Am I asking too much? (long post)

[Phil_in_CA]

Hello all,

I am a newbie... Having said that, I have two friends and a family member with machines, so I know somewhat more than nothing about CPAP, but certainly not, in any real way, knowledgeable. I am in the process of getting a machine and wonder if I am being left in the dark on purpose or is just the way it goes in these situation? Nothing seems overtly wrong, but I am interested in your take on what has happened. Let me explain...

I recently went for a sleep study and I had a rough night, waking up numerous times; once, almost choking. In the morning, the technician told me, after some prompting, that I had stopped breathing (only for the time he was actually watching my data) over 80 times. He said that the total number of episodes was higher, and that I should plan to reschedule for a followup night. Ok... not good, but that's it?

Now, I thought that my doctor's office would call and schedule an appointment with me to discuss the results, but no... The sleep study people never called me to discuss the results, but finally they did finally call to reschedule a second night's stay.

No word about the results, no copy of the data, no letter, no nothing!

During the second night's study, the technician (different person) hooked me up and fitted (il-fitted, I might add) a CPAP machine to me. I had a bit of a trial falling asleep, but finally slept. I fell asleep about 9:30 pm, and awoke a couple of times; once because the oximeter on my forefinger hurt, and once because my arms got cold from the air leaks at the front of the mask, but finally, at 3:00 am, my eyes popped open and I could tell that I wasn't going to go back to sleep! I felt like a piece of toast popping out of the toaster, all done!

When the technician came in to release me from all the gear and electrodes, I asked if she thought I would end up needing a machine. She kind of laughed and told me that I was already a candidate for a machine and that the second night was to determine, first, if I could tolerate the machine, and secondly, the amount of air I needed to keep my airways open. This is news to me, since no one had called to talk to me about all this, or make an appointment to do the same... I was/am in the dark, really... except for my family member and friends who have machines who ARE talking to me, and the technicians at the lab!

As I was leaving, I asked what would happen now, and the lab tech said that I could expect that my cardiologist would receive the findings in about a week.

Once again, I heard nothing from the sleep study people or my doctor's office.

So, now the medical supply has called saying that they have a prescription for me and want to set an appointment to have a machine brought to my home to be fitted and set up... of course, I made the appointment, but holy smokes, when do I get to say something about all this?! The doctor prescribed a machine for me with no input from me?! I have no idea what the machine is like (quiet, highly rated, etc) and can find little information about it, other than sales blather. It is a Respironics model 260, but that means little to me.

Am I asking too much to have been included in the steps along the way, or is it typical for patients to be excluded? I am a bit miffed about it, but wonder if I am out of my element here and am expecting too much.

Thanks for reading my rant, and I appreciate any and all comments, suggestions, flames (I am putting on my flameproof long-johns, now!)

Phil_in_CA

[ChrisD]

Am I asking too much to have been included in the steps along the way, or is it typical for patients to be excluded? I am a bit miffed about it, but wonder if I am out of my element here and am expecting too much.

Hey Phil_in_CA

Nope, you are not asking too much, not at all. I would call my doc right away and schedule an appointment to go over both sleep studies and have the doc explain everything to you until you are satisfied. What happened during the study, how many times you stopped breathing, etc. Get paper copies of both studies and a paper copy of the prescription. It is your health they are dealing with.

You might want to cancel that appointment to get the machine until you know exactly what they are bringing you. They are famous for giving you the cheapest POS they can get away with. You want a machine that gives you access to you sleep data so you can see if it is helping.

I know this whole experience is confusing. We've all been through it. You've made a good start by coming here.

Good Luck,
Chris

[chunkyfrog]

Respironics 260 sounds like the dataless blower for you, RUN, don't walk, back to your doctor and
BEG him for a specific prescription for a machine that will give you efficacy data. (AHI, leak, and wave form.)
All machines have usage, or compliance data--this for the insurance company--not you.
Apnea patients with no feedback are no better off than diabetics without glucose meters.

[Todzo]

Hello all,

I am a newbie... Having said that, I have two friends and a family member with machines, so I know somewhat more than nothing about CPAP, but certainly not, in any real way, knowledgeable. I am in the process of getting a machine and wonder if I am being left in the dark on purpose or is just the way it goes in these situation? Nothing seems overtly wrong, but I am interested in your take on what has happened. Let me explain...

