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Lung Volume Reduction using Pulmonary Valves. My experiences as a patient.

The following is a transcript of a presentation that I gave at a seminar at The University of Wales Hospital, Heath Park, Cardiff. This was held on November 13th.

THANKS TO MY CONSULTANT AND THE TEAM

I would like to start by expressing my gratitude to my consultant and the team for the skill and professionalism shown when performing the lung procedure on me, and in the aftercare shown in the difficult time I had afterwards. Their confidence and cheerful attitude helped me no end. Thank you all.

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GIFT OF TIME

This operation that I've had, the fitting of pulmonary valves into the upper lobe of my right lung, has been of immense benefit to me, and my wife. Since the operation, my wife has told me that in the opinion of various doctors who have seen me at Bronglais Hospital, Aberystwyth, that my life expectancy was short. That was two years ago. Obviously I'm still here, and my opinion is that it is all because of this operation. So what has changed? No diseased tissue was removed, no good tissue was added. I am not a professional expert in these matters, but I have read quite a bit about lung disease and various techniques and procedures used to try to bring about improvement in the lives of those who suffer. It is my opinion that the procedure alters the the areas of lung tissue in play, increasing the effectiveness of what good tissue we have. I think this is the best option we have now, and will probably be so until someone gets lung tissue to repair or regenerate without producing scar tissue. I hope that success in this is not far away. I live in hope that I will survive until that success can be brought into general use, and applied to me. Until that happens, I benefit from the greatest gift that my consultant and the team could have given me. Time.

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DESCRIPTION OF MY CONDITION PRIOR TO OP

A person who has become a good friend over the last couple of years who also has COPD, described the condition as “Death by chair”. Prior to the operation that definition fitted me to a tee. I was on oxygen, needing about five litres per minute at rest. I was having difficulty walking more than a few yards, and would then need several minutes to recover. Talking for any length of time was impossible. I would regularly have episodes where my breathing technique would fall apart, leaving me gasping, very short of breath, and close to panic. Luckily,my wife learned how to put together a nubuliser, loading it with salbutamol and iprotropium bromide, driving it with O2 at six litres per minute to get me back to a stable state. There were times I think when I must have terrified her.

In that period, I was taking a large quantity of drugs that needed to be taken at various times throughout the day, so much so that I needed a spreadsheet on the computer to keep track, and make sure I was getting the right drugs at the right time, in the right quantities. We also had to be aware of possible conflicts between certain drugs, for example certain antibiotics and multivitamin tablets containing trace metals. My life could only be described as “small”, and reducing.

About a year and a half prior to my op, my local consultant referred me to see a surgeon in Cardiff, with a view to having Lung Reduction Surgery, involving the surgical removal of the most damaged parts one or both lungs. At the end of the interview, he turned me down saying I was nowhere near fit enough. He was quite sure that I would not survive an operation of that magnitude. He sent me away saying that if I got myself fitter he would look at me again. I managed, with the help of my respiratory nurse, to get onto a pilot pulmonary rehabilitation course that was being held at my local community hospital. I considered that course to be a tremendous success. We had a series of what for most people would have been very gentle exercises. For those of us who were participating, they were stretching our abilities quite nicely. We also had various health professionals giving relevant talks and holding discussion sessions. I see these as essential for patients in my situation, because if you know what the problem is, then you can solve it, or at least reduce the effects. It is also important that we don't feel alone. COPD, because it makes us homebound, isolates us, and leaves us lonely. These courses give much needed companionship. Unfortunately, at the end of that course I was taken ill I think with a virus infection, that set me back.

With the knowledge gained from the rehabilitation course, and from ambulance paramedics, I have learned to manage the COPD fairly effectively, in fact, enough to keep myself out of hospital even though I was having breathlessness attacks quite frequently. I also keep antibiotics at home so that I can start a course immediately I feel an infection starting, along with increasing my doses of Prednisolone. My personal opinion about the year or so prior to my operation is that I was suffering from a low level virus infection that did not show on any of the tests done on sputum or blood samples taken through that period. It did seem to clear itself quite suddenly about two months before the op. I just woke one morning feeling a lot better than when I went to sleep. I feel lucky that it has not returned.

I am still not sure who referred me to my consultant but she saw me, and very kindly took me on her list.

