*UPDATED with my paper*Please take this poll / college paper

The sleep Dr. that diagnosed me ran a both a sleep clinic and a DME out of his secondary office. There was a "Chinese Wall" between each portion of the business.

As a result, the DME portion began to act just like a regular DME (lack of support, poor patient training, etc...). On the upside, because the sleep Dr. was marginally in charge, the only machines they had were the top-of-the-line PRS1 and S9 series.

During my titration study - the ST asked if I was a mouth breather (yes), slapped a Mirage Quattro on me and said "Insist on this mask when you meet the DME". First and second meetings with the RT amounted to "Use soap and water on everything, and never attempt to adjust the mask straps". No discussions about software, ramp pressure, different mask options, etc...

I later found out that the RT was no longer with the practice, but at that point I'd already had the last straw with the DME side of the business. Actually, that reminds me, I haven't gotten around to cancelling my 12 month followup yet

I had trouble when pressures went over 10 during my sleep study.

Bi-level was successful in treating my obstructions... Doc specified bi-level pressure settings, need for a heated humidifier and type of mask on my study results. nothing else

The DME proceeded distributing the equipment based upon the study report requirements.

I got lucky and got an Resmed S9 Vpap auto.

Never got a copy of my actual prescription until my 90 day visit. She was very agreeable to detailing the need for data, heated humidifier & climate line hose on it.

DME's are idiots. This forum and self-education are the way to go. I have a pressure of 18 and use a Fit Life total face mask, which covers from eyebrows to chin. It took six months and over $1000 in buying useless, leaking, squealing masks until I settled on the Fit Life. I have been using it successfully for two years now. The initial process was slow and painful, but I was told "Use the CPAP or die" so I was committed to adjusting to it. It took almost a full year before I felt an observable improvement in my sleep patterns, unlike many who found improvement within a few nights. Now I won't go to bed without it, but still wear earplugs to block out the sound of the airflow.

sunnyway wrote: It took almost a full year before I felt an observable improvement in my sleep patterns, unlike many who found improvement within a few nights.

sunnyway, thanks for sharing your experience. While some might find your story discouraging ("a full year?" ), the reality is that many people struggle for quite a long time before they feel improvements. For those who are several months in and wondering if they will ever feel better, your story gives hope and the message "hang in there, it will happen."

I just wanted to thank everyone that has participated so far. I really appreciate it. Sorry I haven't been tending to your questions well, I'll try to respond to several here.

DreamStalker wrote: Just my 2 cents though I'm no debater nor do I play one on TV.

Thank you for the suggestions. I've got a pretty short turnaround time on all of this so I wasnt able to conduct seperate studies, but I think this will be sufficient for my needs.

codinqueen wrote:Can't find where to vote. Isn't there just a box to check or something easy?

Yes, you must be logged in. You should then see a poll at the top of this page where you can vote.

kaiasgram wrote:

sunnyway wrote: It took almost a full year before I felt an observable improvement in my sleep patterns, unlike many who found improvement within a few nights.

sunnyway, thanks for sharing your experience. While some might find your story discouraging ("a full year?" ), the reality is that many people struggle for quite a long time before they feel improvements. For those who are several months in and wondering if they will ever feel better, your story gives hope and the message "hang in there, it will happen."

I agree, thanks for sharing this. Everyone responds differently and its good to not give up hope!

kaiasgram wrote:You mentioned this was for a debate paper -- when you have time would you tell us more about it? Sounds interesting.

