Hi, Hope you are all well. I was diagnosed with copd in January this year. To be truthful with all of you good people I still can't get my head around this condition. I have tried to read up about this condition from the internet but sometimes the Internet is not always right I'm really bothered about what copd can do. I get breathless also I get chest infections, coughing and I also have lots of thick mucus which I take medication to make the mucus easier to bring up. I am not going to lie I am scared I just don't know who else I can talk to who has this condition themselves. I am on another inhaler called fostair along with ventolin. I also have a condition called scoiosis which is curvature of the spine. My ribs are twisted and are crushing my lungs also. I have had surgery which I had a rod inserted and discs taken from my right side. This condition also affects the nerves in your legs, neck, arms, and back of your neck and head which causes a lot of pain.

Please can anybody tell me about help or advice I can get. Thankyou to you all..

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  • This site is a wonderful source of information and support. Do contact BLF as they can and will help. Click on the red balloon.

    Good luck. Xxx

  • If I was you I would leave the Internet as there is many sites which say this and that all you need is this. Site and you will get first hand nolage you have three stages mild sever and very sever some say end of life but I hate that word you can live life to the full to a right old age with it all you got to do is take it easy and do not over dew it and I can give you one big tip is to keep your blue pump by your bed side and take two puffs every morning when you wake up as most attacs happen when you get up good luck

  • Actually David there are 4 stages as you missed out moderate. They are mild 80-90%, moderate 50-80%, severe and very severe are next. The most severe is often called end-stage but as many people can live a long time in end-stage the term is not being used as much now. x

  • I have got a fostair also I take 2 puffs of that morning and night and I also have ventolin when I need it. I'm just a little down can't seem to pick myself up. Thankyou for the advice.

  • Hi panther6 you have every right to feel down having only just been diagnosed. I have had COPD for well over 20 years and I am at the severe stage (38%). It can be really scary at times but there is lots of support in this site. Ask any questions you like and you will get honest answers from people with the same condition. If you want to have a rant that's fine too we can all sympathise with you. The BLF have a great help line and they can help in all sorts of ways from qualified respiratory nurses to benefit help so do use them and us. We're all here for you. Take care x

  • Thankyou for your good advice I am really grateful to everyone on this site who has given me help and support. So a big thankyou..๐Ÿ˜Œ๐Ÿ˜Œ x

  • As Sassy said please contact a BLF nurse. You can contact them on line as well as by telephone. Also have s look to see if your area has a Breathe Easy Group. Where you can go once a month to meet others suffering from lung complaints. I belong to our local group and really enjoy our monthly get togethers summer trip and Christmas Lunch.

  • Hi Freefaller, can you just join a Breathe Easy Group or do you need to be referred? Could really do with joining such a group feel really alone with this condition.

  • No you just turn up. Go onto the BLF website and find the one nearest to you and you will find the name and telephone number of the person who runs it and you just need to give them a call and ask when and where the meeting is and you just turn up and pay your money - I think most of the clubs charge ยฃ2.00 a month and then any events - summer outing and Christmas dinner is subsidised. I really enjoy my meetings it is good for sufferers and carers alike,

  • Thank you so much for your reply freefaller. Definitely going to find out if there is one near to me, if there is I'll be joining up and will hopefully enjoy it as much as you do.

  • How can I get onto a breath easy group? X

  • Go onto the BLF website to find out if there is a group that meets near you. You will then find the name and number, possibly e mail address of the nearest Organiser/ chairperson and can call them to find out when and where the next meeting is and just turn up. Sufferers and carers all welcome.

  • Hello Panther, it's difficult for you and uncertainty is always hard to deal with. I bet you're imagining all sorts of awful things, but they won't all happen! You already have a lot of experience in dealing with a long term condition with your scoliosis - not that I'm suggesting it's good to have another problem diagnosed but you've learnt about coping strategies.

    As well as the good advice already given, try to get as much as you can locally. Does your surgery have a respiratory nurse? You should see them once or twice a year and they can answer a lot of your questions. Ask your GP to refer you for Pulmonary Rehabilitation - exercises in a group followed by talks giving you the information you need. Exercise is important with COPD and you'll need advice because of your back problems. The support of other group members is good too.

