Interesting DME situation

[raylo]

My eighty-something year old Dad was just diagnosed with sleep apnea. He had a two night study and I was surprised to find that he went home from his titration with a machine - that same morning- on Wednesday of last week. Now, he got a great machine, a Resmed S9 Autoset, but he is having some trouble with his mask, adjusting the machine, and maybe therapy in general. (I want to give him more info than he can take in - he just wants to sleep).

So, yesterday he goes back to the DME that gave him the machine, after waiting most of the day for a return phone call they start asking him about how the machine is set up: "Is EPR on?" "What is pressure set at?" "What mode - CPAP or Auto?"

His answer to all of those questions is "How should I know, you gave me the machine and didn't tell me anything about it, or what the settings are. You bascially gave me the machine and showed me how to turn it on." They didn't even show him how to look at the screen or how to use any of the knobs/buttons.

The guy starts fiddling with machine and my Dad says "It would be a good idea to know what the prescription calls for. I want a copy of my prescription." Tech says "No problem."

A little while later the guy tells him "Um...we can't give you a copy of your prescriptiom...because we can't find it." My dad told me it was obvious that the DME knows it screwed up, that they can't find the prescription because they don't have it. No one can say they set the machine at the pressure because that is what the doctor ordered. They don't seem to know what the doctor ordered.

My dad told them he wants a copy of the prescription this morning, period. He's looking up the appropriate numbers in the state government to be able to threaten reporting them for selling a machine without a prescription. He is over eighty and has sleep apnea - he can be a bit cranky right now.

It might be interesting to see if the level of service changes since they know they are busted.

I do have a couple of questions, does anyone know what the default seetings are on an S9 Autoset? He is on straight CPAP at 18 pressure, and none of the comfort features were turned on except ramp.

Until a prescription and/or a copy of his sleep study results surface, should the machine be set to Auto mode?

The doctor and the DME are in the same building and quite chummy, I'm wondering what the relationship is, and if the doctor could get in trouble if he has some ownership in the DME (like my doctor and DME in another state, thousands of miles away).

[Lizistired]

I would go to the dr or sleep center that did the study and request copies of the full study reports with condensed graphs for both the diagnostic and titration and the prescription.
That's the only way you will know for sure.
It sounds like your Dad is on the ball enough to make use of it.
You will also need it if you want to shop for a new DME.

[Sheriff Buford]

I am a little confused at your note. The first part tells me he is unaware of his setting and the last part of your note says the setting is 18. My thoughts are to forget the prescription (thang...) and call the doctor and ask him what the setting should be.

If he pushed the "I" button and the down button at the same time for 3 seconds, an additional "face on the pillow" icon will pop up. Turn the knob to the "new face" and push down on the knob. The screen will give him the settings, AHI (for the previous nite), AI and CI readings, leak rate, hours used and 95 percentile reading.

I started out on straight cpap settings on my S8. I wanted the S9 because I wanted the data and I wanted the autoset therapy. The auto-set is good for me because I can set the low reading at a comfortable level, and the machine will kick-in when an apnea incident occurs. After the incident is "taken care of", the machine will back-down to the lower setting until a new incident occurs. I am really happy with the cpap therapy because my AHI average is a .4, my AI incidences average a .3 and my CI's are averaging a .3. Some folks would kill for these results. My orginal test showed I had 40 AI incidents in one hour.

I would suggest he uses the autoset, find out what his setting needs to be, educate himself and start monitoring his settings (to find his "sweet-spot").

Hope this helps.... Sheriff

[Wulfman...]

My eighty-something year old Dad was just diagnosed with sleep apnea. He had a two night study and I was surprised to find that he went home from his titration with a machine - that same morning- on Wednesday of last week. Now, he got a great machine, a Resmed S9 Autoset, but he is having some trouble with his mask, adjusting the machine, and maybe therapy in general. (I want to give him more info than he can take in - he just wants to sleep).

So, yesterday he goes back to the DME that gave him the machine, after waiting most of the day for a return phone call they start asking him about how the machine is set up: "Is EPR on?" "What is pressure set at?" "What mode - CPAP or Auto?"

