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They put their grubby hands on my Machine!!!
#1
Gross 
They put their grubby hands on my Machine!!!
So... Had my 30-90 day compliance appointment.

i knew when they said to bring the machine.... it wasn't going to go well.

The nerve of the Sleep specialist...  To tell me NOT to adjust my machine due to other health issues, that it could be dangerous.  I interjected, that if I did not receive what I 'needed' that could be dangerous!  Never mind you, I did not adjust auto pap to have a large gap in cm... only 9-12.  

And wouldn't you know, that after 44 days of data... He was able to see, that my true pressure should be at 10. (average).  Admittedly, he agreed that the Titration Study is only a 'snapshot' and time is limited in order to get a proper pressure.  Originally my prescription was set to 8... 

I explained to him that I felt like I was suffocating 3 days in and I changed the pressure for comfort.  He was P*ssed and glad to have the numbers in his face at the same time.  THE PROOF is in the pudding!!   Lolabove

He had an assistant come to retrieve my machine to set the new pressure... I said "I can do it"... He said, "I know you can, but in the future, call me".
She came in to take the machine and I growled... "I don't want you to touch it!!" LOL!!!   

*** I haven't had the chance to look yet, to make sure they didn't add a pin... but, I don't think they did... as the report showed I have been compliant, if a pin has been added, I will tell them to shove it!  I have become very protective over the machine and my sleep health (Thanks to you all!).

Hope this helps someone else know what to expect... (maybe, depending on the specialist..)
DreamBreather  Coffee
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#2
RE: They put their grubby hands on my Machine!!!
As a Canadian I find this DME system you have in the US very strange. It almost seems like having sleep apnea in the US is like committing a crime where you get a suspended sentence with regular parole appointments to ensure you are being a "good girl".
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#3
RE: They put their grubby hands on my Machine!!!
Dreambreather,

I'm not sure where you live, but I use Patient Aids in Lexington off of Man O War. They have been good to me. They don't care what I do so long as I'm using the machine and my numbers look good. I went in the other day to give them information from my machine and asked if I could buy some filters. They gave me half a dozen and told me to have a good weekend. Also, my machine was new open box, it didn't come with a travel case. Patient Aids gave me a new one. No charge.
Jesse


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#4
RE: They put their grubby hands on my Machine!!!
My DME has never touched my machine, nor seen it since the day I got it. The only time I hear from them is every quarter when I get an email from them saying it is time for replacement parts, do you need anything? If so, let us know what you need and we will send them to you. My sleep do (ENT) sees my SH reports every time I go in. All is good. I did find out that they are also a competitive-bid Medicare provider so when I change to that near the end of the year, I can keep them. 

Now, my wife's DME is another story. She has many calls in to their respiratory therapists and her "sleep coach" and no one will respond. They called her once every couple of weeks until she made their first two compliance periods (30 and 90 days). She is having issues with her machine shutting off during the night (not the cats as the switch has a cover which has to be moved to turn it on or off. IIRC she has a Dreamstation and it won't read in SH. Also has a modem and every time we made a change, they would change it right back. Remove the modem and get a phone call within ours as to why it isn't working. I haven't had a chance to go digging into her system to see what is really going on.

Homer
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#5
RE: They put their grubby hands on my Machine!!!
My DME experience is a lot like Homer's. I interacted with the DME within 2 weeks of getting the new ASV, stating ignorantly that my run and user hours didn't match, where I concluded they gave me a used machine. FWIW it was the cool down function upon waking that skewed the hours. The RT stated something was broke on the ASV, and they swapped it for another new, uh verified new by Dave at zero run hours.

All 3 amigos, Doc, DME, Insurance are aware Dave changes his settings if needed, and they do not, so thank you for not messing it up.

OK, they only communicate with me from the automated supply system they have in place. Apria by name.

Coffee
Dave

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#6
RE: They put their grubby hands on my Machine!!!
Mine is Symbius and they just spun their respiratory side off under a new name. For the life of me can't remember who it is, but they are still good.

By wife is with Timbro and while their folks are knowledgeable, their customer service is almost non-existant. Like I said, they don't like to return calls.
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#7
RE: They put their grubby hands on my Machine!!!
(05-04-2018, 10:53 AM)Ron AKA Wrote: As a Canadian I find this DME system you have in the US very strange. It almost seems like having sleep apnea in the US is like committing a crime where you get a suspended sentence with regular parole appointments to ensure you are being a "good girl".