Sure. Debate paper is probably a little inaccurate, although when I started this, the first exercise was to debate the thesis with another student to poke holes in my paper so I could improve it. The proper term is a “Position Paper”. Mine focuses on patient rights when it comes to Sleep Apnea and its effective treatment. It’s been pointed out several times to me that I can’t just make a claim that “most doctors” hide treatment option information from patients. I need something to back up that claim. The poll was my attempt to at least get some data that supports my claim.
I’m happy to share it here with everyone when I’m done although I fear it may not live up to some of the expectations some of you may have. I’ve never done one of these before and I’m learning as I go, but I hope to do it justice for everyone.

jnk wrote:Went something like this.
I waive all rights to the above words.-jnk

This comment, and the others like it, made me smile. Thanks guys!

kaiasgram wrote:blakepro,
The official position of the American Sleep Apnea Association is reflected in the Terms of Use on their forum. While they do permit discussion of software monitoring, they forbid and censor attempts to discuss patients adjusting their own pressure settings. Since your general argument is that patients are not encouraged to be active participants in their therapy, I would think you could cite this in support of your argument (or at least keep it in your back pocket in case it becomes relevant to bring up :

Posts about CPAP adjustments:
Although the ASAA advocates being proactive in ones treatment, we can not advocate or encourage making pressure adjustments or other CPAP clinical adjustments without consulting with your physician. Please do not post instructions or how to guides for making adjustments or entering clinician menus to make adjustments. We thank you for your understanding. Do not post links to clinician menus or similar menus not authorized for access by manufacturers; these sorts of posts will be moderated.

Thank you very much for this. This is very helpful. I will probably use this in my paper.

eeckel wrote:When your paper is done could you please post it here. Also let us know how the debate goes. We're cheering you on.

Thanks. The debate part went well. As I mentioned above, the paper is actually a “position paper” so I kind of misspoke but I’ll post it here when it’s done. I hope it can live up to everyone’s expectations.


--------------------------------------

Again, I just want to thank everyone for their kindness and taking the time to vote and the many that posted their experiences and thoughts. You guys are great.

Please feel free to continue to vote and share your thoughts. I’ll be updating my stats and paper right up until the submission deadline at the end of the week.

"It’s been pointed out several times to me that I can’t just make a claim that “most doctors” hide treatment option information from patients. I need something to back up that claim. The poll was my attempt to at least get some data that supports my claim."



By coming here and posting with a sub-group of those who use CPAP, I don't know that your data will be particularly valid. With advice on this board, there are those who did their research first and got what they needed rather than passively accepting what may have been given. I imagine that would skew the results.

squid13 wrote:I got educated here on this forum before I went for my sleep test and seen the DME . I basically told them what I wanted and would take nothing else.

Pretty much exactly the same for me. Lincare brought out the basic model and I knew from reading things posted here that it would not give me the efficacy data I could use in SleepyHead. I said I wanted the Elite model and I was told my doctor didn't write the prescription that way (I don't remember ever seeing a prescription). I said I still wanted it and said I would talk to my doctor if I needed to. Then I was told that it would probably cost a couple hundred dollars more, which I would have to pay because my insurance wouldn't cover the difference. I said I didn't care I still wanted it. So I was told they would check with somebody about the cost difference. I think there wound up being none.

Now Lincare tells me, eight months or so later, that I will never own the machine, even though I confirmed with them that I would own the machine before I started making payments. All of this nonsense is because of government interference. CPAP should be OTC. I can't buy a new mask from a new vendor without permission slip from a doctor. Seriously? What would I do without all of this big-government FDA protection. Walk in and buy a better machine than I have now for hundreds less, probably.

ughwhatname wrote:By coming here and posting with a sub-group of those who use CPAP, I don't know that your data will be particularly valid. With advice on this board, there are those who did their research first and got what they needed rather than passively accepting what may have been given. I imagine that would skew the results.

Probably not. Granted we are not a random sample of the "cpap population" but remember the poll is asking what happened at the time of diagnosis. Only 6% of us were informed at the time of diagnosis about data capable machines and available software by our doctor or DME. This was the focus of blakepro's position paper, his main argument being that most doctors/DMEs do not educate or inform patients at the time of diagnosis about data capable machines and software options.