    It will be ok, Panther. Take small steps. Try not to see things too far ahead - none of us has a crystal ball and we can't tell what the future's going to bring. And the people here are always here for each other!!!

    Love, Sue

  • Thankyou Sue. I'm just feeling down. I don't know what to think or do. It seems like I have got one problem after another finding it hard to cope with. At this moment in time I just can't seem to find any light at the end of the tunnel.

  • I understand what you are saying Sue. It hasn't been easy with my back condition now I have to deal with another problem. Don't know what to think. I had my surgery when I was 13yrs old. I had a Harrington rod and discs removed. My breathlessness started when I was about 25yrs old and it has just got worse has the years have passed now I find day to day life difficult. I can't shower or dress myself wash or brush my hair, I have care 5 days a week from my carers and family. My ribs are crushing my lungs to because they are twisted. X

  • x x x

  • Hello and welcome - I care for my husband who has severe COPD and have learned not to google - it only frightens me. I wrote this a while ago and thought some of the tips might help:

    Each patient is different, each patient has to become an expert patient by listening to their bodies, learning what triggers an exacerbation or makes you more breathless or starts the coughing and to keep asking the doctors. If you don't feel right go back to the GP - our lovely doctor agrees that my husband and I know more about his illness than she does.

    If you have been diagnosed please talk to the BLF helpline and ask questions of your gp and nurses. If you think the medicines aren't helping go back and ask them to be changed. Come on here and ask questions. If you don't feel well ask for advise. These would be my top tips:-

    1) Stop smoking

    2) Keep fit - ask for a referral to pulmonary rehab. from your doctor/nurse and keep asking!

    3) Get a flu jab

    4) Get a pneumonia jab

    5) If you think you are starting with an infection - go to the doctors don't wait

    6) Take you meds. If you are having side effects go back to the doctors, if they aren't working how you hoped - go back and ask. There are lots of meds available.

    7) Listen to your own body and learn - you will know best


    8) ENJOY YOUR LIFE - things may change and alter but they would anyway - enjoy each day. The good memories will keep you going when things aren't as good!

    PS Ask The helpline (click on the red balloon) about Breath Easy groups - my husband joined one after his pulmonary rehab and it really helps him to meet with other people with at least COPD.

    Take good care, lots of love TAD xxxx

  • Thankyou so much for your advice. Xx

  • I'm so sorry to see you are having such a rough time at the moment. The advice offered on this site is second to none - take the advice that's being offered and you should find some relief from your ailments. I myself have offered advice on using a Dehumidifier, please take a look at this and it may be of help to you. LLAP !!!!!!!!!!

  • Great advice and nothing to add. When you can't sort something out yourself it tends to dominate your life and you just can't get past it.

    Good luck to you.


  • Why blame the consultant's secretary, Clematis? I suppose it is the easiest thing to do. Papers go through all sorts of departments at hospitals. However, I am really sorry for you Marie as it must be a mega disappoint for you. I hope things will work out for you for another time, and you will be able to look forward to your bit of sun.

  • Sorry, think I'm in the wrong post. This should be in FEELING VERY DOWN. My apologies.


  • You really need to talk to and ask questions of a person who knows your case history. You could get referred to the COPD team (nurses) and Pulmonary Rehab, and ask to see a chest nurse if they have one at your practice.

    I use all of these, and with Breathe Easy too, feel as if I have good knowledge which helps me manage my condition. Can't stop the slow decline or prevent infections, but I do live a full and enjoyable life.

