sleep Dr. says I am not capable of doing my own data?

[Brenpbb11150]

Hello,
I have been on Cpap for two months...I have a machine that is data capable...I went to my Sleep Dr. last week and he went over my data information with me. I started asking him lots of questions about my data and he became very angry. He said that it is impossible for me to understand the charts without any guidance on this. I said that I have been following many posts on this site and everyone seems to think that taking control of your data is the best way stay on top of my thearpy. We have only one sleep Dr. in our town and I feel like I am really pushing it with him so I really don't know where to go from here. He said I could take my data card in once a week to the DME and I could get the information from her. {Something seems wrong with this picture} Where do I go from here?
Thanks
Bren

[Muse-Inc]

Read your own data for trends & be your own therapist. If you run into a snag, go immediately to the doc. Make sure you cooperate with the DME...at least until you own your machine. Many docs are threatened by knowledgeable patients who don't treat 'em as if the doc has ALL the answers you will ever need because they have a medical degree and you do not; well, fine, but they don't live in my body & that body has its own idiosyncrasies that I know & they do not. Some likely have likely seen patients do 'dumb' things because they have a little knowledge yet not enough to make good decisions.

My docs all know I view them as expert consultants; but treatment decisions are MY decisions because it's my body; it's my responsibility to do/take the treatment and report results good or bad for adjustment if needed. I don't expect my docs to have all the answers; they aren't God.

Be smart, ask, read, learn, reason, proceed with caution.

[cobra4x4]

Lets put it this way ....

If you do your own data analysis then they don't get paid for doing it. You are taking money away from them, if you take the card in then they can bill medicare or insurance for the service call.

[Wulfman]

Hello,
I have been on Cpap for two months...I have a machine that is data capable...I went to my Sleep Dr. last week and he went over my data information with me. I started asking him lots of questions about my data and he became very angry. He said that it is impossible for me to understand the charts without any guidance on this. I said that I have been following many posts on this site and everyone seems to think that taking control of your data is the best way stay on top of my thearpy. We have only one sleep Dr. in our town and I feel like I am really pushing it with him so I really don't know where to go from here. He said I could take my data card in once a week to the DME and I could get the information from her. {Something seems wrong with this picture} Where do I go from here?
Thanks
Bren

The doctor works for YOU. It's your money and you're paying him for his services. Basically no different than hiring a plumber, mechanic or computer consultant. (some of those can be egotistical shysters, too.)

You'll save yourself lots of money by purchasing your own card reader and the software to monitor your own therapy. It's not "rocket science"......and there are lots of people on the forum who can help you get started interpreting your data. Once you see the reports, you'll know your sleep doc is full of himself.

If you have the M Series Pro, as shown in your profile, you can get some of the data from the LCD the following morning.
The following instructions are for accessing the setup and also for clearing out the nightly totals so you can see each night's data by itself, rather than in averages. (and, clearing out that data does not affect what's being stored on the card)

You must have the "Show AHI/Leak Feature" set to "On" to see the data.


Den


Menu for M Series Pro

1. Hold down the <- -> buttons while plugging in the power on the back, wait for 2 beeps, release buttons.
2. Press the + key. <- -> buttons move to next field, -/+ keys decrement/increment
3. Check the following field(s):

-Therapy Mode = CPAP

-CPAP Pressure = NN (4 - 20 cm.)

-C-Flex Setting = (options are off, 1, 2 or 3)

-Ramp Time = (options are 05 to 45 min)

-Ramp Start Pressure = cm (Min. 4cm)

-Mask Alert Feature = On (On/Off)

-Auto Off Feature = Off (On/off)

-Show AHI/Leak Feature = On (On/Off)

Press On/Off button to exit.





==========Resetting LCD Display Data====================

To reset LCD Therapy data (does NOT erase any data from SmartCard):

1. Hold down the (<-) (->) buttons while plugging in the power on the back,
wait for 2 beeps or 5 seconds, release buttons.
2. Press the (->) key and navigate to Therapy screen.
3. Press and HOLD down the (-) minus key for 5 seconds and/or until therapy data is reset to Zero.
4. Press the (->) key to scroll back to main menu, press (+) key to enter Setup or
On/Off button to exit.

[jnk]

. . . he went over my data information with me. . . .

Then he is already better than most docs.

. . . I started asking him lots of questions about my data and he became very angry. . . .

