To all the veteran PAP users out there...

[lyankowy]

What kind of information would you have appreciated when you first started PAP therapy? For example, cleaning instructions, machine details, mask details, etc...

Thanks!

[Stormynights]

I was able to get all the information I needed here. I can't think of anything I was missing.

[lyankowy]

Let's say you were at the dr office and they were to hand you a folder filled with useful PAP info...what type of info would you have like to see in there?

[Lazer1234]

Let's say you were at the dr office and they were to hand you a folder filled with useful PAP info...what type of info would you have like to see in there?

It is quite sufficient if it states on the first page http://www.cpaptalk.com

[Stormynights]

Let's say you were at the dr office and they were to hand you a folder filled with useful PAP info...what type of info would you have like to see in there?

Information on types of machines and their advantages and disadvantages. And software to check your own data.

[Julie]

Why do you ask? Are you a manufacturer or doctor's office or DME?

Getting some free research done?

[Sir NoddinOff]

Let's say you were at the dr office and they were to hand you a folder filled with useful PAP info...what type of info would you have like to see in there?

It is quite sufficient if it states on the first page http://www.cpaptalk.com

On my last visit to my sleep doctor in July, he handed me a sheet of helpful tips on managing sleep hygiene and useful resources. At the top of the internet list was CPAPtalk.com. I almost asked him how he felt about some of the members constantly ragging on the sleep profession and doctors etc ... anyway, I chickened out. I don't think he got that far into the forum, truth be told

[BlackSpinner]

Anything would be an improvement over what I got.

How about a simple step by step instruction sheet on how to set the machine up once you get home
simple step by step instructions on how to fit and adjust your mask
A list of issues you could have with the mask, the machine and the humidifier
The software to read your efficacy data with a manual on how to interpret it


And of course a link to here

[Goofproof]

Let's say you were at the dr office and they were to hand you a folder filled with useful PAP info...what type of info would you have like to see in there?

My folder was like most, empty, but I can read and operate machines. All I needed to start was the manuals that came with it. Later I required proof on the best treatment I could get, thanks to this web site I found the software and where to obtain the card reader, and help in sorting out the meanings and terms.

I started out with FF mask, as everyone should, that was you recieve treatment even if you mouthbreath, which I did, but for PROFIT most are put on a nasal mask, more profit for the provider with no downside if you get poor results due to mouthleaks. one you won't know about it, or they will get to sell you a FF Mask, more money for them. Win, Win for the DME, the patient doesn't matter, just his billfold. Jim

[kwikwater]

I'm with BlackSpinner. ANYTHING would have helped. I wasn't told that someone would knock on my door, unannounced, with a CPAP. I had no idea that I might have shopped for a DME, let alone what machine or mask. That same DME didn't put me on any followup list, so when the gel in my nasal mask started hardening, 18 months later, I didn't know anything about regular parts replacements. Of course I got no followup phone calls about troubles or compliance, from the Doctor or the DME, until my Dr. appt a month later.

There's a "need to know" to make it through the first few nights, which I place on the DME. Do they adjust the mask with the patient laying down? Do they leave the mask on long enough to know if ramp is good, bad or not needed? Have they helped the patient know how to adjust the mask when it does start leaking?

After the patient is over the break in period and out of the cloud of all the new terminology, THEN point them right here to cpaptalk!!

[robysue]

What would have helped me:

1) Not being told, "You don't need a full efficacy data machine because you will feel better in two weeks," when I politely asked for a prescription for a full efficacy data machine. When I started PAP therapy, I was functioning pretty decently in the daytime and my Epworth Sleepiness score was less than 5. Two weeks later I was a walking zombie in the daytime with a nasty baby insomnia monster in my bedtime causing lots of bedtime dread. My Epworth score two weeks into therapy had increased to between 15 and 20.

2) Being told exactly how the hypopneas on the sleep test were scored and what the difference between a "hypoponea with arousal" and a "hyponea" and an "obstructive apnea" actually were. Instead of actually telling me what really went on, the sleep doc over simplified everything and made the bald-faced statement, "You stop breathing 23 times an hour." In reality, my OAI was only 3.5ish, but my HI=19ish and all the hypopneas scored were "hypopneas with arousal." It took me months before I was really able to figure out what my diagnostic sleep study actually said about my sleep. And there are a couple of sleep techs who post here who were critically important in helping me understand the data from my own sleep tests.

