update

its now 2 years since I was given 6 months to live I have end stage copd &pulmonary fibrosis also I am hypoxic on 4 litres oxygen 24 hrs just got out of hospital 2 weeks ago xray showed neumonia intravenous antibiotics home next day with 2 weeks ciprofloxacin just taken last tablet. just walking to toilet with oxygen on my my hands and lips turn blue I'm also on water tablets both feet and legs swollen with fluid I had an appointment with consultant changed 3 timesto January but now have appointment in 10 days time I don't think I have got any better has anybody been in this type of situation or should I see my doctor or resparatory nurse.

21 Replies

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  • Good Morning, Sorry to hear you are suffering. I am sorry I can't give you any advise but perhaps the helpline might be able to give you some help. You can call the helpline on 03000 030 555 Lines are open Monday to Friday from 9am to 5pm. Good Luck and hope you start to feel better very soon, lots of love TAD xxx

  • Hi, I have been trying to reply but failed for some reason

    I would be on the phone to your gp's surgery and explain your situation.

    Take care

  • Hello teaky love, it's good to hear from you but you do sound as if you could do with some help. Please phone the district nurse for starters because surely a commode in your room would save you struggling to the loo.

    Have your oxymeter on and let the respiratory nurses know what your sats are doing as they may want to adjust it.

    I wish I could come along and give you some practical help even so you have done so well up to now,but I think you really could be made more comfortable. sending love and hugs, huff xxxx💕

  • Hello Teaky lots of good advice. Just to let you know I am thinking of you

    Please take care

    Dorothy

  • Sorry to hear you are not so well Teaky,you have done well though,defying the shorter prognosis,you were given earlier.

    Im afraid I can't give advice,you have some good ones given you above,from our lovely friends,

    Do get in touch with your Doctor though,

    Gentle hugs to you,with love & prayers,

    Wen xxxx

  • Hello Teaky, the others have given you some good advice, which I can't add to, but just wanted to let you know thoughts are with you. It must be difficult for you, so please come on here if only for a moan, you are certainly entitled to. Take care xx

  • Hello, so sorry to hear you are so poorly. Given the severity of your symptoms, I would most definitely advise you to contact your GP for an appointment. Hope you get the help you deserve 🌷

  • Hello I think you need to get your doctor to come and see you at home

    Sending healing thoughts

    XxSally

  • Hello Teaky, i agree with everyone - you should contact your GP. In your situation you shouldn't feel bad or reluctant about getting help.

    Just to say Im thinking of you and sending love, jean

  • Hello Teaky, I am sorry that you are having horrible problems. The others have given you very good advice to get some extra help with your daily living. Muc love xx

  • Hi Teaky if you were given 6 months to live weren't you also given a team to look after you? This consists of several medical professionals including a doctor and nurse. They should be working together to make sure your life is as comfortable as possible and the nurse at least should be in contact with you often. You should have a number to ring to get immediate help. It sounds like you have been left completely on your own to cope which isn't on. x

  • Yeaky, you should be getting daily contact with professional nurses etc. Please, please find the strength to make a phone call to then. They must visit you at your home.

  • Hi Teaky

    So sorry to hear you are struggling so much. Good advice from your friends. Please don't hesitate to contact GP or respiratory nurses. They should be helping to make your daily living a bit easier.

    love cx

  • Hi Teaky, it's nice to hear from you again but, I'm sorry your so very poorly. I'm no expert in this but, I agree with other posters, you should have people coming in to help you out. Your doctor should be able to sort it out. I hope you can get some relief soon. xx

  • They gave me 3 months Teaky, years ago. I have decided not to go until I am ready. I hope you get things sorted out. xx

  • Hi teaky. ..your post was 4 hours ago. ..had I read it earlier I would tell you to phone for an ambulance. .

    I hope you are okay.

  • thanks for all the caring concerns I am waiting for care assessors coming for care to be put in place and re assessment for my wife I will be contacting my gp in the morning she will see me tomorrow she is really good with me ,thanks again

  • Hi Teaky glad you proved docs wrong ... Wish I knew what to say BUT only good thing is swelling is just feet

    Guess with you just coming out of hospital things like pneumonia take some getting over .. Ad try not to do to much pneumonia can be bad assault on your body

  • Hi Teaky

    I was told I had end stage emphysema in January but I don't have pulmonary fibrosis. I am on 1 litre oxygen and as a CO2 retainer have been prescribed a NIPPY mask to wear at night to get rid of the build up of poisonous gasses. Have you mentioned to your consultant about your lips and hands turning blue? That sounds like serious oxygen deprivation. I always check mine with an oximeter. I have been advised that my oxygen levels should be between 88-92. Please contact BLF or your GP for advice.

    Hang on in there.

    Malinka

  • i would let doctor or nurse know immediately that your hands and lips turned blue after walking to toilet. this will help your peace of mind to talk to them and i am sure they will know what to do to make you more comfortable. hugs to you....

  • i didn't read down far enough before commenting. thoughts are with you both.

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