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

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?

[lynnkay]

My mother's brother, my uncle was in end stage COPD, when he was diagnosed. The doctors told my uncle he had 18 mths. to 3 yrs. to live. My uncle ended up living over 8 yrs. with end stage COPD before he passed away. I believe you saying your wife is in stage 4 emphysema, means she is in end stage. It depends upon the individual just how long a patient can live.

Is your wife taking inhalers to help her condition? Steroids are used to treat COPD. My understanding is steroids can be effective. Steroids though can be hard to tolerate. My mother had idiopathic pulmonary fibrosis and passed away not quite 3 yrs. ago from this awful lung disease. She took prednisone. There were side effects.

I too have COPD. I was diagnosed not yet 3 yrs. ago. My only sibling a brother has COPD as well. I am 53 and my brother is 50. We both found out we had COPD, while our dear mother was dying. Rather my brother found out he had COPD, about 6 mths. before my mother passed away. I found out I had COPD, 3 mths. after our momma passed. Thank God she never knew we both had lung disease as well. My mother was never a smoker in her life. My brother and me were. But, lung disease is running strongly in our family most obviously.

I do believe in lung transplants. Lung transplants save many lives. But, I personally will never have one, as my lung disease progresses. My mother passed away 4 mths. after receiving a single lung transplant. I thank the person with all my heart, for giving their precious lung to my momma. This person in my opinion deserves a definite spot in Heaven for such a gift. But, my mother left the hospital only 2 days, during the 4 mths. after her transplant. She spent 4 mths. in the hospital. My mother suffered unbelievably during those 4 mths. and died a horrific death. Haunts me still to this day. Transplants are blessings. But yet, when they instantly start rejecting like my mother's did, the suffering from the transplant, becomes worse than the actual lung disease that they have. Just my opinion.

I will pray for your wife and you. I know it is hard watching this with your wife. It is very hard on the caregiver I know. I had to take care of my mother. You feel so helpless much of the time. My heart goes out to you. God Bless You. I don't know if anything I had to say was of any help.

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[AudPat]

Apparently there are many factors that  determine the progression of emphysema.  Thus making it almost impossible to predict life expectnancy at any point.
Stage 4 does apparently relate to endstage emphysema.  However the stages are not an exact science.  Many lung specicalists prefer not to use them or use such terminology as  end stage.  It is not necessarily informative or  helpful and can be psycholigically very alarming for the patient.  
Hopefully the information at this web address for the National Health Service in the uk will be of help to you.  I have found if very informative.  
http://www.nhs.uk/Search/Pages/Results.aspx?___JSSniffer=true&scope=&q=copd
Very best wishes

[cz4806]

Thanks for your comment. I wanted to know if there were any stages past 4 and what I can look for next as her disease progresses. I guess that I look for her to start turning blue next. The answers I have gotten have been very helpful and understandably vague as to life expectancy but I expected that. She has apparently dicided that she is just going to wait and die. She does nothing to help her condition such as walking more to help her breathing improve just a little. She is content to just sit and watch TV all day. Only time I an get her out is twice a year for her annual Dr. visits. Thanks for your wishes and help.

[memory65]

I too am suffering from severe emphysema and also heart disease. I think your wife just wants it to over, I can' blame her. when your life's dreams are gone you feel as if you have nothing to live for. why not talk her into going on a cruise, it' not so taxing. I THINK THOUGH THAT SHE HAS HER MIND MADE UP.
I will pray for her and for you. I know what this has done to my husband.
                                                        memory65

[lynnkay]

AWWWW WHAT A BEAUTIFUL SUGGESTION ABOUT THE CRUISE. I would never have thought of that.

[MrsPinas]

I know it's hard watching your wife suffer trying to breath. I know it seems she is giving up, but she is fighting every second, every minute, every hour of the day. It may not seem like it, but she is. My husband is living with COPD. His last test in Dec. 09, he has 18% of his lungs working. He struggles everyday with the sudden loss of air, the consist coughing. Just like your wife does not want O2. He does try and stay active. He visits his family when possible, sits on the porch and talks with the neighbors. One day of activity means two days of recoupment.
Try and be supportive as much as possible. I know it's hard, you want her not to give up. Keep you head up. My husband doctor told him two years ago he had 1 to 3 years to live. Then in Dec.09 he told him that the copd is progressing rapidly. He has 1 year.
Keep your head up..My prayers to your family.

