What questions would you ask your Dr about stage 4 COPD?

Posted by lesleys56 @lesleys56, Jan 12, 2025

I've asked my Dr questions about prognosis and he seems reluctant to answer questions. I get the feeling it's because he doesn't want me to worry but instead, stay positive. How can I stay positive if my questions aren't answered? That only makes me get into my head.

What questions would you ask your Dr?

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I asked him about lung pain and about the best way to regulate my air . Discuss sputum . He is kind of just holding my hand here . I am stage 4 and 79 . I don’t know, just like most of us what my exact prognosis is . I don’t know how long I will survive with this . I do know that I am going to do the best I can to feel the best I can . I am going to live the rest of my life . There are a lot of younger people that will pass before I do . It depends on the card one drew . Then there is always the bus! So no worries . Live every day !
Blessed Be, Crystalena

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Profile picture for crystalena @crystalena

I asked him about lung pain and about the best way to regulate my air . Discuss sputum . He is kind of just holding my hand here . I am stage 4 and 79 . I don’t know, just like most of us what my exact prognosis is . I don’t know how long I will survive with this . I do know that I am going to do the best I can to feel the best I can . I am going to live the rest of my life . There are a lot of younger people that will pass before I do . It depends on the card one drew . Then there is always the bus! So no worries . Live every day !
Blessed Be, Crystalena

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Thank you. I needed to hear your response. Thank you so very much.

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I rarely cough or produce mucus anymore I am stage lV anyone know why

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Did you ask your pulmonologist? I am stage 4 . Actually, I was diagnosed with stage 4. Anyway, I didn't have any mucus before that . I take Musinex 1200 every twelve hours to help me clear it now. That is important that mucus comes up and out . And I do drink lots of water . You might try this method.( . I am not a Doctor. )Talk to your Doctor . Blessed Be , Crystalina

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My docs told me in 2000 to get my affairs in order as my FEV1 (how much air you can blow out in 1st second after full breath) was about 30% of predicted. I’m still about 30% now, 25 years later so no sense getting worked up about dire predictions.

I’d ask whether you can get referred to a pulmonary rehab program to learn more and get a customized exercise program to help you best condition your muscles safely because conditioned muscles use O2 much more efficiently than deconditioned muscles. They cover lots of education as well and can review your meds and be sure you’re taking them optimally.

If you’re on supplemental O2, they can help you adjust it to your needs & activity level (I have to turn mine up to exercise safely and use it for elevation & travel as well).

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I am in stage four also emphysema COPD. I saw my doctor today and my FEV one is 24%. He said if I get more infections, I would probably go to Hospice but right now I am OK. I haven’t been sick since last Summer. I know prognosis is hard when you have copd. I guess I would just ask him about the best way to relieve the symptoms that you’re having for me. It’s extreme shortness of breath or SOB. I’m on Oxygen 4 L down from 5 L 24 seven
Hope you have a good appointment. Thank you for posting. Hugs. K.

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Profile picture for hicopd @hicopd

My docs told me in 2000 to get my affairs in order as my FEV1 (how much air you can blow out in 1st second after full breath) was about 30% of predicted. I’m still about 30% now, 25 years later so no sense getting worked up about dire predictions.

I’d ask whether you can get referred to a pulmonary rehab program to learn more and get a customized exercise program to help you best condition your muscles safely because conditioned muscles use O2 much more efficiently than deconditioned muscles. They cover lots of education as well and can review your meds and be sure you’re taking them optimally.

If you’re on supplemental O2, they can help you adjust it to your needs & activity level (I have to turn mine up to exercise safely and use it for elevation & travel as well).

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What do you account for your fev1 not changing after all those years ?

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My FEV1 has decreased as I aged but has managed to stay about 30% of predicted. I’ve never smoked and not been exposed to lung irritants so no one even knows why I have emphysema in the 1st place. I’m glad I’ve stayed pretty stable and do my best to exercise and stay healthy.

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Profile picture for hicopd @hicopd

My docs told me in 2000 to get my affairs in order as my FEV1 (how much air you can blow out in 1st second after full breath) was about 30% of predicted. I’m still about 30% now, 25 years later so no sense getting worked up about dire predictions.

I’d ask whether you can get referred to a pulmonary rehab program to learn more and get a customized exercise program to help you best condition your muscles safely because conditioned muscles use O2 much more efficiently than deconditioned muscles. They cover lots of education as well and can review your meds and be sure you’re taking them optimally.

If you’re on supplemental O2, they can help you adjust it to your needs & activity level (I have to turn mine up to exercise safely and use it for elevation & travel as well).

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@hicopd These comments I am reading are from a year ago. They still deal with things I want to ask folks about . I have been stage 4 Enphysema since June of 2023 . That was my first diagnosis of a breathing problem . I was put on 24/7 oxy at 4 ltrs immediately . I have remained on 4 ltrs since then. I have also been on Trelegy 200 since that day. I haven’t had much change , except that at 4 ltrs, with movement , I can easily burn down to 82-84 . I do sit down . Let my oxy return to 90 or 92 . Commit to slowing myself again , and move on . I had a coughing incident yesterday . I was up for 2 hours , trying to raise phlegm . This morning my throat is swollen and extremely tender to touch at the front of my neck . I took a large tablet this morning and had to eat bread for a bit to get it to go on down from the back of my throat . Well , I described all I can . Any one experience anything like this . I have covered the area on my neck with Vicks vapor rub. Also had heat on it … Cheers!! I love you all , and send good wishes . Blessed Be, Crystalena

on the front of my neck.

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Profile picture for hicopd @hicopd

My FEV1 has decreased as I aged but has managed to stay about 30% of predicted. I’ve never smoked and not been exposed to lung irritants so no one even knows why I have emphysema in the 1st place. I’m glad I’ve stayed pretty stable and do my best to exercise and stay healthy.

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@hicopd perhaps you have Alpha-1 Antitrypsin Deficiency (AATD): This is a hereditary condition where the liver does not produce enough of the AAT protein to protect the lungs. just a thought.

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