"please keep me updated about oximeters "
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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 seamless on
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I agree with Banyon. Do you have a personal care physician who cares about your health holistically? (If not, I'd start looking for one.) It's possible the nighttime bathroom breaks are due to something other than apnea. If you can't switch DMEs, is there a RT at the current DME that might be willing to help? As a few others have said, it's time to doctor shop.
If I were in your situation I'd frankly be hunting down software so that I'd KNOW whether I was getting effective treatment and could approach the medical folks intelligently with that knowledge if I was not. That's me--but someone really needs to be reading the data. In my case setting #1 from the titration study was not effective at home. How would anyone know unless someone looks at the ongoing AHI?
Does the machine have a display, at least, that includes AHI?
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Permalink Reply by RockRpsgt on
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I believe that you guys are doing a great job in keeping this going.
mollete said:Banyon said:
Mike, It seems strange that you posted this and not the patient. What's going on? Can we get some more details about machine, mask, settings?
Hmmm, good point. It's kinda tough keeping this thing going without any feedback.
Yo, Person With The Problem! Are you there (here)?
mollete
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Permalink Reply by Robert Couchman on
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Well, I tell you I "been there done that" and I feel for you! I'm sorry to say but this is a matter where you are gonna HAVE to change doctors! I know that can be hard, and you may have to go to several before you find one good doctor but its fixing to get one heck of a lot worse! so you need to work fast, find one who will listen who you feel comfortable talking to, and who will give you an appointment now not next year. I hope this helps. I will be praying for you!
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Who would we send them to? Are we just supposed to write Mollette on an envelope?
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Permalink Reply by susan mccord on
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Wow, Mollete, now THAT'S a VERY effective way to build someone's confidence and trust.......NOT!!!! You're the person who offered to help--everyone on here has encouraged this person to allow you to try 'cause we all know how knowledgeable you are.
HOWEVER, he or she doesn't have to do it on YOUR schedule. Helping is helping--there are no rules about when that "should" happen. Nor should it be dictated to someone who obviously doesn't feel safe enough on SleepGuide yet to ID him/her self.
Before you go ballistic on me for saying all this, please recall that I'm one of the people who encouraged this anonymous patient to let YOU help, because I believe in your ability to do so.
Just relax your control requirements a bit, and give the patient a chance to breathe and decide.
If you still want to crucify me for daring to say something you don't want to hear, help yourself. But I still believe you can help this person if and WHEN they ask you to do so.
Susan McCord You can find me on SleepGuide!!!
mollete said:Rock Hinkle said:I believe that you guys are doing a great job in keeping this going
Well, unless this person shows up and starts "discussing" on this "discussion forum" then mollete is outta here. She don't feel like talking to the %#*&!g wall. If this person wants their %#*&!g card read, then send me the %#*&!g card and I'LL read it. If they just want to P&M about "the system", then try jerryspringer.com or, as previously noted, get a whole new treatment team, there's plenty of 'em out there.
mollete
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Permalink Reply by Saz RPSGT on
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Will a forever stamp work, or will it have to be a prepaid international flat rate envelope?
mollete said:Rock Hinkle said:Who would we send them to? Are we just supposed to write Mollette on an envelope?
Don't be silly. You'll need to put a stamp on the envelope.
mollete
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I thought she would get it the same way santa, the easter bunny, or the tooth fairy get their mail.
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Permalink Reply by Jan on
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send it with an owl ;-)
Rock Hinkle said:I thought she would get it the same way santa, the easter bunny, or the tooth fairy get their mail.
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The people you have probably only know how to cure a symptom of the main problem. Their solution allows you to breath at night with sleep apnea but does not cure anything. You need to take responsibility to find the cure for the sleep apnea. Most medical professionals today are only treating symptoms. You need to learn the root cause of the problem. Is it caused by another medical condition, weight, sugar, allergies, reflux, incompatible food mixtures, acidic vs. alkaline food diet or other problems? The CPAP should keep you alive but the quality of your life will only improve if you find and eliminate the cause of the sleep apnea. The CPAP people will not do this. Remember it probably took years to create this condition so it may take years to correct this condition. The information is out there but do not count on medical professionals to provide it to you because they just don't know. You need to let your real education start now and listen to the people who have gotten over sleep apnea. I am not one of those people yet but am progressing in that direction.
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The ONLY cure for sleep apnea is a tracheotomy. All else is just therapy to treat it.
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Dumbledorf does not like it when we misuse the owlmail :-)
Jan said:send it with an owl ;-)
Rock Hinkle said:I thought she would get it the same way santa, the easter bunny, or the tooth fairy get their mail.
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A 100% healthy lifestyle is the best prevention for Apnea. What about aging being a predisposing factor to apnea? How do you suppose to turn back the clock? To date i only know of 2 people to that have beat apnea. One of those people is Henning a member here. He had a rare form of apnea that he was able to beat through surgeries and persistence. The other was my first pt ever in sleep. Over a 1 year period he lost 200lbs due to beriatric surgery.
For most of us I believe the initial cause is that first 10% increase in body weight. This weight gain increases many co-morbidities such as apnea by 6 fold. This small catalyst might give someone a light, or what is considered healthy apnea (AHI<5). The arousals caused by the OSA will cause increases in serotonin production to depletion. This elevates cortisol, and reduces growth hormone while at the same time causing a dysfunction to the production of the hormone leptin.
http://www.vivo.colostate.edu/hbooks/pathphys/endocrine/bodyweight/...
By not producing enough leptin there is nothing to tell our brain that we are not hungry anymore. Due to a lack of serotonin and leptin stimulation we crave more carbohydrates. This in turn causes us to add 10% more to our body weight. This increases many co-morbidities such as apnea by 6 fold………………etc………..etc. A little weight gain only adds to our already inadequate oral anatomies. This combined with progressive oxygen desaturations (hypoxic)that effect a gene variant called peroxisome proliferator activated receptor gamma ( PPARG) a key ingredient to the secrets of glucose.
http://www.google.com/search?hl=en&rls=com.microsoft:en-US&...(+PPAR)&spell=1
I mean at this point I am trying to figure the cause out as much as anyone. The physiology of sleep causes us to lose ALL muscle tone in our bodies. This is progressive through stage REM where we are paralyzed. This being for our own safety though. Sounds like evolutionary suicide to me. I would not even know where to begin with the original cause of apnea. No matter how I look at I come back to same question.
Was It The Chicken, Or The Egg?
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