His answer to all of those questions is "How should I know, you gave me the machine and didn't tell me anything about it, or what the settings are. You bascially gave me the machine and showed me how to turn it on." They didn't even show him how to look at the screen or how to use any of the knobs/buttons.

The guy starts fiddling with machine and my Dad says "It would be a good idea to know what the prescription calls for. I want a copy of my prescription." Tech says "No problem."

A little while later the guy tells him "Um...we can't give you a copy of your prescriptiom...because we can't find it." My dad told me it was obvious that the DME knows it screwed up, that they can't find the prescription because they don't have it. No one can say they set the machine at the pressure because that is what the doctor ordered. They don't seem to know what the doctor ordered.

My dad told them he wants a copy of the prescription this morning, period. He's looking up the appropriate numbers in the state government to be able to threaten reporting them for selling a machine without a prescription. He is over eighty and has sleep apnea - he can be a bit cranky right now.

It might be interesting to see if the level of service changes since they know they are busted.

I do have a couple of questions, does anyone know what the default seetings are on an S9 Autoset? He is on straight CPAP at 18 pressure, and none of the comfort features were turned on except ramp.

Until a prescription and/or a copy of his sleep study results surface, should the machine be set to Auto mode?

The doctor and the DME are in the same building and quite chummy, I'm wondering what the relationship is, and if the doctor could get in trouble if he has some ownership in the DME (like my doctor and DME in another state, thousands of miles away).

That IS "interesting".......and a little scary.

"Default" pressure settings for APAPs are typically 4 - 20. I have no idea on the EPR or any of the other stuff.

I'm a little confused........where did the "He is on straight CPAP at 18 pressure" come from?

If he's never used a CPAP machine before, 18 cm. may be just a tad much to get used to at first. I would recommend starting at 10 cm. for a week or so and gradually increase it until the prescribed pressure is reached (UNLESS good therapy results/numbers are reached before then).
An EPR setting of 2 or 3 may help him get started.


Den

[raylo]

Sorry for any lack of clarity. The machine was set on CPAP mode with a pressure of 18. Over the phone, I walked my father through finding out that much (the S9 is very different than my old s8 elite and my intellipap). However, no one at the sleep center/DME/ doctor's office has told him what the pressure was set at. My dad didn't know the pressure setting until we got together via phone.

So far, no one can say what the doctor prescribed or even if he has written the prescription. I am a bit suspicious because he received the machine before he left the sleep center after his titration, within an hour after waking up that morning.

Until we know his prescription, I was thinking that running it as an auto - almost like a home titration - might be best, but Den your suggestion might be good for someone adjusting to xpap. Hopefully, he will get some useful info from the doctor's office today. I've told him to demand sleep study results as well as the prescription.

I wish I was there. I've sent him the clinical manual (they don't know that), but right now, he doesn't have a lot of patience for delving into the settings and adjusting the machine. So far, he hasn't done the homework I've assigned to him, like reading cpaptalk wikis, etc. I may have also overloaded him with info.

Wouldn't it be nice if someone offered real, one-on-one couseling for new patients about how to make xpap work best? I don't know how I would have done without this site.

Thanks everyone.

[rested gal]

I do have a couple of questions, does anyone know what the default seetings are on an S9 Autoset?

As Den said...a range of 4 - 20 is the way any autopap comes from the manufacturer... set for minimum pressure 4, maximum pressure 20. That's not the best range to actually "use", though, imho. Unless a person is having a ton of leak problems that would drive pressure up unnecessarily, it's ok for the max to be set at 20. But the minimum pressure is the really important pressure, imho, and the minimum should be set high enough to try to prevent most apneas.

He is on straight CPAP at 18 pressure

Even though the DME can't find the Rx now and can't remember what it said, surely that was the prescribed pressure on the Rx they received from the doctor in the first place... CPAP @ 18 cmH2O. Surely! I can't imagine a DME setting up a machine for such a high single pressure unless they saw that on an Rx for your dad.

Until a prescription and/or a copy of his sleep study results surface, should the machine be set to Auto mode?

Well, that's up to your father (and you) and his doctor (if your father wants to ask the doctor.) Den's suggestion of using straight 10 for awhile is fine.

