ABOUT A SEMINAR AT LEEDS – MINIMUM INVASIVE TECHNIQUES FOR EMPHYSEMA

ABOUT A SEMINAR AT LEEDS – MINIMUM INVASIVE TECHNIQUES FOR EMPHYSEMA

An interesting couple of days I’ve just had. Several weeks ago, I was invited to give a presentation about my experiences as a COPD patient who has had Endobronchial Valves fitted, as part of a symposium at St. James Hospital at Leeds, Friday, 1st March. This event was hosted by Mr. Kostas Papagiannopoulos and his team, who are consultant surgeons in Thoracic Medicine on site at Leeds. The event was organised and sponsored by Pulmonx, the company who make the Zephyr Valves, and the Chartis System (a diagnostic tool). Also there giving presentations was Dr Ravi Mahadeva, another chest consultant from Addenbrooke’s Hospital at Cambridge. The symposium was about Minimum Invasive Techniques for Emphysema. Kostas and Ravi I have met before and I think of them as friends. I think that they appreciate that although not a medical professional, in this area I have done much research online, and I have read a lot of technical papers about COPD and treatments, and can understand what they are talking about. It’s nice to be included by these people who are so knowledgeable, and treated as an equal on a professional level. Both have been involved in the early trials of pulmonary valves since they started in the UK after 2006. Attending this event were just under fifty delegates, which I am told is a good response and indicates how the medical profession is starting to appreciate the developments in treating lung disease. We had surgeons and team members from places that are already doing the procedures, some recently qualified doctors looking to progress to surgery, and others hoping to bring these operations into their areas.
We started early morning with a discussion about how to chose patients for whom these techniques would be beneficial. Various qualifying questions were discussed, and reasons given for why a patient at different stages should be accepted or rejected for treatment, or perhaps defer for decision at a later date. Many of these were about related and complicating issues such as cardiac problems, other lung diseases, or diabetes. It’s a long list.
Next was a discussion about the various treatments now available, and which would be most suitable for a particular patient. These included Endobronchial Valves, sealants, and coils. In the valve debate, two were considered, the Zephyr valve from Pulmonx, and the IBV valve from Spiration. Of the two, the surgeons with experience of both, all came down on the side of the Zephyr. The IBV is on older design that relies on one-way leakage between the valve body and the airway wall, whereas the Zephyr has a valve built into the centre of the body. On sealants, Aeriseal was the only product considered, but not wholeheartedly taken on board by those present. This is new product, and there is not much information yet about trial results. It works by using a two part polymer to create a foam. This is then introduced into the parts of the lung that are targeted for reduction. Over a period of several weeks this first hardens then dissipates either out through the airway or absorbed and expelled via internal routes. Once the foam has gone, the remaining film of polymer then effectively glues the section of lung shut. Questions were raised about discharges in the affected area and reversibility. I think the consensus was that more positive results are needed, but it might prove to have some benefit later. Coils were also discussed. They have been used quite a bit, but as a high number ( 10 or more) are used for each procedure, and they are somewhat invasive, and difficult to remove, they are falling out of favour. It seems the treatment of choice for now is the Zephyr valve.
After a short break, the next topic was a demonstration of procedure by video link from theatre. The subject of the operation was a lady who had had valves fitted some months previously, but several weeks ago, one had to be removed. She had developed a whistling wheeze, and on examination by x-ray, it was thought that one of the valves may have displaced. Further examination by endoscope proved that to be the case, and the valve was removed. Over the video link, we had a camera showing the scene in theatre, able to be moved to show different aspects of what was going on in there, another link showing the take from the scope camera, and two-way audio so the audience could discuss the procedure with the surgeon. It had already been decided that this lady would not have one valve put back into the same place, as that location had proved to be not as stable as originally thought, but a little deeper into the lung, beyond the next branch, they were now to fit three new valves. Techniques were shown of how the airways are measured so the correct size valves are used, how they are loaded into the delivery catheter, then placed. Mention was also made of how important it is to put them in in the right order. In the wrong order a previously fitted valve can occlude the site intended for another. Before the scope was removed from the patient, a little saline solution was used to check round the valves for leakage, and they were visually checked for correct operation. The procedure took about forty minutes, and general anaesthetic was used to sedate the patient.
Then came my turn, a presentation about COPD and in particular emphysema from a patient’s point of view, before and after the fitting of valves. For those interested, I’ve written about them elsewhere, and links are at the bottom of this article. After my presentation, we had a quite lively Question And Answer session. Questions about how I dealt with my pneumothorax from a mental viewpoint, and about the risks involved re the pneumothorax, and the operation as a whole.
Other questions about how I cope with infections, cold weather, rehabilitation courses, the importance of a positive attitude, and so on.
Then came the lunch break, along with many comments from the delegates about how little feedback they get from most patients, and my talk gave them insight into this and made them realise how important this can be in patient care.
After dinner, and another theatre demonstration. This time, it was for a man with emphysema, but also possible complications due to bronchiectasis. The target area was the lower lobe in the left lung. The surgeon started off by showing us a CT scan from which we could see that the fissure area was intact (This is the division between the upper and lower lobes of the lung. One fissure in the left lung, two in the right.), so there is no air leakage between the lobes. Further down the scan, we were shown where there may be bronchiectasis, which shows up on the scan as thickening of the airway walls. The scope was fitted to the patient and first thing done was a Chartis system procedure. By blocking off the airway to the lower lobe and then measuring airflow and pressures, it can be determined if there is leakage between the lobes. If there should be, then that is an indicator against using valves, because no seal can be made to isolate one lobe to deflate it. While this was happening, the technician from Pulmonx, who was operating the Chartis system, explained the graphs on the display, and the numbers on the readout, and how they were interpreted. As expected, the result showed no leakage. After the Chartis tools were withdrawn from the scope, a deeper visual investigation started, and at the site where the surgeon expected to find the bronchiectasis, that was indeed discovered. Also present was a lot of mucus indicating irritation. Samples of the mucus were taken for culture and testing. The surgeon decided to go no further with the patient at this time, and the scope was withdrawn. It was explained that because of the mucus from an unknown source, and the bronchiectasis, the fitting of valves would have induced too high a risk of pneumonia. Therefore the procedure was stopped.
A third patient who had been scheduled for treatment had been cancelled because of infection.
The day finished off with a discussion about dealing with funding committees and cost benefit arguments, and a short presentation about complications and resolving or avoiding them.
The conclusion everyone agreed on was that valves are the favoured solution to advanced emphysema at present, and the other methods may have their uses in particular cases. Thanks were given to all who made presentations and were involved in the theatre demonstrations.

