Newly diagnosed with copd: Hi all, just... - British Lung Foun...

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Newly diagnosed with copd

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Hi all, just looking for some advice please....i have been a smoker for over 40 years, with a nasty cough and in past year started getting breathless, stopped smoking with champix 10 weeks, anyway after about 6 weeks not smoking cough completely gone, not getting breathless, but just had a spiro test and result came back copd severe, being sent for xray thursday, booked onto rehab exercise course end oct, but not been given any meds or info so am feeling completly out of my depth and in past week started smoking again and chest feels tight, trying to make another appt with smoking cessation people as so disappointed with myself and totally overwhelmed!!!

18 Replies
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Welcome Suki01, you’ve had a huge shock so little wonder you turned to the cigarettes again.

See how the x-ray goes and try and stop smoking.

Phone BLF helpline during office hours on 05000 030 555. Good luck to you. Xxxx

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Thank you, i thought because cough etc had gone, smoking was just an irritant....was seen by practice nurse who gave me the spiro test and booked xray etc, but not spoken to or heard from my doctor, so nothing has been explained to me??? So trying to find info on this and what to expect in the future, scary stuff!!

lizbeech
lizbeech in reply to Hidden

Early days Suli01 just the same stopping smoking will be the bes thing you can do. This forum will support you all the way. Good luck!

Hello Suki101 It is a terrible shock but read the posts on this site. Many many people have copd and are leading long active lifes. I think that its a disgrace that people like you and I who consider themselves healthy are told, you have copd without any doctors consultation or advice. I really understand what you are going through but stay strong you are as well today as yesterday and will continue to enjoy life. Best wishes

evaparodi
evaparodi in reply to rossie1942

I know exactly how you are feeling. I had a bronchoscopy and the doctor just wrote on the result photo that I had EDAC (excessive dynamic airway collapse). He just told me to keep the weight down, and to Google it. He said I didn't need a follow up appt. I m appalled! I went to another doctor and he said there was nothing that can be done. I would go to another doctor, and get someone to listen to you. Good luck 😄

Hi suki,I was diagnosed COPD 4 years ago by my practice nurse after spir o and chest xray,a locum doctor said it wasn't possible as I have never smoked,anyway i went with the nurse's decision,joined this forum and have taken loads of very good advice from very savvy,experienced people who have spent years dealing with all the associated problems.

I am currently in the process of losing weight and exercising more,I've lost over 2 stone and feel tons better plus my spir o has improved, I think the obvious thing for you is to stop smoking,easier said than done but just listen to the folks in here you won't go wrong.

Good luck

Bob J.

Suki01

Hi sorry to hear you have gone back on the cigs, bad move they have already caused you enough damage please do not make it worse, get off them again quickly.

Unfortunately most on this forum are ex smokers and given what we all know now would never have gone near them.

If you are unhappy with the apparent lack of medication for your ailment go for another 2nd opinion, if needs be privately. You should not feel overwhelmed and if you do need meds you are entitled to have them. The people on here have various meds but see what your 2nd opinion throws up. You could even see another GP within the same practice.

IKeith

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Thank you all for your kind, encouraging, and informative comments. I am am honest, think i knew this was coming, but have been in denial and trying to make excuses in my head. But a question please, i am 56, how long before this disease debilitates you?? I need to make the most of my health the way it is at the moment so a guide line would be helpfull

greatauntali
greatauntali in reply to Hidden

I'm afraid no one can answer that question because everyone is different. My advice is to " seize the day " and do whatever it is you want to do because it may be too late when you have time, money or whatever. Do it now - make the most of your health the way it is now and try again with stopping smoking.

Good luck. x

I am 76 and I have asthma all my life. Told that I had copd by a nurse with no follow-up in June this year and she suggested that I should have been diagnosed years ago. However in my view I can do everything that I want. Walk for 20 miles a day. Swim garden although I can no longer run for a bus and can't dig for long. So you can look forward to another fun filled 20 years at least.

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Thank you Rossie, that is comforting to know. I need to get fitter, i am small and slim but don't really excercise as i jump in car for work and am lazy with my time. I have signed up for the rehab excercise program but that doesn't start until end oc t and going back to smoking cessation clinic when they can get my appt. So onwards and upwards..

Just a word of caution, I had two spriometry test at the doctors surgery by a practise nurse. I have recently contacted a second opinion from a consultant who is arranging a comprehensive range of lung functions test as I think he is suspicious that the test performed at the doctors doesn’t ring true. In his words, the results do not add up and he finds them slightly confusing. I never asked any further andtrust him to interpret the results when carried out by people who perform these test daily within a hospital environment.

rossie1942
rossie1942 in reply to Fergusov

Hi Fergusov thats interesting. The nurse who told me that I had copd said that she could not understand how I could be so well but did not suggest any further tests. Do you mind telling me if you are going private as opposed to NHS. Good luck with tests

Fergusov
Fergusov in reply to rossie1942

Hi Rossie1942,yes I went private for the second opinion as I too, feel ok and can’t understand the results being so poor. I amexpecting some damage to my lungs due to me having smoked but the nurse/GP frightened me to death when they informedmy of my test results. I felt very confused.I’m due to have the lung function tests this coming week so we shall see if they give the same results. !!

rossie1942
rossie1942 in reply to Fergusov

Thanks fergusov all the best. I am going to go private. Blow the money 😂

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Thank you Furgusov. I don't think i need to seek a second opinion, my fev1 etc. Is 43 so I do have copd. I have just had a chest xray and waiting to see a doctor who can explain the spirotest and tell me the results in full and work out a treatment plan for the future. At the moment i feel good in myself but do get breathless when walking too fast. I am not used to excercise but keep busy in my daily activities and job, however i do need to get fitter and push myself. It is scary but i am determined to give it my best as i will not go down without a fight. Also glad to say back off the ciggs, had a blip for a week and smoked 20 in that time, and boy did my chest know it!!!

Carry On the Good Work Hun, You sound like a Positive person and Know your own COPD. FEV1 at 43% is low and you go to work and manage to do more, Good on You. I am 32% , Retired, but I do Exercise every day ( I wear a FITBIT)and stopped smoking almost 4 years ago, It makes a Huge Difference, allowing us to live longer. had Valves, On TX List, But Life is Good and I stay Positive. have a Great weekend Hun. Love n Hugs. xxxxx

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Thank you Hacienda, hope you have a great weekend too...yes i am a positive person and have so much to live for, i have had plenty of life knocks along the way, suffer from severe psoriasis since my teens and beaten cancer twice. I am very young at heart and i think that is what keeps my going, love being a big kid although i did fall and broke my wrist in Feb attempting a torvel and dean routine at the ice rink, trying to recapture my youth lol...plan to go back shortly, but with wrist guards....great aerobic excercise for the lungs, i am not a gym bunny and hate the thought of those places. Starting a little project of converting a van into a campervan for next year, so hopefully it will encourage me to get outside and explore a bit more. Love and light xx

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