Lung Reduction Surgery, Valves, Coils and Further New Developments

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Throughout writing my blog I have come across many new procedures for helping people breathe easier with COPD and have written about and included as many as possible in various posts. I thought that it would be easier to centralise these posts so you will find links to them at the bottom of this page.

New methods are being found all the time and this gives hope for the future when a cure may be found. As a leading clinician explains below to the response of will there ever be a cure for COPD new treatments are being found all the time – 

COPD is a more persistent and progressive form of airflow obstruction and includes Asthmatic Bronchitis, Chronic Bronchitis, and Emphysema. Stopping smoking is the answer to prevention and progression of COPD. By stopping all smoking, the great majority of patients could avoid COPD altogether or could stop it in its tracks! Those patients with the rare form of congenital alpha 1 antitrypsin deficiency can now have a replacement therapy. The alpha antiproteinase is called prolastin. It requires weekly or possibly only monthly infusions. In effect, it is a cure because it replaces the basic deficiency. But, it is not for all forms of COPD. (Two other forms of treatment for alpha 1 deficiency have just been introduced).

(Dr. Thomas Petty, Professor of Medicine, University of Colorado Health Sciences Center; Consultant and Faculty at HealthONE Center Denver, CO.)

80073cf0ca644f5f29a9fd5b49dfe506So as you can see above, stopping smoking is already one cure and I just cannot understand why people with COPD carry on smoking it just puzzles me. One reason could be that Doctors wrongly just keep saying its going to get worse as time goes on. Patients then feel, ‘so what’s the point in stopping!’ I really feel doctors should change their attitude and then maybe people could stop successfully. A while ago I spoke to someone who had valves inserted for three years and was still smoking. Did his doctor know this, probably not, it is very difficult for doctors to do any real and accurate research on the progression of COPD when patients tend not to tell their doctors if they fall off the wagon. I count myself as very lucky I have read a great deal about smoking and COPD and my worst nightmare would be starting smoking again, I know it would never happen. Well on with the procedures that could be done to help a COPD sufferer breathe a bit better. These are two very interesting videos on Lung Reduction Surgery. The coils are on trial at the moment in the UK (see my front page for contact details for Dr Kemp) The non coil or valve method is explained in the second video and seems just as successful. Watch and let me know your thoughts.

It is my opinion that in the following video two US patients are talking about lung volume reduction surgery using the classic method but through keyhole surgery. A method that wherever possible will one day be replaced by coils and valves. However, there will always be patients like myself unfortunately who are not suitable for coils and valves and so will have to rely on the invasive keyhole surgery. I am seeking a second opinion on this and hope coils or valves will be my option. Will keep you all posted on this. You know me never give up!

The next video shows an actual operation using coils, the procedure is carried out in Sweden with insights from Swedish Doctors. Its really quite fascinating.

My experience of trying to improve my breathing with new methods – Endobronchial Valves – Links and Things

The 10-Step Programe – does it work?

THERAPIES THAT CAN HELP

THREE COPD PATIENT’S NEW LEASE OF LIFE – ENDOBRONCHIAL VALVES

‘Godsend’ operation for Scottish lung patient – BBC News

Expanding Treatment Options: The Latest Developments in COPD Therapy | MD Magazine

ANOTHER COPD PATIENT’S SUCCESS WITH VALVES

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Grapefruit, Banana and Cheese Could Help COPD

Could grapefruit beat lung disease? Eating fruit and other foods including cheese and bananas-and-grapefruit-226x300bananas found to help patients suffering from COPD, because of there anti-inflammatory properties.

A few years ago I had a passion for Pink Grapefruits and Fresh Lemons and used this passion to shed 2 stone. I had asthma at that time and noticed a definite improvement in my breathing whilst I was on my diet. I therefore, am going to go back onto the grapefruits as I still love them. I suppose it makes sense that they will help with the inflammation of asthma and therefore help my COPD. Will keep you all posted.

