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Need help understanding end stage copd

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sharon02372
sharon02372

My husband was diagnoised with copd approx. 4yrs ago. this year after being in the hospital approx 12 times since last Sept 2014 he was told he had end stage copd. he has a triology machine at home and a nebulizer and takes several medications and inhalers. he is not on oxygen as he retains co2. He stays in our room alot and watches tv in there and when he feels like he can he will cook dinner or do some things but not alot. I see he is winded, crabby and short tempered. we have been married for 38 years and I and so scared I am going to lose him. I have been told that he could make it a few years but he is always saying he wont be here next year. he sounds like he is full of mucus but does not produce much and i do some cpt on his back when he gets a mucus plug. he also takes 10mg of prednisone a day but is not on oxygen. is this the normal process for this disease? We went to the Dr. the other day and he told them that once he coughs and clears his airay he can do anything. Well this is so not true I dont see him doing much of anything and when he does he has to go and lay done for awhile or the rest of the day. I am so confused...any one else experience any thing like this?

3 likes, 32 replies

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  • julia14760
    julia14760 sharon02372

    Posted

    Hi Sharon, I'm so sorry to hear about your husband my heart goes out to you both. I've had copd now for about 10 yrs, I'm on oxygen 24/7 . A couple of years ago I was having numerous chest infections, hospital admissions etc, but for over a year now I've been much better, maybe 3 infections in the last year and only 1 hospitalisation but that was mainly due to collapsed vertebrae due to osteoperosis the pain was making it difficult to breath. I still get very breathless and can do very little but I feel much better in myself. Does your husband do his exercises to help with the mucus, I don't have bother with this very often but I find the exercises do help. I've just started driving again and I try to force myself to do more as I felt as tho I was vegetating sitting doing nothing all day and I feel much better. There are still days when I can't do anything and I get very tired but I'm much better than I was. I retain carbon dioxide so I must always ensure my oxygen never goes above 2L . 2 years ago I thought my life was about over but now I feel as tho I have years left. Take care, you are in my thoughts. Julia 
    • sharon02372
      sharon02372 julia14760

      Posted

      Thank you for responding and for your encouraging words. He is doing his excercises that the Dr. has told him to do other than walking that has not been something he has done yet. I know he has to be a little depressed but wont admit it and I am going to talk to the Dr. about that. They did put him on ativian and that helps with the aniexty when he get really tight. We just went to the Dr. and they listen and say yeah you are really tight. but to me what does that me? is he worse? and I hate to ask these questions in front of my husband because he will not ask nothing. If I say he cant do this or that he gets mad and say oh I just did blah blah but that was last week. I dont care that he doesnt do it but he thinks he is more functional than he really is. last night he had a really hard time breathing and that just really worries me is he just going to quit breathing and I wont be awake to help him or what. hard times...
    • susan07204
      susan07204 sharon02372

      Posted

      Hi Sharon I know what you mean it pride they don't want to

      admit that they can't do something or that they need help.

      My mum collapsed just after Xmas and was rushed to hospitals

      then we were all told to get there asap as they didn't think she

      was going to last another hour but she has but we found out she

      had a shaddow in her lung and that then we found out about the cancer she can't walk but now she can take we steppe but I do think your dad with be a bit depressed and won't want to admit it

      Hope he get better soon xx

    • jude65855
      jude65855 sharon02372

      Posted

      Why do doctors use meaningless terms like "tight" and not explain what they mean?  Can you ask them if he won't?  Maybe even act a big vague, as in:  "I'm sorry I didn't understand that, what does it mean?"  Not what "you" mean because like all professionals they think everyone understands their own particular jargon (eg lawyers & computer techs etc).  You could also ask if he's "tighter" than at the last visit.  They should be telling you this themselves, why do we have to beg for information from these people?  

      I've found practice and community nurses MUCH better at communication and useful advice than any specialist.

      I don't know what you can do about him deluding himself, but not being able to do what you used to do is part of the condition, but it's also very variable .... some days I can do a lot, others nothing much, and I just explain to people I'm having a bad day and true friends & family accept it.   It's accepting it yourself that's the problem!

