Newly diagnosed Moderate COPD & Panicking

Hi

I have recently been diagnosed with mod COPD my fev1 is 56% (was last Sept although no one told me until now!) I had a breathing test after a bad chest infection. I suspect this is nearer severe copd than moderate?

After looking into it online I am devastated and really stressing out. I have a breathing test on 24th July.

I am in shock as I do not particularly suffer with a bad chest or breathing difficulties. May get out of breath after climbing steep hills but presumed most people my age do. I am 58, slim, mostly underweight at 8st. I had a heart attack out of the blue last October (16 days after I quit smoking). I put that down to excess stress at the time.

I was given a blue, salbutamol inhaler after my bad chest infection but have never felt the need to use it.

I am so worried about my future i.e how long before things get bad. I have 2 disabled grown up kids to care for. I have always thought of myself as pretty fit, healthy diet etc (apart from the smoking of course).

Considering the stage of my COPD how can I expect things to develop? Can you live actively for a few years? Reach old age?. I would appreciate some realistic advice and experiences as I have a lot to consider esp other people. I read an article online stating that 4 years of life is normal for COPD!!!??? VERY FRIGHTENING.

I am eager to do anything to keep well but afraid to try certain meds/ vitamins in case they interact with my heart meds. Have had to come off statins due to side effects i.e frozen shoulders at present. Good advice deeply valued.

Take Care x

13 Replies

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  • Hi I completely understand how you feel as it takes a while for the shock to subside when you are diagnosed with a chronic illness such as COPD. Please don't google indiscriminately though as you will scare yourself silly. 4 years is nonsense.

    You sound like you are doing all the right things and leading a healthy life which is great so carry on with that. If you have 56% lung function you are doing very well not to have to use your inhaler. I have 78% lung function and need my symbicort and blue ventolin inhaler.

    I am 61 and was diagnosed around 5 years ago and my lung function has actually improved a bit since then. By doing the right things you can hold it steady for many years and although it is a progressive disease it doesn't generally progress that quickly.

    To put it into perspective you can survive with a lung function as low as 6%, and there are many on here much lower than you still with good quality of life, albeit a bit slower. You have many good years ahead of you yet.

    One of the main things to get your head around is to learn to take your lungs very seriously, so if your symptoms worsen at all make sure you seek medical help asap as infections can damage your lungs further.

    Stay with us here. Between us all we know everything about lung problems and will be happy to help and support you all we can. Ok?

    Now have a glass of wine and relax :) x

  • hi I have very severe copd and emphysema my fev1 is 18%. although ive know for a few years I had suspect copd, it wasn't until December last year the day after my 55th birthday that I found out the extent. I was same as you at first was in shock not knowing what could happen and you get a lot good advice on here. I wouldn't take notice of anything you read online as that just scare life out you. if you smoke stop smoking, try get on pulmonary rehab course, ive done that and it does help. I still manage work part time, and do as normal as I can just at a slower pace, its about learning what you can do.

    tam

  • Hi - please don't panic and don't google! My husband was diagnosed about 12 years ago and now has lung function of 27% - BUT we still have a great quality of life and at 67 he is still working full time. He does use oxygen sometimes when he needs it but is pretty good. Forget the four years!

    There are lots of things you can do to keep yourself well which will help you slow down the disease and you have done the most important thing you have given up smoking. The next is to keep fit - daft as it sounds when you are feeling breathless. There is a fantastic course - pulmonary rehab twice a week for 6/8 weeks which helps you to get fitter with monitored exercise and helps you manage/understand your condition. You need a referral from the Doctor but it might be worth asking about it. If not google pulmonary rehab exercises on YouTube.

    The best of luck with lots of love TAD xxx

  • I'm a newbie n just reading thru these n you have answered questions also. Thank you so much for your input. I do want to know though if you don't mind some people say if you use inhalers and oxygen it was get you dependent on it and you're better off not using anything doesn't really make sense but just kind of wondering if you heard anything about this thanks in advance have a wonderful day

  • I don't agree I think you do more damage by not getting the treatment. My husband denied his symptoms for a long time and I personally think he could have slowed down the progression even more if he had used the inhalers. As for oxygen you are prescribed it when your oxygen levels are lower than they should be and the oxygen is used to protect your organs. Good luck xxx

  • Hi I completely agree with TADAW. If you are prescribed treatment to help manage your condition then there is nothing to be gained by not using them.

    No one gets prescribed oxygen without it being needed. If your sats (oxygen level) are regularly below 88 then you need it to stop organ failure, which if levels drop at times to below 84 could damage them. x

  • Hi Chriskho and welcome to the board. Everyone goes through the same fear on diagnosis and most have done the dreaded googling that's full of doom and gloom.

