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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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 –

IS COPD TERMINAL – AM I GOING TO DIE?

images (3)During one of my hospitalisations with my Asthma the news was broken to me that I could have developed COPD (this was confirmed at a much later date), I will NEVER forget the feeling, when they handed me a leaflet on Emphysema and COPD and just left me to deal with the news alone. I spent all night in the bathroom looking out of the window and crying. I just couldn’t handle it at that time. I said ‘will I die from this?’ and the nurse said, ‘we all have to die of something’, that definitely wasn’t what I wanted to hear at that time.

My Grandad had died of emphysema, I hadn’t been very close to him unfortunately so did not know what he went through with it or how he managed it but I knew it was terrible, whatever it was and I was basically frightened of the unknown.
The truth is, how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. 
 
The following piece has been written by Derek Cummings who has lived with the disease for 28 years and I really wish I could have read this when I was told I MIGHT have it.  The way you react when first told you have this illness needs to be positive, you need to know that you are not going to die and how you can make your life better, also what you can do to improve your life and slow the disease down – I so wish I had known this. I was like many people at first, I just felt that this was it the end of my life, what was the point of doing anything, I was depressed basically and scared! Below is this piece and some links have been kept in for your further reading.

knowledge_is_power_by_haleyspeers-d4nqjj7As someone who has written a journal on my journey with COPD for several years I often receive emails from frightened readers. Or notice a search engine query asking if COPD is a death sentence or how long do I have to live with COPD? “Will I live long enough to see my children grow up? Does this mean I will not see my daughter grow up, get married, start her own family? Or ever know my future grandchildren?” are often the first questions I read in emails I receive.

Many times this is followed by a Google session as the frightened patient types “how long do I have to live with COPD?”. To then receive some good, but sometimes frightening advice. One page I know informs the reader you will live five years at most from diagnosis. How wrong is that? I have suffered COPD for 28 years now. I have friends on my COPD network that have lived with this illness for longer than I. If that advice had been right, I would have been dust by 1992.

None of us will beat the reaper. We are all sadly going to die at some time in the future. But more than likely with COPD and not because of it, despite COPD being one of the major causes of death in both the USA and UK. I am not going to lie, COPD will finish some of us. But most will have managed their condition for very many years, with lots of fun-packed times put in before the inevitable happens.

The truth is how long you live once you have been diagnosed is up to you. Your life and how long you survive once diagnosed is literally in your own hands. How long you survive will depend on your actions because although COPD is progressive that progress, providing you do not smoke, is very slow. Just simple lifestyle changes can and will add years to your life. As your illness progresses through the stages there is no denying there will be many challenges, and if you reach stage 4, there might come a time when you need to use oxygen therapy. But the truth is you are much more likely to die of something other than COPD.

Terminal to me is having cancer and being told you have weeks or months to live. That is the time to do all the things you have been scared to do. A parachute or bungee jump for instance. Can you imagine me jumping out a plane with an 8 pounds oxygen cylinder on my back? I guess my jump will speed up a bit but have to admit to laughing when I think about it. Our job with COPD is to make sure the reaper waits as long as possible. To do that, all you need to do is manage your condition. Take your medications when you need them. Oxygen if prescribed. Do not smoke. Else you might not last five years. Quitting smoking slows the pace of COPD dramatically. Exercise as much as you are able. This will exercise the lungs and help to keep muscles toned. Muscle uses least oxygen. Try not to get stressed as stress causes lots of breathing problems. Try to stay positive and to keep positive people around you. Have ‘It’s good to laugh’, as your motto and laugh often. Ask your consultant for a COPD management plan and stick to it. Make sure you get a flu shot each year and pneumonia shot. If you become unusually breathless seek medical attention as soon as you can. If you do that, like me, you can live for very many years. In two years I have an anniversary. It will then be 30 years I will have lived with COPD – yet despite stage four I am still enjoying life.

Two years ago I learned of the death of a 66-year-old man from COPD. It was with sadness I read the reason. Despite having been prescribed oxygen, a false pride meant he would not use it. To him it was seen as a weakness to be seen using oxygen. Sadly his heart gave out under the strain of trying to give his body theoxygen he needed, and he died.

If you are prescribed oxygen it is to protect your vital organs including your heart. Oxygen when needed helps us to feel well and to breathe easier. I use oxygen for mobility and have no such false pride. Sometimes people look but everyone is polite and helpful. During the three years I have used oxygen not one has been rude. It is equally sad that many that do have mobile oxygen do not venture out their homes, in fear of what others might say. My thoughts have always been if someone has a problem with my cannula that is their problem. Not mine.

I hope this short piece has helped allay some of your fears of COPD, leaving you more able to start to feel less stressed and more able to move forward. Till I write again, keep that smile. But most of all, Breathe Easy.

I was diagnosed with mild COPD in 1987 when 39 years of age. Now at the very severe stage, I use oxygen for mobility and am disabled by my illness. Despite this I still have an extremely active life, and after more than 27 years of living with bad lungs, am living proof that we with COPD can enjoy a long life. I am often seen at events, meetings, restaurants, and publicity events though I wear a ‘nose hose’ for oxygen when mobile and a mobility scooter to get around.

See Also  How long will I live Another Wonderful Piece

ANOTHER COPD PATIENT’S SUCCESS WITH VALVES

2A18BFB700000578-3143645-image-m-20_1435631471663New research shows a special valve in the lungs can help emphysema patients breathe more easily. Ted Poole, 68, a retired business consultant from North London, had the procedure.

‘I’d smoked up to 40 cigarettes a day since I was 14,’ said Ted Poole. Over Christmas 2002, my wife Lynn and I both had a bad bout of flu.

But I was still coughing and spluttering two months later, so I saw a GP. He tested my breathing and said I had chronic obstructive pulmonary disease (COPD) — incurable damage to my lungs due to years of smoking.

I’d smoked up to 40 cigarettes a day since I was 14, and Lynn smoked, too. She was diagnosed with COPD a few weeks later. We both gave up smoking immediately, which helped and the GP also prescribed inhalers.

But the COPD slowed us down. Neither of us could climb stairs or walk far without pausing for breath, and we had to give up our hobby; riding our tandem bike in the New Forest. After a chest infection in 2011, Lynn couldn’t breathe properly and ended up in hospital. She was referred to the Royal Brompton Hospital in London, where she underwent a new procedure to have metal coils inserted into her lungs to help them work better. Apparently the coils would compress the damaged areas so that the healthy parts could work more effectively.

I asked my GP to refer me, too. The doctors at the Royal Brompton said I had emphysema; basically, tiny air sacs in my lungs had become damaged by smoking and I wasn’t exhaling properly, so air was getting trapped. This trapped air was preventing me from breathing more air in. I was told my right lung was worse than my left.

But my lungs were too damaged for me to be suitable for the coils operation. I’d got to the point where I struggled for breath even while talking……read more

‘Godsend’ operation for Scottish lung patient – BBC News

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Patricia McCall said she feels “100 times better” after the procedure

One of the first patients in Scotland to receive a new lung valve has spoken of the huge improvement in her quality of life. Patricia McCall had tiny valves inserted in her lungs to treat her emphysema. The procedure is an alternative to radical surgery in which diseased parts of the lungs are cut away.

Ms McCall was treated at the Golden Jubilee National Hospital in Clydebank as part of a clinical trial. The hospital is the first in Scotland to fit the valves. The valves are made from titanium and silicone and could be suitable for up to a third of emphysema patients.

READ MORE  ‘Godsend’ operation for Scottish lung patient – BBC News

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