Wise to tell the Doctor?

[Gabe]

Is it wise to tell the doctor about the software you view,about this forum, setting your pressures yourself and the information you gained from this forum? Maybe some or maybe all? I have an appointment next week. Just curious.Thank you.

[xenablue]

It's up to you, but remember - your doctors work for you - not the other way round. All my doctors know that I take control of my own health, spend a lot of time on forums (this one, a diabetic one) and they listen to what I have to say about what I learn on them. If your doctor isn't smart enough to realise that the people who live with these afflictions know more than they do - you need to find a new doctor.

No doctor worth his salt could dispute you wanting to take care of your own health or researching ways to make your therapy more comfortable. YOU have to sleep every night with a mask strapped to your face - however you get there with minimal leaks and maximum comfort and great statistics is irrelevant.

Cheers,
xena

[Mary Z]

Deleted to make way for better responses.

[lcook7281]

My doctor knows. I will often take in my laptop to my appointment with me or I will print in printed reports. He has then told me what changes he wants to try and I make the adjustments on my machine.

Lisa

[Gerryk]

My docs know and they both ask me how my numbers are. The data I download is also forwarded to them. If i do go to see the doc and haven't sent data to them in a while they will ask about it.

[jmcanzo]

My Doc knows, They do not have the software for the Intellipap and I do, so I print off my report and give it to them for my yearly check. I even had the Doc write an Rx for the software and module so my Medical Spending account could be used to purchase it.

[sleeptimeinNY]

I use my general internist/general practitioner as my sleep doc. First of all, I had to tell him exactly what to write on the script to get my machine changed from Escape to Autoset. I'm not sure what he would say if I brought in my Sleepyhead results. But it will be interesting. He sort of indicated that if I wanted to get that involved, that maybe I should look for a specialist sleep doctor.
I don't think he plans on monitoring me that closely and only indicated that he would insist on a sleep study every year... which I will cross that bridge when it comes to it.
I am just grateful to have found this site and benefit from all the good people and advice.

[JohnBFisher]

My doctor knows and asks me to bring my data. He gets really excited when I show him the results and we discuss issues that I see (odd patterns, etc).

I suggest you discuss your situation and how you use the data to monitor your therapy. For example, I show how I track large leaks to keep an eye on how effective my mask is .. and if it needs to be replaced .. or if I need to shave (!!).

If you have a doctor who says you should not look at your own data, ask him if he would restrict a diabetic from seeing their blood glucose data. Then ask him why a diabetic needs to monitor their blood glucose. He should state something about the dire consequences of poor blood glucose control. And then ask "So, doc .. considering how dangerous it is to drive while sleepy, why would you not want me to monitor my own sleep therapy? Do you want to assume that liability when I have an accident?" .. That last question will awaken even the most hide bound doctor.

So, do discuss it with your doctor.

[msla]

I just had my yearly appointment. They were not able to read my cards and I had to tell them what I remembered about the numbers. I printed out the 3 month report that they wanted for their files and dropped it off the next day. I also told them that I was on this board and Sleep Apnea Support Forum. The DME says that I am the only one who has the software and looks at my report. That is sad.

I should ask the DR to write a script for the software to be official.

[edm_msu]

If you are in the compliance stage for insurance, you should follow the prescriptions. Some DME or insurance might object if you changed things on your own. They may say you were non-compliant. Other than that, yes, let your doctor know. It helps the doctor to know what is going on.

[DocWeezy]

If you are in the compliance stage for insurance, you should follow the prescriptions. Some DME or insurance might object if you changed things on your own. They may say you were non-compliant. Other than that, yes, let your doctor know. It helps the doctor to know what is going on.

Neither the DME or insurance company care about what pressure you use and they are not going to check it in order to compare it to the original prescription. They ONLY care about the number of hours per night you are using the machine. You will NOT be considered "out of compliance" if you tweak your pressures...compliance is just the average number of hours per night over a specific period of time.

As others have said, it's good to take control over your own treatment because nobody else cares about it as much as you do.

[DreamLady]

I 'tweaked' my settings well within the compliance period. I even bought (out of pocket) a second machine so I could leave one at my daughter's home, where I visit 5-6 times a year. I took my card (from the new, self-paid machine, in several times during that period. No one ever commented on the fact that my pressure was raised to 10.6 (from 10), or that I was using an entirely different machine.

[edm_msu]

Neither the DME or insurance company care about what pressure you use and they are not going to check it in order to compare it to the original prescription. They ONLY care about the number of hours per night you are using the machine. You will NOT be considered "out of compliance" if you tweak your pressures

Good to know. Thanks for the clarification. I was thinking they might take a way out if they could.

[RandyJ]

Both my ENT who prescribed cpap and my GP are aware that I have the software and monitor my therapy, and have been interested in viewing my reports.

I was surprised to find, however, that my ENT did not have a lot of experience with the reports; I assume I am in the minority.

[MidnightOwl]

Absolutely. If nothing else it will tell you something useful about your doctor. But keep in mind that using software and using an internet forum are two completely different things and your doctor may have different feelings about the two. Keep them separate in your discussion.