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[Diagnosis] Long Time to Get Prescription for Machine
#1
Long Time to Get Prescription for Machine
Hi Folks - Thanks for this forum and for any advice you can offer.  As described below, I am concerned that it is taking too long for me to get a prescription and machine to treat my sleep apnea.  Not sure whether there's anything I could/should do and would appreciate any thoughts: 

After repeatedly falling asleep while driving and at work (desk job), I met with my doctor in early May.  Doctor cleared a home sleep study with my insurance company.  I did a home sleep study around May 19th.  Results are here (new user, so I removed period after "imgur"):
http://imgur com/JGvtYce
http://imgur com/en1q7ao

I was surprised and, frankly, scared by the results, which reflect, among other things, an AHI of 58 and lowest oxygen saturation rate of 74%.  Also, I didn't receive the results until around June 7th when the sleep center (not my primary care doctor) called me up to arrange "another sleep study" and told me I have severe sleep apnea.

On June 20th, I did an in-center CPAP titration study.  It was my first time wearing a mask/using a machine and I definitely had trouble falling asleep on my back.  In any event, I think I must have slept at least 4 to 5 hours that night and recall being woken up 3 times when the tech adjusted my mask.  Yesterday (while I was out of town), I received a voicemail from my primary care doctor who said the sleep center was "not able to do the entire study" because I was "worse than they were able to figure out by the end of the night" and they never got to a point where they found a setting that would work for me.  Apparently, they now want to setup another in-center titration to (I guess) continue where they left off last time.  So that's my situation now.... I have not yet arranged this additional titration session.

Since learning the results of my home sleep study in early June, I'm now apprehensive about going to sleep every night without a CPAP/APAP machine.  Also, it will now be at least another week before I can setup another night to do the titration, another 2 weeks after that to get results, and then who-knows-how-much-longer to get an actual machine.  So it seems like it's going to be at least another month before I can get help.  A few questions:
  • Is this unnecessarily dangerous/taking too long to get a prescription and machine?
  • Is there a reason my doctor should not prescribe an APAP before optimal pressure/settings are determined? (should I go find one on my own?)
  • Would it make sense to get a referral to a sleep doctor to try and accelerate this process?
  • Am I overreacting?
Thanks again, in advance, for your help and for all of the other resources this website provides.
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#2
RE: Long Time to Get Prescription for Machine
Your doctor isn't going to give you a prescription until you have optimal pressure/settings. Just isn't going to happen. I couldn't wait any longer, so bought a used machine from Craigslist and used that. It was GREAT! However, you do need to stop using the machine a couple of nights before your titration or you may get incorrect results.

As an FYI - with the exception of California, anybody can sell their xpap equipment legally. So buying from Craigslist or OfferUp is just fine. Just remember that you want an Autoset and since you will later use this for a backup, try to get lowish hours (under 3,000 is about a year's worth of use). You might actually have better luck with Offerup as in Florida, it's not deluged with ads from questionable places.
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#3
RE: Long Time to Get Prescription for Machine
[Image: JGvtYce.jpg][Image: en1q7ao.jpg]



I posted your images for you. I would try to get the tritration sleep study as soon you can. It is possible that a CPAP won't work for you and you may need a different type of machine.

Dave
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#4
RE: Long Time to Get Prescription for Machine
If you haven't already read New to Apnea - helpful tips to ensure success (see my signature).  It contains a lot of information on apnea it's treatment, and what you are going thru.
On your next visit to the lab insist on trying several masks, especially one of each major type, Pillows, nasal, and full face mask.  Mask can be the most difficult part of therapy and the sleep lab should have several, take advantage of this opportunity.  Read the Mask Primer for info on masks.  Tell your Dr that you want the AutoSet so, if needed (and it will be needed), he can look at the detailed data and change the settings on the machine if needed.  You will be able to regardless.


Fred
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#5
RE: Long Time to Get Prescription for Machine
You should have been started on therapy right after the initial home sleep test. No reason the Dr. shouldn't have started you on at least auto-cpap. Based off of your study with the central and mixed apneas, you should have been started on an auto-bipap. Again, no reason not to have been started right away. I question the Dr. on this one. Ask your Dr. to order an auto-bipap while you wait for your next titration study. Or find a Dr. who will get your started on therapy right away.

I would not buy your own machine at this point as you most likely will end up with a more advanced model. either bipap, bipap s/t, or bipap asv. That will need to be determined at the sleep lab. And that's why they couldn't get you fixed in one night.

I don't think your overreacting...

