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What is your COPD story? Let's share!
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Debbie
Debbie
Last activity on 01/25/2023 at 12:09 AM
Joined in 2018
@emphman Hi I too would like to be in a discussion of sorts.
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Deborah
cr90931!
cr90931!
Last activity on 06/15/2020 at 7:08 PM
Joined in 2018
13 comments posted | 13 in the COPD Forum
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Hi to the both of you. I have been diagnosed with COPD for going on 6 years. My main treatments have been quitting smoking and changing my lifestyle and diet to eating healthier and doing moderate exercise 4 days, at least a week, going outside and enjoying life - lowering my stress.
I would love to continue this communication.
@emphman and @Debbie when were you diagnosed? How are you doing?
Debbie
Debbie
Last activity on 01/25/2023 at 12:09 AM
Joined in 2018
HI
I was diagnosed in Nov 2017 and was put on oxygen 24/7 at that point. I am doing well no complaints
I take Incruse and Symbicort for my illness.
I also have Sarcoidosis another lung issue that is in remission .
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Deborah
emphman
emphman
Last activity on 07/21/2019 at 4:33 AM
Joined in 2018
15 comments posted | 11 in the COPD Forum
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I have been diagnosed since 2016; I also am on oxygen prn. I also am on Symbicort.
@Debbie How would you say your Sarcoidosis affects your COPD?
lawless
lawless
Last activity on 03/21/2024 at 4:53 PM
Joined in 2018
14 comments posted | 12 in the COPD Forum
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I have been diagnosed for about a year now and have completely changed my diet to include lots of healthy fruits and vegetables (don't have the money to go organic yet) and healthy sources of proteins (fish and chicken) and healthy fats (cashews walnuts omega 3s). I have all buy cut out completely simple and processed carbohydrates. The only thing I am stryggling with still is getting rid of diet soda... I am getting there.
I also have begun to exercise... I try to increase the stairs I walk and the distance I walk weekly or if I can go further than the day prior, I will.
Cherylann
Cherylann
Last activity on 07/11/2020 at 11:58 PM
Joined in 2020
My husband has the server COPD and sleep apnea and has had it for awhile but just permanently got told last year he has it with test and everything, he takes symbicort and Spiriva handihaler and a proair inhaler and at night does the sleep mechine.....
mrmiles
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mrmiles
Last activity on 05/05/2020 at 10:34 PM
Joined in 2018
12 comments posted | 10 in the COPD Forum
2 of their responses were helpful to members
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I was diagnosed about 2 years ago or maybe a bit more. In terms of treatment I'm also on Symbicort, seems to be a popular one among us COPDies! I've also tried to stay active as much as I can but I struggle with breathlessness so I can't do very much. I've been working on switching around my diet to reduce inflammation and it's helped a bit. Hope you all are well!
cr90931!
cr90931!
Last activity on 06/15/2020 at 7:08 PM
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13 comments posted | 13 in the COPD Forum
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@emphman @Debbie @lawless @Cherylann @mrmiles Hi everyone, I haven't been on in a while. How are you all doing? My doctor switched me to Spiriva earlier this year. I haven't been able to be as active with the virus stuff going on so I've started having some more breathing issues. How did you all handle the virus?
MJones99
MJones99
Last activity on 02/09/2022 at 1:15 AM
Joined in 2020
I was diagnosed in 2017 when I was taken from my job in the squad to the hospital spent the night and released next afternoon. I am a smoker and trying to quit. I take trelegy and daliresp have breathing treatments and use proair rescue enhaler and on oxygen at night
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Michelle Jones
NYnNJ1
NYnNJ1
Last activity on 06/18/2020 at 5:31 PM
Joined in 2018
17 comments posted | 13 in the COPD Forum
1 of their responses was helpful to members
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I was diagnosed going on 6 or 7 years now. I've really focused on an anti-inflammatory diet and other natural means (in additions to my meds of course) to help my COPD and it's been going pretty well. I have good days and bad .
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CarolSchmidt
@KathyA, please read what I wrote above on using oxygen. I am so, so, thrilled to have portable oxygen that gave me more of my life back. I was told in 2011 when I lived in San Miguel de Allende at 6,400 ft altitude that I needed to go on oxygen, but all I saw around town was one woman with the heavy metal canisters in a cart behind her, and that looked terrible. I moved back to near sea level and put off needing oxygen all day for another seven years, just a Bipap at night.
Finally I was huffing and having to stop every few feet even near sea level, but I still didn't want to be lugging a heavy canister behind me. I ran into an old friend who was always really active, ballroom dancing, hiking, fly fishing in rivers. And there she was with an Inogen in a backpack, doing everything she'd always done!
She showed me all about hers and the total package with machine, extra 8-hour battery, two battery chargers for house and car, carrying case, and extended warranty, was around $3,300!
