40 with end stage emphysema how bad will this get

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I have end stage emphysema fev1 24% on oxygen a ton of medication apart from being quite slim I look healthy just don't feel it & need to know what to expect &!how to deal with people

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16 Replies

  • Posted

    Hi Georgina,

    I had my last lung functionality test 2 years ago and it was on Fev1 29%. I am 52 years old and just recently went on O2 therapy as well. I as going on the 30th June for another lung functionality test but I just got out of hospital with Pneumonia so I suspect my results will be worse.

    All I can say is to ensure you stay away from irritants and smoke. I don't look sickly so I understand how you feel with this hanging over your head.

    Best of luck.

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    • Posted

      Thank you I've been on oxygen for a few years but am not finding any benefit from it I'm usually very upbeat & positive but am worn out can I ask what have your consultants said is the best course of treatment for you & what to expect

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    • Posted

      Hi blade the only treatment I am offered now is a double lung transplant unfortunately I am underweight because of my illness & am finding it very hard to put on weight I really wish there was more but I've done coils , valves unfortunately for me these did not make a difference

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    • Posted

      Hi blade65 just wanted to check in & see how things are with you after your pneumonia as I know your lung function is similar to mine & you also don't find oxygen much help

      Can I ask what treatment you are on & anything you would recommend

      Hope your well

      Georgina

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  • Posted

    Hi oxygen is given to help support your other organs.  Sometimes it can also help you breathe a bit better but not always. 

    As an 'invisible' disease often people don't understand how it affects you.  I heard a lovely story the other day.  An acquaintance drove his car into the disabled bay (he had a blue badge).  When he got out several people started having a go at him parking there.  He said hold on and reached back to put his oxygen on.  Exit embarrassed people scurrying off as fast as they could. 

     

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    • Posted

      This happens on a regular basis to me it doesn't help that I look younger than I am I have also pulled up next to cars in a disabled bay with no badge & waited for them to return, asking if it was worth taking time off my already shortened life so they could park nearer a shop that I clearly can't walk to without assistance I need to bring a camera for there expressions usually they pretend not to see or hear me

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  • Posted

    Hi Georgina

    Maybe give the British Lung Foundation helpline a call or contact the lung foundation in the country you are currently living, they will be able to give you a few pointers of the help you can access if you haven't already done so.

    I would say, pace yourself as you need to, exercise a little with breaks each day or twice a day.  even just managing 1 minute am and 1 minute pm to start every hour or something along those lines.

    I expect you know this already  

    --  Avoid wherever possibly people who may be infection with a cold or the flu.  

    --  Act on quickly any suspected infection

    --  Don't hesitate to contact the 111 service or emergency

    Dealing with people it would depend what it is you want to achieve in dealings. Generally perhaps just write down what you wish to achieve, what you wish to communicate, anticipate what people may say then you can think about what answer you are happy or comfortable to give or not give.

    For past 18 months I have been thinking I need to go minimalistic and make my will in readiness but I have still not done either.  Its difficult facing up to I find.

    I am wishing you all the help and support you need at this time and in the future.

    With Love

    V

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    • Posted

      Thank you for your reply just abit confused as to how I'm supposed to proceed I have quite a slim chance of transplant due to being small & my blood group just feel left up in the air as no more treatment will help & am on morphine etc for pain am I supposed to just wait and see ?

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    • Posted

      Update I am having a meeting to discuss my transplant as they can't see any other option,

      I passed my heart test (only organ that seems to want to cooperate) but have malnutrition bmi 16 eating all I can & 3-6 protein shakes a day any suggestions?

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    • Posted

      for transplant you have to be fit for the op.  the medical professionals will advise on what is required.  You should have further guidance concerning how to achieve this.  Check again with specialist you discussed transplant with you and with your GP,  Perhaps the specialist has already written to your GP with recommendations.  Check both.

      NHS choices has a page on underweight adults, malnutrition and lung transplant preparation.

      Protein shakes and normal meals will help with weight gain.

      British Lung Foundation helpline may be offer you some additional help and support in this matter.

      I would say eat full fat butter, full fat milk and yoghurt, eat icecream chocolate as well as plenty of fresh fruit and vegetables, if you eat meat, have beef, lamb dishes at least once a week, have fish and chips, chicken anything that takes your fancy.  the British lung foundation will have information on diet and maintaining weight as well as transplant information.  

      If you are not in UK make contact with the equivalent lung advisory in the country you reside.

      Best wishes V

       

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    • Posted

      Hi vee

      I am under a nutritionist & am doing everything suggested

      To be honest my gps don't really have any knowledge on my condition as I have alpha 1 antitipisin & no treatment or operations have made any difference to the rapid progression of the disease but have to say I am very fortunate to be under the royal brompton & my consultant & specialist are fantastic

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    • Posted

      That's great georgina so glad you are with the royal brompton and so glad you have fab consultant and specialist and great you are being guided by the nutritionist, sounds like you have pretty much everything in place. 

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    • Posted

      So sorry your treatment ad ops have not made any difference so far.

      If you need to I am sure you would be able to access a counselling service at the hospital to help you through any difficult periods, perhaps you have access to this service already.

      hope you find you start to gain weight and feel tonnes better, ready for any operation you may be considering.

      Best wishes V

       

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    • Posted

      Thank you for the positive encouragement appointment tomorrow so hopefully can start getting back on track
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