TWO ANDA HALF YEARS ON, AN UPDATE.

As some of you know, back in February 2012, I had 3 Pulmonx valves fitted to the upper lobe of my right lung, as a means to achieve a reduction in lung volume. The op was an enormous success, giving me a huge increase in my capacity to live a life. Basically my FEV1 increased from 16% to 32%. I’ve written about it, and you can find that in other articles on this blog
I thought it was time for an update, so here we go………

The new life takes some getting used to. I found that the best way is to forget about fast breathing, as it only causes some air trapping, that then needs some controlled breathing to get rid of. It’s only useful when doing a function test, and then only for checking the elasticity of the lungs. For me, it’s long slow deep breaths, but concentrating more on getting a good , steady out-breath, and every so often at the end of the blow, blow out a tiny bit more. Low air pressure, associated with bad weather systems affects me, increasing the need to blow out using ‘pursed lips’, to increase the pressure in my lungs. Breathing in looks after itself, just try to do it through your nose.
For those thinking about going forward for this, or any other procedure, this is not a cure. It is an intervention intended to give an increase in capacity by shutting down a bad part to allow the better parts more room to operate. Remember that the damage to your lungs will continue, due to inflammation and infection. So avoid doctors’ surgeries and children!!!! (As if you can, ha ha).
The aftermath of the valve op, and indeed, the use of coils is largely uncharted territory. There aren’t very many of us yet, and the aftercare is largely guesswork. GP’s as yet have nothing to guide them, so I see my docs treating me as a patient with fully functioning (or nearly so) lungs. So a sputum test result which shows a ‘normal’ loading of bacteria or fungus spores is put down as ‘of no consequence’, whereas, for me with about 25% of my lungs working, it actually translates to 4 or 5 times more serious than for a ‘normal’ patient. That, I call significant, to me.
Keeping as fit as you can is important, as is pacing yourself. I am finding that as this progresses, more changes are happening. Some of the drugs I was taking before the op, I have dropped off, as the symptom they were treating has changed. I find that taking a NSAID morning and night helps to reduce lung inflammation with little or no side effects, just as well as steroids did with side effects (cataracts, aggression, and appetite). In fact, I would recommend that everyone with advanced COPD get a drug review every two years or so. Symptoms change over time, and so does the need for specific drugs.
Now, how am I? I’m feeling pretty good. But (always a ‘but’ isn’t there?) the damage continues. I did another seminar at Cardiff in May, and as part of the day’s proceedings, a CT scan that I had the week before was put up before the delegates. Wow. What a revelation. This was discussed by a couple of very eminent Professors of Thoracic Surgery, (one from France, Prof Pison from Grenoble Uni Hosp), my consultant, and about ten other surgeons in the audience of approx 60 medic professionals. Most noticeable was the difference between the depth of the lungs, because of the valves. But also the degree to which the damage had continued. I now have big cavities in both lungs (a bit bigger than golf balls), so the discussion centered on where to go from here. The final consensus was actually to do nothing, having considered valves, coils, reduction surgery, Bullectomy, and finally transplant. So here I am, not feeling bad at all, but aware that my condition can best be described as ‘Brittle’. I reckon I am probably two years past my ‘Throw it in the bin’ date. So me and the family are definitely winning.
Would I go through the op again? Oh yes. Absolutely!!!!
Would I recommend it? Yes, provided it is suitable for the patient, and that the patient is suitable for the op, Whether it be valves, coils or reduction surgery.
May I wish you all, similar long term success, whether it comes from drugs or surgery, or just plain keeping fit and eating well.

All of you out there, breathe easy.

John

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Coils, some info.

A couple of days ago, in a different place, I answered a request for info about coil implants. I thought my answer might be relevant here, so here it is.

This could be a fairly long answer so please bear with me.
My own position is that I had valves to my right lung very successfully in February 2012. I give presentations at medical seminars to give a patients perspective. I am not medically trained.
Yesterday (Tuesday, 13/05/2014) I was at a seminar in Cardiff about the Modern Management of Emphysema. Part of that seminar discussed surgical and associated methods of intervention, and coils were discussed as part of that. Valves and coils are used as alternatives for Lung Volume Reduction from surgical methods where diseased parts of lungs are cut from the chest. From where we were several years ago to the present, many advances have been made, particularly with regard to the use of valves and coils, and the management of patients after these devices are fitted. Valves received early acceptance, because they are easy to implant and have a much lower impact on the patient, and importantly, should they prove to be causing problems, they can easily be taken out. These valves are little one-way valves that are set to only allow air to pass out of the targeted area of the lung. This has the effect of sucking that part shut, thereby reducing the volume of the lung and allowing that rest of the lung to operate better. The down side of valves is that they are suitable only for a relatively smaller number of patients. This is because they work well only if the divisions between the different lobes of the lung are intact. (These divisions are called ‘fissures’, and are substantial features inside the lung that can be seen on X-ray or CT scan images.) See what I wrote about Colateral Ventilation as an answer to a question within this article,
healthunlocked.com/blf/ques…
Using coils is one way to avoid the problems associated with colateral ventilation, because their action is purely mechanical. They are made from a medical alloy called nitinol (an alloy of nickel and titanium that our bodies find acceptable, and do not reject). Nitinol has a very useful property in that it is a memory spring. It will always try to return to its set shape. A number (usually about 10) are placed into targeted areas in the lung using a bronchoscope (tube with camera down the throat). They go in straight, and return to their ‘memory’ shape over a period of several days. This makes that part of the lung ‘scrunch’ up.Collectively, they close down a section of lung and reduce the volume of the lung. Advantages are mainly that colateral ventilation is not an issue. Disadvantages. Some patients have had some discomfort as the coils take up their natural or memory shape. The areas closed off lose any ventilation, so that natural secretions as well as mucus cannot drain from that part easily. Coils require a minimum density of tissue to get hold of, so if you have large cavities or ‘bullae’, then they are not suitable. Internal tearing of the tissues within the lung is also a small, but possible risk. Therefore infection is an issue that needs consideration and urgent treatment if it occurs. If a problem does present itself, extraction of only a few coils may be possible. This procedure is not considered reversible.

A couple of short videos for you to see. The first shows how valves are fitted, and the second one explains coils.

http://www.youtube.com/watch?v=7C6CGqXLtuM

http://www.youtube.com/watch?v=Ku9VkEnrdFg

I hope this helps. If you need more info, ask.

breathe easy

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