Are my expectations off?

[Grolff]

Is it wrong for me to expect my CPAP doctor to be reviewing the data from my CPAP machine? I recently questioned him on this and he got really annoyed with me. He does not make any effort to read the data off my machine or send me somewhere where they can produce a report for him to read. Every time I go visit him he just simply asks me how I feel and that is about it. I however want to look at my graphs, see how my compliance was, see what titration was used(APAP AutoSet machine), see how many episodes I had etc. All these CPAP manufacturers have software the doctors can use to grab the data off my SD card. I don't see why I can't just bring my card in and have them pull it up. Even keep a record of it. Is the data off my machine not important? What are your thoughts? Whats does your doctor do?

[Janknitz]

Welcome to the world of CPAP. Your doctor made his money off your sleep test and diagnosis. He doesn't make any money reading your data and really providing good quality care. Therefore, he doesn't bother. What a loser! Sometimes when a doctor doesn't look at your data, he or she will claim that the data is not useful or accurate. Translation "I don't want to be bothered, go away".

There are good sleep doctors out there who DO look at data and who do care. Your best bet is to find one who will be collaborative in your care and leave the money grubber to patients who don't care either.

As for doctors having software to read your card, some do, but consider that there are at least 4 major manufacturers and they all have expensive and proprietary clinical software. Unless your doctor specifies the brand of machine he would like you to get so he can read your data, he may not be able to read the data from your card himeslf, but a good doctor will appreciate you bringing in your own printouts so that he can review them with you.

[xenablue]

My sleep doctor (neurologist) is very interested in my data, however I've seen her only 3 times, the last time at six months after Dx. I had a wad of paper printouts of all my downloaded data, which she spent some time poring over, asked if I could leave the summary reports with her to include in my file.

She told me she didn't need to see me on a regular basis, as she is confident I'm monitoring my OSA and therapy data capably. I am free to call her with an questions I have, or to make an appointment if I feel the need to see her if it seems my needs have changed.

My neurologist doesn't have the software to read my data, which is something I found out before going to see her at the six month mark, so my decision to print out everything was a good one.

I am happy to not have to see her regularly unless necessary - I already see half a dozen other doctors at least every 6 months, but knowing she is interested in my health and has an 'open door' policy is fine with me.

I agree with Janknitz - your doctor leaves a lot to be desired. It seems like he doesn't care because he possibly wouldn't know what to do with the data anyway. No, I don't believe your expectations are off - I would expect my doctor to be interested in more than if I just feel better. Just 'feeling better' doesn't mean your CPAP therapy is working at its full potential for you.

If you can, find another doctor who does care. If possible, monitor your own data and take print outs with you to your appointments.

Cheers,
xena

[kteague]

Some doctors rely on the DME to read the cards for compliance and/or treatment data and report to them. I've had docs who did it at their office, and had one who used the DME. I don't have an issue with that, as long as they are interested in seeing the data. Don't see it as any different than docs having any other tests taken and reported from a source outside the office.

My most recent sleep doc has been VERY interested in my reports - I generally printed them out at home and took them in, and I was mindful to not be overwhelming with them. Just printed a summary and a very few night's data. Periodically she did ask me to bring my machine in to test it and do their own reports. Doctors seem to be on really tight time constraints these days so I'm guessing dealing with detailed discussions would make most docs want to moan at the prospect. I understand that. I do NOT understand them not caring to even see at least summary reports, then maybe details if there is a continuing problem with the therapy. That to me is a reasonable expectation. When I was with a doc who didn't value machine data, I chose to get it and check it on my own. Got more guidance here than from that doc. And it's cheaper.

[jzap]

I guess this topic isn't as unusual as I thought it would be, as there are two threads on this topic on the first page. The other is by "tetragon", "my last visit to ..."

So rather than start a third, I commented on tetragon's thread:


"Funny, I was about to ask a similar question.

