Drying WASHING indoors could ‘harm your health’ | Daily Mail Online

Aspergillosis

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For anyone with asthma, COPD or a weakened immune system this is worth reading its a great piece which also has a video on it too. Experts have found that clothes put on drying frames or draped over warm radiators raise moisture levels in our homes by up to 30 per cent, creating ideal breeding conditions for mould spores – and one in particular called aspergillus fumigatus, which can cause potentially fatal lung infections.

Drying Washing Indoors is Bad for Asthma and COPD – Great video on the page too.

Drying WASHING indoors could ‘harm your health’ | Daily Mail Online

 

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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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.