after 2 years and 2 months when I was told I had 6 months to live its finally caught up with me I have copd & pulmonary fibrosis and have phseudamonus infection. I was admitted to hospital was on iv antibiotics for 3 days sent home on4th day with antibiotics seen consultant told no more treatment as was not working.i saw an anticipatory nurse who is forming a plan for my palliative care over the last 3 days I find myself going down hill very fast struggling to walk 3steps without struggling and gasping for breath had shower with home carer and had to stop 4 tmes to gasping for air.ihave started an emergency pack but don't know if it will work.im on 6litres and I have just put myself on 7 litres I put uoto 9 when doing anything and put back 7 after settling down which does not help in anyway thes episodes are terribly frighting I know I have to die shortly.has anybody been in or going through the same as me.

18 Replies

  • Hello Teaky I have often thought of you and wondered how you are , you have proved

    Them wrong and you can do it again n

    Take care


  • Thinking of you Teaky. Xxx

  • Dear teaky, you say that palliative care is being arranged....can your carer contact your gps surgery and tell them how your condition is affecting you now and hopefully you can get help immediately.

    Thinking of you.

  • Oh teaky you are having a very hard time - I was sad to read your post and hear how difficult you are finding things. I wanted to send you lots of love and hugs and hope that you are able to start feeling better soon. xxx

  • Hello teaky, what a nightmare for you, please keep coming on here for support, good to know about the care package in place for you. Thinking of you and hoping you feel calmer soon xxxx

  • Oh teaky I am so sorry to hear this. I am thinking of you my love and wishing you all the best. I don't know know what to say. Bev xx

  • Hope you can pick up a little better as the days go by let's hope just do not give in as it will mean defeat fight as hard as you can like someone else said you done it ones you can do it again keep it up GOOD LUCK

  • Hello teaky, Im sorry you are going through this awful time. As I understand it, the point of palliative care is to make you comfortable. I hope they can do more to make you feel better and more peaceful. It's such a hard thing to go through - thinking of you and sending love, jean

  • thanks for all the kind concerns and encouragement I will continue to fight this disease

  • Please do teaky. Look at palliative care as a friend helping you with things you can no longer be bothered with. I'm sure you will have a great peace of mind which will enable you to keep on fighting.

    Love Suzyxxx

  • 👍,

  • Love and respect to you.

  • thinking of you - lots of love xx piggi

  • Oh god teaky, no never been in that position and am very sorry to hear you're so poorly. I have pseudomonas but it is under control, and I don't have PF, just bronchiectasis & asthma. Is there nothing they can do to control the pseudomonas? I am on inhaled antibiotics. You've proved them wrong before so surely you can do so again. I wish you strength to keep fighting, thought it must be very, very hard, and hope they can help you more with your breathing. You must be worn out.

  • hi teaky, I have advanced IPF and was diagnosed 17 months ago, had it a lot longer though. I can walk, carrying nothing proberley 10 12 feet and and extreamley out of breath and have to sit down. I am on 10 litres at rest and sleep and 12 litres on movement. I hate "breathing" my lungs going up and down, but cant get any oxygen in me and fighting to get my breathing back under control. I also have gone down hill in the last 3 months and spend all day in bed which my family have moved into the sitting room. its a horrible feeling not getting oxygen and can be scarey sometimes when I get real bad. nobody goes through the same thing and we all deal with it differently, I just wanted you to know that there are others out here trying to cope the same as you are, and it a'int easy!!! I am waiting to have more tests to see if I can go on the transplant list, but If I don't get on it in april the chances of surviving a year or 2 I think are remote. because like you have deteriorated quickly. let people do what they can for you and take the help offered, it takes stress of you that you don't need. I am really sorry you are in this position now, it sucks!!! all my love and thinking of you martine.

  • All your friends here on HU will be thinking of you Teaky, and sending you their love and hoping that you do recover a little . Always remember that we are all here for you, any time, night or day that you need to 'chat' to someone.

    I hope that you can feel the love and the caring that comes from everyone on this site, and that makes you know you are not alone and we do all care

    Lots of love to you Teaky

    From Sohara

  • I sure hope you can find some relief and improvement with your breathing as that is terrible being that short of breath.

    Wishing you all the best.

  • Thinking of you Teaky. Lots of lovexxx

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