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EXPERIENCES IN HEATH HOSPITAL, CARDIFF REGARDING AFTER EFFECTS

When I awoke in the recovery room after the operation, I was told the operation had been unexpectedly successful. Apparently, with most patients, the collapse of the part of the lung operated on usually takes several days. In my case, it was pretty much complete by the time I came out of the anaesthetic. As a result of this rapid reaction, I then suffered a pneumothorax, with a tear in the upper lobe of the right lung. A chest drain was fitted, and I was hooked up to suction. I think it was expected that the lung would start to heal over the next few days. This proved not to be the case. At that time I was taking large doses of steroids, and using a nebuliser four or five times a day. This, I was told, stopped the healing process. X-ray images taken over the next few days showed that when off suction my lung fell away from the chest wall and my breathing became severely restricted. While this setback was occurring, I was finding out the benefits of the operation. An exercise bike was brought to my bedside, where the oxygen and suction could reach, and I found that I was capable of doing what I considered then to be substantial sessions on it, five or six minutes at a steady pace. For me that was a considerable achievement, bearing in mind that pre-op a ten yard walk even with the benefit of O2 at 6 lit/min would leave me gasping and distressed for several minutes.

About a week after the operation, X-rays showed that as well as no improvement in the pneumothorax, the affected area of the chest cavity had migrated, meaning the chest drain was now in the wrong place. A second drain was inserted, and after x-ray examination adjusted for best placement. Two days later(?), as the pneumothorax was still not healing, it was decided to give my chest a Doxycycline wash-out. Not a pleasant experience. Also it did not kick-start the healing process. A second wash-out was tried a week later, successful result this time. I should mention here that between the two wash-outs, after several requests by my consultant I had a consultation with a steroid specialist. This consult resulted in a drastic reduction the amount of drugs I was taking. Some being removed altogether, others being reduced. I believe this review of drugs was at least helpful, if not being a major factor, in the success of the second Doxycycline wash-out. Several days after the successful wash-out, after x-rays showed favourable improvement the drain was removed. A few days later, when healing could be seen to be well established, I was discharged. An expected stay in hospital of about eight to ten days actually turned out to be the whole of February.

Was it worth it? Absolutely! Would I go through it again, with all the complications? Definitely!

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DESCRIPTION OF MY CONDITION AND PROGRESS POST OP

The success of my operation can be seen in a number of different ways. Physically, what happened? The placement of the valves caused a deliberate collapse of part of the upper lobe of my right lung. Previously, the lung was hanging so low that the bottom of the lung was sitting on my diaphragm to the extent that the lower part of the lung was compressed and not able to work very well. Post-op, the lung is now hanging free above the diaphragm. The bottom part of the lung is now performing as it should, and as the condition of the membranes is far better than the closed off section, my breathing is now giving far better gas exchange. This is shown by the different results of tests pre and post-op. An FEV1 test done in November 2011 gave a ratio of 16%. Another test done by the same technician on similar equipment in early May 2012 gave a ratio of 31%. Almost 100% improvement!! I think that since then further improvement has happened as the bottom part of the lung cleared of rubbish and simply got used to being used again. Although I have not had measurements done lately, I certainly feel that more improvement has taken place. Another major benefit of lifting the lung free of the diaphragm is that the sheer effort of simply breathing has been reduced from the major expenditure of energy that it used to be, often without the spare capacity to even be able to say more than a few words. Now I have to be told to 'Shut up'. Benefits come with costs. I have paid for this improvement by gaining about 40 pounds in weight.

Another major influence on my performance has been that I have had cataract removal operations on both eyes in the last few months. This required several weeks of inactivity after each operation while the eyes were in a very delicate condition. Now that the eyes are healed, I can start fitness work again. In the period after the lung operation, but prior to first eye operation, I went through a period of several months rehabilitation fitness therapy at our local community hospital where my performance was documented. I think my consultant was pleased to see these when I visited for a follow-up consult in May.

Before February, I was using oxygen all day at approximately 5 lit/min when at rest. After a small exertion, such as a visit to the bathroom, I would often increase the O2 to eight or even ten lit/min for five minutes or so, to effect recovery, such was the state of my health at that time. I still use oxygen, and the devices that I use are generally set at 4 lit/min. It is worth noting however, that all use nose canular and my portable equipment have conservers fitted, so they only supply oxygen when I take a breath through my nose. I am by nature a mouth breather so I am weaning myself off oxygen gradually.

Drugs and the nebuliser. After a spell in hospital about two years ago, I realised that Spiriva (Tiotropium Bromide, a 24hour controlled release drug), wasn't giving me the supposed 24 hour cover. In fact, I doubt I was even getting 16 hours. So I asked my GPs if I could try Atrovent (Iprotropium Bromide) via nebuliser instead, as it was one of the drugs the paramedics used, being fast acting and, for me convenient to use. The GPs agreed and I then used the Atrovent combined with Ventolin (Salbutamol) several times a day. This was much more satisfactory for me, although it added to the complications of taking my drugs. In fact, for 18 months prior to the lung operation, I was taking such a drug load that I needed to record my usage on a spreadsheet to keep track. The consult with the steroid specialist while at the Heath Hospital was very valuable in reducing this drug load. After discharge from Cardiff, I found I was needing to use the nebuliser less and less, and very quickly relegated it and its drugs to be used only when necessary. I gave up using it at the end of May altogether, just using pocket inhalers only when required. Taking my drugs now is only about four or five minutes twice a day, instead of half an hour or more up to five times a day. For me, that adds up to an incredible change, apart from what the savings in drug costs must be for the NHS.

