Doc told me most people aren't interested in data

My sleep doctor said the same thing. I tried to show/demo Sleepyhead to him, however his eyes kind of glazed over while I did my little dog and pony show. Too bad... he's the one missing out My elderly MIL who's on CPAP wouldn't know an SD card from an STD.

You have all missed the main point.
Most doctors think their middle name is GOD.
Most patients believe the same.
Why would they question what GOD tells them.

My BIL seldom asks his doc a health related question and never listens to the answer.
I recognized his sleep apnea and escorted him to doctor visits over a two year period, sharing with the doc MY diagnosis.
BIL said he had a sleep study years ago and did not have SA. What he actually had was a Holter Monitor to diagnose his AFIB, which was one of many clues to my diagnosis.

Now that he has a CPAP, he has used it 2 days out of 30 according to the info on the screen. He is computer phobic and needs lessens regularly on how to play his boom box. At 80 he is not sure he believes CPAP or vitamins can really help anyone or that 50+ years of smoking could really hurt anyone. The only good night on CPAP he had was when I spent the night at his house and put his mask on and tucked him in. The next day he said he never felt so rested and energetic.
He discovered that his nasal mask felt more comfortable if only one of the side clips was hooked. He never looked at the data indicating his AHI was still 26.

When first diagnosed, I was working, and only had time to keep my notebook of daily summary data.
Now I'm working on loading my data weekly into Sleepyhead, and taking a quick look for trends.
Even my eye doctor understood my notebook. I only shared SH with the sleep doc, who was enthused!

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.

BlackSpinner wrote: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.

The respirology technician at my service provider treated me like a dolt. Admittedly, I was then learning about these things, but he didn't mention the SD card in my S9, and later I learned that he had never heard of SleepyHead. He just assumed I would passively listen to all he had to say and accept his advice on all things. In addition, he has a financial incentive to try to sell me this mask or that machine, depending on what kind of wholesale deals his company can strike with the manufacturers.

Now that I've educated myself better, both by following this board, and a lot of googling around, I feel better prepared to deal with him on more of a more equal basis. I have discovered an online source in Canada which sells masks for roughly half the price these people want. (I won't even start my rant here about how something that would normally retail for maybe $30 at Walmart costs 5x or 10x as much if it is "medical supplies" and requires a prescription).

I have my first appointment with the respirology doctor next week since starting this thing, and I'm looking forward to seeing his reaction when I arrive equipped with charts, graphs, and the SD card with the latest data on it.
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Addendum to this, added later:

I have a friend on CPAP who doesn't know his AHI, hasn't a clue how to do anything with the machine, and is happy to just go to the clinic once in a while so they can tell him he's doing OK. Nothing wrong with that, I guess. I'm just the more obsessive type, and I like to have some control over my own health and therapies. It takes all kinds!

echo wrote: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.

Or as my primary care doctor told me once when I took detailed notes to his office everytime I went to see him; "There's no need to micro-manage the situation; why are you so detailed"? My response was I am that way because I have nobody to do it for me but myself. I see nothing wrong with wanting to keep detailed notes and if I get a new machine once I complete my upcoming sleep study I too want a data capable machine; not a brick and will probably have more questions to ask when I attempt to keep track of my own data.

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

old dude wrote: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.

Yup. You're right. It's exactly this prior experience with diabetes that taught me to use my sleep doctor as an information source but not as the sole decision maker with my therapy. The state of diabetes treatment within the medical community is a disgrace.

Stevoreno_55 wrote: 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.

chunkyfrog wrote:BUT WE NEED TO CHANGE THIS!

+1

That is medical professions responsibility, and I don't see that happening.

Stevoreno_55 wrote: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

BlackSpinner wrote: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.

+1, my thoughts exactly.

People can't be interested in something they know nothing about.

Some, though, may not care about data because their therapy is going so well. So it's not all bad.

We are in the minority, but that's OK.

The point is that people who (1) want to know about it and (2) would benefit from knowing about it should be ABLE to know about it. Not everyone cares, and not everyone would benefit, though. And that's easy for us to forget, I think. Either way, it should be standard to have data and for some teaching to be done. That's the only way it will be available on any meaningful scale so that those who need it can get it and use it.

In my opinion.

When my brother was in town over Easter weekend, I showed him sleepyhead and my results; I had told him about all the info I could get from it, and he was amazed so wanted to see it. A family friend who was at the house wanted to see it too; she recently retired and had worked in the sleep center at my clinic (no idea what her job was but it wasn't in the sleep study section). She noticed that I had upped my lower pressure by 1cm. I told her I had done it the week before after reading these boards for more than a month, read the clinical manual, and was advised here to try 1cm, going half a cm at a time for a couple days each... and that's what I did, knowing that if I wasn't comfortable I could set it back immediately, also that I had no intention of going any higher. She said "NO, YOU CAN'T DO THAT!" I explained it again, adding that I learned nothing about using cpap and all that goes with it from the clinic, I had to learn about things like mask liners and how it takes a long time to adjust, etc from the boards. Then she said, "well, I think you should talk to your doctor about it." I told her I would do that the next time I see him. I have not seen him since then, and I don't care if he likes it or not, I'm more comfortable this way, and I have nice low numbers. She did not tell me why I can't do that.

My siblings both heard the conversation and neither one of them has suggested that she might be right, or reiterated that I ought to talk to the doctor about it. They know me too well.

Stevoreno_55 wrote: She is recommending a ResMed S9 Elite or an Autoset?

Take the Autoset, it has Cpap mode and Auto mode, it's like getting two machines in one.

old dude wrote:

BlackSpinner wrote: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.