ABOUT A SEMINAR AT LEEDS – MINIMUM ... - Lung Conditions C...

Lung Conditions Community Forum

55,055 members65,843 posts

ABOUT A SEMINAR AT LEEDS – MINIMUM INVASIVE TECHNIQUES FOR EMPHYSEMA

johnwr profile image
15 Replies

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.

Links to my othert articles mentioned above

blf.healthunlocked.com/blog...

blf.healthunlocked.com/blog...

Breathe easy

Johnwr

Written by
johnwr profile image
johnwr
To view profiles and participate in discussions please or .
Read more about...
15 Replies

johnwr - I have been studying your blog and read it several times so that I can absorb the information. Very clearly written and much to read: it was interesting. Thank you for keeping us in touch, Annie80

Me again - another reaction was the change in treatments between the 1950s and the 21st Century. We have come a long way.

johnwr profile image
johnwr in reply to

Hi annie80,

So right, after the seminar, I got talking to one of the older surgeons. He was involved in the first transplant teams at Harefield. He's still involved now and told me how they have gone from heart to heart and lung transplants, and then to lungs without the heart, and now cases where just one lung is done, and even partial lungs. Progress is happening, and it's getting faster. They just need to hurry up and sort us out.

breathe easy , annie,

johnwr

Thanks John. The sooner the better. You must know Papworth moving to a new site at Addenbrookes, Cambridge, nearby.

johnwr profile image
johnwr in reply to

Hi annie80,

I didn't know about Papworth. Thanks for the info. I'm sure it will be useful one day.

Lynne1955 profile image
Lynne1955

Really interesting John. Thank you for sharing it.

Lynne xx

KingoftheCocktails profile image
KingoftheCocktails

Very interesting John.That is why volunteers are needed for research to keep the advancements going

johnwr profile image
johnwr

I've just realised what I achieved on a personal level at this seminar. I STOOD FOR AN HOUR, AND SPOKE FOR MOST OF THAT TIME, LOUD ENOUGH FOR A ROOM FULL OF ABOUT 60 PEOPLE TO HEAR ME. (Yes, I was shouting it out. I'm proud of myself for that.)

Amazing John. I just wish I could have been there to listen to you. Absolutely well done. All the best....Annie80

ingy profile image
ingy

So you should be proud of yourself John. Thankyou for the blog, it is very interesting indeed. I asked my respiratory nurse only last week about valves, and she hadnt even heard of the procedure.

best wishes

ingrid.

martin1945 profile image
martin1945

Hi John I guess everyone has said of you what need to be said and the appreciation we must all feel for your efforts in keeping us informed. Absoultely well done!

caroleoctober profile image
caroleoctober

Thankyou for the interesting information John, I am still waiting for an appointment with my consultant to discuss this!

Carole

davy1192 profile image
davy1192

A brilliant blog. its a great help to everyone.

hi all .im new on hear.moderate copd female. 63 yr old.so have been reading bout valves and sealant being pumped into lungs.so why i we not giting this treatment r being told bout thez treatments then.i am seeing gp nx week and i will ask him to read up on them.as we all want the treatments.now.not nx year.now .all see what he says.

johnwr profile image
johnwr

Hi caroll,

Welcome to the forum.

I know we have been on about these new treatments that have become available. One thing that perhaps has not been emphasised enough is that they are not cures. The nearest thing to a cure we have at the moment is a Lung Transplant, which with the problems of availability, and the complications of such a huge operation mean it only gets to be done on a tiny proportion of those who need it. These other treatments only change which bits of the lung actually get to work, as well as reducing the volume of the lungs.

These treatments, valves or sealants, or the other processes, are relatively new, only developed in the last few years. It takes time for new surgeons to learn about them, and train to do them. Most are still being evaluated yet. In the case of sealants, they are still very much on early trials. Valves they know a bit more about, but even where surgeons have had the training, they still wait for equipment to be provided. Even when surgeons have the equipment, they have to be sure that doing the procedure isn't going to make the patient worse, or even threaten their life. You would not thank your consultant for doubling your liability to pneumonia due to reduced ventilation to part of your lung. That's why these professionals are so careful about selection.

Caroll, you say that you have a moderate level of COPD, that means that compared to many on here, you are quite well off, you still have capacity to move around fairly easily. You have an oportunity that many don't have. They got diagnosed too late. Use that capacity you have to get as fit as you can, within reason. Because that way you can slow the progress of whichever disease you have. Take every opportunity to build up your immune system you can (vitamin D3 is good). Guard against infection. Even healthy eating helps.

Oops! Sorry about the rant, it wasn't really aimed at you, just intended to show thatin the earlier stages, if you know you have a problem, there is time to do something about it yourself.

In the meantime, breathe easy, and remember that any questions will get answers.

I'm not a medical professional, just a patient, happy to be on the receiving end of one of these procedures.

johnwr

You may also like...

lung volume reduction operation

the valves fitted into my lungs as severity of my emphysema however another heart/chest surgeon says

Lobectomy for bronchiectasis

anyone has had a lobectomy for bronchiectasis and were cured or at least felt a lot better? I had...

IS HE GOING TO SLIDE OUT OF THIS ONE?!

breathlessness due my lung condition and 'elderly patients under sedation tend to move about a...

Bronchiectasis oxygen therapy

any harm in using oxygen 24/7 at 3 litre from a concentrator. I am told it will make lungs to work...

Visit to my General Practitioner.

results and letter from the respiratory specialist I saw for my newly diagnosed bronchiectasis. He...