Question for your CPAPers

[CathyA]

Just curious..........do feel like you are "allowed" to make changes on your machine without the doctor's order?
Do you use a DME provider? (Durable Medical Equipment) or do you order your machine, etc., online? Are you happy with them?

I'm getting pretty irritated with medical/equipment people who think we don't have the intelligence to know how to handle our own treatment and our machines.

[Kestrel]

When we lived in CA our DME provider told me absolutely everything I needed to know about how to change anything I wanted to, and I experimented a bit. Here in Idaho (different provider) I was given only the basic info (since I already "knew" stuff), but of course have the manual and everything I need seems to be in there. I haven't felt the desire or need to change anything ... but if I do and can't find it in the manual I will call them and/or take my machine in. And if that doesn't work I'll call my doctor. And/or throw a tantrum or two.

My doctor prescribed the machine and insurance paid for it. If I need filters I go get them. I have enough hoses to last forever.

[Simpler at Fifty]

We use a DME provider. We can bring the machine in or call whenever we want to. We would never think about making changes to my machine. Our provider has never made us feel that we are not intelligent enough to understand our machine.

What kind of changes do you want to make to your machine?

[CathyA]

You're lucky Kestral. I pretty much have to pay for the whole thing and all the tubes, filters, etc. And true to a small town mentality........around here you're not supposed to know anything. I guess they think it takes away from their power.
When I first got the machine 7 years ago, the apap settings woke me up all night, so, with the help of cpap.com forums, I was able to change it to straight cpap and it worked great. Then about a year ago, my numbers were getting bad, so I went up 1 cm of pressure. When I went to the doc last month (its required once a year with using cpap), the nurse was totally miffed that I had changed my pressure 1 cm. Then at the DME today, while getting my 2nd machine, she "wasn't allowed" to tell me certain things about obtaining data from the machine. Its such a pain in the arse. Once I get this new machine going, I'll do what I want. But.....Anthem BCBS now requires me to take in my data card within 90 days, to make sure I'm using my machine more than 4 hours/day. I guess they won't put my payments towards the deductible if I'm not. I've used it every night but 2 for the past 7 years. You'd think they'd trust me by now. But..........the nurse will once again see that I'm "playing" with my machine. Shame on me.........being in control of my own treatment! :devil:

[CathyA]

Simpler at Fifty........I check my data every morning as to what my AHI and leak rate are. If my AHI starts getting too high for too long, I go up on my pressure just a little. I was a critical care nurse............I think I can increase my air just a tad without having to see a doctor, get a prescription, go to the DME, have them call the doctor to make sure it's okay, then turn a knob on my machine....then pay everyone money.
And you don't have to be a nurse or a doctor to understand how to do this. Its like diabetics.........they can adjust their meds according to their numbers......why can't we add a little room air pressure to our cpap settings?
And I'm on a pretty low setting. Its not like it could cause any problems at all. Now if I were on a setting of 18, I might consider asking the doc about it.

[Simpler at Fifty]

Good to know CathyA. I am on a low setting also. I don't know that I would ever change the setting but checking the reading each day may be very helpful for me. I rarely wake rested even though I use the machine every night. I think most insurance companies including Medicare require at least an annual visit to have the card read. I believe they found that people were ordering supplies and not using their machines. This way if you do not use the machine at least 4 hrs a day/night they most likely will not pay for the machine. That seems fair to me. DH is on a setting of 18, he stopped breathing over 100 times an hr when he got tested. He had one machine break since being diagnosed 8 years ago.

[bae]

"Allowed"? It's my body....

I have the service/operators manual for my machine, can read the data it logs, and am perfectly capable of analyzing it myself, and taking appropriate action.

I have to pay for the whole thing myself, cpap.com is my friend.

I'm still bitter about the initial diagnostic procedure, also out-of-pocket, thousands of dollars down the drain. If I'd known then what I know now, I would have had Someone Else write the initial scrip for the machine, and titrated the pressure myself. (Not that that is really even needed with the super-intelligent machines of today, for goodness sake.)

[CathyA]

Simpler at Fifty.......I think its soooo important to check your numbers every morning. If your leak rate is high, then you aren't getting any of the air into your lungs. Unfortunately, my doc says he's not concerned with leaks......which really bothers me. He also said that an AHI of 5 is good, but I'm hoping to get mine lower somehow. Why not strive for better numbers? Some people can get it down to 1-2, which would be great. But knowing what's going on with your treatment is real important. Using cpap is such a pain.......I'd hate to think you were not really benefiting from it.

[redfox]

My pressure is so low that it's not needed tinkering on the three years I've been on treatment. I have a good MD, and feel confident I could get support to self- adjust if needed.