End stage copd

Hi, I've recently found out my mum is end stage copd, I've been looking at loads of sites and trying to find out as much as I can. I came across the 5 year mortality and 2 year mortality. So confused, is this true, that end stage means about 2 years. My mum has been in hospital now for 2 weeks, and just want to get a better understanding of it all. Any advice I be so greatful

12 Replies

oldestnewest
  • Hi my first piece of advice is to stop googling. If you must then stick to recognised sites such as this one and the NHS. The term 'End Stage' is gradually declining now as due to new treatments people in this stage are living a lot longer than 2 or 5 years. It is usually referred to now as very severe instead. There are a number of very severe folk on here and I am sure some of them will be in soon to offer words of advice and support.

    I am thinking of you and your mum. Take care. x

  • Thankyou for your advice, it's been a tough 2 weeks, mums still in hospital, and it's what they said, if mums lungs was to stop at any point, that her lungs are that far gone, that putting a tube down to take over, would not be any good. So said they wouldn't do it, as she would not recover from it. So has left me so confused and worried x

  • I bet it has and I am so sorry. Has she been offered palliative care? You must make sure there is a care package in place for her before she comes out of hospital. The hospital or her doctor should arrange this. If not press for it.

    Don't forget in all this to look after yourself too as this is very stressful and you need to be strong and be there for your mum. A big hug for both of you. xx

  • Yes I agree don't Google it I have very severe copd and I hope to be around for quite a few years yet I am on oxygen now for last couple of years it makes big difference can't wait till it is time for lying on my sunlounger on the decking when summer comes hope not to long and please don't think of it as end stage copd it is not as there is no such thing

  • Oh dear....

    I have very severe copd and been told i need a double lung transplant and told that a chest infection could be fatal to me.

    Thats end stage copd..sounds like thats it really but i feel great right now. ive been in hospital a couple of times and im on mediation and oxygen but yesterday had a dance round the kitchen.

    Ive changed my diet and increased the alkaline in the foods i eat and saw my consultant on Tuesday who sat back in her chair with shock when she saw my blood gas results and results of the spirometry test...she asked me what on earth i had been doing because my results were the best they have ever been ...could it be the kale and spinach or the prayers people have been praying

    Who knows but i feel well and intent to keep it going as ling as possible

    When you mum gets home encourage her to take her meds and eat a good diet and stay away from anything that would aggravate her breathing , get fresh air and laugh a lot and enjoy your time with her...The doctors are not Gods

  • Many6513 What a great post to read, so very happy for you. Its not all doom and gloom is it. Enjoy your life whilst you are feeling so good. Sometimes it is not always best to look to far into the future just enjoy what you have now.

  • Things can change from moment to moment so enjoy the moment your in x x x x

  • Mandy. What a wonderful encouraging post, well done to you for taking good care of yourself.

  • Lots of great advice above Avy. As already pointed out, end stage is a rubbish term, its been redundant for quite a while now as people can live years with so called "end stage".

    Apart from a good diet which has been mentioned already, try and protect your mum from viruses and other infections. Getting an infection is likely to be the most threatening thing for her. So don't let anyone near her who is sick or seems to be going down with something.

    I assume your mum has a care plan in place so you both know what to do if she gets sick. She should have a "rescue pack" of medications at home in case she gets sick at the weekend or in the evenings (that's antibiotics and steroids). And dial 999 (NOT 111 who aren't much good) if you feel she's in difficulties.

    Sorry if you know all this already.

    Other things that may aggravate her breathing (see Mandy above) are car fumes, household cleaning products, air fresheners (terrible for the lungs), conventional candles as these are made of petroleum (like breathing petrol, just smells nicer, very bad for you).

    When your mum is home from hospital, speak to her GP or respiratory physio to see what exercise she can do. Just a few steps round the living room is much better for her than nothing at all. And as she recuperates it may be that she will be able to do just a little bit more each day. No matter how little she can do, it all counts as exercise.

    And plan treats for when your mum gets home, things to look forward to. You're a lovely, loving daughter - your mum must know that and it will give her strength.

    Good luck to both of you x

  • Hi Avy, Yes the above is all good advice and I am pleased to see that folks have told you that " end stage " term is disappearing. I am 72 yrs young and was diagnosed " end stage " about 12 yrs ago with an FEV 1 of 30% . I am now down to FEV1! of 19%. I retired 3 yrs ago and I am still active around the house and garden. I am just trying to show you that as far as I am concerned we are not like a packet of frozen peas with a sell by date. When your mum gets home try and encourage her to exercise both body and breathing.

    Cheers Dave from the LoS.

    breath easy exercise often.

    My motto is : I have COPD but COPD does not have me.

  • Hi you must not get hung up on terms! I have been 'end stage' for years and I still work! Yes it is hard and I have to do everything to stay active but there is plenty you and your mum can do to make life easier once she is home. First lots of rest to recover then start very easy exercise. Don't do everything for her or she will lose the ability and drive to do things for herself. Just start with little things like making a cup of tea and slowly add new things. And make it fun! Good luck . Joe x

  • I used to have regular chest xrays and visits to see a lung specialist. One day last year when I phoned to confirm my appointment, I was told it wasn't necessary. My chest xray hadn't changed in ten years, my lung function was slightly better, and I was getting the best medication available. This made me feel really sorry for myself, I felt abandoned, and Googled why this could be. I then came across "End Stage COPD". Shortly after getting this news, I had a visit from a pulmonary nurse, who told me she would come once a month. She checks me over and is able to supply most of the medication I take. She passes this information back to my doctor.

    She spends about one hour with me discussing my illness and any other problems I may have. Once a year she attends conferences overseas, at which the latest treatments for lung infections are discussed.

    I have an emergency supply of prednisone and antibiotic tablets. If need be, an ambulance is just a phone call away.

    When she is back home, make sure she keeps warm, and as Duffer says, help her to do simple exercises.

You may also like...