Newly diagnosed advice please

Hi all , my name is Kathy and i am 56 years of age and recently diagnosed with COPD. I caught a virus that placed me in bed for two days and later started to really wheeze and cough not being able to get my breath. Two trips to hospital and 5 days admission , finally after antibiotics, 15 nebs and steroids could breath and go home . Straight away I started to give up smoking , have had the odd one , to be honest , yet now going for more help to kick the habit completely . I also have to go to a clinic for Lung function tests.

Since having all treatments , i feel well again , get slightly out of breath on exerting myself , but nothing like how it was in the beginning . My problem seems to be at night , and can wake almost chocking because of Mucus build up in my throat. Its quite scary and as well a new thing ..... Because i feel so well again , I am finding it quite hard to actually understand the disease . I have read so much about it, also seem so many videos on You Tube and wonder if I am diagnosed correctly. I am having my flue jab soon as well Pneumonia jab , more because of of colds and flues etc... I am aware it is a progressive disease , yet for now feel well . IS THIS NORMAL TO THE DISEASE ?

18 Replies

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  • hello and welcome !..........

    well its a lot to get ur head around isn't it?

    id try extra hard to stop the smoking and id ask the doc to help as there is so many things that are good !...........

    you tube is good for lots of things but a lot is from the USA so its not always good for us Brits lol.....

    the chocking at night is horrid and the reflux acid is not a help with it at all.

    im sure the doc will sort you out with the right tablets and the jags plus maybe with other things you may not have thought of like depression which goes hand in hand with copd in most cases.

    i hope you enjoy meeting the rest of the gang and i wish you all the best...

    Roger.

    x

  • Hello Kathy,

    welcome to the forum-the first thing you must do is STOP SMOKING-I know its hard but it does slow the disease down-I was diagnosed in August 2010 after 30 years working in the construction industry the dust got to me ( I smoked the odd cigar )-doctor was not happy and he said to me if you do not stop immediately you will die before your time- never smoked a cigar since- I have too much to lose,like 5 beautiful grandchildren- I want to see them grow up.

    so please understand its only advice not lecturing-you must weigh up the things you value in life and kick the habit completely and yes there are days when I feel there is nothing wrong with me then other days when I am indescribably so ill.

    I am sure the lovely people on this site will soon be on to give you further advice and help in managing this disease-best of luck.

  • Thank you :) Its so warming to know i am not alone with this disease ... I agree with the smoking bit and will do all i can to stop.... I am getting help next week and will continue to break the habit..... HOW CAN THEY PLACE A LIFE SPAN on CODP ? Can any one advice ..... ??? Does it just get progressively worse ??? or Is it the attacks that kill ??? I am a person that faces things head on and will do all i can to learn of this and help others too xx

  • If you stop smoking it stops it getting worse ( there is some disagreement about this but I can't see how the emphysema part of it would ) if you keep healthy. The next best thing is exercise. As far as I know there is no life span on COPD. People on here have had it for 20 years or more.

  • Thank you Puffermagicdragon . The life span part comes from reading a blog and degrees on the disease . I have yet to have my lung damaged accessed, and am more trying to stay positive , rather then take on board all i have read of the disease as that is scary xx Yes the Cigs are going , as i am 56 and no way want to die yet ... x Thank you for your reply

  • Most call me Puff on here. It saves typing. Attitude does help. I know I have lung damage but I get annoyed sometimes rather than depressed when I get short of breath doing something a bit strenuous. I still push myself to do things as best I can without overdoing it. COPD doesn't rule me. I rule it ! :)

  • :) I love that positivity you have and need that more than anything Puff lol :( yes your right it is rather long winded hahahahhah and puffed out saying it lol joking :) Thank you so much xx

  • " Long winded " ! :)

    Being able to joke about it is a good road to travel on. :)

  • Roger , :) You re right with the depression bit, as that is what i have been diagnosed with of the past as well anxiety which now i realize actually went hand in hand with panic breathing . Its because i am not like this all the time , its hard to get my head around and STAN , like you i too have grandchildren, plus love life so much too , and do not want my life to end because i could not give up smoking. I am so determined not too, again , its because i feel well now , and the hardest part is ACCEPTANCE of the disease

  • Hi Blessings. Welcome to the site, I hope you find it useful. You re right about the 'acceptance'. I was diagnosed five months ago and I am only now accepting the illness. Until now I have tried to do and be exactly the same as before. I could hear what the doctors were saying but couldn't apply it to me. Like lots of people on here, I 've had to make life style changes. I officially finished work last week but I am still pacing my time and the day as if I am at work!! I have taken my watch off and hidden it - to stop me clock watching! it's crazy. I am on tablets for depression and sometimes it's difficult to know if I feel poorly because of the COPD or because of the depression - it appears that they both feed into each other. The more accepting I am of the condition, the easier life is becoming even though my physical health is slowly deteriorating. Keep positive - it's not all gloom and doom. x

  • Thank you so much Terri Rose . I agree about the depression and COPD. I have had depression for about two years now as well anxiety. Now because i am diagnosed with COPD i believe that they all run hand in hand with each other. My Attacks ( s known as anxiety then by Drs ) are part of my breathlessness on what I call a real bad day... What new is the Wheezing along with the cough which is so frustrating :( I have all my meds at hand as well inhalers, which i did not have before . Its scary as now i feel well , acceptance only comes when it happens again and do not fancy the thought of fighting for my breath ,as well I am aware of what is to come , and what i cant get my head around is when WILL it come again ?

