COPD end stage: Anyone else?

Posted by robertjr @robertjr, Dec 16, 2017

Sorry havent been spending much time writing lately.Been going to hospital few times for breathing lately..Had a few discussions with pulmonologist,fev was 16 ,going to needa wheel chair.Right now cant even walk out to the car.Even room toroom getting hard..I realize copd doesnt get better but im only 63 not that old.

Interested in more discussions like this? Go to the COPD: Chronic obstructive pulmonary disease group.

@robertjr

Im sure its copd,had plenty of test through the years.Seems like things dont change for awhile then things go down sofast.Once things get bad never seem to return to full health.Start to feel like not worth doing anything too hard getting breath back.,start to wonder whatsgoing tohappen next time iget sick.

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i have stage 4 COPD and congestive heart failure. some days are ok and others are not so good. I am still driving and doing my grocery shopping but it is get ing harder every day. Just walking to the car is trying. I bought a cart with wheels which really helps bringing the groceries in. It is getting so that i do not want to go anywhere and housework is getting hard. But i believe God is good and will see me thru, The only thing that can really help any of us is a miracle. But i have place my health in God's hands. I did not think i have much time left but i have had a good life and i have a wonderful daughter, son in law and a 16 yr grandson. we all just
need to keep faith and let God due the driving. God bless all of you

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@tuffstuff222

i have stage 4 COPD and congestive heart failure. some days are ok and others are not so good. I am still driving and doing my grocery shopping but it is get ing harder every day. Just walking to the car is trying. I bought a cart with wheels which really helps bringing the groceries in. It is getting so that i do not want to go anywhere and housework is getting hard. But i believe God is good and will see me thru, The only thing that can really help any of us is a miracle. But i have place my health in God's hands. I did not think i have much time left but i have had a good life and i have a wonderful daughter, son in law and a 16 yr grandson. we all just
need to keep faith and let God due the driving. God bless all of you

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I don't know what stage I'm at. I was just recently diagnosed. But I feel the same as you when it comes to my belief in God and letting Him handle my condition. But I do fear how I will die. Will I suffocate while I'm awake? I'm so ready to get to be with my Savior. I just pray that He takes me peacefully like He did my Mother, who also had COPD. What do you do to keep the mucus out of your lungs? I admire your faith and I know it's the right thing to do. I've always depended on The Lord to help me through health challenges and He's never let me down. But there are still days that I get scared for a moment or two. Do you get scared on how the end will be for you? I pray The Lord will take you as peacefully as He did my Mother. It was a beautiful day with her and her passing was so peaceful. God bless you and keep you through this trial.

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I do sometimes get a little scared about passing. There are times when I am really short of breathe and cannot seem to get air in my lungs. I have been exercising by breathing thru the nose slowly and then breathing out the mouth. I have a lot of mucus as you do. Usually early morning I experience that. All I can do is Cough it up. There is mucinex that you can take to reduce the mucus. I do use that when it gets really bad. I do get a little scared but when the end comes and I am in hospice my doctor said he would not let me suffer, and I am relying on Jesus to see me thru. Hope you are in a lower stage then i am. I am on oxygen 24/7. But I am still driving and go to the store and shop for groceries. You have to keep pushing forward and not give up. My theory is FIGHT as long as you can. I do believe God will be with you thru to the end. I really feel it will be peaceful. Just keep your faith and I will say a prayer for you to get peace until God takes either of us. God bless and keep you

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I am also in stage 4 COPD and I am 73 yrs old and it is getting harder all the time to do the things we take for granted. My theory is to keep fighting till the end. I am like you just walking to my bedroom by the time i lay down i am totally out of breath. I am taking Trilogy and it does seem to help with the coughing and shortness of breath. Problem is COPD is a bad thing to have. I smoked for about 30 yrs and i quite 15 yrs ago hoping to avoid this. It seems I was fine one day and the next it hit me like a ton of bricks. I also do oxygen 24/7. That sucks. But I try to keep a good attitude and try to have some fun. I am still driving and doing my grocery shopping but it is getting very hard. By the time I get home i am exhausted. All said, try and trust in God and I guarantee he will see you thru this. Try to find the love and peace that only God can give. You are in my prayers.