The fact that some of us did our research first is neither here nor there as far as the main focus of this project goes. Even at that, only 23% of us reported having done our research first. Likely some of the numbers in this poll would be different in a truly random sample, but fortunately the focal item strongly supports blakepro's position and I think in the general population of cpap patients his position would still be strongly supported.

kaiasgram wrote:

ughwhatname wrote:By coming here and posting with a sub-group of those who use CPAP, I don't know that your data will be particularly valid. With advice on this board, there are those who did their research first and got what they needed rather than passively accepting what may have been given. I imagine that would skew the results.

Probably not. Granted we are not a random sample of the "cpap population" but remember the poll is asking what happened at the time of diagnosis. Only 6% of us were informed at the time of diagnosis about data capable machines and available software by our doctor or DME. This was the focus of blakepro's position paper, his main argument being that most doctors/DMEs do not educate or inform patients at the time of diagnosis about data capable machines and software options.

The fact that some of us did our research first is neither here nor there as far as the main focus of this project goes. Even at that, only 23% of us reported having done our research first. Likely some of the numbers in this poll would be different in a truly random sample, but fortunately the focal item strongly supports blakepro's position and I think in the general population of cpap patients his position would still be strongly supported.

Well, I could just be outside the norm. I had my sleep study done and then didn't officially get my diagnosis from my doctor until 2.5 weeks later at my followup appointment. I figured out about 2:00 a.m. the night of my sleep study that I was diagnosed with apnea since the tech came in, told me I "qualified" to be hooked up to the CPAP. Since I knew then I had apnea, I started researching at that point. By the time I got to my doctor's appointment, I had done considerable research. Fortunately for me, my doctor had my best interests at heart and prescribed a fully data capable machine.

I had considered that the poll is probably at least a little skewed just due to the nature of the typical person that would attend a board about Apnea V.S. just the general public that may not know or care much about treatment options. Thats partly why I wanted to focus on the diagnosis and what the doctor did when initially setting you up with your therapy.

Good thoughts though guys! Please keep them coming. Again, I really appreciate all of the participation.

As requested, my final paper is pasted below.
I had a restriction on length so I had to be very selective with what I could and couldn't include. I wish I could have shared more of your experiences and such.

In any case, I just wanted to thank you all for your help and for taking the time to do the poll and share your thoughts. I really appreciate it.

Okay, here it is: I welcome feedback, but please be gentle with me. I've never done one of these before and I'm just learning.

Patient Rights

Doctors should be required to fully disclose all medically sound therapies and provide the patient with tools to monitor their therapy and adjust it as needed. This is especially true with patients diagnosed with Obstructive Sleep Apnea (OSA), a sleep disorder that causes the patient to stop breathing during their sleep. This is usually caused by the airway becoming obstructed or closed off when the muscles relax during sleep.

According to Dr. Phil Westbrook (2013), OSA affects one in every five adults, making it about twice as common as asthma (How Common is Obstructive Sleep Apnea). Many people do not know that they have the disorder until a loved one lets them know that they have stopped breathing or have gasped for air during their sleep. This may happen hundreds of times in a single night resulting in poor sleep, poor health, and sometimes abrupt death.

The most common treatment for OSA is the use of a Continuous Positive Airway Pressure (CPAP) machine. This machine provides a low level of continuous airflow to help keep the airway open by blowing air through the nose or mouth. The optimal amount of pressure needed is different for everyone and can change frequently due to simple things like being sick, aging, weight change, taking certain medications, or other common factors.

I have sleep apnea: I was diagnosed eight years ago. When I was diagnosed, I was given a very basic CPAP machine that was set at a certain pressure the doctor chose for me and I was given very little instruction. I was to use the machine each night, and that was it. I noticed some improvement, but after five years had passed, struggling with the therapy, I felt like it was not working very well. I started searching for answers, talking to people, and discovering that there were better options than what I had.

There are CPAP machines that will actually record how effective your therapy is and provide reports so that you can take action and improve its effectiveness. There are even machines that will detect problems while you sleep and make minor adjustments on the fly so that you can have the best therapy possible through the night. The interesting thing is; these detailed reports are not accessible by the patient. Also, the ability to make adjustments to the machine pressure and other settings are locked away in a secret menu that only the doctor is supposed to be able to access.

