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I haven't started CPAP yet - have had a bad experience all the way around starting with the place I had my sleep center and then with the DME . . . have to start over again . . .
At my sleep center, on my 1st night, I was in an office with a Murphy bed and the left side of the bed contained a cabinet which apparently held supplies because the techs came into my room, turned on the light and sorted thru the closet throughout the night to find items they needed. Also there was no air circulation and it was too warm. After the tech opened the windows, it got cooler but still warm enough to sleep without any sheet or blanket on, and still no air circulation. On the 2nd night, I was in a smaller room with a smaller bed, but there was a fan and I had time to adjust the direction and speed while waiting for the tech, so even though the bed was smaller – especially with the equipment in it – the temperature and air circulation was better and the techs didn’t need to come in and out throughout the night to find supplies. BUT what bothered me the most was such a simple thing – in both rooms, the beds had plastic covering on the mattresses – but NO top sheet ! They had only a VERY thin piece of cotton material that was laid across the TOP of the mattress. It was the same size as the length and width of the mattress so it did not go down over the sides, top, bottom of the mattress. And so as soon as you sat on it for the tech to hook you up, the material started to bunch up and then as the tech placed the equipment under the pillow, the material pulled down from the top – and then as you laid down – well, that was it – the material just shriveled up under you ! So, throughout the night, your whole body, especially your arms and legs were partly on a damp plastic mattress or tangled up in a pile of crumpled up cotton fabric. (Since I had been reading the SG forum and thought it was important to find out ASAP out my OSA, I remained with the same sleep center for the 2nd test – but I wish I had thought to take a sheet from home for my 2nd night.) Needless to say, I didn’t sleep much either night for a whole assortment of reasons.
Also I was given vastly differing info between my 1st and 2nd sleep study tests regarding my condition and then after my 2nd test, I was contacted by a receptionist and told that I was to start using CPAP - but she would not provide me with any verbal or written info about my results and said that it was not their practice that I should speak with a doctor. However, since I wouldn't start CPAP without knowing something about my condition, the doctor asked that I come in, rather than talking with me on the phone, in order to explain my sleep study results and I had to wait another 3 weeks for that appointment.
I had thought, at both my initial consultation and at the visit afterwards with the doctor, that I received very good information. However, having learned an awful lot from the SG forum, I was able to read my sleep study results at home and found that the doctor had really slanted how she represented her findings at my follow-up meeting. Ultimately, the sleep study results do strongly show that I have severe sleep apnea, BUT I do need to have another sleep center conduct a reliable and complete sleep study in order to have the correct treatment plan determined for me by competent and qualified doctors who are in the field for health, rather than profit, motives. Someone else who I know who went to this sleep center got the impression that they were trying to fill some statistical quotas with their patients rather than providing a health service (and they also refused to provide her with her results). And I got the feeling that they had set up a unit within the hospital to make money in a niche market and to have a way to bill between the hospital, doctors and the DME.
However, after meeting with the doctor, since I think the diagnosis and mode of treatment is correct, only the "level" of treatment is in particular question and so I have felt comfortable getting started with CPAP even before going to a more competent sleep center for another study given how very much I have learned on SG and because the S8 Auto II will provide efficacy data including: pressure, leak rate, apnea / hypopnea index.
BUT - and now it only gets worse - at 1st, when I spoke with the DME that I was directed to contact, they seemed VERY helpful and cooperative and I wrote down everything they told me and I was SO VERY pleased that I had wound up with such a great DME after the horror stories that I had read about on SG. I was even going to post about them on SG but decided to wait until I had received my equipment to see that their excellent service followed thru with more than a phone call. But, then I got sick and had to go into the hospital and had to put off receiving my equipment for 2 weeks. And during that time, I had a chance to research the full line of ResMed equipment online and ask for recommendations from SG members.
From the notes I had taken, I realized that the DME was intending to provide me with the C-Series, the oldest CPAP machine and humidifier (combined) – and comparing that with the advice I received on SG, I knew that it is NOT a suitable machine – and that I must refuse it. - Also, SG members had provided me with info that my insurance would pay for any machine that I choose - that it was not up to the DME which machine I choose.
Given that the feature to receive efficacy data (leak rate, apnea / hypopnea index) is the critical feature to me, I called my DME (with whom I had previously spoken with 2 reps and a supervisor and with whom I thought I had an EXCELLENT relationship) to ask to have my order changed to substitute the S8 AutoSet II for the C-Series CPAP and, all of a sudden, the DME wasn't so cooperative anymore. They dug in their heels and said they would not do that without a specific RX from the doctor. I knew they didn’t have the right to do that but thought it was maybe the fastest and easiest thing to do without threatening them with contacting the NY State Dept. of Health, etc. So I called my doctor's office and left a message for her to please fax them a RX to the DME to issue me a S8 AutoSet II and detailed for the receptionist why I was requesting that: efficacy data, EPR - exhalation pressure relief and Ramp (which is only optional with the C-Series).
