COPD

COPD

Hi everyone.

Does any one know of another forum or site or link that the main topic is asthma / copd. One you can make more sence of tests results . I know some people say it's not the numbers that count it's how you feel...but to most of us the numbers do count on how we feel.

That's why so meny people bring it to the forum.

I have looked at videos and I do know about my condition but it's the human content and friendship that people are looking for when that bring there results to us...to you.

Please don't get me worng I am in no way complaining about the (very stupid) posts..that go and on and on. Bit like my lemon. Mushrooms and chickens you could say.

Anyways again I ask if you do know of such sites I would appreciate it much.

66 Replies

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  • Hi Andy

    I thought this was the best site for COPD and Asthma.

    I suffer with both and have so much help and information on both...

    I have seen loads of replies to posts that explain results , better than my GP...l think people just put at the end of their reply ...not to worry about the numbers....as a form of reassurance.

    Have you posted your results on here....l am sure one of the members will explain every reading to you, and reply to any questions you have....

    A lot of members on here are very sensible when it comes to medical matters.

    I hope you find what you are looking for....but please don't leave here....l would miss you.

    Velvet xx

  • I suffer from copd. It can be scary but over time you learn to cope better. British Lung Foundation is the site you need. Always available for a chat. Take care

  • I know exactly how you feel. Numbers matter, so does how you feel. I would say how you feel is most important. My FEV1 great, my lung volumes not........and there in lies the problem. But I have the SOB to reflect it.........I think. So many variables.

    You can check out COPD 360. It is a good site for info.

  • Thank you Patrick ..I will be doing that.

    Andy.

  • I love this site so many like minded people. My results gave me a chart showing my lung age at 105 (I'm 55) disabled by 58 & predicted death at 65, felt so scared & alone. However lung function moderate, not to bad. This is why I go by how I feel. My friends on this site always cheer me up when I'm trying to have a bad day or point me in the right direction if I need help. I can't talk honestly & openly with my family but I can on here. I'm sorry if you don't feel the same.

    Please take care & I hope you find what you are looking for.

  • Hi Dawn

    I know exactly what you mean about talking on here....we understand each other, far better than relations do.

    My lung age is 95...My brain age 19....The way you feel helps you to keep going.

    Velvet xx

  • So true x

  • Hi Dawn, I don't know who predicted your death but they need a slap! I was told in 2007 that I would only live 3 years and I am still here.

  • It's getting better, in 2010 I was told I would be lucky if I saw 60 so as I said I take more notice of how I feel than any charts x

  • Good for you.

  • Hi Dawn, who on earth gave you a chart predicting your death? That is outrageous & so unnecessary! Nobody can tell you that!

    I feel upset for you. I wouldn't like anyone to tell me that.

    Take care 💐

  • Maybe I shouldn't have it but this is why I no longer take any notice of these things. But having said that knowing what stage I am at is helpful, so maybe this is why I am of a mind that its how I feel which matters, I hoe you find what you are looking for. X

  • Thanks Dawn, I realise now you don't take to heart these predictions.

    Yes knowing what stage you're at is helpful but as long as you feel ok, it's fine

    Take care 🌹

  • Hi Andy

    As you know i have done a lot of research on the subject and currently looking at an alternative remedy. I have checked out several forums and to be honest this is the most informative i have found.

    Merv

  • Hi Merv....yes I agree with you Merv...I been looking at a lot of sites in the USA but non so far that can match the information you can get from here.

    Am looking at how to read the spirometry results i like knowing these things..

    Andy.

  • Hi Andy

    If you post your results on here there are a couple of very knowledgeable people who can decipher them.

    I was only interested in my FEV which was 69% classing me as mild chronic bronchitis ( COPD) and asthma. But then about 6 weeks ago i had a CT scan which showed emphysema spots on both lungs so my Dr. changed my classification to moderate.

    When posting your results it would also be helpful to know which category of COPD you have.

    Merv

  • Got to go get the kids from school..probably be an hour hammering down.

  • Hi Marv. ..my condion is

    Asthma /mild copd..partly reversible. My other condion is wanting to know everything there is to know about my first one....you can only truely help yourself if you are fully armed...

    I have been given some info where to look for hopefully what I want to know.

    By the way I made the smoothly far to much to drink in one day..and it was far to rich with all the berrys mentioned so i added about a pint of cream and put it in the freezer...best ice cream ever😊

    kids loved it...

    Andy.

