1. < COPD: Chronic obstructive pulmonary disease

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 Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 21, 2021
In reply to @tuffstuff222 "Hi everyone, i haven't been writing lately sometimes just get down. I sleep a lot, don't..." + (show)
@tuffstuff222

Hi everyone, i haven't been writing lately sometimes just get down. I sleep a lot, don't sleep well at night. End up in the recliner. If any of you can get a lung transplant I am happy for you. My doctor told me i have too may issues that they would not even consider it. My congestive heart failure fights against my COPD. I am like some of you my family has no clue how bad this can get. I live alone like many of you and sometimes at night i wonder if i will see morning come. My daughter realizes how bad this is, she went with me to the doctor and she was shocked. My pulmonary doctor told me to get my things in order. My daughter thought I was being morbid about this. I let her read the email that i asked my doctor not to sugar coat but to be upfront with me with answers and he did give them to me. I wanted to know what was coming i did not want to be taken by surprise. But each of your cases are different. Remember to talk to your doctor and they will be honest with you. Some of you have lesser cases which is good and your time can be extended. Just follow what your doctors say. I have a heart doctor and a pulmonary doctor. I am not losing weight but I am gaining weight. I keep retaining fluids in my feet and legs and fluid in my lungs. I am not wanting to go to the ER anymore. I have been there 4 times this year and do not really want to go back, I hear all of you and I am glad i can talk freely with you guys. It is a blessing to know all of you. TuffStuff

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You certainly are tough stuff, TuffStuff. I’m similar to you in that I like to know things without sugarcoating. For me knowledge helps me prepare and be realistic in my planning and how I frame hope. This doesn’t mean without hope, just where I put my efforts. My dad differs from me and wants to only know that absolute necessary. He knew the reality of his condition, but preferred not to talk about it or be reminded of it, which is what information meant he would have to do.

Now that your daughter understand more about COPD and the progression of disease, have you been able to have heart-to-heart talks?

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gregoryz | @gregoryz | Oct 21, 2021

Hi everyone. Just read several post here & wanted to say thank you all for sharing . I recently found out I have stage 3 COPD. I quit smoking only 6 months prior but still have guilt plus a million questions . I am on oxygen plus meds & the one thing all of this has done for me is freed me to be so open, honest & receptive where the pre me was so reserved I was not taking advantage of those small things in life & the freedoms of air . I moved about my entire life in a fast pace & this as you know stopped me cold . I do hold to my faith in God & am only human trying to comprehend . Be blessed all & again thank each of you for sharing . Gregory

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Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 27, 2021
In reply to @gregoryz "Hi everyone. Just read several post here & wanted to say thank you all for sharing..." + (show)
@gregoryz

Hi everyone. Just read several post here & wanted to say thank you all for sharing . I recently found out I have stage 3 COPD. I quit smoking only 6 months prior but still have guilt plus a million questions . I am on oxygen plus meds & the one thing all of this has done for me is freed me to be so open, honest & receptive where the pre me was so reserved I was not taking advantage of those small things in life & the freedoms of air . I moved about my entire life in a fast pace & this as you know stopped me cold . I do hold to my faith in God & am only human trying to comprehend . Be blessed all & again thank each of you for sharing . Gregory

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Welcome Gregory. I'm glad you found us. First of all, congrats on quitting smoking. That's not easy. How did you do it?

Also, congrats on being open to share for your health and to help others, as well as to ask questions.

@tuffstuff222 @mamawnebel @waterboy @baz10 @ronap @djallan @fracturedd @lauriesmartin are just a few of the members who are travelling this same path.

How are you doing on medication and oxygen? Do you have supportive people around you?

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1 reply
baz10 | @baz10 | Oct 27, 2021
In reply to @rits "What channel is that tv program on? I would like to check it out." + (show)
@rits

What channel is that tv program on? I would like to check it out.

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Body & Spirit is on the 3ABN Christian Network.

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gregoryz | @gregoryz | Oct 28, 2021
In reply to @colleenyoung "Welcome Gregory. I'm glad you found us. First of all, congrats on quitting smoking. That's not..." + (show)
@colleenyoung

Welcome Gregory. I'm glad you found us. First of all, congrats on quitting smoking. That's not easy. How did you do it?

Also, congrats on being open to share for your health and to help others, as well as to ask questions.

@tuffstuff222 @mamawnebel @waterboy @baz10 @ronap @djallan @fracturedd @lauriesmartin are just a few of the members who are travelling this same path.

How are you doing on medication and oxygen? Do you have supportive people around you?

