My wife has stage 4 emphysema,what do I look for next as this progresses?

[cz4806]

3 yrs. ago my wife was diagnosed with COPD. At that time she was put on oxygen part time and within 3 months she was on 24/7 at 3 liters. 2 yrs. ago her saturation level walking was 97 and this year at rest it was 89. Last lung capacity test was 18% and that was about 1 1/2 or 2 years ago, it's too stressful for her to have another so she has refused to take another. She was also told at the beginning that she was a prime candidate for a transplant, which she refused. She has also refused in patient steroid treatments. She has made no effort to be more active to help her condition. Are there more stages of emphysema? What do I look for next as she will just keep getting worse? How much time, approximately,  would be the best guess as to how much time do I have to get her affairs in order before she passes?

[Dottie1968]

Hi, my name is Kelly! and I'm the registered carer of my partner of 19 years. My partner, pete, has been diagnosed with stage 4 of emphasemia approx 3 yrs ago. He is now on oxygen 24/7. He too refuses the "breath tests" at his respiratory appointments. He's only 59, and we have 2 young children together; 12 & 10. In the last 6 months, I have seen his health deteriorate dramatically. Upstairs is a no no now...we have a hospital bed n commode in the lounge for him  as he's not been able to get upstairs since January this year. Because of his difficulty in breathing, he's now annarexic 41 kilos, he also has osteoporosis, osteoarthritis, and to top it all, basal cell carcinoma, (BCC), which is skin cancer. Because of how bad his breathing is and how I'll he is, they can't chop anymore out, so they just keep there eye on it as much as poss. After reading ALL of ur comments, I don't feel so alone anymore!...luckily, I'm only 45, and have to be strong for our children. Some days are harder than others, like any illness I suppose, but living with it wises you up big time....many thanks to u all for letting me read all of your comments....best wishes to each and every one of you xx

[leebeegee]

Hello, my husband has had 3 lung function tests, of course he did aweful, and the news is grim for him, I don't even understand the premise of this test, his lips are blue, his feet are blue he can't breathe clearly, he is scowling and frustrated, but they want to see that he is more sick? these illness' don't go away, they don't perminantly improve, there are medications that can stave off some aspects for a time, but I don't understand making the patient feel as a failure once a year. :( I love my husband, I want him to have moments that are happy and easy, to be able to ride his bike, or sit in the sun and rest. To laugh, I really need a doctor that cares about who my husband is. I have a great understanding of the disease, he does not. So why does he need to? No one needs negitave information. I am sorry I am ranting a little, I just understand what so many of you are going through. Leebeegee

[leebeegee]

my husband has actually been doing ok, he of course no longer works and we now live in Florida in a tiny house. He is sedintary, and it doesn't help that we have gotten no help from SS or disability or anything since his diagnosis almost 3 years ago. His medication is 1000 dollars a month and while he was on oxygen we could not afford to keep it. He went for a chest x-ray today and the doctor moved his appointment up by 2 weeks. a bit nerve racking. He seems oblivious to his illness, but he likes it here in the sun. Hopefully this doctor will help him get his disability so he can breathe easier. literally. For now I do virtually everything that needs doing and I feel alone much of the time. I am strong though and I want him to be with me as long as he wants to be. I think he is also a bit scared, but who could blame him. I am scared for us both. Good luck to all of you. Lee

[CommandoGrandma]

I will be praying for you and your wife.  I have COPD and have not done the things I should do to increase my lung capacity, etc.  However, I am now working very hard to follow through with doctors' orders, suggestions, and medications.  May God bless you and give you peace.

[christina0078]

So sorry to hear about your husband! My dad has all the same symptoms and I'm so scared for him. He is now on 6 liters of O2 at a time. I dont live near him so i feel bad that I cant help. It's been a few months since you posted your comment, how is your husband doing?

[leebeegee]

My Husband was diagnosed 2 years ago, He is stage four, he turns grey, blue, his feet turn purple, shallow breaths while he sleeps and can't walk up 3 steps with out huffing and puffing. He has never been a sickly man actially quite the opposite. I fought hard to try to keep my home through all of this but now have resolved to walk away from it to a smaller home in a sunnier place. with no hills. He seems really happy about that and has agreed to get Oxygen therapy now which he had refused up til now. I don't want him to live a long time. I want him to live a good time. So I changed my dreams and am trying to give him some. He is 44 years old and doesn't even have a grey hair. I am the only one besides his doctor that knows how sick he really is. Love your wife and remind her that each day is precious. A cruise is a lovely Idea or just a quiet afternoon at the park. Best of luck to you. Hope some of our dreams come true.