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New member with newly diagnosed COPD and hoping to introduce myslef and hoping to gain information and smoking cessation support.

Tezhar profile image
31 Replies

Hi,

My name is Teresa and I was diagnosed with moderate COPD in February. I also have asthma which I have had from a little girl. I have a print out with loads of digits on it that I do not understand. But the one thing I do understand is that my lungs are 74 years old whilst I am only 44. :-( I was informed three years ago after spending the whole of Christmas week in hosptial that if I do not stop smoking I will get COPD. I had a spirometry test back then and my lungs were 63 years old but had not crossed the line to COPD. I ignored their warning and here I am with COPD and an increased lung age of 11 years in just three years!! I am having yet another half hearted attempt at stopping smoking as we speak.

I think the hardest thing is to accept that you need to make some lifestyle changes. Packing up smoking being the hardest. I am still not connecting with the fact that I am killing/suffocating myslef slowly.

Any advice on making these changes and accepting the diagonsis are welcome. Infact any input at all would be much appreciated.

I am a mother of five. 11 years being the youngest. If I stop smoking can I prevent myslef from ending up with an oxygen mask? Can I prevent another hospital stay? Can I improve my lungs in anyway at all? My doctor said if I stopped smoking then my lungs would only age a year at a time, like my body. So next year they will be 75 although I will be 45 and their is nothing I can do about it other than try to exercise and stop smoking to make sure I have healthy 75 year old lungs. :-(

What exercise is recommended? And can I get my prescriptions free as it's a chronic disease?

Thanks for your time.

Teresa.

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Tezhar profile image
Tezhar
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31 Replies

Hi Tezhar, I care for my husband who has severe COPD and lung function of 25% having said that he still works full time, we still have a great life just a bit slower than most!

I had written this post a while ago - and thought it might be helpful......

There have been a number of posts from very frightened people having just been diagnosed. I have been answering posts and putting in my thoughts when I think they could help. But it occurred to me that the most worrying thing about COPD is the chronic element. Usually we go to the Doctor and get a tablet which makes a vast improvement or cure (simplified but you get the gist!) - COPD is a different beast altogether.

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 your 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

AND

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!

Take good care, TAD xx

PS RIng the BLF helpline - click on the red balloon in the corner, they have some fantastic leaflets

kimmy59 profile image
kimmy59

Agree with everything TADAW said.

And welcome to the forum.

Kim xxxxxx

WeymouthJohn profile image
WeymouthJohn

I'm convinced that for every individual there is a way to stop smoking which will be successful.

I tried all sorts including hypnotism and patches. The way which eventually enabled me to succeed was a book, of all things - no high tech, no miracle drugs, no artificial aids.

The book is called "The Easyway to Stop Smoking" and is by Allen Carr. You'll find it on Amazon or probably on the shelf of any major book shop.

The basic idea is simple. You have to get into the frame of mind which says that you are NOT "giving up" anything. Yes, you are stopping doing something but "giving up" means that you are losing out on something valuable. When you were young I'm sure you occasionally tried to run into the road in front of oncoming traffic. Your parents will have shouted "Stop doing that", not "Give up doing that". Spot the difference!

You are losing nothing. You are gaining lots.

What Allen Carr does is take you through a journey to changing your attitude. Some of it seems a bit silly but it does matter.

It isn't a miracle cure. I succeeded on the third effort.

However the punch line is taking your last cigarette and knowing that it's true.

Mine was at 8.20 p.m. on 26th August 1996. It's that specific. From fifty a day to nil.

Believe me, you can do it.

I hope you'll soon be joining the Non Smokers.

(This is a repeat of something I wrote some months ago - but it's still true.)

Good luck

John

Ed-b profile image
Ed-b

Hello Teresa.....

I have lungs that are much more than your 75 yrs.. I also was a smoker and I knew that I needed to stop from way,way back. I knew what it could do to me. I was given probably 5 yrs. to live if I carried on. I heard all the things that you heard, and knew people who died.

All the facts were believable and the advice/warnings were frightening, so much so that I had to light a cigarette. Every time I lit a cigarette I worried about the risk. ( You do that, don't you? ) and I decided every time that I would have to give them up "as soon as the best time arrived", which would be when there was no stress/ when the weather got better/ when people stopped saying they gave up smoking 120 a day "just like that" and its never bothered them since/ when they stop saying "once you get over the first 3 days its not so bad".