  • Some 3 million people in the UK suffer from Chronic Obstructive Pulmonary Disease (COPD)
  • Researchers studied the eating habits of more than 2,100 COPD sufferers
  • Scientists found a direct link between eating grapefruit and improvements in the patient’s condition

Eating grapefruit, bananas, fish and cheese could help patients suffering one of the most common lung conditions in Britain, say scientists.

Research showed a direct link between the foods and improvements in people with chronic obstructive pulmonary disease (COPD). Scientists from the US and Europe used diet records for 2,167 COPD sufferers over a three-year period. Those who had eaten the products within 24 hours showed improvement in a range of measures such as lung function, fitness scores and white blood cell count. Lead study author Dr Corrine Hanson said patients should now be offered dietary and nutritional counselling as part of their treatment.

I wonder if a Grapefruit Cake will count lol looks yummy!

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Endobronchial Valves – Links and Things

I feel like I’m like a bird that has had its wings clipped, being held up at every turn! It can be very frustrating.

I have only been writing this blog now for 7 months but in that time I have learnt loads and passed this information on to my readers as often as possible. One thing that I haveimg_6765 been asked about more than anything by people from the US and UK are about the endobronchial valves. I have done a number of posts on them so I felt they deserved a chapter of their own so I will be putting all the links on this post together for them. My road to having these valves fitted has not been an easy one and in the post My 2nd Appointment to Jimmy’s  you will see why. You have to jump through a lot of hoops to finally get there and also my opinion on where and who they would be fitted by has also been under a lot of change. Hey, this is an important operation, if I am to be put under general anesthetic and have my lungs tampered with, I want the best tamperer!

THOSE HOOPS AND HURDLES!

One of the first hoops you have to get through is all the tests and because I have the worst luck in the world at always having appointments when I am suffering from a bad images (4)day, this has been a real pain to say the least. The first test I had was the full lung function test and it took quite a long time and because I was in the middle of an exacerbation this was not very pleasant but I was determined to finish it, it’s one step nearer!  I was so exhausted after the test for the first time ever, I had to get a porter to push me back to the car. Then you must have a CT Scan that is easy even if you are under par. However, since I have started exercising I am no longer having these problems, it has been hard trying to fit exercise in between flare ups during winter but it’s just a matter of how determined you are to feel a bit less breathless in the long-term.

After all these results were through, I had to wait to see my specialist at Huddersfield more time wasted! When I had chatted to her about the procedure and she asked me if I was sure that I wanted it done as I could live for years like this and I wasn’t going to die. I said, ‘exactly, this is why I want it done I don’t want to live like this for years!’. She then referred  me to Leeds, Jimmy’s in fact and my first appointment there was very good. I saw a young thoracic surgeon who was very hopeful of a good outcome and booked me in for a nuclear scan. Details of this can be read up in another section called My Appointment at Jimmy’s for Nuclear Scan . It seems that if there are any tears in between the lobes of your lungs, then it’s difficult to do the operation. A nuclear scan shows them this apparently. Its called  ‘collateral ventilation’ and there is a post about this in the link Collateral Ventilation Explained Simply!!

While this was all going on, I was waiting for my referral for the other hurdle that had to be endured before I could have the operation done and that was the Pulmonary Rehab Course. Actually, I was quite looking forward to completing this course. I had tried twice in the past and only got through the first month or so because I caught and infection and did not want to give it to everyone else so I carried on doing a bit at home. I did a full course at our local hospice but it wasn’t much in the way of exercises. It was more chat, tea and coffee and cake and education about the disease which ended with a living will lesson, which didn’t go down with me very well at all, I felt like walking out! I am definitely not ready for that yet. Anyway, I did try to start the Pulmonary Rehab Course but when I went for my assessment true to me I was having another flare up and she wouldn’t continue with the 6 min walk because my stats had dropped dramatically from walking about 6 foot to the corridor. She asked me to ring her when I had recovered.

THERE IS ALWAYS LIGHT AT THE END OF THE TUNNEL!