"My sleep doc doesn't want to look at my data. He said he doesn't have the capability to download the SD card.

"Well, he may not be able to download the card, but I certainly can (Thanks, Pugsy). I told him my AHI is running at 14.4 (CA 2.4, OA 3.3, H 8.7). He said I shouldn't be too concerned after only two weeks, because its just a number, and I should just go by how I feel. No follow-up for 6 months unless I "run into a problem".

"I think I need to bump my pressure from 8cm. I'm planning to go to 8.5 and see what happens. If I don't get more support at the next follow-up, I may need to go shopping too."

[greatunclebill]

in all fairness, let's not forget that sleep doctors were diagnosing sleep apnea and treating it with the how do you feel philosopy long, long before the relatively new data cards. if they are comfortable doing it their way, that's their choice and it is neither right or wrong. if you think it's wrong, it's easy to find a new doc if you can find one that does it your way and not his way. corporations built the data machines with sales in mind, probably without consulting alot of doctors. doctors didn't build the machines and probably didn't ask for them. nothing says they have to trust or even believe the one dimensional data or the program that reads it. not sayin', just sayin'.

[Sir NoddinOff]

There are all kinds of doctors just like there are all kinds of people. Some just want to give you the glad hand and scoot you out the door while others are more interested in your opinions and getting in depth with your treatment. I don't think there is much you say or do to change a lazy doctors attitude other than finding a new doctor that addresses your concerns. I've been doing that my whole life and it's no easy task to change horses in mid-stream, still it's a great thing when you find a simpatico doctor that will listen to your concerns (and read your machine data).

[wm_hess]

My doctor doesn't look at the card data either. I take my laptop that has sleepyhead & Rescan to the doctors office. We can view any day, and any summaries he desires. It also lets him know that I'm watching my therapy as well.

With the advent of electronic records, my primary care doctor doesn't seem interested in hard copies any more.

-Bill

[zoocrewphoto]

My doctor prescribes the Resmed S9 autoset because he uses Resmed software and wants to be able to see the data abd make adjustments as needed. He asks that we bring our data card with us to appointments so that he can look at the data. He was thrilled when he learned (from me) that we can get our own software and view the data.

He accepted my mom as a new patient after she used my machine for two partial nights, and had data that showed her old prescription was not working well for her. He looked at her old sleep study (which recommended cpap of 10) and my two printed reports showing 4 hours at 10 and 4 hours at 10-13. He used that to prescribe a new apap with 10-15.

My doctor also has sleep apnea himself, so he knows personally how it affects us, and how it can be challenging to use a machine. He's an older doctor, but is happy to use technology. I think the assistant does the actual downloading for him, but he is happy to use the data. I am really pleased to have a doctor who insists that machines have full data. With this capability easily available, there is no reason not to have it. Our health is worth more than the small difference in cost. And it sure makes the treatment a lot more successful if you can check on it and adjust it if it is wrong, or the person's needs change over time.

To the original poster. What machine do you have? Your doctor may not view the data, but if it is there, YOU can.

[KEQ5]

I'm going in for my 6 week follow-up visit next week. They say that I'm supposed to bring in my machine so they can read the data, but I'm expecting something between 30-60 minutes with a PA/RT to go over the data to something as short as a 5-minute "how you feeling?" visit.

Which would bother me a lot more if I couldn't read my own data in Sleepyhead. But since I can read my own data and know how to tweak my settings, I view the doctor visit as more of a sanity check and a chance to ask questions.

[MadMobius]

I just got my machine yesterday. Met with the doc first then drove out to pick up the equipment that they had already perscribed. First night and I felt GREAT this morning. I didn't even sleep a full 7 hrs and woke up without any snoozes or curse words...

My Doc wants me to bring the equipment in and go over everything with me at the 5 week mark. It sounded perfect since I've read in these forums that it can take up to a month for people to really get used to their machines or feel better that sort of thing.

