Am I crazy? Please help me understand this process..

[psychomamma]

I'm just checking to see if I'm crazy for being so upset, or maybe this is everyone's experience??

After three years of being told that my tiredness was all in my head/stress/doing too much, I finally got a sleep study on March 23rd. It took 3 weeks to get the report, which said I had moderate to severe sleep apnea and said "Expedited Treatment Recommended" (which I thought was funny, since they took 3 weeks to tell me that!).

I called to schedule the titration - my doc hadn't ordered it along with the original sleep study. His nurse said "huh. he usually orders them together". I didn't bother to tell her that the reason he didn't is because he didn't think I had it!! Anyway, took me a week to get his referral, and the sleep center said they were scheduling SIX weeks out!! Unbelievable. I raised holy hell, and finally got the titration study scheduled for tomorrow night. I was so happy, thinking I might actually be sleeping by next week!! Apria Healthcare has already called me and is ready to go with the equipment as soon as I give them the prescription.

So this morning, I get a call from the sleep center, who says it will be another THREE weeks after my titration tomorrow night before I get my written evaluation, and then I'll have to schedule a meeting with the reviewing doctor to actually get my prescription!!!!

Am I crazy -- or is this normal?? I have no reference for this.

[Slinky]

Is this "normal"??? Yes. And no. It varies from sleep lab to sleep lab. Whilst the wait is FRUSTRATING it is well worth your while to be an "impatient" patient for the next 3 weeks until you get that written result from your titration study. HOWEVER, I would call the sleep lab back and push for an appointment being scheduled w/the sleep doctor in 4 weeks.

Meanwhile, do your homework. Based on the written results you have from your sleep evaluation check out the fully data capable APAPS and CPAPs. Narrow the field to the ones that interest you at cpap.com, then run a comparison on them and print out both the comparison chart AND the individual brand and model info pages to take w/you to your sleep doctor appointment.

Call your insurance company and ask them what local DME CPAP suppliers they are contracted with. Hopefully you will have the option of more than one. Don't just assume that Apria is your only option w/o checking for yourself w/your insurance.

I would also send the sleep lab a written request for a copy of the full scored data summary report w/condensed graphs (5+ pages) from both your sleep evaluation study and your titration study as well as the doctor's dictated results (1-2 pages) from your titration study when it is ready. They are part of your medical records and as such, assuming you are in the USA, you have a legal right to them under HIPAA.

The written request gives them a gentle headsup that you intend to be an informed patient taking an active part in your xPAP therapy.

[araminta]

Good advice, slinky.
And if you still don't get expedited help, ask to speak to a supervisor.
And try to be polite but firm in getting the process expedited.

[alnhwrd]

Mamma,

You are NOT crazy! Unfortunately, you are under the care of a sleep care system that is functioning very poorly, and you are the one suffering from it. What makes it so much more frustrating is that you know that you have OSA, and that there is a treatment for it that will make you feel better, but you can't get it. If you have a very understanding family doc, you could ask him for a prescription for an APAP set to a wide range which would provide you with some treatment while you wait. Your machine could then be set to the pressure from the titration study results after it is done. Not the best solution, but it is something you could try.

Hang in there, most of us have experianced what you are experiancing to some degree or another. Use the time to research machines and masks so that you will be prepared to ask for and get the best equipment possible when you finally get your prescription.

[robertmarilyn]

Use this time to learn all you can about sleep apnea and the equipment used to treat it. I made it my mission to understand the subject as soon as my first sleep test was scheduled. And then I used what I learned to talk to my various doctors about the subject. This site is a wealth of information and some of the experienced XPAP users have pulled together this info to make it easier to locate pertinent info for us newbies. Read the info under the Our Wisdom lightbulb icon at the top right of the screen.

Make use of the search function. Heck, scan Rested gal's posts and look for links that she posts...if you go through her posts you will probably find links to almost anything you need to know about sleep apnea and the equipment. And she has the amazing ability to take information and process and explain it in ways that newbies and oldies can understand. There is a lot to know so stay calm about it all and use any delays to keep learning. I made a notebook to gather information that I wanted to remember and it's funny, the actual act of gathering the information and putting it in my notebook seems to help me lock it into my memory. I carry this notebook with me to my doctors offices but I don't even have to open it because I remember a most of what I put in there.

[NiteOwl]

Agreed - good advice from the others here. I was in a similar situation--titration wasn't done as part of the OSA diagnosis. The sleep doctor said that it would cost between $800 and $900 to have this done at the overnight sleep lab. I asked if there was a cheaper way to do this, since I would be paying out of pocket because of a very high deductible. He suggested that some insurances, trying to save money, will only pay for a home titration. So they gave me a monitor which measured my breathing, pulse, oxygen levels, etc. along with a rental machine and mask to use overnight. Total cost was $225 = $175 for the test and $50 to rent the machine and mask. It still took almost a week to get them to fax me a prescription. I used that week to do all the research I could (as others have suggested).

[psychomamma]

Thanks to all of you! I am reading everything I can get my hands on here in the forum - such a wealth of information. A lot of stuff I don't totally understand and think I need to get the equipment and see how it all works before some of the stuff will make sense.