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I can promise you that it is not an easy road trying to improve your breathing and your situation when you have COPD. From what I have been able to discover the first person in the UK to have the valves fitted was in 2012, so it’s still early days. There are other methods also such as coils, surgery etc.  It is costing the NHS millions in support treatments at the moment and palliative care and the numbers of lung patients are rising, add-on to that the number of people with heart disease as it’s a crossover, if you get my meaning; it is costing a mint. Therefore, I feel a lot more research will be done during the next 10 years, they might even find a cure. you never know. Anyway after a terrible time at my last appointment at Jimmy’s, I actually had some good news and you can read about it in the following post NEVER LOSE FAITH – It must be Karma! and Amen to that!

Below are all the links about the valves –

NOT AGAIN – When Your Having A Bad Day – a bad air day?

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I decided to write this post after I started experiencing a worsening of my symptoms for no apparent reason on Friday night; driving my car to the chip shop. I knew instinctively that a bad day was on the way! Anyone who has stage three or four COPD will be familiar with these days. You feel like there is just not enough air to go round and everything takes so much more effort and it’s exhausting.

Like many people, when I was first diagnosed with COPD it was already quite severe and these days were very frequent and puzzling to me. Back then I used to get many more bad days than good days. Since I have adjusted my life a bit I do not have so many but when I do it always annoys and frustrates me. I run through all the reasons in my head why this day has come on me, such as, am Idownload (1) starting with a virus, have I eaten, drank something too sugary, is the air pressure low, that can cause poor oxygen in the atmosphere or have I been in contact with any allergens, maybe I have done too much. The answer isn’t always obvious sometimes there is no reason and any plans I have made for a shopping trip, visiting friends etc has to be put on hold. More frustrating, is my immediate family don’t seem to understand this anomaly at all. I’m sure they think I am malingering at times – you know, as if I really enjoy those days not being able to breath? They make comments like you are always breathless what’s the difference or your always ill as if it’s just another day! Then I try to explain yes, but its the degree of breathlessness! It is almost impossible to explain it.

So what do I do about it? Well, I find a lot of patience comes in handy especially if this daydownload (2) or days, I forgot to mention it can last for a couple of days, falls on a cleaning day or a shopping day or a day I had plans or especially if someone else is relying on me, (that can be tricky). Firstly, I hunt out my emergency antibiotics and steroids and try to decide if they will be needed. I take my peak flow and measure my oxygen levels, am I wheezing more? This usually tells me if steroids are needed and if I start coughing up gunk then there may be an infection on the way so I add on the antibiotics. If it is an infection, then it will turn into as full blown exacerbation and won’t be gone in a day or two. But if as often is the case it’s nothing like that then I will get my nebuliser out and  make myself comfortable on the settee and put 110_E2BFposter_zcatch up TV on and have a nice cup of tea (thats if I am well enough to make one). This is where exercising has really come to benefit me. These mini flare ups are not as bad when they come and I am able to get my food and drinks. Whereas in the past pre exercise me, well, I went for hours without even having a cup of tea and these mini flare ups could go on for longer and the chance of them developing into an infection were higher. Keeping fit and eating nutritious food is really important to keep in control of your symptoms. Below is a video where a respiratory nurse explains about keeping a journal helps.

Collateral Ventilation Explained Simply!!

Below is an explanation of Collateral Ventilation, this came up on one of my visits to Jimmy’s. The surgeon mentioned that I would not be able to have endobronchial valves if the lobes of my lungs affected had ‘collateral ventilation’. I went home and straight away tried to find an easy explanation for it. I am now sharing my knowledge with you –

Collateral Ventilation Explained

In the lungs of a normal, healthy person, there is one single route inwards and out again for each of the alveoli (alveoli are the tiny cavities at the end of the airways where the gas exchange with the blood happens). Think in terms of a bunch of grapes. Alveoli are the grapes, the airways are the stalks.