A further measure of the success of this procedure for me is the fact that I have just returned from a trip to the West Coast of the USA. San Francisco in fact. Just that I could even consider such a trip is fine testament, but to achieve it? Well I can only say that in the most literal sense of the word; WONDERFULL. Because this trip was really for my sister's benefit (she got married for the first time aged 60). We had over 20 of my relations there for the occasion. I had to endure shopping trips of industrial proportions, whirlwind sight-seeing trips, and parties that seemed to go on for days. I came through it all OK. In fact, I learned that my resilience is far higher than I appreciated. Other people who are not used to making allowances for my needs unwittingly caused me to let the battery on my O2 concentrator to run flat several times. This proved not to be such a big deal if I could sit quietly and move slowly to somewhere I could get plugged in. I have to say that I did not meet one unhelpful person in all the time we were in the USA.

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IMPORTANCE OF A REHABILITATION PROGRAMME BEFORE AND AFTER THE OPERATION

As I mentioned earlier, a good friend of mine, who also has COPD, refers to the condition as 'Death by chair'. I have to say that I agree with that statement. Because we get so breathless so quickly, we become very reluctant to be out of our chair and moving about. An extension of this is the way we convert our favourite chair or desk or place at a table into a kind of nest where we organize our small lives into a comfort zone where everything is within arms reach. This is a kind of protection, because when you are ill, who wants to deliberately make themselves breathless? We always remember the last exacerbation, where breathlessness leads to great discomfort and panic. This then becomes a kind of death spiral. Movement hurts. Don't move. As a consequence, our bodies become more unfit, and to do simple things require more oxygen and energy than a fit person to perform the same activity.

If a patient is to undergo any surgery, then it is obvious that a fit person has a better prognosis for recovery than someone who is not fit. But simply saying 'Get fit' to a prospective patient is not enough. Few enough fit people could put a fitness programme together, and COPD patients are unlikely to be fit. There are problems in dealing with COPD sufferers, motivation, equipment, which exercises are appropriate, how much to do, monitoring, and more. So organised exercise programmes are essential. So is education in other matters related to COPD, and the situation patients find themselves in. The structure of a well run course such as the one I experienced a couple of years ago, gives confidence as well as fitness. I found the social aspect of the course to be beneficial. As well as exercise sessions organised as circuit training, we had talks given by pharmacists, dieticians, oxygen technicians, occupational therapists, and others.

The fitness training part of the course was supervised by a very experienced physiotherapy technician with help from other interested healthcare professionals. They always tried to get a one to one ratio enlisting the help of patient family members where possible. The exercises were two minute sessions of gentle exercise where the number of repetitions was recorded, as well as saturated O2 levels and degree of breathlessness. Over a period of several weeks, it became easy to see where fitness was improving, and also where people had problems, for example if someone had a small infection starting, that was otherwise unnoticed. Getting the patient used to this type of programme before surgery has the benefit that after the operation, they are ready to go on getting fitter, and indeed, should be keen to do so.

My thoughts about rehabilitation courses is that they should involve both pre-operative and post-operative patients. This would help with confidence as pre-op patients see the success that post-op patients are enjoying, while going on to higher fitness levels. I would like to see rehabilitation courses become permanent features of selected local clinics. From my perspective, not to would be such a waste.

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IMPORTANCE OF A REVIEW OF STEROIDS AND OTHER MEDICATIONS AT SUITABLE INTERVALS

Earlier I mentioned that while at the Heath Hospital I had my medications reviewed by a steroid specialist. This was the first time that my medicines had been comprehensively looked at in total. Because the treatment and control of advanced or severe COPD involves the taking of so many different drugs, it is understandable that not all doctors have the knowledge to work out the interactions between them, in particular, the steroids. By definition, GPs, who do most of the prescribing, have a general knowledge of drugs. Specialised knowledge would only come from the experience gained by treating patients with specific problems, and where they take a particular interest. So it should be no surprise to learn that after several years of adjustments to my drug regime, things had got a bit out of hand.

The recommendations that were made included:

Reduce Seratide dosage by half. This drug has a ceiling beyond which there is no further benefit, but side effects do continue to rise.

Cut Pulmicort altogether. The effect this drug has is more than adequately covered by other drugs that I was taking.

Pleased that I was using nebulised Atrovent (Ipratropium Bromide) instead of Spiriva (Tiotropium Bromide), because of cost and effectiveness.

Recommended weaning off Prednisolone asap down to bare maintenance level.

I must say here that I have reduced my drug intake considerably since the operation mainly by cutting all nebulised drugs. I have used my nebuliser for three doses since May. That was because of an infection, and that was more for comfort rather than desperate need. For Salbutamol and Atrovent, I now rely on pocket inhalers, but don't even use those very much.