[Grolff]

I use an s9 autoset as well. I was able to download the software from some forums, but I could not find it from the manufacturer without paying for it. I am no expert at understanding the data though. I want my doctor to look at it and interpret it for me, atleast the first few times. I was going to start a new thread to see if anyone new a good CPAP doctor in the Atlanta area that views the data and preferably uses ResScan.

[cherylgrrl]

I actually think you would be better off if you started looking at your own reports and forming questions. This forum has lots of support and help. In my case, when I went for my 30-day followup appointment after getting a CPAP machine, the doctor's office asked me to bring my chip. They took it when I checked in, and when my doctor came into the examining room to speak with me he had a 1-page summary printout with him. He seemed pretty pleased with my results, as my AHI of 107 had come down to between 4 and 16. However, I knew from looking at my results each day that there were periods of about an hour at least every other night where my AHI went up to 30 or 40, with more than half of the apneas being centrals. That's still pretty bad sleep apnea! I asked him what the health risk to me was during those periods of time and he agreed it was like someone with moderate untreated sleep apnea. Translation: I could still have a heart attack or stroke during those times!

He agreed that was dangerous and prescribed a new sleep test so I could get a VPAP machine. Now my AHI is 0.0 most nights. That's a happy outcome, and it wouldn't have happened if I had relied on the doctor to interpret the report results. So now I am anticipating my 30-day followup with the new machine and formulating my questions. These aren't applicable to you, of course, but these are the kinds of questions I'm formulating based on looking at these graphs:

1. Why are maximum pressures higher, e.g., median about 12 with VPAP, instead of about 9 with APAP?
2. Why did tidal volume increase with VPAP? E.g., median 280-360 with APAP, 300-480 with VPAP.
3. With VPAP, why do I sometimes have apneas or hypopneas (e.g., .32 AHI on Sept. 2, 4.43 on Sept. 3, .83 on Sept. 6 but 0.0 on other days) Shouldn't it always be 0 or is this probably a mask leak or other problem?
4. Why the difference between Target Minute Ventilation rate and actual Minute Ventilation rate? Medians are close, but actual for 95% and maximum is quite a bit higher than target. Is this a concern or to be expected with VPAP?

Bottom line, I recommend you spend some time on your own learning as much as you can. I believe you will get more value from your doctor's visit. I also like the advice another forum member gave about bringing your laptop to the doctor appointment. I think that would be much more effective than trying to print out a whole pile of reports!

[archangle]

Welcome.

Unfortunately, you may need to monitor and manage your own therapy. Your doctor is probably not giving you the best care.

However, if you're using your CPAP all the time, and not feeling bad, odds are very good you've made enormous improvements in your longterm health outlook. "Stick CPAP on him and forget it" is the old way of doing things, but it's saved or improved a LOT of lives.

You're doubly lucky that you ended up with an excellent auto CPAP machine. It will give you lots of data that you can lean how to read and monitor yourself.

[purple]

Truth is, it is also very likely that the numbers on the report from the SD card are great, and the patient, (like me for example) is still not getting enough of the right kind of sleep. Asking you how you feel is an important measure of things are going. Just if they read the data, and I also tell them I am not feeling good, then the doc is in a better position to suggest what settings should be on the machine.

Once a doc told me that while I thought I needed more pressure, I should focus on getting rid of leaks instead of being concerned about a higher pressure. In fact I might do with a lower pressure. On some levels, the doc was right, I should be concerned with leaks, but I needed a higher pressure which helped to cause the same leaks.

I am troubled when sleep doc seems to think that I can do without adequate sleep therapy treatment for months, until I come back in to see them. I realize they are thinking adjustment period. I also think doctors believe that they are more easily and promptly available to a patient than they ever are.

Perhaps we could have a person who works in the sleep field who can define what events, symptoms, happenings should cause an individual to call his sleep docs office and say, "I need to see the doc, PDQ," versus "never to bother calling the doc when this is happening?"