My advice is to talk to your doctor, and get his blessing on perscription changes, and then tell DME what you are doing. Play their game until compliance period is up.
05-07-2016, 09:48 AM
(This post was last modified: 05-07-2016, 09:49 AM by Mosquitobait.)
Change it to what you want it at. If the DME calls, tell them that it is not an accidental change. Remind her that while SHE is required to have a doctor's order to change pressures, you are not under such a requirement. Finally, just say that if your 'fiddling' doesn't substantially improve your situation, you will contact your doctor for recommendations.
My PA (and doctor) were fine with my making my own changes. They just wanted to be notified if I had to up it beyond 12.
You know it's really nice when the sleep doctor actually cares enough to get involved. I get the impression that many on this forum feel as i do, in that there is little help from the doctor. I have said this before but i have never met my sleep doctor. His name is on my RX and i was assured that he thoroughly analyzed my data before making the RX. I have only been able to talk to the technicians. Funny, but the last one, was petite, very attractive, and i caught myself thinking, "you don't even know what it's like to do cpap". Then i thought she probably worked at Jenny Craig previously and couldn't figure out why people are fat. I know, i'm drifting, but that's what we do when oxygen deprived. Not really.
By the way i had to beg by sleep doctor (technician) to give me an RX for variable pressure. Only when i mentioned the feeling of suffocating did i get any reaction. Probably just to shut me up. Well......it worked.
(05-05-2016, 06:30 PM)OMyMyOHellYes Wrote: Just tell them it is a sexual thing. Say nothing else...
I actually did that once with TSA airport security in Washington DC. I had a big handcuff key on my key ring that the TSA drone took an interest in. He asked what it was. I told him. He scuttled off to consult with another drone. The two of them called over a supervisor and consulted. I was getting pissed. Supervisor came over and asked what it was. I confirmed what it was. He then wanted to know why I needed it, what it was for, why I wanted to take it on the airplane, etc. Rather than school him on the legality of carrying keys or even cuffs onboard, I just stood straight up and in a loud tone, but short of shouting, I said "IT IS A HANDCUFF KEY. I CARRY IT BECAUSE I MAY NEED IT. IT IS A SEXUAL THING!" He dropped my keyring and I made my flight.
Just this one post made it worth reading up on the forum tonight!
I guess I lucked out--a sleep doctor (Internal Medicine) and DME that I can work with. I see my DME every three months (Medicare) and on last visit he asked if my doctor knew I was changing my settings. I told him his assistant did the first change on doctor's OK--CPAP 11 to APAP 10-14. I made several small adjustments--never over 14--no lower than 9. DME was concerned I didn't get too wild with my changes--which I haven't--and was supportive. According to SH 95% (or is it 90% on PR machines?) 11 was pretty close to good. I ran it 10-12 for awhile. Didn't see a lot of difference--AHI usually under 3 at most settings. Had to consider I changed masks from DreamWear back to Wisp, used a chin strap with Wisp, had knee replacement surgery and then had to deal with pain killers (not strong ones) and sleeping on my back. Pretty much maintained a 3 or a little lower. Went back to 11-11 APAP to get all the SH info before seeing my sleep doctor for a re-cert for my drivers license. I told him about SH and it was obvious I had been playing around for many months--he seemed impressed. I'm a pretty happy camper with both doc and DME!
Although a sleep doctor's blessing would be nice to shut the DME's sleep / respiratory therapist up, and any MD trumps them...so even if you have a good relationship with your GP and discuss it with them (who may have a better head in his/her shoulders than the DME and sleep doc) that may be all you need.
Personally, my former DME's RT thought anything 5 or less was perfect. Well, I have UARS (basically my body reacts faster to the stoppages in breathing....still wakes me up, but doesn't score apnea events...my at home test only had an AHI of 6, but an RDI of 50+, so sleep interruptions were a factor of 9-10x the AHI) and the RT's "Oh, it's under 5, you're fine" meant I was still having 40+ sleep disruptions an hour....under her "okie dokie" view, I was not getting any better.
I talked a bit to my GP and brought in a Sleepyhead plot. We discussed it a bit and a methodology to revise my settings (i.e. go to the 95% pressure number +/- a little and try it for 1-2 weeks, see what it did to the AHI and 95% number again, making small changes along the way). She was game and I got down to an AHI of <0.2...with the right mask, I managed to get an average AHI ~0.05 (which is absolutely ***** fantastic and I know that I'm one heck of a lucky guy to get there).
I was prepared for a fight with the DME and RT, but they didn't give a rat's rear end....they thought *they* were doing so good when, in fact, they hadn't done anything. In my mind, it was just one more example of how the DME sees you as a profit, rather than a patient.
My new DME and RT are much better....I told him when I first met him that I would either be his best patient or his worst (i.e. well informed, knows what is working or isn't, able to actively participate in my treatment vs. know when it isn't working / something is wrong and won't settle for less than optimum or put up with BS). Finding the right DME and learning for myself more about my condition and how to get the optimum treatment has made a huge difference. Don't give up on this one....it's your health and your body, you have every right to getting the most out of your treatment so don't settle for someone else's "good enough."
05-12-2016, 11:51 AM
(This post was last modified: 05-12-2016, 11:52 AM by justMongo.)
Indeed. The DME does not have the training, experience or license to prescribe *anything* or offer advice. Yes it's ok to tell them to jam it. I have before
and have taken my business elsewhere. They can't make any money by over charging my insurance company and then try to make me feel like I'm wasting THEIR time.
A good DME will instead be offering you lavish customer service since they ARE in essence leeching off your stream of cash so I
remind them of it if need be.
(I didn't get this grouchy by myself, The last DME helped a lot!)
"With ordinary talent and extraordinary perseverance, all things are attainable." - Thomas Foxwell Buxton
(05-12-2016, 11:51 AM)justMongo Wrote: redacted
I didn't see where you had dacted in the first place?
I am not a Medical professional and I don't play one on the internet.
Started CPAP Therapy April 5, 2016
I'd Rather Be Sleeping