Once I managed 4 months without smoking, but I felt like lighting up a lot of that time. Then I simply felt so well that I persuaded myself that smoking could not have tasted so bad. And lit one (had kept some for no sensible reason). That was it.

A smokers brain does not work like anyone elses.

In recent years I knew (but would not admit to myself) that things were not right and I needed to stop. The other part of the brain agreed, but did not want to.

I felt generally not well just before last Christmas and had to let my real brain take over at last: I could not smoke, not even a few puffs. My other brain had the idea that if / when a cigarette made me feel better, then I was better. This must have been an inner child speaking! I developed a more active cough (the odd cough had been there for a while), a runny nose and lost all energy. I had to try sleeping sitting up because I could not breathe. NOT 'I felt breathless' ----- I could go through all the normal breathing movements we normally do without thinking. NO AIR went in. When/if this happens to you then PANIC because there is nothing else you will be able to do, although this will only make things worse. I was told by a mountaineer that this happens at high altitude, but is ok if you come back down. There is no come back down for me, or for you soon by the sound of it.

I have been treated since all that and I do not smoke --dare not-- and I feel years younger.

I take no credit for stopping smoking (WeymouthJohn is right you Stop smoking, not give it up. My childish brain is now happy to know I will probably start again on my 96th birthday, when it wont really matter, so I have not Given Up anything.

I am 77+ by luck, not judgement: The grandchildren are old enough now to be people I can talk with sensibly and I can afford to have things.

Stopping smoking is agonising, it takes a few months to feel the benefit. Don't wait to panic and frighten everyone as well. Use patches,or whatever helps. I have a puff now and again on an electronic pipe thing just to give my hands and face something to do. I do not inhale the vapour even though some say it is theoretically safe ..... I am eating too much/ now the weather seems better I am taking my new camera out for walks. You are lucky, kids give an excuse to excercise !! And you have a lot of new friends here who know what it takes, I'm sure. Just do it, suffer it, bitch a lot. My lungs are older than yours and I have to treat the real worry, for which there is no treatment--AGE. Look at this link for sensible talk : its free:

copd-international.com/COPD...

carlam131 profile image
carlam131

i am making an attempt again to stop smoking. been at it for the last couple of weeks, and for the best part seem to be succeeding.

last time i tried, it was because they told me i had lung cancer. i stopped, and then had a middle lobe resection and when the biopsy came back they told me not lung cancer, but sarcoidosis

my brain said wooooooo hooooooo, now i can smoke again!!

i am still not getting my logic, but then i am not convinced a smokers brain can do subtle or even unsubtle logic!!!!

this time i am attempting because a couple of weeks ago i ended up in hospital with acute shortness of breath following a chest infection that has lasted since december. docs then told me i had moderate copd. am absolutely convinced they have the diagnosis wrong, and will certainly dispute that until i see the evidence and my sarcoidosis doctor tells me that he agrees

anyway, in my head i know that the reasons for stopping smoking are valid - better health, more energy, better appitite, better quality of life etc etc, and i think that there is significant evidence to prove that lung function will stop the decline when smoking stops

but this is not a logical thing, if it was then we would read the facts and stop immediately.

my head tells me that i need to stop, but my emotions tell me that i can still get away with sneeky puffs.

i think i need to book an appointment with a psychiatrist, because clearly i have a death wish and some obscure mental affliction

:(

anyway, here is to all of us making that effort and hope that we can all walk? run? jog? crawl? to that winning line!!

love

carlam

Ed-b profile image
Ed-b

Hi Carlam,

You are on the right tracks ..... we smokers do have a different brain : the nicotine seems to give us an Alien in there. Of course we don't believe we have copd or any other nasty lung thing because if we stopped smoking the nicotine Alien would shrivel up and it wont allow that !. Report back next week so that we (the ones still giving up) can either have a laugh or feel really jealous, or something ! !

Ed-b profile image
Ed-b

Hello Teresa..

How are things going now? Prescription costs ----- ask in the surgery: don't think its free for COPD but there are schemes to help with costs, like long term repeat prescriptions (kind of discount I think) if you are not receiving benefits. Otherwise, move to Wales ! Cheers

Jake364 profile image
Jake364

Hi I have moderate asthma and low lung function I don't know if you can get prescriptions for free I'm trying to as well. I know how you feel I've had asthma since 4 and now 37

Tezhar profile image
Tezhar

Well thank u everyone for your replies. I hve read through everyone one of them carefully and gratefully. Taking on all views and advice.

