Losing confidence in doc, what to do
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Losing confidence in doc, what to do
I've been on CPAP for years. It worked well for a while, then started losing its benefit. I had confidence at one time in the physicians assistant at the local university hosptial/sleep clinic/neurology but she dropped the ball the last time i was loaned an apap machine. she was faxed the titration results but never responded. I'm so miserable I'm tempted to go it alone, buy an auto cpap machine and try to get some relief that way. Has anyone here ever had any success "self-treating" like that? Right now, I have to go out to my car on my lunch hour and nap for 40 minutes. Pure hades. What does one do when one loses confidence in one's health care provider.? I do know this is no way to live. I'm hardly even alive.
Thanks for reading.
Tom
Cpap machine (s) Resmed Elite, Escape; using the Escap right now
mask: Full face quattro mirage
setting: 12
Thanks for reading.
Tom
Cpap machine (s) Resmed Elite, Escape; using the Escap right now
mask: Full face quattro mirage
setting: 12
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Re: Losing confidence in doc, what to do
Your life is your business.
As a business owner it is up to you to have staff that helps you in certain areas that you are not trained or experienced in.
Your medical team is paid by you and you should expect the best performance from them. If they fall short, fire them and replace them.
As a business owner it is up to you to have staff that helps you in certain areas that you are not trained or experienced in.
Your medical team is paid by you and you should expect the best performance from them. If they fall short, fire them and replace them.
_________________
Mask: Brevida™ Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Machine is an AirSense 10 AutoSet For Her with Heated Humidifier. |
SpO2 96+% and holding...
Re: Losing confidence in doc, what to do
Sorry to read this... You need to find another Doc who will be some help. I see in your profile that you are using a brick
so NO way to tell what is happening with your therapy.
Many people here do go it alone.. The people here have alot of wisdom and could probably guide you along.
I wish you well...
so NO way to tell what is happening with your therapy.
Many people here do go it alone.. The people here have alot of wisdom and could probably guide you along.
I wish you well...
_________________
Machine: DreamStation BiPAP® Auto Machine |
Mask: Zzz-Mask Full Face CPAP Mask with Headgear |
Humidifier: DreamStation Heated Humidifier |
Additional Comments: Settings are IPap 23 EPap 19 |
- Nick Danger
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Re: Losing confidence in doc, what to do
I suspect you could do a fine job with an autocpap machine. We have a number of people on the forum who would be able to help you make sense of the data and self-titrate.
_________________
Machine: ResMed AirSense™ 10 AutoSet™ CPAP Machine with HumidAir™ Heated Humidifier |
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
Additional Comments: APAP mode, minimum pressure = 9. No ramp, EPR = 3, medium. Soft cervical collar. Sleepyhead software. |
- Wulfman...
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Re: Losing confidence in doc, what to do
I dumped my sleep doc a few weeks after getting my equipment.......and using data-capable machines have been on my own for nearly 10 years. The first year, I tweaked my therapy with a straight-pressure CPAP. It's not that hard to do. Unless you have complicated therapy......like lots of Central Apneas, you should be able to figure it out with a data-capable machine and software to read the data.tommyheadleycox wrote:I've been on CPAP for years. It worked well for a while, then started losing its benefit. I had confidence at one time in the physicians assistant at the local university hosptial/sleep clinic/neurology but she dropped the ball the last time i was loaned an apap machine. she was faxed the titration results but never responded. I'm so miserable I'm tempted to go it alone, buy an auto cpap machine and try to get some relief that way. Has anyone here ever had any success "self-treating" like that? Right now, I have to go out to my car on my lunch hour and nap for 40 minutes. Pure hades. What does one do when one loses confidence in one's health care provider.? I do know this is no way to live. I'm hardly even alive.
Thanks for reading.
Tom
Cpap machine (s) Resmed Elite, Escape; using the Escap right now
mask: Full face quattro mirage
setting: 12
A ResMed Elite machine is fully data-capable. Which "generation" of machines are you using? S7 - S8 - S9?
Den
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(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
Re: Losing confidence in doc, what to do
We have many forum members who have not only self titrated but self diagnosed.
If all that is going on is plain jane vanilla obstructive sleep apnea with no complicating factors. Takes a bit of work and education on your part but it isn't all that difficult.
Here's a trusted forum member with the latest ResMed APAP machine available.
viewtopic/t105070/For-Sale--New-AirSens ... t-650.html
or if that is a little too costly I know of a couple of forum members with some gently used apap machines.
Send me a private message if you want more information on those gently used machines.
If all that is going on is plain jane vanilla obstructive sleep apnea with no complicating factors. Takes a bit of work and education on your part but it isn't all that difficult.
Here's a trusted forum member with the latest ResMed APAP machine available.
viewtopic/t105070/For-Sale--New-AirSens ... t-650.html
or if that is a little too costly I know of a couple of forum members with some gently used apap machines.
Send me a private message if you want more information on those gently used machines.
_________________
Machine: AirCurve™ 10 VAuto BiLevel Machine with HumidAir™ Heated Humidifier |
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I may have to RISE but I refuse to SHINE.
