COPD. Welcome to my world. Oops! Sidetracked again.

12 months ago, I had 3 valves inserted into my right lung, in the upper lobe. These caused a substantial part of the upper lobe to collapse. This caused a reduction in the volume of the lung. Knock on effect of this is that the depth (top to bottom) of the lung was reduced, allowing it once again to hang above the diaphragm. In its proper place. Once again, the bottom lobe was hanging free, instead of sitting on the diaphragm with maybe half of it squashed to the extent that it was useless in that it could not even expand or contract through lack of room. So I now have a lung that is in the right place. Add to that, I have had a chunk of my lung that wasn't doing much, taken out of service, by being sucked shut. At the bottom of my lung, that bit that was sat squashed on my diaphragm is now working again. Not only that, but that bit is in far better condition than the bit that is now not working. The good part of this episode is that my FEV1 prior to having the valves put in was measured at 16% a few weeks before the op. Several weeks after the op, it was measured again at 31%. Figure out for yourself if that measures up to success or not.

So now, where am I? I've got three valves implanted in my right lung. That right lung is now hanging pretty much where it should, and generally working pretty good. I have had a fairly heavy-duty operation (the only other way to get this result would be to have a chunk of lung cut out), without the trauma of major surgery, which I have been told several times, I would not likely have survived. Score one major plus point for my consultants. I am still using oxygen most of the time, but probably actually less than even I think, my oxygen is fed to me via nose cannula, and I often find myself mouth breathing, so not taking all the extra oxygen after all. I notice this when I move after sitting for a while. I am far from optimum. My breathing is better, yes. Because my right lung now does NOT sit on my diaphragm, a lot of the sheer effort of breathing has been reduced. Since the operation, I've put on weight, mostly, I think because of that reduced effort. If I stay on my feet for a while, say 10 or 15 minutes, while cooking or making a sandwich, or doing something similar, I will end up huffing and puffing a bit, and have to sit and take a few minutes to recover. But that is not panic gasping like I would have been doing before the operation. If I would even have attempted something like that. Without my wife doing just about everything for me for those several years, where would I have ended up? OK, so I'm better, but not 'well'. I have been dragged back from the brink of death, but, metaphorically, I'm still on my knees, close to the edge, but considerably safer. Drug use. Much reduced, and I feel better for it. I haven't used my nebuliser since I can't remember when. Do the mental adding up yourself. Was it worth it? You answer.

OK. I had an operation. My breathing is better, my quality of life is MUCH better, my wife is happier. But what has actually changed? I have still got all the same tissue in my body, no bad stuff taken away, no good stuff added. Just a change of emphasis really. Different bits of one lung working. With a big effect. But don't get carried away. My left lung, don't forget that, is still hyperinflated. Actually, it's more hyperinflated than before. With the right lung now hanging right, trim and slim, it's actually taking up less room, which means that having shoved the heart and some other bits out of the way, the left lung has expanded a bit more. That's right, my heart and the parts of the digestive tract that pass through the chest have been pushed sideways by about 40mm and all the associated blood vessel etc. I now get funny questions when I have scans and x-rays. I am also just as susceptible to infections, they knock my capacity for doing anything right back, and I take so long to recover from doing so little when I've got one. So I do what most of you who know do, get on the antibiotics and up the steroids for a few days. As I said before, no bad tissue was taken away, so any extra damage from infection erodes what bit of good tissue I've got left. I have become wary of situations that I consider dangerous to me. Doctors' surgeries and places where children collect.

So what have I really gained in all this? Several possible answers to this, but I think the most relevant one has to be ---- TIME. Without having had the valves fitted, I might still be here, but much poorer in health, or I might not. 50/50 either way I reckon. This extra TIME is giving me more time to annoy my missus, see the girls (children), grand children, and great grand children (two or three, depending on the delivery system at two thirds the way though February). I also have enough spare energy to take up a hobby! Just a bit each week. Large scale modelling of narrow gauge railway stuff. In the garden.

The extra energy means I can do a bit of cooking, and occasionally baking. My wife is perhaps not too keen on this, I am a bit messy in the kitchen, and usually run out of energy beore clearing up, so someone else ends up doing that bit, guess who. Shopping is easier too. I still rely on my little scooter when we know we will be a long time in a shop (think full trolley), but for shorter periods (less than about twenty minutes) then I'll push the trolley and lean on that. I've managed not to get into trouble yet. Life is pretty good for me at the moment, compared to where I've been, I'm gratefull.

This little essay is my way of explaining to those of you who may be offered the valve operation an in-depth look at what you might get. And also to put into context some of the effects that can happen after the operation. All of the above is truly what happened to me, except that I also had a big pneumothorax after the operation. But that was just a complication, it's been described elsewhere. And once sorted out takes nothing away from the success of the procedure.

What about failure? If the fitting of valves does not provide benefit, or indeed if it causes a problem, which I believe is possible if the recipient has other major issues, what then? Well it is reversible. The surgeon can use the same equipment to remove the valves as to fit them. Thenyou just end up back where you started.

If you want to read more about the operation and its effects, read my earlier blogs. A good place to start is :-

blf.healthunlocked.com/blog...

As always, if you have any questions, just ask. I'll do my best to answer them.

