Doc told me most people aren't interested in data

[Sclark08]

I think what your Dr means is he hopes no one is interested in sleep data cause he sure isn't!

[old dude]

Considering that most patients are barely shown how to USE their cpap machine it is not surprising they don't know or are not interested. Unlike diabetes education, xpap education threats patents like mushroom, shovel manure on them and keep them in the dark.

Many, if not most Type II diabetics would be far better off if they didn't get the standard GP/ADA education, but rather sought out information on their own. So many diabetics are taught that the best diet to follow is a "balanced" diet, and that an A1c level under 7% is just fine. Both of these fallacies are a sure-fire bet to serious complications yet docs put patients out with this information every day. It's almost criminal IMO.

However they are taught how to monitor their levels, how to read the meter and what to do if their readings are too high or low. No body tosses a meter at them and tells them not to worry about reading the data and bring it to the doctor in 6 months. Plus for most people just attempting a "balanced" diet is a great beginning.

Perhaps, I never thought of it that way. But it isn't the way to deal with diabetes by any stretch. It takes very low carbs, moderately high protein and high fat.

Far from "balanced" as the ADA would have you believe is optimum.

[Stevoreno_55]

My DME's RT says once my study has been done and an order for a new machine has been approved; depending on what my new pressure will be she will recommend a data capable machine; not a brick. She is recommending a ResMed S9 Elite or an Autoset? with HH and HHose; does either one of those machines come with the software necessary to track your results or will I have to purchase the software separately? Will the software necessary to track my results be by ResMed or by another company? If the software isn't by ResMed is there another brand of choice?


Stevoreno_55
MS Gulf Coast
05/08/14

Not only does the software not come with your machine even if it is data capable, the manufacturers try their best to keep you from getting it. ResMed won't even sell it to you at all, only to a doctor or DME. One of the members here wrote Sleepyhead which works fine and he gives it away. ResScan which is ResMeds program can be had for the asking here on the board, just don't ask how we got it!

Jerry

Well since ResMed won't sell the software to patients should I shift my attention to another Philips Respironics machine? Something like a P.R. DS460S? Can you purchase the software for a Philips Respironics machine? If my DME is pushing for a ResMed machine and I don't know why unless they get a better return from ResMed than Philips Respironics would my DME provide me with the software at no cost? This is a new road for me; having to consider purchasing software to track my sleep data.



Stevoreno_55
MS Gulf Coast
05/08/14

[Julie]

You can download software of different kinds for different machines from various people on this forum... check out info below any of Pugsy's notes, do a forum search for 'Jedimark" (he designed SH for PC's and Macs) and look on the main page for more.

[chunkyfrog]

It's not unlawful (not even a crime!) to have and use the software; it's just "company policy".
Since they limit sanctioned distribution to those least likely to use it for our benefit,
I consider it a minor civil infraction, necessary for the sake of my health.
My conscience is clear.

[Jay Aitchsee]

Well since ResMed won't sell the software to patients should I shift my attention to another Philips Respironics machine? Something like a P.R. DS460S? Can you purchase the software for a Philips Respironics machine? If my DME is pushing for a ResMed machine and I don't know why unless they get a better return from ResMed than Philips Respironics would my DME provide me with the software at no cost? This is a new road for me; having to consider purchasing software to track my sleep data.

Just add your name to this thread, viewtopic/t89670/ResScan-Software-Download.html , to get ResScan, the software for ResMed machines. It's as easy as that.

[Kiralynx]

Five and a half years ago, when I got my diagnosis, a lovely lady directed me to CPAPTalk. She told me, "I think you'll like this Forum. The people here aren't your average CPAP users, but they ARE what every CPAP user should be."

Without this Forum, I'd probably have been a CPAP failure, because fer darn sure, I didn't get any help from Apria with it. (Except for the RT who left shortly afterwards, that is!)

Without this Forum, I wouldn't even have known data could be accessed!

My niece accuses me of always wanting to be in control of things. Well, why not?

I've posted this before, but....

You don't tell a person with hypertension to "just take your medicine and everything will be all right." The hypertensive needs to monitor their pressure several times a day.

You don't tell a diabetic to "just take your insulin, and everything will be all right," because it might not be! I have diabetic friends who test upon rising, before breakfast, two hours after breakfast, before lunch, two hours after lunch, before dinner, two hours after dinner, and at bedtime, and at any other time they're feeling off. The same bean counters who want to limit my access to MY medical information are trying to claim that once a day is enough.

Without data, I would not have known that my settings were CAUSING central apneas. With data, I was able to see what was happening, discuss it with my doctor and get my settings changed to the ones I needed. Luckily, my doctor was willing to listen.

I have said this before, also, and I will say it again: I live in my body. No one knows it better than I do. I may consult a medical practitioner for advice, but no one, and I do mean NO ONE tells me what I can or cannot do.

That includes getting the information I need to make informed decisions about my health!