3) Having the doc or the PA look down my upper airway and actually tell me what they saw: The overlarge tongue, the long upper palate, the Mallampati score of 3 or 4, all of which help provide an answer to "Why do I have OSA given that I'm normal weight and have a small neck?" But every time I ask, "Why do I have OSA?" the answer was "I don't know." However, roughly nine months later, when the sleep doc ordered the PA to fire me as a patient (for not getting better fast enough and taking up too much time during my appointments), the second PA who was brought in to do the actual firing finally did look down my airway and even took pictures with his iPhone. If the sleep doc had bothered to tell me this stuff on the first visit, it would have saved me a great deal of angst and worry and confusion. All of which added tremendously to my difficult adjustment to CPAP.

4) Not having harassing phone calls from the doc's office every day insisting that I needed to let them forward my prescription to the DME "next door" to their office---a DME that would have set me up with a brick. I had refused to allow the sleep doc's office to simply forward my prescription to that DME in the first place because I wanted to check with my insurance company about my coverage and I wanted to shop around for a DME. It took me about 3-4 weeks to locate the DME that I do business with and during the first two weeks I was getting a call from the sleep doc's office almost every single day. I kid you not---I felt as though they were harassing me. The calls finally stopped when I had my husband call them and tell them that the calls were harassment and that I was shopping for a DME and that I would let them know when I had located a DME that I wanted to do business with.

5) A face-to-face patient support group. At the time of my diagnosis and for the first 6 months of PAPing, I was desperate to talk face to face with other PAPers who had dealt with severe adjustment problems. I felt utterly alone and the multiple trips to the sleep doc's office to talk with the PA about what to try next did NOT help at all. The PA is not a PAPer and she really had no idea of what I was facing each and every night in my own bedroom during the three months of hell that were my first three months of PAPing.

[Janknitz]

Kaiser sleep clinic did give out some handouts that were helpful, I'm trying to remember what was on them--one was a link to this forum. I think there was something about using a neti pot or saline nasal spray to clear out the nose, and a few other things. Since Kaiser plans have varying amounts of DME coverage, there were instructions to contact the DME department to find out what coverage I had and learn how much my co-pay would be BEFORE the machine was ordered (which was helpful!).

I think when a CPAP is prescribed, patients should be given a handout that includes the following:
1. Instructions to contact his or her insurance company to understand exactly what DME coverage the person has (and a general handout for Medicare patients) and how it works (deductibles, co-pays, pay by HCPCS or not, etc).
2. A copy of the prescription and explanation of each item ordered.
3. A list of local DME's WITH instructions to check with insurance to make sure they are authorized providers for that insurance. Include information that Patients may choose ANY DME they wish and may request (if not already ordered) a data capable machine or APAP even if a fixed CPAP prescription is ordered (HA!), and that most insurers do NOT permit balance billing.
4. General instructions on how to fit nasal and full face masks, nasal pillows, and the difference between Gel cushions and air cushions. Include information about changing masks if the original one does not work, and provide at least the Medicare replacement schedule (since many insurers follow Medicare) with instructions to check with the individual's insurer.
5. General cleaning Instructions.
6. Referrals to this website and to Padacheek.com
7. A list of additional items that may be helpful including nose pads, CPAP wipes, chin straps, hose management systems, mask liners and strap padding.
8. A "troubleshooting guide" for things like aerophagia or increased GERD, dry mouth, claustrophobia, skin issues from the mask, nasal congestion, insomnia, dealing with the machine noise, etc.

[robysue]

As for information about PAP machines themselves:

1) Information on full efficacy data machines---both straight CPAP and APAP should be provided by the doc's office.

2) A written prescription should be provided. I had to nag the sleep doc's office for a copy of my prescription for several weeks. I think the DME finally provided me with a xerox copy of the prescription that had been faxed to them. Even today I don't have a formal copy of my current prescription---just a xerox. While that's technically not been a huge problem for me, I can forsee situations where a legitimate copy of the prescription rather than a Xerox may be needed. The most common of which is what happens if something goes wrong when you're traveling and you need to get something (like a whole mask or a loaner machine) that requires a prescription.

3) Information about how to obtain the software needed to download and analyze the data from the machine should be provided by the DME that supplies the equipment.


Things my DME did RIGHT include:

A) Setting me up with an S9 AutoSet (in CPAP mode) even though the prescription simply read "CPAP at 9 cm." Moreover, this particular DME made no issue about issuing me an APAP with full data; they set all their new patients up with full data APAPs.

B) The RT who set up my machine made sure that Sleep Quality was set to ON on my first Resmed S9 and taught me how to access the data on the LCD. Then she had me go through the process of doing myself with her around so that we both knew that I knew how to check the data on the LCD.