I recently went for a sleep study and I had a rough night, waking up numerous times; once, almost choking. In the morning, the technician told me, after some prompting, that I had stopped breathing (only for the time he was actually watching my data) over 80 times. He said that the total number of episodes was higher, and that I should plan to reschedule for a followup night. Ok... not good, but that's it?

Now, I thought that my doctor's office would call and schedule an appointment with me to discuss the results, but no... The sleep study people never called me to discuss the results, but finally they did finally call to reschedule a second night's stay.

No word about the results, no copy of the data, no letter, no nothing!

During the second night's study, the technician (different person) hooked me up and fitted (il-fitted, I might add) a CPAP machine to me. I had a bit of a trial falling asleep, but finally slept. I fell asleep about 9:30 pm, and awoke a couple of times; once because the oximeter on my forefinger hurt, and once because my arms got cold from the air leaks at the front of the mask, but finally, at 3:00 am, my eyes popped open and I could tell that I wasn't going to go back to sleep! I felt like a piece of toast popping out of the toaster, all done!

When the technician came in to release me from all the gear and electrodes, I asked if she thought I would end up needing a machine. She kind of laughed and told me that I was already a candidate for a machine and that the second night was to determine, first, if I could tolerate the machine, and secondly, the amount of air I needed to keep my airways open. This is news to me, since no one had called to talk to me about all this, or make an appointment to do the same... I was/am in the dark, really... except for my family member and friends who have machines who ARE talking to me, and the technicians at the lab!

As I was leaving, I asked what would happen now, and the lab tech said that I could expect that my cardiologist would receive the findings in about a week.

Once again, I heard nothing from the sleep study people or my doctor's office.

So, now the medical supply has called saying that they have a prescription for me and want to set an appointment to have a machine brought to my home to be fitted and set up... of course, I made the appointment, but holy smokes, when do I get to say something about all this?! The doctor prescribed a machine for me with no input from me?! I have no idea what the machine is like (quiet, highly rated, etc) and can find little information about it, other than sales blather. It is a Respironics model 260, but that means little to me.

Am I asking too much to have been included in the steps along the way, or is it typical for patients to be excluded? I am a bit miffed about it, but wonder if I am out of my element here and am expecting too much.

Thanks for reading my rant, and I appreciate any and all comments, suggestions, flames (I am putting on my flameproof long-johns, now!)

Phil_in_CA

Hi Phil_in_CA!

Part of the oppressive ways of our current fallen medical empire in the U.S. is exclusion from the process and of the knowledge necessary to understand what goes on and why.

I think you have been handed an almost perfect "Make My Day" day maker of an experience.

To use it effectively I think it would be wise to do the following:

1. Copy your post and start taking it apart to well define the issues expressed - better express them..
2. Start becoming familiar with those involved in the political processes of making medical related law.
3. Start becoming familiar with any professional and not for profit organizations which oversee medical practice.
4. As you are doing, pursue the knowledge and understanding to know what should have happened
5. Work to well understand why it did not happen.
6. Write the whole thing out several ways and use editors and tutors to help you express it well.
7. Send it to the organizations you now understand are involved. Please help us make the changes that can help so many.

Thanks for inspiring me to take similar action!!!

Todzo

[YogaKitty]

This is very much the way it went with me also. However, I put the brakes on! I refused to go pick up the machine they picked out for me. I found this forum, educated myself, and didn't take another step until I talked to my insurance and my doctor (not that he was any help, really) Come to find out the DME affiliated with the sleep center wasn't on my "preferred" list with BCBS. They kept pestering me until I finally told them I was not going to use them. Got a copy of my scrip and report and started calling DMEs on the preferred list. It took longer to get my machine, but I felt like I had to put my self back in control!

I suggest you do something similar. I wouldn't pick up any machine they just want to give you. Decide which one YOU want and talk to your doctor first.

[Todzo]

This is very much the way it went with me also. However, I put the brakes on! I refused to go pick up the machine they picked out for me. I found this forum, educated myself, and didn't take another step until I talked to my insurance and my doctor (not that he was any help, really) Come to find out the DME affiliated with the sleep center wasn't on my "preferred" list with BCBS. They kept pestering me until I finally told them I was not going to use them. Got a copy of my scrip and report and started calling DMEs on the preferred list. It took longer to get my machine, but I felt like I had to put my self back in control!

