Need help understanding end stage copd
Posted , 9 users are following.
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
hypercat sharon02372
Posted
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
jude65855 hypercat
Posted
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
DawnDedee sharon02372
Posted
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
jude65855 DawnDedee
Posted
Good reply
DawnDedee jude65855
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DawnDedee jude65855
Posted
jude65855 DawnDedee
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I'm even more impressed, you're an inspiration!
DawnDedee jude65855
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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!
jude65855 DawnDedee
Posted
htnnkeepa DawnDedee
Posted
susan07204 sharon02372
Posted
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
hypercat sharon02372
Posted
Hi where do you live? If in the UK he should be receiving palliative care. This would consist of a consultant, a doctor, a nurse and maybe a social worker. Palliative care is patient centred and the aim is to make the patient as comfortable as possible at this time in his life. If you aren't getting this contact the doctor or consultant and ask for it. If necessary see another doctor and demand it. It is his right. Bev x
karen78573 hypercat
Posted
Thats the one palliative care! I'm quite suprized sharons doctor didn't suggest this type of care that her husband should be entitled too & other people of course in the situation! I could of mentioned palliatve care but wasn't sure if everyone with chronic illnesses are entitled to this type of help that's why I suggested an advocate because they can help in finding the help & by making contact with hospice's & so on!
It's a shame a lot of people are unaware that they have to ask for these services & may not even be aware of these services atall, that's why these forums are a must aswell also for emotional support, your right palliative care is what sharons husband are in need of which would lift some pressure of sharon herself & other people going through chronic illnesses of all kinds cancer ect!