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COPD blog

People living with chronic obstructive pulmonary disorder (COPD) or working with COPD sufferers discuss their symptoms, treatment and life with the condition.
  • Dear Everyone, I hope you are all keeping on top of your COPD, especially now that the warmer weather is with us.  Thought I would report back to you following my pulmonary rehab course which came to an end recently.  It was really very good but I had to keep my oxygen on constant (4) as the levels quickly decreased once I started on those exercises.   It certainly made me realise how dreadfully unfit I had become.   I guess I was the youngest one in our group so this made me more determined to do well.  There were only two of us using oxygen, but by the end of the course it had become apparent that there were some who were close to needing it as well.  It was definitely beneficial in that it gave me more confidence and encouraged me to stay as active as is reasonably possible.   I picked up some good advice too.  In particular I now make a conscious effort to breathe correctly, i.e. through the nose and then out through pursed lips.  Also when bending down to put on socks or pick anything up, it's much better to do this when exhaling.   So, yes it's definitely worth attending this course if any of you get the chance.   

    So, having completed all the necessary tests locally, I have now been booked in at Papworth Hospital for further tests and discussions when a final decision will be made about going onto a transplant waitiing list.   Whilst the very thought fills me with much fright, to think of the alternative is not very nice either, so I am going to try my best to keep thinking positively and let everything take its course.  This could turn out to be easier said than done!!

    Meantime, I am doing as much as possible to get out in this lovely weather, whether its picnics,  just sitting in the woods listening to birdsong, pub lunches or fish and chips on the seafront, it's all good stuff and I appreciate every minute of it.   We are also going to the theatre one evening next week which will make a lovely change.  

    Your comments about the electric fan Tad were really interesting.  I always have a fan on my bedside cabinet, in fact, have just bought a new smaller one.   Even with the window open I sometimes get so hot in bed so the fan is such a relief -  its nice to know that as well as keeping me cool it could also be doing my breathing good!

    Will blog again shortly but for now I wish for you all lots of good days.

    All the best, Jane

     

     

     

  • just a blog, copd/asthma

    by graham2 on 21 April 2011

    Hi all, hope you are all good, i really hope that you are still being positive buddie and keep hanging in there,things will come good i am sure, i have just had 3 breathless days, but i have blossom tree back and front of my flat so taking the anti allergy tabs, must say breathing feels easier tonight anyway.

    Interesting piece about the fan and air con might give that a go, consultant at medway has decided to give me the fit to fly test so fingers crossed, but its 120 pounds, and i will then have to inform the insurance company if i need oxygen on the flight, more money woiud'nt wonder, thomson airways have booked the oxygen at no charge which is great, so as i said fingers and toes crossed.

    My rehab course now will not be before august, so i ask for an excercise plan for home, they came today, so i can start those within the next couple days, plans 1/2 designed for us copd'ers, i will let you know how i get on folks.

    what great weather we are having it gives me that feel good factor, took the fishing out in the garden today to check over so i will soon be off drowning some maggots, and aslo sketching.

    Can anyone tell why the bricanly haler seems harder than the symbicort one to inhale or is it just me help please,derek, great to read you are doing well it helps to show that this awful desease can be confronted and we can live decent lives, i think the case is you have to help yourself, and stay postive, as derek says smile folks it makes live better.

    Buddie, we are all behind you try to keep positive, stay well take the vitimin d try to eat, you will get there.

    Anyway thats enough from me, must hit the pit,  stay safe folks  graham.

     

     

     

     

     

     

     

     

  • I have just read this article and thought it may be of interest.  Researchers have found that using a small electric fan and directing the cool air directly at the nose area (about 6 inches away) helps with breathlessness.  There is a science behind it whereby the cool gust of air activiates a similar reaction to that when diving.  Link is here.  ... http://www.dailymail.co.uk/health/article-1378224/Could-gust-cool-air-ease-breathlessness.html

    If it is turns into a hot summer we all may need electric hand held fans!!!

    Hope you are all keeping well and making hay while the sun shines.