  • Hi Andy,

    Not sure where the partially reversible comes in. Asthma is not copd, is in the main non reversible but treatable. COPD is until now non reversible, it is a progressive disease but there are lots of things you can do to slow the progression down like diet and exercise.

    As you are mild i am assuming you are stage 1? But which COPD do you have? Chronic bronchitis and/or emphysema?

    When it says COPD is non reversible there are signs that within the next 5 years there could be new medication which could halt the progression. There are also very encouraging stories coming out of America regarding cannabis oil, which i am looking into.

    What medication have you been given?

    Regarding the smoothie the recipe is for 2, if your wife is not drinking it ( she should), then cut the ingredients by half. My girlfriend and i have 2 very large glasses in the morning, around 1/2 pint, the excess is put into a plastic flask and stored in the fridge. One of us, usually the girlfriend drinks that in the afternoon.

    Merv

  • Hi Marv. ..

    The guy am seeing is a proffer and is on the team that looks after the king...I only say this as to give you a picture off his reparation of been the best your going to get in Thailand.

    On reading the test results he said that I had asthma and copd...chronic bronchitis and emphysema ..

    I asked him how long have got live then doc.

    He said it's not like that and going by the test results I only had mind copd...in fact very very mild and so can be reversed.

    The technicians who down the tests told me that they never give the results to patients they let the doctors do that ..but as mine was so good

    They wanted to tell me my test were beautiful.

    I put on a post today you might find interesting.

    On the drink side of life..am just having fresh cold coconut juice today...best energy drink ever....

    Take care.

  • Hi Andy

    You sound similar to me except i am moderate. My FEV was 69% what is yours?

    Not sure about the reversal bit as copd is non reversible, he is probably talking about the asthma which if very mild can be reversed.

    Emphysema is the worrying one as the lungs deteriorate on average 3% per annum, although good diet and exercise can slow this down.

    Chronic Bronchitis can be controlled providing you don't get chest infections...i.e. avoid sick people. Have you had the flu jab?

    Do you suffer from any shortness of breath?

    Any medication?

    Merv

  • Hi Andy, i was looking at your spirometry results and if i am reading them right your FEV is 58%.

    You mentioned weight gain, are you on steroid meds like seretide?

    Merv

  • Hi Marv..

    58% is not mild copd...

    I am mild..very mild...you are read it worng..

    Thats why I said I wanted to learn more on reading my own test results.

  • Hi Andy

    If your FEV is 58% then that is moderate, moderate is 50-80%. Over 80% is classed as mild.

    everydayhealth.com/copd/man...

    Regards

    Merv

  • Hi Andy

    I am pleased to see that your FEV is better than originally shown, 73% is good and is slightly better than mine at 69%, but it still puts you in the moderate stage. For a doctor to tell you that you are very, very mild and that your condition can be reversed he is clearly not a pulmonologist.

    One thing I would like to make clear is that whilst I am willing to help you with advice etc. as will many other members, you have managed in a very short period to alienate yourself from some members on this forum with inopportune remarks. When I was first diagnosed I floundered in a sea of google nonsense until I found this forum and am so grateful to have done so. The members on here are amazing and many of them would jump at the chance of having your statistics. I know that I can ask a question and even if a member does not know the answer I will receive words of encouragement.

    If you need information, ask and you will receive advice, but please don’t make inopportune remarks which clearly have upset some people.

    Now that you know your statistics you can start to change your lifestyle to slow the progression and live a full life. It is all about diet and exercise and there are members on here that are far more qualified than me, having lived with this condition for 20 or more years who can guide you.

    I was only diagnosed 7 months ago yet I am still learning on a daily basis on how to cope and what changes I need to make to my lifestyle. 7 months ago I could not walk 50 paces without being SOB, yet yesterday I cycled for 22 minutes, did 60 sit ups and 15 minutes of pulmonary exercises with very little SOB.

    I have suffered for a long time with swollen feet, a sign of COPD. My right foot is so big somedays that I struggle to get my shoe on (sandal), but was reading yesterday about Turmeric being a natural anti-inflammatory so today I started to add some to my smoothie. Hopefully it will work.

    Regards

    Merv

  • Hi Andy

    Have you searched " interpreting spirometer results " ...l have and loads of information comes up.

    Velvet xx

  • No I haven't tried that one ..I will do later have to go pick-up the children from school... it's hammering down again. .but when it's like this.you can drive into the school and the teacher's will bring the children to your car...no one gets wet...but is dose take a bit longer.

    Andy.

