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.

@merpreb

I'm glad that your insurance has covered the costs for your machines. Do you need to wake up at night and change or add water?

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Never eva

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In reply to @ronap "Never eva" + (show)
@ronap

These newer machines you don't ever have to add water.

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End stage COPD also. Room to room is tough I'm sposed to do oxygen 24/7. That's also hard. It is quite helpful. Makes level 4 tolerable. Just inconvenient…. But I suggest the Mayo clinic's mindful breathing lab. When it's available. Even with advanced COPD it did help. Most definitely worth a try. I put up using oxygen as long as I could for the fear of becoming dependent on it. And now that I'm using it I realize how much I needed it.

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@ronap

End stage COPD also. Room to room is tough I'm sposed to do oxygen 24/7. That's also hard. It is quite helpful. Makes level 4 tolerable. Just inconvenient…. But I suggest the Mayo clinic's mindful breathing lab. When it's available. Even with advanced COPD it did help. Most definitely worth a try. I put up using oxygen as long as I could for the fear of becoming dependent on it. And now that I'm using it I realize how much I needed it.

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Ron, I'm glad you mentioned Dr. Benzo's Mindful Breathing Lab. The Mayo team also publish a blog here on Mayo Clinic Connect, including videos to practice Mindful Breathing.

– Health and Mindfulness blog https://connect.mayoclinic.org/blog/mindfulness-in-health/

Are you finding ways to negotiate with the oxygen so that it's not so inconvenient?

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Hello all, I just want to add that there are currently home based interventions that can help in improve quality of life in people that have COPD. You may want to see the mindful breathing lab website and blog. There are options for home based mindful movements and health coaching. I wish you well.
https://connect.mayoclinic.org/blog/mindfulness-in-health/tab/resources/#ch-tab-navigation

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@ronap

End stage COPD also. Room to room is tough I'm sposed to do oxygen 24/7. That's also hard. It is quite helpful. Makes level 4 tolerable. Just inconvenient…. But I suggest the Mayo clinic's mindful breathing lab. When it's available. Even with advanced COPD it did help. Most definitely worth a try. I put up using oxygen as long as I could for the fear of becoming dependent on it. And now that I'm using it I realize how much I needed it.

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Good morning ronap- I understand all of these frustrations of having to schlep around a tank and being careful of where you go and what you do, but where did the idea of becoming addicted to breathing come from? We are all dependent on oxygen and given how unique we all are some of us need more than others. Where there is an illness or physical anomaly that prevents us from getting adequate oxygen then we need to supplement, right? If you don't supplement then it will affect your other body parts. That's a no-no!

Your doctor prescribed 24/7 oxygen for a reason and you are doing this. I'm so happy that you are feeling better!

You did mention the wonderful Dr. Benzo and his breathing lab at Mayo CLinic.
https://www.mayo.edu/research/labs/mindful-breathing/audio-files
Did you know that these are available by clicking on the link above?

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@ronap

End stage COPD also. Room to room is tough I'm sposed to do oxygen 24/7. That's also hard. It is quite helpful. Makes level 4 tolerable. Just inconvenient…. But I suggest the Mayo clinic's mindful breathing lab. When it's available. Even with advanced COPD it did help. Most definitely worth a try. I put up using oxygen as long as I could for the fear of becoming dependent on it. And now that I'm using it I realize how much I needed it.