     

    With kinds regards, TAD

  •  

    I have not written a blog for a good few days. The reason being as the title says I did not want to bore you. That's right. No drama's, no illness. No struggling. Just the plain old ordinary. Apart from a short spell when the weather decided to cool down a bit too much plenty of time has been spent out in the sunshine. Getting my Vitamin D naturally, as nature intended. Not for me the sun cream or stay out the sunshine. I lap it up like an old sea dog does the ocean. Although I am of course careful not to overdo it and get burnt.

     

    My physical signs remain good. Pulse good, as is O2 levels, for me that is. I am able to get out and do a little exercise. As my good doctor said. I am doing everything right, and am getting a good result from doing so. If like me you have poor lung function and have recently been diagnosed with severe COPD, don't think for a minute that you will never feel good again, that you will never laugh again, that for all intentions your life is over. Do all the right things, and you will like me, feel good. As you can see, I can be a little downright boring.

     

    I cannot stress enough though, if you smoke, quit now. Yes it will not be easy, it was not for me nor for many others like me, but the benefits and the extra years of life, with some increased health even with COPD will more than outweigh the initial craving. I am sure my friend Rebecca don't mind me saying but Rebecca who also has COPD packed in smoking and went from using Oxygen to room air during the daytime as a result. Startling but that is how much smoking takes your breath away. Take a vitamin D supplement, especially in winter. Exercise as much as you are able to. Get lots of fresh air and don't be a couch potato. Sleep well. Eat well. Yep this is all boring stuff, I can almost feel you yawning. But hey, it works. I am testament to that.

     

    Lots planned for the summer. I have been taking some good photos with my Canon camera. A landscape I took last week was the best I have ever taken. An image of my grands and their friends all together was again the best I have ever taken. With a trip planned to Pembrokeshire in West Wales in a couple of weeks, hopefully I will take even better images. Yes I might have COPD, my lung function is poor, but I enjoy life and there is much to live and strive for. I hope also you my friend feel the same and have much to look forward to.

     

    Till my next blog don't forget, breathe easy, smile, it's infectious, and of course be kind to yourself.

     

     

  • rehab, fit to fly, spring

    by graham2 on 09 April 2011

    hi peeps, glad to hear buddie is going on the rehab course, i had my asseement back in feb and still waiting for a date, i ahve been told i will need oxygen to start the excerses,?.

    still waiting for the fit to fly test, the consultants sec, has said when he has looked at my records he might decide not to give me the test, as it would be a waste of money, we will see.

    just had 3 quite breathless days, not sure if its the asthma or copd, and could it be the tree's in blossom outside in the road, i have been sqeezing,[ not sure if thats spelt right,] all day, feel better today but i wish i had the answer to this one, it can be complicated as the inhalers don't seem to work.

    is not the sun great, been down my local lakes to check the fishing, thats next on the list, of things to do.

    dose anyone have an opinion on the spiriva powder, or mist, is one better than the other. i have to say that things with the fit to fly, and rehab, appear to grind along very slowly with my local hostpital, and the same with the local resp,team.

    well folks got to go up early to take the wife to work, take care all, stay safe   graham2

  •  

    Last week the day I had been waiting for finally arrived. The day I finally got to see my lung doctor to hear the good, or bad news whatever it might be. It turned out to be both informative and worthwhile, with me leaving with a smile on my face. I arrived to be weighed, no problems there. Then to be sent to x-ray for another lung x-ray. Something I am always rather nervous about in case it shows I have cancer starting. So it was a relief to find out later that not a lot had changed in my lungs.

    I was informed my doctor had written to my specialist as he was concerned I was having too many requests for antibiotics and steroids owing to infections in the last 18 months. I was assured that I was the one that was right to request them and knew my body best. Also that after 24 hours of a bad chest if it did not start to get better. Start hitting it with my requested medication. I was informed that of course it is the nature of the beast, that us with copd will suffer more than our share of chest infections, and that we should be able to request what we need and have it immediately.

