Diagnosed with Severe Apnea, they make me wait for CPAP

[AslihanBiyikoglu]

Hi all,
Today I have been diagnosed with severe sleep apnea with overall respiratory disturbance 44.9, AHI 44.6, lowest oxygen 87%.
They told me I need to go back to get a fitting and 5-night at home titration with their machine on mid July, return it and then wait another 3 weeks to get the results, only after that I can get the prescription to get the machine.

I used a CPAP 11 years ago, they just gave me the machine, fitted me to a mask and machine was auto adjusting. I just went back, they checked and readjusted it. Back then I had only mild apnea and then they told me I can stop.

Now, is this titration normal? Is it necessary? After learning I have severe apnea now, I don't want to wait 2 more months. I don't know what to do. I told them I was also going to have to travel in the coming month, which means I will have to wait even more, they didn't really care. They said then I'll start 3 months later.

I would appreciate some guidance and suggestions.
Thanks,

[Pugsy]

Who is your insurance with?
I asked because it sounds like Kaiser procedure.

[AslihanBiyikoglu]

This is with Palo Alto Medical Foundation and I have Aetna.

[Pugsy]

Well, sounds like they are doing what Kaiser does.
Classes and then send you home with an apap for a week to figure out pressures instead of a formal in lab titration study to figure out pressures.

If you want your insurance to pay for things you have to do it their way.

Now you could go ahead and buy a machine privately and DIY things until your insurance gets you a machine and then your self pay machine could be delegated to back or travel machine status.
You also have to figure out what mask you want.
So you can self titrate if you want to and have the money to fund the purchases that will be needed.

[AslihanBiyikoglu]

Interesting! So how come my first time they just sent me with a machine and mask?

This process is ridiculous, I saw the doctor first in February, they did the sleep study in May and I was able to see the doctor today. It will be more than half a year before I can get a treatment. I am quite stressed right now.

Thank you so much for your answer.

Best,

[Goofproof]

In Life everything Changes, there is no freeze frame. Jim

[BlueDragon]

There are lots and lots of steps in the process, and each step has been very slow for me. It has been almost four months since I emailed by doctor and suggested I should have a sleep study. Wait for the appointment (6 weeks), wait for the referral for a home study, wait for that, wait for the results (AHI=24, RDI=54), wait again for a Rx for the lab study, wait for paperwork to go back and forth between lab and Dr (another 6+ weeks), schedule lab study when paperwork all correct, wait for the results (2 weeks), wait for the Rx paperwork to go from lab to dr to lab to DME (several weeks), wait for paperwork to go back and forth from DME to dr to get it filled out "right." I'm now waiting for Dr to return paperwork to DME provider so I can finally get my APAP machine. If I get the machine next week, it will be a full four months from when I started this process.

[SewTired]

It's absolutely horrible how they draw all this crap out and I sympathize with you. I couldn't even drive any longer and bought a used unit. It was wonderful! If you are diabetic, they don't wait 2 months before treating you - they start right away. Why torment someone with sleep apnea? Because it makes more money that way.

I personally would call the doctor's office and tell them that instead of waiting for 2 months for treatment, you want a prescription for an auto-titrating machine NOW. The doctor can then adjust the settings based on the info from the SD card. Insurance doesn't care whether you have a titration or not. They just need the initial sleep study information where you were diagnosed.

If they won't budge, get a used unit. There is a member here (LSAT) who currently has an S9 with zero hours for under $400. Pretty darn good buy. It works with Sleepyhead and members here can help you with settings. Get a copy of the original study (including raw data). You can get a mask from our sponsor by buying the replacement parts and assembling the mask.

The process for me started in January and I didn't get a machine through Medicare until May. I bought a used machine in March. Nearly all the hold up is the sleep clinic scheduling and not doing a split night so that they could milk the system for another sleep study 'titration' which was completely unnecessary for most people (maybe not for me because my problem is my heart, not apnea).

[ChicagoGranny]

they didn't really care.

They are uncaring assholes. Just going to work and putting in their eight hours.

[Janknitz]

I have Kaiser and there everything is done by protocol. There's a lot of hurry up and wait. But after my home sleep test, my O2 and AHI were so bad (not as bad as some, but much worse than yours) so the RT working with me just grabbed a titration machine and told me to keep using it until I got my own. She was breaking protocol, but she felt like it wasn't safe to send me home without it.