Those two facts may be unrelated. Or he may have perceived the way you worded your questions as being a challenge more than a discussion. Or he may be a total jerk. Hard to say. But if he got angry, you should apologize, if you keep him. Unless you wanted to make him angry.

. . . He said that it is impossible for me to understand the charts without any guidance on this. . . .

It is impossible for you to become a doctor overnight, true. He may have had his feelings hurt if he wanted to teach you something but got the feeling you didn't respect his knowledge. It can help to play dumb and let docs talk. Most docs want to believe they actually learned something at med school. It is not usually a smart move to try to convince them otherwise.

. . . I said that I have been following many posts on this site . . . .

I believe that reading on this site is the smartest thing any PAP patient can do. But telling a doc you are doing it is an iffy thing. They hear that as, "Dude, I don't need anybody who has been to medical school--I've got the Internet!" Docs know the Internet is full of disinformation. Heck, there is plenty of it on this board, for that matter. That is why it is important to learn which posters know their stuff and which don't. So I would try not to tell my doc anything that might scare him. Some docs spook easy.

. . . He said I could take my data card in once a week to the DME and I could get the information from her. . . .

That works for some. But it's a bit of a hassle for most. The main thing is that you get good leak and efficacy data and learn what it means so you can make sure your therapy is as good as it can be.

I'm not trying to take an arbitrary position, but those are my thoughts, for whatever they are, or aren't, worth, as far as not spooking your doc. If he's a good guy, apologize. If he isn't, and your therapy is going well, who needs him, right?

jeff

[Brenpbb11150]

Thank-you Wulfman and JNK for the good information...I always love to come to this forum and know that I can always get some good feedback on anything I post. This is how I end my day by reading so much great information.
Thanks again
Bren

[Slinky]

jnk is so right about how you present your questions and how much you tell your sleep doctor about where you got your information affects their response.

It sounds like you may have some "undoing" to do since he's the only game in town. HOWEVER, somewhere in my "apology" I would HAVE to let him know just how INSULTING his comment "it is impossible for me to understand the charts without any guidance on this" was. Of course, you realize that you need some guidance, that was what you were counting on him for. You just didn't realize that the guidance should come from your provider's RRT. You assumed that your guidance would come from your DOCTOR. You just want to be able to recognize when and if you need to contact him for help.

[JohnBFisher]

... Where do I go from here? ...

Well, I often try to move the discussion at a right angle to try for everyone to gain perspective.

In addition to sleep apnea (obstructive and central), I also have Type 2 Diabetes. When I discussed having a data capable machine and wanting to keep an eye on the data, my doctor also asked why. Instead of being defensive - though in fairness he was calm about the why - I suddenly moved the discussion in right angles. Here's the

Me: So, I have Type 2 Diabetes.
Doc: Yes, I see that in your chart.
Me: Only a few years ago, diabetics did not have any way to track their therapy.
Doc: Yes ...
Me: But now, I'm encouraged to check my blood glucose numbers regularly.
Doc: And ... ?
Me: Well, how is sleep apnea any different than diabetes. Both are chronic conditions. Both are slow killers. Both can lead to heart attacks, stokes, excessive daytime sleepiness and can eventually lead to premature death.
Doc: Yes ...
Me: Well, with the nightly data, I can better track mask leaks and if the data is unusual, I can come to you with more than an "I feel bad". You can see why I might feel bad. You will have useful data to help move us to a solution.
Doc: But it does not replace a sleep study !
Me: Did I say that? Think of this more as a wind sock that I use to figure out the general direction and strength of the wind. That can help you save valuable time and money by knowing - generally - where to look.
Doc: Well, data capable machines is the general direction of the industry ... I just can not interpret the data every night ...
Me: Trust me, I understand that.

Since then I have brought data to him that has been helpful to help him help me. He's pleased and excited that he has a patient who "gets it".

[paolo]

Hi Den,

Will that work on a REMstar Auto A-Flex?

I tried it but I couldn't find an "on/off" button to end with.

I would love to be able to do this.

Thanks,

Mitchell

[RLAUREN]

This kind of reminds me of a favorite question. "What are the 2 best ages in life?" 7 and 17! At 7 you have all the questions and at 17 you have all the answers.

Come here or go to the Doctor with all the answers, you will not learn anything or improve your treatment. Go with informed questions you will learn a lot.

I saw a lot of feathers get ruffled in another thread where it was asked the long term effects of xPAP. See what happens when questions are percieved as challenges. For long term relationships (you and your doctor) IMHO I think you want to set a learning relationship and not a challenging relationships. Doctors and Patients have a lot to learn and grow.

