Hurry up and wait...a sleep apnea journey

[SleepDepraved2]

I've had my machine for almost a week now. This sleep apnea journey has been plagued by many delays:

1) Once I had the first sleep study on May 18th, I would have had to wait until July 3rd for the second one if I hadn't gotten on the cancellation list. As it was, I waited that long to get the first one, didn't want to wait that long for the second one! Luckily, they had a cancellation that got me in on June 6th.
2) Once I had the second study, the sleep clinic said they would fax the prescription to the DME of my choice (they gave me a choice of 3 and I was limited by who my insurance would work with.) The paperwork said that if I hadn't heard anything within 10 business days to call them back. Time ticked by, and 10 business days later, I called the sleep clinic. They gave me the DME's number. Turns out they never got the paperwork. Five days later before they finally got the order due to the one person at the sleep clinic that the DME deals with being out of the office. Finally got my machine 22 days after the second study.
3) First night of use, I had horrible aerophagia. I called the RT the next day and he said the pressure was probably too high and needed to be adjusted. But that he couldn't do it, it would take a prescription from a doctor. Thus began the merry-go-round:
a) Call the sleep clinic. They can't change the pressure, only the doctor that ordered the sleep study could (my primary care doc).
b) Call primary care doc's office. The nurse says the doctor can't change the pressure because he doesn't know enough about it. Call the sleep clinic.
c) Sleep clinic suggests calling the pulmonologist's office associated with the clinic.
d) Call the pulmonologist's office. They said I was not a patient there, so they couldn't help me. Call the clinic.
e) Clinic again said they can't help me, but call the pulmonologist. Phooey on that!
f) Called the DME again. The secretary there looked up my prescription and found the doc's name who reviewed the study and made the recommendations. Doctor was at the same pulmonologist's office.
g) Called the pulmonologist AGAIN. I told them that their doctor had made the original recommendations, so why couldn't she call my internist and pass on a suggestion so that he could write the prescripton. Nope, wont' do it.
h) Called the internist's office and asked how the heck I could get the machine adjusted when nobody would take the initiative to do it? They said the only thing to do was to make an appointment with the pulmonologist and establish care there.
i) I called and made an appointment for July 3rd and had to wait over the weekend to go.
j) Finally made it to the pulmonologist. Here everything would be fixed and I would be on my way with an adjusted machine, right? Ha! They couldn't get the data off the card from my machine, which I had brought with me. I told them I had been able to read it fine with my computer and as far as I knew, had not erased anything.( I used to be a programmer, so I do know how to operate a computer.) I had downloaded Sleepyhead and looked at the data myself. They looked blank..PA had never heard of Sleepyhead and seemed weirded out that I would have looked at my own data. THe long and short of it was,though, that they wouldn't do anything to adjust the machine without looking at the data, so off I was sent to the DME so they could get the data off the card and fax it to the pulmonologist's office. And now it's the holiday and I'll be waiting probably till the end of this week or the beginning of the next before they decide anything.

I've had some bad nights with the aerophagia and some nights that weren't too bad. Last night wasn't bad. I woke up a number of times to burp, but didn't get the stomach pressure I had on the first night and some of the other nights and not nearly as much gas moving on into my bowels. I find if I have bad aerophagia, the next day I have heartburn all day. So I would like to get this taken care of.

In the meantime, I feel really great. I've gotten to the next part of my journey, i.e. wanting to sleep much more and pay off my sleep debt. The first couple of days I bounced (or maybe blasted up ) out of bed ready to tackle the day. The last couple of days, I wanted to just keep sleeping and found I wanted a nap in the afternoon and an early night. So at least if I have to wait, I can sleep to pass the time. I have to go out of town on the 16th, though, to a convention where I will be on the go for a week. Hope I can pay down most of that debt before then! And not have to worry about making too much...er...noise when I wake up in the morning. At least I will have a room to myself, but still...

[Janknitz]

Sounds very frustrating because you are trying to be a good, obedient patient. Read a lot here and you will see that you have options--you don't have to put up with all that.

[tiredmama]

We need a banging head against a wall icon

There was a lot of back and forth and delays at the start of my journey, so I do sympathize with you. I hope and pray that the settings I have are good, because I suspect there'd be a lot of dancing around to get them adjusted, and while I know the information is available to adjust it myself, I'm reluctant to do that. I'm already the crazy person who wanted to be able to monitor her treatment with a data-capable machine...

I love your username

[SleepDepraved2]

Sounds very frustrating because you are trying to be a good, obedient patient. Read a lot here and you will see that you have options--you don't have to put up with all that.

I've been obsessively reading lots of topics up here! I've always believed that if you have a problem, the more you know about it, the better.

I am happy that the pulmonologist does write very specific prescriptions for equipment, which is why I have a BiPAP and not just a brick without a card. They look at the data and use it, which is comforting to know. I have been pleased so far with the DME, the office I go to is their CPAP center and that is all they do. They seem to want to bend over backward to be helpful.

The PA at the pulmonologist's office seemed to think I might be a good candidate for an APAP, so maybe I'll be trading in my machine really soon.

[SleepDepraved2]

We need a banging head against a wall icon

There was a lot of back and forth and delays at the start of my journey, so I do sympathize with you. I hope and pray that the settings I have are good, because I suspect there'd be a lot of dancing around to get them adjusted, and while I know the information is available to adjust it myself, I'm reluctant to do that. I'm already the crazy person who wanted to be able to monitor her treatment with a data-capable machine...

I love your username

Thanks!