One of the effects of prolonged use of steroids at high doses is the production of cataracts. Since the lung operation, I have had cataracts removed from both eyes, with complete success if I might say. Increased heart rate and blood pressure are problems that other people have suffered, luckily I have not been adversely affected in these ways. Obviously, there are other side effects from these drugs, but I personally have no experience of them.

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CONCLUSION – ENORMOUS BENEFIT OF OPERATION TO PATIENT

To conclude, I would like to emphasise just how important this operation has been for me. Before the operation, I was having a breathlessness attacks at least once a week. These are distressing events, often involving a certain amount of panic. My wife and I learned how to manage these by using nebulised drugs driven by bottled oxygen. These events sometimes happened while out shopping, we must have frightened a few bystanders. Perhaps worthy of note is how rarely people offered assistance. Just to stand up from sitting in a chair was a huge effort. Walking more than a few yards was impossible.

Since the operation, I have managed with, the help of my wife, to regain my life. I am now more able to do shopping, visit places of interest, do some cooking. I am starting to think about driving again. In short, life is getting better for me.

What do I want in the future? I want a method to be found to facilitate tissue regeneration in our lungs, so scar tissue can be replaced with healthy membrane that can pass the required molecules in and out of the body.

In the mean time, I am more than happy to have what I have, thanks to my consultant, and the team, and all the other people that have helped, and that is time, hopefully for the future to happen in.

Thank you for listening.

54 Replies
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When you have read the main post, then watch this video

Johnwr

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Thank you so much for posting this information and i know it took quite alot of your time to post this for us . New information on help for copd has been a long time coming. Bless you Maureen usa

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hi johnwr.im new copd moderate.ive just been reading ur story/amazing that u have taken time out to write it .thank u.i had never ever heard of copd till i was told at xmas i had it.i have had to google everything/but some sites i went on .ugh wont be going on them again.scaremongers /im 63 a mum gran great gran.ceased xmas smoking there and then .dont even think bout the bougars now.i smoked 30yr but that was it for me.now u have had all wat u have had done to u.and i mean all/u have been throw the mill as we say in oldham/that as taken a lot of guts and courage and ur strength /i applaud u as so do many others i should imagine.can i ask now how are u in urself .and can any1 of us get recomended for this procedure thank u for reading this/please take care and god be with u and ur family .

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good morning

thank you for this information i believe it is the best thing i have read on this site, and is very usful

thank you very much

Richard

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you explain and describe the whole thing so well that I understood it !

I am glad to hear how well you are now

thank you for this , it gives us all hope of a better life

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It's great to hear of your improvement. I hope I don't get that bad but it's good to know there are things that can be done to improve ones well being.

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I agree with all your replies,I'm not that bad yet but its comforting to know there are things being done to help us.I do get scared at times,I guess its only natural for us,when we are struggling to breath.thank you for sharing this information with us.

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Hi John

It is so good of you to take the time to share with us. Thank you for sharing your experiences of this procedure, it will be a great help to many.

All good wishes to you for the future.

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Hi Your article was very good to read and gives probably a lot of hope to a lot of people, but I wondered as you say you have a lot of knowledge on COPD I have an ongoing problem that no one seems to be able to shed much light on, so I am looking to seek advice from another lung professional even if I have to pay as I am at my wits end, very briefly I have a severe problem at the bottom of mainly my left lung/top of my diaphragm whereas I get really severe dull pressure (if feels like a pouch !!) hard to describe but when it comes on it really hampers my breathing to such a state that I can hardly move or speak, eventually I start by putting fingers down my throat to start a gipping sensation/suction up into my throat and absolutely loads of clear or sometimes white frothy mucus comes up followed by release of air, gross I know but for a short time it relieves the pressure but it is not long before it starts filling up again, I have had a Xray and CT scan and nothing is showing except a bit of hazeiness ?? at the bottom of my left lung which they say could be just scar tissue, the problem is worse in the night because I am obviously tired and because I have slept it seems thicker and harder to get out, this has been going on for 18 months or more but it really is getting worse, my lung consultant just seems to accept it as part of my copd but everyone else I ask about has never heard of anything like this, I have had camera into my stomach twice and apparantly all seems well in my stomach, I really am grateful if you have taken the time to read this, and any suggestions would be appreciated and I do accept you are not a medical person but you may understand my misery, I am 56 years old and have a young son it is awful for him to see me like this inbetween all that I am really not too bad but it is much worse now and happening on a twice daily/evening basis..

Many thanks, and stay well.

Carol

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Hello carolg1,

I am sorry that it has taken me longer to reply to you than to others. What you said about your problems needed careful thought. And an even more careful answer.

I don't know where in the country you are to be able to suggest who you might apply to for a professional opinion.