[cz4806]

Believe me I do try and be positive and help as best I can but she does nothing to keep active. I can't even get her into the car to go for a drive because she has anxiety attacks because she is afraid of running out of O2 in her tanks. She was told at the onset that if she would get out, walk just a little more each day it would help her breath better but she has yet to do anything like that. I ask her if she has and she keeps telling me no, she doesn't feel like it. She knows what it means and that it will help but at her last check-up her specialist told her the same thing again and said straight forward that it might be too late to do any real good but it still could help a little. Again she hasn't even tried. She has no cough but about 2 or so yrs. ago she had a lung function of 18%. She refuses to have another because it is too stressful for her breathing. I can only guess that it well below 18% now. Her pulse ox 3 yrs ago was 98 walking and in Apr. it was 89 sitting. This is the second time I am watching someone I love die. We lost our youngest son, Mark, on Dec. 26th 1998 at 6:30 PM from a recurrence of bone cancer after it attacked his lungs that time. He was 22. thanks for your reply and prayers. My anti-depressants seem to be working so that is some help.

[MrsPinas]

I understand what you mean about your wife not wanting to go thru the lung function test. My husband feels the same way. He has to do a stress test but pain he goes thru after the test. I try and tell we need to know if his heart is in distress. I'm sorry for your loss. Several family member's have past away from Cancer. It's very hard for the care givers to watch our loved ones suffer. We can only make them comfortable and supportive.
Keep your head up.
My prayers.

[miranda111]

my father passed a week ago with emphysema after 12 years of first being diaognosed, it is a cruel disease which slowly in capacitates the person for many years my father was able to act a notmal life, then over the past 5 years he has has lung collapses and become more thin even though he eats like a horse, he was unable to now walk short ditances and without difficulty, recently he was admitted to hospital they said he was fime and that i was to go onto holiday even though my father was seeing things and talking to people who wernt there i put it down to hospital medication, I went on holiday and had carers in place the next thing three days into my holiday i got the dreaded phone call he had died even though he looked well i still cant get the images of him looking through and around me in hospital as if there was something rlse with us !!!!

[little_weed]

Miranda,
My thoughts and prayers go with you.
There isn't an hour or a day goes by, without me thinking of my mum who passed away two and a half years ago. There isn't anything harder than the last memories of a loved one slipping away.
I make mum part of our everyday conversation, and talk to her in quiet moments and not only does it keep her memory alive, it takes away the pain. She herself recited the poem about "only being in the next room" not long before she left us.
I am so glad she left us before my diagnosis . . .

[debbiedeb205]

mother my bestest friend in the world has copd with 40% oxagen she cant walk to far without having problems breathing I want to learn more about it cause if there is something i can do to help her i want to...My thoughts andpreayers go out to each and everyone one of you dealing with someone or yourself that has copd..my god bless you all.

[hava]

Tell your friend to do this pranayam daily, and you do it as well. The oxygen level in the lungs and body will start to improve. Let me know when you start to notice the benefit.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
March 20 ,2011

[RISIS]

DONT FEEL UTTER FRUSTRATED , YOU NEED HOPE , TO REDUCE THE PROBLEM.  BHASTRIKA PRANAYAM ,  ANULOM BELOM, FOR OVER HALF HOUR EACH CAN CHANGE THE SITUATION. RAM DEVJI OF INDIA IS IDEALL FOR THIS. ANY CHRONIC PATIENT NEEDS HOPE TO FIGHT WITH THE DISEASE WHICH INDIRECTLY REDUCE THE PROBLEM RELATED WITH WORRY. I AM ALSO COPD PATIENT SUFFERING FROM EMPHYSEMA AGE 53+ MALE FROM INDIA. DON'T GIVE UP HOPE.   IF ANYONE SAYS TO DRIVE IN FIRE OR DRIVE FROM HIGH HILL -***@****

[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.