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Ronap thank you for this post . I am on 24 hour oxygen as well and I am still getting use to this . I realized after my second ER trip that I must accept it as a 24 hour dependent & just knowing I have it helps with the anxiety a lot so it is great seeing another as yourself describing how I felt before . Blessings to you , Gregory

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Thank you Gregory for the encouraging words. I wish I could say this was easy but it is not.I I have always been the strong spiritual leader of our family's. it is hard to be reduced to helplessness. I say that with reserve and due respect to the many that are worse off than I. It is very easy to feel sorry for oneself. Due to my own circumstances in which I'm responsible for. Which was many years of carefree living. After reading many of these posts I realize how thankful I am for the health. that I have. This connect has been very encouraging and uplifting .. I thank our heavenly father and Lord for the many trained and knowledgeable doctors and technology that's available today. I I extend a heartfelt thanks to the wonderful doctors of today…

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@ronap

Thank you Gregory for the encouraging words. I wish I could say this was easy but it is not.I I have always been the strong spiritual leader of our family's. it is hard to be reduced to helplessness. I say that with reserve and due respect to the many that are worse off than I. It is very easy to feel sorry for oneself. Due to my own circumstances in which I'm responsible for. Which was many years of carefree living. After reading many of these posts I realize how thankful I am for the health. that I have. This connect has been very encouraging and uplifting .. I thank our heavenly father and Lord for the many trained and knowledgeable doctors and technology that's available today. I I extend a heartfelt thanks to the wonderful doctors of today…

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@ronap– When I was first diagnosed with lung cancer (1977) I compared what I went through with others. I learned that it's not helpful because everyone is so individual that it's impossible. What might be devastating to one person may not to another with the same thing. I didn't need chemo or radiation with that one but it didn't make my cancer any more or less than anyone else. It made me lucky. And I thought that I was missing the whole show if I had had chemo!

I confused my emotional healing and growth by doing this. No one is really more or less better off or worse off than anyone else. We all suffer in our own way. The most difficult thing for me was feeling reduced by being ill after a very active life. As you said, "it's hard to feel reduced". But that's our perception of not being active. Being ill isn't reducing, it's just illness. Its life interrupted and reducing thoughts like this help us be more mindful and save our energy to healing.

My first cancer was a horrible, fast-growing, early cancer. Ten years later I had a second type of cancer that still plagues me to this day. When one of my lesions grows I have to slap my self-pity back down because I really need that energy. I am in a different world, one in which I need help, where I am the center of my need and if I don't pay attention then I won't be able to help later on.

Does this make sense?

Merry

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@merpreb

@ronap– When I was first diagnosed with lung cancer (1977) I compared what I went through with others. I learned that it's not helpful because everyone is so individual that it's impossible. What might be devastating to one person may not to another with the same thing. I didn't need chemo or radiation with that one but it didn't make my cancer any more or less than anyone else. It made me lucky. And I thought that I was missing the whole show if I had had chemo!

I confused my emotional healing and growth by doing this. No one is really more or less better off or worse off than anyone else. We all suffer in our own way. The most difficult thing for me was feeling reduced by being ill after a very active life. As you said, "it's hard to feel reduced". But that's our perception of not being active. Being ill isn't reducing, it's just illness. Its life interrupted and reducing thoughts like this help us be more mindful and save our energy to healing.

My first cancer was a horrible, fast-growing, early cancer. Ten years later I had a second type of cancer that still plagues me to this day. When one of my lesions grows I have to slap my self-pity back down because I really need that energy. I am in a different world, one in which I need help, where I am the center of my need and if I don't pay attention then I won't be able to help later on.

Does this make sense?

Merry

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Yes this absolutely makes sense and very heartfelt and encouraging words. In comparison I feel weak compared to your strength.
Sometimes these trials make us strong in him

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@ronap

Yes this absolutely makes sense and very heartfelt and encouraging words. In comparison I feel weak compared to your strength.
Sometimes these trials make us strong in him

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Please don't feel that way. I've had years to come to terms with certain things, and as you know, feelings are never a constant. With cancer the roller coaster, after time, just takes longer to go up and down.

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@merpreb

Please don't feel that way. I've had years to come to terms with certain things, and as you know, feelings are never a constant. With cancer the roller coaster, after time, just takes longer to go up and down.

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@ronap– It's been a while since our last conversation. I'm writing to see how things are with you. I hope that you are feeling a little less "down" than the last time we wrote?

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