From what you describe it seems to me that your lungs (left one in particular) as a result of structural damage are now sitting quite heavily on your diaphragm. This causes creasing, which in turn can cause restriction in the airways. This means that is more difficult for your lungs to expel mucus etc and it will collect and form lumps or plugs. Also, if your breathing technique is not so good, you will not be using the bottom parts of your lungs sufficiently to keep them clear of mucus. While this may be the case, your blood stream will passing out CO2 in this area, hence the foaming in the mucus.

So, what to do. First, try and get your airways open. Do you have/use a nebuliser? If not, see your GP to see about getting one. Use this several times a day with Salbutamol (Ventolin, same drug as in the common blue inhaler). This is a broncodilator and will open the airways. If you use the nebuliser, wait for the drug to work, 15 min or so. If not, a few good puffs of Ventolin, then start on breathing technique. Long, slow, deep breaths in through the nose, out through the mouth, using pursed lips (like whistling quietly). Concentrate more on breathing out than in. You need to clear as much CO2 out as possible. As you go on,you will find that your breaths get deeper and slower. As you bring the lower parts of your lung more into play, it may cause some coughing as you bring up phlegm, so have a bowl or cup to spit into.

If this deep breathing exercise causes you to spasm (makes you gasp for air) rather than long deep breaths, then you probably need to use a 'preventer'.

For most people, once it is established that a preventer is useful, then Spiriva is the usual drug prescribed, because it is a once a day dose. For some people however it does not continue to give 24 hour effect. This happened with me, and I found that I was better with several doses daily of a shorter acting drug, in my case Atrovent via nebuliser mixed with the salbutamol. Your doctor or consultant will need to be involved in deciding this.

Another beneficial thing to take by nebuliser, if you are using one would be saline solution. This would help to thin the mucus,making it easier to cough up. Don't take saline at the same time as the other nebulised drugs though, as it can make them less effective.

Longer term, the fitter you can get yourself, you may find that this problem affects you less, simply because being more active makes you use your lungs more fully.

Try this for now. If you need more suggestions, just ask.

Remember this is not professional advise, and would need to be confirmed by your doctor or respiratory consultant.

breathe easy

Johnwr

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Hi John,

Thank you so much for taking the time to read my note and an even bigger thank you for taking time to reply, Can I just ask your opinion on a couple of more things, one being would my ct scan or xray show my lungs and diaphram coming into contact and also the gunge I bring up via suction is mainly as I say clear or frothy I rarely brink up any what I would call phlegm at all, but the other stuff once I start the emptying procedure which is exteemely large amounts I also catch it going doing the back of my thoat and nose in really large amounts, its as if I have a very very bad PND and it is not passing through my body but stopping at the top of my diaphragm / bottom of lung and the only way I can get it out is via the suction/vomit horrible technique as if something is blocking it from going through my body ??? or is my imagination too much !!, I never would have thought I would be having a conversation like this with a fella !! but I really am having some very scary mornings, as it is much much worse when I have been laying down to sleep, once again thanks John x kind regards Carol

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Hi Carolg1,

CT scan/Xray.

If your lungs are damaged to the extent that they are hyper extended (swollen and hanging low), then as they are sitting on the diaphragm, if it is to the extent that squashing of the lung happens, then the creasing can be seen on Xrays. This is assuming that the Xray is taken with you (the patient) standing. With a CT scan, this would be less obvious, because these are taken with the patient lying down, therefore the weight is in a different direction. CT scans are usually first seen by trained staff and any abnormalities would be noted on the report sent with the scan results.

Haziness.

In your earlier post, you mention a haziness showing in the bottom of your left lung. The first conclusion would be that the haziness is an indicator of either infection or fluid. You should be asked to provide samples for test. I think you should ask at the surgery for several sterile sample jars for sputum, and get some samples over a day or so, and get them to the surgery for testing. Ask them to test for bacterial, virus and fungal infection. This could be a reason for so much mucus, irritation due to infection. Note, only could be.

You say you think this mucus is like a Post Nasal Drip? and should be going through your body, not stopping at bottom of your lung/ top of your diaphragm. If it was in your digestive system, it would go through. Your respiratory system, however, is a dead end system, the entrances, your mouth and nose, are also the exits. Anything that has to come out has to come that route.

I understand that mornings can be difficult, the change from lying down to being upright. Thing seem to need to flow, and in flowing interfere with breathing. Before getting up, if you can, try the deep breathing technique I mentioned in my previous reply to you, and use it to help you recover after getting up.

breathe easy

Johnwr

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Hi carolg1,

Sent you a PM

Johnwr

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Sorry john what is a PM ? x

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Private Message. You can read it on your profile page.

Easiest way to access that is by clicking on you user name at the top of one of your replies.

Johnwr

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Then click on Messages on the blue banner.

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Thank you John.

This procedure sounds similar, if not the same, to the one featured in the Daily Mail earlier this year.

