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How do you handle shortness of breath (dyspnea)?
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CarolSchmidt
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CarolSchmidt
Last activity on 09/25/2021 at 7:19 PM
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@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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Courtney_J
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Courtney_J
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@Pelletierc123 Hello Pelletierc123, thank you for opening this discussion. I'm sorry you're still having after effects from bronchitis! Let me tag some other members who can maybe share their experience and how they handle dyspnea.
Hello everyone, how are you today? Do you ever experience dyspnea (labored breathing or shortness of breath) with your COPD? How do you cope with it? Has it ever been persistent after a bout of illness like in @Pelletierc123's case?
@PattiSample @CarolSchmidt @Shadygrl @Laurabrandt @Dalelee @Dazzle64 @mystic @Tiraehuy @glenm77 @jeankos59 @renee21760 @krclark3 @Bp1961 @Anglkiss @lylealan @dadof3 @Bdl0715 @Mako9152 @Slrdmr1
Feel free to share any experiences or advice with us here!
Take care,
Courtney
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Courtney_J, Community Manager, Carenity US
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gommer1
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gommer1
Last activity on 11/10/2024 at 9:04 PM
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@Courtney_J I have a rescue inhaler but shortness of breath is a part of life with COPD I expect to one day need oxygen
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CarolSchmidt
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CarolSchmidt
Last activity on 09/25/2021 at 7:19 PM
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COPD's main symptom is shortness of breath, IMO. When it is worse, I rest for a minute, If it continues, I kick my inogen setting up to 4 liters from my usual 3, and if that doesn't work I take two puffs of Albuterol rescue inhaler. So far, this works. Never had to be hospitalized yet for a severe episode. I'm in stage 3.
Akfreebird
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Akfreebird
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I find just taking the time to just sit and focus on your breathing without distraction helps calm the urgency to breath. Breath deeply through your nose and with pursed lips breathe out as much bad air as possible to expel the bad juju left that can build up in your lungs. Doing this a couple times a day or more helps. Dont turn up your oxygen level, I only do this if I'm physically engaging in activities like vacuuming or just walking around for long periods of time. I am in stage 4. Been on oxygen for 6years. Diagnosed by a doctor in 2006, belive I have had it since 2002. Just got bad enough to go to the hospital were they keep me up to a week. Good luck, just remember to Breathe!
CarolSchmidt
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CarolSchmidt
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@Laurabrandt how long did it take you to get to stage 4 from 3 and from first diagnosis? I was diagnosed with COPD in Mexico in 2011 and put on Symbicort and told to move down closer to sea level, which I did. First pulmonologist in Phoenix said I had restrictive breathing disorder and took me off of Symbicort, but onto a Bipap. He retired, next lung doctor says level 3 COPD, oxygen 24/7, trelegy, albuterol. That was a year ago. I’m 78, overweight, with a heart condition. Comments? I would really like input. I know everyone is different. I am inspired that you seem to be doing so well so long at stage 4.
Pelletierc123
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I was in stage 3 for 10 years and had a bad exacerbation and then I became stage 4, I am also having first time with bronchitis and it has been 5 weeks and it affected my breathing so bad just sitting I want to keep yawning been on 2 full rounds of prednisone and now on 3rd and doesn’t to be working I guess we all have different problems but it is so good to talk to people who understand
Pelletierc123
Pelletierc123
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How many weeks does a copd bronchitis flare up last
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@Pelletierc123 That's how I feel. Nice to talk to people who understand. I was on a couple of rounds of prednisone and still couldn't breathe and they did a breath test and found out I was Stage 4. Inhalers didn't seem to work any more so now I am on 24/7 oxygen and fighting tears half the time. It has only been about 10 days with this oxygen. I have a class reunion next summer that I was so excited about it and now I don't know if I even want to go with an awful breathing machine at my side.
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gommer1
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gommer1
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go to your class reunion needing oxygen is nothing to be ashamed I am sure they will understand get out enjoy life as much as you can dont be a recluse
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wymzark
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Last activity on 08/13/2021 at 2:18 PM
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After blowing into a desktop PFT rig in 2004 the nurse told me I have the lungs of a 140 year old. Xmas day 2018 was my first full blown respiritory failure with intubation and a 3 day ICU stay. Don't remember what happened but am told it was awful having me carted off in an ambulance. My bad SOB episodes now are so severe I lose control of bodily functions. I call them PDBL (pee down both leg) events and the only way I can recover is to totally relax and focus on the exhale. Hoping to have endobronchial valve treatment soon and get a little more time before I stroke out from no O to the brain.
CarolSchmidt
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CarolSchmidt
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Laughing to keep from crying. @wymzark, I'm on water pills for related heart problems and I spend $45 a month on 24/7 incontinence products and still pee down both my legs sometimes. I sit on the toilet and breathe slowly and deeply to relax. I don't leave the house for the four hours or so of the worst after taking the Lasix in the morning. I was able to get an Imogen portable concentrator form y waking hours (regular oxygen at night attached to my BiPap) and I started on 2 liters but quickly went up to 3 for every day. When I am having breathing trouble I put it up to 4 and a few times a month even 5, if I have to climb stairs or walk more than 100 feet. Are you on oxygen at home? How awful that you had to be intubated. And now you can't count on there being a hospital bed and a ventilator when you need it because Covid patients are overflowing our medical system with the worst yet to come. I surely hope you can get an endobronchial valve treatment soon that will help a whole lot.
CarolSchmidt
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CarolSchmidt
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@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.
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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
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Pelletierc123
Pelletierc123
Last activity on 12/15/2024 at 8:56 PM
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I had my first bout of bronchitis and I have had it for 4 weeks took two rounds of prednisone and antibiotic cough gone but not the dypsnea so frustrating