Recently diagnosed with Copd help needed - British Lung Foun...

British Lung Foundation
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Recently diagnosed with Copd help needed

GayleM
GayleM
β€’53 Replies

Hi My name is Gayle I have just been diagnosed ( last Friday) with moderate COPD I'm very upset any advice please.

53 Replies
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O2Trees

Hi Gayle, welcome :) Of course you are upset, it's horrid to get the diagnosis. I was also diagnosed at the moderate stage - and here I am 16 years later actually breathing better than I was back then. Copd can be managed, its not a death sentence.

My advice would be to exercise as much as you are able, to eat a good diet and to stay away from infection. Re exercise I don't know whether your GP has mentioned pulmonary rehabilitation to you - PR is a course of exercises and education specifically tailored to the needs of people with copd. It is evidence based to improve exercise functionality and quality of life. Most areas in the UK - do you live here? - run these courses so do ask your GP about them. Loads of us here have done the course and pretty much everyone speaks very highly of the difference it has made in their lives.

If you have any medical questions you can call the BLF helpline - 03000 030 555 office hours - and talk them over with the BLF's very knowledgeable nurses, but do also ask us whatever occurs to you. We've all been through the shock of diagnosis and know what you are going through. Take care :)

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Hidden
Hidden
in reply to O2Trees

Hi I was going to reply but O2 has said all I wanted to say and given you excellent advice. I will add not to google indiscriminantly as you will go from copd to dying in a few clicks! Stick to recognised sites such as this one and the NHS.

Stay with us as we are the ones who live with lung disease and we all help and support each other. Oh and nice to meet you. x

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GayleM
GayleM
in reply to O2Trees

Thank you so much for replying I've been extremely upset over the weekend and just felt like I had been given a death sentence. I'm only 49yrs old.

I'm going to make an appt with Gp and ask about the rehabilitation exercise groups.Thanks for all your advice.I really appreciate it.

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O2Trees
O2Trees
in reply to GayleM

You're welcome Gayle :)

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Hidden
Hidden
in reply to GayleM

Hi Gayle, I am a relative newbie still coming to terms with having COPD so can't offer advice. it does feel like a death sentence and is so frightening. Thank goodness there are so many positive people here who continue living! At the moment I am just trying to exercise and look after myself. Try to keep calm and put your energy into activity rather than panicking like I did. Best wishes.

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Hidden
Hidden
in reply to Hidden

That was very good advice Ginger :D You know more than you think. x

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Bjayr123
Bjayr123
in reply to GayleM

its not a death sentence its just a slow you down sentence i have bad copd but i cope as we all do we just learn to live with it and it might not get any worse than it is did you smoke and ave you gave it up ?

that is a massive plus if you dont smoke stay away from bonfires and try not to passive smoke you will be fine we all are (im just slower now)

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GayleM
GayleM
in reply to Bjayr123

Sorry to hear you have bad COPD and thanks for sending me a message.Yes I did smoke but am stopping have started Champix to help me and determined to do it and going to start exercising as much as possible.Its just a big wake up call to change your lifestyle asap.

I hope you are managing x

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lync11
lync11
in reply to GayleM

I felt exactly the way you do when I was diagnosed but am now really positive for the future.

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Hidden
Hidden

What do you need to know

Life can still be lived to the full

Copd is not a death sentence if you lissen to your gp .and there is a lot on here will give you all the advice you need .

So the first thing you got to do and the must thing you got to do if you smoke is STOP NOW .AND YOU WILL SEE A DIFFRANCE AFTER A FEW WEEKS

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O2Trees
O2Trees
in reply to Hidden

Yes, good point David, and to stay away from second hand smoke and other pollution like car exhaust.

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GayleM
GayleM
in reply to Hidden

I do smoke and I'm definately giving up have reduced amount and I'm going to use patches.

I was only told by nurse last Friday and to be honest just need to know how I can stop it progressing. I know I HAVE to stop smoking just hope this will help it.

Thank you for your help

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Pam1952
Pam1952
in reply to GayleM

Hi there. I agree with David. Everyone is different, but I was smoking for 50 years. Good luck with it. XXX

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Scud
Scud
in reply to GayleM

Hi Gayle welcome I have copd was diagnosed about 30 yrs ago so you can see it's not a death sentence however like you I smoked and did not give up straight away (how stupid of me) when I did give up after roughly 3 months I felt so much better, I thought I was cured so started smoking again,within weeks I was back to square one so it proves that you MUST stop I know it's not easy but you will slow the process of it down. I would not say thank you for a cigarette now. You will get lots of help and support on here so good luck and please give it your best shot.