Yes, Ron that's what it feels like... However, the DME is cool... It was the DR that threw the fit.  (Go figure)..
DreamBreather  Coffee
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#8
RE: They put their grubby hands on my Machine!!!
(05-04-2018, 11:04 AM)JesseLee Wrote: Dreambreather,

I'm not sure where you live, but I use Patient Aids in Lexington off of Man O War. They have been good to me. They don't care what I do so long as I'm using the machine and my numbers look good. I went in the other day to give them information from my machine and asked if I could buy some filters. They gave me half a dozen and told me to have a good weekend. Also, my machine was new open box, it didn't come with a travel case. Patient Aids gave me a new one. No charge.

Hi JesseLee,

The one I use is off Richmond Rd.  They've been awesome too... Not having any issues with DME, they just call say 'hey you're doing great!'.  I too received a new machine.

It was the Sleep DR himself, I saw today.
DreamBreather  Coffee
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#9
RE: They put their grubby hands on my Machine!!!
(05-04-2018, 12:04 PM)DreamBreather Wrote:
(05-04-2018, 11:04 AM)JesseLee Wrote: Dreambreather,

I'm not sure where you live, but I use Patient Aids in Lexington off of Man O War. They have been good to me. They don't care what I do so long as I'm using the machine and my numbers look good. I went in the other day to give them information from my machine and asked if I could buy some filters. They gave me half a dozen and told me to have a good weekend. Also, my machine was new open box, it didn't come with a travel case. Patient Aids gave me a new one. No charge.

Hi JesseLee,

The one I use is off Richmond Rd.  They've been awesome too... Not having any issues with DME, they just call say 'hey you're doing great!'.  I too received a new machine.

It was the Sleep DR himself, I saw today.

Pardon my confusion. Fortunately I only see a pulmonologist annually. I haven't had any issue with the doctor(s). I'm handled by an APRN and they whisk me in and out with a "how are you sleeping? Need anything? See you next year!" in between.
The wife sees a pulmonologist near Lex and they (doctor and staff) are very easy to get along with. I don't know your situation, but I'm always about patient empowerment. If you don't like the service, go down the road. There are some good ones.
Jesse


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#10
RE: They put their grubby hands on my Machine!!!
(05-04-2018, 12:32 PM)JesseLee Wrote:
(05-04-2018, 12:04 PM)DreamBreather Wrote:
(05-04-2018, 11:04 AM)JesseLee Wrote: Dreambreather,

I'm not sure where you live, but I use Patient Aids in Lexington off of Man O War. They have been good to me. They don't care what I do so long as I'm using the machine and my numbers look good. I went in the other day to give them information from my machine and asked if I could buy some filters. They gave me half a dozen and told me to have a good weekend. Also, my machine was new open box, it didn't come with a travel case. Patient Aids gave me a new one. No charge.

Hi JesseLee,

The one I use is off Richmond Rd.  They've been awesome too... Not having any issues with DME, they just call say 'hey you're doing great!'.  I too received a new machine.

It was the Sleep DR himself, I saw today.

Pardon my confusion. Fortunately I only see a pulmonologist annually. I haven't had any issue with the doctor(s). I'm handled by an APRN and they whisk me in and out with a "how are you sleeping? Need anything? See you next year!" in between.
The wife sees a pulmonologist near Lex and they (doctor and staff) are very easy to get along with. I don't know your situation, but I'm always about patient empowerment. If you don't like the service, go down the road. There are some good ones.

You are so right!! I'm all about self advocacy too!  The situation here recently has been that all the sleep centers are booked out about 6 months.  I was actually really lucky to get in on an 'emergency wait list'... Someone had an appt and they canceled, so I got to get in much much sooner.  Overall, I'm satisfied with my treatment.  It was just 'off-putting' to experience the resistance to my own successful treatment (of myself... LOL).  I've only read about such experiences here... Didn't really expect to be throwing blows to egos... but obviously, it happens for sure. Ha!

I'd be curious as to what process I'd be going through right now, had I never come here and learned what I needed in order to advance my treatment.  I'd probably still be feeling awful and moving at a snails pace with frustration about this whole CPAP thing.  And possibly Non-compliant!

The first thing out of his mouth was "Well an AHI under 5 is considered treated"... Yeah?? Big whoop!!  HOW DO I FEEL????!!!!  I feel GREAT because I surrounded myself with folks who know what's what... When I had an AHI of 2.87 I still felt horrible, but that's considered 'treated'.  Oh well, just a funny ordeal.  Damned if you do, damned if you don't.  

The bottom line is: I did what I needed to do in the first 44 days to get a better faster result.  Now I have an increased pressure (fixed) and fingers crossed that I don't suffer from Aerophagia....  (see, I know more than I should  Too-funny )
DreamBreather  Coffee
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