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Coordination of care and follow-up
Hello,
I was diagnosed with sleep apnea well over a year ago.
I am frustrated and confused because there has been absolutely no follow-up check-ups or check-ins since my initial sleep study way back when, I'm having a problem, and I don't know where to turn or how to deal with it.
The problem was and is that there is absolutely no coordination nor communication between the sleep lab that diagnosed my sleep apnea, my doctor who prescribed the CPAP machine, the DME supplier who provided the machine, and/or my insurance company.
My doctor is a general practitioner who has no experience nor knowledge in dealing with sleep apnea. She set an arbitrary number for the machine (high) and there was no follow-up by anybody to see if the machine was set properly, and if I was responding adequately to the treatment, etc.
I'm now on my second machine. I could not adjust to the first machine. I tried for months, but I would knock the mask off my face in my sleep every night.
I finally gave up in frustration and I assumed that was the end of trying to resolve my sleep apnea.
Then some months later I read about APAP machines and thought, "hmmm, maybe if the machine isn't forcing air down my throat constantly and actually adjusts to my breathing and needs, I can adjust to the machine."
So I asked my doctor if she could prescribe an APAP machine. Finally, after endless months of up and back between my doctor, the insurance company, and the DME supplier I got a Remstar Auto A-Flex M series.
I have adjusted fairly well to this machine and I am usually able to keep the mask on.
The problem is that I see little or no improvement after some months of using the machine.
I still wake up tired, groggy, headachey, etc. and I have continuing, recurring energy problems. I'm very frustrated and disappointed after all the stories I've heard of people experiencing tremendously positive results with the use of these machines.
So, my question is:
Is it normal to have some sort of follow-up or check-in or monitoring with this sort of medical condition and this type of equipment?
If so, who should I be talking to about this?
Should I ask my doctor to prescribe another night in the sleep lab? And if so, how do I or my doctor extract the necessary information about how to set the machine properly and/or what else needs to be done to relieve my symptoms?
Will insurance normally pay for a follow-up in the sleep lab?
Or is there some other way to get some follow-up and coordination and feedback going?
Thank you !
I was diagnosed with sleep apnea well over a year ago.
I am frustrated and confused because there has been absolutely no follow-up check-ups or check-ins since my initial sleep study way back when, I'm having a problem, and I don't know where to turn or how to deal with it.
The problem was and is that there is absolutely no coordination nor communication between the sleep lab that diagnosed my sleep apnea, my doctor who prescribed the CPAP machine, the DME supplier who provided the machine, and/or my insurance company.
My doctor is a general practitioner who has no experience nor knowledge in dealing with sleep apnea. She set an arbitrary number for the machine (high) and there was no follow-up by anybody to see if the machine was set properly, and if I was responding adequately to the treatment, etc.
I'm now on my second machine. I could not adjust to the first machine. I tried for months, but I would knock the mask off my face in my sleep every night.
I finally gave up in frustration and I assumed that was the end of trying to resolve my sleep apnea.
Then some months later I read about APAP machines and thought, "hmmm, maybe if the machine isn't forcing air down my throat constantly and actually adjusts to my breathing and needs, I can adjust to the machine."
So I asked my doctor if she could prescribe an APAP machine. Finally, after endless months of up and back between my doctor, the insurance company, and the DME supplier I got a Remstar Auto A-Flex M series.
I have adjusted fairly well to this machine and I am usually able to keep the mask on.
The problem is that I see little or no improvement after some months of using the machine.
I still wake up tired, groggy, headachey, etc. and I have continuing, recurring energy problems. I'm very frustrated and disappointed after all the stories I've heard of people experiencing tremendously positive results with the use of these machines.
So, my question is:
Is it normal to have some sort of follow-up or check-in or monitoring with this sort of medical condition and this type of equipment?
If so, who should I be talking to about this?
Should I ask my doctor to prescribe another night in the sleep lab? And if so, how do I or my doctor extract the necessary information about how to set the machine properly and/or what else needs to be done to relieve my symptoms?
Will insurance normally pay for a follow-up in the sleep lab?
Or is there some other way to get some follow-up and coordination and feedback going?
Thank you !
Views: 66
Replies to This Discussion
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Permalink Reply by Judy on
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Welcome to the world of sleep medicine, the latest "cash cow" sub-specialty. What you've experienced isn't all that uncommon. And I'm sorry to read of all you've gone thru.
LET ME SAY LOUD AND CLEAR "WE" ARE PROUD OF YOU FOR STICKING W/CPAP AND MASK ALL THIS WHILE UNDER THESE CIRCUMSTANCES!!!!!! You are quite amazing. Most would have tossed in the towel by now. You must have the patience of Job!