Love Sue

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jimmy1c
jimmy1c
in reply to GayleM

Hi stoping smoking will definitely help, I know it can be difficult but I shudder to think what I would be like if I hadn't stopped

Jimmy1c

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Hidden
Hidden
in reply to GayleM

Hi there is also a quit site on HU and they are excellent for helping you to stop smoking. x

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O2Trees

Me again! Get a flu jab Gayle, and a pneumonia jab, if you haven't already. Also talk to your GP or respiratory nurse about getting a rescue pack - this is a prescription of an antibiotic and steroids to keep at home in case you go down with a chest infection out of surgery hours - they should explain how to know when to start these but you can also ask us. Don't want to weigh you down with too much information right now :)

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GayleM
GayleM
in reply to O2Trees

I cant believe how helpful you have all been really really grateful. Thank you so much...!Feeling a bit better now.

I haven't had flu jabs ever and didn't know about rescue packs very helpful. (I had 3 chest infections last year and really needed the steroids and antibiotics.)

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locklevel

Welcome Gayle, you have come to the right place. Everybody here is very kind and helpful. I too was diagnosed with moderate copd and was initally very scared and frightened. Trying to read up on copd on the internet one night and clicked on a link that led me here. I've never looked back. I spent many a night reading posts, learning and getting solace from doing so. O2Trees has replied with some pretty good information.

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Hidden
Hidden

Yes you can do most of it if you live in the country side but in towns and citys you can not get away from car fumes and polition

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Jessy11

A very warm welcome Gayle. It must have been a shock to get your diagnosis of moderate Copd but you've come to the right place for advice.

We're a friendly group who will help you with your questions as much as we're able.

I see you've had lots of helpful advice from other members.

The most important one is to STOP smoking. It's the one thing which will benefit you greatly. Very hard to do but there's plenty of help available & it's not impossible to achieve.

Take care, join in & enjoy the forum πŸ’

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katieoxo60

Hello Gayle , think you made the right decision coming to this forum. Welcome and good luck with giving up the ciggies, I used patches but it is a long time ago since I quit. Take the diagnosis serious and use it as an incentive to stop smoking, I am sure you will succeed as you have already taken the first steps. Look forward to talking again soon

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Moyz

Get vaping

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sassy59

Morning Gayle and welcome. It's not nice to be diagnosed with COPD but you are in the right place for helpful advice and caring comments.

You will live a full life with lots of care e.g. eating well, exercise and keeping as well as possible.

Take care xxxx

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GayleM

So overwhelmed with all your support and kindness I'm so pleased I've found this forum.I know you all understand the shock and fear of being first diagnosed and I know it's a big wake up call to look after myself .

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Gw123
Gw123
in reply to GayleM

Hi gayle m

I am a copd sufferer in the moderate category as well, and I can assure you copd is not a death sentence. Yes , to a certain extent you have to change your life style and one thing is for sure smoking is a taboo subject.

I was a smoker, and believe it or not I had quit smoking for 10 years and then I was diagnosed,

But now at 68 I go to the local sports centre everyday and use the treadmill for 1and a quarter hours at a moderate pace and I am also attending my local weight Watchers meeting and trying to lose weight , which obviously helps with the breathing so my advice to you is don,t let it get you down and get exercising as much as possible

Good luck and keep on posting you will receive a huge amount of moral support on this site.

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GayleM
GayleM
in reply to Gw123

Gw123

Thanks for your message it's nice to hear reassuring and supportive responses. Well done for all the exercise you are doing that's great! I'm planning to increase mine aswell I went last week to a low impact exercise class and plan to start Pilates aswell. I have a dog which makes me go for walks...

I've just started Champix (a week ago)and hoping these will help me give up smoking ..I think this week they start working so I'm hoping they will help me finally quit

Nice to hear from you

Keep in touch

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Hidden
Hidden

Good morning Gayle, and a warm welcome to the Group.

I can't add anything to the sound advice given by O2Trees.

I was diagnosed moderate in 2013. Certainly not a problem for me. Approach it in the right way and all will be well, I promise. Come here for help and advice and friendship.

All the best to you, and please don't worry.

