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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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punkybauer | @punkybauer | Mar 5 11:17am
In reply to @crystalena "@hicopd These comments I am reading are from a year ago. They still deal with things..." + (show)
Profile picture for crystalena @crystalena

@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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@crystalena When I get fits of coughing because of sticky phlegm i drink water bring my body forward a bit and try to wait rather than force the phlegm out. I understand the more we try to force it out the deeper it goes and the worse it gets. It is a miserable situation! I also take Geri-tussin and if it is real bad I will turn on the steamy shower and breath it in. anything to loosen its grip on me. Oh and I also have used saline spray.

hope these ideas help
Punky

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crystalena | @crystalena | Mar 6 8:17am
In reply to @punkybauer "@crystalena When I get fits of coughing because of sticky phlegm i drink water bring my..." + (show)
Profile picture for punkybauer @punkybauer

@crystalena When I get fits of coughing because of sticky phlegm i drink water bring my body forward a bit and try to wait rather than force the phlegm out. I understand the more we try to force it out the deeper it goes and the worse it gets. It is a miserable situation! I also take Geri-tussin and if it is real bad I will turn on the steamy shower and breath it in. anything to loosen its grip on me. Oh and I also have used saline spray.

hope these ideas help
Punky

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@punkybauer I drink water. I see that I should have tried to stifle the cough . No worries on the meds . I take mine . Thanks for the advice ♥️. Crystalena

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kdny | @kdny | Mar 6 8:56am

More tips on handling emphysema are appreciated! I have found that nasal navage, even just with water, helps my sinuses stay clear, which was what contributed to my hospital stay several years ago. I also take 400 mg guafinesin as needed at bedtime, it seems to help. Keeping the mucus thinned out and expectorating helps. I also attend pulmonary rehab three days a week and exercise at home the other days. An inexpensive walking treadmill is only about $100 and is handy to have when weather is not great for walking outdoors. I have severe emphysema and also severe pulmonary hypertension, so I'm doing all I can to stay as well as possible. Using your oxygen, masks if around crowds, and just being aware of how you are feeling can help you to manage day to day. Try to eat healthy and get enough water/fluids. There are several good books you can read about dealing with COPD also. Good luck and God Bless!! P.S. Having good doctors helps a LOT!!

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tjphillipp | @tjphillipp | Mar 7 8:56am
In reply to @kllevinson "I am in stage four also emphysema COPD. I saw my doctor today and my FEV..." + (show)
Profile picture for kllevinson @kllevinson

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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I’m considering Zephyr valves that they put in the lungs to stop the emphysema. Ever hear of them? I’ve read about people that have and they claim they really work. Talk to your pulmonologist. Good luck

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kllevinson | @kllevinson | Mar 7 10:33am
In reply to @tjphillipp "I’m considering Zephyr valves that they put in the lungs to stop the emphysema. Ever hear..." + (show)
Profile picture for tjphillipp @tjphillipp

I’m considering Zephyr valves that they put in the lungs to stop the emphysema. Ever hear of them? I’ve read about people that have and they claim they really work. Talk to your pulmonologist. Good luck

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@tjphillipp I have heard of them, but in my case, it would not help. Good luck with yours. I know a lot of people have had success with them.

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capnjack | @capnjack | Mar 7 10:53am
In reply to @tjphillipp "I’m considering Zephyr valves that they put in the lungs to stop the emphysema. Ever hear..." + (show)
Profile picture for tjphillipp @tjphillipp

I’m considering Zephyr valves that they put in the lungs to stop the emphysema. Ever hear of them? I’ve read about people that have and they claim they really work. Talk to your pulmonologist. Good luck

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@tjphillipp My pulmo. guy says that they're (zephyr valves) only effective in the upper lobes, and then just moderately successful, while my issues are in lower lobes, so, nope. Meanwhile, I'm going later this month for a screening for a clinical trial of the Apreo device - clinical trial "BREATHE 3", which places little nitinol scaffolds (little spring-like gadgets) deep in your lungs, supposed to allow trapped air to escape. We'll see.

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tjphillipp | @tjphillipp | Mar 7 11:05am
In reply to @kllevinson "@tjphillipp I have heard of them, but in my case, it would not help. Good luck..." + (show)
Profile picture for kllevinson @kllevinson

@tjphillipp I have heard of them, but in my case, it would not help. Good luck with yours. I know a lot of people have had success with them.

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@kllevinson
Thank you!

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jlk12 | @jlk12 | Mar 7 3:34pm
In reply to @jamecline "I rarely cough or produce mucus anymore I am stage lV anyone know why" + (show)
Profile picture for jamecline @jamecline

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

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@jamecline same here. I don’t cough and very seldom bring up mucus.

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tjphillipp | @tjphillipp | Mar 7 3:42pm
In reply to @capnjack "@tjphillipp My pulmo. guy says that they're (zephyr valves) only effective in the upper lobes, and..." + (show)
Profile picture for capnjack @capnjack

@tjphillipp My pulmo. guy says that they're (zephyr valves) only effective in the upper lobes, and then just moderately successful, while my issues are in lower lobes, so, nope. Meanwhile, I'm going later this month for a screening for a clinical trial of the Apreo device - clinical trial "BREATHE 3", which places little nitinol scaffolds (little spring-like gadgets) deep in your lungs, supposed to allow trapped air to escape. We'll see.

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@capnjack
Good luck and let us know if it works for you. Thanks

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joycecates | @joycecates | Mar 8 5:57am
In reply to @punkybauer "@crystalena When I get fits of coughing because of sticky phlegm i drink water bring my..." + (show)
Profile picture for punkybauer @punkybauer

@crystalena When I get fits of coughing because of sticky phlegm i drink water bring my body forward a bit and try to wait rather than force the phlegm out. I understand the more we try to force it out the deeper it goes and the worse it gets. It is a miserable situation! I also take Geri-tussin and if it is real bad I will turn on the steamy shower and breath it in. anything to loosen its grip on me. Oh and I also have used saline spray.

hope these ideas help
Punky

Jump to this post

@punkybauer I did not know that trying to force out the phlegm makes it get deeper and worse. Thank you for sharing that. I will try what you are doing. I always try to force the phlegm out. Did not realize it made it worse. Bless you.

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