    A friend of mine with COPD also has scoliosis which sounds simlar to yours and also manages his life well

    Good luck

  • Welcome to the site - lots of great information above. Take care & all best wishes x

  • Don't we all have our problems? Mine may have started when I was 38 and had my first back surgery . . . and then again at 42 when I had my second. I was then good for a few years except for a divorce and the loss of my younger 23 yo son and entry into a 12 step program. So then I was good again for 27 years until the death of my soulmate and 2nd husband of 25 years. But I was glad I was there to take care of him for his last years and last breaths. But darn if a hip didn't start to go bad, so I got that replaced. The X-rays and MRIs showed multiple deficiencies like scoliosis (how lucky I am that there are TWO curves - one compensates for the other), disk disease up and down the spine, severe arthritis, spinal stenosis, tilted pelvis from one leg 3/4" longer than the other and "mild" emphysema. Oh I forgot! L1-L2 fracture from a horse fall. So I can walk 50-100 feet before I huff and puff and must sit down on one of the lovely stumps I've placed along the trail. My, my, what inconveniences, huh?

    My 94 yo Aunt is flying here to visit me in April. Her age suggests I may live another 21 years so I better prepare for that journey. I'm accumulating wonderful memories to put a smile on my face. And how I loved to put my nose into the neck of that gorgeous horse and breath in and in and in.

  • Hello Panther6. I was diagnosed in May of 2014. Im now 61 years old.

    I know exactly how you feel. When I got diagnosed I ignored the doctor and continued to smoke cigarettes. I was hospitalized in June of 2015 for what is called an exacerbation . It was at this time I quit smoking.

    I finally realized the reality of this disease. I felt like this diagnoses was a death sentence like cancer. I was afraid. I have a wife and daughter. I don't know how I would have felt if they were not in my life at this time.

    The very first thing I did when I got home from the hospital was start researching COPD. The doctors and nurses would not really tell me that it was not curable . I went to Pulmenory Rehabilitation and the nurse there told me if I take my medicine as prescribed, get exercise once per day for at least 30 minutes, maintain a healthy weight for my age and height and a vegetable and protein rich diet with lots of water per day ( 1 quart) I can stop the progression of this horrible disease.

    I don't know if she was just giving me hope or if I really can stop this disease from getting worse. She did give me enough hope so I could at least have enough encouragement to buy a treadmill and start eating better.

    So i decided it was time for me to get as healthy as I can and see if what the nurse told me was accurate.

    I thought about it and Im 61 years old today. Just how long should I expect to live on this earth anyway? I remember 20 years ago I thought 60 years old was OLD. My dad died at 83 with COPD complications.

    Right now I'm just trying to enjoy the life Jesus has given me. This disease has enlightened me to appreciate my world and everything in it.

    It also brought me closer to my God. God has helped me deal with my disease. Besides, in my case of being an ex smoker I have to deal with the consequences of smoking.

    Drink a lot of water ! This will allow your phlegm to be not as thick and you can cough it up and out of your lungs.

    Here's the vitamins I take every day:

    1. Vitamin A - to help in healing whatever lung tissue can me healed

    2. A good multivitamin- you pick your own brand.

    3. Vitamin D - to help in healing whatever lung tissue can me healed

    4. L-lysine - a tissue repair supplement.

    you decide on how much of the vitamins above to take per day. I take the recommended dosages on the bottle.

    I also eat 4 pieces of pineapple for breakfast with whole wheat toast.

    The pineapple has vitamin C and bromolien with is good for lung healing.

    I got all this info off the internet.

    No alcohol drinking.

    Your immune system has been compromised. Your lungs are a part of your immune system and they are damaged. So keep in tune with your body and how you feel.

    You have to find your new "normal".

    Take care of yourself and you are in my prayers always,

    Mike in Montana - USA

  • Thankyou so much for your advice. Happy birthday hope you had a good one.

    The nurses haven't told me nothen much about this horrible disease either. My husband has given up work to care for me and I also have carers in 5 days a week.

    You have given me some really good advice and I am really grateful so again thankyou so much.

    You take care and look after yourself..๐Ÿ˜Œ๐Ÿ˜Œ๐ŸŽ‚๐ŸŽ‚๐Ÿพ๐Ÿพ๐Ÿ๐Ÿ

  • Try not to worry. There is lots of support on this site and as others have said, you can contact BLF for help and advice. You may want to check out your nearest Breathe Easy Group as they are a great support to.

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