Having watched the video on the S9 series and finding my way into the clinician's menu that I was not supposed to know how to get to, I am the same way. Before I start tweaking anything, I need to know more about it, but I want to keep my options open. And getting into that menu was the only way to change the time on the machine, which was an hour off due to it now being daylight savings time. That bugged me no end when I was looking at the data.

[cflame1]

If you're staying in the VPAP family... try for a VPAP Auto... would help the aerophagia potentially.

[Moondawg]

I do so feel your pain. Seems like the time from the first sleep study to the time you finally receive a 'machine' is very disturbing. Frankly, I've done quite a lot in my journey on this earth, and have never seen a more convolulted process as this. The people who really suffer are those that can not advocate for themselves.

[SleepDepraved2]

The good news is the pulmonologist's office called yesterday to say they were adjust the pressure on my machine to 19 and 15. Getting the DME to do it was a whole 'nother thing. They had the prescription within minutes of my hearing about it. I called and asked what I was to do to get the adjustment. They told me the RT would call me. This was in the morning. I heard nothing all day.

Finally, today I called and the receptionist said she didn't know what the RT was planning on doing, but she would give him a message for me. He called me back and asked me what I was calling about. He knew NOTHING about the prescription to adjust my machine. So I asked him what the new pressures were and maybe I could just adjust it myself. He said he didn't know how I could manage that without a manometer. I wanted to tell him that I had already seen the clinician's menu and knew how to get to it, so his services would not be required, but I figure I could at least let the guy earn his paycheck.

I ended up driving up there after talking to him, just because otherwise he didn't know if he could get to my machine until the end of the week. I told him I was really tired of being pumped up like a bike tire every night. Then he remembered why I wanted the pressure change and let me come up and get it done today.

So, hopefully tonight I will be having a nice long refreshing sleep without any aerophagia. Keep your fingers crossed!

The pulmonologist also wants me to have a blood draw to look at my iron levels as well as a CBC because of my RLS.

[LSAT]

The good news is the pulmonologist's office called yesterday to say they were adjust the pressure on my machine to 19 and 15. Getting the DME to do it was a whole 'nother thing. They had the prescription within minutes of my hearing about it. I called and asked what I was to do to get the adjustment. They told me the RT would call me. This was in the morning. I heard nothing all day.

Finally, today I called and the receptionist said she didn't know what the RT was planning on doing, but she would give him a message for me. He called me back and asked me what I was calling about. He knew NOTHING about the prescription to adjust my machine. So I asked him what the new pressures were and maybe I could just adjust it myself. He said he didn't know how I could manage that without a manometer. I wanted to tell him that I had already seen the clinician's menu and knew how to get to it, so his services would not be required, but I figure I could at least let the guy earn his paycheck.

I ended up driving up there after talking to him, just because otherwise he didn't know if he could get to my machine until the end of the week. I told him I was really tired of being pumped up like a bike tire every night. Then he remembered why I wanted the pressure change and let me come up and get it done today.

So, hopefully tonight I will be having a nice long refreshing sleep without any aerophagia. Keep your fingers crossed!

The pulmonologist also wants me to have a blood draw to look at my iron levels as well as a CBC because of my RLS.

Did the RT use a manometer to make the adjustment???

[Tino2You]

SD2,
I admire your perseverance and patience. I would have tossed a few people on your list a "your number one" sign and been on my merry way. Your way was much more adult and I hope rewarding.

Keep the faith!
-tino

[lliann]

[quote="SleepDepraved2"]I've had my machine for almost a week now. This sleep apnea journey has been plagued by many delays:

Incredible!! I am still wondering also how my dr let me continue with severe sleep apnea and never mentioned an alternative machine (in 6 years!!!)when I obviously couldn't do cpap. I have had to be outright pushy. Like when my aerophagia showed up and I was told to lower the pressure...oh but doctor just got back from vacation and he's booked. I walked in and said could he take 5 seconds to write the script so I can continue my therapy(next door-same building is the sleep lab)? They did. I also confused the dme people when I got my machine one place and my mask another (the first place didn't have a mask I could bond with) How dare I?

I am not sure where I am going with this other than when it comes to my health, I can choose to be just as annoying as they can. <g>

You have been a saint and have done so well. And read and found all the little tips and tricks here.

When I also said I wanted a machine that provided data that I could see (got that idea from here), they acted like they never heard of such a thing..didn't even know it was possible. I believe that may be why I didn't get a brick. I was sounding like I knew what I was doing. :fooled them. LOL!:

There was one guy at the sleep place. Jewel of a guy and talked with me 1 1/2 hours because he knew I had been at this a long time with no success. he was the one that said some success is better than no success at all. Thats when I decided if I leak a little, burp a little, scare the cats a little, it was better than nothing at all. before I thought it had to be perfection. Now I am happy for progress. And a good attitude and the ability to think outside their little box they would put me into.

You are doing great, 2 threepio<g>

[archangle]

The "professionals" are always acting concerned about patients adjusting their own pressure.

Sounds like we should be concerned about letting the "professionals" adjust CPAP machines.

[SleepDepraved2]

I slept pretty well last night without nearly as much aerophagia, so I am happy with the decreased pressure. I did wake up to burp once or twice. And my AHI was still under 1, so it looks like I really did not need 22 and 17. Hopefully, things will continue to improve!

[SleepDepraved2]

Did the RT use a manometer to make the adjustment???

No, he came to the lobby and said, "I'll just take this in the back and get it set up." I was not allowed to see the arcane process of manometry to adjust my machine.