The next day, I called my DME to reschedule my appointment and thought that rather than threaten them with the NY State Dept of Health, that I could just tell them that I knew that the insurance would cover whichever CPAP I choose and that I wanted the S8, not the C-Series - and I explained the main efficacy data feature that I wanted. The rep said alright and changed my order and we planned that I would call back at the end of the week to set up my appointment for the rep to visit with me next week.
About an hour later I thought to call my doctor's office to tell them that my doctor did not have to take the time to fax a new RX to the DME because I had talked with them and they had already changed the order to the S8. The receptionist informed me that was not so because the DME had already called my doctor and they had decided that I was not to get the newer machine. Also, the receptionist said the doctor was not in and she is very busy with many things that she does with tests and patients and that she would get back to me when she could. I mentioned that I was a patient - to which I was told that that was so but that, as the doctor was very busy, as had been explained, she would get back to me when she could.
When the doctor called me she expressed her anger at my audacity in requesting particular equipment. I remained calm and explained to her the primary reason being that the unit I wanted provided the efficacy data for the doctor that the other unit did not - to which she said she did not believe me but she would check. To the 2nd reason - EPR - she said that did not matter in any way what-so-ever; however, just before we hung up, she told me after I got started with CPAP that she was going to be switching me to Bi-Level – yet she didn’t think EPR is important ! And, as to the fact that Ramp is optional with the C-Series on the Resmed website - she said that she was sure that I was absolutely wrong - but that under the circumstances that she would approve that I get the unit that I had specified. THEN she started yelling and screaming at me about how I should use CPAP and that she had spent a lot of time in the office with me . . . I wasn't sure as to what her point was . . . When she stopped ranting and there was a silent pause, and I said: Am I supposed to say something now? To which she made some sort of a grunting sound . . . I reminded her that I had not been able to start CPAP because I had been in the hospital due to an emergency - to which she spit out: Oh, yes, I hope you will be alright.
I was mystified at the bizarre episode. And, due to all that has occurred, I did not call the DME to set up an appointment for their rep to visit with me. I am COMPLETELY through with any further association with that sleep study center and that DME.
Very fortunately for me, I had made an appointment with another sleep study center and my consultation is for this coming Monday morning. So I will wait 'til after my Monday appointment to proceed with CPAP. I am going to take my full sleep study reports to my appointment and ask the new sleep study center for their DME recommendations to contact to get equipment.
The sleep study center that I am going to on Monday was recommended by members of SG and, rather than feeling defeated, I am feeling more confident in my search for help with OSA than I have been from the very onset of this process because I have more confidence in this sleep study center – and because I have learned so much from so many on SG and, thereby, learned that, while OSA is a serious condition, it does seem manageable with compliance, tenacity and the generous, on-going support and championing of so many great folks at SG .
Thanks to All !
Renee
At my sleep center, on my 1st night, I was in an office with a Murphy bed and the left side of the bed contained a cabinet which apparently held supplies because the techs came into my room, turned on the light and sorted thru the closet throughout the night to find items they needed. Also there was no air circulation and it was too warm. After the tech opened the windows, it got cooler but still warm enough to sleep without any sheet or blanket on, and still no air circulation. On the 2nd night, I was in a smaller room with a smaller bed, but there was a fan and I had time to adjust the direction and speed while waiting for the tech, so even though the bed was smaller – especially with the equipment in it – the temperature and air circulation was better and the techs didn’t need to come in and out throughout the night to find supplies. BUT what bothered me the most was such a simple thing – in both rooms, the beds had plastic covering on the mattresses – but NO top sheet ! They had only a VERY thin piece of cotton material that was laid across the TOP of the mattress. It was the same size as the length and width of the mattress so it did not go down over the sides, top, bottom of the mattress. And so as soon as you sat on it for the tech to hook you up, the material started to bunch up and then as the tech placed the equipment under the pillow, the material pulled down from the top – and then as you laid down – well, that was it – the material just shriveled up under you ! So, throughout the night, your whole body, especially your arms and legs were partly on a damp plastic mattress or tangled up in a pile of crumpled up cotton fabric. (Since I had been reading the SG forum and thought it was important to find out ASAP out my OSA, I remained with the same sleep center for the 2nd test – but I wish I had thought to take a sheet from home for my 2nd night.) Needless to say, I didn’t sleep much either night for a whole assortment of reasons.
Also I was given vastly differing info between my 1st and 2nd sleep study tests regarding my condition and then after my 2nd test, I was contacted by a receptionist and told that I was to start using CPAP - but she would not provide me with any verbal or written info about my results and said that it was not their practice that I should speak with a doctor. However, since I wouldn't start CPAP without knowing something about my condition, the doctor asked that I come in, rather than talking with me on the phone, in order to explain my sleep study results and I had to wait another 3 weeks for that appointment.