[Stevoreno_55]

Well since ResMed won't sell the software to patients should I shift my attention to another Philips Respironics machine? Something like a P.R. DS460S? Can you purchase the software for a Philips Respironics machine? If my DME is pushing for a ResMed machine and I don't know why unless they get a better return from ResMed than Philips Respironics would my DME provide me with the software at no cost? This is a new road for me; having to consider purchasing software to track my sleep data.

Just add your name to this thread, viewtopic/t89670/ResScan-Software-Download.html , to get ResScan, the software for ResMed machines. It's as easy as that.

Just done it; thanks.


Stevoreno_55
MS Gulf Coast
05/08/14

[Drowsy Dancer]

Stevoreno, you oughtta give SleepyHead a try too.

[Captain_Midnight]

Sadly, I suspect that what the doc told the OP is correct, most folks don't care about data.

BTW, my pulmonologist is amazed when I print out a brief compliance and therapeutic effectiveness summary and bring in for my yearly visit.

.

[zoocrewphoto]

I get told by friends & doctors that I'm too "obsessed" with charting and tracking my data (and not just for cpap). Ugh. As if the stick-your-head-in-the-sand approach yields such excellent results.

Back when I started cpap, I wanted to know if it was making a difference in my high blood pressure. So, I made a database, and I track my my blood pressure readings 2-3 times a day as well as my sleep (total hours, hours with cpap if less than the total hours, and my impression of the quality of sleep). My old doctor didn't care much about it. When I was having sleep problems due to hip pain, I reminded her that my chart clearly shows that my blood pressure is normal with medication AND good sleep, but lousy if I take the medication and have lousy sleep.

When I switched doctors, I went in with a printout showing the past 2 weeks with poor sleep and no medication. I had let my prescriptions run out and didn't want to return to the old doctor. I also had the summary graph that showed my cpap usage which was basically a bunch of partial nights, with good ahi, but clearly not enough usage. I explained that when I started cpap, I did really well, but I was already on blood pressure medication, and I had a feeling that getting that back under control would help my cpap. She was concerned with cpap usage, but willing to work on the blood pressure first and see if that sorted it out. I went back in two weeks with much better blood pressure numbers and double the cpap usage. Some other improvements too. I was very glad to have this new doctor. I was also pleased that she asked for copies of my database printouts for my record there.

Years ago, I would have done anything to try and get my blood pressure readings as low as possible at my doctor's appointment, just to make it look good. I have since learned that it is better to be as honest as possible, as they can help us more if we give them all the info possible.

[zoocrewphoto]

Will the software necessary to track my results be by ResMed or by another company? If the software isn't by ResMed is there another brand of choice?
Stevoreno_55
MS Gulf Coast
05/08/14

No software will come with your new machine, the newer v.9.5 Sleepyhead will work fine ... you can find it at Sourceforge.com. ResMed's sleep software ResScan will work with your machine but I'd avoid it in favor of Sleepyhead.

I actually like Res Scan much better. I like the graphs and summary much better.

[JohnBFisher]

When I saw my doc (sleep study specialist- neurologist) for my followup he was pleasantly shocked that I brought my card in and that I'd been tracking my data on Sleepyhead. He told me most people don't do this. The way he said it and based on his reaction to my interest made me think I was his only patient who did.

I'm surprised!

Just thought I'd share....

Sadly, your doctor is correct. And it's not just with sleep issues.

There are a ton of diabetics, who do not want to figure out how much insulin they require. They just want a set amount they should take. Unfortunately, life does not work that way (always consistent).

There is plenty evidence that an involved patient has better outcomes with chronic conditions. So, definitely keep up the good work.

[70sSanO]

I have to say that it is this forum that has always pulled my rear out of a bind, not the doctors, when my numbers started going tilt. The people on this forum are first rate, even when personalities arise, at the end of the day everyone here should be applauded, but especially the sponsors of this site. No one will ever know how many lives have been saved because of a response or some insight from this forum.

My doctor who has sleep apnea didn't even know this forum existed. I showed him my reports and told him how to get the software and I think he gets to see the real everyday side of therapy and not just the clinical research studies and the statistical side of the medical profession.

How to change the medical profession? Have them come here are really see xPAP through the eyes of those who live it on a daily basis. I would be willing to bet that most of those doctors, if they were honest, would have to admit that there is advice given on this forum, they would have never thought of; and that advice is making a difference in the the non-clinical real world.

John

[The Latinist]

I'm going to my DME for a "mask fitting" appointment on Monday because my current mask just isn't working for me at higher pressures. I plan to go armed with leak graphs and summary data. We'll see how they respond. I'm guessing that they won't be enthused about my level of knowledge about the effectiveness of my treatment, but I'm trying to keep an open mind.

I will also bring my summary data to my follow-up appointment with my pulmonologist in June. How he responds to my concerns will tell me whether I want to continue keeping him (and my DME) involved in my settings once my compliance period is up. I'm honestly starting to wish I'd purchased my own machine outright to begin with...