When the lungs get damaged, whether through disease or pollution or irritation, if the membrane suffers extensive damage, then some of that membrane is replaced, as part of the healing process, with scar tissue. If there are repeated episodes of disease, or sustained exposure to pollution or other causes of irritation, then the amount of scarring can become significant.

Scar tissue is not as elastic as the original membrane. It also does not permit gasimages (1) exchange. As our lungs expand and contract, if the sites where scarring has occurred have become a significant size, then some tearing can happen. This tearing is minute, and is no cause for concern in terms of day to day wear and tear. It is the long term combined effect over years that is the problem. This is where we now jump to, several year down the line. Imagine that two adjacent alveoli have a lot of scarring, and another inflaming infection takes hold, and one particular breath is deeper and heavier than normal, and it causes a tear that goes through the tissue between the alveoli. You now have a hole that will not close. The tissue will heal, but leaves an enlarged cavity because that requires less stretching than the original formation. For the bunch of grapes, two grapes have been replaced by one damson fed by two stalks. After several more years, a number of damsons have formed, and some of those have merged into much larger plums. This is now advanced Emphysema, with some large cavities (called bullae), and we are at the point where medical intervention is required. This is what has happened to me on my upper left lobe I have just got one large bullae. It is filled with too much air, imagine it as been blown up like a balloon but there is no way out for the air because the valve letting air in and pushing air out is no longer working. Air gets trapped taking up vital lung space so any good parts of your lung are compromised by this shortage of space taken up by this massive balloon.  One of the things that has to be considered to determine which operation is best to go for is how this damage presents itself.

The structure of the lungs is that they are divided into zones called lobes, three in theDiagram of lungs right, and two in the left. Thinking in terms of the bunches of grapes, consider that each lobe is home to one complete bunch whose only contact normally is through the main stem (the main airway). If the damage within the lungs is confined within the individual bunches, in other words, does not cross the boundaries between the lobes, then there is no collateral ventilation. Collateral ventilation occurs when the the tissue damage permits the passage of air between the lobes through holes between the lobes.

As the damage progresses, as the cavities form, so the internal support structure of the lungs gets reduced. This allows the lungs to become longer and they over inflate because of the loss of elasticity. They sit on the diaphragm, the bottom lobe of each lung gets compressed and generally cannot continue to work properly. The diaphragm now has to lift this extra weight with each breath taken. Through a day, that adds up to a lot of extra hard work. Taken with the loss of alveoli, and the presence of frequent infections etc, the lungs are now operating at maybe as low as 15% of their full capability when in good condition. The patient is permanently fatigued and needs lots of medication to keep the airways open. Often oxygen is needed. At this point, the consultant decides that surgical intervention is required. The first choice at the moment for most consultants is to use pulmonary valves. They are easy to fit, they allow the blocked off part of the lung to continue to pass CO2 and the lungs natural secretions out. Most importantly, they are reversible (if need be, they can be removed easily). The biggest deciding factor in choice for or against valves is whether or not there is collateral ventilation. If there is none, or is very minor, then valves could be considered. If there is collateral ventilation, then the usual decision is to go for lung reduction surgery. I had to have a lung ventilation scan  (see link for details of this), it was found from the scan that the divisions in my lobes are not ok and have scar tissue so I am not suitable for the valves in that area, it will collapse too much of my lungs.  This is all the damaged caused from Chronic Bronchitis which I have had through smoking. Dr Kemp in London explained that I have emphysema all over my lungs but it is pretty bad at the top of the right lung  so that is where they will start by cutting it off. He said he might consider valves for the other side.

As you can see, at the stage where there needs to be a choice made, the presence or not of collateral ventilation is important. Links to some videos that may help follow:

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NEVER LOSE FAITH – It must be Karma!