I had thought, at both my initial consultation and at the visit afterwards with the doctor, that I received very good information. However, having learned an awful lot from the SG forum, I was able to read my sleep study results at home and found that the doctor had really slanted how she represented her findings at my follow-up meeting. Ultimately, the sleep study results do strongly show that I have severe sleep apnea, BUT I do need to have another sleep center conduct a reliable and complete sleep study in order to have the correct treatment plan determined for me by competent and qualified doctors who are in the field for health, rather than profit, motives. Someone else who I know who went to this sleep center got the impression that they were trying to fill some statistical quotas with their patients rather than providing a health service (and they also refused to provide her with her results). And I got the feeling that they had set up a unit within the hospital to make money in a niche market and to have a way to bill between the hospital, doctors and the DME.
However, after meeting with the doctor, since I think the diagnosis and mode of treatment is correct, only the "level" of treatment is in particular question and so I have felt comfortable getting started with CPAP even before going to a more competent sleep center for another study given how very much I have learned on SG and because the S8 Auto II will provide efficacy data including: pressure, leak rate, apnea / hypopnea index.
BUT - and now it only gets worse - at 1st, when I spoke with the DME that I was directed to contact, they seemed VERY helpful and cooperative and I wrote down everything they told me and I was SO VERY pleased that I had wound up with such a great DME after the horror stories that I had read about on SG. I was even going to post about them on SG but decided to wait until I had received my equipment to see that their excellent service followed thru with more than a phone call. But, then I got sick and had to go into the hospital and had to put off receiving my equipment for 2 weeks. And during that time, I had a chance to research the full line of ResMed equipment online and ask for recommendations from SG members.
From the notes I had taken, I realized that the DME was intending to provide me with the C-Series, the oldest CPAP machine and humidifier (combined) – and comparing that with the advice I received on SG, I knew that it is NOT a suitable machine – and that I must refuse it. - Also, SG members had provided me with info that my insurance would pay for any machine that I choose - that it was not up to the DME which machine I choose.
Given that the feature to receive efficacy data (leak rate, apnea / hypopnea index) is the critical feature to me, I called my DME (with whom I had previously spoken with 2 reps and a supervisor and with whom I thought I had an EXCELLENT relationship) to ask to have my order changed to substitute the S8 AutoSet II for the C-Series CPAP and, all of a sudden, the DME wasn't so cooperative anymore. They dug in their heels and said they would not do that without a specific RX from the doctor. I knew they didn’t have the right to do that but thought it was maybe the fastest and easiest thing to do without threatening them with contacting the NY State Dept. of Health, etc. So I called my doctor's office and left a message for her to please fax them a RX to the DME to issue me a S8 AutoSet II and detailed for the receptionist why I was requesting that: efficacy data, EPR - exhalation pressure relief and Ramp (which is only optional with the C-Series).
The next day, I called my DME to reschedule my appointment and thought that rather than threaten them with the NY State Dept of Health, that I could just tell them that I knew that the insurance would cover whichever CPAP I choose and that I wanted the S8, not the C-Series - and I explained the main efficacy data feature that I wanted. The rep said alright and changed my order and we planned that I would call back at the end of the week to set up my appointment for the rep to visit with me next week.
About an hour later I thought to call my doctor's office to tell them that my doctor did not have to take the time to fax a new RX to the DME because I had talked with them and they had already changed the order to the S8. The receptionist informed me that was not so because the DME had already called my doctor and they had decided that I was not to get the newer machine. Also, the receptionist said the doctor was not in and she is very busy with many things that she does with tests and patients and that she would get back to me when she could. I mentioned that I was a patient - to which I was told that that was so but that, as the doctor was very busy, as had been explained, she would get back to me when she could.
When the doctor called me she expressed her anger at my audacity in requesting particular equipment. I remained calm and explained to her the primary reason being that the unit I wanted provided the efficacy data for the doctor that the other unit did not - to which she said she did not believe me but she would check. To the 2nd reason - EPR - she said that did not matter in any way what-so-ever; however, just before we hung up, she told me after I got started with CPAP that she was going to be switching me to Bi-Level – yet she didn’t think EPR is important ! And, as to the fact that Ramp is optional with the C-Series on the Resmed website - she said that she was sure that I was absolutely wrong - but that under the circumstances that she would approve that I get the unit that I had specified. THEN she started yelling and screaming at me about how I should use CPAP and that she had spent a lot of time in the office with me . . . I wasn't sure as to what her point was . . . When she stopped ranting and there was a silent pause, and I said: Am I supposed to say something now? To which she made some sort of a grunting sound . . . I reminded her that I had not been able to start CPAP because I had been in the hospital due to an emergency - to which she spit out: Oh, yes, I hope you will be alright.