    I am taking all the right medication, so nothing changed there. After many questions and answers, some questions from me, others from my specialist, I was informed that I was doing everything right. My lung function bounces between 25% and 27.5% at present, meaning I am in the severe copd range. But the doctor is pleased how I am coping. He went on to explain that some with my FEV will be in a much poorer shape than me. Some cope well, others are very unwell and complaining. He continued to explain it all comes down to attitude. A bright cheerful optimistic outlook like I have will have a vast effect on the patient's outlook. I may have poor lung function. But I am going great guns. OK I can't run a mile, but I smile, laugh, enjoy life and always have supportive cheerful people, and family around me. Nothing negative is allowed around me. That is to me important.

    The doctor also told me that apart from keeping muscle tissue well, exercise has a second very great importance in that it makes us copd'ers breathe more deeply. Light or shallow breathing is not helpful and is bad for us. And the truth is just about all us guys with this illness are shallow breathers.We need to suck that air in as much as possible, after all we have damaged lungs and need to get that oxygen in. So get out that chair at least once a day for half an hour, and start to do something that will make you a little breathless, and get you breathing deeply. You will be helping yourself and start to feel better into the bargain.

    Lastly the reason I wanted to see my specialist was to get onto the Pulmonary Re habitation course. A course has just started so I missed that, but I will be on the next one, that starts in about three months time. I have been informed that it will help me and I am pleased to say I am looking forward to starting it. Even better is that the course is at my local hospital. How good is that:-)

    So there we are. Things are looking good. Summer is on the doorstep now too. Every reason to smile. And you my friend. Don't forget, a positive attitude, smile, keep chirpy, get some exercise, enjoy life, and you will not only feel better, but live longer. Beat the demon. You like me can do it:-)

    Till my next blog. Keep smiling, and most of all, breathe easy..

  • fit to fly/ and steratide.

    by graham2 on 30 March 2011

    hi all well the resp,nurse tells me i have to go to my local cardiac dept for the fit to fly test, not sure ihow i will find having a mask covering my face, apparenly they then use air the same as it would be at alltitude, and then add oxygen until they are happy, plus take blood test, this will cost me 120 ponds as its private. then give me the results in writing.

    why are the insurance companies not asking for the fit to fly letter, how would you stand if something happened and you had to have medical help, insurance null and void, its a grey area?.

    i tried using the steratide found it made me whezzy sometimes so will ask doc to go back to symbicort.

    well folks is'nt it great to have that extra light in the evenings and some sun makes one feel better, looking forward to fishing got my licence, and wanting to go, just needs to be a bit warmer.

    i am going totry a mow the lawn next week, something i have,nt done for about 4 years, that should take a while, need to work the lungs.

    buddie mate keep fighting there's light at the end of the tunnel, i too have just had two rough weeks but it won,t beat me,  must go now stay safe peeps  graham2

     

     

  • hi all, hope your all o/k, i have posted tonight because i would like some feed back if possible.

    un beknowing to me and having seen the copd nurse of the respt, team, and having been told by that nurse that she would write to my doctor, i now find myself on, spiriva respimat,steratide and bricanyl.

    firstly i find no benifit in the bricanyl?, the respimat having used it a week seems not to have made any difference, and the steratide i have not touched b ecause the symbicort suits me fine and i use use this 12 times a day, steratide twice a day. i am seeing my doctor on the 4 april so will speak with him.

    my problem, the fit to fly, change of  puffers have all knock my confidence, and i now find the thought of flying frightens me, sad is'nt it.

    can anyone give me any feed back on these new drugs i now have, this would be much appreciated, think thats how its spelt, many thanks peeps.

    dereks news was good and so has the weather been great, daffs,crocus, tree buds etc, roll on summer. to be honest i felt better before all of this resp team stuff.

    anyway onwards and upwards,  stay safe people   graham2

  • Have been struggling with COPD (with ASTHMA) now for the last two years, though the last 12 months have been quite bad, the last 4 months have really hit me hard. The winter has had a major impact and I have struggled desperately with the cold. My rented home is only single glazed and electric heating only. Not a good combination for COPD suffers. I recently had to pack in work as my employer was unable to reduce my working hours. I was physically amd mentally exhausted having had my third infection in three months, several courses of antibiotics, steroids, 3 types of inhalers and trying to work full time. It all got the better of me and have spent the last month quite poorly trying to fight it all off. After a day in hospital undergoing various tests etc I was put on steroids in an attempt to rid the infection. The xray now showing COPD progressing in both sides and causing numerous other physical problems.