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@tuffstuff222

I do sometimes get a little scared about passing. There are times when I am really short of breathe and cannot seem to get air in my lungs. I have been exercising by breathing thru the nose slowly and then breathing out the mouth. I have a lot of mucus as you do. Usually early morning I experience that. All I can do is Cough it up. There is mucinex that you can take to reduce the mucus. I do use that when it gets really bad. I do get a little scared but when the end comes and I am in hospice my doctor said he would not let me suffer, and I am relying on Jesus to see me thru. Hope you are in a lower stage then i am. I am on oxygen 24/7. But I am still driving and go to the store and shop for groceries. You have to keep pushing forward and not give up. My theory is FIGHT as long as you can. I do believe God will be with you thru to the end. I really feel it will be peaceful. Just keep your faith and I will say a prayer for you to get peace until God takes either of us. God bless and keep you

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Thank you so much for your kind words and your prayer for me. I'm not taking oxygen yet even though I have it here at the house should I need it. I know that The Lord will take care of me. He has in every medical situation I've had to go through. I guess every new medical problem is a little scary at first. Once I get a clear picture of what I'm facing I'll feel a lot better on what to expect from this disease, I hope. God has never let me down. I'm not afraid to die. I look forward to going to Heaven and being with my Savior. It's the "how am I going to die" that concerns me and I have to leave that in God's hands. I think God knows my fears and He won't let me suffocate. At least I pray He won't. But I will stay strong in my faith and I pray you will stay strong too and I will add you to my prayer list as well. Than you again so much for reaching out to me. I think it was meant to be. God puts people together in the oddest ways doesn't He? I love it. God bless you………….Shirley

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@mamawnebel

Thank you so much for your kind words and your prayer for me. I'm not taking oxygen yet even though I have it here at the house should I need it. I know that The Lord will take care of me. He has in every medical situation I've had to go through. I guess every new medical problem is a little scary at first. Once I get a clear picture of what I'm facing I'll feel a lot better on what to expect from this disease, I hope. God has never let me down. I'm not afraid to die. I look forward to going to Heaven and being with my Savior. It's the "how am I going to die" that concerns me and I have to leave that in God's hands. I think God knows my fears and He won't let me suffocate. At least I pray He won't. But I will stay strong in my faith and I pray you will stay strong too and I will add you to my prayer list as well. Than you again so much for reaching out to me. I think it was meant to be. God puts people together in the oddest ways doesn't He? I love it. God bless you………….Shirley

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I AM CLOSE TO YOU, I'M RIGHT AT THE EDGE OF STAGE 4. 2L of O2 just at night, some coughing not much tho, very little mucus and my fv1 is staying pretty steady, it is the build up of co2 that bothers me the most… that is where pursed lip breathing comes in. I take 3 nebulizers a day, DUONEB X4, BRAVANA X 2, BUDESINIDE X2, ALBUTERAL RESCUE INHALER ALBUTERAL and has me on AZITHERMYCIN. Have you been tested for ALPHA 1? I am almost 72 and next july 1 will celebrate 50 yrs married to an angel, don't tell her I said that. I noticed you keep mentioning GOD, he is a team mate, not a director, he needs your help, just like your DR does.

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@waterboy

I AM CLOSE TO YOU, I'M RIGHT AT THE EDGE OF STAGE 4. 2L of O2 just at night, some coughing not much tho, very little mucus and my fv1 is staying pretty steady, it is the build up of co2 that bothers me the most… that is where pursed lip breathing comes in. I take 3 nebulizers a day, DUONEB X4, BRAVANA X 2, BUDESINIDE X2, ALBUTERAL RESCUE INHALER ALBUTERAL and has me on AZITHERMYCIN. Have you been tested for ALPHA 1? I am almost 72 and next july 1 will celebrate 50 yrs married to an angel, don't tell her I said that. I noticed you keep mentioning GOD, he is a team mate, not a director, he needs your help, just like your DR does.