The problem I have found is that the medical fraternity in my area (Lincolnshire) are completely ignorant of it's existence!

Good for you though and I'm so pleased it's made such a difference to your life. Bravo!!

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Hi ciss,

Yes. Exactly the same operation by the same consultant.

Unfortunately, knowledge of new things takes far too long to filter down to GP level. You will have to point your GP in the right direction, and then give them time to do their own research to find out what you already know! The problem you mention is not just limited to Lincs. It is all over the UK. I'm just trying to spread the word.

As I've said in other places on this website, if you have questions, ask. I will try to answer them all. If I don't know an answer, I will try to find out and pass on anything I learn.

breathe easy

Johnwr

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John, thanks for quick response. I have indeed requested more info on this procedure, not only from my GP but also my consultant both of whom professed to know nothing about it.

Lincolnshire, being the laid back and 'slow on the uptake' county that it is, is usually the last to know anything medically significant!

I will, however, take a print out of your post (if, that is, you have no objections) and show the relevent info to my GP and Consultant. Please let me know if this is contrary to your wishes.

I thank you so much for your input and wish you health and happiness!

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Hi ciss,

Carry on and spread the knowledge.

Johnwr

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Johnwr thank you also to you ciss for pointing out the fact that this operation appears to be little known at gp level my own g.p having said "never heard of it". Johnwr and see Perce's blogs on the subject are the only people I have heard of to undergo this surgery and benefit by it however both were unwell and were given the opportunity whereas I suspect any of us who are not at a critical stage (yet) would not be eagerly accepted onto any list for this surgery due to costs. This is perhaps why gp's say they haven't heard of it-who knows. On a personal level I have to be aware that c.o.p.d. is not the be all and end all for busy gps but very frustrating to see that something which worked on the only two people I know about is not available to all. We are all aware that sufferers of this disease are in their thousands and mounting however there should be some kind of structure in place and more information and opportunities given to all.

This site seems to be the only lifeline for many people including myself. Thank you again for your valuable post and your generous offer of further helpful information to those of us who need to know that the progress made by research is being utilised and has some sort of success rate.

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hi

the following link shows it is down to cost rather than knowledge.

nice.org.uk/nicemedia/live/...

I read it cost 2000 € per valve and you require at least three?

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Hi stone,

The document you refer to from NICE was first published 19th Nov 2009. Three years ago. The document refers to 6 studies done prior to that date. Although it does not say so, at that time there were more than 2 types of valve being studied. at least 1 type has been withdrawn. The Pulmonx valve as far as I know is the only one that includes the use of a diagnostic tool to help with accurate placement of the valves.

About cost, with theatre time, consultant and anesthetist fees, ward costs etc, they are about £5000 each, with a minimum charge of about £10K. based on a one week stay. Complications may add to that. As may additional considerations for patients with other problems, notably cardiac.

NICE may have agreed for the procedure to be added to the list of operations in general use, the NHS haven't. I have been given to understand that this is because of a current lack of 'surgeons competent in this procedure'. Work is being done on this by getting new surgeons trained, The seminar I presented my piece to last week was attended by approximately 30 possible new surgeons. How many actually go forward to complete training remains to be seen. Until there are sufficient surgeons, and ward space, and theatre time available, the lack of in depth knowledge at GP level is bit academic. Of course pressure from below will help to get more patient places available, but that is not an instant process.

So, people, go and tell your GP's, and help the push from the bottom.

breathe easy

Johnwr

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Johnwr

When I underwent tests at Brompton during 2008 for LVRS (which I didn't want - I went for EBV tests), the LVRS surgeon told me that IF EBV's ever worked then he would be out of a job!!!

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Hi Jemma,

Well, they certainly worked for me. Just back from seeing my GP. He says I look ten years younger than I did in January, just before my operation.

Johnwr

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Definitely a plus John

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now this has excited me ...ten years younger who needs Plastic surgery :D

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Hi lavender1,

You can find more at:http://bitz-and-bobz.co.uk/copd/

A blog run by a friend of mine detailing his experiences with Copd. Well worth a look at.

Thanks for your comment. We've got to get the message out

breathe easy

Johnwr

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John

Thank you so very much for taking the time and trouble to post your information to the site.

I'm sure it will help many and perhaps we could all take print offs to our GP's/Consultants???

Breathe well, Breathe Easy

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Hi Jemma,

Yes. Do!!!

Johnwr

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Hi lavender & stone,

I do get that it costs a lot for op and that only most needy albeit 2 people we know about from this site are eligible,

but I cannot for the life of me understand why it's only available to the more advanced cases. Surely the worse we get the more the NHS will spend on admissions, GP and Consultant appts let alone treatment, that quite honestly is of no more benefit than a smacked a..e!

