Hi there I'm a new member on this site hope to share my journey of copd with you as i got diagnosed in June 2014. I'm still trying to get my head around it at the moment scared is an understatement, I've still got some family members to tell that's the hard one. Just hope I'm welcome here I tried another site recently and no one is talking to me, its hard enough having this without being shunned by people who have the same condition as you, sorry about the moan, just need a friend.

44 Replies

  • Hi angie 54 and welcome to you. You have come to the right place for help and support so don't worry about moaning, or anything else as there are lots of people who are happy to help. I am carer for my hubby Pete who has sarcoidosis and copd and it does come as quite a shock when you are first diagnosed. Please don't be afraid and if you need extra support just click on the red balloon and you will find the nurses on BLF are ready and waiting for you. Try and gather everyone round and tell them what you have to. They do need to know and you will feel better for telling them. There are lots of leaflets too that BLF are happy to send out so see if you can get some of them.

    Good luck to you and come back on here again very soon. Good to see you and hear from you anytime. xxxxx

  • Thank you so much for taking the time to reply it means so very much to me to know theres a place here I can come to. I'll let you know how things go with my family, waiting till after my fathers 74th birthday on Friday first bless him.

  • I will be thinking of you angie and hope your dad has a great Birthday. Spooky! xxxx

  • I know born Halloween lol.

  • Hi and welcome to a wonderful friendly site - you could not have picked a better one. There are fabulous folk on here only too willing to help :)

  • Hi Angie - Welcome to the site. There are lots of lovely people here who will offer you support and advise and a laugh! I care for my husband who has severe COPD - he was diagnosed about 10/12 years ago. As you are we were completely shocked by the diagnosis and then I did the very stupid thing of googling!! That terrified me so I just put my head in the sand for a few years. About four years down the track my husband became very ill - he caught a cold which turned into a chest infection which wouldnt clear up and then was given some drugs which he reacted to very badly and was hospitalised. That was a turning point for me and I realised that I had to be more pro-active. I needed to know more about the illness and what we could do to slow down the progression. Below are my top tips!!

    I would suggest you contact the BLF helpline though - the nurses will be able to put things into perspective and have some very useful leaflets. They can also advise what you should expect from your Doctors. I think because this is a chronic illness and there is no cure as such - the doctors tend to assume you are coping fine.

    1. Stopping smoking is essential to slow down the progression

    2. Keeping fit is essential to fight the disease - sounds silly but you need to keep as fit as you can

    3. Ask the doctor about pulmonary rehabilitation - a course of six weeks usually two hours twice a week of monitored exercise and information. This was fantastic for my husband - it put him back in control but you need a referral from the doctor - be persistent!

    4. Avoid colds/flu as much as possible - at this time of year we use anti-bacterial gel all the time!

    5. Get a flu vacc. and a pneumonia vacc.

    6. There are lots of different medications available, so if you don't feel right don't just accept - go back to the doctor and ask for help.

    7. At the first sign of a chest infection go the doctor - you need antibiotics. I really feel if my husband had gone earlier rather than thinking he would be OK some of the damage could have been prevented.

    8. ENJOY YOUR LIFE - you might be run over by a bus (as my Gran used to say!)

    Thats a lot of information - but the good news is my husband still works full time and we have a great quality of life - just a bit slower than most others and having said we are getting older so we would be slower anyway!!!

    Take very good care of yourself and ask any questions you have on here. TAD xxx

  • Tad, thank you so very much.I've just found out more from you now than I have from my docs, yes and I went on the Internet to find out more so did my husband and it scared the hell out of us, I'm at my docs on Tues I'll ask about rehab pulmonary excersices, can I ask what other exercises can you do, o must admit I was a bit of a fitness queen back in the day, but something happened on my mid 40s I totally lost my mojo for excersise and have not got it back, apart for taking my little dog for a min walk, and work of course that's it really. Xx

  • Its a pleasure - my husband got a treadmill and walks on that when he remembers! He is rubbish at exercise and I have to make myself! It is worth it though and I always feel better afterwards - it is just the dread of actually doing it - dont know why! Take care, TAD xx

  • Thank you so much for you're help and advice. Xxx

  • Hi Angie, you are resembling me so much, I was a fitness instructor for 25 years plus then the train (COPD) just came along and hit me like a brick, what a different world I am in now, I feel so cheated because I tried to eat health keep fit, look good, but yes I smoked from being quite young and worked in the coal industry for many many years didnt really the pit falls I was going to face in later life (haha excuse the pun) but I now look at it this way it is a good job I kept myself fit or I would be in a worse state than I am xxx Carol

  • Def sound very similar, I used to go to s fitness class step aerobics, then do step at home to video's for 2 hrs 6 days a week, also did aqua fit, jog every morning before going to work, I was mad seriously lol. My husband at the time used to call me the fitness queen. I used to be a calorie counter, such dedication at the time, drank plenty of water, but also smoked, liked a gin or dozen lol, still like the gin tho, cigs I've given up, but I look at myself now and think what happened to that fit lovely babe, long gone I'm afraid. Xxx

  • Hi Angie, Like you very afraid a the beginning best thing is to stay positive and I know that sounds hard, one thing is for certain talk to someone if you are down or in a low mood, don,t be afraid to accept help of any kind, I made the mistake of trying to cope with everything and it just made matters worse, now I accept all help and advice and things have changed drastically, so keep in touch its a brilliant site, Luv Carol xx

  • Certainly will and agree this a brilliant site so grateful for any support love to you Angie. Hugs xxxx

  • Angie, you have ready received excellent and friendly advice. I cant add anything except to say welcome and hugs love pergola xxxx

  • Thank you for your welcome.pergola 1 xxx

  • Hi angie nice to meet you and welcome to the site. I can't add to the great advice you have been given just wanted to say hi.

