Having trouble with "elitism"

Bighungry69 wrote: ↑

Sat Nov 24, 2018 12:33 pm

I didn't realize there was a market for used equipment, seems common sense but I didn't consider it. If my machine doesn't work I will persue that avenue.

I understand the benefits of the data tracking ability, I also know that my dad has never needed anything beyond a basic machine and I'm hoping the same is true for me.

The stuff that I'm mainly referring to is comments like this, "Hey......ResMed......If you're reading......you're greedy, pathetic and disgusting for producing products like these."

As a newbie, I read stuff like that and think that I may have made a huge mistake with my purchase. Not trying to call anyone out or stir the pot, just trying to provide some perspective from a newbie.

It really isn't elitism. It is concern that people are sold a machine without the data that is often needed to make treatment successful. Lots of people quit because they never had the right settings and have no idea how to choose better settings. Without useful data, it is completely trial and error.

For example, my mom was diagnosed and started cpap back when machines had no data at all. Her machine in 2012 was an older machine with no data. Her doctor said she was doing fine, but she didn't really feel any better.

I got diagnosed in April of 2012, and got my first machine, one with full data. I had immediate success, some issues with the mask fit, but feeling much better right away. After I had my followup appointment with my doctor, I let my mom use my machine for half a night at her prescribed pressure of 10. I downloaded the data before I went to bed so that her data was by itself. The ahi on the screen said 3.4. Not awesome but considered good by doctors. I then looked at the actual data, the graphs. I was shocked. She had a cluster of 8 events in about 10 minutes that were all longer than 30 seconds. One was 62 seconds long! No wonder she felt like crap.

A couple nights later, we did another partial night with the machine set for 10-13 to see what it wanted to do. I printed both reports, and my mom went to my doctor who reviewed the reports and prescribed a new auto machine with full data, set for 10-15. She feels much better now.

Unfortunately, the Airstart 10 machine is basically the same hardware as the Airsense Auto, but it has reduced software. Why would a company do this? To make money selling cheap machines. They don't care that some people will quit shortly after their purchase. They are probably thrilled that some people then buy another better machine. The fact is that they know the data is useful, and there is no reason not to include it.

I do hope your machine works well for you. Unfortunately, you will have to go by whether you feel better or not. You won't know if your ahi is spread out over the night, or coming in clusters. You won't know if the events are short or really long. You may not know if they are obstructive events or centrals. If you need to adjust your settings, these are all things we consider when deciding what to change.

There is nothing elite about wanting every person to get a good, useful machine that will lead to successful treatment. I would honestly recommend a used S9 Autoset for about $250 than then newer Airstart 10. I have two of the S9. One is my insurance mostly covered machine. My backup / travel machine was purchased via craigslist.

Please remember that people are saying that the machine is substandard and the company is bad for releasing it that way. Nobody is insulting the buyer. We feel bad for you that the cpap industry has taken advantage of people this way. We try to help new people find a good machine regardless of their budget. We want people to have success.

This site is about providing people the knowledge to make informed decisions about their equipment and therapy then helping people make a success of their therapy.

If your purchase was an informed decision, you have no reason to feel regret. On the other hand, if you learned more information here after you made your purchase and now have regrets about your purchase, I am sorry that happened for you. But it is not the fault of the information; it is a matter of it being best to do the research before a purchase is made instead of after. That makes it less likely later to feel one has been tricked.

Our so-called elitist attack of the DMEs who take advantage of those unaware that their insurance allows them to have machines that constantly inform is something I personally participate in and stand by. The perception that machines that do not inform are somehow the standard and that machines that inform are unnecessary luxuries is the very lie we try to expose. Our position is that machines that fulky and constantly inform are now the standard and machines that do not do so are therefore less than standard. If anyone finds that position elitist, I disagree. I advocate standard care for all instead of allowing some greedy crutch salesmen to arbitrarily single out certain uninformed ones to get substandard care. That is the true position of elitism that I have the most trouble with, and it doesn't make sense even financially in the long run overall.

That said, it is possible for some to tweak pressure by feel without data when the problem involves remaining symptoms. You simply see if a slight increase in pressure over time makes the remaining symptoms better or worse or has no effect at all and then act accordingly.

It is always better and less stressful to fly with instruments available, but a careful pilot who can make out a fuzzy horizon can still have a successful flight.

I have a premium machine at this time. However, when I started CPAP in 1999, I had a plain-old "box," that did a lot less than the machine you're getting (remember, it was a 1999 machine). I did just fine on that machine! It was large, it was noisy, it had no leak compensation, no altitude compensation (not even manual), and if the water chamber cracked, the machine count not be used (there was no bypass).

When it's time to replace, I suggest that you go through your insurance and get a premium machine. Normal replacement time is five years, but - since you did not get this one through insurance - you can probably get a way with three (or even zero, theoretically). If you do the three year thing, you won't be in a hurry for a new machine, so you can put up with the delays. Also, at that point, you will have a spare machine on hand in case of problems.