Finally I saved enough for it and have loved it every minute since. I started on 2 for almost a year but had to go to 3 for every day. I switch to 4 liters a minute several times a day when I still get winded bad, and have gone up to 5 for stair climbing. I worry that I will need to go higher than 5 eventually, but I hope by then there will be sronger machines developed that go higher, though then the $500 batteries only last a few hours before needing recharging, instead of 6-8.
The portable ones now are breath-operated--you have to be breathing into the nose cannula for them to work. And my BiPap at night requires continuous flow, which the big oxygen machine Medicare covers provides, so I need both machines. Some day they may all be continuous flow and still portable.
There are cheaper, refurbished units available from the Inogen factory, too. After 1 1/2 years mine started sending strange messages and I called the factory and they sent a new one out the next day! I sent them the old one back no charge. So I am pleased with service, too.
Hope this helps you accept your machine. I am so, so happy I got mine and wish Medicare paid for everyone who needed one.(I understand in a few cases they will pay for one now, but not my particular Cigna Medicare Advantage plan.)
I bet when you go to your reunion you won't be the only one on oxygen! And everyone will be so old! The ones who are already dead and not there are the ones to think about--how many of them had COPD? Fourth leading cause of death in the US before Covid, so now we're fifth. Be glad for all the help you can get! I hope you have a wonderful reunion!
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cbholder3
@Thakera Yes, even on Medicare it was $400+ a month. My Pulmonologist arranged for me to get it with no copay from GSK, GlaxoSmithKline, you can look up their assistance program at https://www.gskforyou.com/ Hope it goes okay for you, I am just in the process fo renewing mine for next year.
GSKForYou | GSK Patient Assistance Program
Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.
See the best comment
CarolSchmidt
@KathyA, please read what I wrote above on using oxygen. I am so, so, thrilled to have portable oxygen that gave me more of my life back. I was told in 2011 when I lived in San Miguel de Allende at 6,400 ft altitude that I needed to go on oxygen, but all I saw around town was one woman with the heavy metal canisters in a cart behind her, and that looked terrible. I moved back to near sea level and put off needing oxygen all day for another seven years, just a Bipap at night.
Finally I was huffing and having to stop every few feet even near sea level, but I still didn't want to be lugging a heavy canister behind me. I ran into an old friend who was always really active, ballroom dancing, hiking, fly fishing in rivers. And there she was with an Inogen in a backpack, doing everything she'd always done!
She showed me all about hers and the total package with machine, extra 8-hour battery, two battery chargers for house and car, carrying case, and extended warranty, was around $3,300!
Finally I saved enough for it and have loved it every minute since. I started on 2 for almost a year but had to go to 3 for every day. I switch to 4 liters a minute several times a day when I still get winded bad, and have gone up to 5 for stair climbing. I worry that I will need to go higher than 5 eventually, but I hope by then there will be sronger machines developed that go higher, though then the $500 batteries only last a few hours before needing recharging, instead of 6-8.
The portable ones now are breath-operated--you have to be breathing into the nose cannula for them to work. And my BiPap at night requires continuous flow, which the big oxygen machine Medicare covers provides, so I need both machines. Some day they may all be continuous flow and still portable.
There are cheaper, refurbished units available from the Inogen factory, too. After 1 1/2 years mine started sending strange messages and I called the factory and they sent a new one out the next day! I sent them the old one back no charge. So I am pleased with service, too.
Hope this helps you accept your machine. I am so, so happy I got mine and wish Medicare paid for everyone who needed one.(I understand in a few cases they will pay for one now, but not my particular Cigna Medicare Advantage plan.)
I bet when you go to your reunion you won't be the only one on oxygen! And everyone will be so old! The ones who are already dead and not there are the ones to think about--how many of them had COPD? Fourth leading cause of death in the US before Covid, so now we're fifth. Be glad for all the help you can get! I hope you have a wonderful reunion!
See the best comment
cbholder3
@Thakera Yes, even on Medicare it was $400+ a month. My Pulmonologist arranged for me to get it with no copay from GSK, GlaxoSmithKline, you can look up their assistance program at https://www.gskforyou.com/ Hope it goes okay for you, I am just in the process fo renewing mine for next year.
GSKForYou | GSK Patient Assistance Program
Learn how our program can assist you if you need help paying for your GlaxoSmithKline prescription medicines and vaccines, whether you have coverage or not.
See the best comment
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emphman
emphman
Last activity on 07/21/2019 at 4:33 AM
Joined in 2018
15 comments posted | 11 in the COPD Forum
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Hi guys and gals... looking to create a discussion with some of you to better understand us and our conditions.
When were you diagnosed with COPD and how long have you had it for? What types of treatments or things have you done to improve you "life" and "function" since the diagnosis?