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Hi & thanks Colleen , I can only say i stopped once I saw the word palliative on a medical folder it freaked me out & I was one that just felt they would blame me for smoking so I just went cold turkey and after the initial feel & fear of suffocating before landing in ER . I have been fine on my medication & oxygen plus my doctors have been amazing .My first few days home from hospital were very scary with the anxiety but i pace it . I am in no pain but am finally realizing my limits . I have very bad days but I also have some good days ha ha . I think the word death is what finally hit me & thinking of all the mysteries it holds could overwhelm so I just try hard to live each moment , minute in humor with appreciation . Tomorrow may be terrible but at the moment life is good . p.s. I am still getting use to the oxygen hose which can really be humorous .

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 29, 2021
In reply to @gregoryz "Hi & thanks Colleen , I can only say i stopped once I saw the word..." + (show)
@gregoryz

Hi & thanks Colleen , I can only say i stopped once I saw the word palliative on a medical folder it freaked me out & I was one that just felt they would blame me for smoking so I just went cold turkey and after the initial feel & fear of suffocating before landing in ER . I have been fine on my medication & oxygen plus my doctors have been amazing .My first few days home from hospital were very scary with the anxiety but i pace it . I am in no pain but am finally realizing my limits . I have very bad days but I also have some good days ha ha . I think the word death is what finally hit me & thinking of all the mysteries it holds could overwhelm so I just try hard to live each moment , minute in humor with appreciation . Tomorrow may be terrible but at the moment life is good . p.s. I am still getting use to the oxygen hose which can really be humorous .

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I love how you find humor in the oddest of places. Good for you. Stay focused on the good days. They're worth it.

REPLY
melrscott | @melrscott | Oct 30, 2021
In reply to @mamawnebel "I've just been diagnosed with COPD. I don't know what to expect. I have my first..." + (show)
@mamawnebel

I've just been diagnosed with COPD. I don't know what to expect. I have my first visit with my Pulmonologist in November. I do my best to lean on my faith but there are days when I get overwhelmed with what's going to happen to me when it gets really bad since I live alone. Sometimes I'm scared to death of suffocating. Hopefully my Pulmonologist can help me understand this disease.

My family doesn't seem to take much of an interest in my disease. i've told them what I have but they never offer to help me with chores. I'm not one to ask for help either. Maybe I should start asking for that but I'm so stubborn. I've always felt that if they wanted to help they would just automatically do it. We were raised to take care of our elderly. The kids these days only think of themselves and they don't want to talk about it either. I think it scares them because they know it's not a curable disease. Do you have any of those kind of problems with your family members? And how do you handle the really bad days? I don't know what to expect? That's what I'd like to find out.....what to expect. Does it get bad quickly or gradually? Well, thanks for listening to me and thanks for sharing your part of your disease. God bless you and be at pease......Shirley

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It is a difficult disease. I have been dealing with it for almost 20 years. It is getting bad now. Keep exercising as much as you can for as long as you can. Try very hard to not get sick. For me every time I got sick it moved into my lungs. Each time it took me down to a new lower level. It is very difficult to get people to understand what you go through. They don't have a clue. It changes from hour to hour sometimes it is not so bad and others can't catch my breath. Showering and dressing are a challenge. My wife is an angel but she is wearing down now that it is more difficult for me to help with very much. The hardest part is that you know it will never get better and that this is the best you will feel

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tuffstuff222 | @tuffstuff222 | Oct 30, 2021

Hi everyone, would rather not hear that there are so many people that are suffering from COPD. Me and my daughter have come to terms with he disease and it has been hard, but this is real life and as one of you has said life and being able to breath is precious. I sometimes get down, but you have to keep coming back each time a little stronger. Life is precious and we should live every day like it is out last and love and enjoy every moment with your kids and family and friends. Hope all of you are doing well for Thanksgiving. God bless and keep you all.

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gregoryz | @gregoryz | Nov 1, 2021

Hi all , I am having a lot of issues with my throat feeling as if it swells as well as my voice giving out and really weak . I have tried online research but it is nothing , I can swallow but i find i am not able to swallow as much at once that i could before and my voice gets weak .The symptom is as if I am trying to clear my throat . I am not giving in but getting tired of excusing myself so much lol. Copd is one strange disease for sure . Blessings to all, Gregory

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uncdick | @uncdick | Nov 1, 2021

Try drinking lemon with a bit of honey. I squeeze a bunch of lemons and freeze the juice in ice cube trays. I put one cube in a cup of hot water with a bit of honey for my husband. It seems to help him.

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