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skhill
Member

USA
220 Posts

Posted - Jun 06 2019 :  10:17:33 PM  Show Profile  Reply with Quote
My Pulmo has ordered for me to use the Trilogy. It is in the process of being approved or denied by my insurance. Anyone else have any experience with this machine? I always think of a ventilator as being used when one cannot breathe on their own. That is not me. I can breathe on my own and I do not have sleep apnea either. When I was hospitalized this past February I was ordered from doctor at the hospital to have 02 at home now. The same day I was release Apria came out and brought me my 02 unit. That same lady I talked to from Apria read off that I had too much carbon dioxide in my blood. I only had blood taken from my veins not from an artery to get an actual blood gas test done. They hurt I remember that from a long time ago. Any way I am not sure why my doctor thinks I need this machine when I breathe on my own. I am a shallow breather I have been told. From what I have read on the internet I am really confused. Makes me feel like he thinks I am worse than I am or maybe I don't realize how bad I am. When I call to speak to my doctor I get his nurse or the RT not him. I am going to call him again tomorrow to get more info on this machine. I would like to know if I will become dependent on this machine which I don't want to be.

jmrommes
Contributing Member

1991 Posts

Posted - Jun 07 2019 :  07:08:51 AM  Show Profile  Reply with Quote
Your doc has done you a favor. You're a shallow breather and you use O2 at night. The Trilogy, which is the most sophisticated machine of its kind and can be calibrated to your specific needs closer than any other, with help you breathe deeper and be able to get that O2 well into your lungs. You're lucky he even knows about the machine; many don't and patients don't get the benefit. You're not going to become dependent on the machine, but it will help you breathe and probably sleep much better at night.

Exercise not only lets me live, it enables me to have a life.
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skhill
Member

USA
220 Posts

Posted - Jun 07 2019 :  10:12:27 AM  Show Profile  Reply with Quote
Thanks Jean you have helped put my mind at ease. It was actually a person from Apria that said I needed one and called my doctors office to ask for a script for it. My questions are how do they know I am a shallow breather? there was no test done to determine as far as I know. My last PFT was done over a year ago and FEV was 39. He has ordered another one for this year. Waiting to get it scheduled. I guess I am curious as to how the lady from Apria knows and how do they know what settings to put it on?
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Jocopd
Member

USA
184 Posts

Posted - Jun 07 2019 :  2:21:46 PM  Show Profile  Reply with Quote
Apria knows cause the doctors put it in the prescription.

You cannot get oxygen without the doctor telling the supplier what % to set things at.

Like a normal script for pills would be 1 a day take with food. Well your oxygen script says 2% at night while sleeping.

I had a run around last year when the doctor's office left off the liter % on mine (they kept thinking we were talking about my test % lol) and the medical supply company would not supply my equipment until they had that %. It did not matter that I had been on 2% for years - it needed to be stated in the script.

Edited by - Jocopd on Jun 07 2019 2:22:38 PM
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skhill
Member

USA
220 Posts

Posted - Jun 07 2019 :  10:29:22 PM  Show Profile  Reply with Quote
Jocopd yes I understand the script part on the 02 but how do they know about me being a shallow breather. How do they know I don't take deep enough breaths? I can see if there had been a sleep apnea test done but nothing like that not recently anyway. Just not sure how they know I need this machine without any testing done. I am still going to ask some more questions might be mute anyway if my insurance doesn't approve it. Medicaid already wants to take away my Inogen One because last week my 02 level only went to 90 after 3 minutes of walking around the doctors office and it needed to drop to 87. I wanted to walk some more but didn't say anything I wish now I had. If I lose my Inogen One then I will have nothing with me when I leave the house. I don't need my 02 24/7 but I would like to have it if I need it. I don't want to feel like a prisoner in home where I cant go anywhere in fear of needing 02. Cant afford to buy the machine.
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sslei
Member

