One Big Victory but the dr's PA is PO'd.

[SnoozyWoozyCat]

Last night I posted that my doctor wanted to put me on CPAP but I needed another study to determine levels and when I asked about an Auto Pap I was met with much resistance by the PA. Well, this afternoon the doctor's PA called me back and said that the DME provider would be calling me re: delivery of a RES MED VPAP Auto. The PA asked if I was still using my CPAP which concerned me because I haven't even started treatment yet and I reminded her that she had told me yesterday the doctor wanted me to go in for another night's study using CPAP before I could get a machine. She indicated that this would not be necessary -- I should use the RES MED for a month and then bring my data card in to be read by the doctor. Hooray, no additional sleep study and an auto pap -- I feel very fortunate!

Cue Ominous Music: But then I asked one question too many -- does the machine come with software so in between doctor visits, I could track my results at home. She couldn't have been more horrified. She indicated that no machines allow the patient to track progress and that patients should never adjust levels on their own, etc... "You wouldn't even know what to do with the information the smartcard stores". I replied that I had been doing research and found that there were many very well informed Xpap users who did indeed have software that they used to track their progress. I never indicated I was going to change my levels or go against my doctor's advice. She asked me where I was getting my information and I told her there was an excellent online forum. She got mad and said if you want to take the words of strangers online rather than a medically trained doctor, then perhaps we can't help you. I told her I am not trying to be difficult, just want to be involved in managing my own health. She said that I can always bring the card in and they will be glad to print out a report for me and on a quarterly basis, I can meet with the doctor to discuss results. I then asked if I would be receiving any further information re: my sleep study; if a doctor would be calling me to discuss in more detail and she said I should use the machine for a month, and make an appt. to see the doctor at the end of that month to discuss treatment. All I could get out of her is that I have moderate sleep apnea, with severe episodes when I enter REM stage. I've only met the doctor once and I really liked her; I don't know if the attitude is coming from the PA or if I have angered the doctor. Because it takes so long to get in to see specialists, I don't want to start over so I guess for now I'll use the machine and see the doctor in a month. But if I have problems between now and then, who do I call? the DME provider? I haven't had the opportunity to ask if there is a humidifier included, what type of mask she is recommending, what pressures, etc... Wow, this has been an experience. Didn't realize it was going to be such a fight.

[roster]

........ She said that I can always bring the card in and they will be glad to print out a report for me and on a quarterly basis, I can meet with the doctor to discuss results. .......

So if your settings are wrong, she expects you to use them for three months of suffering? Lots of buttheads in the profession.

Probably lots of buttheads in all professions. I had experience this week with three: a lawyer, a CPA, and a school administrator.

Are we a race of buttheads? I guess so.

[SnoozyWoozyCat]

At this point I'm hoping it's the PA who is the butthead. I really liked the doctor -- she seemed open to questions but now seems to be totally unavailable for questions. But I agree, sometimes it feels like the world is just made up of buttheads and morons!

[Cygnusia]

God forbid that we take charge of our own health instead of hanging on every word of the "medical professionals"!

I still haven't picked up the card reader or software myself, but only because the budget doesn't allow me to yet... but when it does, I'm there!

[skuddle]

At this point I'm hoping it's the PA who is the butthead. I really liked the doctor -- she seemed open to questions but seems to be totally unavailable for questions. But I agree, sometimes it feels like the world is just made up of buttheads and morons!

When the insurance companies pay a doctor $10 for a quickie patient visit and the patient uses more than 5 minutes of the doctor's time, that doctor is not likely to be around to answer questions.

Do I like this?

Also, in my book a PA is good for checking BP and pulse, and for writing down your meds list, asking the old "On a scale of 1 to 10 how badly doe is hurt" question, and the reason for your visit. Other than that I have no use for them.

[Cygnusia]

I actually prefer to see my PA. She actually listens to me and my concerns (and was the one that set me up for a sleep study in the first place) unlike my doctor, who only seems to be interested in pimping out the latest designer drugs to his lab rats... er... patients.