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My appointment for my heart scan was this morning and my breathing was noticeably better for the exercising and for following the advice in the book I have been reviewing so  The 10-Step Program  is definitely working YEH!! I used the breathing techniques that I learnt from the book and emptied my lungs as much as possible to fill with fresh oxygen air and emptied them for the scan. They saw everything this time and said it was quite 835e9a0fd02769f448d4e0120a38af3ceasy to do. I am crossing my fingers and toes that the scan I had on my heart is OK and green to go for any procedures. A blinking general anesthetic is impossible if your heart is on the blip. So I am praying for a good result. Although the scan was OK a young man was doing it and I found it a bit embarrassing, as you have to be naked from the waist up, its OK for a bloke to have it done but I hope I don’t have to have another one.

AND FOR THE BEST NEWS I HAVE HAD THIS WEEK!

556f8dfdea43be7dcddc63bcc6fe8455I have had some great news this week, a TRANSFORM study is taking place at the Royal Brompton Hospital and the Doctor responsible for it has asked me to get referred to them, they are doing a lot of different things at the moment, so if valves are not the way forward for me, perhaps something else will be. I am so full of hope now that someone will help. And for those of you who question my motives for writing my blog, well, if it wasn’t for this blog I wouldn’t have know Dr Sam! And other people who have this horrible illness would not see that there is some hope because at times it can become a bit overwhelming, not being able to breath is very scary.

What we need next is a few celebrities who might do a recording for COPD and all the funds could be put to research and for making some very ill people’s life a little bit better. But that’s for next year! Firstly, I had to contact my specialist Dr Graham who is lovely and hopefully she will refer me to Dr Sam. This refering to another consultant is not easy and I am not aware of the process very well. All I know is that this is my life and its a life threatening disease and I have to use my instincts and I know this is the right way to go. I had to change my respiratory doctor to Dr Graham 3 years ago and it was the best move I have ever made. It was a bit embarrassing when I saw the other doctor on the ward but like I say if you have a life threatening illness you have to do some uncomfortable things. At the moment the respiratory department in Huddersfield is short staffed and overworked so I am also asking my GP to refer me too, I have an appointment for them tomorrow. There is a piece that I have read about changing your consultant or doctor the link is here, Changing your Doctor?

Hear is a photo of Dr Sam with a patient who he has treated

Jay Nash of Pulmonx with Annette Eiben and Dr Samuel Kemp

A hospital employee has become the latest emphysema sufferer to undergo a new procedure that is offering a lifeline to people with serious respiratory conditions. Former King’s Mill Hospital worker, Annette Eiben from Mansfield, is the latest person to receive endobronchial lung volume reduction (ELVR) treatment using the Pulmonx Zephyr Endobronchial Valve.

Pulmonx Starts UK Clinical Trial at Royal Brompton Hospital and Other UK Hospitals

Endobronchial Valve Trials – Official Valve Trials Site with details of two trials which are taking place the LIBERATE AND TRANSFORM studies.

Click to see  Video report from Glasgow surgeon Mr Alan Kirk and accompanying press release about the success of these valves in Glasgow Hospital – Press Release Jan 2016

Minimally Invasive Lung Valve Treatment Offering Hope to Emphysema Patients see Endobronchial Valve new lease of life for emphysema patients for full details of Dr Kemp and his patients’ success. Trials will be taking place at seven different UK Hospitals. See the above link for all the info and contact details. Or you can contact-

Dr Sam Kemp through his email drsamuelkemp@hotmail.co.uk

The procedure was carried out by Dr Samuel Kemp, a consultant physician at the Mansfield hospital, and Eiben has described the difference to her quality of life as ‘nothing short of amazing’.

The 58 year old has been living with emphysema for several years and prior to having her procedure the simplest of tasks such as drying herself after a bath or reaching for a plug would leave her breathless, not to mention the daily struggle of walking up and down stairs.

And I think all of us with stage 4 COPD will relate to this! Will carry on with the exercising and losing weight and waiting for my appointments to come through. But at least I now have some hope of a better future. This touching ode to Mohammed Ali serves as a reminder that even in the darkest hour, there is still hope. Listen to this song when the going gets tough.

And I’m that little bit of hope / When my back’s against the rope