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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 Laura Hand on
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I learned so much from this site....just reading and realizing someone else has this same thing. But, so many people do not know what this condition is, or how it cant impact them. Or give up because the process can take a while. I can look back and track the symptoms....every time I would go to my regular doctor, we both thought it was depression and went up on my meds. I was lucky enough to have a saint of a dentist that INSISTED I be tested. It always seemed strange that my regular doc "missed" it and the dentist caught it.
I go next week for a titration study to start CPAP.....I am hanging alot of hope on feeling better once I actually get treated.
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Permalink Reply by Mike on
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I love your story Laura. Let us know how we can help you, if at all, once you finish your titration study.
Laura Hand said:I learned so much from this site....just reading and realizing someone else has this same thing. But, so many people do not know what this condition is, or how it cant impact them. Or give up because the process can take a while. I can look back and track the symptoms....every time I would go to my regular doctor, we both thought it was depression and went up on my meds. I was lucky enough to have a saint of a dentist that INSISTED I be tested. It always seemed strange that my regular doc "missed" it and the dentist caught it.
I go next week for a titration study to start CPAP.....I am hanging alot of hope on feeling better once I actually get treated.
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Florence, request a copy of the doctor's dictated results (1-2 pages each) AND the full scored data summary report w/condensed graphs (5+ pages each) from BOTH of your in-lab PSGs (the evaluation and the CPAP titration) as well as a copy of the script for the APAP. These are part of your medical records and as such you have a LEGAL RIGHT to them under HIPAA (assuming you are in the USA). Just tell them you will be by to pick them up next Monday (or whenever is convenient for you - just give them a couple of days to get them ready). You've already let them know that you do NOT appreciate being kept in the dark so your request should come as no suprise to them. And if it does .... oh well, too bad, so sad.
It may well be that the doctor isn't completely satisfied w/the titration study results and prefers to have the data from a two week trial of an APAP to compare w/the titration results so that there is a better chance of getting you set to the right pressure for you ASAP. It sure beats trial and error. It sounds like a good move to me - aside from not sharing your study data w/you sooner.
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Permalink Reply by Dee on
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I feel once people get HERE, they're going to be ok. It's the ones who don't know there are places like this site to help them. Mike left me a post on Twitter which is how I found you guys. One thing I'm doing is informing my menopausal audience about sleep apnea on my website. I've been working on this page http://www.minniepauz.com/sleepapnea but don't have all the info I want on there. Not all of my subscribers (over 12,000) will have SA, but if they don't, maybe their husbands have it so I feel like I'm at least bringing some awareness to the topic. Of course I put a link to Sleep Guide on there.
Just last night at dinner I passed along the tips on how to put your mask on...which really helped me btw....to an elderly lady who just can't get used to the whole "contraption" as she calls it.
Personally, I was on a frantic search for a machine after being diagnosed and it was only because of this site that I got a machine I needed (bipap). I tried Awake in America (and was extremely methodical about the application process), but was turned down...not because I didn't qualify, but they said something was missing in my package so I'd have to wait 6 mo. to apply again.
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Permalink Reply by RockRpsgt on
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The entire hour would be feeled with my questions for the 3 of you!
j n k said:Yeah, Rock, it would be great to meet you and yours!
And in case you are wondering, yes, for the record, Mike and Dr. Park are just as nice in person as they are in this online community.
jeff
Mike said:Actually, it's me, jnk and dr park all in the same group. Whenever you're in town you should stop by!
Rock Hinkle said:Mike that is awesome! You and Jeff in the same group! i wanna go!
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Permalink Reply by sleepycarol on
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This site rocks and is helping educate those that are having problems with their therapy to find ways of overcoming those issues.
Mike, have you though about posting a link here where people could download your brochure to give to the health care professionals in their area and to those that are affected by sleep apnea or think they may have sleep apnea. I felt it was useful when I used your brochure to give out to friends that I knew that would benefit from this site and to some of the local doctors. If others would do the same it would help spread the message.
What happened to the bumper sticker idea? Is it still in the works?
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What brochure?
sleepycarol said:This site rocks and is helping educate those that are having problems with their therapy to find ways of overcoming those issues.
Mike, have you though about posting a link here where people could download your brochure to give to the health care professionals in their area and to those that are affected by sleep apnea or think they may have sleep apnea. I felt it was useful when I used your brochure to give out to friends that I knew that would benefit from this site and to some of the local doctors. If others would do the same it would help spread the message.
What happened to the bumper sticker idea? Is it still in the works?
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Rock,
Mike has a brochure that he sent me in an email that is awesome. Please ask him for a copy!!!
I really feel it would be beneficial to have a link to it somewhere on here so it could be downloaded and we could give them out. It would help educate people, in my opinion.
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hmmm. was it the blue and white tri-fold one?
sleepycarol said:Rock,
Mike has a brochure that he sent me in an email that is awesome. Please ask him for a copy!!!
I really feel it would be beneficial to have a link to it somewhere on here so it could be downloaded and we could give them out. It would help educate people, in my opinion.
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I think I know which brochure you mean. If anyone is willing to help me distribute them, I can send a batch to you through the mail... I can certainly use the help --- just private message me or leave a comment on my wall. I'll be happy to send any member as many as the member wants to distribute.
Mike said:hmmm. was it the blue and white tri-fold one?
sleepycarol said:Rock,
Mike has a brochure that he sent me in an email that is awesome. Please ask him for a copy!!!
I really feel it would be beneficial to have a link to it somewhere on here so it could be downloaded and we could give them out. It would help educate people, in my opinion.
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Thanks Mike. The brochures are great and if a few of us would help, it could make a difference!!
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Permalink Reply by Jerri Lynn on
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I'm new to this. Was just diagnosed in Aug with severe sleep apnea with 33.13 AHI, 73% sleep efficiency, 83% oxygen saturation. Did a 2nd night sleep study with CPAP. The people were nice but basically didn't give a darn what I had to say about mask preferences. They basically told me they were the experts and to follow their recommendations. They only allowed me to use nasal pillows which left my left nostril sore and bloody for two days and then sore with scabs for another 3-4 days. That was 9 days ago. Haven't heard back from my doctor. I'll call him tomorrow. I already know what provider I want to use and what is covered by my insurance but I think everyone has their hands in money for the CPAP so everyone involved in the study wants me to use certain products and certain CPAP providers. The whole thing has me very upset and concerned. I feel everyone is in it more for the money than for my health and comfort. How do I handle this? The sleep study facility I went to, would only use and recommend to my doctor, Respironics products. I think I should have some say in this since I'm the one that has to use it. I want to try a product called Nasal-Aire II by Devilbiss, Item # K2A. The sleep study facility simply trashed every product that isn't by Respironics.
I don't have a very open mind about any of this to begin with, and would prefer to go the surgical route although the success rate is low. But at least there would be some even slight chance of improvement. I'm seeing an ENT surgeon tomorrow but will at least try the CPAP for 3 months before proceeding with surgery if the providers will take my opinions into consideration instead of looking at the profit in it for them.
Please everyone, give me your feedback and guidance. Any assistance would be greatly appreciated.
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