Plus, she's nice, fun, and makes me feel at ease whenever I have to go for a checkup or follow up.

[DottyG]

I'm reminded of the old joke:

"A man who had died suddenly in his sleep awakened to find himself in heaven. Being disoriented but curious, he began to walk around taking in the wondrous sights. he marveled at the pearly gates, as well as the streets paved with gold. After a while he felt hungry and asked one of the other occupants where he might find something to eat and was directed to the cafeteria. When he arrived he found a line a mile long and took his place at the end.

The line was progressing very slowly when a limo pulled up in front and discharged a man with a great beard and carrying two stone tablets who went in ahead of everyone else. The fellow became angry and tapped the person in front of him on the shoulder and asked who is that? The person in front of him replied that it was Moses the bringer of law. This satisfied the fellow for the present.

A short while later another limo pulled up and discharged a fellow wearing robes and carrying a staff who also went in ahead of the rest. The fellow again was irritated and asked the person in front of him who that arrival was, and was told that it was St. Jerome a patriarch and very important! This also satisfied the fellow for a short time.

After a time a sports car pulled up in front and a man carrying a black bag went in ahead of the rest, which infuriated the poor fellow who asked in exasperation, just who the hell is that? This time the line answered in unison, 'Oh, that's God, but he thinks he is a doctor!'"

[xiola]

But then I asked one question too many -- does the machine come with software so in between doctor visits, I could track my results at home. She couldn't have been more horrified. She indicated that no machines allow the patient to track progress and that patients should never adjust levels on their own, etc... "You wouldn't even know what to do with the information the smartcard stores".

im dealing with this exact same problem right now. I told the person at the DME company yesterday that I was an adult of above-average intelligence, and I was fairly certain I could figure out how to read the data. he didn't think that was funny

but yeah. they haven't returned any of my calls yet, so i feel your pain.

[GumbyCT]

Wow, this has been an experience. Didn't realize it was going to be such a fight.

I can only echo the words of Bruce Willis "Welcome to the Party, Pal"

It is just too bad this whole sleep industry is full of arrogance. Their mood swings make me believe they also have sleep issues. ya think?

When she snaps at you again - ask if she's not sleeping well? Let us know how she answers.

[SnoozyWoozyCat]

When she snaps at you again - ask if she's not sleeping well? Let us know how she answers.

I like how you think Gumby! Next time I talk to her, I'm gonna let her have it! Of course I'll wait until I actually have the machine and mask first -- I have a feeling if I rile her up too much, she can giveth and also taketh away!

Thanks for the laugh -- really needed it.

[JZ]

Also, in my book a PA is good for checking BP and pulse, and for writing down your meds list, asking the old "On a scale of 1 to 10 how badly doe is hurt" question, and the reason for your visit. Other than that I have no use for them.

I never saw the sleep doctor who interpreted my sleep study and the DME affiliated with that doc gave me the usual bottom of the line machine. My therapy was not going well, then I found this forum. I asked my primary care physician to refer me to a different sleep doc. He was booked up three months ahead, but I could get in quickly to see his PA. On my first visit after I explained my problems, I asked her to prescribe a data capable machine. She did not even blink before writing out that script. Over the next few months, I found her to be extremely competent and helpful. On each visit, she printed out a report from my smart card, went over it with me and answered any questions I had. Oh, and she spotted the fact that the original sleep doc had misinterpreted my sleep study. She re-interpreted it and gave me a new sleep study interpretation that more accurately described my sleep apnea. I'm sure there are some crummy PAs, but there are also some great ones.

[Scarlet834]

I was underwhelmed with the non-communication process that landed me with a CPAP machine, but at least I ended up with a data-capable machine (I think because Cflex was specified when I had difficulty tolerating the masks during titration), and the DME was very responsive when I had trouble with Mask #1. And mind you, I was in such bad shape I was begging people to expedite the process.