If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.
If you want to try the Eclipse mask and want a special promo code to get a little off the price...send me a private message.
Re: Losing confidence in doc, what to do
I was fortunate that after I walked out of my titration study after a panic attack, I was able to request a full data auto CPAP in order to find the right settings for me -- based on something I read in the forums. Armed with data and a bit more knowledge (learned in the forums), I requested a change in my settings -- using the medical professionals as a tool to get that change based on a conversation about the data. While it is possible to go it alone -- having a full data machine, pulling your own data and learning as much as you can about it, gives you ammunition to use to work with the medical professionals to optimize your therapy.
_________________
Machine: PR System One REMStar 60 Series Auto CPAP Machine |
Mask: AirFit™ P10 Nasal Pillow CPAP Mask with Headgear |
Additional Comments: Auto setting 9.5 - 15.0 | SleepyHead, EncoreBasic & Sleep Master software | Highly motivated tinkerer |
- Wulfman...
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Re: Losing confidence in doc, what to do
And, if you have a physical copy/original of your prescription, you should be able to order any CPAP machine from an online provider/seller like https://www.cpap.com
Den
.
Den
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(5) REMstar Autos w/C-Flex & (6) REMstar Pro 2 CPAPs w/C-Flex - Pressure Setting = 14 cm.
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
"Passover" Humidification - ResMed Ultra Mirage FF - Encore Pro w/Card Reader & MyEncore software - Chiroflow pillow
User since 05/14/05
- Sheriff Buford
- Posts: 4084
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Re: Losing confidence in doc, what to do
I have never seen a sleep doctor... no need... thanks to this Forum.
Sheriff
Sheriff
_________________
Machine: AirSense 11 Autoset |
Mask: Mirage Quattro™ Full Face CPAP Mask with Headgear |
Re: Losing confidence in doc, what to do
Have you got copies of the report from your loaner machine? I would suggest you get copies of all your medical records, particularly tests results, before you cut ties. It may be that non patients have to jump through more hoops to get their records, not sure about with your doc. If you don't have another doctor, maybe just leave this relationship in limbo - just in case you need paperwork completed or scripts. It might be in your best interest to see those reports before buying a machine, just in case there's something in there that indicates need for a particular type of machine.
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Mask: TAP PAP Nasal Pillow CPAP Mask with Improved Stability Mouthpiece |
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Additional Comments: Bleep/DreamPort for full nights, Tap Pap for shorter sessions |
My SleepDancing Video link https://www.youtube.com/watch?v=jE7WA_5c73c
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Re: Losing confidence in doc, what to do
Thank you, I really appreciate it. I'm glad I've joined this forum because as you note, they have a lot of wisdom.Bill44133 wrote:Sorry to read this... You need to find another Doc who will be some help. I see in your profile that you are using a brick
so NO way to tell what is happening with your therapy.
Many people here do go it alone.. The people here have alot of wisdom and could probably guide you along.
I wish you well...
Tom
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- Posts: 12
- Joined: Thu Jun 27, 2013 12:16 pm
Re: Losing confidence in doc, what to do
Amen to that! My feelings exactly. I certainly don't mind firing them! I'm determined to seize control of my life again so that I won't decline further cognitively. However, I don't want to inadvertently act against my own interests which is why I've joined this helpful forum.HoseCrusher wrote:Your life is your business.
As a business owner it is up to you to have staff that helps you in certain areas that you are not trained or experienced in.
Your medical team is paid by you and you should expect the best performance from them. If they fall short, fire them and replace them.
Thank your for replying.
Tom
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- Joined: Thu Jun 27, 2013 12:16 pm
Re: Losing confidence in doc, what to do
This is sooooo helpful. It's just the reality check I needed. Get copies first. Cut ties when and only when it makes good sense. Don't burn bridges , leave the relationship in limbo. It can't hurt anything. Acting too hastily, you've made me realize, without getting all the information I can, will just make me have to start all over.kteague wrote:Have you got copies of the report from your loaner machine? I would suggest you get copies of all your medical records, particularly tests results, before you cut ties. It may be that non patients have to jump through more hoops to get their records, not sure about with your doc. If you don't have another doctor, maybe just leave this relationship in limbo - just in case you need paperwork completed or scripts. It might be in your best interest to see those reports before buying a machine, just in case there's something in there that indicates need for a particular type of machine.
Thanks very much,
Tom
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Re: Losing confidence in doc, what to do
Ah, this is so confidence inspiring. Some hope, after all. Thanks for telling me this. Really.Sheriff Buford wrote:I have never seen a sleep doctor... no need... thanks to this Forum.
Sheriff
Tom
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Re: Losing confidence in doc, what to do
This is exactly my long term goal. Exactly. It's really comforting to know that other people are doing it and that I can lean on them for a bit of guidance and learn how to self-titrate.Nick Danger wrote:I suspect you could do a fine job with an autocpap machine. We have a number of people on the forum who would be able to help you make sense of the data and self-titrate.
Thank you,
Tom