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Still losing Sleep
#1
So, I joined this board a month ago and I'm finally scheduled for my Titration study. The approval came through on the 21st, and yet until they had the paperwork in hand they wouldn't make the appt. I called yesterday and finally got an Appt for June 15th.
Then she tells me it's another two weeks before the interpretation comes back and they can order my machine.
I'm so frustrated at this point. I saw the dr. for the first time on Nov. 11th, 2013. It has taken over 6 months to get to this point. I've been tired for much longer.
Two months ago, I was put on oxygen for sleeping because my levels were so low at night. The oxygen doesn't help that much. Not even sure what it's really for. If I stop breathing then I'm not breathing the oxygen either.

I just can't wait to get this done and taken care of. Once my titration study is done, I am switching Drs. I've been lied to and put off for way too long.

Wish I had come here first. Then at least I would have known more of what to ask. All I really remember was that he said I had over 20 episodes per hour in the early stages of sleep, but more than 70/hour during REM. I don't even know what kind of episodes they were. He didn't even mention the oxygen part. I learned of it when I was checking out with reception. He had told me it went low, but didn't tell me I'd be put on oxygen until I could get a machine. When I talked to the girl yesterday, she said I may have to use the oxygen with the machine. I thought it was just to get me through.

I'm so lost, confused, frustrated, and tired. Sorry for the rant. Thank you for all the wonderful information on here though.
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#2
(05-30-2014, 10:06 PM)butterflyksses Wrote: So, I joined this board a month ago and I'm finally scheduled for my Titration study. The approval came through on the 21st, and yet until they had the paperwork in hand they wouldn't make the appt. I called yesterday and finally got an Appt for June 15th.
Then she tells me it's another two weeks before the interpretation comes back and they can order my machine.
I'm so frustrated at this point. I saw the dr. for the first time on Nov. 11th, 2013. It has taken over 6 months to get to this point. I've been tired for much longer.
Two months ago, I was put on oxygen for sleeping because my levels were so low at night. The oxygen doesn't help that much. Not even sure what it's really for. If I stop breathing then I'm not breathing the oxygen either.

I just can't wait to get this done and taken care of. Once my titration study is done, I am switching Drs. I've been lied to and put off for way too long.

Wish I had come here first. Then at least I would have known more of what to ask. All I really remember was that he said I had over 20 episodes per hour in the early stages of sleep, but more than 70/hour during REM. I don't even know what kind of episodes they were. He didn't even mention the oxygen part. I learned of it when I was checking out with reception. He had told me it went low, but didn't tell me I'd be put on oxygen until I could get a machine. When I talked to the girl yesterday, she said I may have to use the oxygen with the machine. I thought it was just to get me through.

I'm so lost, confused, frustrated, and tired. Sorry for the rant. Thank you for all the wonderful information on here though.

Hi Butterflyksses. Your story sounds a lot like mine, except they never put me on oxygen while I was waiting. I was so ready for starting with the machine I cried in the middle of the DME's building when I was going to have to wait another week before I could get my equipment. (You can read about it in the Comedy of Errors or How I got my AutoSet thread). I know it's hard to wait. Use this time to read everything you can about sleep apnea and XPAP therapy so you will be an informed consumer during the next steps. And if you haven't already, call your sleep lab and let them know that if there are ever any cancellations you are willing to come at a moment's notice. I had to postpone my first appointment because of extreme congestion from allergies/cold. I only hope someone else got to use "my" bed that night.

Get the rest you can and hold onto the knowledge that it will get better once you finish jumping through all the hoops set in front of you. Grin
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#3
Wow that is a long wait. I put off going to the doctor for quite awhile then got study set up for 1 month away, then had such a bad cold I couldn't do it. So they rescheduled, another month away. All this time I was toast and knew I had sleep apnea, couldn't wait to get going. After the Monday night test I was supposed to get my results in a week. On Friday I drove past a pick-up truck rolled on the interstate and knew I was next. So I called the Dr. office and explained that I needed my results she looked it up and said "do you have a sleep apnea machine" I said no and she said "well you need one" well that's why I'm calling you I need to get this going. So by the next week I got my machine and problem solved but it was the longest (most dangerous) few months of my life.
I hope you get everything taken care of ( if I knew then what I know now I would have bought a used machine and figured it out myself)
Good luck,
Doc J
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#4
butterflyksses. until you get your CPAP, try and prop your head up as much as possible with pillows or at worst try to sleep on your side. I can see why your going to change Drs, good luck with your results and keep us updated.
It's fine to rant, just stay positive that your treatment will make you feel better when you finally get your CPAP.
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#5
I've been waiting for my new cpcp for 2 months from the VA. When I went in and they placed the order they said it would be two weeks. I called last Friday and the office said the cpap had been released from the supply house and was going to be mailed. I haven't gotten it, nor has the outside sleep apnea outfit that is supposed to set it up, contacted me. I don't know where it is, nor do I have contact info for the provider, it's very frustrating and as I type this I am tired and have another hell of a headache, I'm going over to the VA in person Monday.
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#6
There is one advantage to having been made to wait so long......that you have time to learn a lot on the board before you are fitted for masks, machines, etc.

I on the other hand had everything move quite quickly and hadn't any ideas of what to ask for as I did not find this group until after i was given my equipment and I can assure you I regretted that immediately, once I had learned more.

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#7
Thank you everyone for the support.

I am a side sleeper, so not sure that helps. I've tried sleeping with my head propped up, but normally sometime during the night I end up moving pillows. Sometimes I even push the oxygen off of my face. Sad.

I never thought this process would take this long. I often hear around here about people who were so bad they put them on a machine and did a split study. The office I chose doesn't seem to do split studies at all. Then my ENT told me she uses a company that offers at home testing and is a split test. She couldn't believe this was taking so long either. She was afraid she wouldn't be able to get it approved to start over though. I started seeing her around the same time. My primary referred me to both back in Oct. but for different issues. I only found out last month that she worked with sleep apnea patients.

I feel a little better knowing I'm not the only one whose gone through this. And yes, I have had time to read up on things, so will be a little better prepared when I go in the next time. Thank you all again for your help and support.
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#8
Butterflyksses, stay positive and hang in there. Just keep thinking about how good you will be feeling down the track once you get sorted and adjusted to your machine and mask..
The very best of luck to you.
Sleep Tight...
Gabby
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