What is the motivation of locking the patient out of viewing reports and adjusting their own pressure settings? Imagine how ineffective a diabetic’s therapy would be if they were not allowed to view the reports from their blood sugar tests, or if they were not allowed to adjust the amount of medicine they use for treatment. CPAP therapy should be handled the same way. I will admit that adjusting diabetic medicine and adjusting CPAP settings can be dangerous if handled incorrectly, but with proper education, the patient is empowered to take control of their own health and make important decisions about their therapy.

I discovered these better treatment options and immediately felt betrayed by my medical providers. I resented that they let me struggle and suffer for five years without disclosing information to help me manage my own care. I have been using more advanced treatment and managing my own pressure settings for about three years now and have been amazed at the improvement I have experienced with the therapy.

Wondering if my experience was an isolated event or part of a bigger problem, I decided to conduct a poll among people who have been diagnosed with OSA to find out what their initial diagnosis and education was like. 133 people responded to my poll and a staggering 83% indicated that they were not informed by their doctor about advanced treatment options or reporting capable machines (cpap talk online forum, 2013). It is not surprising then, to learn that the official policy of the American Sleep Apnea Association (2013) is that patients should not adjust their own settings and that only a doctor should make adjustments to therapy on behalf of the patient (Welcome and Policies & Guidelines: Please Read!). This attitude seems prevalent throughout the industry.

The doctors and technicians in this industry believe they are protecting patients from hard to understand reports and potentially dangerous CPAP machine setting changes, but what they are really doing is harming people and making it more difficult for newly diagnosed patients to endure through the transition process of successfully treating the disorder. Many people become discouraged and give up on their therapy. Failing to treat OSA leads to numerous health issues and is dramatically more dangerous for the patient compared to any risk presented by educating them on the proper reporting and adjustment of therapy.

My poll did indicate that some doctors out there are informing and empowering their patients with tools to manage their own therapy. Unfortunately, they seem to be the rare exception rather than the rule unfortunately. All doctors should be required to share this information with their patients to allow for informed decisions and better therapy potential.

We should not view this as a war against regular visits and collaborative efforts between a patient and their doctor. On the contrary, this should foster a movement of growth and enlightened trust between both the patient and the doctor. They should both fully trust each other and know they are both striving for the same goal: the improved health and quality of life for the patient by standing up for their rights and empowering them with the tools and resources that will grant them better success and happiness.


References
Dr. Westbrook, Phil. (2013) How common is obstructive sleep apnea. Retrieved from
http://www.sharecare.com/question/how-c ... leep-apnea

Online poll results.(2013) When you were diagnosed, did your Doctor/DME tell you about
options like a data capable or auto CPAP? Retrieved from viewtopic.php?f=1&t=86059&st=0&sk=t&sd=a&start=45

American Sleep Apnea Association. (2013) Welcome and Policies & Guidelines: Please Read!
http://www.apneasupport.org/welcome-and ... 21511.html

Well done blakepro. Really, really nice!

I was very impressed. Great job!

Looks good. Was it just an one-page position paper or part of a larger document?

I chose "other" because I was never officially diagnosed and I was already seeking a full data APAP machine before I discussed this with doc or DME.

I am self-diagnosed and self-titrated. When I began to suspect that the trouble I was having was due to sleep apnea (well, okay, when things got so bad I finally did something about it ) I asked my doctor to prescribe APAP for me. She was initially hesitant because she didn't know what APAP was and thought I needed a sleep study to determine an appropriate pressure, but I explained to her how it worked and connected her with Mark, the respiratory therapist at secondwindcpap.com, who reassured her I could safely titrate myself. Being the sort of doctor who fully supports her patients in taking charge of their own health, she kindly wrote the scrip. A full data machine was a must because I didn't intend to do a sleep study unless there were unanswered questions. And because my apnea is as simple as it gets, I still haven't had a sleep study. I did eventually get an alarm clock that has a one input EEG.