I go for my titration tomorrow night, though, so it's a great idea to bring my specifications for the equipment I want so it can get written into my prescription and also a letter stating that I want all my results in writing. Great ideas! Thanks for all the support!!

[boston]

to avoid headaches later when you decide what machine you want, get your doctor to write your prescription for that exact machine, and for 'mask of patients choice'
make sure you get copies of your sleep study and your presciption to keep.
I keep mine in case were traveling and I need to get something. from what ive seen, some dme's will sell you a hose or whatever without a prescription and some want the prescription.
your ahead of the game coming here, just be informed and make sure you get the therapy you deserve.

[psychomamma]

Thanks, Boston. You've got the exact equipment and mask that I'm going to ask for, so I may be emailing you privately if I can't figure some things out!! Hope that would be okay!! Lisa...

[kteague]

About the wait to get the titration report... it is common practice for the expected time of available results told to patients to include a cushion so the patient won't start bugging them too soon. Your results will likely be ready sooner.

You could ask to speak with the office manager. Quote the recommendation of expedited treatment and express your concern that too much time has already lapsed for that recommendation to be followed. Ask what is the earliest possible date the report could be ready and ask to be scheduled immediately thereafter. Take the soonest appointment they will give you, and tell them you want to be added to the list to take the slot of any cancellations prior to your scheduled appointment if the results are in sooner. When the earliest possible date arrives, start calling and ask if they are in, and ask about cancellations, reminding them of the recommendation to expedite treatment. Can't hurt to ask, and may even help.

In the meantime, it may help some to elevate the head of your bed a few inches (not just add pillows), and takes measures to make sure you stay off your back.

Keep us posted.

Kathy

[GumbyCT]

Am I crazy -- or is this normal?? I have no reference for this.

Let's say it is not very unusual at all. There are rumors that some receive better treatment but not from Apria. So you are not done yet. It took a month to get my machine from Apria and then it was sent to me via UPS. So I was on my own. It took me several months to find this forum, so you are miles ahead there.

Couple other thoughts and ideas. You can buy a machine from Craiglist or have any doc (not just a sleep doc) write you a script (even before your titration) just make sure that whatever you get is data capable and preferably an auto.

When dealing with Apria, it will be in your best interest to have the script specify the exact make & model or they WILL give you a bottom line machine. Once you accept it, you will have a hard time trying to exchange it. So read and make notes of the machines which are data capable, so you will know when the time comes.

The script always has to have the pressure or pressure range on it but most docs don't specify the make & model so you will have to ask. And if the doc doesn't specify auto they won't provide an auto.

Rested Gal and Slinky have many posts on here telling which make & models are data capable. And some tips on writing a prescription.

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf

Start at the Yellow Lite bulb - Our Collective Wisdom found at the top of the page at http://www.cpaptalk.com
our-collective-cpap-wisdom.php
new-cpap-user.php

Watching this will help -
http://www.resmed.com/en-au/clinicians/ ... 40x380.swf
http://www.resmed.com/en-us/patients/un ... 40x380.swf
http://www.nbc.com/Saturday_Night_Live/ ... -2/742141/

take a breath, put on your reading glasses and get comfy
there is NO wisdom pill
and one size does NOT fit ALL
Faces are like fingerprints

Reading this will help -
For Acronyms & Definitions
http://www.sleepnet.com/definition.html

Where A CPAP Newbie Should Start
viewtopic/t35702/Where-A-CPAP-Newbie-Should-Start.html

READ cpaptalk.com FAQ
faq.php


Learn to search
use Google & the syntax "search words" site:www.cpaptalk.com
or the Advanced Search at the top of each page.
or here - viewtopic/t35702/search.php

This is the Yellow Lite bulb you'll hear people mention aka "Our Collective Wisdom" -
our-collective-cpap-wisdom.php

Search here if you like videos-
cpaptalk-cpap-video-movie.php

Read some more.
Good Luck,
GumbyCT

[Bearcat42]

Slinky is right, it is well worth the wait. I went through the VA and that can be a slow process to say the least but I am already glad I went through it, even though I have only had my machine for 2 weeks.
Be patient, but dont let them jerk you around either. Just hang in there and the day will come when you can get some really good sleep.

[TonySanDiego]

One last thing.

With Apria, you should have the doc prescribe Full Face or Nasal Mask or pillows. Apria won't give you a full face mask without it being explicitly prescribed.

(That being said, I own 3 full face masks anyway)

Tony

[fuzzy96]

in addition to the setup boston has push for a full face as a backup.
you'll find with colds ,allergies and stuffiness for whatever reason you'll be able to use a full face rather than going withouot your therapy.

most insurances and medicare only pay for 1 mask every 6 months so you may have to go out of pocket. once you've been at it a while you'll have old ones for a backup.

another good place is cpap auction,you can get a backup really reasonable but it is an auction site so do your homework check feedback etc

[charliemack]

I had a similar experience. It took almost 4 weeks to get the sleep study done. Then, it took another 2 weeks to see the doctor. Now, after3 months, I find out that the sleep doctor only has appoints at this sleep center on Monday's and Thursdays. Kind of tells you why it took so long.

Oh well, I got it done, sleeping great.