    A further course of antibiotics, carbosisteine to reduce the mucus build up followed by my current 6 week course of steroids and some much welcomed warmer weather, I am now starting to see a little more light at the end of the tunnel. The doc is referring me for Pulmanory Rehab, Nutritional Therapy and am really pleased I have some much needed medical support. It has felt a hard tough year (almost felt like giving up I got so low with everything). My son and daughter (in their 20+'s) have been great but its hard to try not being a burden or for them to understand why you can't be 'supermum' anymore or look so pale and thin. You just feel a constant moaner or useless and too exhausted to even breath or do the simplest tasks some days.

    I have been researching over the last few days the causes of the dreaded COPD (having been told that it is down to smoking by the doctors). As well as smoking there are heriditry factors, Alpha 1 Antitrypsin deficiency, certain occupations and environmental carbon emissions, nitrogen dioxide (air pollution from vehicles) and allergens that can cause the condition. Yet I have not been asked if I have ever worked in a Mill, in a Foam Fabrication Factory, in the Printing / Textile Industry, worked in refrigeration / frozen foods, nightshift or been in contact with Asbestos, excessive dust, damp, inadequate / poor ventilation, live near a busy road where the nitrogen dioxide limit has exceeded DEFRA's permitted mean objective for 3 years (and have never been informed of my exposure to it by the council), or subject to 3 major Gas leaks at a place of employment during working hours. The answer to all being "yes". Nor have I ever been told that Isocyanate (found in Polyurethane foam manufacture, paint, inks and other subtances) causes inflammatory changes in mucous membranes of the respiratory tract and are the most frequent cause of occupational asthma in the U.K. and is a prescribed disease (PD D7a). Toner used in photocopiers / laser copiers contains styrene-acrylate copolymer and is "suspected" of being a carcinogen, a cardiovascular or blood toxicant, endrocine toxicant, neurotoxin and respiratory toxicant.

    I also discovered in my research on the webs that Horses suffer from COPD and have not to my knowledge ever recalled seeing a Horse with a cigarette in its mouth? Huh? To add to this I came across some quite astounding percentages of town populations in New Zealand who have developed COPD and a fiqure equating to 10% of the children?  While I am not denying that smoking or having smoked does not help the situation I do think that doctors / health service are too quick to blame everything on cigarettes before ruling out or testing for other factors more likely to have caused or aggrivated the condition and that Pulmanory Rehabillitation could be more beneficial were it offered from the start rather than nearer the latter stages. Idea Thats my view anyway. Also if a person has been 2 stone or more underweight for over 30 years why wait so long to offer / provide them with nutritional help? There is a lot more to the cause of this than just smoking!!!!!!!!!!!!!!!!!!

    Would be interested in what research anyone else has discovered, family history, other complications or what trades / employment other suffers have been involved in? The more we can piece together the more knowledge, understanding and awareness / support or preventative measures may be available for future suffers.

  •  

    It's done. All finished. Over. And I am elated, even if it left me a little worse for wear. Not that I will ever do it again. I will die here. What am I on about:-) The move of course. Those reading my recent blogs will be aware of my pending move to a flatter area, allowing for more mobility. It was a good move for that reason. I was left with every bone, every sinew in my body aching. Although after a day of sleeping more than usual, and doing little, that has now passed and life is starting to get back to normal, and the aches, they have passed.

     

    It did seem like a big hurdle to make the move. After all with limited lung capacity and getting breathless all too easily much of the physical work has to be done by others. And there were many times when I was very out of breath as I tried my hardest to do my bit, if only with the small bits, and days when I at the end felt totally 'done in'. I lost four pounds in weight. Although I have no doubt that will go back on as I relax and get into my normal way of living. But, non of this has been bad for me, in fact quite the opposite.

