New girl on the block: C O P D and... - British Lung Foun...

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New girl on the block

C O P D and totally confused

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Hi and welcome nannyb. Feel free to ask any questions.

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Hello nannyb welcome. This is a friendly helpful place.

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A very warm welcome to you nannyb

cx

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Hi cofdrop thanks for the welcome nannyb

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Hi, get used to feeling confused, I think its another symptom!

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Hi nannyb, here is a link to the BLF pages about copd which you should find very useful.

blf.org.uk/conditions/detai...

If you click on the red balloon at the top right of this page it will take you to the link for their website which has loads of information, and also their telephone number if you should wish to phone their helpline. Sadie xx

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Hi Sadie thanks for the info nannyb xx

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Thanks all for the welcome, I'm two years down the line with C O P D and yes mcnally I think being confused is a sympton. your just given medication and sent on your way.

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A warm welcome to you nannyb.This is a very friendly forum with loads of help,support and laughter.With the BLF to ring for any pro advice,nice to meet you see you again soon.:) Janexx

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Hi Jane thanks for the welcome theresa xx

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Hello and welcome it is a confusing time - ask any questions you have lots of lovely people! Take care love TAD xx

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Hi Tad thanks for the reply, nannyb xx

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Hi and welcome, just keep coming her to pick up info and support. Ask any questions, however trivial you may think they are and you will learn loads to help you feel less confused.

Use your energy to be pro-active to get help from your GP, your consultant and the respiratory nurse at you practice. Above all, eat healthily, keep to a healthy weight and EXERCISE . There is a course you can go on called pulmonary rehabilitation (PR) you must go on to learn how best to get well and stay as well as possible.

Take care, peeg

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Hi peeg Thanks for your reply. Last march I had a lung function test at my doctors and it was 67, and was recommended to go to PR. I had an appointment on the 17th September and my lung function and dropped to 46,My meds were changed to Flutiform 10mg twice daily with spiriva and ventolin when needed. Had xray and blood tests and the doctor said he would see me in six weeks. telephoned today because no appointment had come through, and was told the doctor at the hospital has referred me back to my doctors with no future appointment. I'm assuming everything is ok, but I have made appointments with my doc and respiratory nurse. no one likes to forward any info.sorry that you have had to read about my frustration nannyb xx

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You're right to be frustrated, you've every right to know WHY you've got copd and what's causing it.

Most of us will have had a CT scan to confirm diagnosis. Now, my scan took the best part of a year to get with a great deal of frustration for months.

If I could have afforded it I deffo would have had a private one and if I'd known it would take so long I might have borrowed the money.

I've now seen for myself the damage in my lungs (and it's not much so I'm very lucky) but the main thing is I know, my GPs know that I don't have the bronheactasis or aspergillosis they thought I had.

Give the BLF a ring, they are a mine of information and can help you with questions to ask your respiratory nurse when you see her/him.

If you smoke, now's the time to give up. You will get a lot of support here. All the best, P

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Hello nannyb welcome to this happy informative place, ask away and clear some of your confusions away, at least the friends on here know what they are talking about first hand, always bearing in mind we are all different, having knowlege of our illness gives us power, the power to live our lives as we wish, its the coping skills we have or learn that keeps many of us going strong, I am a very postive person, not living on cloud nine tho, and when I tell others, or new carers of my illnesses, they dont seem to believe me, cos of the way I act, it does get annoying at times, cos they compare me to other people like friends or family who are at same stage as me but act so very different, pheww sorry didnt meant to prattle on.... so keep strong in the faith that you are in control. much love to you nannyb.. please keep in touch with us all, we even have a lot of laughs here aswell Joan x

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Hi Joan Thanks for the reply and nice to hear from you. I'm seen as a very strong minded person,everyone I know holds back and feels they have to watch what they say. I have all way's been one that say's what they are thinking, not to offend, just up front. But last few month's have been have been withdrawn in my feelings, anyone asks I'm fine nothing wrong. Cannot seem to share how I really feel, what I'm thinking and sometimes how scared I feel, even family. Sorry to put this on you, just a relief if not talking to someone just to see it in writing. Theresa xx

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Hullo, nannyb, I have the reputation of being honest and upfront which is good, but I have found IN my case, I have to watch what comes out of my mouth. I vet these messages over and over as people can take things the wrong way, and then I feel bad.

Sometimes when people ask how you are, easier to say "fine" although that could be far rom the truth. And the look of relief on their faces.