  • Sorry to tell you Gibbro, you are on it, for better or worse. I did hear few weeks ago, somebody had the audacity to suggest this site become less facebook like and be a little more about what it says on the tin, but sadly he was hounded off. So good luck to you. I do hope that does not happen to you.

  • Hi Red_d...thank you for your reply. ....I can promise you that it can not happen to me...i have got to know the people on here and there are meny a good ones among them.

    I would like to do better then I am now...that is why I have asked for some help...

    Regards.

    Andy.

  • Hi gibbro,

    As you want a detailed medical interpretation of your results I suggest that you pin down your GP or consultant to explain them. That is their job. The people on here are very knowlegable, kind and supportive but should not be expected to be medical experts. Good luck, I hope you get that info sorted.

  • Thank you for your thoughtful reply...but I don't know why you think am expecting medical expert advice....and why do you feel the need to point out to me how supporting people are on here?

    You of all people on this forum know that gps and nurses don't have the time to go into this as much as we would like...and I don't have the luxury of the NHS...I pay my consultant by the very expense minute. ..

    Thanks for wishing me good luck.

    Andy.

  • Simply because these tests can be misinterpreted by good meaning people with little medical expertise. Your snappy reply makes it obvious that I should not try to be helpful to you from now on.

  • AS it was not a snappy reply..or was not intened to be...I answered your reply to as I felt about it..

    Sorry if it upset you.

    Kindest regards.

    Andy.

  • Thankyou Andy. Velvet's reply was very helpful I should think.

  • Yes SS so far all the the replys have been very helpful. Unfortunately I have yet been able.to look up any of the links. ..but I will look at all of them and hopefully understand then.

    Regards.

    Andy.

  • Your doctor or nurse would be able to help you, it tells me on my print out what stage I am at. I have tried to understand the numbers but don't really. Take care x

  • Do

  • Hi Andy. If you have particular questions about your numbers then the best people here to help you understand them are the BLF nurses. I appreciate you are in another country but you can reach them on 03000 030 555. It may be worth the price of the call to set your mind at rest.

  • Meny thanks for your reply Toci..they won't give advise over the phone if you are not living in the UK.

    But I have been given some useful links that I will look into later tonight when the children sleep...I know I will be up late tonight as I had a long sleep this afternoon.

    Meny thanks.

    Andy.

  • Some info here that may help. Three videos that follow on from each other.

    ... 2aI9bXRsQu

    ... Qu&index=2

    ... Qu&index=3

  • I belong to a closed Facebook site COPD uk. I find them very helpful x

  • Thank you Bless23...am not into face book...in fact there's nothing on my one...but I will give it a try.

    Meny thanks.

    Andy.

  • patient.info/doctor/spirome...

    this is a calculator of results

  • Thank you Offcut..I will look into it later on when the kids are fed and settle down.

    Andy.

  • When you get up in the morning and feel SB, do you really worry about the numbers or do you do what most folks do, try something to get your breath back? Have you talked to the professionals, the ones that can explain it too you or do you prefer talking to well intentioned fellow sufferers? If you have n't talked to the professionals, invest the cost of a phone call and ring the British Lung Foundation Helpline and they will sort you out. Then forget your numbers and get on with living. Most folk only record their numbers to compare with their annual revue but if the numbers change dramatically it is only the numbers at that particular time....a bit like a cars MOT....yes, your car is legal but only at the time of the test...go half a mile down the road and you could get done for faulty brake lights. Figures always deteriorate every year too because, guess what....we've got older and so even a non COPD sufferer's figures will have deteriorated. Another thing with the figures.....you cannot just compare one figure. You have to be proficient in interpreting all the figures together. You don't mention your age but as you are able to compose your question, I would think you would be able to follow in our footsteps and research and read up about your condition and so better understand it. One thing is for sure. You had the figures before you were diagnosed for COPD....it's just that no one took them. Now that you have them, they are worrying you? I would be more worried knowing I was short of breath etc without knowing the reason. Relax about the figures. Its again like worrying about how many miles to the gallon your car will do when you go on holiday next year....absolutely no use or relevance to today or tomorrow.

  • You are right, Brian. We too easily get hung up on the details when the important thing is living as well as we can. x

  • Thanks for reply Brain...i can honest say i have never had a response to any medical query that was not well intened and humble received.

    I consider myself to be one of the luckiest persons on this forum. ..by been given the chance to better myself long enough to do what important to me.

    I have noticed that there are a lot of people who ask and I feel more people who would like to ask about their test results. ..even they been told what stage they are in. ..they still feel the need to talk more about it...just like me.

