From diagnosis to DME with no inbetween?

[AMK]

I had a sleep study and was told I had OSA in a short email. They were going to send me to a DME of their choice. I hated the learning curve; I was very upset for about 3 weeks as I tried to figure out on the internet what I needed. Decided on that AirSense 10 for Her. Found out the DME chosen for me would not agree to get that for me. Found another DME. Got the machine. I never saw a doctor or nurse in all that time. No one discussed my diagnosis with me. The DME I chose gave me my machine but the woman there has nothing to say, won't even advise me regarding masks. I was basically handed the equipment and sent on my way. I was told I would see a sleep nurse in mid-April to "find out how I'm doing." Really? I made a lot of noise and they fit me in last Friday when they had a cancellation. Went in and the sleep nurse said she couldn't access my data. Accomplished nothing. I am exhausted and feel like I'm physically falling apart. I'm giving them till this coming Friday at which point I'm going to tell them that I am going into the clinician's menu and fiddling with the pressure settings. This has been ridiculous and I have cried more than once. I am ordering masks from a 'net supplier to try out to see if I can figure that out by myself. It's just been hell.

[archangle]

I am really shocked that people don't get to see a doctor over this and just get a phone call. Most places I have lived they were not allowed to give bad news of any kind over the phone. OSA is a major life changing diagnosis and it should not be left to a phone call from some sales guy at a DME.

The medical office should have a proper protocol for dealing with major issues like this. If you have to give people bad news you need to provide support options.

Actually, I'm usually glad to get the news, even bad news, in a phone call. Many things don't need the time and expense of an office visit.

Newly diagnosed apneacs/CPAPers should really get an in person one on one from a professional. Unfortunately, in our assembly line medical system, the doctor often doesn't understand much about CPAP or even apnea, and the DME is often someone who wasn't honest or smart enough to make it as a used car salesman, so it's like buying a CPAP from your local Walmart.

[PollyCT]

I had my first phone call from the doctor's office last Thursday. I called them back later on Thursday, Friday, and Saturday. It's Monday evening and I never got a call back from my doctor's office. (Each time I was asking for a copy of the sleep study, for the prescription, and on one occasion I asked to talk to the doctor.)

On Saturday I used cpap.com's website to request that they request a copy of the prescription from the doctor. About an hour ago I got an email from cpap.com and they'd gotten the prescription back, and I can order online. Looking at my prescription I wonder how bad my sleep apnea is. It says it's for a pressure of 9cm. Is that a lot, or a little or what? In the absence of seeing the sleep study I just don't know.

Anyway, I'm pretty impressed by CPAP.com (and not just because they support this site). I don't know what the original prescription said, but cpap.com sent my doc their own version of the prescription, and it's pretty clear as to "patient preference." I like that.

Still need to get the sleep study, but progress has been made!

Sorry others haven't had the same luck with United Healthcare as I have. I know that when I elected my coverage I chose the plan that allowed me the greatest latitude on where and when I could go. It pays less coverage, but I have more flexibility.

[Pugsy]

The pressure needed to keep the airway open has no bearing on the severity of the OSA. A person could have really severe OSA with AHI over a hundred and maybe only need 6 or 7 cm and someone else might have a rather "mild" severity with maybe 12 AHI and need pressures in the upper teens and even over 20 cm. It's the airway tissue patency that dictates the pressures needed to hold the airway open and not how often it wants to flop shut.

A pressure of 9 cm is probably just about in the middle if we did a bell curve of pressures needed.
As a point of reference most machines start out at 4 cm and the maximum is 20 cm. For those people needing more than 20 cm pressure we get into the bilevel machines since they can go to 25 and there's a few very special machines that will go to 30 cm.

[TexasTom]

Oddly enough my modem is now recognized. They just had to enable it from their side.

Meanwhile in todays mail was a "Please fill out a survey on how well Apria meets your needs" I think I'll enjoy filling out this one.

[bwexler]

TexasTom the problem with their survey is they only allow positive numbers on the response scale.
I have often let them know how much I appreciate their service. I now finally own my machine and have a new insurance company this year. I have not ordered anything since December so I have no idea how they will treat me this year with the new insurance.
CTPoly you need to speak up. One call a day can go unnoticed. I start with 2 calls a day and work up to I will hold until they are available to speak to me. I have my blue tooth head set on and listen to their music on hold while I continue to do what I need to while I wait. I also escalate to management and senior management until I get real answers, even if they are no. The folks who fail to provide me service at least remember me.