:-)

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Dedalus

Hello and welcome Gayle.

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Nanny1086

Totally agree with 02trees comments ,

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diesel12

Hi and welcome, I too was diagnosed as moderate about a year ago and went through everything you are dealing with at the moment. Just follow what the others said exercise, eat healthily and especially, stop smoking. I use an ecig an the doctor and nurse are ok with this. I still work full time and live a fairly normal life which is not what I expected when I was diagnosed, but after I came on this site it has changed my outlook and I am quite positive about the future. xx

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GayleM

Thanks everyone I've made appt to see GP today will update you later .Sonpleased I've found this group you are all so supportive πŸ‘

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casper99

Hi Gayle and welcome. You sound much more positive after finding this great forum.

O2Trees and Cough posts said it all. Scud, has astounded me with her revelation along with all the other posts, have made me feel very proud to be part of this forum family.

Stay with us, you haven't met our resident Joke teller Tam, yet or the cheeky Mr M. This is not the end of your world. xx

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Dragonmum

Welcome Gayle, you've come to the right place - stop worrying, like riding a rocking horse, gets you nowhere. Get all the info you can from your GP (not Google) but above all quit the ciggies; so much easier with the advent of the e-cig. I switched 7 years ago this month and enjoy all the pleasures of smoking withou the crud that kills and that's after smoking a pack a day for 60+ years!

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Wez1

Hi Gayle, i too am still getting over the shock of having copd and am in my 40's.

Dont google is the best advice, I googled and gave myself a death sentence until my hubby got through to me!

Give yourself time to come to terms with it x

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GayleM

Hi Everyone,

Went to gps today having flu and pneumonia jabs tomorrow ( Going to see if nurse can refer me to pulmonary rehab course)and I've made an appt fo see stop smoking advisor at pharmacy tomorrow .

This is all thanks to the wonderful advice and support from you all on here much appreciated.

Unsure whether to go with patches or try champix ?! Have used patches before and found them ok.

I know people use the vapor e cigs and have tried this but I'm scared of long term damage of using e cigs on lungs .

Any suggestions?

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Azure_Sky
Azure_Sky
in reply to GayleM

I would advise against e-cigs personally. You are still inhaling vapour and glycerol. I tried lozenges and chewing gum. Waste of time. The most successful and safest method in my opinion is nicotine patches.

A word of warning, you may find the first month hard. There will be more coughing at first, to clear your lungs and you may feel a bit peculiar. That is the withdrawal symptoms. You may also be wanting sweets which cause weight gain.

I would get rid of the smoking habit before worrying about your figure. Ordinary chewing gum can help. Someone I know gave up by eating aniseed balls by the jar full. Whatever works best for you I say. Best of luck to you.

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Chriskho
Chriskho
in reply to Azure_Sky

HI AS

Did you try vaping? I am a little wary as it seems to make my lungs feel 'rough' worried that I am getting the (oil)/ glycerol in my lungs? yet many people recommend it?

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Azure_Sky
Azure_Sky
in reply to Chriskho

I did but hated it. My husband vaped for five years but he still got lung cancer. I am suspicious of the glycol which is some sort of oily stuff. The only things I ever found to be any use were nicorette inhalators. Patches can help, but the lozenges and chewing gum on the NHS are a waste of time. The trouble is, smoking is a habit, vaping continues the habit of holding something and inhaling. I don't really know what works, apart from cold turkey or cutting down gradually. There are so many opinions on the subject. The time may come, when you have to go on oxygen, in which case, there will be no choice at all, as you cannot smoke near oxygen, without going up in a ball of flame.

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Nottobad
Nottobad
in reply to Chriskho

I have always been told that vaping is better for you as the vape dosnt go into your lungs. I stopped smoking 24 months ago usin an e cig. And now you can get them on the NHS.

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silverhair01983

Hi and welcome I used champix to stop smoking and I found it was the the best way for me I tried everything else but nothing worked for me and I smoked for 40years hope it helps

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GayleM

Thank you πŸ‘

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Sherry44

You have received such good advice on this site Gayle that I have nothing to add except welcome. Try not too worry too much. I think we all reacted as you did when first diagnosed, but most of us have lived many years with COPD and are still going strong. Good luck!

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GayleM
GayleM
in reply to Sherry44

Thank you I certainly have had good advice has helped me a lot to overcome the initial shock.