Another viewpoint from a newbie,

I got the machine with all the bells and whistles because that is what my doctor ordered. The dme basically handed over the machine and a mask took a huge amount of money from me and expected me to make it work. For the first 9 days I was at a pressure that was from a sleep study done in reno at 5000 + ft when I now live in Phoenix, it was basically a giant expensive paper weight. It took a complaint filed with my insurance provider to get them to turn on auto mode even though the doctor had approved it, so the machine could do its thing. Still it wasn't working, my mask was making tooting noises all night I couldn't sleep, it was terrible. Then I found this place. Ordered a smaller frame and some fleece wraps for my mask, learned how to make my own mask liners and still learning new things every night. For example make sure you tie down your machine somehow so it doesn't fall off the nightstand. . Wish i had done my research beforehand but for now the forum has kept me going and encouraged me and if I am disparaging of the dme company well they treated me like dirt. At least I haven't named them publically.

Data-less machines are a relic of the broken medical system.

Bighungry69 wrote: ↑

Sat Nov 24, 2018 12:33 pm

As a newbie, I read stuff like that and think that I may have made a huge mistake with my purchase.

Well, yes, yes you did.

And that's the entire point of "stuff like that"... to keep newbies from getting screwed.

ChicagoGranny wrote: ↑

Sat Nov 24, 2018 12:10 pm

Bighungry69 wrote: ↑

Sat Nov 24, 2018 10:43 am

The machine will arrive this Wednesday

What's the return policy on unopened packages?

If you are still around, I would like to know the answer.

I want to say thank you to everyone who has provided me with their thoughts and insight. I'm going to use my machine when it comes in and if I have issues with it I'll start shopping around for a used machine with more features and keep this one for travel/back up. I know my dad has had major issues in the past when he had a problem with his machine and could barely sleep because he didn't have a back up.

I am looking for some additional input from the members here. How many of you didn't notice a lot of the major side effects of OSA prior to starting therapy? If so, do you think you were just accustomed to not sleeping well and just felt a general improvement overall after starting? The reason I ask is because I don't ever fall asleep unless I want to, I don't have headaches, I don't feel groggy all day (I probably cover that up with caffeine use though). I do however snore like a freight train and I decided to go for a sleep study after discovering the massive health risks associated with OSA. I suppose my main question is how common is it for people with minor side effects/symptoms to notice improvement after starting therapy?

I, for one, did not have any troubling symptoms that I noticed before hand. I am more productive after treatment than I think I would have been. I also snored, and my wife noticed I stopped breathing.
Jim

Bighungry69 wrote: ↑

Sun Nov 25, 2018 8:49 pm

I am looking for some additional input from the members here. How many of you didn't notice a lot of the major side effects of OSA prior to starting therapy? If so, do you think you were just accustomed to not sleeping well and just felt a general improvement overall after starting? The reason I ask is because I don't ever fall asleep unless I want to, I don't have headaches, I don't feel groggy all day (I probably cover that up with caffeine use though). I do however snore like a freight train and I decided to go for a sleep study after discovering the massive health risks associated with OSA. I suppose my main question is how common is it for people with minor side effects/symptoms to notice improvement after starting therapy?

Before my sleep study, I knew I had sleep apnea, but I didn't really understand what it meant. I understood that it causes sleep disturbances and wakes you up a lot. I didn't understand that it lowers your oxygen level, causes stress hormones, etc.

So, I felt I slept okay. Sure, a few trips to the bathroom each night, but I always have to go a lot during the day, so I didn't see that as unusual. I figured I was also getting older, so the minor changes were normal with aging.

After I started using cpap, I discovered many improvements:

fall asleep faster
fewer bathroom breaks
fewer wake-ups
no more morning headaches
I don't get grumpy as often
"Tired" is no longer my standard response to "How are you?"
I sleep much better in hotels (used to be a clock watcher)
energy drink usage way down
no more nightmares (usually being chased)
no more waking up choking and gasping, sometimes to the point of vomiting
fewer colds


Overall, I sleep better, and I feel better. I didn't realize how poorly I was sleeping because it got worse over time. But the sudden change during my sleep study showed me the clear difference.

Bighungry69 wrote: ↑

Sun Nov 25, 2018 8:49 pm

I want to say thank you to everyone who has provided me with their thoughts and insight. I'm going to use my machine when it comes in and if I have issues with it I'll start shopping around for a used machine with more features and keep this one for travel/back up. I know my dad has had major issues in the past when he had a problem with his machine and could barely sleep because he didn't have a back up.

I am looking for some additional input from the members here. How many of you didn't notice a lot of the major side effects of OSA prior to starting therapy? If so, do you think you were just accustomed to not sleeping well and just felt a general improvement overall after starting? The reason I ask is because I don't ever fall asleep unless I want to, I don't have headaches, I don't feel groggy all day (I probably cover that up with caffeine use though). I do however snore like a freight train and I decided to go for a sleep study after discovering the massive health risks associated with OSA. I suppose my main question is how common is it for people with minor side effects/symptoms to notice improvement after starting therapy?

