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What is it really like to live with COPD?

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Lee__R

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01/16/2018 at 4:00 AM

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Lee__R

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Last activity on 04/03/2020 at 5:04 PM

Joined in 2018

1,337 comments posted | 35 in the COPD Forum

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Hi Carenity Members,

I am hoping that the community here at Carenity with COPD will use this forum to post what life is really like when living it with COPD.

Please post your story about living with COPD.

Include information that you feel would be important for a newly diagnosed person, family member, or caregiver to know.

The goal is that this discussion turns into a useful part of the forum where new users, current users, family members, and caregivers could come for helpful information regarding what life is like for those living with COPD.

Through a community we are stronger.

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cr90931!

06/12/2018 at 7:57 AM

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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I would love to hear people's lives and experience with COPD. I was diagnosed many years ago. I believe it is attributed to my smoking habits in my younger days and being around those smoking as well sure did not help. I also attribute it to where I lived - LA - with al the pollution.

Anyways, I am doing much better now than 5 years ago. I have really focused on getting right with my health and diet. Baking Soda I also believe has done wonders for me in easing my difficulties breathing.

What is it really like to live with COPD? https://www.carenity.us/forum/copd/living-with-copd/what-is-it-really-like-to-live-with-copd-11 2018-06-12 07:57:03

kasloan55

06/12/2018 at 10:54 AM

kasloan55

Last activity on 03/19/2021 at 5:34 PM

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2 comments posted | 2 in the COPD Forum

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Baking soda? Please explain i will try anything. Thank you.

What is it really like to live with COPD? https://www.carenity.us/forum/copd/living-with-copd/what-is-it-really-like-to-live-with-copd-11 2018-06-12 10:54:14

kasloan55

06/12/2018 at 10:55 AM

kasloan55

Last activity on 03/19/2021 at 5:34 PM

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2 comments posted | 2 in the COPD Forum

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Has anyone had experience with herbal cure from west africa? Dr. Successful?

What is it really like to live with COPD? https://www.carenity.us/forum/copd/living-with-copd/what-is-it-really-like-to-live-with-copd-11 2018-06-12 10:55:35

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CarolSchmidt

12/21/2020 at 10:35 PM

@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

12/02/2022 at 3:21 PM

@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.

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CarolSchmidt

12/21/2020 at 10:35 PM

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cbholder3

12/02/2022 at 3:21 PM

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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