      As I've said on here before, it's hard to learn, but it's pointless, frustrating and depressing to keep focussing on what I can't do rather than on what I can.  The same goes for you:  you can't change him but I hope you have some support with the heavy burden you're carrying:  if not, get out there and find it!  You'll be able to care for him with much less stress if you have support for yourself

      Rehab group?  Usually include carers too, you'd meet others for mutual info exchange & support

  • jude65855
    jude65855 sharon02372

    Posted

    I'm sorry to say this Sharon, but you are going to lose him:  I wish I cd offer you something positive but I honestly have no idea about end stage COPD although I know I'll experience it one day.   

    He sounds depressed which is totally understandable, but it's sad to lose whatever years he has left to depression as well as COPD.   

    Is there anything he enjoyed when he was well that he could still take part in, even if in a wheelchair?  watching sport instead of participating, hobbies, general socialising?

    That's rubbish that he'll ever be able to "do anything" again with end stage COPD  - some of these doctors don't turn their brains on before they go to work in the morning and that's a cruel and stupid thing to say in his circumstances.

    Part of an illness like this is learning to accept what we can't do and focussing on what we sitll can, not being given false promises.

    I wish you well and I'm hoping for you and your husband that someone else on here has more practical advice or info for you.   It sounds as if you're looking after him really well - as someone doing it alone, I salute you

    • sharon02372
      sharon02372 jude65855

      Posted

      Thank you for your response, I know I will lose him but I am still unclear is how fast does this disease progress. My kids want to know and I dont know what to say other than enjoy what time you have. But he does not go out much with us he is scared he will get sick. I am hoping with summer coming he will feel good enough to go out more. And it is like at what point do you have "the talk" as to what they want in the end? But thanks for your honesty.
    • hypercat
      hypercat sharon02372

      Posted

      How long is a piece of string Sharon?   Some people can live a few months in end stage,  others 4/5 years or maybe even longer.   I have had 4 online friends in end stage die in the past 8 months and they were there for around 4 years.   The common thread seems to be increased and more serious infections and sats plummenting to a very low level.   One of my friends had 4 serious infections and with the help of his palliative care team fought them off but the 5th one finished him off.  

      They all kept their sense of humour to the end and I think this helped them live for longer though they all had to be very careful of infections and were usually housebound.  Tell your kids you don't know but the main thing is to make sure (along with his palliative care team) that he has as much quality of life as possible and is made comfortable.  x

    • sharon02372
      sharon02372 hypercat

      Posted

      Thank you and so sorry for you losses. We do not have a palliative care team, there is only me and if he goes to the hosp or Dr office that is it. I felt we needed someone to come in and do some cpt or send him to rehab but nothing. I just ordered his records and I am going to go take him to Mayo for a second opinion and see if there is more we can or should be doing. He is careful about infections he wont even go outside in bad weather which is a good thing. Do you think a second opinion is a good thing at this point?
    • susan07204
      susan07204 sharon02372

      Posted

      Well Sharon let's face it I don't think it would hurt at lest you

      would know you have done the best you can you so let's hope it help your dad let me know how you get on I be thinking about you and your dad good luck doll and remember to also look after your own help as it looks like you need to be healthy and strong

      to help your dad xx

    • sharon02372
      sharon02372 susan07204

      Posted

      Thank you and it is my husband...however my dad did pass from heart and lung disease. Thanks again and God Bless You
    • susan07204
      susan07204 sharon02372

      Posted

      Hi Sharon soz I thought u said dad so its ur husband I think u

      should go for a second opinion well it wouldn't hurt I take it from what you said he just putting his head in the sand as I know how that feels as I suffer from crohn disease and sever depression I

      also do that a times when someone close to me is trying to help me or tell me what I need to do I try and play my illness down

      cos I see the hurt and suffering there going through because of my illness God bless yous and I keep praying for yous xxx

    • jude65855
      jude65855 sharon02372

      Posted

      Do you have any support for yourself?  Social worker, community nurse, whatever?  You shouldn't be doing this alone
    • jude65855
      jude65855 hypercat

      Posted

      Oh yes, a sense of humour is a great thing!  I recently shocked some friends because I said I'd heard that most people with emphysema get very thin towards the end of their lives, so I was keeping some special clothes I love but can't fit into any more to wear then ....... I was serious, but it is sort of funny in a black humour kind of way.

