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Caught Between DME, Doctor and Sleep Lab and Nobody Stepping Up
from a frustrated new user -- any advice would be greatly appreciated: "I had my doctor's appointment today and although I thought I would get things straightened out, I am now much more confused and frustrated than ever. I don't want to burden you any more but I really do need advice. To remind you, I have been having trouble sleeping, getting up every hour or so to use the restroom. This has been going on for 2 week (and before that about 4 weeks of getting up every 2 hours to use the restroom). My DME has been reluctant to do anything to help me after changing my mask twice and getting past the first 30 days of my having the cpap machine in possession. At my doctor's visit today, I found out that my doctor does not want to take any more responsibility for my problems with using the cpap machine, as she referred me back to the DME or the sleep clinic. It seems that the doctor, the DME and the sleep clinic are giving me the impression that they have done their parts in regards to getting me on the cpap machine. For example, none wants to read the data card in the machine to see what going on with my sleep problems. The doctor says the DME is suppose to read it. The DME says the doctor is suppose to read it. The sleep clinic says the DME is suppose to read it. My insurance company has customer service agents who don't understand the problem, at all, and make it difficult for me to get past them to someone who does. (I don't have the software or know how to read it.) Meanwhile, I am not getting much sleep and I am feeling worse that before I started cpap therapy. I know that I could die if I stop using the machine and I just feel so bad about no sleep well and about being in this situation where none of the three I am having problems with care about my health enough to do more to help me. They have made their money off my sleep apnea and its just not practical for them to invest any more time in me, I guess. YET, they have control of my cpap machine/supplies. Is this what the forum participants mean when they refer to being on your own and having to take charge of your own therapy? This is such a mess! It seems that people either do well adjusting to cpap therapy (eventually), or, people have problems with it and have to work their problems out themselves, I guess. I don't know what I expect from you but any advice or encouragement is very, very much appreciated, right now. This is such a nightmare! I understand now how ex-pro football player Reggie White might have died (because he was not using his cpap machine). He probably had similar problems and frustrations and just decided to take his chances."
Views: 690
Replies to This Discussion
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Permalink Reply by susan mccord on
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I agree, Mollete. Sometimes good things are happening outside our realm of understanding that are worth waiting for. 'Ya just never know when things could turn out well.....:-)
mollete said:Judy said:Why even bother to continue to follow this thread?
That's what I said, but on the other hand, I also said I'd read the card, so I may as well follow thru lest people think that mollete P&Ms.
mollete
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Permalink Reply by sleepycarol on
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I agree -- Christmas sales get earlier and earlier every year. I remember a time when holidays followed a sequence that made sense. Sales didn't go on sale until the previous holiday was over. That meant that Christmas sales started after Thanksgiving, Thanksgiving after Halloween, Halloween after Labor Day, and so forth. You didn't see much holiday stuff for sale until then. Now they have Christmas stuff out in September and then it is down hill from there.
Has Encore Pro 2 come out? Does it work with the System One unit?
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Permalink Reply by Judy on
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Ha! You talk a good story, SleepyCarol, but it "ain't" even quite Thanksgiving yet, and here you are wishing for Christmas - or maybe the Easter Bunny.
sleepycarol said:
Has Encore Pro 2 come out? Does it work with the System One unit?
Or, maybe I misunderstood and it is the tooth fairy you are looking for a visit from??
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LOL!, Mollete! I'd be takin' a slingshot to that owl if that's all he has to offer you. Maybe he works for the U.S. Postal Service--they bring me nothing but crap all the time!!!!!!!
McCord :-D
mollete said:Well, the only stuff the owl brought this morning was a bunch of heavily Christmas-oriented sales circulars.
I think it's still too early for that.
I wonder if this person has a "card" or a "key".
mollete
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The tooth fairy IS DEFINITELY involved in providing transportation for all things CPAP. I have it on good authority!!!!!!!
(I have now officially gone 'round the bend, so feel free to totally ignore any offerings I have for the next 45 minutes or so!!!) LMAO
Judy said:Ha! You talk a good story, SleepyCarol, but it "ain't" even quite Thanksgiving yet, and here you are wishing for Christmas - or maybe the Easter Bunny.
sleepycarol said:
Has Encore Pro 2 come out? Does it work with the System One unit?
Or, maybe I misunderstood and it is the tooth fairy you are looking for a visit from??
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Duh!! What was I thinking Judy!!!!