Tezhar profile image
Tezhar

Hi Jake, I know u can't get free prescriptions for asthma. But please take care of your asthma and do your best to avoid COPD.

helingmic profile image
helingmic

Dear Tezhar, not only for your sake, but for your children, you really have to have a go at stopping smoking.I lived with my parents until I was 19. My father was a smoker. When I was 40 yr old, I started to show signs of bronchiectasis. They cannot find the reason why I have this disease, but I'm pretty sure that it was the passive smoking that did it!

Lots of people here took the same steps that you are about to take. Take a deep breath (it helps too!) and decide to give yourself a longer life and a beautiful gift to your kids. You can do it. and tell us of your progress!

You can go to your GP for a quitting course, your consultant and yoru nurse especially would encourage and support you.

We'll do the same! Have courage to start quitting!

Tezhar profile image
Tezhar in reply to helingmic

Hi Helingmic, following on from what you just said their. I was brought up passive smoking as my foster father smoked like a trouper indoors. Also, we had a cat that I was allergic too. The cat hair used to give me itchy eyes and a wheezy chest. Their was the odd occasion that I would get a cold/flu but was layed up on the settee finding it difficult to breath. Back then they called it catarrh. Today I recognise it as asthma. It wasn't until I was 19 that I was diagnosed and thought it was 'normal' to react to colds in this way. Also we had crittle windows and lots of damp/mildew/mold up the walls. Their was ice inside the windows in winter. Could all these childhood factors also contribute to my COPD? X

helingmic profile image
helingmic in reply to Tezhar

In one word, yes! Unfortunately. But it doesn't mean this should dominate your life. With good care from consultant, respiratory nurse team, and yourself doing exercises and stopping smoking, you can improve no end. It shows that you have to take charge of your body, mind and soul!

Tezhar profile image
Tezhar in reply to helingmic

Consultant? Respirity nurse? I hve none of these. Just a spirometry test at docs and no follow on stuff at all! Just been told I hve moderate COPD with aged 74 lungs and that's it. No follow ups of any sort hve been offerd to me?? Should they hve been then? Hmmm? X

helingmic profile image
helingmic in reply to Tezhar

You have a right with your condition to an assessment by a consultant at least! Just ask your Gp to be referred to them. He should do the job. It's your health (not his!!! and if he were in your condition he would certainly refer himself!!!)

Sokrackers profile image
Sokrackers in reply to Tezhar

Hi Tezhar, I am 48 and diagnosed last Thursday - what a shocker it was. In order to try and pinpoint what was going on or any triggers I bought an oxyometer off amazon about £10 also bought my own spirometer again from amazon similar price. Now I can see the improvement in my breathing when ever I want to whether good or bad - for me it is important to link my health feeling with my body's reactions. I is a time for readjustment - a healthier lifestyle. Take care

Tezhar profile image
Tezhar in reply to helingmic

Oh. N thanks for the smoking support and your reply. It's a week today and I'd just love a cigarrette right now!! Lol xx

Dragonmum profile image
Dragonmum

A half-hearted attempt at stopping smoking is useless - unless you are really determined then nothing you do will work. I have asthma and COPD and I smoked for 60+ years - at my last emergency admission I was told it was pack it in or else! There are many methods around but a hardened smoker is much like a recovering alcoholic - we seldom totally recover - one puff and we're off again. Even after quit periods of 2years I always relapsed. I decided that rather than make a big thing of quitting I would simply switch to the e-cig; that was more than 4 years ago and I can honestly say I would be sick if I lit a cigarette now. My asthma nurse said at my last visit "Whatever you're doing just keep doing it" my results were brilliant. Meds have been cut to just 2 puffs of iprotropium before bed and I've had no chest infections, anti-b's or steroids in the 4 years I've been vaping. Not for everyone maybe, but it worked for me - painlessly! You have 5 children - please stop smoking and you'll live to see you grandchildren.

I was diagnosed with Emphysema in my 30s, but like a fool carried on smoking and classed them as my best friend..They went every where with me,I gave up years ago because I simply couldn't smoke any more.literally..If my lungs could take it I would still be smoking today as I practically ate the things..NOW I cant walk,suffer extreme exacerbations,gone from being happy and active to depressed and sad.I am on too many drugs to mention including Morphine and now I despise the dreaded things..Hospital told me there was nothing more they can do for me,My living room looks like a hospital ward,with drugs nebuliser,oxygen tank..I plead with all you smokers ,try your best to give up, its not just the breathlessness but all the other symptoms with it that drag you down..

