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Has anyone been to the Lung Institute?
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byumimi
byumimi
Last activity on 01/30/2021 at 9:01 PM
Joined in 2018
I only know of anecdotal treatments....friend of a friend of a friend, but they swear by it. Haven't been able to connect with said friend. Pulmonologist says no, no, no. Cell therapy can't help this. Costly treatment, but still waiting to hear/see more.
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byumimi
cr90931!
cr90931!
Last activity on 06/15/2020 at 7:08 PM
Joined in 2018
13 comments posted | 13 in the COPD Forum
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I live here in Tampa, FL and it seems we have one here, yet I have never heard about it. I just googled it and briefly read up on the website.
@Mallia50 have you heard great things about this place? Care to share what you have heard... I am interested in learning more.
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mrmiles
Last activity on 05/05/2020 at 10:34 PM
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12 comments posted | 10 in the COPD Forum
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@Mallia50 did you ever make an appointment there? How did it go? Were you satisfied?
Mallia50
Mallia50
Last activity on 08/12/2023 at 9:11 PM
Joined in 2018
I did have an appointment there about 4 or so years ago. I did not have treatment. They were very nice but I never saw a doctor, just a nurse. That bothered me a little bit. On there web site they have lots of testimonials. I do feel that someday they will treat lung disease with stem cells but they are not there yet. Hopefully we will live long enough to see it. LOL
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Michael
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Lee__R
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Last activity on 04/03/2020 at 5:04 PM
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1,338 comments posted | 35 in the COPD Forum
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@Mallia50 thank you for your input.
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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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Mallia50
Mallia50
Last activity on 08/12/2023 at 9:11 PM
Joined in 2018
2 comments posted | 2 in the COPD Forum
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Has anyone been there for cell treatment??