I was mystified at the bizarre episode. And, due to all that has occurred, I did not call the DME to set up an appointment for their rep to visit with me. I am COMPLETELY through with any further association with that sleep study center and that DME.
Very fortunately for me, I had made an appointment with another sleep study center and my consultation is for this coming Monday morning. So I will wait 'til after my Monday appointment to proceed with CPAP. I am going to take my full sleep study reports to my appointment and ask the new sleep study center for their DME recommendations to contact to get equipment.
The sleep study center that I am going to on Monday was recommended by members of SG and, rather than feeling defeated, I am feeling more confident in my search for help with OSA than I have been from the very onset of this process because I have more confidence in this sleep study center – and because I have learned so much from so many on SG and, thereby, learned that, while OSA is a serious condition, it does seem manageable with compliance, tenacity and the generous, on-going support and championing of so many great folks at SG .
Thanks to All !
Renee
Views: 64
Replies to This Discussion
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Permalink Reply by Renee on
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Hello Jerri Lynn ~
I very much appreciate hearing from you while you are in the midst of a similar problem yourself. Maybe if you post on SG where you reside, folks here could suggest DMEs in your area that would be better for you to work with. I had posted a prior question about equipment on SG and received the most complete and comprehensive information and advice that could possibly be provided, as well as guidance about insurance. And it was only because of the info and advice that I received on SG that I was able to know what I needed, was able to have the fortitude to make the decisions that I did and was able to persist in jousting with my health care providers.
This SG forum is comprised of a phenomenal, vibrant and caring group of people who generously offer invaluable knowledgeable advice and support to each other. I hope someone might be able to offer you suggestions re: DMEs and Sleep Study Centers in your area. And I would like to thank you for your kind thoughtfulness on my behalf.
Best,
Renee
Jerri Lynn said:Wow Renee......I empathize with you. I too had very horrible experiences with both my DME and Sleep Study Ctr. I too, am in the middle of trying to get set-up with another DME. So, So frustrating......even more stressful!
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Hey Susan ~
YEAH Susan – I say YEAH ! I am right there with you! Seems you got riled up right along with me, just how I got to feeling about all this.
As things were progressing, I couldn’t quite figure out what was going on. I am actually a really positive, cooperative person and so, at first I thought the problem was, perhaps, the receptionist at the Sleep Study Center. And the doctor did not show her true colors in person – other than representing the findings of my sleep study at my visit with her. The way she described my OSA was not borne out by the technical findings in my full sleep study report which I was able to slowly scrutinize, read and understand (only BECAUSE of all the invaluable great info that SG members post in discussions). That misrepresentation was a little clue that something was amiss but I put aside any concern and just moved on to getting going with CPAP. And so I continued on with a naïve, positive, cooperative attitude with the DME expecting that since I had, what I thought was an excellent relationship established with the DME, that it would be a rather simple matter of letting them know in a calm manner that I knew that my insurance company would pay for whichever unit I choose and, I offered that if they wanted to know why I wanted that unit, that it was because it would provide efficacy data to my doctor including: pressure, leak rate, apnea / hypopnea index. I thought that would let them know that my request was reasonable and not simply a difficult, unreasonable customer. And when the rep said: “Alright” – all seemed well – and we went on and completed my order with the H4i humidifier and with the plan for me to call back to set up my appointment. I was not given any indication that the DME was going to actually IMMEDIATELY call my doctor and that they would join together to DENY my PERFECTLY REASONABLE, APPROPRIATELY HEALTHY, FULLY INSURED AND ABSULUTELY LEGAL REQUEST !
So – when I found out about that – my patient, cooperative spirit went out the window. I really appreciate all your compliments about my assertive self care and courage, etc. but, frankly, those cantankerous people drove me to it !
And, by the way, I’m glad to hear you shout out that you are proud to be a woman and a successfully in-treatment apnea patient – any / every time you call that out the better ! ! ! And I count that as one more good reason that I posted my discussion – YEAH !
Thank you very, very, very much Susan for all your thoughts, caring and support ! ! !
My Best,
Renee
susan mccord said:DAMN, girl!, you are the poster child for assertive self-care!!!!!!!!! I'm totally impressed with your courage and your level of research to say nothing of your willingness to buck "the system" (or whatever you wanta call crap like that). You're my new hero!!
Seriously, Renee, you've had a rough ride so far and I admire your tenacity more than I can say. You're gonna be so glad you stood your ground once you get into treatment--the APPROPRIATE treatment--hopefully before long you'll be feeling better. It can take awhile but you're gonna succeed. I have no doubt about it. Haven't looked at your Profile yet--where do you live? Was this lab you went to, by any chance a private lab? or was it affiliated with a hospital? I cannot believe they treated you so poorly. ALL of 'em. Just goes to show what some, not all, but some medical practitioners really think about patients. Makes me wonder why they're in the business of caring for people in the first place.....