Personally I would gladly spend £6 or even £12 grand to be able to live again. But we are not given the choice. If the Medical fraternity know about it (which in my book they should) why is it not offered?

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Hi ciss,

See my answer to stone above.

Johnwr

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Hi John,

Thanks very much for reply - taken onboard.

Ciss

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hi im new to this site as aving being ate diagonised with moderate copd.never heard of it be 4.thanks to my ignorant ex gp ignoring my xray of june 2012.sorry meant late.why is only drug users and alcolics ever mentioned and given treatment and nt qick on the treatment for ppl with copd.or ever mentioning copd.othet wise i would ave heard over the years of copd.well its bout time ppl with copd.stood up and rallied the govenment in 2 shame and do more and get the proper treatment sorted.lung valves,lvrs. etc it will cost them more in the long run with all the treatments inhalers etc than the 1 of cost of valves and lvrs.why are they trying to hide us away.well they will not hide me away.i will ask my new gp what is out there for us and i want it and i will not give up

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This was so helpful. I appreciate the time and care you put into this post. I am in the USA so I will look into possibility here. I am facing surgery for lung reduction due to scar tissue. I. Am grateful for this extensive account of your experience.

I wish all the best to you. Thank you!

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Hello Wizzy-wig,

Have a look at the reply I gave maureenjjj above for details of what you can find in the USA. If your surgery is already arranged, may I wish you the best of of luck for a successful outcome.

Johnwr

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hi thank-you so much for taking time out to inform us on the op and how its helped you regain a quality of life i have been given an appointment via my consultant to consider having this done other option was lung transplant but the cons outwayed the pro,s for me i am so glad i joined this site the other day you,ve gave me info i can go armed with when meeting the consultant who has offered to perform the op , i just needed to speak to some-one who had personal knowledge of the op thanks again it must of took you ages take care and enjoy your new lease of life with your wife and family again

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hi john.ive just read all your story /and im amazed well done to u.up until geting told i had copd im moderate.i had never ever heard of it.i live in oldham but ive since learnt there is a lot in oldham with copd. dear god help us.all wat u have had done is it possible we can have it.also how are u now in your every day life routine wise .do we have to tell gp can we be looked at as a referral for this as im telling my new gp anyway.thank u and take care ,i new nothing at all till i went on this blf site i am learning loads /so i pray there is hope for us all for some sort of cure and relief for us.ive been googling and it seems they have been doing tests and trials for years so why asnt anything been really done ,why are we not told about these things like valves and watave u.is it caus of the money/i worked for 30 yrs in the mills and never asked for anything and brought 4 children up grand children and 1 special great grand child.im asking my gp about a referal thank u .take it easy

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Hello Caroll,

I'm glad you found this article, and that it helped you to understand COPD more than before.

This procedure ( and other lung volume reduction methods) are usually only offered to patients who are at the severe or very severe stages of COPD. Prior to this level of damage, people can generally cope quite well, and if they keep themselves fit, and eat sensibly, and manage to stay free of infection, they can slow the progression of lung damage for years.

Having the valves fitted (or any of the other procedures) does not prevent the damage from continuing to happen. So if the job is done too early, and it later proves that other parts of the lungs have sustained more serious damage, then it would be costly and at some risk to the patient to remove the valves and then to apply new ones elsewhere. Also take into account that if the the patient has some condition that makes other methods more appropriate, most of these other methods are not reversible. So as you can see, these procedures are not undertaken lightly.

So,yes I agree, ask for a referral to a consultant, but do not be surprised if at the moderate stage, you are not put forward for valves or other devices, you will get the benefit of an experienced medical professional attending you. He or she will most likely re-assess your drugs, and recommend an excercise regime, and follow-ups at regular intervals.

Please don't take this as a downer. These procedures are still at the stage where most surgeons are still learning what all the benefits and limits are. Also the type of damage that is present in the lungs has a bearing on which direction your surgeon might take.

I would recommend that you read my other blogs on the subject. The links are:

blf.healthunlocked.com/blog...

blf.healthunlocked.com/blog...

blf.healthunlocked.com/blog...

If you have questions, ask.

Breathe easy.

johnwr

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thank u johnwr.your comments ive taken in,ur rite and i will keep it all in my mind.as u mite have found out in ur early stages there isnt anything or any1 really to advice u on copd shane as from what ive learned of thez blogs and the number of people who have it.you would think it would be all ovrf the news/gps waiting rooms hospitals etc/leaflets on copd.but nothing no were have i seen any such .then agaib happen past an presents governments dont want ppl to no/wouldnt get as much money in there treasury eh,well wont be getin another penny of me ,u take care and a long and happy life to u

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Dear Johnwr,

It is great to read your blog. I am so grateful for the information as your experience answers many of the questions I have lurking in my head about why the specialist wants to wait until the benefits outweigh the risks.

And a great video.

Many thanks,

Cuddy.

