Locked out

I'm one of those people that really wouldn't know if the treatment was doing its job if I couldn't get the data from the machine. Why? I still feel tired all the time because of other issues at play. The data, though, shows good compliance, good AHI, and good leak rates, so I know it's keeping the A/H at bay and reducing my risk of some major health issues. When I got my machine home, the AHI and leak rates were in the "secret provider menu." I also couldn't change C-Flex to any number other than where the DME set it at 3--couldn't turn it off either. Couldn't change the ramp time or pressure.

Since finding this site, I have a pdf copy of the provider/clinician manual and know how to access and change everything.

I keep hearing people say it's not legal to change your own pressure--where does that come from? What's the difference between that and other medical things we're "allowed" to do on our own like: I have a bottle of Prozac and a bottle of lorazapam--what's to keep me from taking them all at once? I keep the serum for my son's allergy injections in the fridge. What's keeping me from getting a syringe and using it all on me? My friend has control of her diabetes insulin injections--what's to keep her from using more of that than she should? A lot of people with asthma use nebulizers, breathing in a liquid medication that's been turned into a kind of mist--what's to keep a person from using too much?

Sorry this is so long--It's just an area that really irks me--can you tell!!


Pam

WearyOne wrote:I keep hearing people say it's not legal to change your own pressure--where does that come from? What's the difference between that and other medical things we're "allowed" to do on our own like: I have a bottle of Prozac and a bottle of lorazapam--what's to keep me from taking them all at once? I keep the serum for my son's allergy injections in the fridge. What's keeping me from getting a syringe and using it all on me? My friend has control of her diabetes insulin injections--what's to keep her from using more of that than she should? A lot of people with asthma use nebulizers, breathing in a liquid medication that's been turned into a kind of mist--what's to keep a person from using too much?

I do agree with you, Pam, except for the taking your son's serum for yourself -- that (I think) may be a violation of federal prescription laws (as it's medicine intended for someone else). But if you have a valid prescription for an item (CPAP machine) and you take it upon yourself to change the way you use it because you think it will make you feel better, I see no issue with that.

However, if it makes you feel worse, you can't really blame the machine or the doctor... "Gee Doc, I know you told me to take my sleeping pills in the evening, but I've been taking them each morning, and I've been so tired all day!"
You have some greater responsibility than if you just followed orders. I imagine that's why the DME rep who is "obliged" (by his company's policy) to reset a machine to the prescribed pressure has that rule -- if something goes wrong with the patient and they sue, I suppose their "rule" serves to help deflect (legal) responsibility from the DME to the doctor.

My sleep doc verbally told me I could switch my pressure from 7 to 10 because I was using a Hybrid mask (unsuccessfully). His assistant (who delivered the message) said that it's a "trial and error" thing to get the pressure setting right. When I told her I knew how to change the pressure, she said "by all means do it, we're kind of experimenting here".

Someone here once referenced part of Indiana law:

http://www.in.gov/legislative/ic/code/t ... 5/ch3.html

Information Maintained by the Office of Code Revision Indiana Legislative Services Agency wrote:IC 25-34.5-3-5
Conditions for operation of equipment by health care nonprofessional
Sec. 5. An individual who is not licensed, registered, or certified as a health care professional may deliver, set up, calibrate, and demonstrate the mechanical operation of respiratory care equipment in a residential setting only when the following conditions are met:
(1) The individual's employer documents that the individual has obtained adequate training and demonstrated competence under the supervision of a practitioner or other licensed, registered, or certified health care professional.
(2) The individual does not teach, administer, or practice respiratory care.
(3) The individual does not attach the respiratory care equipment to the patient or instruct the patient, the patient's family, or the patient's caregiver on the equipment's clinical use as a treatment device.
(4) All instructions to the patient, family, or caregiver regarding the clinical use of the equipment, patient monitoring, patient assessment, or other procedures designed to evaluate the effectiveness of the treatment are performed by a practitioner or other licensed, registered, or certified health care professional.

You'll note that requirement 3 is particularly interesting, since my RT did exactly that.

So I'm sure you'll get lots of comments on the advisability of adjusting your own pressure, but we have yet to hear one that actually addresses the legality and shows us it's illegal.

The thread I'm referencing can be found here:
viewtopic.php?t=3366

johntee, yes, I should have said my son, who is 18, could inject himself with as much serum as he wanted, not me, as the serum is his. And if all physicians were like yours and were so open to working with you, admitting that it can be a trial and error thing, wouldn't that be great?

I would never blame a physician if I didn't take or use something as directed. If I make the changes, I'm responsible for them. After a problem I was having at 9, doc recommeded going to 8 and sent a script to the DME for the change. I never went in and changed it myself. That wasn't working well, so I bumped it up to 8.5 on my own. (My sleep study showed 8 most of the night, and 9 for a little while on my back.) I have also made changes to C-Flex on my own, which really has little to do with therapy, but a lot to do with comfort and compliance for a lot of people.

I can sort of understand a physician's reluctance to a patient changing his/her own pressure (don't agree, but understand). What really doesn't make any sense it not allowing access to data like AHI and leak rates, or changing non-theraeutic stuff like C-Flex or the time ramp is set for. Or making the software easily available for tracking therapy.

I should probably stay out of this, because I'm in one of those moods today.

Pam

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CPAPopedia Keywords Contained In This Post (Click For Definition): C-FLEX, AHI, Ramp

WearyOne wrote:I should probably stay out of this, because I'm in one of those moods today.

you probably just had a bad night's sleep is all...