Breathe easy, all of you

Johnwr

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20 Replies

Hi, Glad It All Turned Out So Well For You Like Bit About Wife :)

Sound So Positive And That's Got To Help Recovery Not Sure If That's A Road I Wold Like To Go Up ..... But Yes Is A Stark Choice With Only One Answer Really

Glad You Are Doing Well All The Best :)

johnwr profile image
johnwr in reply to

Hi

Got to be positive. So many people have put so much energy, knowledge, effort and sheer willpower into making me better, it would be criminal, no, immoral for me not to. One thing to remember about this episode in my life, the procedure to fit the valves was completely pain free. The only pain I had was for a few minutes when I got fitted with a chest drain to sort out the pneumothorax.

If you get offered this, go for it. Believe me it's worth it.

Breathe easy

Johnwr

martin1945 profile image
martin1945

Hi John

I guess it begs the question - What about your left lung?

johnwr profile image
johnwr in reply tomartin1945

Hi Martin,

I had a discussion with my consultant about this a few months ago, when we met for a review. At the time, we both thought it was a good idea, and I was put on this list to apply for funding. I'm still waiting for an answer on that, but if they come back and say 'YES', I 'm probably going to defer it. I've started to think long term on this. I'm still very much at the mercy of infections and the other causes of good tissue loss. One big hit by say a new strain of pneumonia, or a virus, would take away a lot of what I now consider to be reserve capacity and leave me effectively where I was before the op. By holding back, I feel I've got the left lung in reserve to do something with while seeing about transplant or whatever.

Hope that makes sense to you.

Breathe easy, Martin

Johnwr

meike profile image
meike

I am blown away with you artical, It's takes some of the fear away about this operation, which I am waiting to see a consultant about , I don't know if I will be as brave as you have been because I have a mortal dread of having any operations done its being sedated that gives me the fear, but I will go for it if he offers it to me I hope you keep improving and wish you all the best please keep us informed about your progress x

caroleoctober profile image
caroleoctober

I am also waiting to see the consultant about this operation. Fingers crossed for all of us!

Carole x

sesh123 profile image
sesh123

thats a terrific blog, i will be asking my doc about the chances of having this done

libbygood profile image
libbygood

Really interesting reading your account which has helped me to understand about this procedure.

Lib x

KingoftheCocktails profile image
KingoftheCocktails

Wow!

libby7827 profile image
libby7827

Hi John, thanks for this post, have read all your previous ones with great interest as I am in the state you were in pre op and was turned down for a transplant or lvr 2 years ago as I have osteoporosis which probably would have meant my ribs crumbling during the op. I'm seeing my consultant in about 8 weeks and will be asking about this, although I imagine as it's a fairly "recent" op,funding will be hard to find for all the people asking for it. I take some hope from the fact that all the criteria that fitted you, also fit me (end stage too) so would imagine I'm a decent candidate.Good work with your posts John, keep them up and I do hope you continue to improve and continue to regain some of your lost life. All the best. Libby

johnwr profile image
johnwr in reply tolibby7827

Hi Libby

There are several trials in progress at the moment. One is at the Royal Brompton, I think they are still looking for candidates. I think there is another started at Kings Mill hospital, Mansfield. As your doctor to those if they area reasonable distance.

As regards me, I keep trying. Ask my wife, she'll say I'm very trying. Get your GP or your local consultant to refer you.

breathe easy

Johnwr

libby7827 profile image
libby7827 in reply tojohnwr

Hi John, I'm with the North West Lung Centre at Wythenshawe, my consultant is extremely helpful usually, hopefully he will be able to point me in the right direction. Trouble is, I can never be sure if it will be him or one of his minions that I will actually see, but if I don't get much of a response on the day, I'll write to him. Fingers x'd! L

johnwr profile image
johnwr in reply tolibby7827

Wythenshawe Hospital. The consultant to see is Dr. Barraclough. I believe he has done the implant procedure.

Breathe easy

Johnwr

rememdium profile image
rememdium

Dear John I applaud your tenacity and a very informative letter as you say any improvement how ever small becomes a huge difference in day to day life keep on cooking.

John

libby7827 profile image
libby7827 in reply torememdium

Hi, am happy to see you are still improving after your surgery and hope life gets better and better! :Libby

John

What an interesting informative and positive blog. I am not yet near this point, but of course, barring rogue buses, etc I will be there one day. Information is priceless

Thanks

Bolilly

bewildered profile image
bewildered

Very positive and hopeful thanks for sharing your experience johnwr sure many will find a very useful account of how to live with this disease where improvements are possible.

Jemma profile image
Jemma

Hi John

Many thanks for taking the time to write a further blog regarding your procedure which is very, very interesting.

I do hope the funding comes through and then you will have the choice on whether to progress.

in reply toJemma

what is this about funding coming throw.i am newly diagonised with moderate copd.so im learning everything i can.get no help o f gp r nurse in oldham.why isnt the government doing more for copd research and funding

13lavinia profile image
13lavinia

Hi this was interesting readin, I myself have a giant bullae and emphysema , I have been told my oxygen levels are too low to take the risk of surgery. If the Bullae should rupture they have no choice but to operate. I have been told the valve treatment is not at my NHS HOSPITAL AS YET. But have found out that they do this at Leeds in private, I am going to speak to my specialist about being referred to Leeds. Good luck and keep fighting to you all.

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