Advice needed

Hi ,I have just found out that I have emphysema .I have been struggleing since I found out as I lost my dad 2 years ago who had emphysema as well . I feeling alone and scared and have been worrying about everything .I suffer from really bad asthma as well and being a single parent caring for 2 children with autism ,it is really hard to keep on top of things, The doctor said if I lose weight my breathing will improve and I would not feel so tried all the time .Any advice to cope with this I would be grateful thankyou x

10 Replies

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  • Ah Janey, it is so scary when we are first diagnosed, this time last year I really thought my life was over, but now I'm adjusting, looking after myself a bit, but most important I'm feeling a little more hopeful, I'm sure in time you will as well, I'm sorry this has come after your dad dying, must be so painful, come onto this site often, there are loads of lovely supportive people here, I was wondering if your local social services could find some support for you with your children? Or are you in touch with other parents of children with autism? It is true that losing weight will help, I know that can be hard, maybe eat off a smaller plate, that works for me in cutting down x x x meadow

  • Hello Janeyangel and welcome.

    Firstly your not alone anymore we have a wonderful community, here for each other with a vast array of illnesses and experience.

    My first piece of advice is to ring the helpline tomorrow they are wonderful and will tell you how to get the support you need, secondly don't google you'll frighten yourself.

    I have severe Emphysema myself and was diagnosed last year, it was and can still be very hard to cope, but I was referred to an Pulmonary Rehab course that changed everything.

    I know you are probably very frightened but trust me you've come to the right place, if your worried or just need a chat come on here.

    Kim xxxx

  • 03000 030 555 - a very important number, it's the British Lung Foundation helpline which is open 10-6 M-F and the staff are brilliant at chatting and helping you. Give them a call, tell them I sent you :) , and they will help put your mind at rest. Ask them to send you their info pack of leaflets and a DVD to explain more.

    Feel free to come on here and ask fellow sufferers about things if you like, there are those who know about exercise, medical issues, benefits, caring for yourself, almost anything - there's was a discussion on here earlier about Tena products !

    Losing weight, stopping smoking, adapting your workplace, there are lots of things to help improve your condition and stabilise things. With the right help and medication you will be with us for some time yet ;)

  • Welcome janeyangel :-) xx

  • Hi

    Like you I have Emphysema, I was diagnosed 5 years ago. My Dad also died of Emphysema when I was 24, so when the GP told me I had emphysema I thought I would die like my Dad within 2 years, but its not like that, things are so much better now. I too am trying to lose weight, I put 2 stone on when I gave up smoking 5 years ago, been trying to lose it for the last year, its very easy to put it on, mind you I am sitting here eating chocolate, lol. Another good thing to do is exercise, that really helps with breathing, also try and keep positive and like Kim said, don't google, I did that and it made me very depressed, take care

  • Hello, My husband was diagnosed about 9 years ago. Please try not to be scared - he has severe COPD but still manages to work full time and deal with our children! Sometimes are harder than others especially if he gets an exacerbation (symptoms get worse) usually if he gets a cold - but other than that life is just a bit slower than it used to be!

    My advise would be to ring the helpline - they have an information pack they could send out to you which has some great advise. Try to be proactive and find out what is available - eg. My husband was referred to a pulmonary rehab course - two hours twice a week for 8 or 12 weeks which helped him to exercise and have him lots of useful information.

    Take good care and try to look after yourself. with love TAD xx

    PS this site is so useful, lots of people in similar situations that can help you - I have found it invaluable

  • Welcome janeyangel - excellent advice above - if you need any specific question answering just come back and someone will be able to point you in the right direction. We are an excellent bunch of people who have experience of most of the stuff associated with rubbish lungs :) xx

  • Hello janeyangel. I was told I have very severe emphysema over 6 years ago. I was absolutely terrified and convinced I would die within a short time. This was NOT helped by my Internet searches! My advice would be to relax, ring the BLF for accurate information, leaflets, etc. and use this site for advice and support to see you through. PS I have no intention of dying any time soon! x

  • Thankyou everyone for your support and advice .I feel so much better and more positive about things . The helpline was great help ,so I will no longer scare myself with google xx

  • Hello there Janeyange.l

    The others have given you plenty of advice so I will just put my arm round you and give you a squeeze.

    Love from Bobby xxx

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