(Oh and by the way, I just wanted to be sure you realized that my sentences like "you can't really blame the machine or the doctor..." were not referring to YOU specifically. It was a general "you", as in anyone who decides to tweak the Dr's orders, so I hope you didn't think I was taking you to task... I do agree with you.)

johntee wrote: you probably just had a bad night's sleep is all...

Actually, I woke up with my hose disconnected from my mask, the bottom left clip undone, and the mask halfway up my face--machine still running! Second time this week with something similar, and it's never happened before. So you're right, that's probably it.

Pam

blarg wrote:

Someone here once referenced part of Indiana law:

--snipped--

(3) The individual does not attach the respiratory care equipment to the patient or instruct the patient, the patient's family, or the patient's caregiver on the equipment's clinical use as a treatment device.

You'll note that requirement 3 is particularly interesting, since my RT did exactly that.

So I'm sure you'll get lots of comments on the advisability of adjusting your own pressure, but we have yet to hear one that actually addresses the legality and shows us it's illegal.

The thread I'm referencing can be found here:
viewtopic.php?t=3366

I think it's legal in all states, including Indiana, for RRTs (Registered Respiratory Therapists) to perform the duties in #3. Performing CPAP setups would fall legally within the scope of their job, as far as I know. Dunno if it would be a grey area, though, for an RT who wasn't a registered respiratory therapist.

You are correct rested gal.

There are 2 different credentials currently for RT's, CRTT (Certified Respiratory Therapy Tech) and RRT (Registered Respiratory Therapist). In MOST states for legal purposes CRTT's and RRT's are viewed exactly the same, and in most hospitals they are responsible for the same duties.

Most DME techs hold no Medical credentials at all, so they can only set the machine up for you and show you how to operate the controls, nothing more.


One note: I'm sorry if I dredged up an old discussion about the legality of changing ones CPAP pressure, that was not my intent when I posted the information that I did. My only intention was to try to keep those of you that are intrested, informed of changes that may be comming tha could affect the treatment that you are recieving.


Darin

akcpapguy wrote:One note: I'm sorry if I dredged up an old discussion about the legality of changing ones CPAP pressure, that was not my intent when I posted the information that I did. My only intention was to try to keep those of you that are intrested, informed of changes that may be comming tha could affect the treatment that you are recieving.

At least in my eyes you have nothing at all to be sorry for. I really appreciate having someone on the DME side that isn't afraid of licking their finger and sticking it up in the air. It's nice to know how windy it is over there.

blarg wrote:

akcpapguy wrote:One note: I'm sorry if I dredged up an old discussion about the legality of changing ones CPAP pressure, that was not my intent when I posted the information that I did. My only intention was to try to keep those of you that are intrested, informed of changes that may be comming tha could affect the treatment that you are recieving.

At least in my eyes you have nothing at all to be sorry for. I really appreciate having someone on the DME side that isn't afraid of licking their finger and sticking it up in the air. It's nice to know how windy it is over there.

What are you saying?

blarg wrote:

akcpapguy wrote:One note: I'm sorry if I dredged up an old discussion about the legality of changing ones CPAP pressure, that was not my intent when I posted the information that I did. My only intention was to try to keep those of you that are intrested, informed of changes that may be comming tha could affect the treatment that you are recieving.

At least in my eyes you have nothing at all to be sorry for. I really appreciate having someone on the DME side that isn't afraid of licking their finger and sticking it up in the air. It's nice to know how windy it is over there.

Ditto.
I believe that I was actually the one that made reference to the old worn out line that we'd been getting for a long time.

I/we appreciate the "heads-up" with regard to what's happening on your side of the fence. It's always nice to get that perspective.

Best wishes,

Den

Anonymous wrote:What are you saying?

Exactly what I said. It's nice to have someone on the DME side that isn't afraid of commenting on which way the wind is blowing, and what possible future things are coming down the pike.

Blarg and Wulf,

Thanks for the words guys. That statement wasn't really aimed at either one of you guys. I guess sometimes I just get frustrated seeing the same dead horse being kicked around again. Then again on the other hand my dad always said, sometimes you have to prop the dead horse up on a stick and see if you can kick it from a different angle.


Darin

Well, and I know there are good DMEs out there, I just don't have one. Heck they still think I'm using a Comfort Gel with an M Series Auto. lol. I can't wait for them to send me supplies that I didn't ask for.

"This filter doesn't fit in my machine."
"No, it does."
"No, it doesn't."

lol.

In regard to doctors or others knowing whether you changed settings, this does seem possible for the Silverlining software in its usual usage.

It records the various settings. This is very useful if you or a doctor wants to go in and see if apneas were lower when the pressure was at 12 rather than 10. I do not know the other software oiut there, but this is a feature I would certainly want if I was designing a system. It is awkward to have to write down a history of what settings changed (not to mention risking erros).

Of course, I assume you can always erase data you wish to keep private (and smarter programmers probably know how to change things).

Ideally you and your doctor would sit down with the records and discuss them. Admittedly, some doctors may not want to do this.

It appears that due to my large financial resources <g> I was able to afford a card reader ($24) bought from the technically avanced country of Hong Kong, which leaves me a little better equipped apparently that the GW University Hospital clinic I use. (assuming I was given the right information by the doctor I asked to read my card). He did agree that if asked the r3espironics representative would probably give them a free one (nice to know this firm has sympathy for financially hard up hospital <g>).