update

saw my consultant today I finally got some answers from him as you know I was given 6 months by my doctor she described me as end stage the reply I got from him was what defines end stage. he showed me my scan from a year ago pointed to the emphysema and told me the lung should be grey colour mine was black .he told me I don't have much lung left he also showed me the pulmonary fibrosis which is very wide spread.he stopped seratide 500 and azythromicine as they are not working.my lung function is only 22%. he is sending me for pulmonary rehab.and oxygen as I now desperately need it. I said to him if the rehab doesn't kill me the disease will.but he is going to try differnte inhaler and antiobiotic good luck with that as the treatment does not seem to make any difference to my condition anyway has given appointment to see him in 6 months if im still here

15 Replies

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  • So sorry teaky19 did thay about your eating .. Or vitamin b12

    Need to stay clear of fags and car polution .. Is nitros oxide that a think is doing us in

    Hope you been able to eat proper and at least is not give up on you so must be hope

    Take care wishing you all the best

  • Keep being positive an lets hope the new inhaler an antibiotics work, I've just done a eight week course of pulmonary rehab you have a laugh an meet other people who are the same as yourself, an that they don't push you on any of the exercise you only do what you can, I've liked it and I've made some new friends in such a short time, they also give you a information pack with lots of info in it that is very useful lol xx Bliss

  • Hi teaky, I'm end stage also, lung function less than 20% now but no-one has ever given me an end date and I hope they don't! I don't feel as though it's bearing down on me though, just a very slow deterioration. I only have emphysema though. Hope your rehab and oxy prove beneficial. Let us know how you go on. Libby x

  • teaky sweetheart I hope the change of inhaler, abs, 02 and pul rehab help you to feel better.

    Love cx

  • Try to stay positive the pulmonary rehab has been great for my husband he only has 27% lung function. Keep fighting! TAD xx

  • Good luck to all and keep fighting. God bless you teaky and thinking of you. xxxx

  • thanks for the kind replies to daz the only time I have had any appetite in the last year was with the steroids I asked him about a maintenance dose he said no hefeels I am going to have enough to deal with without having to put up with side effects of steroids he is alright with emergency pack.he did tell me that if at anytime I am finding it difficult to deal with what I will have to go through ive just to pick up the phone and he will do every thing he can to help me. I am quit ill about 5 days a week my family even no when im ill as I am totally grey.i have a very loving and caring wife and family and they are doing every thing they can to help.i have been added to palliative care register my wife has a carer comes in to care for my wife. she told me this morning that she is trained in palliative care and she will gladly care for me when the time comes.what a lovely lady

  • Hi teaky19 cheers hope things get better for you

    Cheers all the best

  • Hi Teaky and the others who are so ill, I do so hope that things do improve for you and that you all have a wonderful Christmas , and that somehow you all prove the doctors wrong ........

    My best wishes and love to go out to you all

    Sohara xx

  • Sometimes we all feel low Stitch, please moan away it helps to get things off your chest ( & and I am not just referring to sputum here :):) ) I actually do not remember you moaning anyway :):) But I am REALLY pleased you are feeling better today xxx

  • Hi Teaky, thinking of you and wishing you the best possible. Take good care :)

  • Hi Teaky...the situation seems a little more positive than it did before you saw the consultant and I am glad for you.

    You have days when you're feeling very poorly and they must be hard to bear but I'm sure with the help that you're now having there'll be some brighter days ahead.

    Also good to know that your wife is being cared for by the lovely nurse you mentioned and that she would be there to help you also.

    God bless and best wishes to you all ~ Lovelight xx

  • Hi Teaky, Really hoping the new antibiotics help, keep strong, Love to you both, Heather X

  • I agree with everyone else Teaky, hoping your new AB help somewhat.

    Sending hugs and best wishes for all who are ill at this time. xxx

  • Don't settle for that . They told me 9 yrs ago I was stage 4 and possibly could live 4-5 years no one can tell how long u have they can guess. I quit smoking and started taking care of myself My lung function has went down since then 9 yrs ago it was 30 .They gor one at 13 and one at 20 so I really don't know what mine is . Cold weather brings mine down that why I ordered mask. Just got home from week in hosp from infection. But I don't plan on giving up to die. I will be fighting it all the way. So don't give up just live as best as u can and do everything to help urself that u can.

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