And by the way, I'm certain you already have gathered this: they CANNOT refuse to give you ANY of your medical records. It's totally against the law. I'm withholding all the language I'd like to spew right now!!!!!!!!!! I'd lol if it weren't SO not funny.
Honestly, if I had a flag I'd be raising it in your honor. Just keep up the good work and let us know how things are going. You make me proud to be a woman and, frankly, proud to be a successfully-in-treatment apnea patient. Never thought I'd be saying THAT, but it's true......
Susan McCord :-)
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Hello Again Susan ~
Yes, I discovered The Manhattan Apnea Support Group of SleepGuide online and I think SG may actually have saved my life. I had posted a prior question about equipment on SG and received the most complete and comprehensive information and advice that could possibly be provided, as well as guidance about insurance. And it was only because of the info and advice that I received on SG that I was able to know what I needed, was able to have the fortitude to make the decisions that I did and was able to persist in jousting with my health care providers without question.
Thanks again,
Renee
susan mccord said:Renee, now I see that you're in New York City. Are you aware of The Manhattan Apnea Support Group associated with SleepGuide? It's a very strong group that meets monthly, run by our SleepGuide webmaster, Mike. If you haven't seen it yet, I'd encourage you to click "Groups" at the top of your Page and check it out. Would be a good resource for you, IF you need anything local that some of us may not know about. Just a thought. It IS good that you're in the city and not a small area where there are fewer options available.....
Susan McCord :-)
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Hey Susan ~
I’m back again. Thank you for your time and thoughtfulness.
As I replied to Judy, the Sleep Study Center I went to is in small division of large a hospital – Columbia Presbyterian Medical Center, 168th Street, NYC, – which is different than Columbia Presbyterian–Cornell Weill at 525 East 68th Street. I have since found out that Columbia Presbyterian–Cornell Weill also has a Sleep Study Program which has a good reputation.
And, yes, I do want to file a complaint against both the Sleep Study Center and the DME but am not sure who to file with. There are other things that I didn’t mention in my posting such as that after my sleep study I went online and researched Sleep Study Centers in NYC and discovered, to my surprise, that while there are 2 listings for Sleep Study Centers – one for accredited and one for non-accredited Sleep Study Centers – that the hospital Sleep Study Center that I went is not on any listing ! So I am wondering how they are registered and what is their official oversight? I had only so far thought of reporting them to the NY State Department of State. I will investigate JCAHO, which you mentioned, too.
And, while I will get to all that, right now my sights are set on my Monday consultation at NYU which was recommended by several members of SG and I am very much looking forward to that appointment. I happen to be a really positive person and it takes an awful lot to have me see the dark side. And, besides, I am so well forearmed with all the info and advice that I have gained from all the SG discussions, that I believe that I am in a very good place to receive the best health care that I need to have and I’m moving ahead with full confidence. In fact all of this madcap turmoil has distracted me from the apprehension and sense of discontent that I was anticipating in using CPAP – now I am actually looking forward to it (almost) without trepidation ! – Using CPAP now seems like it’ll be a piece of cake !
Thank you again for everything !
Best,
Renee
susan mccord said:Renee, Judy's absolutely right. They'll lose their credentialing if JCAHO finds out what lousy, unprofessional practice is happening there. And they NEED to lose it, to protect others from going through what you have......
Susan McCord :-)
Judy said:Am I understanding you correctly, Renee???
... And I got the feeling that they had set up a unit within the hospital to make money in a niche market and to have a way to bill between the hospital, doctors and the DME. ...
This sleep lab was in a hospital??? Wow! There are all kinds of legal complaints that can AND SHOULD BE filed!!! Do you feel up to filing those complaints?
Congratulations on standing your ground and GOOD LUCK, you are definitely on the right track now!!! I certainly wish you much success, heaven knows you've certainly earned it!
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Hello Judy ~
Yes the Sleep Study Center is in small division of a large hospital – Columbia Presbyterian Medical Center, 168th Street, NYC, – which is different than Columbia Presbyterian–Cornell Weill at 525 East 68th Street. I have since found out that Columbia Presbyterian–Cornell Weill also has a Sleep Study Program which has a good reputation.
And, yes, I do want to file a complaint against both the Sleep Study Center and the DME but am not sure who to file with. I have only so far thought of reporting them to the NY State Department of State. There are other things that I didn’t mention in my posting such as that after my sleep study, I went online and researched Sleep Study Centers in NYC and discovered, to my surprise, that while there are 2 listings for Sleep Center Studies – one for accredited and one for non-accredited Sleep Study Centers – that the hospital Sleep Study Center that I went is not on any listing ! So I am wondering how they are registered and what is their official oversight?
