Avatar universal

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?
30 Responses
518117 tn?1429276273
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.

You wife has not much Time.I have COPD and I am on 3 liters of O2 at night. My lung volume is at 33 %. I also have lung cancer but the Cyber knife works for curing those. I also walk and try to improve my lung capacity. I also use a steam shower and it helps at getting the junk up from my lungs. I also us water therapy(a swimming pool) for exercise. If your wife has given up then say Ciao. I refuse to give up or give in. I use Breo and Spiriva. I plan to only leave this life kicking and screaming. I refuse to give up or give in.
Avatar universal
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.  
Very best wishes
Avatar universal
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.
Avatar universal
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.
518117 tn?1429276273
806006 tn?1241108702
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.
Avatar universal
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.
Exercise made me much better because my muscles don't need so much oxygen.
806006 tn?1241108702
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.
Avatar universal
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 !!!!
980382 tn?1251481588
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 . . .
Avatar universal
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.
180749 tn?1443595232
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
Avatar universal
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.
Avatar universal
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?
914380 tn?1509974275
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.
Avatar universal
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
Avatar universal
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
Avatar universal
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
Avatar universal
I have/had stage 4 Emphysema and it got so bad I opted for a double lung transplant in 2009. It was he'll until I finally felt better in 2011. I could breathe like a normal person, started to play golf again and even started to hike. Life was grand until mid Nov. 2012.
Now it's straight downhill, massive infections, collapsed lung monthly and been intubated three time. Now in 2013 I cannot walk two steps.
I simply cannot wait to die then I will feel better. I have been a good man my whole life so this must not be Karma. To die at age 43 truly will not be fair but emphysema is the unfair east of them all
Avatar universal

My husband was diagnosed with COPD in the spring of 1988. He was 46 years old.  He continued to smoke and by 1995 he was on 2 lts of o2. In the fall of 1996 he had lung reduction on both his right and left lungs.  3 weeks later he was diagnosed with guillain barre.  Do to this unforeseen medical issue, the lung reduction didn't help him.  He quite smoking and in 1998 he was added to the transplant list.  After 18 months, do to the generosity of a loving family, he was able to receive a right lung on January 31, 2000. There were a few rocky times, a lot of medications and some additional medical issues (diabetes, osteoporosis, etc.) but none of this stopped him. He continued to exercise, both physical  and breathing exercises and was part of a pulmonary support group. He's as able to watch our children become great adults and parents, our 14 grandchildren grow and the birth of our 5 great grandchildren.  I lost the love of my life, to end stage rejection on August 1, 2013, a week after our 48th wedding anniversary and 13 1/2 years after his transplant. I miss him immensly, but know that I was blessed because he decided to have the transplant. My prayers are with you all, no matter what decision you make.
Avatar universal
I have stage 4 emphysema and I am 46. I have had this condition for 12 years. I am waiting for a double lung transplant. Why has your transplant worked out for you? I understand completely when you say you cant wait to die as I know how bad I feel and I know my body is giving up. I send all my love and best wishes to you xxx
Avatar universal
I feel like all thèse comments were typed by me, my mum is in stage 4, and day by day i see things getting harder for her, she was hospitalised à few months back, and it was scary and upsetting to watch, i take each day as à blessing now, its such à cruel disease....
Avatar universal
Same thing with my dad.  he was the strongest man I know,at the age of 73 never ever complained a day in his life.  I know he was so sick and never complained of his illness.  he had been in and out of the hospital- 4x over 1.5 years.  he passed this past January 15th.  He was on 4-5 liters sitting and 6-7 walking (even though that wasn't good for him) he slept with a Bi-pap, took his meds, took walks as advised.  Nothing seemed to help.  he was anemic without origin, he received quite a few liters of blood, but it kept dropping.  His heart was weakening from the lung disease so his legs would swell and his heart beat was irregular. His Blood gasses were increasing.  My dad had had enough.  i know he didn't feel good, he didn't want people to have to wait on him hand and foot. he was very independent and that was taken away from him.  I know he is in a much better place without oxygen tubes up his nose.  I just miss him dearly.  I know it is very rough for you all, I feel for you.  I would be sick daily, worried sick just thinking about him and how he would die. i just didn't want him to suffer.  The last week in the hospital was a little rough for him but the morphine helped him a lot to relax.  Keep the faith and pray. :)
Avatar universal
It's got to be so hard to watch her struggle with this nasty lung disease. Just try and be positive for you and her for the moments she has left. I hope she would go on a cruise for it's a life lifting experience rather than sitting in front of the TV. Wow and you lost your son so young with bone cancer. My heart goes out to you and your wife. You know I have a dear friend who also has stage four and she reminds me of your wife. She will not walk hardly at all. If she does it's 1/2 block to get her cigs but she usually depends on friends to pick up her supplies. She has a terrible cough and yes she does take a steroid inhaler along with another purple one. I can feel your pain and your right it's their choice of giving up and your feeling hopeless. May god help you be strong my friend. I will pray for you today to ask god to give you    strength to help you through this long journey. Take care!!
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