154 Posts

Posted - Jun 08 2019 :  1:29:16 PM  Show Profile  Reply with Quote
I did not buy the machine , the doctor ordered and they brought it to me medicare and my medigap insurance pays for it.
Sandy L.
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sslei
Member

154 Posts

Posted - Jun 08 2019 :  1:32:01 PM  Show Profile  Reply with Quote
Maybe you were talking about your Inogen One if so that should have nothing to do with the trilogy.
Sandy L
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skhill
Member

USA
220 Posts

Posted - Jun 09 2019 :  10:23:41 AM  Show Profile  Reply with Quote
Yes Sandy I am referring to the Inogen One. Medicaid said they weren't going to keep paying for it since my 02 level was at 90 at the doctors office last week but they will still help pay for my unit at home. I don't understand that. If I qualify for one then why not the other? I like having an 02 unit with me when I leave the house.
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sslei
Member

154 Posts

Posted - Jun 09 2019 :  11:45:10 AM  Show Profile  Reply with Quote
I know nothing about Medicaid- mine is Medicare,I have the home system and then 2 tanks that I use to go to the doctor,My husband helps me otherwise I would be up a creek. I could pay to have the Inogen one or something like it. but medicare will not pay both , The reason I like the tanks (would prefer lighter) is if electric goes off.
Saving up for an Inogen or something.

If you can find someone to ask?
just what are you supposed to do when you go to a doctor you cannot take your home system and get an answer from someone, since doctor said you needed it at home.

Sandy L
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Jocopd
Member

USA
184 Posts

Posted - Jun 09 2019 :  5:06:23 PM  Show Profile  Reply with Quote
Medicare and medicaid are very stubborn with the Inogens, part of it is the cost and part of it is the maintenance. After all they are limited on what they can charge your medicaid or other insurance for that rental so they cheaper product the better for them. And once again it boils down to your test results. They way my DME provider explained it is you have certain oxygen levels which dictate what units you are eligible to get. I think they are saying you will not qualify for the Inogen but you might for the little tanks. But then again 90 is pretty darn good.

But for years DME providers have given COPD patients and others the tanks on pull-alongs so people can be mobile. Inogen is just a Cadillac version of the tanks. After all people have been out and about with COPD for a long time now without Inogen.


The other home units they give us are super easy to do maintenance on for a couple of dollars and can last forever. It takes about $900 to repair an Inogen.

I bought an Inogen when my DME provider would only give me the home concentrator cause my tests were not low enough. Plus I did not need oxygen to go outside of my house but it was a comfort to have the Inogen "just in case". I came to hate my Inogen.

Well now my breathing has gotten worse and I am now getting little E tanks from my DME supplier since I need them to go on errands, shopping whatever. They fit in a shoulder harness over my shoulder and they only weigh 3 pounds. They did not offer an Inogen and I did not ask for one.



Inogens are not really that much better. With my little tanks I can go "constant flow" if I need to - which Inogen does not provide - or just keep it at level 2 pulse. But what I really like on the tanks is if I am set at level 2 and take off the nose piece to do something I don't get an alarm like Inogen does. I even turned off the alarm but Inogen will stop producing oxygen when it does not have the inhale happening. Also where I live it gets to over 110 in the summer and the Inogens don't last many years in that kind of heat while in the car.

I am surprised you doctors office did not "help" you with the tests to get a "better" reading. My doctor has a stair step stool type thing in his office that is handy if you know what I mean.

Don't despair there are many second hand medical suppliers who can get you an Inogen much cheaper than new - and I am sure your doctor will write the script necessary to buy it from them.