First off, I would send a written request to the sleep lab for a copy of 1] the doctor's dictated results of any and all of your in-lab sleep studies (1-2 pages each), 2] the full scored data summary report w/condensed graphs, sometimes called the full discovery report (5+ pages each) from any and all of your in-lab sleep studies and 3] your equipment order(s), the original and the APAP but most assuredly the APAP. They are part of your medical records and assuming you are in the USA you have a LEGAL RIGHT to these copies under HIPAA.
I assume that you have been using your APAP w/the data card inserted all this while? If so, pull the card, go to the DME provider and request that he do a full download all ALL of the data and give you a printout. They've made a good profit off you, let them provide you w/the data download. If the card has NOT been inserted in your APAP, do so NOW and get a week's worth of data (a full 7 nights) before taking it into your DME provider.
Call your insurance company and ask them what local DME CPAP providers they are contracted with. Hopefully, you will have the option of more than just this one and can shop your options and find a better DME provider to do your future business with. Also ask them how often they will pay for a mask and headgear. And ask them about any annual deductibles since the first of the year is fast approaching. You may want to delay another in-lab study and try to find your correct pressure w/your APAP until later in the new year when you've met your annual deductible.
How long have you had this mask that you are using? Is it the only mask you've tried? Are you having any problems with it? If so can you describe what kind of problems?
Your pressure setting may be too high or too low. Since it has been more than a year since your in-lab sleep study(ies) your insurance should pay for another, especially since you are having so much trouble and that APAP of yours is capable of providing the PROOF that you are still having serious problems. You may even need an entirely different kind of xPAP, a bi-level or an even more sophisticated model.
BUT - I sure as the devil would NOT go back to the same sleep lab!!!! When you call your insurance company about your local DME CPAP provider options also ask them what local sleep doctors and sleep labs they are contracted with. You increase your odds of finding a good sleep lab if you use an accredited sleep lab w/an accredited sleep doctor on staff.
You've encountered a lousy sleep lab - now you have some idea of what to look for. I'd visit each of the sleep labs your insurance works with. I'd ask about accredidation of both lab and sleep doctor and ask to see the certificates of accrediation. I'd ask if you have a consultation w/their sleep doctor before and after each sleep study. I'd ask if an RPSGT does both their sleep studies AND their scoring or if trainees do the sleep studies. (Not that trainees are bad, one of our best sleep techs here will be taking his certification test in a month or so - Rock Hinkle. I'd be thrilled if Rock Hinkle could do my sleep evaluation or titration study!!!). I'd ask to see the sleep rooms. I'd pay close attention to the location, doesn't have to be in the high rent district but you also don't want it situated next to a railroad track or down in the slums!
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Permalink Reply by RockRpsgt on
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Now I am all warm and fuzzy Judy! Thank You.
James, How long have you actually been on treatment? How long have you been on the new machine? Do You know about sleep debt?
I believe that you should have had a check up at 30, and 90 days, then again at 6months. After that it just depends on the doc and what is going on.
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Permalink Reply by D. W. Conn on
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The sleep lab performed the study and sent the report to your MD for review and if nPAP titration was done it was sent to the DME. If this was a sleep only exam the sleep lab should have contacted you and the PCP asking for a convenient titration date. Following Titration study the PCP and DME should both have received a copy of the polysomnogram. 3 to 6 months out the sleep lab should have called you to see how you were doing. The DME as well should have called you.
Did the DME come to your home for a mask fit and set up? They then should have called a couple weeks later to see about your progress. They should have also left their number so you could call if the mask fit was not working out.
Sorry you had a bad experience. Feel free to send me a note with any questions about your mask or machine.
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Permalink Reply by 99 on
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there should be not only the followups suggested but also telephone help for inbetween times for emergency backup
D. W. Conn said:The sleep lab performed the study and sent the report to your MD for review and if nPAP titration was done it was sent to the DME. If this was a sleep only exam the sleep lab should have contacted you and the PCP asking for a convenient titration date. Following Titration study the PCP and DME should both have received a copy of the polysomnogram. 3 to 6 months out the sleep lab should have called you to see how you were doing. The DME as well should have called you.
Did the DME come to your home for a mask fit and set up? They then should have called a couple weeks later to see about your progress. They should have also left their number so you could call if the mask fit was not working out.
Sorry you had a bad experience. Feel free to send me a note with any questions about your mask or machine.
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Permalink Reply by Mary Z on
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James, I would recommend that if you can get a consult from your PCP to a sleep medicine specialist, do that. The sleep Doc (hope there are some available to you) can decide if you need a new sleep study, they will probably ask for a Release of Information for the first sleep study, or may want to do one themselves. You then can work with the sleep doctor and get your settings straight. If that is not an option I would try again to work with the PCP and the DME- explain the problems you are having and tell them you need help. I always suggest that you let the doctor do the record requesting with a release of information form. That usually works quickly for me, where it might take six weeks to get the records myself.
Good luck and again, please keep us posted.
Mary Z.
