My Doctor's staff are not happy...

[ChicagoGranny]

Screw the doctor, is the patient happy?

More importantly, did they get to the root cause?

[Gryphon]

It does make me sigh and also role my eyes at the reactions I get mostly from RT's when you mention knowing how to get into the settings menu of your XPAP. It's like you just let slip that your some sort of criminal or you study the black arts for fun in your spare time.

Ether there tons of seriously dim people (stories we don't hear about) who like to blindly muck around in their CPAP's like throwing darts at a wall blind folded, killed them selves etc... "died of centrals, or used too high a pressure, blew up like a party balloon and popped, gruesome death, closed casket and all that. Maybe we all get lumped into the same room with those Darwin award winning idiots... Though if this were true, I think we would have heard about in the news or something. "Person accidentally kills them selves with CPAP, Spouse is utterly distraught, Story at 11"

I'm just not sure were it all comes from. You ether get people who love to work with you and encourage self study and empowerment. Not often... Or you get people who are stuck in a "Script Rut" like they don't want anyone to do anything other then what the doctor says. Maybe they're worried we'll change something and then sue them for it. Now and then then you can show people printouts of data and how changes made from the original norm have improved your numbers with XPAP and health overall. Sometimes I get a "Huh, well ok, cool. You keep doing that and let me know if you need anything." One of my doctors put the print outs from my sleepy head into my actual medical record for his office. "Hope that was ok"

Usually you can get the results you want or need if your doing it your self, but you have to be ready to back up every little detail with data or an argument that makes sense.


IE: My newest sleep doc looked at my numbers which weren't "BAD" and wanted to pat me on the back and send me home with a come and see me again in 6 months to a year... but I wasn't satisfied with that. I had brought printouts from sleepy head showing the behavior of my machine and how it had been peeking at 19 and 20 every night since I'd gotten it. I wanted to try to switch from an Auto-PAP to a BiPAP so I could see if increasing my pressure ceiling from 20 to 25 would help even more. (First thing he said, which worried me a bit) was that the BiPAP topped out at 20 also and there wouldn't be any difference... I was like ummm no.... BiPAP's go higher. He calls in one of his "Techs" that agrees with me that BiPAP's do indeed go higher on the top end. (Then my doctor mentions that BiPAPs are almost always prescribed when patients can't handle the pressure of a normal CPAP/APAP and need more pressure support, but that I was handling PAP therapy just fine) I told him that I understood that but that it didn't matter - that's not why I wanted to try BiPAP...

It does get anoying when people don't listen to what your saying in the first place, "I'll admit I can be a bit wordy but still, I think I get my point across, don't I?"

A bit of back and forth and looking at my print outs again and he said he'd order a BiPAP for me but that to make my insurance happy he would order a "BiPAP" titration study. The study was a disaster on multiple fronts, not the least of which was having no AC in the room. "Oooh, we had a lot of complaints about the ice cold rooms you just walked past. Sorry you won't be using one of those, they're not setup for studies - you'll have to sleep in this room." Opens up door to an over sized sauna with a welcoming smile.

Second, was that to do a "BiPAP" study you have to use a PS of 4 or more through out the study... "they didn't get the memo that I was after higher pressure, not more PS" Was not happy about that as I couldn't sleep with the added PS. Later I would figure out that the Ti Min and Max were set funny as well because the machine kept changing pressure when I was still breathing in or out etc... I think I got a total of maybe 140 min of actual sleep in the study and when I woke up - it was before they woke me up because they had been mucking with the settings and had me at a PS of like 6 and that's what woke me up. No idea what they were thinking.

OK, Study tech comes in and starts talking utter nonsense about BiPAPs and giving me the feeling that the whole night was a waste of time "Which it was... but I thought that meant I wasn't going to get my BiPAP"

So after all of that - I get my BiPAP and used it with the weird as heck settings for a few days - was getting tons of centrals... "hey I was fair, I collected data like a good little PAPer, before I went in and said the heck with this" I tweaked the PS and lowered it and centrals went away. Later on from self exploration learned what the Ti Min and Max settings do and tweaked those "Would have been nice to know about that the night of the study." The higher pressure ceiling has come in to play on some nights but never over 23. My numbers improved overall so that now I average under 1 AHI and bad nights are maybe 2 or 3 AHI.

I called up the doc to let him know what I'd done. He was cool with it after I got past his nurse who wasn't happy. The DME wasn't happy ether, but I'm happy and that's what matters I think, the rest of them can get over it. I'm happy my Doc is happy though. Trying to find another one would be a pain in the back side.

Sorry for the long winded message.

Hope everyone's doing well. Happy PAPing and sleep well.

Gryphon

[Midwest_non_sleeper]

Screw the doctor, is the patient happy?

The patient was NOT happy at 5m20m, but is very pleased with 7m20m so far. Those two small increments have made a world of difference.

[Midwest_non_sleeper]

/snip
Hope everyone's doing well. Happy PAPing and sleep well.

Gryphon

I have seven weeks of SH data ready to go for that very reason, to assist in my explaining why I made the change if it comes to that. I was not doing well with the min set to 5, I was constantly adjusting the mask, taking it, ripping it off in my sleep, waking up gasping, etc. But at 7, I sleep like a sedated baby. But, my opinion is, any sleep doc worth their salt won't even look at it, but instead will ask "After the change, are you feeling better than you were before you changed it? Yes? Good enough for me, good job."

[D.H.]

Is there really a threat to take any action that is adverse to you?

