"please keep me updated about oximeters "
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Patients Stepping Up to Help Uneducated Masses
There is so much ignorance of sleep apnea. We here at this forum are the lucky few who actually know a little bit more than the average Joe about the condition. But every day, thousands of people are being diagnosed with sleep apnea and walking into the mine field that we all have experienced. My question is what can we as the educated patients do for these newcomers, and how do we reach them in time?
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Replies to This Discussion
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Permalink Reply by Judy on
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WHOA, Jerri Mathis, I wish I had read this post earlier!!!
This is YOUR health, YOUR sleep, YOUR therapy and YOU are paying for it, whether thru insurance or out of pocket is immaterial!!! These people, like it or not, are YOUR EMPLOYEES, YOU are their EMPLOYER!!! YOU are PAYING THEM for their ADVICE and expertise. BUT YOU are the one to endure the benefits or consequences of any actions taken. It sounds like it very well may be NECESSARY to DIPLOMATICALLY remind them of this.
As I understand your post you have called your insurance company and have asked and have a list of local DME CPAP suppliers your insurance is contracted with so you know which local DME providers you have the option of using.
Since your sleep lab and their sleep doctor appear to be so DICTITORIAL I would send a WRITTEN REQUEST for 1] the sleep doctor's dictated results (1-2 pages each) and 2] the full scored data summary report w/condensed graphs (5+ pages each) from both your in-lab sleep evaluation PSG and your in-lab titration PSG as well as your equipment order (script). FAX it to them for speeding up the process and then also send a copy via CERTIFIED MAIL, RETURN RECEIPT REQUESTED. Be sure to keep a copy of your WRITTEN REQUEST and all Certified Mail receipts, including the green return receipt card when it is returned to you. These copies are all part of your medical records and as such you have a LEGAL RIGHT to them under HIPAA, assuming you are in the USA. If they still refuse to provide those records there is a post in the Articles section here w/links to HIPAA and filing a complaint w/them, etc.
IF I am understanding you correctly the sleep lab sent the sleep doctor's recommendations to your family doctor. Have you asked your family doctor to rewrite the equipment order (script) for the equipment YOU want? My family doctor would do so for me W/IN REASON. (NOT against his better judgement but if he is comfortable w/what I want).
VISIT each of your insurance's local DME provider options and talk to them and their RRT (registered respiratory therapist) and explain the situation and see how well you feel you can work w/them and how well you feel they will work w/you. How lenient is their mask exchange policy. What brand and model CPAP do they PREFER to provide and what brand and model CPAP WILL they provide?
THEY are NOT in the driver's seat, YOU are. The only thing you NEED from any of them is that equipment order (script) because you always have the option of buying online. Most likely out of pocket, but depending on your copay w/insurance there may NOT be that big of a difference. Good luck!!
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Permalink Reply by RockRpsgt on
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jnk with a respironics! Oh my! What is the world coming to? I hope everything is ok in the world of jnk.
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"Fisher-Price-toy look of the ResMeds"?????? .... "manly look of the Respironics"????? You LIKE the look of those ugly black boxes??? Ach!!! jnk!!! You have NO taste at all! Rank them on therapy, rank them on data .... but LOOKS??? And you prefer the look of those ugly black boxes??!!!! No taste at all, jnk, NONE!
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Permalink Reply by susan mccord on
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David--where did you get the brochures you hand out? Do you, or anybody else on SG, know how we can buy educational materials, i.e., brochures, pamphlets, etc.?? Or do any of the national apnea organizations provide them for education??
Susan McCord :-)
David Lauro said:For me, CPAP therapy is like sharing the Gospel with people. I mostly share how wonderful my life is today compared to a time when nagging headaches, constant fatigue, and poor circulation was a part of my everyday life. People are more likely to attribute their health problems to other common known diseases like diabetes or circulatory problems. They are oblivious to the sleep apnea probably because they are unaware, or can't see how therapy will help.
My sleep study report has shown that I stopped breathing several times for almost TWO MINUTES! Now that's a whole lot of oxygen not making it to the brain, much less to the rest of your cells in your body. Stress and inflammation ensues, and the diabetes and heart condition worsens. People who even have a hint of sleeping problems, or are told they stop breathing or have erratic snoring, owe it to themselves to check in to a sleep study NOW!