It is so good that you can voice your thoughts in this forum. Some lovely people here. Love annie x

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Hello nannyb you are not putting anything on me, im strong like you like, always upfront, but of course there are also the down days, even feeling sorry for myself, it doesnt last tho, and yes I get scared at times, I am open like a book, however to protect those I love, being my family I dont say to much, I am what you call a plodder, so I just keep plodding on, I am pleased you came here, its the safe place to share our thoughts, our feelings, our fears, lets face it we dont want to do this to our families, they know the score anyway, but I will say if I am asked I will say how I feel, I just say oh im having an off day, like many of our friends on here say it aswell. please continue to share with us, everyone is so friendy and supportive, and we all need it at times, then when you are feeling a bit better, you to will be answering posts to others to help them, we cant help it, its in our nature, I am going to a breath easy group in nov, if you ring the blf number on the red balloon, they can tell you if there is one near you, at least we can meet others who are like us, and more understanding, I sometimes just read the posts and seem to tired to answer them,.... then other days, like today/night I cant stop lol, so hey ho cant keep us down for long, thanks for your post Theresa and welcome to the family bless yur Joan x

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Hello and welcome nannyb. good to see you found this great crowd of people, there's always someone around to talk to and answer any questions and give advice or just to share the good the bad and ugly days/nights with, we all get them. Take care.

Ann x

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Thanks Ann, yes there are a great crowd, and it's lovely to know we can say what we are feeling. good or bad.

nannyb xx

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Hi Nannyb, welcome to the family. As you have seen so far we are a friendly lot telling you about our own different experiences. Just don't be frightened to ask. Berwick xxx

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Thanks for the welcome, look forward to many conversations. nannyb xx

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Hi Stitch thanks for the welcome. And I have made appointments with GP and nurse to ask what was in the report from consultant. thanks again speak soon nannyb xx

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welcome to the gang! A good bunch of peeps on here.

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Thanks for being part of welcome wagon, everyone has been great. nannyb xx

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A big warm welcome to you, ask, vent, cry or laugh were here ready to support each other.

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Thanks for reply, and I'm sure I will do all those emotions. More laughing is definately what I need to do, I will have to find some joke's to share. Thanks again nannyb xx

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Looking forward to the laughs :)

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A bit late on the scene, but a big welcome to you. Some really interesting info to study. x

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Thanks for the big welcome nannyb xx

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warm welcome,glad that you joined us,bernicexx

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Welcome Nannyb

Give the helpline a call and ask for an information pack to be sent to you. Keep focussed on completing the PR course, its highly recommended and will help you understand and manage your illness so much better.

Best wishes BC

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Hi BlakeyC I will ask for an information pack, but the PR course is out of my hands, the consultant is not letting me do it. Don't know why? will ask GP and Nurse when I see them next week. Thanks again nannyb xx

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hi Nannyb, Yes this can be a frightening illness, But joining here has made me feel much better, I hide it quite well from friends and family,but this gets so hard at times, Having to refuse trips away when I would have loved to have gone, just meeting friends in town, I say I would prefere meeting in the pub, , know I can drive straight onto the car park,Sure people think that I am going miserable in my old age, Invitations to any thing set me in such a worry, totally frightened, what excuse can I say, Sorry this is just what you don't wont, forgive me ,but very pleased to meet you.Heather x

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Hi Heather Thanks for your reply and what you said was just how it is. We don't realise what real independence means to us till we start to loose some of it. I find myself getting frustrated when starting a task that I have all ways done only to be reminded that I cannot do it anymore, and I'm too stubburn to let someone do it for me. I have found myself getting more angrier that last six months, I stated to my husband the other day, after feeling guilty. that I couldn't help it but that I just feel angry at everything and everyone and his reply was ( I KNOW) ha ha. what you said is what I need to hear, knowing your not the only one with those feelings. bless you nannyb xx

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Hello and welcome nannyb I to was confused when first diagnosed with c.o.p.d. This site is wonderful though some really nice people to interact with!

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Hi and thanks for your welcome, everyone is great on this site. And I'm glad I joined. I was diagnosed with c.o.p.d. two years ago and I wish I had joined then. Instead of leaving it this long and just worrying about what it was I had. I don't know if it's just my GP and nurse in my area that are not informative, but it has all ways been from the beginning. You have this, Take this and see you if things change. hope not.. thanks again and look forward to speaking again nannyb xx

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Hello nannyb, we are people who have COPD. I have bronchiectasis, some others have other ailments. This makes us somewhat more knowledgeable. But there's a British foundation Helpline which is staffed with nurses who know. Click on the red balloon for their number, they're friendly too.

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Thanks for the info, and I will give them a call. This site has already made me feel better in mind if not body. thanks again nannyb xx

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Hi nannyb and welcome to the site. xx

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Hi and thanks for the welcome nannyb

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Hi and welcome you have found a great site lovely people and very helpful Marian xx

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Hi Marian thanks for the welcome, and yes everyone is great on this site. And I have found friends I didn't know I had all the best nannyb xx

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hi welcome to the forum , plenty help here

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Thanks for the welcome, nannyb x

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nannyb, When I was younger (!!!), I used to love Barbra Streisand. she used to sing one song that stuck in my mind: Never give up, no, never give up!

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