    It's understandable your worried about it having to look after you disabled children. but, from what I've gathered, after much searching, is that most people seem to live a normal lifespan, which is why it is classed more as a chronic disease, but with different degrees of ill health, depending on things like lifestyle.

    Cough, has pretty much said all that you need to know. you sound pretty fit, especially if your not even having to use your inhaler, that's brilliant.

    The most important thing is stopping smoking, which you have done. Get a yearly flu jab, a pneumonia jab, Keep fit, eat well and stay away from people with bad colds ect....

    Stay with us, you'll meet loads of more knowledgeable people than me and you will soon know more about this disease than you'll ever learn from your doctor. I did. xx

  • Nice to meet you all and hope everyone is ok esp in this heat!

    Thank you so much for the positive and encouraging comments. I have actually just spoken to a GP at my surgery. I went to see him to check out some chest pain, all was ok , probably angina due to the panicking re copd.

    He was also reassuring. He told me that although my lungs are functioning at 56% if I stay off the cigs, take regular exercise, try not to get ill i.e colds My lungs should deteriorate at the rate of anyone else my age!! He said only use inhaler if breathless.

    We do not have access to pulmonary rehab where I live but there is a breath easy group nearby that meet monthly. I am away for the July one but I will be sure to attend the next one. I have also sent for an exercise book from BLF. Would like to know more re breathing exercise.

    Thanks again

    Chris

  • Hi and welcome Chris, your introduction so mirrors mine, though my fev1 is 43%. Im coming up to 60, and packed the dreaded ciggies in 14 months ago. Then nearly 2 weeks ago was told I had copd. Like you I googled, and googled and cried and cried. Then I found this forum and with advice, reassurance and the banter, life style changes, a positive outlook, thing aren't nearly so scary. Theres a breathing exercise video on the 'abbreviations page' that i do at least once a day and 5 mins on an exercise bike, and the difference in such a short time is immense. My biggest fear at the moment is oxygen level, though Im keeping an eye on that with an oximeter. Good luck and stick around its a lovely place and I look forward to catching you again xx

    Ps, my nurse told me at 8st 2 i could do with a few extra pounds, I'm now 8st 7 and i think ill be happy with that, I too was always under weight, till i saw a dietician last year with unrelated probes xx

  • Hi Jude and thanks for the advice. How do I find the exercise video please. Also would love to know how you managed to put weight on. I have a job keeping what I have (daren't say it out loud). Im looking to get a treadmill.

    Take Care, gentle hugs

  • This (hopefully is the link on youtube,https://www.youtube.com/watch?v=VR7QnSnHmBU

    But if u go to my communities, then british lung foundation, then all posts on the right hand side you will see 'abbreviations and links, scroll down and the video is there, can't manage to link to it from here.

    As for the weight, little and often, no proccessed food, make sure u have breakfast even if its a slice of toast ( i rarely get hungry) small snack at dinner time, then a cooked meal at tea time. eat between meals all high calorie stuff, i have a sweet tooth so now i have no bother. scone with jam and cream, small bounty bar, pasta with cheese, everything i eat has cheese on, peanut butter sarnies with a slice of cheese, be adventurous. i was told to eat at least 5 times a day, even if it was only a custard cream i classed that as one, i take honey and lemon in hot water with my morning cuppa and I've also just started drinking 1.8 ltrs of water and what a difference to my skin. xx

  • Why panic? You had the condition before diagnosis and now that you have been diagnosed you should get the monitoring, medications and help to live as near normal life as possible. You may have to modify a few things you do but other than that, sit back and wait for old age. I don't, of course, mean sit back do nothing....exercise is important so keep going up the steep hills. Any breathlessness just shows you have exercised your lungs....and I 'm sure after your heart problems, exercise was part of that new regime. So exercise, good food, good friends.....what more can you ask for. Don't believe everything you read. I was diagnosed moderate 25 years ago and have only recently given up baccy. I'm now severe but since the loss of the back, I've crept down to border line severe.

    As for the clash of drugs...as long as you use the same chemists for all your medications, their little machine will flash up RED if they try to give you something that will affect other drugs....if you are unsure, ask the pharmacist and they will reassure you.

    If you want to read reliable information, check it's source first. BLF and other chest specialist hospitals have a lot of information available and that should be enough for most questions.

    Just think that the stages of looking after your health now, are only reasonable changes that any sensible person would be adopting as they move from their 50's into their 60's and beyond.

    Best until last. DO NOT sit around worrying and thinking about it because before long you will be a chronic invalid, totally reliant on other people. Grab life by the horns and hang on for a ride of your lifetime.....chill out and relax.

  • Thanks so much, brill!

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