After only a month, my blood glucose levels have become more stable, and I have way more energy now! Oh, and those headaches... gone now too! As educated patients, it is our responsibility to INSIST others check into this therapy if they show the right symptoms. I often carry a few brochures that I hand out as I share my story with them. I also post my experiences in blogs and other web communities whenever health and sleep disorders become a topic. It's really up to us...our experiences, our testimonies to enlighten the masses. It's up to us to convince them that snorkels can be "cool", and make good bedmates too! :-) God bless.
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LOL, Judy!! And they say WOMEN are the goofy, soft-hearted, sentimental ones....!!!
McCord :-p)
Judy said:"Fisher-Price-toy look of the ResMeds"?????? .... "manly look of the Respironics"????? You LIKE the look of those ugly black boxes??? Ach!!! jnk!!! You have NO taste at all! Rank them on therapy, rank them on data .... but LOOKS??? And you prefer the look of those ugly black boxes??!!!! No taste at all, jnk, NONE!
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Permalink Reply by Jerri Lynn on
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Jeff, Judy, Everyone
Thanks everyone for the replies. I saw the surgeon today. He was great!.......better than my own doctor or the people at the sleep labs. He was pretty insistent about how good CPAP is and was open and honest about OSA. He said CPAP is by far the best way to go and while it doesn't work for some, he won't do surgery on anyone until they've tried CPAP for at least six months. He spent a lot of time with me and answered a lot of questions. I felt so comfortable with him. He explained other options but said most weren't for me and explained why based on his examination of my throat and sleep study results. Although he's a surgeon he said surgery is the VERY LAST resort and that CPAP is the best treatment in over 90% of persons willing to give it an honest try. He offered his assistance in trying various masks and nasal canula's and pillows, as well as providers of them. He said the same as all of you on here.......that it's important to shop around and find the provider I'm most comfortable with. He basically talked me out of surgery......I felt he was there for me and NOT my insurance money. Although the poopie sleep lab still hasn't sent the results of the CPAP sleep study to my doctor they said I definately need the CPAP but that their doctor hasn't yet signed the reports to be forwarded to my doctor. It's all in a holding pattern on the sleep lab doc gets his ducks in a row. As soon as that happens I'll follow your recommendations and request copies of all the physicians notes etc. from the sleep lab.
I'm so glad I found this place. Thanks everyone so so much!
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The new Resmeds don't look so bad. Sleek almost. I do see your point on the manly view of the respironics. How are you feeling though? Better, worse, or the same?
j n k said:Obviously you have been speaking to my wife! :-)
I don't get the blue lights or hooking the hose up to the back of the humidifier at all, but design-wise, I like the ugly gray box. It looks like something you might store ammo and fishing lures in. :-D
Judy said:"Fisher-Price-toy look of the ResMeds"?????? .... "manly look of the Respironics"????? You LIKE the look of those ugly black boxes??? Ach!!! jnk!!! You have NO taste at all! Rank them on therapy, rank them on data .... but LOOKS??? And you prefer the look of those ugly black boxes??!!!! No taste at all, jnk, NONE!
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jnk have you adjusted any of the inner workings of the respironics? Ti, rise time and such? Just wondering how far you are going in your experiments. Judy gave me a 101 on the resmed when we were trying to get rid of that puff. I have not had the chance to do the same with the resp. version. Every time we have an extra in the lab they seem to walk away. Must be alot of needy people in the indy area. Sooner or later Ill get my hands on one.
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Ah, Jerri, what a wonderfully open and honest surgeon you've been so fortunate to find!!!!
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From what I learned with Judy it just depends on how many breaths you take per minute. If you are above or below the average playing with these settings might benefit your therapy. I have found that fine tuning these settings are not as taboo as self titration to the other techs. They consider these adjustments a comfort setting.
j n k said:There is no rise time adjustment when Biflex is enabled, and Ti Max is hard coded at 3 seconds. The Respironics machines have a number of ways of sensing transitions. Works great for some patients, not so well for others, it seems.
Here is an informative discussion over yonder:
http://www.cpaptalk.com/viewtopic/t45095/Question-for-BiPAP-Auto-M-...
