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COPD and Social Life: Discuss how COPD affects it
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NYnNJ1
NYnNJ1
Last activity on 06/18/2020 at 5:31 PM
Joined in 2018
17 comments posted | 13 in the COPD Forum
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COPD used to have a large affect on my social life, but I have thankfully gotten things under better control by changing my lifestyle over the past few years. In the beggining it affected my social life because I was constantly out of breath, fatigued, and coughing or feeling like coughing constantly.
However, now I am able to attend more social events than the years prior and feel less faitgued, so I can actually enjoy myself. I still can't over do anything, but I am much more mobile and energized.
I try to exercise everyday... yes 7 days a week. My exercise is light to moderate, but every bit helps. It helps me feel less fatigued and helps me gain back the strength in my lungs. I continue to do pulmonary exercises I learned from PT also.
LizziB
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LizziB
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Last activity on 04/21/2024 at 8:17 PM
Joined in 2022
603 comments posted | 10 in the COPD Forum
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Hi everyone,
I know this is an older discussion question, but I think it deserves a few more responses! I will tag a few members who might be able to share a story with us.
@Lacyann @Jabramo @Ydavy41 @bbyrd81451 @Jackiewoodstock @Dlancrn @Houghemani @CatK2021 @leaftheif2000 @Vergeson_84 @Fionad69 @TuffyOneKenobi @chrissymka @Ma3casto @anablus81 @TARA MOM @Lorifitts @srrmaui @RobinCartner @AnnieZak114$ @nailila @Tmanpro @MarcieAng @Rheuno @Suemsandiego @kellyannbartlett @LJNMSW
Has COPD affected your social life? Was there an activity you had to drop out of because of your illness? Do you opt out of certain outings because you know it will be difficult for you to manage? Do your friends not invite you to do certain things because they know you will not be able to do it?
Share your experiences!
Take care,
Lizzi
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LizziB
copding
copding
Last activity on 03/21/2024 at 4:31 PM
Joined in 2024
Don't know yet. just got diagnosed and most of my friends have no clue. I figure there will be problems if anyone smokes but then I'll just go back inside or have a difficult converstaion about it. In the end if they really care they won't do it around me
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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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Lee__R
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Lee__R
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Last activity on 04/03/2020 at 5:04 PM
Joined in 2018
1,338 comments posted | 35 in the COPD Forum
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Hello,
Does COPD affect your social life? How so? How do you manage it?
I look forward to your testimony and discussion.