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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Letter: Cut the Costly Climate Chatter

Watts Up With That?

Letter to the editor by Viv Forbes

Letter-to-Editor-pen-mouse

Twenty-two years ago a bunch of green activists calling themselves “The Earth Summit” met in Rio and invented a way to tour the world at tax-payers’ expense – never-ending conferences on environmental alarms.

Like any good bureaucratic committee, they soon established sub-committees on sustainability, pollution, development, energy, forestry, water, biodiversity, endangered species, poverty, health, population and Agenda 21 (this item alone had 40 chapters each with its own sub-committee). Environmental conferences became the greatest multi-national growth industry in the world financed mainly by tax-payers via participating public servants, climate academics, employees of nationalised industries and tax-sheltered green “charities” such as Greenpeace and WWF.

They really hit the Mother Lode with their creation called “Global Warming”, and its proxies “Climate Change” and “Extreme Weather”.

These “noble causes” generated a hierarchy of steering committees, reference committees, political committees, science sub-groups, working committees, reviewers and peak…

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My Daydream

This is What I Would like for COPD Patients

In an Ideal Situation this would happen. —– The Patient gets a first possible diagnosis of COPD. Within one week, a Lung Function Test (LFT) is performed, X-ray images are taken, blood gases are tested, a full blood test is done. Within one month, an interview with a Specialist Thoracic Consultant is arranged to confirm or deny COPD, using the images and test results. If confirmed, the patient would be given appointments for further tests, scans and follow-ups as deemed necessary, and enrolled onto a continuously running Pulmonary Rehabilitation Programme.
The Pulmonary Rehabilitation Programme should be a continuously run course of exercise sessions, two or three times a week, consisting of sitting, standing, and walking exercises, including bikes, stretch bands, weights, and treadmills. Once a week the course should have an educational talk added, to include many aspects of what affects COPD sufferers, rotating on perhaps a three month cycle. The course should be overseen by a combination of nurses, physiotherapists, and physical trainers, who have been trained to recognise the needs and limitations of COPD patients. Each patient should have a record so that improvement can be recognised, or problems identified at an early stage.
Before each session, the patients would have their blood pressure (BP) recorded, and also oxygen level and pulse rate (SATS). Also in comments, any recent changes in medication, or the occurrence of infection, etc. During the session, for each exercise performed would be recorded the name of the exercise, the number of repeats, the the patient’s SATS and degree of breathlessness at the end. Also to be recorded in comments would be any difficulties encountered. A one hour session with perhaps ten different exercises should be sufficient for each patient. Each session should start and end with a sequence of exercises designed for warm-up and cool-down, done as a group, and afterwards a time for a drink (coffee, tea, or a cold drink) and a light snack, and chat.
Once a week, after the exercise session should be an educational talk for about an hour, either interactive, or with a Q & A period after. Subjects could be (not an exhaustive list):
1. What is COPD, what causes it, and how does it progress?  ++ By a consultant or a doctor, or a Respiratory Nurse.
2. Explanation of a Lung Function Test.  ++  By a consultant or a doctor, or a Respiratory Nurse.
3. Drugs used for the control and relief of COPD.   ++  By a Pharmacist.
4. Nutrition and the importance of diet in COPD.   ++  By a Nutritionist.
5. Mobility and Mobility Aids.   ++  By an Occupational Therapist.
6. Benefits. What is available and how to claim.   ++  By a CAB advisor.
7. Advanced COPD. Treatments and possible procedures.  ++  By a Respiratory Consultant.
8. What happens when an ambulance is called to a person with breathing difficulties.  ++  By Ambulance Staff.
9. Exacerbations and panic attacks, and how to deal with them.  ++  By a Respiratory Nurse.
10. Carers and support for them.  ++  By a Local Authority Social Services Supervisor.
11. Oxygen. Benefits, equipment and use.  ++  By a Respiratory Nurse.
12. Pulse oximeters and blood pressure monitors.  ++  By a Respiratory Nurse.

Perhaps this could be on a basis of a period of one rotation of talks free on prescription. Continuation sessions can be attended for a small fee to help defray costs or help with equipment replacement etc.
Run as many courses in a week as is necessary to serve demand. Run evening courses for those able to stay in work.

What is central to this concept is that there are personnel whose job is specifically to run these courses, in a dedicated clinic. Another idea perhaps would be to include cardiac patients into the courses, and include talks and demonstration sessions relevant to them. The mobility restrictions of cardiac patients are similar to lung disease patients, as are their requirements to improve fitness, particularly before and after surgery. Many people suffer from both lung and heart problems, and so one course could help with both.
Education of the patient is essential for their motivation. If people know the reason for the exercises, the drugs, and what help is available, then they are better able to help themselves to be fitter, and healthier.

breathe easy, everyone

John

Richard Muller: ‘shale gas technology should be advanced as rapidly as possible’

Watts Up With That?

by Richard Muller, Professor of Physics, University of Califoria at Berkeley

Some oppose shale gas because it is a fossil fuel, a source of carbon dioxide. Some are concerned by accounts of the fresh water it needs, by flaming faucets, by leaked “fugitive methane”, by pollution of the ground with fracking fluid and by damaging earthquakes.

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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

Together for Health – A Respiratory Health Delivery Plan

On Tuesday of this week (29th April), having been invited to attend by Chris Mulholland of the BLF, I was present at the Senedd (home of the Welsh Assembly) for the launch of an initiative, Together for Health – A Respiratory Health Delivery Plan.
This is intended to be a three year plan to take us to 2017. This was an excellent event attended by many Assembly Members, who gave very freely of their time to talk to the other attendees. I met and spoke to the Welsh Minister for Health and Social Security, Mark Drakeford AM, for several minutes about differences in my life before my lung operation and after. I also met and spoke to other AM’s, surgeons, consultants, doctors and respiratory nurses who all have an interest in respiratory disease. Also present were other patients, members of Breathe Easy Groups and representatives from the support industries that keep us going. As well, there were the media with reporters from Welsh papers and news agencies as well as the BBC News, who did a short live broadcast for the One O’clock News, with a more detailed piece later for the evening news. For me, I saw this as a very successful day.
Since then, I have received a copy of the document published by the Welsh Assembly detailing the plan. As it is now published, I can spread it about. Therefore for those interested, it can be accessed at:

http://wales.gov.uk/docs/dhss/publications/140429respiratoryen.pdf

Breath easy, everyone