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 Support Group.

@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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COPD has two main "branches" Emphysema and Bronchitis, only your Dr should advise you what you have, a pulmonologist would be better, they specialize in respiratory illnesses. Yes, I smoked, but quit before I knew I had COPD... I used laser treatments, like accupuncture w/o needles. You MUST quit, yes I smoked for over 40 yrs and felt it was my right my body, so I know where you are.... my sister is there now too. The hardest thing to quitting is making up your mind that you HAVE TO QUIT.

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im 65 and dying with copd. very hard for me i get worsze sometimes by the day i had the covid a yr ago i have not had vax i know it could be worse.

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@waterboy

COPD has two main "branches" Emphysema and Bronchitis, only your Dr should advise you what you have, a pulmonologist would be better, they specialize in respiratory illnesses. Yes, I smoked, but quit before I knew I had COPD... I used laser treatments, like accupuncture w/o needles. You MUST quit, yes I smoked for over 40 yrs and felt it was my right my body, so I know where you are.... my sister is there now too. The hardest thing to quitting is making up your mind that you HAVE TO QUIT.

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i smoked cig and weed for ever the only thing that delivered me was the strength of jesus christ

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@ronap

i smoked cig and weed for ever the only thing that delivered me was the strength of jesus christ

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when u have reached bottom give me a holla ill share this christ with u

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@mamawnebel

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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Hello, Shirley,
First, any new diagnosis, especially a chronic and incurable one like COPD, is scary and overwhelming. But, people can live,for quite q long and productive time with it, if they control the symptoms and work to stay healthy.
Here is a great place to start reading about COPD: https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679 And copd.foundation.org
Knowledge is power!
To answer a few of your questions, your breathing treatments are delivered through your nebulizer, and the medications you inhale will be based on your condition, and any infections you may have. Yes, the pulmonologist is the right doctor to treat your condition. Quitting smoking is HARD, but as a nonsmoker I am sorry, not to have suggestions. Cutting down is a great start- the next step is to figure.out what program or method will work for you . Here is Mayo's guide. https://www.mayoclinic.org/healthy-lifestyle/quit-smoking/basics/quitsmoking-basics/hlv-20049487
Feel free to come back and ask any and every question you have. The people on Connect are awesome at sharing their experiences and feelings.
Sue

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@sueinmn

Hello, Shirley,
First, any new diagnosis, especially a chronic and incurable one like COPD, is scary and overwhelming. But, people can live,for quite q long and productive time with it, if they control the symptoms and work to stay healthy.
Here is a great place to start reading about COPD: https://www.mayoclinic.org/diseases-conditions/copd/symptoms-causes/syc-20353679 And copd.foundation.org
Knowledge is power!
To answer a few of your questions, your breathing treatments are delivered through your nebulizer, and the medications you inhale will be based on your condition, and any infections you may have. Yes, the pulmonologist is the right doctor to treat your condition. Quitting smoking is HARD, but as a nonsmoker I am sorry, not to have suggestions. Cutting down is a great start- the next step is to figure.out what program or method will work for you . Here is Mayo's guide. https://www.mayoclinic.org/healthy-lifestyle/quit-smoking/basics/quitsmoking-basics/hlv-20049487
Feel free to come back and ask any and every question you have. The people on Connect are awesome at sharing their experiences and feelings.
Sue

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Sue, I can't thank you enough for your comments and all the helpful information you've provided in your note to me. I'm soaking everything in like a sponge. I have an enormous amount of phlegm in my lungs. Will the breathing treatments help to reduce that? I take a lot of Mucinex but it doesn't seem to help. I was only doing the breathing treatments while I had bronchitis. Should I be doing those every day? Having not seen the specialist yet, I'm not sure what I should be doing. And my nose runs all the time!! What's up with that?!! In the morning when I get up I sound like I'm drowning in mucus but once I cough it all up I sound a little better. I'm not real short of breath yet and I don't need oxygen yet. I keep a check on my O2 level and so far it stays in the 90s. It's all the unknowns about this disease that worries me. I've read some scary stuff on the internet and I've finally stopped reading about it now that I've found this group. But I am definitely going to go on the links you provided in your note and see what they have to say. I'm desperate to find a way to quite smoking. And I appreciate the link on learning about COPD. Seems like when I Google COPD I get everything under the sun but nothing that I'm looking for. Thanks again, Sue, and I pray you are in a good place and feeling well. Be at peace.

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FYI Chantix is what I used to quit smoking. You have to get a prescription, but it does work. I smoked off & on for 30 years. I am 73 yrs old and I have stage 4 COPD and many other issues that are not good. I decided to quit smoking 16 years ago and my doctor gave me Chantix. I do not know how this drug works but it goes to the portion of your brain that hungers for that cigaret. It does work and you will be surprised just how it does turn off the urge for cigarets. There are a few side effects but it does effect everyone different. It made me dream a lot. After a couple of weeks I only took the pill in the morning instead of 2 times a day. It is worth a try. I gave it up because I was going to be a grandma and I did not want to be a smoker in front of him. He is 16 yrs old now and a great kid. My theory is to FIGHT till the end,
Let God quide you and you will be OK. I treasure every morning and sunset. I enjoy my daughter and son in law and Noah. They make me so happy to have them in my life along with Jesus who will see us all thru
God Bless

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@tuffstuff222

FYI Chantix is what I used to quit smoking. You have to get a prescription, but it does work. I smoked off & on for 30 years. I am 73 yrs old and I have stage 4 COPD and many other issues that are not good. I decided to quit smoking 16 years ago and my doctor gave me Chantix. I do not know how this drug works but it goes to the portion of your brain that hungers for that cigaret. It does work and you will be surprised just how it does turn off the urge for cigarets. There are a few side effects but it does effect everyone different. It made me dream a lot. After a couple of weeks I only took the pill in the morning instead of 2 times a day. It is worth a try. I gave it up because I was going to be a grandma and I did not want to be a smoker in front of him. He is 16 yrs old now and a great kid. My theory is to FIGHT till the end,
Let God quide you and you will be OK. I treasure every morning and sunset. I enjoy my daughter and son in law and Noah. They make me so happy to have them in my life along with Jesus who will see us all thru
God Bless

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God bless you for not giving up. Our family does give us a reason to go on and The Good Lord does give us that strength doesn't He? Unfortunately, Chantix was recalled and not sure if it will ever go back on the market. Sad because I used it to quit in 2001. But like an idiot I started up again after 2.5 years of non-smoking. I'm trying to wean myself off. Somedays are better than others. Do you mind telling me what complications go with Stage 4? I have no idea what stage I'm in yet or what to look for. I've just been diagnosed with COPD but I have no idea how long I've had it. I'm just so anxious to hear what other people face and how they handle it so I'll know how to face them too. Thank you for reaching out to me. You have not idea how much I love hearing from people like you that have strong faith and how they work their life with this disease. God bless you and continue enjoying your grandchildren. My Lord and my granddaughters are my life and my joy

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