Breathe easy

John

ONE YEAR ON

This article was written in February 2013, and published on the British Lung Foundation Blog.

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. Then you 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

John

Breathing Techniques

First of all, what is ‘Breathing’? This is the means evolved by nature for animals to facilitate the exchange between blood and air primarily of Oxygen and Carbon Dioxide. The lung developed in early animals to do this job in a protected part of the body. The membranes and blood vessels associated with the gas exchange are delicate. Another major function of breathing is controlling how acid (PH level) our bodies are.
In a fit healthy person the lungs have the ability to service the body in extreme activity, while in very challenging environments, such high altitude, bad weather, and bad air conditions caused by chemical fumes, smoke or poor ventilation. At rest, this fit healthy person breathes very slowly, and shallowly. This is as much as they need to do to maintain the body. They are probably using between five and ten per cent of their lung capacity.
When a person’s lungs start to get damaged, whether through smoking, environmental conditions, or illness, the reduction in capacity does not really get noticed until about fifty per cent of that capacity has been lost. As we continue to lose capacity, the importance of breathing correctly so as to make the most of what we have becomes more and more important.
When we consider how we breathe, think about posture. If we are sat, sagging forward with a curled spine, then we are restricting our lungs ourselves, the bottom part of both lungs being unable to expand, and our diaphragm cannot operate properly. When we hold our bodies straight,whether sat or stood, with an erect spine, then the lungs and diaphragm have room to function.
The next thing to consider is that if we are not breathing, and are relaxed in an upright attitude, then the neutral position of our lungs is that they are between half and three quarters full. Then it stands to reason that the easiest first movement is to breathe out. So when in difficulty with breathing as we get with COPD, we need initially to concentrate on breathing out, to make room for a useful inward breath.
Now let us consider how we breathe in. When all is well, we are relaxed, not demanding much oxygen, then we tend to breathe gently in and out through the mouth. This just uses the very top part of the lungs, using chest expansion by the ribs and associated muscles. This is not very efficient, but for most people at rest, it doesn’t need to be. Next, let us think about breathing gently in through the nose and out through the mouth. This brings more of the lungs into play, and is starting to get the diaphragm working. Better than mouth breathing, but when those of us with severe COPD get into trouble, it is not enough to get sufficient oxygen into the blood stream, and carbon dioxide out. To do that we need to breathe out through pursed lips. Think of trying to whistle. Then shut the mouth and breathe in through the nose. Then out again through pursed lips. Sit up straight. Shut the mouth. Breathe in through the nose. Practice this when we feel good. You can feel the diaphragm working. Breathe long, and deep and slow. Those of us with a pulse oximeter, if we put it on before practicing deep breathing, will see that our resting O2 level is probably low to mid nineties. Now start deep breathing, it will take about a dozen or maybe as many as twenty breaths to get full use of the lungs. Watch the meter, over a period of a few minutes, you should see an increase of three or four per cent. Keep it up for ten minutes or so, and we feel good, but this is taking effort. It is difficult to sustain for long periods, and concentration will start to lapse. So doing it all the time is not what we need, neither is it natural. But for those of us with limited lung capacity, it is a good idea to practice the technique when we are well so that when we get breathless and struggle, we have something to help get us back on an even keel. Most of the time, we have a wife, husband, partner or carer near us. If they know the technique, when our breathing goes wrong, they will have something to help us with, getting us sat, reminding us to breathe in through the nose, blow out through the mouth, watching us, telling us. When we panic, it is difficult to think right, and we tend naturally to gasp through the mouth, and we need reminding of the best way. Be tolerant of those telling us, they are trying to help us. If you are in the carer role, be tolerant of your patient, in a breathlessness event, they are going through a difficult time.