    I like to be in a position to help..as I know how they feel.

    Dave...I am not worried about my numbers ...i believe my doctors and the technicians that I have very mild asthma /Copd...

    And it can even be partly reversed. ..it's my nature to want to understand more...

    Kinest regards.

    Andy.

  • Andy, I fully understand your point of view. My advice still stands....read and enquire more about and and learn as you go. The big problem is knowing who is correct. I would certainly stay clear of most of the foreign sites and some of the UK based ones....whatever you learn, check up on it a couple of times before accepting it...and the most important part.....don't let it become an obsession.....live with the condition not for it. BLF are 10% trustworthy as well as Royal Brompton and some other UK hospitals that are respiratory specialists. One thing we get informed of on this site and invited to take part in, is the Royal Brompton Webinairs....not had any for a while but when they do come along, they are well worth the time and they generally allow you to submit questions.

  • Sorry but that is not nice cornishbrain people deal with things differently. If we all delt with things the same it would be a sad world x

  • I'm sorry that you feel it isn't nice but I also sorry that that is how I see it. as you point out, people see thing differently but sometimes when some one points out a different approach, they might just think " Wow. Never thought of it that way" So I will carry on with my approach with a hope of reducing pressure that some folk feel they are under.

  • Put what figures you would like a explanation of. There are some well knowldgeable people on this site.

  • Thanks ponkmonser. ..I know you have been very helpful to me already. .

    Andy.

  • you should discuss the results with your gp he will explain it

  • Thank you for your reply Mandy..

    It's nearly a 3 hour bumpy ride in a taxi so it takes it out of me been on top form...I will be booking a hotel next time..and have a good rest before I see him. He is very sharp and moves ahead with speed....next time he's going to feel like it's must be an off day for him.

  • I have lung issues too, Bronchiectasis. I started looking to the internet for chat rooms.

    Try British Lung Institute website.

  • Hi Andy, this has nothing to do with your post but I thought I would let you know that my grandson has just landed in Bangkok.

    He flew out today from Gatwick, London with a party from his college in Cambridge to Dubai then on to Bangkok.

    They're visiting the famous Reclining Buddha, Bangkok Canals & the Koh San Road market. He's spending till tomorrow night there then getting an overnight train to Chiang Mai. They're spending the rest of the stay at the Elephant Nature Park where they are volunteers.

    Maybe you know of these places?

    He's looking forward to being in Thailand. 😀🐘🐘

  • hi Jessy..Yes I have been to a few of the places you mentioned ...

    Koh San market is nice in the evenings.

    Flu up to Chiang Rai for a few days and then took a taxi to Chiang Mai..the 3 hour ride whent through nature beautiful tropical forests that you will never forget.

    I did visit the Elephant park that was great...also the vilage of the long neck people was interesting

    I have some very wonderful memoirs of that of time.

    Take care.

    Andy.

  • Thanks Andy! I'm sure my grandson will have a wonderful time in Thailand.

    Take care 🌺

  • Gibbo,

    I'm 32% and still very much alive and kicking.

    Suzy

  • Hi Suzy..I really did not mean it as to couse any stress to anyone..it was met as joke really. ..but I can see it was a silly thing to say on the open forum. My apologies to you...and I will go back and edit it.

    Andy.

  • Gibbo no offence taken. Just replied to give hope to anyone with a low %. that there is a life still to live and by doing all the right things you can sustain your % and even increase it.

    Suzyxxx

  • Suzy..I have said one or two silly things on the forum but that one was really out of frustration becouse i could find how to spell...server...sad but true.

    I have after this decieded to come away from the forum for a few weeks...I have so much to do.

    Hope you keep well.

    Andy.

  • No you must not do that. I enjoy reading your posts as many others do.

    Suzyxxx

  • I found some tutorials on youtube that helped me understand my test results...

    I Love Health Unlocked.

    here is a link:

  • I tend to agree with you. When people want to know what their numbers mean. They don't get answers. Mostly they get told numbers aren't important.

    Rubyxx 😊

  • Hi, I see this is a real blast from the past! I joined this forum recently and have been reading through the posts. Yours caught my attention because I think I know of a forum that may be to your liking, inspire.com there are two groups for COPD to choose from. This site is based in the U.S. they seem to be more technical.

    Personally, I love it here at Health Unlocked where it's a little bit tech and a little bit personal. I genuinely appreciate what everyone has to say. This is the first time that I've posted here. Didn't know if you ever got the answer you were looking for, hope I've been of help. 😉

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