who manages your sleep apnea?

fcaen · Post by **fcaen** » Sun Feb 12, 2006 4:36 pm

Hello,

I have a feeling that my general practionionner is clueless when it comes to CPAP technologies. His role seems limited to prescribing a sleep study and then prescribing a plain CPAP machine. And the DME's RT didn't seem too interested in my care or too knowledgeable.

After spending a little time reading this forum, I know more about CPAP, APAP, CFlex, humidifiers,.. than my providers! I feel I'm not getting the professional help and advice I need.

Who manages the treatment of your sleep apnea? Do you go to a specialist? An ENT? Someone with software to read the card from your machine? Do you have a great DME who does that? Or a better general practitionner than I do?

Thanks!

rested gal · Post by **rested gal** » Sun Feb 12, 2006 5:15 pm

fcaen, I manage my own treatment. I do it with an autopap machine and software. Diagnosed myself too, with no sleep study. No doctor involved at all other than a phone call I made to a good old GP to ask him for a prescription for "autopap" which he gave me.

The self-management way has worked great for me for over two years, and continues to give me well rested results. The message boards are an essential learning tool for anyone who wants to take up the reins of their own treatment.

Not suggesting that everyone go the route I took; it's smarter to have a sleep study. For people with multiple health problems or complicated sleep disorder problems, it's also better to have good physicians involved, no matter what field they are in.

Guest · Post by **Guest** » Sun Feb 12, 2006 5:27 pm

I bought an Auto machine out of pocket as it was cheaper than going through my sleep doctor/DME. I bought the accompanying software, smart card, and card reader. I conducted self-titration experiments over the course of several weeks with the assistance of the software (and this forum) to determine the optimum pressure range which resulted in the least amount of apnea/hypopnea events. As with many here, it was not the same pressure determined by the sleep lab titration.

I brought my smart card to my doctor and he "checked it". You might expect this to mean he examined my AHI as it related to pressure to see how effectively the CPAP (or in my case APAP) therapy was treating my OSA. But no. He looked at compliance hours. That's it; just compliance hours. He had no idea (and still doesn't), nor the incentive to check if my AHI was 4.2 or 40.2.

Who manages my sleep apnea? I do.

I do a much more thorough job than my healthcare "professionals" and I don't have to worry about scheduling appointments or paying for worthless visits. It's a good thing I have someone reliable and informed to count on for my continued CPAP therapy; myself.

Guest · Post by **Guest** » Sun Feb 12, 2006 5:28 pm

You might contact a support group - there is one associated with ASAA (Awake) in Lakewood. It appears to be connected with a sleep center at a hospital there. You can check the ASAA website for a contact name and number.

http://www.sleepapnea.org/

Guest · Post by **Guest** » Sun Feb 12, 2006 5:51 pm

You might contact a support group - there is one associated with ASAA (Awake) in Lakewood. It appears to be connected with a sleep center at a hospital there. You can check the ASAA website for a contact name and number.

http://www.sleepapnea.org/

Jim Eads · Post by **Jim Eads** » Sun Feb 12, 2006 8:20 pm

I do. It's my health. It's my responsibility.

Jim

NightHawkeye · Post by **NightHawkeye** » Sun Feb 12, 2006 8:47 pm

I do. I had two sleep studies which said I had little or no apnea, but I knew that I had a problem. (It turned out that my apneas occur only during the later stages of REM sleep and I simply didn't get there during either sleep study.)

On my own I rented an oximeter and took the results in to my sleep doc, who then wrote me a prescription for a machine of my choice. I noticed immediate benefits on the first night, but improvement has been slow since. My sleep doc doesn't have any ideas about how to improve things, so it's just a matter of me (nobody else to rely on) trying things to see what works.

Good luck!

Regards,
Bill

deedster · Post by **deedster** » Sun Feb 12, 2006 8:51 pm

I have an Internist that ordered the sleep study, a Neurologist I have never seen that recommended the Cpap after reading results, and a Neurologist that asks if I'm doing Ok with the machine, but is seeing me for another problem.

Who manages my treatment of sleep apnea? I do. I know more about how my treatment is going (from software and card reader) than any of them. They basically aren't interested if my AHI is decreased with treatment or not, only if I'm using the machine. I care because it is my health and my life.

So, don't be too concerned if you feel you know more than your providers. I bet most of us here do also.

jstclair · Post by **jstclair** » Sun Feb 12, 2006 10:04 pm

Nighthawk, I have a question. From where do you rent an oximeter?
A provider loaned me one for a couple nights a couple years ago, but I didn't put it to best use; didn't know then what I know now.

NightHawkeye · Post by **NightHawkeye** » Mon Feb 13, 2006 6:21 am

jstclair wrote:Nighthawk, I have a question. From where do you rent an oximeter?

In my small community, one guy has the market cornered on renting infant apnea monitors and he was happy to rent me an oximeter. I was referred to him after calling some local medical supply companies who "don't" rent oximeters.

After a few days I decided the results were interesting enough that I wanted one longer term and bought one on e-bay similar to the one I was renting.

Regards,
Bill

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