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?
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
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
Hi I am sorry to hear about your husband. This is a terrible time for both of you. You can live in end stage for years but eventually he will reach a point where life becomes unsustainable. I know the least lung function to survive is 6% but oviously an infection might push him either close to that figure or beyond. Spend as much time with him as possible but you need to face up to the fact he won't have a lot of years left but you never know do you?
I am sorry if this sounds harsh but there is no point in soft soaping it. x
Hi Sharon,
Did they tell you the number of his level of lung function? Mine is 30 % lung function and I have maintained this for thirty years. I am 56. I know what it is like to feel short of breath from doing simple easy tasks. And I know what it is like to feel suffocated. I have been admitted into hospitals, visited Emergency Rooms and doctors offices and specialists a thousand times.
Your husband has mentally given up. He must find a reason to live again.
I am full of helpful suggestions because I am like a walking miracle being born with diseased lungs. But my secret is that I REFUSE TO DIE FROM COPD!!! and I seek all the knowledge I can about my condition and all the ways that I can help myself survive on a daily basis, to put myself at greater ease And experience as much quality of life possible.
I do not want to sound harsh at all because I do care about others who suffer like me. There is something I want you to tell your husband. He cannot predict his death and it most likely will take longer than he wants it to take. I have not been so lucky to die quickly. He has the power of mind over matter and while COPD is wretched, And permanent, there are many ways to fight back!
One step at a time. He is frightened and most likely depressed. Start there.
I am with you both in spirit!
💛 Dawn, USA
My congratulations on maintaining that level for so long! I thought I was doing well to keep it at 30% loss for only 3 years - you give me hope.
Good reply
Hooray, someone else on here who tells it like it is rather than "soft soaping". Watch out, the soft soapers will get stuck into you as they have into me.
My concern is his depression and it's really hard for someone else to help a depressed person without some help, professional or otherwise. I hope she has some support with this
Thank you Jude.
I probably wrote it wrong, but I lost 70% lung capacity and live with only 30% left since age 32.
No you didn't get it wrong, I did - sorry about that.
I'm even more impressed, you're an inspiration!
Well, I must still be alive for a reason. Thought it was to adopt and raise my 3 granddaughters which I did 10 years ago. They are still young and the stretch ahead sometimes seems impossible for me to get through.
Then all my extreme physical problems are worth something, not just cruel and senseless, when I can even in the least way help someone else.
This forum has helped me so much that I just want to give back!
And you are doing just that, I congratulate you again
Hi Sharon I really don't know much about this COPD apart from that my mum has it and now has lung cancer but I do know if you husband
cough up anything it doesn't make a difference what ever doc you seen didn't know what he talking about if he cough up anything he still will have trouble breathing hope all you and you husband and family all the best
and I pray for your and all who suffers this horrible thing as my mother in low all so had this but as died a few years ago it not a nice thing to watch your love ones going through this and we are helpless all the best s
Susan xx
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...
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.
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
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
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?
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
Thank you and it is my husband...however my dad did pass from heart and lung disease. Thanks again and God Bless You