Like Judy said- I really admire your dediication in the face of poor results and the lack of any effective help, James
PLEASE keep us posted as we will all be interested and hopeful that you get the help you need.weeks
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Thank you very much to everyone who has responded. I'm going to make a brief, general response to all the comments and suggestions.
First, I"m very appreciative of all the consideration and information.provided. It's going to take a while to absorb and understand it all. Since this is quite overwhelming, I'm thinking that the best place to start is with Mary Z's suggestion that I consult with a sleep therapy specialist since I haven't yet seen one.
As I mentioned, I never once had a consultation with a doctor, nor anyone else for that matter, before, during or after the sleep study.
I am infuriated, in light of the information provided here, by the utter lack of consultation, support, and follow-up. It's outrageous.
I did get a very quick, cursory set-up of the machine and the mask by the tech who delivered it, but absolutely no follow-up by the DME provider. I do have a telephone number for support, which I finally called yesterday because the Remstar machine is defective. (The machine is turning itself on and off, and sometimes shutting down completely.) The tech is now overdue for an appointment to exchange the machine.
Thank you again. I'm going to speak to my PCP about a referral to a sleep specialist. My PCP Is a friend, and totally supportive. She's done the best she could under the circumstances, she's just not at all experienced with this field.
James
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A little more information:
The one and only mask I've had is a full face Fisher Paykel FlexiFit 431.
I've had considerable, recurring problems with leakage. I haven't yet figured out how to adjust it properly.
Sometimes I have no leakage at all.
Sometimes I start with no leakage, and have problems later.
Sometimes the opposite happens, I start with leakage that I can't resolve, and I wake up with the mask properly seated.
I can't figure out why it sometimes leaks and sometimes doesn't, it makes no sense to me.
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Some more info:
The APAP machine does have a data card, so I'll be able to get the information.
In response to Rock Hinkle's questions;
It's probably about a year and a half since I was diagnosed and got the first machine. I used that machine for perhaps 4-5 months unsuccessfully before giving up.
I received my current machine on 10/21 so it's been around 2 months now.
By "sleep debt" I assume you mean the consequences of recurrent, consistent lack of adequate sleep?
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Permalink Reply by Tim on
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I got some follow up with my sleep specialist when I got my first CPA about 14 years ago. When I got my next CPAP about five years ago, I did not even meet the sleep specialist who wrote the prescription and I haven't had a followup by anybody.
A PA at my PCP's office did some blood tests, wrote a prescription for a sleep study, and gave me the phone number for a chain of sleep centers. The sleep center doctor(s) never see or talk to the patients. A clerk calls the patient and faxes sleep studies and prescriptions.
My PCP doesn't care that I am on CPAP, although he is aware that my sleep apnea is being treated. My dentist knows more about my sleep apnea than my PCP.
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Permalink Reply by Andy on
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Hi James,
Thanks for posting here, and for asking these questions.
Unfortunately, sleep apnea is not taken seriously by many doctors and DME providers. As you've probably figured out, from reading the responses to your post and reading other postings on this site, you really have to take charge of your treatment, do your own research as to what machines and masks might be best for you, and pressure your doctor(s) to address your questions and advise and help you.
The medical system that we have available to us is not designed to handle this sort of long-term care, nor is it set up to handle questions an follow-ups as we need them. The medical system seems to be more suited to responding to specific health issues at the time they occur, and don't seem to be willing or able to provide proper follow-up.
And don't get me started about the health insurance companies...
So, do some research, post any and all questions here, and be prepared to be the one person involved who is going to care enough to take the necessary steps to insure that you're well treated.
By the way, I just completed my 60th night on CPAP. Search out my early posts to see what I had to do to even get this machine in my hands. Had I not taken the steps I did, I still would not have the machine!
Good luck, and keep in touch!
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Yes james sleep debt is the accumulation of lost sleep. I believe that the average apnaec is carrying about 24-30 hours of debt around with them. It is possible to work off a little and feel better however optimal energy and an efficient wake cycle depends on this debt being as low as possible. The amount of time needed to catch up on sleep veries from person to person. Some may feel an immediate recovery while others take 6 months or longer to see results. ther are alos many things that can slow down this recovery. ie Mask leaks, improper mask fitting, improper pressure setting, bad sleep hygeine. You could also have another underlying sleep disorder such as narcolepsy or PLMs that was hidden by the apnea. it took years for your sleep to get to this condition. It may take alittle time, effort, and patients on your part to get it fixed.
James Goodman said:Some more info:
The APAP machine does have a data card, so I'll be able to get the information.
In response to Rock Hinkle's questions;
It's probably about a year and a half since I was diagnosed and got the first machine. I used that machine for perhaps 4-5 months unsuccessfully before giving up.
I received my current machine on 10/21 so it's been around 2 months now.
By "sleep debt" I assume you mean the consequences of recurrent, consistent lack of adequate sleep?
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