If it were me, and I thought the prescription really was for a pressure of 18 (which is what I'd assume until the Rx surfaces) I'd set the machine whichever of these two ways I wanted to use it:

CPAP mode
pressure 18
EPR on fulltime at EPR "3"

or

Autoset mode
min pressure 13
max pressure 18
EPR on fulltime at EPR "3"

I wouldn't use Ramp myself, but if I were going to use Ramp, I'd set the Ramp Start pressure at whatever felt ok ... probably 6 or more. And I'd set a fairly short ramp time, like 10 or 15 minutes.

On another note... if I were the DME and the patient had asked about the Rx, and I was not able to find the Rx I'd be on the phone to the doctor's office within MINUTES ... to find out for sure, WHAT pressure he had been prescribed. And to get a copy of the Rx faxed that day.

[GumbyCT]

If he's never used a CPAP machine before, 18 cm. may be just a tad much to get used to at first. I would recommend starting at 10 cm. for a week or so and gradually increase it until the prescribed pressure is reached (UNLESS good therapy results/numbers are reached before then).
An EPR setting of 2 or 3 may help him get started.


Den

Good advice....start lower whether auto or straight cpap. Let him get used to sleeping with something on his face and working out the leaks before cranking it up to 18. After he gets used to wearing it AND can sleep thru the nite then bump it up by 1 or 2 cms each week. Kinda like the ol' bull and the young bull Slow and easy.

I went thru this with my dad, he wasn't even interested in how to turn it off, so I set it to Auto-OFF.

Don't overload him with info or homework. If he's like my dad, he figures he lived this long without the machine, so what's the BFD? lmao Can't blame him either.

And if you think about it, it is easier to not use it than to learn something new at that age. But I do commend him for going after the prescription, certainly someone has it.

Good Luck - just take it slow & easy with him.

[archangle]

I don't know your dad, but here's some general "old dad" advice that worked well for me.

Don't encourage his anger at bad service to the point that he quits.

Be willing to explain things, but sometimes it's best to just tell him "push this button, turn that knob," etc. and then explain later.

[raylo]

Yes indeed, Archangel , the important thing is that my dad not give up. I also reminded him that, at least, he got a great machine without having to fight that battle. He seems committed to giving cpap a chance.

He just let me know he had a better night last night, apparently they turned on the EPR. That got him through most of the night with the mask on for the first time. I chatted with him about fitting the mask at full pressure - which has never been done. He had adjusted the mask either with no pressure or during the ramp period. It was giving him fits when the machine reached full pressure.

While I was writing this my dad called. The DME produced a prescription for the setting he has. There is still a something fishy about it according to him. He doesn't believe the doctor (or the nurse who is also listed on the prescription pad) was in the building before he got his machine, but he is restrained in his temper toward them. I am pretty annoyed - apparently, they didn't tell him much of anything about the machine or even give him the patient guide for the machine.

We also chatted about how he wanted to proceed with the therapy in the short term (dotor appointment in 6 weeks). I explained the options that were posted here. He decided that he would keep trying with the prescribed pressure for a while and see how it went, before veering off into some of things that people do here (including me, I love the Labrat threads). I think this is wise for someone who doesn't yet know a whole lot about cpap and doesn't have a copy of his sleep study results yet.

I tried telling him push this button, turn that knob. He has very little patience for his son telling him which button to push. He loves to read up on stuff so I am trying to direct him to resources that don't sound like his bratty kid.

[msradar65]

I would definitely recommend getting the clinician guide and software from Uncle_Bob. If he is anything like my father he wants the manual and he will figure it out on his own. I am the same way.

