End stage COPD what to expect

Posted , 10 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi My mum is 73 and has COPD. Cor pulmonale, pulmonary hypertension, she is a co2 retainer, she is on LTOT at home she has a bipap but just can't get on with it, she came out if hosp yesterday and today I had to call an ambulance as she had probs breathing and chest pain, the paramedics and the nurse practitioner who came was fab, so informative, helpful answered quite a few questions that no one seems to Answer, he told us she was in end stage I asked if we were looking at years or months and was told months, shocked still even tho it was what I thought, Gp came out to visit at paramedics request and disagreed with that info, now really confused, who are you supposed to believe, Gp said you can go on for ages with end stage and to keep positive, what is the truth?? We do always try to keep positive, but facts are needed and I felt that at last somone had been honest with us, any opinions welcome.

1 like, 13 replies

Report

13 Replies

  • Posted

    Hi, my mum was told three and a half years ago that she had end lung and we were sent for as she was dying. They didn't want to treat her but we fought them to do so and we have had all this time. She is on 2l of 02 at home round the clock but she is also a retainer. We have had a few scary times in the last few years but she always keeps fighting and bouncing back. She is completely bed bound but still enjoys life
    Report
  • Posted

    Sorry that wouldn't let mew rite anymore. I don't think there is any way of knowing. The consultant told mum recently that she never ceases to amaze him. We monitor mums 02 and heart rate with a wee oximetre which gives great peace of mind. What I will say is very often the medics give up before they start so while your mum is prepared to fight then you fight for her, she may well surprise you. There's a fantastic group on fb called copd uk and the support is amazing. If you want to know anything else just ask.

     

    Report
    • Posted

      Thank you for your reply, so pleased that u fought for your mum and she is still here, I will try and stay positive and keep her upbeat .
      Report
    • Posted

      Hi Michelle , I noticed in your post you mentioned a copd uk group on Facebook, how do I join this I've tried searching for copd uk without any success. Thankyou for any advice xx julia
      Report
  • Posted

    I have had COPD for 14 years and I know that I have probelms now, I have always been able to walk shop enjoy life etc, but since my Consultant found this shadow on my right lung area, I have a CT scan and broncosposy in a weekor so, my breathing is now very laboured,. even my morning showers have stopped as it takes too much out of me. I think you hit it all on its head it's up to you the patient or carer, keep [pressing for info ask questionsbut most important DON'T give up!!
    Report
  • Posted

    Hi,sorry to hear thi about your mum.Is the nurse a COPD specialist? if so listen,to her,she'll have more knowledge of your mums condition.
    Report
  • Posted

    I also believe end stage can go on for a long time.  My husband is also a C02 retainer and is now on a oxygen hood which blows in oxygen and throws out the carbon dioxide. His lungs are nearly totally caput, and won't dispel CO2. He was rushed into hospital this week (where I was asked by the A & E specialist, that if he had a heart attack did I want him brought back, I said yes, of course I do). and dosed up with antibiotisw for his infection.  The staff are fantastic and I honestly do not believe they would go to all the lengths they have done for a man who will die as soon as treatment stops.  We are taking one day at a time and do not know what our future holds but at least the staff have given us chance to be together 
    Report
  • Posted

    Our GP came to see my husband who was end stage and he honestly told us that GP's were jack of all trades and master of none as they deal with all illnesses and specialise in none and the people to listen to is the specialist of that particular illness you have.  That is why GP's refer you to specialists as they are baffled about what is causing your problems.  Listen to the person who knows what they are talking about.  My husband was retaining carbon dioxide when he got a pneumonia and was on the C pap mask which he absolutely detested.  When he came home we discussed what could be causing our infections, as we always got them at the same time but his always turned to pneumonia. It always happened in the summer months, never in winter, and we hit on the idea that it was the air conditioning in the car, we turned it off and me and my husband went 13 months without having an infection or being admitted to hospital, that was one whole year of not being what he called being properly ill.  It was fantastic.  One day we were taking my son and grandchildren out for the day and it was very hot inside the car and without thinking my son turned on the air-conditioning, it was about 1/2 hour before I realised what he had done, as the back vents were turned off, I shouted, turn it off, but it was too late, both myself and my husband got very ill with chest infections and it turned to pneumonia for my husband who was rushed into hospital where he sadly died the week after in  August 2015.  I have always said, that as long as you can keep free of infections you can keep out of hospital, at the first sign of anything, take your standby antibiotics, don't leave it too late, my husband, when he felt ill, said he would wait a couple of days to see if he felt better, well he left it two days too late, you have to be sensible about it.  It is the same with many illnesses, it is not the illness you have got that kills you it is the infection you get that can turn to pneumonia because of the illness you have got that kills you.

    We even stopped people coming to the house who had colds etc. just to keep him infection free.

    Report
  • Posted

    Well i know the truth,i have been on end stage for years,5 years ago i went into the london bromton hostpital and was told my lung capacity was a mere 7.1 left and they could not do anything for me. Most peaple die around 18-13  , for anybody having a operation it will take 13 p% of oxegen just to rig them up, so i would die on the operating table, on my mere 7.1 i walked into the hostpital,i might add under due stress, and they could not believe i was not on oxegen. I was sent home after a week of test, bassicly go home and die,and that was 5 years ago ,and ime still managing on home oxegen ,i walk slowly ,but still plodding on . If anything now ,my problem is anxiety 
    Report
  • Posted

    Hi, Is your mum ok and are there any tips or advice you may be able to give as I feel the guidelines of life expectancy of endstage copd are so varied, A friend of mine has endstage and is finding a hard balance between getting enough oxygen to keep sats between 88-92 and being able to disperse co2 as a retainer, so tricky to balance the two, any advice would be welcome as I lost my dad to endstage recently and would like to further my knowledge as I'm seeing this dreadful diesease more and more.
    Report
  • Posted

    It really depends on the person's situation and habits Redsikita24.  Someone who is bedridden each and every day with end stage COPD may not survive as long as someone who can still be active with end stage COPD.  So for one person they could go on for many many years for another not.

    I have known one person end stage who lasted 7 years  and another who was taken quickly with heart failure.  It can be an unknown quantity.  Some indicators may determine an earlier departure, on the other hand someone who is end stage doing all the things that will help them from day to day may be considered to increase their likelihood of living longer.

     

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up