Does your doctor/DME know you're reading data?

I am going to doctors since the beggining of my adult life, complaining about fatigue, dizziness, weight gain, tachycardia, insomnya, depression.
None of them haven't ever gave me even a clue about apnea. I discovered it by myself. Only needed the doctor to write a prescription for a sleep study.

archangle wrote:didn't want to get into the "nutjob patient" category.

There is a fine line between an educated patient & a "nutjob" patient (at least to the medical community) & one must constantly labor to stay out of the latter.

Plus, they just don't want to spend the time required to look at it as closely as you will.

As good as any medical professional may be, they will never be as concerned about your health as you.

Very true Steven. The only contact I've had with my actual sleep doctor has been a couple of 5 minute conversations. I'm pretty sure a visit would only be about 10 minutes long too. It seems that more and more, doctors are too pressed for time to actually investigate anything fully. With my GP I sign in, take one of those coasters that beep and flash like at restaurants, and when it goes off, I end up waiting in an examination room for about 30 minutes. He comes in, goes over how things are doing, spends about 5 minutes checking vitals or other areas of concern, talks about his "treatment" for me, then I'm kicked out the door. There is little room to actually discuss alternatives to treatment or his justification behind them.

I came about sleep apnea because of quick onset heavy fatigue with a sudden drop of body temperature by two degrees. I had to fight to have any blood work done, then fight again to investigate my thyroid. He kept saying it was all due to my blood pressure and changed meds on me. It still didn't help, that's when he asked about my sleeping. If I hadn't have pushed, I'd still be undiagnosed sleep apnea, and probably on much heavier blood pressure meds. Half of the problem is the allowed time insurance will cover. Doctors are so crammed with patients, it's almost an assembly line. Hello, let me check your vitals. Ok you have XYZ and need to go on medicine or the rest of your life. Here's your Rx. Be sure to come back in 6 weeks so I can make more money off of you, oops, I mean check up on your progress.

Speaking of which, I've changed my diet to a more fruit/veggie based diet, stopped drinking coffee, and now my blood pressure is under control without any meds. I was averaging about 145/95 as "controlled" blood pressure on a tri-med pill. Since changing my diet, I'm averaging about 125/80 without meds. Plus I'm down about 10 lbs. All because of my nutrition!

I'm not sure how much attention the 2 DME's I have used paid to my reading data and adjusting settings. My sleep doc is not only fine with me reading data, when I wanted to try some changes to settings after the first month, he gave me a pressure range to work within. When I switched to a bilevel last spring, he told me to call if I needed help changing settings.

I've been printing out the reports and taking them to the doctor.
I doubt the DME would like that. They probably would charge my insurance company and exorbitant fee for doing the same.

Before I even got my machine almost 3 years ago I stopped by here first and got educated - original DME tried to give me a S8 but not Autoset like I had my doctor write the Rx. I refused it - think they were surprised that I noticed it did not say the magic words "autoset" on it. First thing I did when I picked up the Autoset a week later and brought it home was to get into the clinician menu and get rid of that wide open 4-20 and changed it to 8-12. about 2 months later when I went for my follow up, the Dr. noticed the change and asked about it - I confessed to changing it and gave him my reasons why based on the copy of yes, the full sleep lab testing results that I had in my hands and what I leartned here on cpap.com. We had a good lone discussion about how patients can more easily adapt to CPAP. Now when I see him once a year we take a peek at the charts, look at the averages and spend time talking about other mundane stuff. Poor Dr. got named sleep lab Dr when the other guy left so he admitted he was not quite up to speed on things OSA. I think I educated him. we talk about having access to full data and not just compliance, mask options and how that is a hold up to most compliance issues - I hate that word compliance. I have turned him on the PurSleep aromoatherapy, Pad-A-Cheek. I'd like to think he listens more to his patients and offers some suggestions to help them along based on what we talk about.

In the meantime my original DME is heading to jail for medicare billing fraud so I found another local guy and stop in once in awhile for supplies on my time - they wanted to hook me up with automatic delivery - uh no, I will use you for items that I cannot find cheaper elsewhere and definitely not until I have met my deductible. Picked up a S9 autoset online and use the S8 as my travel machine now.

Best thing is I have no need for a DME at all now really. My machine was never a rental through my great insurance and I have owned it outright from day one. Insurance covers my supplies at 90% after I hit my medical deductible. Not even sure if I really need the sleep doc either

Last week I had to see sleep dr for new RX (insurance requirement). I haven't seen a doctor since I got software and tweaked pressure and am now below 1.0 AHI. I told new dr I had software and had tweaked the pressure. He did not give his entire endorsement to it, but didn't chide me for it. He had additional suggestion that he felt may get the AHI close to 0. I was reluctant to let him know I read, interpreted data, and made changes to CPAP since I've heard of many doctors who really don't like it. Fortunately, I have found someone who will work with me on it.

The cat will be out of the bag the first time I see my sleep dr. after my tests. I have had my machine 17 days and it has only recorded events on 5 of those days. I have taken it back to the DME and was told it wasn't recording because the leak was too high. Now my leaks are down and it still doesn't record. It records pressure, leaks, etc. just not events. I unplug it everyday because I read here that could be the problem. The times it did record, the numbers were as bad or almost as bad as without cpap. Thanks to SleepyHead and the User defined flags, I can see that events are really occurring. Last night my O2 was at 90 or below for 15 min. SleepyHead calculated events for that time frame, but ResMed recorded 0 events. I am trying to get an autoset as a loaner while they figure out what is wrong with my machine. Without the knowledge and encouragement of this group, I would think everything was fine and my SA was miraculously under control. Now with my SH graphs in hand, I can advocate for myself and get a functioning machine set at the right pressure. Thanks everyone.

Heck

I flat out told my doctor that I was purchasing a Resmed S9 for the sole purpose of reading the data so I could follow more therapy more closely. He was pleased to hear that.

I belong to Kaiser Permanente (Denver CO area). Since they're an HMO, I originally received a Resmed S8 Escape. Fair enough. I used this machine for 1 1/2 years with some success, and some problems. I purchased a pulse oximeter, and it appeared that I was still having issues with excessive (to me at least)O2 events.

I decided to purchase my S9 out of pocket (around August) and started shopping online. I found the best price (around $1,000) and established an account with them so I could have my prescription sent to them in and purchase the machine on my FSA card In January.

When I contacted my Dr, he was more than willing to send my prescription to them, but he also directed me to their DME (Apria) and stated that the S9 was their standard machine since early 2011.

Long story short, in January I purchased my S9 Autoset from Apria and for about $200 less than the price offered online. This I understand is the contracted price for Kaiser purchases, and I was responsible for the entire cost. For this cost, I purchased the blower, H5 heated humidifier, and a Climateline hose.

I found that my original prescription was for 15 cmh20, and when I used the autoset feature, my pressure is 10~11 cmh20, and my AHI is less than 1. I am sleeping better, and look for incremental improvements over time.