For now, my immediate sights are set on my consultation Monday at NYU’s Sleep Study Center which was recommended by several members of SG and I am very much looking forward to that appointment. I happen to have a really positive disposition and, unless given cause otherwise, I tend to expect things to work out well. And forearmed with all the info and advice that I have gained from the SG forum, I believe that I am in a very good place to receive the best health care that I need to have and I’m moving ahead with full confidence.
Thank you, Judy, for your time and for your strong, strong support and wishes for my good luck and success.
Wishing you all the best a well,
Renee
Judy said:Am I understanding you correctly, Renee???
... And I got the feeling that they had set up a unit within the hospital to make money in a niche market and to have a way to bill between the hospital, doctors and the DME. ...
This sleep lab was in a hospital??? Wow! There are all kinds of legal complaints that can AND SHOULD BE filed!!! Do you feel up to filing those complaints?
Congratulations on standing your ground and GOOD LUCK, you are definitely on the right track now!!! I certainly wish you much success, heaven knows you've certainly earned it!
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Hey Susan ~
Good to know. Thanks so very much for your thoughtfulness.
Best,
Renee
susan mccord said:Renee, just FYI, if you ever travel by air, you'll need a copy of your script for security anyway, so it's a good thing to have.
Susan McCord :-)
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Hello Mary ~
Thank you for writing ! And I have to say that I am so lucky to have found SG !
I have gotten my complete sleep study report but I thank you for your advice and I will advice my sister, who had a sleep study shortly after major open heart surgery but was refused her report when was too ill to go in person to pick up her report. I knew she was entitled to the report, but at that time, her rehabilitation took precedence over wrangling over a sleep study report. Also, at the time, neither of us knew anything about sleep apnea and thought, as so many people do, that it’s not anything “real”. But, now that we both know about the seriousness of OSA, she is going to another Sleep Study Center and it would be good to have that earlier report for background. So, thank you for advising of the actual form in order to facilitate getting the records from such an arbitrary, unreasonable hospital department. Any way to make the process smoother is much appreciated. If the doctor won’t sign off on it, so be it, perhaps she won’t get it, but it won’t be that much effort to get, complete and submit a form. And, about the receptionists, they are the first line of defense and the most disagreeable persons in the office. I had thought for the longest time that any negative impression that I had of the Sleep Center was being skewed by the negativity of the receptionists and so I tried to have as little communication with them as possible and I tried to separate their attitude out from the Sleep Center itself. As it turned out, their attitude and behavior was a reflection of the actual core of the Sleep Center. My attitude that things are genuinely good until proved otherwise really tripped me up this time.
However, I am lucky, in other areas, to have health care providers that I consider to be the very, very BEST and who I consider myself so very fortunate to have taking care of me – and I tell them so !
So, on Monday I have a consultation scheduled with another Sleep Study Center which was recommended by several people on SG. And I will be asking the new Sleep Study Center for their recommendations for DMEs. So I have a great deal of confidence in moving ahead. Forearmed as I am with all that I have gained (and keep gaining) from SG, I am in a very good place.
Thanks very much for your well wishes and support !
Renee
Mary Zimlich said:Wow!
On the subject of getting your Medical Records, get a Release of Information Form and fill it out specifying the information you want, e.g. sleep lab reports, Doctors Dictation, and put your name and address down so they send it to you. A lot of times they won't send anything out until the doctor signs off on it. In this case it pays to talk to the receptionist. You might have to follow up on it, but luckily you seem to have no trouble doing that. The Release of Information form makes your request for records official and if you get a copy of the ROI all the better to keep track of when you asked.
Good Luck and Brava!
Mary Zimlich
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Permalink Reply by Judy on
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Renee, you don't really need a formal ROI requisition, you can send a written letter stating the dates and the information you want - in this case the doctor's dictated results, the full scored data summary report w/condensed graphs (sometimes called the full disclosure report) and the Tech Notes from both your in-lab sleep evaluation PSG and your in-lab CPAP titration PSG as well as a copy of your equipment order (prescription). Send this WRITTEN request via Certified Mail, Return Receipt Requested to the Health Information Management office of this hospital. Be sure to keep a copy of the letter, all Certified Mail Receipt and the green Return Receipt card when you get it back.
Write a letter of complaint to 1] the hospital administrator, 2] JCHACO, 3] the state licensing board, 4] your insurance company. Send these letter Certified Mail, Return Receipt Requested as well. As above, be sure to keep all copies. One letter CC'd to the 4 above entities should suffice. Just make sure that you note on the letter it has been CC'd and to whom.
Then write a 3rd letter of complaint regarding the local DME provider and send a copy to 1] the DME provider administrator and 2] your insurance company. Also send them Certified Mail, Return Receipt Requested and keep all proof of certification and copy of the letter and you might as well CC that to both as well.
If you have not received your sleep and titration study reports w/in 30 days there is a post here, I believe in Articles, indicating how to go about filing a complaint under HIPAA.
Again, good luck!