Is restless grandkids on the list of sleep disorders? Sky spent the night and she was so restless last night I feel like I have been ran over. She always sleeps with me and usually is pretty good. Decided at 8:30 she was tired and after I made her take a shower she got her second wind -- go figure!! Then when she finally went to sleep around 11 or so, she tossed and turned and kicked all night long. She has a cold and that didn't help things.
Yep, restless grandkids should be on the list of sleep disorders!! LOL
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Permalink Reply by Mary Z on
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Kevin, thanks for detailing your routine, there are some thing I can try from your list.
Mary Zimlich
Kevin Sargent said:My sleep
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Permalink Reply by RockRpsgt on
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Letting children sleep with you promotes bad habits for them.
sleepycarol said:Duh!! What was I thinking Judy!!!!
Is restless grandkids on the list of sleep disorders? Sky spent the night and she was so restless last night I feel like I have been ran over. She always sleeps with me and usually is pretty good. Decided at 8:30 she was tired and after I made her take a shower she got her second wind -- go figure!! Then when she finally went to sleep around 11 or so, she tossed and turned and kicked all night long. She has a cold and that didn't help things.
Yep, restless grandkids should be on the list of sleep disorders!! LOL
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I know I know Rock!!!
Since I don't have the kids every night I let them get by with it. Part of the time I make them sleep on the couch, but Sky didn't feel good last night and she has a tendancy to get up in the night and roam the house. That makes me nervous. At their house there are two bedrooms and a little alcove leading to the doorways that has an extra door. My daughter keeps their door open but shuts Sky's door (doesn't lock it) and then shuts and locks the alcove door so that she can't wander at night. My daughter is a sound sleeper and one night Sky got up and ended up climbing on top of the refrig and got a paring knife (where my daughter kept them so they would be out of reach) and Sky used the knife opening up everything in the refrig. Everything out of the refrig was scattered all over the front of the house. It is a wonder she didn't get cut. Next morning daughter found her asleep on the couch. My oldest son sleepwalks and she is unsure if the wandering at night is sleepwalking or if she wakes up and wanders. If she sleeps with me she has to climb over me to get up and I am a light sleeper so it wakes me up.
Better to be safe than sorry I figure.
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Hey, Carol, have you ever tried the old trick of putting her under the top sheet on her side of the bed, and you sleeping on top of the top sheet. 'Specially if you put a rolled up blanket in between you, it keeps the child from spinning around and kicking you like they do. At least it slows 'em down!!
Worked for me when I had to sleep in the same bed with my kids/grandkids. Which wasn't very often 'cause I never let them sleep with me unless we were traveling and had no choice.
sleepycarol said:Duh!! What was I thinking Judy!!!!
Is restless grandkids on the list of sleep disorders? Sky spent the night and she was so restless last night I feel like I have been ran over. She always sleeps with me and usually is pretty good. Decided at 8:30 she was tired and after I made her take a shower she got her second wind -- go figure!! Then when she finally went to sleep around 11 or so, she tossed and turned and kicked all night long. She has a cold and that didn't help things.
Yep, restless grandkids should be on the list of sleep disorders!! LOL
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Omigosh, that's another issue entirely. I can't believe that baby didn't hurt herself.....Angels must watch over kids with the things they're constantly doing......it's a wonder they live to grow up~~!
sleepycarol said:I know I know Rock!!!
Since I don't have the kids every night I let them get by with it. Part of the time I make them sleep on the couch, but Sky didn't feel good last night and she has a tendancy to get up in the night and roam the house. That makes me nervous. At their house there are two bedrooms and a little alcove leading to the doorways that has an extra door. My daughter keeps their door open but shuts Sky's door (doesn't lock it) and then shuts and locks the alcove door so that she can't wander at night. My daughter is a sound sleeper and one night Sky got up and ended up climbing on top of the refrig and got a paring knife (where my daughter kept them so they would be out of reach) and Sky used the knife opening up everything in the refrig. Everything out of the refrig was scattered all over the front of the house. It is a wonder she didn't get cut. Next morning daughter found her asleep on the couch. My oldest son sleepwalks and she is unsure if the wandering at night is sleepwalking or if she wakes up and wanders. If she sleeps with me she has to climb over me to get up and I am a light sleeper so it wakes me up.
Better to be safe than sorry I figure.
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Part of Kylie's problem after her mom and I split up was that we let her sleep with us. It is a common mistake made by single parents I believe. It was a habit that we had trouble breaking until she was nearly 6. Soon after all of her other sleep problems began to emerge. It is a tough call as children are so snuggly.
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