It was a little miserable because at that point Kaiser was using PR S1's and they didn't include humidifier chambers with titration machines. The machine was noisy and dry and I ended up using it for about 1 month. It made the adjustment that much harder. But I survived. . .

You might want to use this time to research how much out of pocket it is going to cost for you to wait for your insurer to cover the machine (if anything) and how much it would cost out of pocket if you just buy your own. Don't forget to factor in the hassle of dealing with the DME if you want insurance to pay for your machine--it's worth a lot of money (to me) not to have to hassle with them.

[nicholasjh1]

Interesting! So how come my first time they just sent me with a machine and mask?

This process is ridiculous, I saw the doctor first in February, they did the sleep study in May and I was able to see the doctor today. It will be more than half a year before I can get a treatment. I am quite stressed right now.

Thank you so much for your answer.

Best,

Personally I'm giving my goto answer... Yell at the insurance company about class action law suits until the they change the procedure for you.

[Janknitz]

Personally I'm giving my goto answer... Yell at the insurance company about class action law suits until the they change the procedure for you.

Most people don't want to yell until hell freezes over.

[AslihanBiyikoglu]

After reading hours and stressing over it last night, I wrote a letter to the doctor and said I already have a health anxiety and I don't want to wait 2 more months to start my treatment after they told me I have a SEVERE condition.
They called me this morning and told me to come to the office!!! I just went and got the home trial machine and even took a 1 hr. nap with it. I really want this to work. I am miserable at work and basically life because of being tired all the time.
You guys are amazing, thank you. I'll update how it goes.

Best,

[AslihanBiyikoglu]

It's absolutely horrible how they draw all this crap out and I sympathize with you. I couldn't even drive any longer and bought a used unit. It was wonderful! If you are diabetic, they don't wait 2 months before treating you - they start right away. Why torment someone with sleep apnea? Because it makes more money that way.

I personally would call the doctor's office and tell them that instead of waiting for 2 months for treatment, you want a prescription for an auto-titrating machine NOW. The doctor can then adjust the settings based on the info from the SD card. Insurance doesn't care whether you have a titration or not. They just need the initial sleep study information where you were diagnosed.

If they won't budge, get a used unit. There is a member here (LSAT) who currently has an S9 with zero hours for under $400. Pretty darn good buy. It works with Sleepyhead and members here can help you with settings. Get a copy of the original study (including raw data). You can get a mask from our sponsor by buying the replacement parts and assembling the mask.

The process for me started in January and I didn't get a machine through Medicare until May. I bought a used machine in March. Nearly all the hold up is the sleep clinic scheduling and not doing a split night so that they could milk the system for another sleep study 'titration' which was completely unnecessary for most people (maybe not for me because my problem is my heart, not apnea).

I agree with you 100%. I called in January to get an appt, saw the doctor in March, they scheduled the test in May and I was able to see the doctor to get my results yesterday!. Assistant doctor came in and explained my results, doctor just came in at the end to confirm. I could've seen the assistant way before, I thought it was important to see the doctor!
If they didn't give me the machine today, it would have been more than 7-8 months for me from the time my physician referred me to a sleep doctor to start a treatment.

[zoocrewphoto]

After reading hours and stressing over it last night, I wrote a letter to the doctor and said I already have a health anxiety and I don't want to wait 2 more months to start my treatment after they told me I have a SEVERE condition.
They called me this morning and told me to come to the office!!! I just went and got the home trial machine and even took a 1 hr. nap with it. I really want this to work. I am miserable at work and basically life because of being tired all the time.
You guys are amazing, thank you. I'll update how it goes.

Best,

That is awesome!

I postponed diagnosis for years as I didn't understand what sleep apnea really is and how bad it is. And my mom's experiences led me t believe I had to sleep early during the study (I am a night owl), and that I had to use a nasal mask (I am a mouth breather).

Once I confessed to my doctor, I was able to get a sleep study only a couple weeks later. It was a split night study with the best night of sleep in years. I actually dreamt the next night that I had to wait 6months for a machine, and I was angry. Fortunately, it was less than 2 weeks. I have never been so excited to go to the doctor or get a machine. I don't know if I would have gotten such fast service now. This was 6 years ago. I had better insurance then, and I think delays were shorter in general too.