I suggest you do something similar. I wouldn't pick up any machine they just want to give you. Decide which one YOU want and talk to your doctor first.

YogaKitty gives sound advise. I looked up the machine they intend to give you (see: viewtopic.php?f=1&t=72302&p=665165#p665165 ). It is a "brick" - no data capabilities. You would fly blind with that machine - I very much believe that to hope to use PAP well you need to be looking at the data from your PAP several times a week!

May we find good care!

Todzo

[purple]

I, shamelessly, as she says it so much better than I can, steal this post from Pugsy:

" New postby Pugsy on Thu Sep 27, 2012 5:20 am
Read the blog at the following link.
http://maskarrayed.wordpress.com/

Personally I would zero in on the Respironics System One models and ResMed S9 models. Both have easy to use and obtain comprehensive software.
With ResMed...avoid anything with the word "Escape" in the model name.
With Respironics...avoid any model number lower than 450. Model numbers are plainly shown on the bottom of the machine.
The link above provides model names. "


The first night was not only to find out whether you might be a candidate for Sleep Apnea, but to determine something about the nature of your sleep problem. The second night should be to help find the right mask, while accurately determining the settings you personally need. Many come to this forum because they did not get accurate numbers on the second night.

My Sleep Doc was very careful to explain to me the order of events I would undergo. After the first night, It would take awhile to read the test. It was then scored by hand, by two different people a small bit of my sleep at a time. It might take several days. After he reviewed those scoring, and he usually did one of them, if he decided I needed xPAP, someone in his office would proceed to get me into treatment ASAP. No second appointment to see the doc as what I needed was to do the second night titration. Some in the office would contact me to get me onto a night as available. Sleep Doc, on my first visit gave me a list of DME's that would accept my insurance, and listed in the order from the reports of sleep patients as to which were the most cooperative, best to patients. When I left on the morning of the second night, Titration night, the techs asked me which DME I wanted. After the Titration night was scored, an prescription for a machine (and all associated supplies) would be faxed to that DME, with the addition of my settings.

I waited for three days and called the sleep doc's office, they said the prescription had been faxed that morning. I called the DME, after I got through the receptionist to the next level, the person said, Oh, I had your name right here to call today. Let us schedule an appointment to get your machine.

What I am trying to say to you. You might have missed some detail from what happened in the sleep study/titration. but the doc and his office have been going with all speed to get you into treatment.

When I went back to see the sleep doc at the end of three months after starting treatment. He did tell me the summary of the data from the study. I do not remember it, and it is not important to my treatment. I frankly would not have understood all the sleep terminology, and I never felt it was the Sleep Docs responsibility to educate me in all about Sleep Diagnosis/treatment in the few minutes he spent with me.

What you might want is the summation from sleep study, it is only about two three pages. If at some point in the future you travel, then having a copy of that allows another doctor to write a prescription for whatever sleep related you need. Else you will be left with a strange trying to get your then sleep doc on the phone, and some how get an order to a local DME for what you want. Which is much harder.

Best wishes.

[Phil_in_CA]

I really do appreciate all that you folks have said. It is nice to know that I wasn't out of the ballpark on this.

I am going to have to call my cardiologist's office tomorrow and talk with them about scheduling a "consult" and talk about machines.

Best wishes to all and I will post a followup.

Phil

[archangle]

Read the links in my signature line.

I recommend you do NOT accept the Respironics 260 machine under any circumstances. For the same price with insurance, you can probably get a machine that will monitor your treatment for apneas every single night and record the data for later analysis. With the 260, all they can tell is whether you're wearing the machine at all, not how well it's working.

Check with your insurance to find out which DMEs in your area are "in-network."

Since they tried to give you a 260 machine, I'll suggest you try to take your business elsewhere to another DME.

[robysue]

Phil,

You are NOT asking for too much to be included in the loop when it comes to decisions about your own health care.

But alas, your treatment by the local sleep center, the doc who must have read the report, and the call from the DME that you've never heard of saying "We've got your machine all picked out for you" is unfortunately a pretty common experience. *sigh*

If you want any of this to change you're going to need to be the one who becomes proactive.

Call the sleep center and tell them you want a copy of the full sleep study report with summary graphs for both studies. Also tell them that you want a copy of your prescription for your own records.

