WHEN ONE DOOR CLOSES – Could a better one open?

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dalai-lama-stroke-luck-wonderful-4f7hMY DAD was always one who had a saying for everything, be it good or bad, but mostly when negative things were whizzing around in your life. A couple of his favourites were  ‘nothing worth having comes easy’ and when you were expecting something good to be coming your way, ‘don’t count your chickens before they hatch’! My Dad was the eternal philosopher, verging on the pessimist, who had been brought up in the war and had been subjected to a very hard life. His father had been a coal man and was so soft with his customers, collecting payments, that he ended up going out of business. My Dad was one of four boys and his father ruled the house with a rather large and well used rod of iron. His father had suffered some injury to his hip and walked with a limp, which was quite painful at times and this caused him to have a very bad temper. My Dad was therefore quite strict with me and he often said to me, when I felt the task in front of me was too huge and almost impossible to achieve, ‘there is no such word as can’t’. Other favorites he would bestow on me when I was walking around the house with a long face, after those chickens hadn’t hatched after all were, ‘when one door closes, another one opens’ or ‘everything happens for a reason’ and ‘every cloud has a silver lining’. I must admit that as a teenager these sayings did not really help me a lot. And, looking back to when my children were teenagers, I don’t think they would have helped them much either. I would have sucessfully wound them up as they say nowadays.

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My Dad is dead now and he died before I got the diagnosis of COPD/Emphysema/Chronic Asthma and I was sat wondering today what saying my dad would have fixed to this illogical illness and my life now. He was a great fan of Star Trek and would have associated my fate with that of Leonard Nimoy I am sure of that. I am sure also he would have thought of something, two favourites come to mind, ‘you’re never given more than you can manage’ and ‘there’s always someone worse off than you’. I certainly do not feel like that when I am in the midst of one of those horrible exacerbations that a lot of you are familiar with, maybe some of you have heard about and some of you perhaps have seen a family member or close friend struggle with. It’s not a very pleasant experience feeling like you are suffocating to death and there is very little that can be done, except taking antibiotics and/or steroids, its just a waiting game really, waiting for the symptoms to subside. It’s annoying really because they come on so suddenly and yet seem to take forever to go, another saying comes to mind, ‘patience is a virtue that very few possess’ and ‘you have to take the rough with the smooth’. Oh yes, he had a saying for everything, my Dad!

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Today I have been in an excitable and then reflective mood because I have received my appointment for my consultation at the Royal Brompton Hospital with Dr Samuel Kemp. They are at the top of the tree in alternative ways to help people with COPD and the most experienced in the UK in using the endobronchial valves. It’s a long way to go at 190 miles away but if they can help it will definitely be worth it. How life can change it was only a few weeks ago I was sat crying feeling hopeless because the consultant at Jimmy’s wasn’t on the same page as me. He wanted me to get worse before he helped, they were probably running out of funds!  Another great saying my Dad would have definitely used tonight and that would be ‘when one door closes another one opens’ , yes Dad, I can still hear you!

I have learnt a lot of things during my journey up to today and that is your health is yourRely-Quotes-Achieve-success-on-your-own-If-you-want-success-then-dont-rely-on-other-people-to-do-what-you-can-do responsibility it is up to you to question and find alternative paths to go down.Well what is that saying ‘if you want something doing do it yourself’ and I definitely wouldn’t be where I am today if it hadn’t been for the wise teachings of my Dad giving me the ability to stand on my own two feet and question everything. I am now trying to be optimistic that these doctors will be able to help remove the trapped air from my lungs so that I can breath better than I am doing at the moment, I will then have a better quality of life, I hope!

21591cb3bf11c15a1b8bd340fb8ea44fHowever. my 27 year old daughter has been throwing about the sayings these past weeks. Because, she said, I don’t want you to get disappointed if you can’t have the valves done. HELP! she’s turning into her Grandad!! But, I suppose that’s not a bad thing, he was a wonderful Father even though he was the worst pessimist going.

Lets give a thought to the people in our life that have done so much for us, our parents, family and friends –

For more on this story see Falling off the precipice – and my appointment at the Royal Brompton

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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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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