Asthma, emphysema and COPD!

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I am only 35 but have always had asthma and stupidly smoked when I was younger!! I know exactly the damage I have caused myself but I really hate the side effects of Prendisolone(steroids). I have now been on these for 3 years now, every time I get down to a low dose I get another chest infection so have to go back up to a high dose. Due to these I have also been diagnosed with oestioperosis. I was told last week I have 37% lung capacity left which in my consultants words is \"at critical levels\" but he would not give me a straight answer to how long I may have left. I have an 11 year old son whom I love dearly and my husband is amazing but it is hard for them to watch me gasping for breath on a daily basis. I have a nebuliser next to me at all times, even have one for the car now which is great (highly reccommend it!!).

I hate the side effects of steroids as I have the \"moon face\", have put on 3 stone and for a fashionista who was always a size 8, Im taking it bad!!

I know they are keeping me alive but is anyone else in my situation who can give me any advice please?

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  • Posted

    Hi

    I have just been browsing through the internet looking for details of COPD, my husband is 40 and has always had chronic bronchial asthma from when he was a child, he has smoked since a teenager!!!!!!, and has just been diagnosed with COPD. He has been on a cocktail of steroids and inhalers since he was young, I have just read him your details, and he has told me to tell you to drink plenty of water.

    He too now has osteoprosis because of the prednisolene, but the doctors can prescribe a weekly tablet that you can take to try and counteract it, called alendronic acid (sodium salt).

    The doctors have now also referred him to a pulmonary rehabilition group, which aims to try and help people with COPD to maintain a better way of life through exercise and help in stopping smoking and raising awareness of how the disease is affecting your body.

    He took a spirometer test, and has lung function equivalent to a 102 year old!

    Unfortunately he hasn't stopped smoking yet, but hopefully he'll get his head together to see how it's affecting not only him and his health, but

    also how it is affecting mine and his daughters life.

    As you say it is not easy being the partner of someone with this disease and having to sit and watch them struggle to breathe in front of you, or to watch a relatively healthy person with controlled asthma suddenly deteriorate within 12 months, to now no longer being able to work, to have to have a nebuliser constantly at home, to having to call an ambulance because not one of his many tablets or inhalers are working is not something I would wish on somebody else.

    The doctors have not said how long he will live, but the pulmonary nurse who came to assess him at home said if he carried on smoking he would have a few years at most. If you met him he's the life and soul of the party, constantly telling jokes, then when he leaves the pub (we only go twice a week) struggles down the road to get home.

    I came on hear to give you some advise to drink plenty and seem to have given you song and verse on how my husband is.

    I wish you and your family all the very best for the future

    Anita x

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  • Posted

    Having read the last comments I thought I would add a few notes in hope of either giving some small gem of hope. I am 61 still working, well I was until today, I am written off for another month having had another bout of lung infections, I also have COPD and yes I smoked as a yonger person, and only gave up six years ago, yes it has made a difference to my well being, but of course it is too late to be of great advantage to the condition (I have also been told I have the lung function of 100 year old).

    I have found that drinking water, instead of tea and coffee all day helps, cut out as much of dairy products as possible, and eat healthily, boring I know but I feel it makes a difference.

    I have started swimming, and although I cannot swim far I feel that because I am making the effort to do something it must be doing me some good, the hardest time for me is when I am bad I cannot pick up my grandchildren and get upset because they see me coughing, and gasping for breath, I hope one day they find a cure, at least people now know what smoking does to you and maybe youngsters will realise how horrible COPD is, I wish all well and hope that you stay well through the winter.

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  • Posted

    hi, first a bit of background, i am 52 work part time, have rhematoid arthritus ( which often means steriods ) forlast 15 years, astma for last 12 years, and now copd for last 18mnts , and each illness seems to encroatch on the other , i still smoke as i have for last 30 years though now only 10 per day from 40 per day, think i lack the will power and desire to stop compleatly, i have 3 sons 2 still at home and an active helpfull careing wife, 3 years ago i had a lung infection which i was unaware off probibly due to the steriods masking the symtoms, but while working and struggling to breath over a 6hr period i made my way to outpatients in the local hospital and only just made it , adrenalin injections bringing me back round, the emergency dept had set up to open my airways with scalpels , from that moment on i have monitored my condition and had my treatments drugs inhalers ect altered numerouse times to find the best possible combination, the difference between now and in the past is chalk and cheese, bearing in mind that this is a progresive condition, so my point if any is that there are combinations of drugs and delivery systems which can alter the effecs and progress of copd, so continue to seek them out and never suffer in silence progress is being made, but try to find what is the best for you from the vast array of help out there, a change in treatment can alter things in a way you might struggle to believe, ... so stay positive and upbeat yours truly david
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  • Posted

    First of all I'd like to say that I completely understand what it is like to have a moon face! I've put on about a stone in the last 3 months that I've been on steriods, and it's doing my head in really. I hate it!

    However, I can't complain too much, because as the first person said.. they are keeping me alive!

    A few weeks ago, I was told that I had early signs of COAD on my lungs from a chest x-ray I had done. I'm only 21, and I was told that COAD is more common in people over 40. I've had asthma since I was 7, so I'm used to dealing with being out of breath, but this has hit me like a hold in the head really. I've tried to find other people that are young, that have COAD, but I can't. I know it's only early signs, but unfortunately paranoia does set in! However it is good to read about how other people are coping with it. At least I know what to expect. I've never smoked either, but unfortunately my mum did a lot in the house for at least 19 years of my life.

    I'm going for my first appointment at the hospital next week to discuss everything. I think I've got the start of a chest infection too, and I was only just coming down off the steriods. Very frustrating!

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  • Posted

    HI i am new to all this and have been told that a blog i posted on another page may help others, below is a copy of the first blog, hope it helps

    Hi all and Bob (that's Robbie but as his Dad I call him \"Bob\"wink

    First off thanks for all the good things you have posted in this blog (blog I think that’s what it’s called)

    The health management system we use has improved Bob's Ma's life, her condition is still progressing so without the transplant it’s all about “quality of life” and that has improved.

    The system is so simple and shows up so much I can not understand why it is not in use for everyone with this condition. We can read the chart and pick up any changes and act on them BEFORE things get so bad that we have to be treated for a flair up in hospital with aggressive drugs, that’s expensive for both the NSH and the person.

    This condition is one of the one’s that all the family suffers from in one way or another especially if they are close as we are, when a flair up happens we all suffer, therefore the fewer of them the better for everyone.

    This health management system was born out of the frustration of not knowing what was happening, the lack of education for both the sufferer and the carers gave us a lot of problems and worry at first so a wee thing like this helps so much.

    I am told that the system is similar to the system used in I.C.U. why not use it sooner and nip problems in the bud ?, it’s a system of pre-emptive diagnosis were patens can be compared to a base line taken when the person is “well“

    We use 2 criteria, blood ox and pulse, you could use temp and blood pressure as well but in our case they do not change significantly.

    Maybe we can get a quorum to run the same system at the same time and compare notes.

    Robbie’s Dad

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