C) The "how to use the machine" instructions and the instructions for fitting the mask that I did get from my DME were excellent.

D) As part of the instructions on cleaning my equipment the RT had me disassemble and reassemble the mask in her presence so I knew I was doing it correctly.

[jwerley]

You can see when I finally found Cpaptalk.com and I have been paping since 2005. Back then I don' t think they even had data capable machines, if they did I didn't know about them. I was given a brick, but did not know it. Cpaptalk would have been invaluable to me!! I did have a half decent DME who would come to my home with any equipment I needed or any help I might need....but, he to liked to talk and he would do that endlessly, even tried to get me to join his church. I would dread his visits. . Then that DME was driven out of business by the "Big Boys" and I had to go with Lincare..... they have been good to me...no complaints!

I am now on my 4th doctor....not bad for 9 years....

Bottom line: ALL CPAP INFORMATION PACKETS FOR NEW PATIENTS SHOULD HAVE IN BOLD LETTERS: SEE CPAPTALK.COM IF YOU HAVE ANY QUESTIONS OR NEED ANY HELP ADJUSTING TO YOUR NEW WAY OF LIFE.

Janice

[StuUnderPressure]

What would have helped me:

1) Not being told, "You don't need a full efficacy data machine because you will feel better in two weeks,"

2) Being told exactly how the hypopneas on the sleep test were scored and what the difference between a "hypoponea with arousal" and a "hyponea" and an "obstructive apnea" actually were.

3) Having the doc or the PA look down my upper airway and actually tell me what they saw:

4) Not having harassing phone calls from the doc's office every day insisting that I needed to let them forward my prescription to the DME "next door" to their office---a DME that would have set me up with a brick.

5) A face-to-face patient support group.

Sixteen (16) years ago, I actually did receive both No 3) and No 5)

The actual Sleep Doctor (a Neurologist with a speciality in Sleep Medicine) did that initial evaluation himself & did look down my throat. He then also ordered numerous blood work which included a drug screen to determine that my problems were not from me taking some recreational drugs. I was first offended by that, but got over it quickly when I got the results & talked to the Sleep Doctor.

When he got the results, I met with him again to go over those results which were all good or even better. He assured me that everybody was tested for recreational drugs (that is when I quickly got over 1st being offended).

The Sleep Doctor's office was in the hospital where all of the Sleep Studies were done, so he was readily accessible for more face to face contact.

When I initially met with the Sleep Doctor, I was told that he would speak to me the morning after the Sleep Study. He was there to individually speak to the 3 of us who had Sleep Studies BEFORE we left at about 6:30 A.M.

I was scheduled for the Titration part the very next night.
I was again to meet with the Sleep Doctor the next morning before leaving.
But, when I awoke the next morning, I was told the Sleep Doctor had gone out of town, but was on the telephone & would individually speak to me & the same other 2 people to give us some preliminary results. He was at a professional conference thousands of miles away, but called before the conference began that morning.

I was given my "brick" that morning by the DME who brought all 3 machines & some masks to the hospital.

I was also given an appointment for 2 days later to meet with the Sleep Doctor where I got the detailed results. The Sleep Doctor himself gave me a copy of those results to follow along with as we went over them. I was able to keep that copy. I found out later that he had also sent copies of those results to every Doctor I had mentioned in the information I initially gave to them that I had ever seen in my lifetime. I found that out when a couple of them called me to inquire why they had been sent a copy of the results of my Sleep Study. I subsequently had the Sleep Doctor remove every other Doctor (except my Internist) from the list to receive further reports.

Fortunately, there was an AWAKE group in my city that met every month.
It was sponsored by the single DME that my Sleep Doctor sent everyone to (i.e. they provided the food & drink). The Sleep Doctor was the speaker at EVERY monthly meeting, even when there occasionally was another "guest" speaker who spoke on a specific subject.

Since the DME was also at every AWAKE meeting, they routinely checked your pressure (by manometer), if you brought your machine with you.
You could also buy some basic supplies from them there.


After each meeting, the Sleep Doctor was available for individual consultations if one needed that.

None of the activities at the AWAKE meetings cost anybody anything.

EDITED 1-3-14:
My 1st machine 16 years ago was NOT a "brick", it was LESS than a brick. It was a ResMed Sullivan V & did NOT even record hours of usage and did NOT even have a Humidifier.
My 2nd machine 5 years later (less 2 days) WAS a "brick", a Respironics Rem Star Pro.