I'm wondering if the doctor - or his office - just want to protect themselves from any potential liability.

What liability? It's not against any law to set the pressure on a XPAP, more so if you own it. Jim

If you rent a car, is it against the law to push on the gas pedal to make it move!

Not criminal violation, but that doesn't mean it can't go to court (even if the doctor prevails in the end).

[zoocrewphoto]

Before I fired my DME for lying about the headgear I needed (They said it didn;t exist in a small size); my DME was shocked that I had gone in and changed the TIME on my machine.

Um, I am a severe night owl. I sleep past noon most days, and I would like to see my data in full nights, not parts of 2 different nights.

My actual sleep doctor? He was impressed when I told him I had already looked at my data. I gave him a copy of the lead page of this website. He was thrilled to see that people were getting help. I didn't have to change my settings, but after my followup, I let my mom use my machine for two partial nights. One night at her current prescription setting of 10 (she had a few clusters of LONG events). Then a night with 10-13. I printed the results, and we went in together. The doctor asked to shake my hand. ANd he prescribed her a new machine set for 10-15. She's doing better too.

[chunkyfrog]

Re: "doing no harm" --does it apply to the DME? (Or just the doctor?)
Keeping the REAL manual and the REAL menu away from patients can, and HAS
caused a LOT of harm!
It is time we held their feet to the fire and taken some of these "rascals" to court!

[prodigyplace]

Re: "doing no harm" --does it apply to the DME? (Or just the doctor?)
Keeping the REAL manual and the REAL menu away from patients can, and HAS
caused a LOT of harm!
It is time we held their feet to the fire and taken some of these "rascals" to court!

On what charges? They have broken no laws.
They have paid for their legal cover to protect them from us.

[chunkyfrog]

HARM can be defined as a tort, damage.
Even when not outright intentional, it can most certainly be considered for civil redress.
Lawsuits can be brought when no law was broken--and may be used to write new laws.

[Okie bipap]

Um, I am a severe night owl. I sleep past noon most days, and I would like to see my data in full nights, not parts of 2 different nights.

Set the internal clock in your machine back by two hours. That way, it will not change to the new day until 2:00 pm. When we went to day light savings time, I did not bother to change our machines. I don't really look at the time. I am more interested in the AHI and total hours slept. If I see anything that is time related that interests me, I simply add one hour to the time and I know what time it happened.

[zoocrewphoto]

Um, I am a severe night owl. I sleep past noon most days, and I would like to see my data in full nights, not parts of 2 different nights.

Set the internal clock in your machine back by two hours. That way, it will not change to the new day until 2:00 pm. When we went to day light savings time, I did not bother to change our machines. I don't really look at the time. I am more interested in the AHI and total hours slept. If I see anything that is time related that interests me, I simply add one hour to the time and I know what time it happened.

You chopped off the part of the quote that said this:

"my DME was shocked that I had gone in and changed the TIME on my machine." As in, I already did this. Years ago.

I set the clock on the machine so that it experiences noon at 3 or 4pm, depending on the time of year. I don't know if the guy was more shocked that I was looking at my data, or that I had found the clinician menu and changed the time. My point was that he was bothered by it, and it didn't affect my actual treatment at all, just my ability to view the data.

[chunkyfrog]

Mine is set to "noon" an hour or two later than "official" time.
Nice when "frog parties" keep me up very, very late.
It's a thankless job--but who else will do it?
The original night music, free of charge.

[palerider]

If using sleepyhead, under file/preferences/import, you can set the 'day split time', to something other than noon.

[Muse-Inc]

...changed the TIME on my machine.

Um, I am a severe night owl. I sleep past noon most days, and I would like to see my data in full nights, not parts of 2 different nights.

Me too! Running local 2AM to 2AM now to accommodate my screwed up sleep cycle, mostly works to ge into single session. Had to skip several days (date) to figure it out.

[Wulfman...]

I received a call today from my Neurologist's office and man were they upset. They noted that my machine was outside of the prescription of 5cmH20 - 20cmH20, and you'd have thought it was the end of civilization as we know it. I changed it two weeks ago to a minimum of 7cmH20 because 5 just wasn't enough airflow. I was almost choking on what little air that 5 provided. The nurse told me "ooooh, you can't do that", to which I replied, "well, it was either I change it myself or not use it at all, because I'm not going to choke all night long". She eventually said that she would ask the doctor to rewrite the prescription for a higher minimum, but she wasn't sure if he would do that before seeing me. I told her that he would either do it, or I would fire him and find a new doctor. To be fair, it was said more tactful than that, but the point remained.

I know it's not that big of a deal (it's TWO cmH20 for crying out loud, she acted like the sky was falling), and this is MY therapy we're talking about here, but I'm still well within the payment period as I've only had the machine for about seven weeks. Can these fools actually do something to have my machine taken away? Has a doctor ever canceled a prescription because they were miffed at a person being actively involved in their own health? I'm sure I could find another doctor that is ok with that, I just don't want to have to go through the trouble.

The first and foremost thing you need to remember (and remind them if they start to think/act otherwise) is......THEY WORK FOR YOU!!! It's you and your insurance that are paying for their services. And, don't be shy about reminding them if you feel the need to.
Back in 2011 as I was switching doctors, my new one put out his hand to shake mine and said...."I work for you."
I can't tell you how good that made me feel.

Hang in there and keep on taking control of YOUR own therapy. Nobody will care as much about it as YOU will.


Den

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