Prognosis?

Good morning, I have received a letter from my GP stating that I have some emphasyma...I was not even aware that I have a lung problem! Through a night of insomnia - Googling this condition, it would seem the prognosis is 2 -4 years life expectancy! While every bodies experience is unique, can anyone direct me to realistic figures/ provide me with some optimism? I would like to be well informed before I tell my family. Thankyou in advance

28 Replies

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  • The exwife of a friend of mine has had it for many many years! She gets bad at this time of year due to pollons though.

  • Thank You very much, and Thankyou for taking the time to reply. That has cheered me up a bit....I had my suspicions about the sites and their statistics...they seem very unhelpful. I

  • Googling is the worst thing you can ever do, especially some of the American sites. I was diagnosed over 20 years ago, been on oxygen for 10 years and I am still here, with no intention whatsoever of going anywhere soon. Proper diet, gentle exercise and generally looking after myself seems to be the answer for me. So ignore the doomsayers, check out Pulmonary Rehab (general exercises and information giving) with GP and get yourself on the list.

  • Thankyou....it is scary! i want to prepare things ASAP for my family and new partner...

  • Ah.... Certainly does X....Thankyou ;) a positive attitude is essential xx

  • What basis has your prognosis been based? Have you had a full spirometry,x rays and CT scan. It's only when these have been carried out that the level of COPD/Emphasyma can be established. I was first diagnosed in 2005 and am still here, As others have said exercise and good diet are paramount. Pulmonary rehabilitation gives you a lot of information as well as exercises

  • Thankyou. I have just a CT scan.

  • Hi Floppyb and Welcome to our community. It is not a good idea to Google for information as there is a lot of rubbish out there. Emphysema is a progressive disease but can be managed if you look after yourself. My wife has had COPD/Emphysema for over 12 years and leads a full life, be it a bit slower.

    You have to be carefull if you get any infections and make sure you get them treated as soon as possible before they get a good hold. A lot of people have an Emergency Pack (Antibiotics and Steroids) so they can start taking them as soon as they realise they have an infection without having to wait until they can get an appointment with their Doctor. Exercise and a good diet also play a part in managing your condition.

    From what you say about you weren't aware of having a lung condition, it sounds like you maybe in the very early stages so try not to worry, there are lots of things you can do to help yourself.

    Regards. John

  • Thankyou very much John...I have always been prone to colds so I shall take your advice about getting a med pack in place x

  • Good Morning - what an awful night you must have had. Dont google it will drive you insane. I care for my husband who has had COPD for over 12 years - he is still here and we have a great quality of life. At 67 he is still working full time! I would suggest that you ring the BLF helpline first - 03000 030 555. The staff will be able to reassure you and be able to advise you what treatment you should be receiving. When my husband was diagnosed we were just given an inhaler and that was that!

    My advise would be to find as much as you can from trusted sources - like the BLF who also have some very good leaflets available. As frightening as it sounds there are lots of treatments available and support - though in your case it looks as if you will have to be asking for it. I have found that as long as you seem to be coping then the doctors are happy to leave you on your own.

    There are lifestyle choices that can slow down the progression - stopping smoking is essential. Take a deep breath and stay positive. Lots of love xxx

  • Thankyou so much. Every positive message is a plus X

  • Hi nice to meet you though I am sad that you have had to join us lungies. If you have some emphysema and no symptoms the chances are you are mild. I was diagnosed mild at 56 and now at 62 I am still mild. The doctor told me not to worry too much as something else will get me first ie old age! So unless you want to live to 110....

    As you have found out Dr Google is full of dire predictions and doom and gloom, so it's best to stick to recognised sites like this one and the NHS (if you are in the UK). x

  • Thankyou Coughalot2. I am 55 and hope we'll still be chatting when I'm 62 x

  • You are very welcome Floppy. I hope neither of us of will need to be here that long, but if we do then I am sure we will still be chatting then. x

  • Hello and welcome here. I do hope you're feeling less anxious after these replies. Think you need to go back to your GP for some proper testing and you'll be in a better position to know where you are and what's happening. 2 - 4 years prognosis? Do you live on a busy road?! be well. Sue x

  • Yes, unfortunately I live close to one of the worst polluted areas of our town!

  • Actually, I was thinking of the chances of being run over by a bus with a prognosis of two years. x

  • Hahaha! No chance...traffic is usually at sftand still! ;)

  • Churning out diesel fumes no doubt?!

  • Yes....I'll to do some research and make some drastic changes. A lot of rapeseed oil is grown in the countryside areound here...which I imagine is agravating too...it certainly seems to increase hay fever. So perhaps I'll invest in a dinghy!

  • Hi Floppy.Im new here but going through the same as you. Iam not knowledable enough about all this but I wish you well and come and talk whenever you feel like it, I found people are very frienfly and helpful round here.

  • Thankyou so much X. Feeling a bit blitzed at the moment, but hopefully there is plenty to feel positive about. I hope have been diagnosed early,

    Rebecca

  • Hi I've had emphysema for well over 20 years and still have a great life. Don't Google it will scare the pants off you. If you want to know about your condition ask here on this forum we are all people with lung disease. We can give you lots of support and info. Take care Barbs x

  • Thank you so much Barbara. This forum is fantastic x

  • Your very welcome keep in touch and ask all your questions someone on here is sure to have an answer. Take care Barbs x

  • Not much to add to the great info you'be been given above - would just like to welcome you to our lovely group.

  • Thankyou Dedalus... I have been reading a lot of posts on here, to try to get to grips with things, yours among them, in particular in relationship to cannabis oil.

    I look forward to getting to know everyone better, and Thankyou so much for putting the effort in to respond to us newbies.

    One question I have, which I think I know the answer to really...is that once we have this condition, is it inevitable that it well get worse? - I'm sure this depends at least to some extent on individuals, but now that so many of you have reassured me that life goes on ( and on), and not to worry but just enjoy, it is of course practical to prepare for some probable challenges in advance X

  • Floppyb ".. was not even aware that I have a lung problem!"

    Why were they doing a CT scan?

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