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.

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Hi everyone. I had a very nice Thanksgiving but only with my daughter, son in law and my grandson.
I thank God every night that I had another day. It is really getting hard to shop and exercise is really bad. I can't catch my breath. I am still driving and shopping even though it is getting very hard. I am afraid if I stop I won't be able to go. I feel I have to keep moving.
Hope everyone had a great holiday and hope everyone's Christmas is filled with love. LOL

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@tuffstuff222

Hi everyone. I had a very nice Thanksgiving but only with my daughter, son in law and my grandson.
I thank God every night that I had another day. It is really getting hard to shop and exercise is really bad. I can't catch my breath. I am still driving and shopping even though it is getting very hard. I am afraid if I stop I won't be able to go. I feel I have to keep moving.
Hope everyone had a great holiday and hope everyone's Christmas is filled with love. LOL

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I'm also a level four COPD end of life. That sounds really harsh doesn't it. I have no one to blame but myself. I have many years of carefree living. At this point I can't walk across the room without stopping to rest. I also have an inogen oxygen mixer. I'm trying to learn how to use it and how to carry it as it is quite heavy and awkward. I also use a CPAP machine with an overflow oxygen machine in the evenings I did the mindful breathing techniques with the Mayo clinic which was quite helpful. I did one other program with the Mayo clinic and it was very supportive and helpful. I also have a home nebulizer and do treatments. Periodically. I have good days and bad days. I can only think our heavenly father Jesus Christ that I'm still walking and talking. I have a loving family and very supportive I would like to suggest and recommend that you never give in and you never give up.

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@ronap

I'm also a level four COPD end of life. That sounds really harsh doesn't it. I have no one to blame but myself. I have many years of carefree living. At this point I can't walk across the room without stopping to rest. I also have an inogen oxygen mixer. I'm trying to learn how to use it and how to carry it as it is quite heavy and awkward. I also use a CPAP machine with an overflow oxygen machine in the evenings I did the mindful breathing techniques with the Mayo clinic which was quite helpful. I did one other program with the Mayo clinic and it was very supportive and helpful. I also have a home nebulizer and do treatments. Periodically. I have good days and bad days. I can only think our heavenly father Jesus Christ that I'm still walking and talking. I have a loving family and very supportive I would like to suggest and recommend that you never give in and you never give up.

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@ronap; @tuffstuff222– Welcome to Mayo Clinic Connect. I am trying to catch up on posts from being away for a bit. I also have COPD and caused it myself as a result of heavy smoking for far too long. I know what you mean by doing this to myself and feeling guilty. I do not understand what it means to forgive myself but I have moved on from thinking about my causing this.

@tuffstuff222 it is great that you keep on moving forward, no matter how hard it is. I agree with @ronap that keeping on trucking is the way to go, and you are.

@ronap– I know that each step can feel like 20 but as long as you can take a step, keep it up.

My Pulmonologist has switched me to a Trelegy Ellipta inhaler. Has either of you been offered this?

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@merpreb

@ronap; @tuffstuff222– Welcome to Mayo Clinic Connect. I am trying to catch up on posts from being away for a bit. I also have COPD and caused it myself as a result of heavy smoking for far too long. I know what you mean by doing this to myself and feeling guilty. I do not understand what it means to forgive myself but I have moved on from thinking about my causing this.

@tuffstuff222 it is great that you keep on moving forward, no matter how hard it is. I agree with @ronap that keeping on trucking is the way to go, and you are.

@ronap– I know that each step can feel like 20 but as long as you can take a step, keep it up.

My Pulmonologist has switched me to a Trelegy Ellipta inhaler. Has either of you been offered this?

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Wanted you to see this….

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Wanted you to see this….can inherit the chromosome for lung disease whether you ever smoked or not…. smoking makes it progress sooner yes

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Read this….don't beat yourself up

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@southerncharm

Read this….don't beat yourself up

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Thank you, @southerncharm. I did know this, but thank you for refreshing my memory.
Merry

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@merpreb

@ronap; @tuffstuff222– Welcome to Mayo Clinic Connect. I am trying to catch up on posts from being away for a bit. I also have COPD and caused it myself as a result of heavy smoking for far too long. I know what you mean by doing this to myself and feeling guilty. I do not understand what it means to forgive myself but I have moved on from thinking about my causing this.

@tuffstuff222 it is great that you keep on moving forward, no matter how hard it is. I agree with @ronap that keeping on trucking is the way to go, and you are.

@ronap– I know that each step can feel like 20 but as long as you can take a step, keep it up.

My Pulmonologist has switched me to a Trelegy Ellipta inhaler. Has either of you been offered this?

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I have just changed from in Cruise elipita to trilogy. I really haven't noticed much of a change in my breathing abilities at this point I guess I really can't say that it helped

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@ronap

I have just changed from in Cruise elipita to trilogy. I really haven't noticed much of a change in my breathing abilities at this point I guess I really can't say that it helped

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@ronap– Trelegy Ellipta has a corticosteroid and a selective long-acting beta2-adrenergic agonist (LABA). (you can look this up if you want.) The Incruse Ellipta does not have these added benefits. Please be patient and let these new ingredients work. They will build up in your system slowly and you hopefully will see their benefits in the near future. Unfortunately, some medications just take longer to work.

Since you do have advanced COPD you will still have breathing problems, but keep on moving! Perhaps your moving will become easier and one day you will notice and say, "Hey, I just walked longer than I have in a long time."

How do you do at night?

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@merpreb

@ronap– Trelegy Ellipta has a corticosteroid and a selective long-acting beta2-adrenergic agonist (LABA). (you can look this up if you want.) The Incruse Ellipta does not have these added benefits. Please be patient and let these new ingredients work. They will build up in your system slowly and you hopefully will see their benefits in the near future. Unfortunately, some medications just take longer to work.

Since you do have advanced COPD you will still have breathing problems, but keep on moving! Perhaps your moving will become easier and one day you will notice and say, "Hey, I just walked longer than I have in a long time."

How do you do at night?

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Thank you for the comments and reply. At night I use a CPAP machine with added oxygen concentrator.

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@ronap

Thank you for the comments and reply. At night I use a CPAP machine with added oxygen concentrator.

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@ronap– Good morning. I haven't as yet had to use any machines to help my breathing. Have you used other machines? Did they work well?

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@merpreb

@ronap– Good morning. I haven't as yet had to use any machines to help my breathing. Have you used other machines? Did they work well?

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My inogen portable machine does well. It is heavy and I use for a liters and that only lasts about 3 hours.
I have ever flo machine it also does the job in the home. It is big and bulky and noisy but I would hate to be without it. Medicare has covered the lease on both of these machines

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