[Guest]

Sorry to here that you are getting such a run a round. I don't really have any information that I can add to the discussion. Though if it were me, I might think about finding myself a new doctor, and a new equipment place. I usually believe that you get your best treatment, only if you feel that you are being listened to and your answers are being answered as best as possible.
I happen to have a good doctor and I had a good respitory therapist who came and set me up. Unfortunetly she didn't say with the company, and the new person was impossible to get a hold of. So I decided to switch companies, not because they were not very nice, but there scheduale to go into there place to get fit was on Wednesdays when I worked, and was kinda far. They would return my phone calls but some times take 2 - 3 days, and then I would miss them, and I grew tired of playing phone tag.
So I got my new company I go through and they are great. They always have someone who I can talk to, and if they don't, they have 2 other locations with someone on staff that they can have me call so I get my answers fast. They even have an automatic phone call that calls and asks me if I need new supplies every 3 months.
So maybe you give your doc some time as it may just have been a mistake, it happens, but if it doesn't improve I would suggest maybe going with someone else.
Good Luck

[FTX42]

I have the RESMED S9 Autoset. It is the best CPAP/APAP machine that I have used.
It must be very frustrating for your father trying a CPAP machine for the first time and not getting support from the DME.
Perhaps the best approach is to ask his doctor to call the DME and insure that the script is being fully complied with.
If the doctor does not help, change doctors and DME. Note a good DME can be very helpful to the doctor and patient.
A pressure of "18" is very high, most machines top out at 20 cm; need to see the sleep study and script..............
In the interim consider setting the S9 to "auto" (rather than "CPAP"). The machine will then continuously apply the optimum pressure.
This eliminates the guess work on what the pressure should be.
Also setting the "minimum" pressure to a level that is comfortable helps, especially when first putting on the mask.
I set mine three cm below my average pressure with the "ramp" turned off.
The EPR helps breathing by reducing the exhalation pressure by 1 to 3 cm. I set mine on 3, full time.

[raylo]

Okay, this got interesting again. First my dad finally looked at his machine thoroughly and realized it was an escape and not an Autoset as he had told me. My dad says that whenever his machine got to his prescribed pressure of 18, he woke up very uncomfortable - having trouble exhaling. He made an appointment to see the doctor this week instead waiting until six weeks out as scheduled.

He saw the doctor who is in the same building as DME and seems to have some relationship with them (possibly a financial interest). The doctor heard my dad talk about his discomfort and changed the prescribed pressure from 18 to 12, which seems a pretty big change. The doc "went over" the sleep study and titration results. According to my father, the doctor said "we take patients up to the highest setting they can tolerate" and set them there. Please correct me if I'm wrong, but this would not seem to me to be a standard protocol. Unfortunately, my dad didn't get a copy of the results, as I had suggested.

The doctor seemed surprised when my dad said he wasn't happy with the machine he got, and seemed interested learn about the new Resmed S9 Auotset (my dad seemed to think the doc was talking like he did not know of such a machine). Dad showed the doc brochures of the S9 line that he had printed out from the Resmed web site.

After my dad suggested that changing pressures might suggest the need for APAP and a data capable machine, The doc said he would ask the DME people if they could order such a thing. Apparently a bunch of people huddled up (out hearing range from my father). After 5-10 minutes one of them came back and said that they thought they could order an Autoset. A technician later told my dad he was really lucky because the DME got paid the same for each machine and that the Autoset cost three times as much as the Escape (hmmm... the price difference on cpap.com is 12.5%). My father kindly offered to help them pay the cost differential if they would show him their invoices indicating exactly what they paid for each machine. They declined his offer.

I think they probably decided that it would be in their best interests to not provoke him too much more..
He slept through the night with the mask on with pressure @ 12.

I do have another question: My father has heart and lung issues (beryllium disease). His biggest complaint is that is hard to exhale at higher pressures. Should he and a doctor discuss bipap?

[GumbyCT]

My father has heart and lung issues (beryllium disease). His biggest complaint is that is hard to exhale at higher pressures. Should he and a doctor discuss bipap?

Certainly. That is like asking should breathing be an option?

[raylo]

My father has heart and lung issues (beryllium disease). His biggest complaint is that is hard to exhale at higher pressures. Should he and a doctor discuss bipap?

Certainly. That is like asking should breathing be an option?

I asked my Dad if he told the doctor about the beryllium. He said that he did tell him. Considering that combined with complaints about the exhalation, I was surprised that bipap wasn't suggested by the doctor. He wouldn't be getting an autoset or even have EPR turned on unless he had pretty much demanded they do something. I think a change of doctors should be considered.