     

    I have mentioned exercise in my past blogs and how important it is. Many people after having found they have copd, and then going onto having problems with walking without getting breathless to a lesser or greater degree, have decided to solve this problem by taking the easy route. And that is to sit in their chair, remote in hand, watching the TV, and doing as little as possible. They have then seen their condition rapidly worsen, till within a short year or so. They have simply died. Sorry guys, yes we do die of COPD. I will most probably do so. Although in my case I don't intend to sit in my chair and wait for it. I am going to make sure, even if I am out of breath at times, to get out and about, and get a little exercise.

     

    So while you are struggling at times, asking your partner or friend to wait a little while, 'Just got to stop a minute to get my breath', maybe countless times so you feel you are a pain in the rear, something good is happening. What is happening is two fold. Firstly you are making your lungs work hard. They might not be coping too well but they are working so hard any muck in your lungs is going to want to move and come up. Yes, you will cough. And you may bring up phlegm, but hey that is good.

     

    Secondly and most important you are building or maintaining your muscle density. And that is what is going to help you to live much longer than if you were the guy sitting in the chair. Muscle uses very little oxygen. Flab uses lots of it. And with muscle density you will do everything easier than you otherwise would. If you have got out of practice start to do exercise now, short walks is fine, and you will find in time you will get a little less breathless, as your body requires less oxygen to function. Keep the effort up, and you will live many more years. Sit in the chair with no exercise, and meet your maker quicker.

     

    Yes I can be very blunt. But I make no apologies. I want to live for a good few years more, even though I have severe COPD. The only reason I am around now, I have been diagnosed since 1987, is I have led a very active life despite my slowly worsening illness. Ok it has got to the severe stage now and I am now disabled. But a diagnoses of copd is not a death sentence. But the start of a challenge. Well that is the way I see it.

     

    For now though, on this nice sunny spring day, I am going to step outside the door and admire all the fresh growth spurting on the trees and in the ground. Whatever you are doing, remember, smile, it is infectious, and most of all, breathe easy.

  • hi all, can i firstly say sorry for my rant, the problem isthose around you, eg- the wife dont always understand whats going on, example,

    .yesterday i rang the rehab team because one inhaler had been changed, the spiriva restimat was fine but they had changed my symbicort for seritide unbe knowing to me, whilst on the phone i mentioned i was booked to go to mexico in june, i was sharply told that was unlikey because of my oxygen levels. well i felt as if i had been kicked in the gentlemans area, having paid the holiday and insurance this week, why was this not discussed at the assessment, having told them i was due to fly on holiday, i now have to undergo a fit to fly test, at my expense.

    i have felt quite good over the last few weeks, but know feel deflated and have a loss of confidence, i have had this copd for 6 years now and have only up until finding this site, got any real information,[THANKS TO ALL OF YOU], i can only assume that my doctor whom i believe to be very good, as therefore only gone through the motions?. what a statemaent to make, because its been the arrival of a new doc to get things moving,for me,

     i beleve that this copd is not taken seriously enough in the nhs, and i have come to the conclusion its only people like us that can do that.

    you know my wife works hard for her holidays and it seem very unfair on her.

    what i will say is that i think, no, believe it comes back to the same old story in britain today, nobody whats resposibitly so push it on.l sorry for the rant, i have had a few bevvies wine, speak later graham

     

  • First hi to newcomer Graham. Always good to see new bloggers. Keep up the D3 as I am sure like me you will start to reap the benefit in time. I often see comments about Spiriva. This comes in a variety of names from what I gather, and when it first came out and was prescribed was more or less hailed as a wonder drug. And it does seem to help us with severe copd greatly.

    I know when I miss mine, I have forgotten to take mine a couple of times when I have been preoccupied, I soon know about it as I get much more breathless than usual by next morning. I came across one guy whose nurse had advised him to take it in the evening, not morning, so decided to give that a go. The idea is our worse time is always in the morning when we first wake up, the time perhaps when we have the least 'puff'.. If you take it in the morning, you are at the point where the previous days inhalation is not doing a lot, and you are at your worse anyway. This makes it harder to take the inhaler properly. If you take it in the evening you will have more puff in the morning, and it will be easier to hold your breath for a few seconds before exhaling out again. I found the advice was sound. So thought I would pass on the tip.