I had a letter today to say I can have a "lung reduction operation which will give me a better quality of life,it wont help me live longer but at least I will be able to BREATHE.They class me as young at 56, who am I to argue lol..Good luck to you all in trying to give up,its hard and if you knew what level 4 gold stage Emphysema feels like you would give up believe me..x

Ed-b profile image
Ed-b in reply to

Well worth the saying ........ it will help someone: if only more smokers could/would read this...... Best wishes with the op.

Tezhar profile image
Tezhar in reply to

I really feel for you. It must be awful. I wish you all the best and thank you for sharing your story to help me and others like me. I can't even begin to imagine what it feels like. A week in hospital where I was fighting for breath because of an infection was very scarey. I can't imagine what it's like feeling like this every day.

in reply to Tezhar

Its really scary Tezhar,My lungs go in spasm like concrete,feels as if I am drowning,there is nothing the hospital can do but stick me on the nebs n watch and wait for it to pass..I had a bad attack yesterday and med myself..I have been told by paramedics to call anytime and not let it get too low..Its getting embarrassing being admitted all the time but thats all I can do is wait for the letter to say I have a date for my op..Thanks for the reply and good luck..Here to chat anytime..Laura x

Tezhar profile image
Tezhar in reply to

Sounds horrific! Lungs feeling like concrete! N you must be anxious about your lung op too!!

Thank you..x

James48 profile image
James48

Interesting posts from the many folk who have responded about giving up smoking. In my own case I tried Zyban, Acupuncture, those pretend plastic cigarettes, patches and a couple of attempts at will power. As soon as I was diagnosed with COPD, I went home, had one last cigarette and stopped. Amazing how that diagnosis did the trick for someone who'd smoked from age 18 to 55!

It wasn't easy though and I munched lots of sweets for a couple weeks while telling myself I wasn't going to let my mind have control over me. Good luck to all who need to quit. I could rant at why they're even available to buy but that's another subject altogether. Jim

abbisnan profile image
abbisnan

I really really wish you well. I managed to pack up smoking after 45 years at anything from 20- 60 a day sometimes.

I sometimes miss it when I am stressed but oh boy I never realised I smelled so bad!!!!!

Would have been dead by now if I hadn't knocked it on the head.

Tezhar profile image
Tezhar

I must say the support on here is amazing. And I hope I can support others as they have me.

I want to wish each and every one of you good luck in trying to knock the cigs on the head..Its really hard I know from past experiences, and just like sirjames I tried every thing and then I just went cold turkey and thought sod em I am going to win here..You may have got me ,but I have a second chance for a little while at least..Keep trying and don't give up please,its horrible being at this stage and very frightening!!!god bless you all xx

Tezhar profile image
Tezhar

Just a quick update that I thought I'd posted yesterday. My husband and I have now packed up for a whole month. I've been using stage 1 patches and the e cig. My husband just the e cig. We r really positive that we can stay stopped. My husband does not hve any health problems and has packed up to support me. Which i think must be harder than packing up for yourself. I feel an improvement of asthma/COPD symptoms. Not sure where asthma ends n COPD starts tbh. But think it would improve more if I stopped using the e cig. Thanks everyone for your support. N good luck everyone who's also stopping smoking.

tooyoungtodie profile image
tooyoungtodie

Hi theresa,

I am also new here. I am 48 years old, and was recently diagnosed with copd.

Over the last 3 years I had 9 chest infections and kept smoking the whole time. I finally ended up in the hospital and I could not breathe. I finally went to a pulmonary doctor, and was told I have mild to moderate emphysema. I am really beating myself up, and thinking if I would have stopped smoking this wouldn't have happened to me.

I have quit smoking now, and I am scared.

Please stop smoking now! If you dont stop, it will progress alot faster! We both have a chance to live, but

if keep smoking, we will die. It is now a matter of life and death, no joke!

I chew nicotine gum, I know its not good, but much betterthan smoking! Also, go do some exercise!

Keep in touch,

carol xx

mikefa profile image
mikefa

Well you can't get your fags free ,I stopped with the help of a nurse at my local health centre.She planned stopping over a 4 month period with the patches and a slow withdrawal.The patches not the fags she set a date when i would stop .. the 2nd best thing i have done in my life the first marrying for a 2nd time 9 years ago.. I am 82 and slowly dropping to bits but if I had smoked the last 11 years i would not be here .

No sympathy its hard but well worth it. Think of the money boot a cruise and pay for it in fag money

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