Call the DME and cancel the appointment---at least for now. Tell them you need to contact your insurance company and find out about exactly what your coverage is before you will sign any papers. Also tell them that you are interested in obtaining a machine that records full efficacy data including both AHI data and leak data. The Respironics model 260 they intend to sell to you records nothing except usage data---i.e. how many hours you use the machine each night. These machines are called "bricks" around here because they're about as useful as a brick if/when you run into any of the standard problems that plague newbies.

When you call your insurance company you will want to find out if they pay for the machine by billing code. If they do, the same billing code is used for both the bricks like the PR System One model 260 and the top-of-the-line APAPS that record full efficacy data and can be set in either straight CPAP mode or auto mode. You will also want to get a list of "in-network" DMEs so that you can do some comparison shopping to find a DME that you like and are comfortable with doing business with.

Then start making phone calls and interviewing DMEs. Make them earn your business. Keep in mind that you'll be sleeping with this machine for the next five years or so. So your relationship with the DME is a long term business relationship. Ask lots of questions.

And keep the cardiologists as well as your PCP in the loop. Let them know that you are in the process of finding a DME who will sell you the equipment you want and need. And let them know you're looking for a full efficacy data machine. One of them may be willing to rewrite the CPAP machine prescription so that it specifies "access to AHI data and leak data" and also says "dispense as written". That should prevent a DME from selling you a brick.

For more detailed advice on what kinds of things you need to be doing right now, check out my Advice for those newly diagnosed with OSA

Finally, you write:

Thanks for reading my rant, and I appreciate any and all comments, suggestions, flames (I am putting on my flameproof long-johns, now!)

The only flames you're going to see around here caused by this post are folks flaming the DME (for "giving you a brick") and the sleep center/sleep doc (for "treating you like a mushroom")

Best of luck

[Xney]

Frankly, with sleep apnea even more than most medical conditions, you have to be your own advocate. You're totally in line with wanting to be in on all this!

Smart doctors agree with that approach because they know it increases the success rate a lot. Unfortunately, not all doctors are smart.

Absolutely try to avoid getting a compliance-only machine! Get copies of all your sleep studies and prescriptions.. be involved, you will have a better chance of getting through this.

[maddyn]

I Just went through the process your going through.

I understood the first test was to see what was happening and the second test was to dial in a xpap machine and watch their readings to find the most effective level. What I didn't understand was why I had to wait a week after the study to get a machine. I felt that once dialed in, I should of been taken to another room before leaving to pickup a machine and accessories that I wanted. So I could start my treatment, Instead i went from having a feel good day to being drained again the next.

So a week goes by and I get an appointment. Guess what.... The DME is in the same office as the sleep center i went too.. lol. Man I hope they get better at that. So anyhow, The DME tried to give me an entry level machine also at first also. And I quote "Here is the machine you'll be taking home...." Immediately I said, .."ummmmm no." Then told her the machine I wanted and why I wanted it, after that she just got me what I asked for pretty much. I filled out a questionnaire that i was happy as a clam and went on my merry way.

So no your not asking too much. Dont let them bully you into something your not happy with. Your the one who has to live with it for a while.

[JohnO]

I am going to have to call my cardiologist's office tomorrow and talk with them about scheduling a "consult" and talk about machines.

One of the tricks of this process is figuring out who knows what. Your cardiologist may not know the differences between machines. They may want you to speak to a sleep specialist, or they -may- be satisfied if you explain to the Doctor who will write your prescription that you desire an Auto-CPAP machine with full efficacy data. It is usually the sleep center/medical device people (DME) who try to give you the low-end machines. The Doctor is usually happy to prescribe other machines, but may not know enough to recommend something to you.

John

[Phil_in_CA]

Wow, thanks for all the support!

Now, when I speak to the doctor, I know what to do.

I am going to call the DME as soon as their office opens and postpone (maybe later, cancel) the appointment. I will tell them that I want to see my doctor first.

A friend also advised that I could probably, once I have a prescription (one that does not specify a certain machine), get a much better machine over the internet (cpap.com for instance) for the same price that the insurance company would pay for the brick.

Probably, by the time you read this, I will be on the phone fighting for myself! THANKS TO YOU!

[Phil_in_CA]

Just a quick note before I run out for the morning (to go volunteer in my wife's first grade classroom! LOL!)

I called the DME and they will bring me a PR 460, rather than the 260! First battle won! YOU PEOPLE ROCK! I couldn't have done it without you!

Phil