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.

Hi @rits The Functional Fitness program is on one of the PBS stations, and the Body & Spirit is on one of the Christian stations and I see it at 7:00 am and the other one is on at 8:00 am here in Indiana. baz10

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@waterboy

We had to replace our furnace. I looked into a multi stage unit, new AC, a ventilator, a air purifier, a web enabled control, and putting our house into four separate zones. The installation isn’t completed yet, waiting for the zone card. It is an all Bryant system (Evolution). and it is not cheap….. but if it saves one trip to the ER, it will be worth it. Too early to tell. I have a finger oximeter, that can record 24 hrs… then print out a report. I would also recommend joining the COPD foundation group… they have a great support group.

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Bill, first, good luck on getting all the upgrades done at your home. I sure hope it takes care of reducing the trips to the ER. Since I rent, so the most I can do is have air purifiers. Second, you mentioned joining the COPD foundation group. Is that the official name of the group or are you referring to this group at Mayo Clinic? If it's different than Mayo Clinic, can you give me the name of the group so I can check it out? I love this group at Mayo Clinic but I wouldn't mind joining another group as well just to give me additional people to chat with. Thanks, Bill, and I pray everything gets easier for you once the upgrades are finished. Be at peace.

Shirley

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@mamawnebel

Bill, first, good luck on getting all the upgrades done at your home. I sure hope it takes care of reducing the trips to the ER. Since I rent, so the most I can do is have air purifiers. Second, you mentioned joining the COPD foundation group. Is that the official name of the group or are you referring to this group at Mayo Clinic? If it's different than Mayo Clinic, can you give me the name of the group so I can check it out? I love this group at Mayo Clinic but I wouldn't mind joining another group as well just to give me additional people to chat with. Thanks, Bill, and I pray everything gets easier for you once the upgrades are finished. Be at peace.

Shirley

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Shirley…. got all the new upgrades in my hivac sys, and added a 7.02 solar array…. my electric bill in 2019 avg $110…. this year $13!!!!

http://www.copdfoundation.org

Bill

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@waterboy

Shirley…. got all the new upgrades in my hivac sys, and added a 7.02 solar array…. my electric bill in 2019 avg $110…. this year $13!!!!

http://www.copdfoundation.org

Bill

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Solar array and installation costs just under $17,000. Got $1500 from Focus on Energy, and this year and next get a $4419 tax credit on fed return. That brings it out of pocket to about $6,619, and the value of the house went up $15K to $20K, and that increase is not in the property tax bill.

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@waterboy

Shirley…. got all the new upgrades in my hivac sys, and added a 7.02 solar array…. my electric bill in 2019 avg $110…. this year $13!!!!

http://www.copdfoundation.org

Bill

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Bill, that is amazing!!!!!! Good for you. Saving money and helping your health. I'm so very happy for you. And thank you so much for the link on the COPD group. I'm going to go on it as soon as I finish up with this message to you. I look forward to following your progress and wish you only the best. You have such a positive attitude and will do whatever it takes to improve your health. God bless you, Bill. You've got what it takes….determination and a positive attitude. I hope you're a man of faith too. Have a wonderful day and be a peace. Thank you for letting me know that all the upgrades are done. I'm so happy for you.

Shirley

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@mamawnebel

Bill, that is amazing!!!!!! Good for you. Saving money and helping your health. I'm so very happy for you. And thank you so much for the link on the COPD group. I'm going to go on it as soon as I finish up with this message to you. I look forward to following your progress and wish you only the best. You have such a positive attitude and will do whatever it takes to improve your health. God bless you, Bill. You've got what it takes….determination and a positive attitude. I hope you're a man of faith too. Have a wonderful day and be a peace. Thank you for letting me know that all the upgrades are done. I'm so happy for you.

Shirley

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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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@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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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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@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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@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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@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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@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.

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