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I don't want to get out of bed anymore.

I have reached the point in my emphysema where I just don't want to get out of bed. Any movement like trying to sit up or reaching for something leaves me gasping for breath. I have been through the gambit of medications that work for a while but stop working within a short period of time. I also was a candidate for the Zepher valve, but due to possible side effects, including death, I turned it down. I do feel like I not only want to stay in bed, doing anything but that causes painful gasping. Anyone where I am with this disease?

  1. Hi , I hear how difficult it is to feel like you want to do anything when it causes such shortness of breath. I am confident others in our community will chime in if they have a shared experience. Wishing you a peaceful day. All the best, Sam S. (COPD.net, team member).

    1. Thank you

  2. I feel your frustration and concern being so breathless. Everytime I get an infection I go through the same struggles as you mentioned. Then life turns into slowing everything down to small movements. Water bottle, inhaler, and pulse oximetre on my bedside table so I can pulse lip breathe to sit up. Then stop however many times as needed to make it to the washroom. This is the tiny steps to achieve the minimum things I need to do for the day. I found with my End stage COPD that there are wonderful people here all supporting each other. I hope you have a gentle day and

    1. I am recuperating from a major exacerbation, and have been there for weeks, after the hospital. No one can appreciate normal life more than someone who has to sit down between brushing and flossing. All the best.

    2. You're very kind. I am so sorry you are suffering too. I hope for everyone that something is found to cure this awful disease. I really do.

  3. Let me be a little cheerleader for you. I had the endobronchial valves installed two years ago. I am a 73 year-old woman, stage 4 COPD, and I was on oxygen 24/7 for three years. My pulmonologist has done several dozen since mine, which was the third he had done, and all had good results. One man had him remove them, because they sometimes make a little whistling sound.
    I would give it a hearty two thumbs up. So many people want to have them, but their conditions are not right. I would re evaluate the decision. They will add years to your life. After a month I was not using oxygen most of the day. The improvement continued for several months, and normally I now use oxygen only for sleeping. Please think about pursuing it. They have been FDA certified for public use for three years, and only covid has stopped doctors from doing the procedure. There is no surgery, so no recovery time.
    Life can be so much better! Please let me know what you decide. I would be about exactly where you are, had I not had the valves installed. They said I had bout a year until hospice.

    1. Thank you, and I wish only the best for you.

    2. Thnks. Prayers help, too.

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