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This article was wonderful to read, I alas had no such luck was turned down for this procedure, after taking a 4 hour trip to reach the hospital in London waiting around at the hospital all day to be seen late afternoon and then told no I was heartbroken. Now it is stay upstairs with lap-top as company and chat to the walls. The lovely doctor I had at my local hospital has retired and the new one scratched his back side before he saw me and after a quick check of my breathing asked when I would like to see him next. I did receive an appt. for oxygen level test but that was the morning of the storm and could not leave village as cut off by falling tree,s after calling hospital 3 times and leaving message was sent a letter saying thy would contact me still waiting after 5 months later. Rant over but good luck to those lucky people who are doing well.

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Hello kipper 1910,

I'm sorry it's taken several days to reply to you.

Also I'm sorry to hear that your appointment in London didn't go as you hoped. Usually when someone is turned down, they are given the reasons, and often other options are mentioned as possible alternative solutions. I believe it is rare for someone to get a straight denial with nothing else offered or at least talked about. See someone else at your doctor's practice or respiratory nurse, and try to get more details. There is always another avenue to explore.

It is important that you don''t just give up. Confidence and attitude are your best weapons for being able to carry on.

We can talk more if you want to.

In the meantime, breathe easy,

Johnwr

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thank you so much for this ,i am about to have this operation to my left lung and feel a little less apprehensive after reading your post

Regards

Andrea

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Hi Andrea,

I would recommend that you read my other blogs on the subject. The links are:

healthunlocked.com/blf/post...

healthunlocked.com/blf/post...

healthunlocked.com/blf/post...

If you have questions, ask.

Breathe easy.

johnwr

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thank you johnwr,i shall make a cup of tea and sit down for a good read.silly question here but has been bothering me for a while.I like to travel (mainly europe) how does tis op affect my insurance and should anything go wrong afterwards will countries such as Spain have the knowledge to deal with it...does this make sense? sorry i have just woke up

Andrea x

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a damn good read,thank you,i am having my op done in St James the team headed by Mr kefaloyis are fantastic i have a lot of faith in them

Andrea

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Hello Andrea,

So Sorry I've not replied before. I had a lung infection recently, and that took a mental toll, that left me somewhat unable to put together a sensible reply for you. Well, I've recovered now, so here we go.

Insurance. You will need to declare the operation, just as you should declare the COPD. Also,if you use oxygen, that should be declared. If you fly, you will need to tell the airline. Both the insurance company and the airline will most likely want you to get 'Fitness to Travel' or 'Fitness to Fly' certificates filled in and signed by you GP or Consultant. You need to allow as much time as possible, ideally about six weeks for the formalities to take place.

Be aware, if you use oxygen, different airlines have different policies about oxygen, from supplying it free, atone end of the spectrum, to charging large fees, and I have heard, even outright refusal to allow you to fly. Most airlines have a special needs department who you should contact concerning all this, and they will take you through the process and hopefully make it easy for you. My one experience of flying since the operation was to San Francisco with Virgin. They were so helpful, and provided free oxygen for the flights both ways.

As regards my insurance for that trip, the COPD was not covered, but I was confident in my ability to control my condition, and I took plenty of meds to cover any possibility that I could think of. Happily all went well. If you are travelling in Europe, make sure you have an E111 card free from DHSS to give medical cover.

That's all I can think of for now.

breathe easy, and Good Luck with the op.

johnwr

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Thank you so much So appreciate the read of your experience as I am also being considered for lung reduction surgery. Most enlightening journey you answered a lot of nagging questions Best Wishes to you Mogworth

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Are portable cylinders that deliver 6 litres generally available via the NHS as mine max out at 5. I know that the paramedic got a cylinder from the car that allowed him to nebulise me the way you describe but my full cylinder would not do it.  Thanks. Rib

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Hi

Why have you replied to 3 year old post unrelated to oxygen.

In response to your question I have a cylinder next to me which goes to 6 LPM on continues and a conserved that goes to 6 LPM on pulse. Supplied by NHS.

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Firstly, thank you for your reply.

Secondly, I found this thread because you kindly posted a link to it in response to the latest Moderator post about valves.

Thirdly, this original post mentions the use of oxygen cylinders on a number of occasions. In particular when connected to power a rescue nebuliser.

Fourthly, I considered that a far number of other members would be noticing your very helpful link and would be reading this thread.

As I have the very same two nebs at home with my rescue meds that only work with my mains powered nebuliser I thought a polite post might produce a reply more easily than waiting on the hospital switchboard to ask the clinic answerphone. Especially knowing that my Domiciliary Pulmonary Nurse is off work this week.

Once again thank you for your helpful reply. Especially as you found my post so inappropriate.

Regards, Rib 

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Hi

Not inappropriate in any way, just strange to find it posted where it was

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Hi John we i am new to the forum and just read your post amazing and encouraging to others, Thank-you

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