I never had noticeable side effects from sleep apnea, either. I was a computer programmer for over 40 years, and that's a job that requires focus, analytical skills, and very close attention to detail to do it well. Never felt drowsy during the day, didn't have headaches, etc. On the other hand, my wife told me that in addition to snoring I was not breathing for scary amounts of time sometimes at night. And my blood pressure was creeping up a bit as well. My doctor suggested that I take a sleep study, and what do you know? Ended up on a cpap that I've used for about 7 years now. I don't really feel a lot different than I did before I started using cpap, but my blood pressure is normal and I'm not keeping my wife awake with snoring and apneas. So I think that on the whole I'm healthier, which is also related to increasing my exercise level after I retired and had more time on week days.

Just to add a few words to the discussion of having access to sleep data, that's been invaluable to me for tuning my therapy. It would have been blind luck to have gotten to the level I'm at now without being able to look at my sleep data and make adjustments to optimize it. Makes sense to me to have a cpap without data as a backup machine...you can do your tuning at home, and then just set up the non-data machine correspondingly and use it when you're traveling. That should work just fine.

Bighungry69 wrote: ↑

Sun Nov 25, 2018 8:49 pm

...

I am looking for some additional input from the members here. How many of you didn't notice a lot of the major side effects of OSA prior to starting therapy? If so, do you think you were just accustomed to not sleeping well and just felt a general improvement overall after starting? The reason I ask is because I don't ever fall asleep unless I want to, I don't have headaches, I don't feel groggy all day (I probably cover that up with caffeine use though). I do however snore like a freight train and I decided to go for a sleep study after discovering the massive health risks associated with OSA. I suppose my main question is how common is it for people with minor side effects/symptoms to notice improvement after starting therapy?

Hi I for one had no idea that I had sleep apnea. For years, I'd wake up coughing, which I attributed to post nasal drainage (lots of sinus issues when I was younger). I learned to keep a cough drop/candy in the back of my throat to help with the coughing. What I think I was doing though was forcing the tongue forward holding the drop in place, reducing the apneas. The only one I was sleeping with had four legs & a tail, and just wanted a warm body, so I don't know about snoring.

When I was diagnosed with other issues, my doctor told me that sleep apnea was a common co-morbidity and suggested I get tested. I had never even heard of sleep apnea, but was willing to be tested. (This was 2010)

Now, referring back to your question regarding why people prefer new patients get a data capable machine vs a brick....

Once tested though, I had an AHI of 19 and started with a brick (Resmed S8 - Escape). Pressure was set at 15cm H2O. I used this blind for about a year and a half. I did have aerophagia (gas in the stomach) once or twice a month. I didn't like not knowing how things were going, and purchased a Resmed S9 and started checking my data. I found that my pressure was set too high. I've set my pressure down to around 10 where ResScan was telling me I needed to be. I've moved from ResScan to Sleepyhead, and my average AHI for the past year is 0.37 and my pressure average is 10.3cm H2O.

It didn't take me too long to adapt to sleeping with a CPAP. I had experience sleeping in a military gas mask for extended periods of time and it didn't reach the stress levels of the military service. I don't really recall a day where I sprung out of bed feeling different, but more of a slow and gradual improvement overall.

Hope this helps!

-Bill

I was diagnosed in 2012, given a brick set at the highest setting, I did not comply with therapy. The first "symptom" that I noticed was going into AFib, Had I had a machine that would have helped with my therapy by allowing me to see my data, therefore able to adjust my pressure to fit my needs I might not have given up on the whole process. I now use an ASV machine but my max pressure settings are still not as high as what my first settings were. I am happy to say that I have not been in AFib since becoming PAP compliant!

For me the key to my compliance started only after taking therapy in my own hands, directing my treatment by being knowledgeable about it. I was able to do this by having data available and help from members of forums like this one, then letting my Dr. in on my findings. I got really lucky with a sleep specialist who would listen to my input after six sleep studies, the ones that I was only able to seep for a half hour in!

Good luck with your journey, stick with it!

Bighungry69 wrote: ↑

Sun Nov 25, 2018 8:49 pm

if I have issues with it I'll start shopping around for a used machine with more features and keep this one for travel/back up.

Good plan. Don't forget that members here can help you find a good used machine at a reasonable price.

I was first diagnosed with sleep apnea in 1996. I don't know how severe it was because I never saw the results of the study. I knew I had a badly deviated septum and opted for surgery at that time. This alleviated many of my symptoms (daytime sleepiness, snoring, etc.) for several years. Shortly before I retired in 2013, some of the symptoms began to appear again (daytime sleepiness and stop breathing when asleep). While in the hospital in 2014, the nurses noticed my blood oxygen would drop when ever I slept. My doctor ordered an oxygen concentrator for me to use when sleeping until I could get tested and start treatment for my sleep apnea. The doctor that over saw my last sleep tests ordered a fully data capable machine for me. From what I have seen when visiting them, they always order variable pressure, full data Resmed machines for all of their patients.