What happens at End stage COPD ???

Is it End stage 4 -

To be told I'm being placed on permanent daily Antiotics/steroids and be told docs are sorting daily home care / support. etc and have to sort a plan for the kids ??

Went to the docs and as am having endless clusters of exacerbation which are kicking off every two weeks.. The doc said she is concerned....

15 Replies

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  • i have been having exacerbations every 2-3 weeks since xmas - i don't know if its end stage but my doctor has now put me on 1 x doxycycline per day as a way of preventing any more flare ups. Unfortunately due to the amount of steroids i have been taken i have also got bigger around my chin,ankles and belly, doctor told me this was due to the steroids.

  • I am on the doxycycline also and I have been having them since April... and have already put on a stone with steroids pffttt

  • Yep them damn steroids did you know they also shrink things aswell OjO but i aint going into that, I have been on them for 8 weeks now gone from 14st to 15+ in that time.Was told by doc that he wanted me to have daily visits but i refused him i dont feel that bad to warrant that care yet hope im not on the way to having end stage i wish you all the best ladies we can grow old and fat and have shrinking parts together

  • Only the men have shrinking parts hee hee.............

    Just to say Gary1969 and please don't shout at me as I believe it is a sore subject. Many people say that steroids make you put on weight but my dads specialist and members of the Breathe Easy meeting he went to all said that its not true. Steroids increase your appetite so you should decrease your meal size and/or watch what you consume. Mum did that with dad and noticed he was eating alot more than prior to steroids so she reduced his portion size and cooked more healthily. Thankfully he has not gained weight so in his case I believe what they said.

  • Thanks Tanyamarie the dragons just read this not only cant i breathe i am going to starve to death now lol

  • you make me laugh, sorry if i dobbed you in then!!!!! But at least now you just shrink the belly and not the lower matter lol!

  • Hi Aligoddard, on the blf website there is a section where you can check out different illnesses and the different stages to encounter. I checked it out to see about my dad and it is very informative. Also, if you call them you can ask them and they will discuss it with you.

    Hope you get some answers swn xx

  • Once your fev1 is below about 16% it isn't taken anymore. But some can live for years even then, while others succumb easily. There are also several false bad episodes when it appears the end is here, only to recover again. I guess I have a lot to look forward to. NOT. Although my FEV is about 25 at the moment so not quite there. A short film will explain this quite well. This is the link. vimeo.com/39258619

  • aww Thank you xxxx

    I wish you all the luck

  • Hi

    Why don't you give the Helpline a call on 03000 030 555 - I'm sure one of the nurse can explain everything to you.

    Thanks

    Mark

  • Thank you mark for the info. :-)

    They called me this morning and gave me some fantastic advice and even a poss new underlying cause behind my now complex situation that being Bronchiectasis... Which she wants me to mention to the consultant in a fotnight to enable them to get to the bottom of why at 40 I am in this mess...

    They Are So very helpful and has cleared up so much of the confusion for me and although yes am still very ill and at present living on antibiotics/steroids permenently etc at least I feel there may be some hope of halting the endless fortnightly exacerbations as getting so drained by them...

    Again Many thanks to you All...

    Have a Fab weekend and All Stay Well

    Hugs

    Ali xxx

  • I know the feeling. You are not alone. For me, there seems no end. I will sign off as I'm getting depressed. Tomorrow is another day.

  • Ali dear, I'm really sorry to hear of your troubles. Try bronchiectasis.info/ there's a great deal of specific information on there for people with bronchiectasis, and the members are just as supportive as here. I have bronchiectasis too and it is possible to get on a regime of drugs and daily physiotherapy which will halt those constant exacerbations you mention. If you do have bronchiectasis, you need referral to a specialist unit as general respiratory physicians simply do not know enough about this condition. If you're within travelling distance of London I strongly suggest you get referred to Royal Brompton Hospital, where both your lung AND heart problems can be treated. It's one of the world's leading heart & lung hospitals so you can be sure of the very best care. As your problems are so complex, you need the brainiest doctors around! I am better now than when first diagnosed, thanks to RBH. They accept referrals from other hospital consultants or your gp can also refer you.

    love, FF x

  • ps Glenfield Hospital in Leicester is also great for bronchiectasis, if London is too much of a trek for you

  • Hiya FF

    Aww thanks so much for this info that's brill much appreciated hunny.. Bloody hell you are having a right time aren't you .....:-(

    Hugs xxxx

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