      I hope it's not soon though and I'm doing my best to last as long as I can ...... all those things I want to do and haven't ..... some I'll never do now, but I am determined to somehow get to see Uluru again while I'm still well enough to travel.

      To get back to humour, I have a collection of DVD's and videos (yes, videos) of various people who make me laugh and there's lots of humour for all tastes on the internet ...... never fails to get me out of depression eventually

    • DawnDedee
      DawnDedee hypercat

      Posted

      Hypercat,

      I am interested to know if any of your friend's fatal infections were what they call Super Bugs.

      I have only 30 % of my lungs left and twice very recently I have contracted infections from being a patient in the hospital due to my lung condition. I have lasted 56 years with these bad lungs and have needed huge amounts of antibiotics. I am strong in my spirit but the fact is my lungs are bad. Super Bugs scare me.

      Hugs

      💛 Dawn, USA

    • jude65855
      jude65855 DawnDedee

      Posted

      I think you're right to be concerned about hospitals:  I was so relieved when I had pneumonia the second time and my new gp said I didn't have to go to hospital as long as I took the antibiotics faithfully and he could check me out regularly to make sure the pneumonia was receding.  I rested a lot and drank lots of water and fresh vegie juice and it was all fine, although I do realise that down the track it may not be so easy to manage pneumonia out of hospital

      The first time I had it I called an ambulance because I thought I was having another heart attack because of the chest pain and I had an awful time in hospital:  appalling food;  noisy snoring ward mates;  filthy toilet and a shower that didn't work.   Hospitals are the "best" places to get sicker in I reckon, although of course with something really serious we have no choice.

    • DawnDedee
      DawnDedee jude65855

      Posted

      Well put Jude. Here in the USA, some of our hospitals are like fancy hotels, so one would never suspect the germs.

      Last year after a hospitalization, I asked for a sputum culture after my lungs had become infected and I had staph. My doctor wanted me to come back into the hospital for a week of intravenous vancomycin. I said no because that is where I contracted the germ. So I asked to do intravenous at home with a pic line. I got my way and learned how to administer the antibiotic myself.

      Home is the best place to be when possible!

      💛 Dawn, USA

    • hypercat
      hypercat DawnDedee

      Posted

      HiDawn I dont think so.   Bear in mind though that they were under 20% lung function and had been diagnosed as end stage for a few years.   There does come a limit when your body can't fight any more and I think they just wore out. 

      One of them had fought off 4 chest infections but the 5th one got him.  Another had been in hospital and was then discharged.  A few days later her son found her on the floor and rushed her back in.  Her sats had plummeted to 17.   She died a few days later.  

      I do know people with your lung function Dawn and a couple of them are still working part time and go out when they can.   

      You are not at end stage and don't forget you can survive with a lung function as low as 6% so you are unlikely to be pushed anywhere near this limit even with a super bug.   Take care.   Bev xx 

       

    • karen78573
      karen78573 sharon02372

      Posted

      afternoon sharon02372

      I'm sorry your all alone coping by yourself & it shouldn't be this way & doesn't have to be! I don't know which country your in but if it's in england you can get an advocate who is of a great help they are like a second voice they can come with you to appointments & will take notes on whats said they are very good at finding out information of who can help! just look up online or on the internet if you have a mobile phone with internet or even ask at your local doctors surgery & ask if they know of info on how to get an advocate you can also refer your self once you get a number! I don't know if there are advocates outside of England but I'm sure there must be or similar help,I hope this helps here is a number for advocacy for London 08005252327 they should also be able to direct you to an advocat for the area youlive in. No more should you have to cope alone I wish you well & hoppe & sure you will get the help you both need! Please let us know........

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