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Hello Again Judy,
Thank you for this fabulous advice. You have gone above and beyond the call of duty and I really do appreciate how concisely, yet how clearly and completely, you have explained all this. I didn’t know that there were Tech Notes and I would really like to have those because the Tech, who seemed to me to be quite experienced and who I understand has been at this for 9 years – and has been working at this facility with this particular doctor for 3 years – had told me after my 1st night that: I hadn’t slept much and that I had not gone into REM until the last hour and that the test had not revealed any particular breathing problems – but, that they might call me to come back for another test because they sometimes do that. So I was surprised when I got a call to come back because I had MAJOR sleep apnea. There seemed such a discrepancy between what the Tech saw throughout the night and what I was told as a result.
Then the doctor, at my in-person visit after my 2 tests, presented a very scary scenario of my oxygen level being at 80% for numerous long-lasting episodes. This was mentioned several times. But when I got home and scrutinized my report, I found things to be not quite as she had represented them.
First off, I found that while I had 76 episodes in 5.36 hours (AHI of 14.3) during my 1st night – I had 168 episodes in only 3.71 hours (AHI of 45.28) on my 2nd night – which is the night she was focusing on. So I’m thinking a lot of the 168 episodes showing up as problems on my 2nd night were not solely due to OSA but also because of the masks that had to be continually readjusted and changed out during that wee little span of 3.71 hours rather than that my AHI actually went from 14.3 to 45.28.
Also, regarding her stressing several times that my oxygen level was dangerously low – around 80% for long periods of time – the statistics clearly states that on my 1st night my Average Oxygen Saturation during REM was 95.4% and during NREM, it was 97.6% with only (3) episodes between 85-90, (9) between 90-95 and the rest <95. And on my 2nd night my Average Oxygen Saturation during REM was 93.2% and during NREM, it was 94.4% and I had only (1) episode between 80-85, (8) between 85-90, (54) between 90-95, and the rest <95.
So, I would really do want to get the Tech’s notes. It likely won’t matter in terms of my health care because I expect to get really good care at the new Sleep Study Center that I’m going to on Monday at NYU, but I would like to have all the info that I can for when I place my official complaint.
So, thank you again for the information you have provided and for your tremendous caring and support !
My very best,
Renee
Judy said:Renee, you don't really need a formal ROI requisition, you can send a written letter stating the dates and the information you want - in this case the doctor's dictated results, the full scored data summary report w/condensed graphs (sometimes called the full disclosure report) and the Tech Notes from both your in-lab sleep evaluation PSG and your in-lab CPAP titration PSG as well as a copy of your equipment order (prescription). Send this WRITTEN request via Certified Mail, Return Receipt Requested to the Health Information Management office of this hospital. Be sure to keep a copy of the letter, all Certified Mail Receipt and the green Return Receipt card when you get it back.
Write a letter of complaint to 1] the hospital administrator, 2] JCHACO, 3] the state licensing board, 4] your insurance company. Send these letter Certified Mail, Return Receipt Requested as well. As above, be sure to keep all copies. One letter CC'd to the 4 above entities should suffice. Just make sure that you note on the letter it has been CC'd and to whom.
Then write a 3rd letter of complaint regarding the local DME provider and send a copy to 1] the DME provider administrator and 2] your insurance company. Also send them Certified Mail, Return Receipt Requested and keep all proof of certification and copy of the letter and you might as well CC that to both as well.
If you have not received your sleep and titration study reports w/in 30 days there is a post here, I believe in Articles, indicating how to go about filing a complaint under HIPAA.
Again, good luck!
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Hi Renee, welcome to SG! I have to read your post again, but my first reaction is to reply for you, you need to try and stay calm. I know this isn't easy, for me too I was desperate to get healed, and impatient, because of lack of sleep. This is not an exact science, it's far from it, and I know you can iron things out with our help.
I took the test machine home, that way you can test in your own bed. If you don't sleep more than the 6 hours required with the apparatus, you can do it a 2nd night. IS THIS POSSIBLE FOR YOU? Who the hell wants to sleep on plastic sheets?
I use a Respironics Remstar plus w/ "C" Flex, it's what I got in May 2006. I don't know what the "C" machine is, but my machine is a damn good machine, and I don't believe all the electronics, mobile signals to the doctor from the machine, etc, make your therapy any better, for me at least. I feel great, with a basic machine. I don't want electronic bells and whistles on my machine, like a car, that's the stuff that goes hay-wire. I know the doctors here will disagree, that's fine. They want to sell features, or they truly believe in certain patients, it is necessary, I understand...the machine provides continuous heated to body temp air and relieves that upon exhalation. I know you you want to get the best value. But you can always upgrade later. I'm sure others here can help you with deciding on a basic machine and mask.
We all want you to feel better, my point is, it's a process, to arrive at the best solution. We are all here to help you arrive at the best solution, so keep us posted, ok?