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Fionafish

Hi Gayle, I'm new to the site too and when I first heard my diagnosis of emphysema many years ago (over the phone) I asked how long I had left - very shocked and ashamed too as felt I had caused it myself through smoking. The best advice from the doctors was to exercise, which I try to do for 45 minutes each day, but this is such an informative and supportive site that I have learnt more in a few weeks than I did in years. Good luck!

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GayleM
GayleM
in reply to Fionafish

Hi Fiona,

I felt exactly the same was in total shock and felt I'd been given a death sentence.People on here are making me realise you can live with this condition. I feel the same ashamed and even embarrassed to tell friends as I've caused it( only told family and a close friend).

I am going to start exercising more and I'm walking briskly now with the dog and even went to a low impact Pilates class I just want to fight this.

So pleased I've found this group!

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Fionafish
Fionafish
in reply to GayleM

I'm glad I discovered this site too - and I still haven't told many people (I was diagnosed maybe eight years or so ago). Like you I feel ashamed and embarrassed, even now sometimes - not a good feeling. One thing we need to watch out for is busy roads - pollution is bad news but especially for us (I have considered getting a filter mask for walking by busy roads). Anyway good for you on the exercise - sometimes I think it is such a pain but once I have done it I always feel better :)

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Riadee

Hi I am Maria, I was diagnosed yesterday with moderate COPD. I am 64. I had been diagnosed in the past with COPD maybe about 10 year ago, I was entered into a trial, only to be told that I was the healthiest COPD patient they had ever seen and the research team doubted that I even had the condition. Anyway here I am with moderate COPD, I still don't feel that I have symptoms although, I cannot walk uphill without getting out of breath, (I attributed that to having Atrial Fibliration) I also wake up in the middle of the night with a coughing fit that lasts about 15 minutes. (Not every night though, maybe about 3 to 4 times a week). I stopped smoking over 20 year ago. I am obviously having to take this diagnosis seriously and I am glad to have found this website, looks like there is a lot of help to be had here.

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GayleM
GayleM
in reply to Riadee

Hi Maria,

Nice to hear from you. I'm sorry you have been given a diagnosis of moderate Copd like myself but from what I've heard we can live a normal life just need to be careful . I had a few chest infections last year and now I've had a flu jab and going to have a pneumonia one aswell.

The advice I'm getting is to obviously stop smoking and I'm on the champix tablets ( a week now) so in a week I hope to be stopped!Then exercise and eating healthily .Ive asked to be referred to pulmonary rehab course but waiting to see if I can go as the nurse said it was for more severe copd sufferers. I would like to go on it though as the more information you have the more you can try and help the condition.

Nice to hear from you and keep in touch 😊

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Chriskho
Chriskho
in reply to GayleM

Im 59 been diagnose COPD 2 year, even though the Drs knew I had COPD a few years ago but I was not told it was that. I have gradually progressed from my original results .I use a small home treadmill 6minutes a day and do the BLF exercises which takes around 20 mins 3 times a week, Stopped Smoking (big one) and just generally try to move around more. I do not need to loose weight and have never had to use my blue inhaler which was all I had until the past few month. I have Fostair now which has improved my FEV1 10%. I am moderate COPD around 60 -63% but otherwise quiet active and healthy work as a nurse 2 days a week in a busy out patients dept. I was devastated when I first found out and frightened myself silly reading stuff online. I hope to IMPROVE my FEV1 more by doing much of the same. Not that much (as many do but works for me!) Love to hear how you get on. Dont beat yourself up re the ciggies yo will find a way. Take Care Of You Chris

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GayleM
GayleM
in reply to Chriskho

Hi Chris,

Thank you for your really interesting message pleased you are doing well. I've only been given the blue inhaler which I'm not really needing to use. What is the fostair?It sounds good!

I've stopped smoking only day 3 but strangely enough I feel my breathing is better and not coughing as much .Im using champix which is helping but trying to fight the cravings!Im pleased 😁 I'm doing it.

What were your original results if you don't mind me asking?

You sound like you have really been trying to improve your condition I'm the same I'm determined to get healthier now it was a big wake up call and like you I was devastated until I joined here and got such good advice..

Take care keep posting 😊

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Chriskho
Chriskho
in reply to GayleM

I'm at 68% now was 56% when diagnosed went down to around 49% before being prescribed fostair inhaler twice daily. How you doing?

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