    I am in the process of moving home at the moment. What a job. I had forgotten there was so much to moving. So many to contact, so much to do. The reason for the move is to make my life easier. A move to a flatter area means my mobility will be increased and of course us with severe copd have to do anything that makes our life easier. We have been moving small stuff in the car bit by bit. My wife does not mind doing some lifting. Even so I have to be very careful and be prepared to take a day out. I get very breathless if I start to push myself too much. And the only way to put that right is rest. A long rest that can mean a day out. However, come Sunday the boys arrive to do the lifting of the main furniture and we will be in. I will of course be so pleased to get this move over with and for my life to get more back to normal. Again I have to be very careful not to push myself too much, not to worry or get stressed, as stress in itself will make me much more breathless than usual. When we have copd there really is so much we have to take into account so as not to adversely effect our health. Remember, if you have copd and are having a problem, you are not alone. Chances are we are all going through the same.

    For now though, today being a chill out day, a day off from moving until tomorrow, it is bye from me. Take it easy my friends and don't forget, keep a smile as it will keep you in good spirits and lift others, and most of all, breathe easy.

  • copd asthma active site

    by graham2 on 16 March 2011

    hi  i joined this site because i thoguht it was active, i now wonder if it was worth the effort?

  • living with copd and asthma

    by graham2 on 14 March 2011

    hi all hope you are all ok, great to see the daffs out and some sunshine 3 days its great, and the clocks go forward at the end of this month also.

    had a not so good day last friday went outand sat iin the car, waited fot the wive, breathless, but saturday, sunday, and today have been good, i never sure if its the asthma or copd thats giving me problems, has anyone else got both conditions, would like to hear how you cope.

    not heard from rehab yet, need to buy trainers, and jog pants, much to the wifes amusement calls me 118,as per the telly.

    i have heard this course is really good ,i hope so, anyway going now,  sweet dreams, stay well graham.

  • living wih copd

    by graham2 on 11 March 2011

    hi tad thanks for your blog, the spiriva i mentioned is called respimat [still spiriva] but they say a lot better because its a fine mist and gets into the lungs a lot better, look it up on your computer, i to find stress upsets my lungs and have attacks of hyper ventilation, not nice, but the rehab team tells me it could be habit, and they will adrees the problem.

    what really annoys me about this desease is i can feel quite good today, and get about , but tomorrow wake up breathless, and no body seems able to tell me why, my rehab course should be the end of march,i will keep you updated.

    i to doubt the use of bricanyl, it dose'nt much for me, but prefer fomoterol/bromide, but you can't use that with spiriva, like your hubby i use symbcort 2006. anyway not been very good today hope tomorrow is better, tell your hubby not to stress, it makes life a liitle better, i live for today and more or less do what i like, its my time of life.

     well its late whatching juls holland going now,   be safe and well  regards graham

    .

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Liz W has been diagnosed with moderate COPD after 25 years of smoking
Pink Puffer developed emphysema and was found to have Bronchiectasis after years of smoking
Richard T. is 46 and has managed his COPD for 7 years. He's since given up smoking and taken up exercise
coach driver
drives for wheelchair users and disabled children and has COPD. He hopes to return to work soon
TAD1 is a trained physical therapist and has cared for her husband, who has COPD, for three years
yogascot is 73 and discovered he got breathless easily over 40 years ago. He suffers from emphysema, osteoporosis and is A1AT (alpha1 antitrypsin) deficient
GillMick was diagnosed with COPD three years ago and has just been classified as severe
Bad Tink
is caring for her husband, who has been told his COPD is terminal
HazelT
was a smoker for 30+ years. Her COPD began around 4 years after she gave up
steady joe
is a grandfather, COPD sufferer and story writer
Derek Cummings wishes he'd taken his COPD more seriously before it reached a more severe stage
Geoftheminer
is determined to live as full a life as possible despite being diagnosed three years ago with COPD
Eileenbetty
was diagnosed with COPD 8 years ago. She has been seriously ill after a severe chest infection
Benbow
is 80 and developed COPD after having part of his lung excised in 2000
Christopher
was diagnosed with COPD six years ago. His condition is now complicated by osteoporosis

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