I had two scary days a week ago where my symptoms returned (not sure why, even looking at the data) and during which I spoke with my favorite RT. So I'm over the hump of, I've been downloading data ("they" aren't supposed to sell us card readers, did you know that?), and that I had increased my own pressure from 9 to 9.5, with a corresponding nosedive in AHI, mind you. Net, net, he acknowledged that I seem to have done all the right things, gave me some more ideas to try, and I have an appointment with the man next week to go over all of the data and what it means. The intent is to confirm I have the optimal equipment, and particularly to look at the leak profile. Mine is choppier than you on the forum would care for, but I've got to tell you, based on my functionality during the day I'm doing pretty well except for those two days. Anyway, now when I go to my primary care physician in November I can say that the current settings are known to the RT I'm working with. And by the way, I respect this RT (and usually my PCP) very much. My setup RT said it didn't matter if you exhale through your mouth. 'Nough said about that. So far I have no Sleep Doctor.

If the therapy isn't working, going off to try it or two months between Dr. appointments is not an option for those of us in the real world. I was marginally better but truly non-functional for commute and work purposes when I tweaked my settings. I was not debriefed about my sleep study before I was called back for titration, or before there was an appointment to deliver equipment. I was expected to pick which mask I wanted to try without opening the package (you'd think they could at least take measurements such as are on the website--no wonder Mask #1 hurt). Even the average leak and average AHI settings were not enabled on my machine. When I was trying to figure out if I had mask and mouth leaks for significant periods there was nothing to go from--no wonder I bought software. It was clear that if something hurt I could call for help, but how long would I have needed to cope with settings that weren't effective for me at home before it could be considered something other than adaptation--two months?

If more time were taken up front to explain what might happen during the process, how long to try a setup before questioning it, who to call, etc. I think more people might be able to get by without their own software, although certainly a display of actual leak and AHI would be much more helpful than a 7-day average. If you feel great, maybe a quarterly review of the date would be fine. But if you have a bad night, or worse, several bad nights, it's got to be possible to bring that card down and print the data now. Since our medical arrangements cannot be that way right now (not necessarily the fault of our doctors) I see home software as the only option.

Under ideal circumstances we would be able to call our care providers and collaborate on making changes, not be renegades. I'm looking forward to my appointment, and when I go back to my PCP I plan to get a referral to a sleep specialist to have in my back pocket also.

SnoozyWoozyCat, good luck on your journey too! Thank you for giving me the opportunity to vent.

[goose]

My doc was great!! Unfortunately she retired to add to and continue to raise her family -- she's back working again, but much further away and out of network -- it's ok, we still talk.....
In our first follow-up appt. I showed up with a pile of reports to pour over which pleased her greatly. She was a bit surprised when I told her that I had the software to read the card and do whatever I needed to do -- she didn't even have the software but relied on the DME's to forward reports from card readings. Our 15 minute scheduled appt., turned out to be over 45 min......She supported my changes, and monitoring in every way.
Once I got the DME trained that I was in charge of my treatment and not them, it's been fine. I'm sure they weren't happy about not getting that $100 every time I needed the pressure on my machine changed, but I really don't care about their income -- only my treatment!!!!
I'm wondering if I should go ahead and see the doc she recommended to take over her apnea patients and see about another PSG just for S's and G's.......I'll take my own mask this time though!!!

Just like anything else in life, there are good'ns and bad'ns out there.....Most patients are intimidated by the "God syndrome", so don't get the treatment they need or deserve. Just have to hike up the huevos and stand up for yourself!!!

I think I'd over educate myself (like I have done), then bury the PA with information overload.....ask the "tough questions" to see if he/she even has a clue.....I always make it a game, and I don't hesitate to laugh at BS and call it what it is when I hear it (and there are a lot of 'em that are full of it, and try to get rid of it at your expense!!!)

Have fun
cheers
goose