Edited by - Jocopd on Jun 09 2019 5:15:00 PM
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Dave-OH
Administrator

USA
4237 Posts

Posted - Jun 09 2019 :  5:21:16 PM  Show Profile  Reply with Quote
I have this unit. It does pulse and continuous to 2 liters. Battery, car charger, home power, car and carrying case are included. I have 2 batteries.

https://www.usa.philips.com/healthcare/product/HC1068987/simplygo-portable-oxygen-concentrator

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info


My Site: http://lungresources.com
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sslei
Member

154 Posts

Posted - Jun 10 2019 :  11:31:50 AM  Show Profile  Reply with Quote
The one Dave talks about is the one I have thought about when I decide to get one. (not the mini Simply Go)
Sandy L.
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Dave-OH
Administrator

USA
4237 Posts

Posted - Jun 10 2019 :  9:53:19 PM  Show Profile  Reply with Quote
I love it when I need it - right now when we fly and at higher altitudes. When I got it, 24 X 7, although I also had a home unit.

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info


My Site: http://lungresources.com
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Jan-KS
Member

USA
105 Posts

Posted - Jun 11 2019 :  06:31:25 AM  Show Profile  Reply with Quote
You know I keep looking at all the portable oxygen concentrators and for the life of me, I cannot see any benefit. I have all the little bottles to go out with. I usually take one but keep an extra in the car (like an idiot I ran out of O2 today at the grocery store and barely made it to the car) but the portable concentrators have a battery that must be switched out or recharged. The portables weigh at least 3-5lbs - the batteries add a couple more pounds. My biggest complaint with my bottles is that they are way to heavy for me to carry somedays - and they only weigh 3lbs. I couldn't possibly carry the portable concentrator. I can re-charge my bottles at home (I have 6 that are always charged as well as a huge one that lasts about 24 hours that I can't even move (so I'll be breathing in the closet with an extended power outage LOL). Most bottles last 3 1/2 to 4 hours (I'm on level 3 and sometimes 4 if I'm doing something really exhausting like raking leaves. 3-4 hours is how long the portables last (some of the bigger heavier ones last longer). So is their some magical way to make them last 8 hours and just levitate next to you so you don't have to carry it? Oh - one benefit - I would be able to charge the battery or breathe while on battery anywhere that has an electrical outlet. My husband used to be hospitalized frequently and the hospital would never let me use their oxygen - so I'd have to load the tanks in a little cart and push them all over the place) I think they'd let me use their electrical outlet since they let everybody charge their cell phones. Does the battery run out sooner if you are on continuous? One of my complaints about the tanks is that if you put them on 2 L continuous it's not enough O2 for me and the tank runs out of air after 30 minutes.

Jan C
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Dave-OH
Administrator

USA
4237 Posts

Posted - Jun 11 2019 :  12:04:50 PM  Show Profile  Reply with Quote
Each battery would not give you much longer at 2 liters, but they have a cart, car and home charger and you can get extra batteries. Look at page 7

https://philipsproductcontent.blob.core.windows.net/assets/20170523/8d155caa58f849409df0a77c0166c013.pdf

Dave, Forum Administrator
COPD Support, Inc. http://www.copd-support.com/
Your source for peer support and COPD Info


My Site: http://lungresources.com
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skhill
Member

USA
220 Posts

Posted - Jun 12 2019 :  12:04:48 PM  Show Profile  Reply with Quote
I talked to the accounts manager at Apria and she said to go to the pulmo rehab to get evaluated or to take the walk test but my doctors office said no because he wants me to have another PFT that includes the walk test. I just had the PFT Feb 2018. Just a little over a year ago. It is not so much I want the Inogen One but I do want something to take with me when I leave the house. I don't need my 02 all the time but I do need it at times. I don't ever want to feel like I did when my 02 was down in the low 70's that was a little scary and to think that could happen and me not have any 02 with me. Yes I have good days where my 02 can be 93 but not all the time and depends on what I am doing. Sometimes I can be really SOB but the 02 level still be in the low 90's. That is confusing to me. Thanks everyone for all your suggestions. The Therapist at my doctors office says it is a good thing if I don't need 02 to take with me. I told her I understood what she means by that but if she ever could not breathe and then was put on 02 and could she would understand my feelings better. I found out it is costing Medicaid $7.43 each month for my Inogen One. I think I would rather want a different travel 02 unit that I can get more than 2 or 2.5 hours out of but still be light weight.
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