While we are doing our good breathing technique, what is going on inside our lungs? Probably not quite what you think. In the middle of a deep breathing practice session, each breath in takes about four seconds, and a breath out about the same or a second or two longer. The diaphragm is working properly. All is good. As we breathe in, there is some chest expansion and the diaphragm pulls downwards, making the lungs expand and lowering the pressure in them, causing air to enter from the atmosphere. This is important, the lowering of pressure, I mean. Because of the lower pressure, carbon dioxide is encouraged to leave the blood stream, pass through the membranes into the alveoli (the small sacs at the ends of the smallest airways where the gas exchange takes place). When we breathe out, the chest contracts, and the diaphragm pushes up to make the lungs empty. The pressure inside the lungs increases, especially if we use pursed lips to cause a constriction. This is how we blow balloons up. Inside our lungs, the increased pressure pushes oxygen through the membranes to be taken up by the blood stream. This is not how we normally associate our breathing with our lungs and blood stream exchanging oxygen and carbon dioxide. Usually we think of it as the other way around.
When we get a problem with breathing, it is usually because our technique falls apart, the diaphragm not working properly being the usual reason. How can we help ourselves avoid emergency situations due to breathing. Be self aware. When we first sense that something is going wrong. Stop. Sit. Try and relax. When you can, if need be, move to where there is fresh air. Use this deep breathing technique. Use your inhalers. If you don’t regain control quickly, get someone to call an ambulance.
When ambulance staff or paramedics attend someone with breathing difficulties, their standard procedure is to first of all get oxygen going into the patient, then to get a nebuliser going.
The nebuliser will normally be loaded with salbutamol (Ventolin) and Atrovent (Ipratropium Bromide). Salbutamol works by acting on receptors in the lungs called beta 2 receptors. When salbutamol stimulates these receptors it causes the muscles in the airways to relax. This allows the airways to open.In conditions where there is narrowing of the airways, such as asthma or chronic obstructive pulmonary disease (COPD, eg emphysema and chronic bronchitis), it is difficult for air to get in and out of the lungs. By opening the airways, salbutamol makes it easier to breathe. Ipratropium works in the lungs, where it blocks other receptors called muscarinic receptors that are found on the muscle surrounding the airways. A natural chemical called acetylcholine normally acts on these receptors, causing the muscle in the airways to contract and the airways to narrow. Ipratropium blocks the muscarinic receptors in the lungs and therefore stops the action of acetylcholine on them. This allows the muscle around the airways to relax and the airways to open. This makes it easier for people with asthma or COPD to breathe. The combined action gives a rapid response that quickly leads to easier breathing. With the return to more normal breathing, relief soon brings a feeling of being back in control and you become calmer.
After you are stabilised, you will probably be taken to hospital for tests and observation. At the hospital if infection is found you will be given appropriate antibiotics, and a drug regime established or your current one reviewed. The most common result is you leave with a bag full of drugs including Ventolin, Spiriva, Uniphylin tablets, and others to deal with side effects. The important one with regard to the subject of this article is Spiriva. This is drug is closely similar to Atrovent being intended to help your body maintain good control of your breathing. The difference is that Spiriva is intended to be a one dose daily drug to give 24 hour cover, whereas Atrovent is quick acting but short lived in the body. If you have Spiriva prescribed, take it, once daily. Do not take Spiriva and Atrovent on the same day, except under medical supervision.
I hope this article help you as patients or maybe as carers to understand what goes on when we breathe, and to be able to help ourselves or our charges when it goes wrong.

Remember, breathe easy,

John
PS. I am not a medical professional. I am writing this to try and fill a gap in general knowledge about COPD. If I have written something wrong, say so. We all have something to learn, especially me.
PPS. The PS above was proven when a comment made me check The actions of Ventolin and Atrovent. I have now amended the article to give the correct information. 

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 2012.

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.