Rock Hinkle said:jnk have you adjusted any of the inner workings of the respironics? Ti, rise time and such? Just wondering how far you are going in your experiments. Judy gave me a 101 on the resmed when we were trying to get rid of that puff. I have not had the chance to do the same with the resp. version. Every time we have an extra in the lab they seem to walk away. Must be alot of needy people in the indy area. Sooner or later Ill get my hands on one.
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Permalink Reply by TR on
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At 10:43pm on October 21, 2009, Tim Rupe said…
Okay so this is my story. I have had trouble with my snoring waking me up several times per night for most of my life. I am now 42 years of age. I went to a sleep study in 2004 and they placed me on a BIPAP machine. After having 3 more sleep studies due tot he levels not being set correctly I finally started to actually get some sleep to where I could tellt he difference from prior nights with out the machine. I wear a FULL FACE MASK due to having a deviated septum, I am a mouth breather from what my doc says LOL. Anyway I do not use the humidifier unless I am in a dry climate, I live in Seattle, WA so no problems with worring about a dry climate LOL. During my sleep study I woke up 36 times per hour due to not breathing 36 times for up to one min. with out a bi-pap hooked up to me. No wonder I got no sleep! ya think! sheesh! okay so anyway I used the bi-pap and was okay with my sleep I was getting with it for 5 years. Then recently in Jan 2009 while wearing my mask I woke up with a bunch of paramedics and cops surrounding my bed and my wife above me telling me to lay back down. I was of course feaked out! I was asking everyone what happend, what happend to me! I could hardly breathe at all, very little air was coming and going from my lungs. If I sat up the breathing got worse. They told me I had a grand mal seizure! and during this seizure which I had never had before in my entire life nor has anyone in my family had I broke 4 thorasic vertabrae? OUCH! yeah it hurt bad and still does. So of course at the hospital that night they ran every test you could imagine on me about 35,000.00 dollars worth! cat scans or my backl, MRI of my brain, EEG, EKG, Heart ultra sounds, full heart work ups at a heart specialist. Full blood work and really still did not know what was wrong with me. Then I scheduled myself to go see a nuerologist, she had my heart checked again with overnight heart monitors and nothing came back the ticker was fine thank goodness! so she told me she thought it was due to my sleep machine not being adjusted right? so she sent me to another sleep study number 4 total and it said I had severe sleep apnea of course which I already knew......and I was told me airflow and pressure needed to be adjusted so they adjusted it. Also they placed me on seizure meds KEPPRA 100MG per day. Then 6 months went by and I dealt with my broken back and the whole time I went right back to work with my broken back because I could not afford to miss work....that sucked but it is what it is. Unforutnatley in July 2009 I had yet another siezure with my Bi-Pap machine on and re-broke all of my vertabrae that had just started to heal in my back UGH!!!!!!!! I woke up this time in the ambulance and oh boy was that intersting! I was like is this a dream or am I in an ambulance!!!!!!!! the EMT said you had a gran mal seizure while sleeping! I said great not again! so I went to a different hospital this time and they ran a bunch of tests and determined that they "BELEIVE" my bi-pap machine was defective? so I had my respitory doc look at it and he said the motor was intermitant and could have stopped while I was sleeping and suffocated me? I was told that this could not happen that my mask could be breathed through even if the power went out! there was suppose to be some valve that opened for me to breathe? anyway I was told that maybe I breathed in my own air over and over again and got poisended by this? which caused me to have a seizure? I have yet to go see my neurologist for this second seizure because I lost my job due to the economy and lay offs so I have no insurance! UGH!!!!! so if anyone out there has had a seizure while wearing their full face mask on a cpap or bi-pap please comment back to me! thanks and as far as getting use to using the bi-pap due to the airflow it took me about 6 months, so just bear down and deal with it! just dont take it off. I still use my NEW bi-pap machine even though I feel my seizures were triggered some how by the mask and machine. I figure I will use it until someone tells me it could kill me, I am just not sure at this point what is wrong with me???
TimDelete Comment
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I feel more books should be written on the subject by well educated doctors that understand whats really happening to us all and how important this is to us. I have researched the few books that have been published and there just are not enough out there. I love this web site! this website is great!
Tim'
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