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If you could get rid of one of your COPD symptoms, which one would it be and why?
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copd_healing
Good advisor
@Courtney_J I think right now for me it would have to be the disturbed sleep. I'm always waking up in the middle of the night coughing or having a hard time breathing or needing to use the bathroom. I'm always exhausted because of it. It's really rough now because I'm still working from home so i don't have the pressure of a morning commute so I should be able to sleep better, right? Nope! Thanks, COPD!
brthfree
Good advisor
@Courtney_J The breathlessness! It's so bad for me these days. Sometimes I'm even out of breath when I'm just sitting down doing nothing! It keeps me from doing a lot of things.
lightening1952
For me it's the constant coughing and getting the phlegm to come up. There is a horn like thing I received in the hospital one time that vibrates in the deep part of your chest that helps the mucus to loosen up and enables you to spit it out. But I cannot for the life of me remember what it is called. I would like to find another one to purchase if anyone can tell me the name of it. Thanks for any help you can give.
byumimi
I don't have a cough, ever. My biggest gripe is the breathlessness. Have trouble walking up the hallway at home. Split level home requires climbing steps to get to kitchen. Can sometimes be a killer. Use oxygen concentrators (portable & a home unit) when needed. Keep track of my oxygen saturation making sure I stay above 90%. When gyms closed down, I was able to function without even the portable unit & pulse ox readings were in 95% range. Having not attended gym in 5 months or so I am having difficulties again! Obtained stationary bike--hoping that will allow me to regain progress.
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byumimi
byumimi
@lightening1952 I believe what you used is referred to as an ''a capella''. I have seen these available on Amazon.
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byumimi
lightening1952
@byumimi thank you for the information
Nancy2020
Good advisor
The breathlessness because I get so scared when I can’t breath which then makes my breathing worse
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Nancy2020
Gpacs3
The shortness of breath with any kind of exertion. .
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Dmv
sandra1999
@Courtney_J @Courtney_J being able to breath better and have engery
sandra1999
@Courtney_J @Courtney_J being able to breath better and have engery
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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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Courtney_J
Community managerGood advisor
Hello everyone,
How are you today?
With chronic illness often comes many symptoms that can make daily life difficult. I thought it might be interesting for us to talk about COPD symptoms.
If you could get ride of one of your COPD symptoms, which one would it be and why? How would your life change if it were gone? Feel free to share here, you may find that you have some common opinions with others!
@Nathan @Gringa @lss4747 @Valharley @PamelaSue @mikesantiago @meme0923 @pricedavid @Debbesters @candie1961 @Dana499 @alilib2000 @Idon,tknow @ocalagrandma @kdncrafts3250 @Scared @DesertDog @gary.harper61 @Speagle
Take care,
Courtney