[Tatooed Lady]

I had a sleep study and was told I had OSA in a short email. They were going to send me to a DME of their choice. I hated the learning curve; I was very upset for about 3 weeks as I tried to figure out on the internet what I needed. Decided on that AirSense 10 for Her. Found out the DME chosen for me would not agree to get that for me. Found another DME. Got the machine. I never saw a doctor or nurse in all that time. No one discussed my diagnosis with me. The DME I chose gave me my machine but the woman there has nothing to say, won't even advise me regarding masks. I was basically handed the equipment and sent on my way. I was told I would see a sleep nurse in mid-April to "find out how I'm doing." Really? I made a lot of noise and they fit me in last Friday when they had a cancellation. Went in and the sleep nurse said she couldn't access my data. Accomplished nothing. I am exhausted and feel like I'm physically falling apart. I'm giving them till this coming Friday at which point I'm going to tell them that I am going into the clinician's menu and fiddling with the pressure settings. This has been ridiculous and I have cried more than once. I am ordering masks from a 'net supplier to try out to see if I can figure that out by myself. It's just been hell.

Personally, I would change settings to what works NOW, then tell them later, if they ask. Keep track of your settings in case they reset anything, so you can use what works best for you.

[PollyCT]

Woo hoo! Got a call from the doctor's office today - from an admin though, nobody medical. She said they'd faxed the script where I wanted (which I knew), and that they'd put my sleep study in the mail to me. Can't wait to see if it's the summary that some of you have mentioned, or the whole shebang, but it's progress! Oh, and the machine and supplies will arrive tomorrow (assuming no adverse weather conditions - given this winter NOTHING is guaranteed).

Now I need to go start reading the instructions, so I can figure out how to set the darned thing up. I'll start a new thread when I start calling for help on that.

Thanks again everyone, this site is great!

[yaconsult]

Congratulations! It's great to see people spending the time to do the research in advance instead of getting stuck with something that will put additional roadblocks in their path.

Now, your journey begins... Think of it as embarking on a great quest for better rest and dreams!

[Twelve12]

This has been an interesting thread to read and I have been curious about the various paths people have taken.

Mine went like this...

I started seeing new doctor (a nurse practitioner) in 11/14. I knew I had a few health issues to get sorted. I had put it all on back burner because I am a busy person. We went over quite a few things in Nov and I mentioned that I suspected I had sleep apnea -- that i used to have it, did better for a while, but now think it's returned. We didn't focus on it too much because there was one other important issue to get sorted first. I had severe anemia. My doctor suspected my tiredness possibly linked to that. By 01/15, anemia better (not great moving toward lower end of normal ranges). For several years my sleep has been horrible so finally in Feb, I went ahead and sent my doctor a message through patient portal. I had just received some lab work about anemia and then I just added a sentence about probably going through with a sleep study. By the end of the day, a person from a home sleep study place called me and we set it up for early March.

I had home sleep study. It was very hard to sleep with the equipment and I wasn't sure the study would actually let me get into a deep enough mode of sleep to catch apneas.

I waited three weeks for results and called the sleep study contact a few times. She never returned my calls. I finally messaged my doctor and she said she had just received sleep study results and I have moderate sleep apnea. She said she would referring me to a DME. There were about three days in between doctor telling me and DME calling me. I read a lot of stuff here and at other sites, so I already kind of knew what I wanted insofar as machines but was unsure how it all worked -- could I choose the machine, etc.

DME called and wanted to set an appointment and said she had a machine in mind. She had the ResMed AirSense 10. I said I wanted the ResMed AirSense 10 For Her if I could get that one. She said yes - it would just take a week to receive verses the other machine was already there. I said I would wait the week. She suggested the ResMed AirFir P10, which is what I wanted to try anyways. She said about 80% of her patients choose that mask. So right now, I am just waiting for the machine. I do want to follow up and get the actual results from my sleep study and when I meet with DME, I will ask about pressure settings. However, I will also use input here and be active in figuring this out.

A few things I thought were interesting or funny. I have yet to actually speak with my doctor from request to diagnosis. I really like the message system my doctor's office uses. They are quick to respond and the info is so very clear. When the person from sleep study place called, she was surprised I knew she would be calling and knew what a sleep study was. She calls a lot of people referred by their doctors but don't know anything about sleep study, apnea, etc. The DME person really let me guide in my preferences. She had info about health insurance but I had already looked it up.

This was a different path from the first time I was diagnosed with sleep apnea. That was more like me in denial and doctor pressuring, referral to pulmonologist, in lab sleep split sleep study with masked placed on half way through and then DME. Few years after that, I suspected sleep apnea better and asked for new sleep study. That came back with no sleep apnea.

It seemed quicker path the second time around. I think the cost of extensive pulmonoglist work-up and sleep lab are high and money saved by home sleep study -- and in the long run perhaps money is saved by a few referrals that don't pan out to be sleep apnea. I have several doctors and feel like I can communicate well with them. Being a strong advocate is most important thing.