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Thank you so much for responding back to me. It's so good to have someone I can talk to . I have no idea what some of the things you are talking about. I haven't seen the Pulmonologist yet so I'm literally clueless on this disease and what I'm about to face. I have no idea. If I didn't have all this lung congestion I would think I was fine. But I have no idea how to get rid of it or how to get rid of it. My family doctor doesn't treat me for the disease. He only treats me when I get sick with bronchitis and unfortunately he doesn't show much urgency when I do get bronchitis. It was over a week before he could see me and I had to keep calling just to see if he would call me in an antibiotic. Anyway, I just feel very lost in this disease. I'm sure the Pulmonologist will be able to answer all my questions and get me on the right medications that should help me. Right now I'm just grasping at straws and seeing what works. And so far, nothing seems to work consistently. He gave me some samples of things but you know they are only for a few days and hard to tell if they really work. I think they give them to me just to see if I can take them without ay side effects I'm terribly anxious even though I try so hard to leave it in God's hands. But thank you so very much for listening and for offering any advice you can give me. And, I'm so happy that you have an angel on your side to help get you through this. Unfortunately my family act as if I just have a cold and never takes any time to help me, except for my one granddaughter who can't do enough for me when she comes home. She lives in Nevada and she's so wonderful to me when she does come home.
I guess as long as I'm walking and talking I must be OK. And I do try to keep things as normal as possible around them, so I really can't blame them if I don't speak up. I'm not one to ask for help. But thank you so much for all you've done for me. It means more than you'll ever know. I hope you'll share with me anytime you think it might help me and I'll keep you posted on what my Pulmonologist says when I finally get in to see her in November. I'll continue to pray for you and for your wife. She needs prayers too for strength, patience and guidance. She is a very Godly person and she will be blessed. I pray you continue to do well and take good care of yourself. .God bless you…………Shirley.

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Thanks Shirley. I had to go thru all the stages of scared, denial, angry and then like you I did not want to go out not able to breathe. Since i am in stage 4 and have a lot of other issues. Congestive heart is not good combined with the state 4 COPD. God does bring people together so we can encourage each other and knowing that someone else is keeping us in their prayers. My doctor had suggested a support group, but I was so in denial of what he was saying. But it does help me to out reach to you and it encourages me and brings me to tears. But God is with us. So FIGHT and keep reaching out because it is really a blessing to hear from you. My doctor said he felt I had maybe 1-5 years but I am going down really fast. I told him I do not want to be in bed and cannot get or move, I told hime I would go into hospice and he said he would not let me suffer when it comes time for me to go. My daughter is having a hard time accepting my condition. She says its not fair and I told her Life sometimes isn't but We have to accept the problems that some upon us. I am trusting in God to see me thru.
Laurel

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@jamienolson

hI @robertjr. I’m sorry to read this post- it hit’s home. My Dad has COPD. You are right….63 is young. I wish I could say I hope things get easier but with COPD things don’t get easier.
The Mayo Clinic COPD Diagnosis and treatment web page (found here https://www.mayoclinic.org/diseases-conditions/copd/diagnosis-treatment/drc-20353685) mention seeking a support group. Do you belong to one? or do you find that the support on Connect is sufficient? what are your thoughts on this?
For the sake of future readers and if you don’t mind sharing- What things have you noticed that make the day easier? What things can family and friends offer someone with COPD for help? Have you had any treatment for COPD?

sending peace your way. 🙂 Jamie

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I've just been diagnosed with COPD. I don't know what to expect. I have my first visit with my Pulmonologist in November. I do my best to lean on my faith but there are days when I get overwhelmed with what's going to happen to me when it gets really bad since I live alone. Sometimes I'm scared to death of suffocating. Hopefully my Pulmonologist can help me understand this disease.

My family doesn't seem to take much of an interest in my disease. i've told them what I have but they never offer to help me with chores. I'm not one to ask for help either. Maybe I should start asking for that but I'm so stubborn. I've always felt that if they wanted to help they would just automatically do it. We were raised to take care of our elderly. The kids these days only think of themselves and they don't want to talk about it either. I think it scares them because they know it's not a curable disease. Do you have any of those kind of problems with your family members? And how do you handle the really bad days? I don't know what to expect? That's what I'd like to find out…..what to expect. Does it get bad quickly or gradually? Well, thanks for listening to me and thanks for sharing your part of your disease. God bless you and be at pease……Shirley

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@mamawnebel

I've just been diagnosed with COPD. I don't know what to expect. I have my first visit with my Pulmonologist in November. I do my best to lean on my faith but there are days when I get overwhelmed with what's going to happen to me when it gets really bad since I live alone. Sometimes I'm scared to death of suffocating. Hopefully my Pulmonologist can help me understand this disease.