    Good luck with telling your family, however not everyone can understand so don't expect too much. Why don't you wait until you have the info from BLF and give them the bumph? x

  • Yes I think that's a good idea thank you very much. Xxx

  • Hi angie, I can't offer any more advice than u've already had from all so far, but welcome, and now u have lots of friends who will never shun any question u have, however small or trivial u think it is we are all here for u , even if it's just a bit of company . Hope ur dad enjoys his spooky birthday, take care x Sonia x

  • Thank you huni. Xxx

  • "Just a quick little warm welcome to you Angie....Megan"

  • Thanks very much. Really need this site it means so much having people, friends to share things with who understand. X

  • Hi Angie, and welcome. I am very new to this community, and would just like to say that the warmth, friendliness and advice that I have received have been brilliant. You have come to the right place. Best wishes to you.

  • Thank you clock 65.xx

  • Welcome aboard angie54.

    You've come to the right place. There are people on here at all different stages of copd or other lung conditions, so, most questions can be answered. It's a very friendly place, full of caring people that will educate you on living well with your disease, support you and make you laugh too. Stick around. x

  • Thank you everyone been so kind already, amazing. X

  • Afternoon.

    You've already been given great advice. Welcome to the family so glad you found us.

    Kim xxx

  • Thanks so much. Xxx

  • Hello Angie, welcome! hope you find the site helpful and friendly! any questions etc., fire away :) I was told I had severe emphysema 10 years ago but now I think I would say it's 'moderate', just try not to believe all the negative stuff and keep a positive mind! huff xxx

  • Cheers very encouraging words thanks so much. Xxx

  • Hiya Angie really lovely to meet you welcome aboard.It is scary when your first diagnosed and then we really scare the pants of ourselves by googling :P Tadaw has explained wonderfully in her post to you.Anything you need to know just ask away,theres not much between everyone here that they dont know so much good information and as suggested the BLF are brilliant any worries give them a call they are great.A great bunch here just waiting to help support and make you smile.See you soon Angie :) Janexx

  • Awww thank you that is so lovely of you

    I'm really so pleased on found this site. Xxx

  • Ring the BLF and ask about BreatheEasy group in your area, we meet once a month and have a good chinwag and lots of laughs, Chris xx

  • Thanks for that I will definitely ring them about that. Thank you. Xxc

  • Welcome to the group ,we're not alone ,lots of friends on here,caring people.

  • Welcome to HU. Once you find out you have any condition it comes as a shock. Try and rule it not it rule you. Try and get on a PR course and give up smoking and exercise a little bit more than usual if you can.

    The Facts are their are people on here that have far bigger problems and try not to let it worry them continue on with life (maybe a bit slower) but fight it. PMA

    Be Well

  • Hello Angie and welcome! I am going to Qatar on Tuesday to visit my daughter and, believe me, I would never have considered this without listening to the various advice given to myself and various other members by others on this site. They are am amazing group of people and I know you will be helped in every way possible. I just have to look on this site daily and feel better! Take care. Juney

  • Thank you for your kind message, hope you enjoy seeing your daughter. Xx

  • Hi Angie, I was just like you and only a couple of years older than you, this site is brilliant you get more answers and help and kindness on this site then anywhere I have turned to, it is because of this site my spirit is still good and my zest for life is good, so ask away and don't get lonely, it is a very lonely disease if you let it be, good luck and keep well luv Carol x

  • Thanks carol, I've already found people already on this site being very kind, think I'm gonna find lots of support and I'll look forward in giving support too, so thankyou o will keep in touch and talk with you again if you don't mind. Xxx

  • no problem angie message me anytime take care xx

  • Hello from me as well, I am just learning all the ropes myself but this site is wonderful for advice and support.

  • Hi Angie, just wondering if you are feeling any better with yourself! You had so many replies and helpful answers and I hope you now realise how many people are here to help! Anyhow, just curious to see how you are feeling before I go to Qatar on Tuesday. I don't know what to expect myself out there and wish I felt a bit more confident about going to the Middle East! All sorts of things going round in my head as well as hoping COPD doesn't play up too much! Take care, Juney

  • Yeah I'm getting there bit by bit accepting my situation better, its helped telling my family and getting other things in order gradually, I really hope you have a lovely time while your away, try not to worry, just go with a positive have fun with your daughter, I'll be thinking of you and when you get settled I'd like to know how your getting on, I'm sure everything will go well, can't wait to hear from you enjoy, be well love Angie. Xxxx

  • Yeah I'm getting there bit by bit accepting my situation better, its helped telling my family and getting other things in order gradually, I really hope you have a lovely time while your away, try not to worry, just go with a positive have fun with your daughter, I'll be thinking of you and when you get settled I'd like to know how your getting on, I'm sure everything will go well, can't wait to hear from you enjoy, be well love Angie. Xxxx

You may also like...