Good luck.
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#6
RE: Long Time to Get Prescription for Machine
Again I agree with dmeRT. I suspect you exhibited more signs of central apnea during your titration test that will require evaluation for bilevel therapy and possibly ASV (adaptive servo-ventilation) to deal with the central apnea (CA) that a CPAP cannot treat. Simply starting you on auto bilevel however may have resulted in failure anyway because the pressure support and variable pressure of auto bilevel can actually make a CA problem worse.

I would ask the doctor to level with you and discuss or provide the record of the actual studies to this point. Those records are yours by law under HIPAA. You should be fully informed of what is being done, and we can help you to understand the process. Depending on your insurance and its requirements, you may be required to fail a trial on CPAP or BiPAP before being provided a bilevel machine with a backup rate like ASV. It is also possible the doctor may be able to demonstrate that you cannot be titrated to CPAP or bilevel without a backup rate, and go directly to ST (spontaneous/timed) or ASV. That is fair game for a discussion of his strategy and initial findings and recommendations.

A final consideration is what is this costing you financially. Multiple studies and potentially expensive machines add up to a lot of cost if you have high deductibles and co-pays. If this describes your situation, you may want to let your doctor know that it is a financial priority to expedite the process.
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#7
RE: Long Time to Get Prescription for Machine
Hi Vesimir,
WELCOME! to the forum.!
I wish you good luck as you start CPAP therapy and also with getting the machine you really need.
Hang in there for more responses to your post.
trish6hundred
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#8
RE: Long Time to Get Prescription for Machine
Thank you for all of these responses and for the warm welcome to the forum.

I do not have test results from the in-center study in hand to post here (will post when I get them), but was told that I only slept 46% of the time, which was evidently between 3-4 hours.  I'm now working to setup another night at the sleep center -- they apparently have availability as soon as this week if insurance signs off.  Apparently, the sleep center wants to continue CPAP titration and then try bilevel and/or bipap.  Also, my primary care doctor has said they will try to get results quickly from the sleep center and thinks I should be setup w/ some machine within the next 2 weeks.  I'm willing to wait this long if it means I get the right therapy.

I think the sleep center was willing to have me forego this additional sleep study, prescribe an APAP, and just see how the results are over the course of the month.  Maybe I should have jumped on this opportunity, but I figured it'd be better to wait a couple of weeks and potentially receive the right type of machine.

Will update again soon.
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#9
RE: Long Time to Get Prescription for Machine
There are 2 main brands of machines, and with the auto and bilevel machines The ResMed respond to events faster than the Philips Respironics machines. Both will deliver solid treatment. The Philips requires a tighter range.

Many here have a slight preference for the ResMed. The BiLevel/BiPap is to look at and treat your Central and Complex Apnea. This is a very good thing, many have to fi9ght the system to get these machines.

Fred
Fred Bonjour - Project Manager and Lead Tester for OSCAR - Open Source CPAP Analysis Reporter 
OSCAR

Download OSCAR
New to Apnea? Helpful tips to ensure success
Mask Primer
Dealing with a DME
Organize Charts
Attaching Charts

INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
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#10
RE: Long Time to Get Prescription for Machine
Update:  I obtained a copy of the report from my in-center sleep study.  I still can't post links, but the report can be found here:

http://imgur com/a/0uUf4  (if someone can post images, would be appreciated)

I don't understand all of the report, but it seems I got very little sleep overall and that AHI was still too high.  I seemed to have better results as pressure was lower (I think).  The report does say "The patient failed with CPAP up to 15 cm H2O with persistent events and associated desaturations."  Would this failure be expected to trigger any particular coverage w/ my insurance?  The report also recommends repeating the test starting w/ CPAP 10cm H20 and likely requiring a switch to BiPAP during the titration as higher pressures are reached.  I'm sure I'm not understanding something, but why would we use higher pressures when it seems like I was doing better w/ lower pressures on CPAP (I'm assuming 11 cm H2O is less pressure than 15 cm H20).

The report also says "Alternatively [as an alternative to repeating the polysomnography], one can consider AutoCPAP with a higher range of 8 to 20 with close clinical monitoring."  Not sure why this would be a reasonable alternative given that CPAP didn't seem to be working.

I'm now waiting for insurance to approve another PSG.  Last time, insurance outsourced the decision to approve the PSG to another company, so I'd guess they are doing so again.

I'd be interested in hearing any thoughts on this new report or on how I can expedite the process of receiving proper treatment.   Thanks again.
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