[Slinky]

Ahhh, JohnB, if ONLY I had the tact and diplomacy of you and jnk!!! *sigh* I'm like a darn three legged elephant in a china shop. *sigh* No tact, and very little diplomacy.

[Wulfman]

Hi Den,

Will that work on a REMstar Auto A-Flex?

I tried it but I couldn't find an "on/off" button to end with.

I would love to be able to do this.

Thanks,

Mitchell

Which button do you push to start or stop it?
It's the middle one with the circle thingie in it.

I presume this is your machine?

https://www.cpap.com/productpage/2486


Den

Actually, these are the instructions for the Auto M w/A-Flex

Hold down the <- -> buttons while plugging in the little power cord in the back, wait for 2 beeps release buttons. Then press the + key to enter setup mode, use the <- -> buttons to move to the next field, use the -/+ keys to decrease/increase values, when set press the On/Off button to exit Setup.

Therapy Mode = CPAP/AUTO (If Auto is selected, there will be A-Flex or C-Flex options)
CPAP Pressure = NN (only appears in CPAP mode).
AutoMax = 20 cm (default)
AutoMin = 4.0cm (default)
C-Flex Setting = Off, 1, 2 or 3
Ramp Time = (0:05 to 0:45)
Ramp Start Pressure = 4.0cm (can be from 4cm to AutoMin pressure).
Mask Alert = On/Off (beeps on large leak, mask removal).
Auto Off = Off (turns off machine on large leak/mask removal) Suggest leaving it "Off"
Split Night Time = Off (options are Off, 120, 180, 240) Should be "Off"
Show AHI/Leak = On (enables logging to display) Suggest leaving it "On"
Patient Reminder = Off (days to remind you that you get a new mask w/Insurance).
returns to Therapy Mode
Pressing On/Off exits Setup



==========Resetting LCD Display Data====================

To reset LCD Therapy data (does NOT erase any data from SmartCard):

1. Hold down the (<-) (->) buttons while plugging in the power on the back,
wait for 2 beeps or 5 seconds, release buttons.
2. Press the (->) key and navigate to Therapy screen.
3. Press and HOLD down the (-) minus key for 5 seconds and/or until therapy data is reset to Zero.
4. Press the (->) key to scroll back to main menu, press (+) key to enter Setup or
On/Off button to exit.

[JohnBFisher]

Ahhh, JohnB, if ONLY I had the tact and diplomacy of you and jnk!!! *sigh* I'm like a darn three legged elephant in a china shop. *sigh* No tact, and very little diplomacy.

Remember, it took me nearly 20 years to find a sleep specialist who took my symptoms seriously and TESTED to validate the issue. Sure enough. I'm not breathing like I should. Sure enough, I was in seriously bad shape. And the untreated central sleep apneas SERIOUSLY damaged my health. I am fairly certain it led to both my diabetes, very high blood pressure (even with lots of medication) and - as a result - kidney issues!

So, even when I try to use such tact and diplomacy, it doesn't always help. During my last visit my neurologist admitted that "we should have probably had you on a ASV unit all along". Of course, it's only been available for the past two or three years. But that honest bit of reflection is why I like this doctor. I won't hold that against him. I should have gone to him sooner and should have gone back when it was not working well.

Sometimes not rocking the boat is not a good idea.

[jnk]

Ahhh, JohnB, if ONLY I had the tact and diplomacy of you and jnk!!! *sigh* I'm like a darn three legged elephant in a china shop. *sigh* No tact, and very little diplomacy.

Remember, it took me nearly 20 years to find a sleep specialist who took my symptoms seriously and TESTED to validate the issue. Sure enough. I'm not breathing like I should. Sure enough, I was in seriously bad shape. And the untreated central sleep apneas SERIOUSLY damaged my health. I am fairly certain it led to both my diabetes, very high blood pressure (even with lots of medication) and - as a result - kidney issues!

So, even when I try to use such tact and diplomacy, it doesn't always help. During my last visit my neurologist admitted that "we should have probably had you on a ASV unit all along". Of course, it's only been available for the past two or three years. But that honest bit of reflection is why I like this doctor. I won't hold that against him. I should have gone to him sooner and should have gone back when it was not working well.

Sometimes not rocking the boat is not a good idea.

Very well said, JohnBFisher.

[paolo]

Thanks Wulfman. I'm a little thick but I got it now.

Best,

Mitchell