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Permalink Reply by susan mccord on
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Hi Jerri! Glad to have you back. I missed you!! Keep your chin up and don't let the b......s get you down.
Susan McCord :-)
Jerri Lynn said:Wow Renee......I empathize with you. I too had very horrible experiences with both my DME and Sleep Study Ctr. I too, am in the middle of trying to get set-up with another DME. So, So frustrating......even more stressful!
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Hello Gordon,
About your suggestion re: my Sleep Center, I don’t expect that I would be able to take the apparatus home given that they did not even want me to have my test results or any communication with the doctor after the tests were conducted. Seems that they are set up to conduct 2 tests and then the receptionist assigns the client to a DME and the DME takes it from there. My requirement to get my test results was not a welcome request and that seems to be where we got off to a rocky start.
Also I had inquired on the SG forum about RedMed CPAP equipment and got great responses. Members advised me that the S8 AutoSet II included the most important feature – efficacy data, which would provide the leak rate and apnea / hyponeanea index each night for my doctor – BUT THAT I could also read that info and which I very much wanted – given that my doctor did not seem inclined to continue to monitor my treatment. Also the S8 provided EPR – exhalation pressure relief, and Ramp (which I wanted because my prescribed setting is 18).
So given that the C-Series Tango did not contain the primary, integral component of efficacy data (pressure, leak rate, apnea / hypopnea index) along with EPR and Ramp (Ramp is only optional with the C-Series), SG members advised that I definitely use the S8 and that I not use the C-Series, which was the ResMed unit that the DME wanted to deliver to me.
My concern came when the DME’s rep attitude changed so dramatically on the phone when I suggested changing the unit I was scheduled to receive. Up ‘til then, I thought we had a really excellent relationship and that there would be no problem, that the DME might not want to provide the S8, but rather the next model down and I was going to be fine with that. Even though members had advised me that, by law and by insurance regs, I was entitled to ANY unit I wanted, I didn’t necessarily care if I didn’t get EPR – which only the S8 provides – but I DID require getting one of the 2 units that contained the efficacy data component. And once they become completely resistant and combative, I did not think they would be at all receptive to upgrading in the future.
However, once the DME closed down communications and the doctor became irate, I could very well have accepted the C-Series and gotten started, especially being that I am a complete novice to OSA and CPAP and I wasn’t really interested in special features. However, by that time, I had already researched ResMed’s website (as my DME had suggested) and gained a lot of info and advice through the SG forum – and so, since, on the one hand I had a combative DME and doctor and, on the other, a ResMed website and info and advise from the SG forum – I had to weigh the varying info I had and I thought that I needed to, at least, start out with the minimal basic equipment to get a decent start.
And as I look back on all this, I can see that could-be that I haven’t gone about this in a very calm way, but I am now pursuing the process in more of a step-at-a-time manner and I am now focusing only on my Monday morning consultation with a new Sleep Center about which I feel very positive and confident. I am expecting that they will be able to guide me right along to get started. And, besides that, I feel really reinforced by the SG community. I really can’t imagine starting treatment for OSA without knowing about SG. It has already made a world of difference for me. I think it could make the difference between compliance and non-compliance. And I am pleased to say that I have heard from a doctor that some of his patients just could not be compliant with CPAP and I was able to tell him about the SG website and community so that those people will be able to get the info, advice and support that has helped me so much and that I hope will be able to help others to become rested and healthy.
And, now in signing off, I would like thank you for your advice and kind support. And I would like to wish you the very best as well.
Thank you,
Renee
gordon nelson said:Hi Renee, welcome to SG! I have to read your post again, but my first reaction is to reply for you, you need to try and stay calm. I know this isn't easy, for me too I was desperate to get healed, and impatient, because of lack of sleep. This is not an exact science, it's far from it, and I know you can iron things out with our help.
I took the test machine home, that way you can test in your own bed. If you don't sleep more than the 6 hours required with the apparatus, you can do it a 2nd night. IS THIS POSSIBLE FOR YOU? Who the hell wants to sleep on plastic sheets?
I use a Respironics Remstar plus w/ "C" Flex, it's what I got in May 2006. I don't know what the "C" machine is, but my machine is a damn good machine, and I don't believe all the electronics, mobile signals to the doctor from the machine, etc, make your therapy any better, for me at least. I feel great, with a basic machine. I don't want electronic bells and whistles on my machine, like a car, that's the stuff that goes hay-wire. I know the doctors here will disagree, that's fine. They want to sell features, or they truly believe in certain patients, it is necessary, I understand...the machine provides continuous heated to body temp air and relieves that upon exhalation. I know you you want to get the best value. But you can always upgrade later. I'm sure others here can help you with deciding on a basic machine and mask.
We all want you to feel better, my point is, it's a process, to arrive at the best solution. We are all here to help you arrive at the best solution, so keep us posted, ok?
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