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What is your COPD story? Let's share!

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What is your COPD story? Let's share!

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emphman

03/08/2019 at 4:01 AM

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?

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Courtney_J

Community manager

07/01/2020 at 6:29 PM

Good advisor

Hello everyone,

How are you doing? Have you seen this discussion?

What is your COPD story? How were you diagnosed? How are you doing now? What medications or treatments have you tried? Feel free to introduce yourself and share your story, your advice or your support here!
@Dakotamoonstar22‍ @GidgetB‍ @Keally‍ @Kwarpenburg‍ @Shanaynay‍ @afalco46‍ @mfcmom‍ @PinkCarnation24‍ @roconnor0768‍ @Hera0301‍ @Kelley2020‍ @RobinRenee‍ @Sodbuster‍ @PatriciaSantiago‍ @Mommastruggling‍

Take care,
Courtney

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Courtney_J, Community Manager, Carenity US

What is your COPD story? Let's share! https://www.carenity.us/forum/copd/living-with-copd/how-long-have-you-been-diagnosed-with-copd-wha-821 2020-07-01 18:29:05

copd_healing

07/03/2020 at 4:28 PM

Good advisor

@Courtney_J Ah I'm surprised I haven't commented on this yet! I've had COPD for several years now and I feel like I've got a pretty good control over it for the most part. I still struggle at night. Hope everyone's doing ok!

What is your COPD story? Let's share! https://www.carenity.us/forum/copd/living-with-copd/how-long-have-you-been-diagnosed-with-copd-wha-821 2020-07-03 16:28:33

brthfree

07/10/2020 at 6:15 PM

Good advisor

@MJones99 I'm a former smoker and I know how hard it is. I switched to vaping a while ago and now I can't seem to drop that habit.

Anyway, I've had COPD for a while now, because of my many years of smoking. I really struggle with breathlessness and sometimes a cough even though I'm on advair.

What is your COPD story? Let's share! https://www.carenity.us/forum/copd/living-with-copd/how-long-have-you-been-diagnosed-with-copd-wha-821 2020-07-10 18:15:33

Anna2352

03/05/2024 at 3:33 AM

Will I am a recovering alcoholic of 40 years and I guess I was diagnosed with COPD at least 20 years ago I,I quit smoking about 15 years ago and about 16years ago had a collapsed rt lung and had an MRI and I had quite a few large bullae on both lungs but a large one on my rt lung rupture and caused lung to collapse so I had surgery and then 10 years ago I was admitted for 3 weeks for asperation and after 2 week in hospital my rt lung collapse again and dr glued it to my ribs and I didn't catch covid had 7 boosters but caught ka virus about 2 months ago and still dealing with the effects of that also on home oxygen and depressed as my brother passed in November from COPD plus I have high BP on a fluid pill and chronic pain in my feet and I have high anxiety and cognitive issues and eye problems and I pray 🙏 and try to feel grateful but lately I just want to give up as I am tired of the struggle and no fun,but reaching out for support and prayers, thanks for reading this

What is your COPD story? Let's share! https://www.carenity.us/forum/copd/living-with-copd/how-long-have-you-been-diagnosed-with-copd-wha-821 2024-03-05 03:33:41

Breathmaster

04/09/2024 at 2:14 AM

I still remember struggling for days and weeks before getting assistance. Breathing was from breath to breath only because I just couldn’t go longer. My parents took me to the hospital cause I was struggling so hard but I was getting blue. I was tired, very very tired. So at 10 months old I stopped. The doctors brought my body back but I was not thought to live very long. So that was the beginning of my life of always struggling but sucking it up because that was what was beaten in to me. My story goes on and I, my condition, is a unique one so I’ve been told. I will share more in time. But that was the beginning. Oh I get so bad so often but I always survive because my mind is strong.

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Mark S

What is your COPD story? Let's share! https://www.carenity.us/forum/copd/living-with-copd/how-long-have-you-been-diagnosed-with-copd-wha-821 2024-04-09 02:14:31

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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

See the best comment

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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