COPD – WHEN THINGS GET OUT OF CONTROL

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Well, things really went pear-shaped for me these past few months. It has been like four months from hell! After a horrible sore throat at the beginning of July it went on to progress to a horrible chest infection towards the end of July and I ended up in the hospital for ten days. But this was not the end of my nightmare it was just the beginning. Huddersfield Royal Infirmary has merged with Halifax. Because of this reorganization, they have now lost their best and most experienced consultant. because I heard from the staff that the changes that were coming into the department she did not agree with and she was right. There is no longer any continuity of care you see a different chest doctor every day as they work on rota sharing the workload. This gets a bit annoying because you are having to explain everything from scratch every day to different specialists. In the end, I wrote a bulleted list on a piece of paper answers to all the questions that they usually ask one of their favorite being what had brought me into the hospital this time?

changes-comingMy Treatment Regime Was Changed!

Usually, when I have a flare up I go into hospital and my consultant prescribes IV antibiotics1834751917ce3b0e284a4d564f37683e--color-blue-splash-of-color and an aminophylline drip for the asthma part of my illness and perhaps a magnesium drip. Because I have brittle asthma my consultant used to treat the asthma first. I have also got aspergillus bronchitis so that does not help the situation. It has always been a long drawn out process which involved about 2 weeks in the hospital to open the airways back up. But this did not happen I had antibiotics in the form of tablets and carried on with the prednisolone which I had already been on for over a week and the drip for two days and then when it started to flare up again because they had taken it off too quickly I was put back on it again for another two days it was a right pantomime. They said I did not have an infection because the white blood cells were higher than they should be but that was because I had been on steroids and because II did not have a temperature and I wasn’t wheezy just tight it proves no infection. I told them that I never usually have a temperature as its normal for me to have a low temperature as I have an download (1)underactive thyroid and that 37 degrees is high for me. Dr. Graham my previous consultant was very happy that we had found a method for getting me up on my feet again. But, she was no longer there and the consultants dealing with me now decided that they were not going to treat my asthma any longer just the COPD. They sent me home after about 10 days very ill and with a DNR on my record, I was distraught. For those of you who don’t know a DNR stands for ‘Do Not Resuscitate’. I can tell you that did not go down very well with me it was the worst thing they could have done. I was very upsetting for my family too. Well it was like showing a red rag to a bull, I immediately got a frame for it and intend to hang it up on the kitchen wall. “No way was I going to let this get ME down” I thought, “I am going to get a second opinion about this”.

After a week of struggling on my own at home, I went back up to the hospital and theyCWef2VOWoAE6Nri sent me home a day later with palliative care and respiratory nurses saying there was nothing more they could do. I will remind you of one thing – I am NOT on oxygen, have NEVER been in ICU and have NEVER had any kind of help with my breathing during a crisis only the normal nebulizer, antibiotics and steroids. I will never forget that feeling of hopelessness that I felt at that time, it completely overwhelmed me and totally knocked the stuffing out of me for a while. It might have been easier if I had a partner to talk it over with but I do not so the feeling of being alone with all this did not help one little bit.

All the hard work I had put into living with this illness and surviving seemed at that14613648-Education-and-learn-concept-pixelated-words-knowledge-is-power-on-digital-screen-3d-render-Stock-Photo moment a complete waste of time. I felt as if they had written me off! How was I to stay motivated? At first, I must admit I almost gave up and then all my facebook friends who have this illness messaged me, rang me and one traveled a full hour when she was ill herself to visit me. It was their words reminding me of how far I had come that made me realize I could not give up ever. I started to use all the knowledge I had under my belt to get better.

During those weeks I was having visits at home from the respiratory nurses three times a week and really struggling to manage. I also had carers in on a morning and afternoon. And with their help and my knowledge after four weeks I started to pull up a bit. However, I am still annoyed with the way they treated me because I really suffered for much longer than I should have done normally. Sending me home faster was definitely not a good thing for me and the stress of their diagnosis did not help one little bit. When I think about going into hospital again I get panic attacks the experience was so bad. Doom and gloom is not good for anyone with a chronic illness while there is a smidgen of hope that is what you have to concentrate on. Just like these beautiful ladies in this video show, you should never give up and a positive attitude is everything! Shame these consultants do not realise this.

A couple of the respiratory nurses that had known me for some years did not agree with the way the consultants treated me either and one made her opinions known to them. All they seem bothered about was keeping people out of the hospital and doing that by any way available to them. They are concentrating on getting people home to leave beds free for other patients coming in but this is no good you must send people home well enough to cope on their own. Is this what our NHS is coming to?

I was losing faith in the system and panicking now and wondering how I could find a doctor who was on the same page as me.  And just when I was thinking there was no way forward one of my COPD friends told me of a contact she had for a consultant at another hospital who she was very familiar with. My friend asked if she could have a chat about what is going on with me on my behalf.  Of course, I was grateful for any advise I could get. She is called Rachael Moses and she is a very busy lady so I was so grateful for her help. Thank God for social media, I contacted her straight away.

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NHS consultant physiotherapist Rachael Moses was chosen from thousands of entries as one of two finalists in ITV’s Good Morning Britain Hospital Health Star Awards.

I sent her an email with all the results of my recent breathing tests and the full story of what had happened and was elated when I received the reply that they did not agree with the DNA going on my file and that I should consult a specialist at Wythenshawe Hospital in Manchester. What a coincidence, I had already been in touch with Wythenshawe Hospital because Professor Denning at the hospital is at the top of his field in treating Aspergillus Bronchitis and I needed some advise. To read more on his involvement and treatments see –Aspergillus and Professor Denning.

Additionally as well as having that department, I found out through Rachael that they have also got Doctors and imagesConsultants who are at the very top of their field in treating COPD and brittle asthma. They are known for having one of the best respiratory departments in the UK and do a lot of research on the subject of brittle asthma and COPD. Why had I not known about them before. I went all the way down to London to see Dr. Kemp when this great hospital was only 30 miles from my front door and I can get transport to take me and bring me home. My GP has now referred me to their team and I really hope that now I will get a specialist who is rowing in the same direction as me! Because there is nothing worse when you are going in opposite directions. So what is our motto for this disease NEVER GIVE UP AND ALWAYS TRY TO STAY POSITIVE?

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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 –

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