My family doesn't seem to take much of an interest in my disease. i've told them what I have but they never offer to help me with chores. I'm not one to ask for help either. Maybe I should start asking for that but I'm so stubborn. I've always felt that if they wanted to help they would just automatically do it. We were raised to take care of our elderly. The kids these days only think of themselves and they don't want to talk about it either. I think it scares them because they know it's not a curable disease. Do you have any of those kind of problems with your family members? And how do you handle the really bad days? I don't know what to expect? That's what I'd like to find out…..what to expect. Does it get bad quickly or gradually? Well, thanks for listening to me and thanks for sharing your part of your disease. God bless you and be at pease……Shirley

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First you need to know and let others know which branch of COPD you have. The reason for this is if it is emphysema they immediately take on the thought…."you smoke and got what you deserve", if it isn't then they need to know what it is. Have you been checked for Alpha-1, it is rare 1/2500, you can get a free test kit from Alpha1.org. Alpha1 is hereditary and can cause COPD. I am a carrier and a Dr at Mayo said I probably would have got it even if I didn't smoke, but the smoking didn't help. You need to learn about COPD…. a very good source is COPD.org. Yes, it is NOT curable and is progressive, but there are many things you can do to slow it down and make it easier to live with (pursed lip breathing when short of breath, respiratory therapy-medicare will cover 36 sessions). I moved my inhalers to nebulizers so they would be covered under medicare part B instead of part D.

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@waterboy

First you need to know and let others know which branch of COPD you have. The reason for this is if it is emphysema they immediately take on the thought…."you smoke and got what you deserve", if it isn't then they need to know what it is. Have you been checked for Alpha-1, it is rare 1/2500, you can get a free test kit from Alpha1.org. Alpha1 is hereditary and can cause COPD. I am a carrier and a Dr at Mayo said I probably would have got it even if I didn't smoke, but the smoking didn't help. You need to learn about COPD…. a very good source is COPD.org. Yes, it is NOT curable and is progressive, but there are many things you can do to slow it down and make it easier to live with (pursed lip breathing when short of breath, respiratory therapy-medicare will cover 36 sessions). I moved my inhalers to nebulizers so they would be covered under medicare part B instead of part D.

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Bill, WOW, this is information I had not heard about. Thank you so very much for reaching out to me. I'm starving for information like this and feel like a fish out of water. It seems like I've googled everything I can about COPD but still know nothing about it except that it's a lunch disease supposedly caused by smoking. What does a "branch" of COPD mean? I'll look that up on Google. I went into the hospital one time for bronchitis and suddenly I have COPD when I tell them I smoke. I hadn't had bronchitis in over 12 years. i felt like I was just a statistic. But I realize that I do have COPD. But now more questions to ask my Pulmonologist. Is that the kind of doctor you're referring to? I do have a nebulizer but I also use inhalers. I like the nebulizer. Where would I go to get the breathing treatments you spoke of? I haven't been able to stop smoking yet. My worst monster. Have you quit? If you have, how did you do it? I've cut back a lot but that's not quitting or helping. I'm sorry if I'm all over the board here. I'm just so overwhelmed. When I look back, I realize that I may have had this disease longer than I knew and I just ignored it. Which worries me because I could be at a later stage than I think I am. Bill, I can't thank you enough for the info you've given me. There's just so much to learn about this disease and I hope my Pulmonologist will be patient with me while I try and learn what this all means for me, other than death. Like how do I live with it. God give you peace through your battle. Thank you again.

Shirley

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@ppeschke

Robertjr I understand you saying that every day chores and activities have gotten to be too much. I am single and love alone so I have nobody to help get groceries or run errands or anything. My only support person is my sister but she has a very hectic life. You’re not alone!
I am wondering how can you get someone to understand your fatigue and some days just feeling sick? I feel her getting frustrated with me. I have declined rather quickly and I feel terrible having to ask her for help sometimes & I just feel a little like she thinks I’m just faking it at times.

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I don't know what state you live in but in Ohio we have Senior Options. They provide housekeeping and many other services. They are really wonderful. Depending on your income, you may only pay a very small percentage for their service. I would definitely see if your state has anything like this for you. Most states do. You could ask your doctor about it. He/she should know where to direct you. Sometimes even our own family is the last to want to help us. Their lives are more important than anyone else's. It's sad that our families are the last to help us.
Good luck and may God bring you peace.

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