    May i ask , do you get any benefit help ??? I have been told i may need that later down the line .. OHHH GOSH , all seems like doom and gloom, but as so trying to stay positive about the whole thing and only to grateful for your reply xx

    Love Kathy x

  • YouTube and a lot of websites out there can be very misleading. Get the right information and you should not have nightmares.

    I often point to a very useful booklet, that you can access online, aimed at healthcare staff and published by NHS Sheffield - sheffield.nhs.uk/respirator...

    It explains lots of things in pretty simple terms, and I wish more doctors and medical centre staff would read it as many of them don't have much idea about COPD.

    How many items of medicine have you been prescribed ? If it's more than 4 items in 3 months then look at pre-pay prescription certificates - nhs.uk/NHSEngland/Healthcos...

    If you're not sure about something then by all means ask. There's the BLF helpline if you need advice or reassurance. Above all, look after yourself and you should be fine for a long time to come.

  • Again I am so grateful , and totally agree with you about getting the right Info. My Dr was not helpful at all , which did not help me as this is a new diagnoses. He didnt even offer me help with quitting smoking and now getting that from our pharmacy . I think just about every piece of information i have from the net ends in doom and gloom , and more so scared the pants off me with You tube , with credits at the end of people dying :( after the videos where made . I know my end , and like many its not nice , yet could die of something else . BUT for now i am living and at the door of COPD which has been quite a scary insight to this disease x

  • There had been a big push with the NHS during October to have people quit smoking. I got some info and support from them which helped me quit, try smokefree.nhs.uk/ or check your local area for a Smokefree group. I got the Champix tablets on prescription through them.

    Your doctor should refer you to a specialist for proper diagnosis if they are not knowledgeable enough. You may need some advice from an expert so call the BLF helpline and speak to one of their team so you know what to say to your doctor to get this moved forward and give you some peace of mind.

    They should also be able to point you to a local Breathe Easy group who will know who the respiratory nurses and other experts are in the area and perhaps be able to get you some further help.

  • :0 xx Hugs to you , amazing help thank you xxxxxxx

  • When I first got diagnosed ( 18 months ago ) my doctor gave me inhalers and that was about it. I couldn't walk more than a few yards without having to rest. I felt down about it. This went on for months. I phoned the BLF helpline and they said I probably had a chest infection. I told my doctor who didn't even get the stethoscope out to check my chest ! I ended up going to A&E it got so bad. They gave me an xray and the usual tests. They also gave me Prednisolone. Two hours later I walked out of there feeling like I could run a marathon. All that anguish for a dose of medicine! I immediately changed my doctor. Within 2 days the new doctor had arranged for me to visit a pulmonary consultant.at the hospital. Now I am getting the right meds I feel pretty damn good considering ! That is probably why I don't let it get me down as I know how bad I used to be.

    You should push your doctor to see a consultant.

  • Thanks again Puff :) I totally agree . Its a new Diagnosis for me and i was scared. When i went to my Dr , he didnt even show signs of concern , I actually had to ask him to give me flue injections etc, as well i showed him the E cig that i got to replace a real cig, he just looked at me and said " If that whats you want have them" With no offer of help from the smoking team at the surgery. I feel i am on the right meds as i feel well again, but still needed his reassurance. I think i will be looking at a lot of changes xxxxx

  • Hi, there is a lot of good advice on this site and I thoroughly agree with Puff. Doctors are what they say on the tin.... GP's..... general practitioners which means they know a bit about some things but don't necessarily have all the answers. We're going through the mill at the moment with my dad's GP, we have been told that his conditions have been mis managed from the word go. Dad has Emphasymia, (I'm sure I've spelt that wrong!!) (which is bunged under the heading COPD), Pneumoconiosis and Chronic Bronchitis. He's 75 and been ok until this Feb just gone when a chest infection set it all off. What we have found in our area is pharmacists who think they are god. I appreciate their knowledge and skills but I was spoken to like I was an idiot yesterday and that, coupled with the inefficiency of the doctor's (which is next door) has led to me insisting that something is done to help my dad (I was very polite). It's the luck of the draw with doctors etc but this site has been amazing and full of good advice. The main thing is to accept your limitations as your condition will be up and down depending on the time of year/what meds you are taking/ whether you are able to stop smoking etc. One of the main things to be aware of is depression with these illnesses as that can make things worse.

    Keep plodding and keep your chin up.

    Kind regards,

    Jane (kenneth74)

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