"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: 613
Replies to This Discussion
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Permalink Reply by susan mccord on
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LOL !
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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Mollete, that may very well be the case, that they need more time. We have no way of knowing where this patient may be in terms of thought process due to sleep deprivation or other medical issues. OR I suppose it's possible that the patient may have taken our advice and is busy getting after following up on it. I'd like to think that's what's happening but (?)--we may never know.....
I agree with you, the thank you route COULD be accomplished via Mike since he's the person the patient contacted. We, here on SG, typically say thanks to the many people who try to help us. Seems only logical to me. I tend to give people the benefit of the doubt, 'specially when they're new, 'cause I remember how screwed up I was when I first came to SG.
We ALL have our troubles, our own stresses, that no one else on SG knows about.....
So, in the interest of maybe helping the patient understand how we roll around here, I'd personally like to thank you, Mollete, for offering to take the time to intervene for this person. That was very generous of you, and speaking for myself, if I'd needed that kind of assistance, your helping would have meant the world to me.
So I'm thanking you on behalf of someone who may not be able to, for whatever reason.
P.S. Between you and me, I didn't say "yada, yada, yada" to you, nor would I--just a friendly FYI !!!
Susan McCord :-)
mollete said:susan mccord said:Wow, Mollete, yada yada yada...
OK, fine. I will sit here and wait for whatever drops the card off (owl, rabbit, fairy, Old Man Who Only Delivers Stuff Once A Year), but you'd think that with about 20 different people that have taken time to offer help, you'd think that this person could come out and at least say a simple "Thank You". Or do they need "a chance to breathe and decide" for that, too?
mollete
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Permalink Reply by Mary Z on
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So Kevin, glad to hear you're moving in the direction of eliminating your sleep apnea, I'm assuming by finding out and addressing the root cause. Tell us what you're doing, please, so that we all may benefit.
Mary Zimlich
>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?
> I am not one of those people yet but am progressing in that direction.
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Permalink Reply by Henning on
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Perhaps it is much simpler here in Denmark.
We have no DME's. Whether we are diagnosed in private or in public auspices, it will be our public health-care system that gives us our equipment.
This equipment is by default a Resmed Elite S8, or equivalent, VPAP.
I cannot answer positively or negatively concerning our system.
But perhaps others can??
Henning
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Henning, sounds a lot simpler than things in the US as long as you get the support and follow up you need. They do provide you with a good machine. Thanks for the info.
Mary Zimlich
Henning said:Perhaps it is much simpler here in Denmark.
We have no DME's. Whether we are diagnosed in private or in public auspices, it will be our public health-care system that gives us our equipment.
This equipment is by default a Resmed Elite S8, or equivalent, VPAP.
I cannot answer positively or negatively concerning our system.
But perhaps others can??
Henning
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mollete,
I agree, I enjoy the support and positive feedback when I post something. At the very least you know you're heard. It would be nice to know this person is availing themselves of all the knowledge and support, even if it's through Mike again. Perhaps we're just talking to ourselves, and although the comments are always interesting that is not the point.
Mary Zimlich
http://www.sleepguide.com/forum/topics/newbie-not-yet-educated?page...
I see 5 things that could be seen as expressions of gratitude.
I don't expect them to be a McCord, but c'mon, something.
mollete
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Well, I have appreciation skills which, hopefully, make up for some I DON'T have!!!
Hey, Mollete, while you're waiting for "the card" to show up, I'd encourage you to wish for the fairy to bring it as opposed to some of the other options presented. Sometimes fairies bring $$, at least they used to bring it to me. Oh wait....that was for teeth!
(Hmmmmm, makes me wonder, now that I'm getting older, if when I'm REALLY old, if I lose my teeth......does the tooth fairy come back and bring $$ under my pillow????? Seems like he/she would.....)
Yeah, I'd definitely opt for fairy mail!!
Well sadly, here you see demonstrated one of my lesser skills.....!! lol
Susan :-)
mollete said:susan mccord said:I tend to give people the benefit of the doubt, 'specially when they're new, 'cause I remember how screwed up I was when I first came to SG.
OK, let's use you as the template for Forum Decorum.
10 minutes after someone responded to your first post, you said:
susan mccord said:Thank you so much. You're my first responder and I very much appreciate your taking the time to answer. I'm particularly comforted by your saying how long it may take to get past the fatigue. Everyone around me, not apnea patients!, seems to think I should be up and at 'em by now. I don't seem able to make them understand that I'm trying but just not there yet. You helped me great deal today, so thanks again.
-Susan :-)
http://www.sleepguide.com/forum/topics/newbie-not-yet-educated?page...
I see 5 things that could be seen as expressions of gratitude.
I don't expect them to be a McCord, but c'mon, something.
mollete
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Permalink Reply by 99 on
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those owls could not give a hoot
susan mccord said:LOL !
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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Permalink Reply by Kevin Sargent on
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My sleep apnea is mainly from weight, acid reflux, and sinus problems. When all those are under control sleep apnea is minor problem and not a severe problem like it used to be. There is a book "How to End Stomach Pain Forever" by Sherry Brescia which is down loadable as a PDF file that helps me control my weight and acid reflux. When weight and acid reflux are under control the sleep apnea is no longer severe. Going on antifungal diets during the year has also been beneficial.
For me other factors that were beneficial were:
Having the head over my bed elevated or sleeping in a recliner
B vitamins especially B12 and slow release Niacin to help minimize brain fog
A product called Restaid to help me relax and not get that freaking out feeling at night from using the CPAP.
Using the CPAP with an uninterruptable power supply also helps prevent that freaking out feeling. It is better to wake up to a beeping alarm than not being able to breathe. The CPAP will state the minimum wattage the uninterruptable power supply will have to be.
A diet high in essential oils Omega 3, 6 and Flax seed oil since my HDL cholesterol was very low
Eating vegetables for an alkaline diet
I also found out that bread was causing my nose and throat to swell making the sleep apnea worse.
Mary Zimlich said:So Kevin, glad to hear you're moving in the direction of eliminating your sleep apnea, I'm assuming by finding out and addressing the root cause. Tell us what you're doing, please, so that we all may benefit.
Mary Zimlich
>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?
> I am not one of those people yet but am progressing in that direction.
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They are, aren't they............
Rock Hinkle said:i follow these post because I find the conversation interesting.
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