Does your MD allow you to change your machine?

msheda · Post by **msheda** » Mon Oct 15, 2007 10:12 am

Just like anything else, there are good and bad ones out there I'm sure.

I don't know if it's just the area or not. My dad went in for a sleep study after I got my machine. His complaint was that it was noisy (no insulation in the walls, everytime the guy next door coughed or snored he heard it).

I was lucky in that where I went for the study was quiet. I had a very good sleep tech. It's was just the follow through and the rest that weren't good.

Also, there is a main theme running through here, all of you have been pro-active in your therapy. What would it have been like if you were just, ok, what ever. (which unfortunetly I think will be my father unless I can light a fire under him, or be the fire for him).

If you understand, and ask intelligent questions, you will normally be treated different. This applies to most things, from buying a house, to buying a car, to discussing your health.

I was fairly lucky in that my Sister was an RN, and my mother was an OTR, so had grown up with a Merck and a Gray's, and a PDR in the house.

Wulfman · Post by **Wulfman** » Mon Oct 15, 2007 10:40 am

KansasRT wrote:I don't want to ruffle feathers, just repeat what I have said before. The people here are EXCEPTIONS! Most patients could care less what there machine is set at, or what sleep apnea is and how their settings affect their treatment. It is sad, but like with most things it is a all or nothing system. If your DR told you is was OK to change your settings, and then told someone else it was not OK and you somehow talked, the other person would be insulted. MOST CPAP patients that we see should NOT change their settings. I am OK with people who can desribe sleep apnea and can present an understanding of how the settings and results can be changed by settings. But the reality is that most cannot. If you have googled Sleep Apnea on the internet you are way ahead of most. I have a hard time getting some patients to pay attention for more than 20 minutes to go over a set up. It is sad that some are being punished for others unwillingness to understand.

Nor do I. And, I agree with you.

Unfortunately, ONE of the reasons that MOST patients should not change their settings is because they were given the cheapest low-end machines that don't collect or report any data to be able to determine how the person is doing, other than the "how do you feel?" scenario. If you have no "map" to indicate where you are, you don't know where you're going. How many times have we seen on the forum where a patient has contacted the doctor about not feeling any better.....the doctor prescribes a pressure increase.....only problem was, the patient was leaking the air out their mouth in the first place.....now, you've got MORE air leaking out the mouth and STILL not feeling better.

Another reason is that this therapy seems to be shrouded in "mystery" from the standpoint of the medical professionals.....you aren't allowed to know or inquire about any of this stuff.....like it's something from "Area 51".

In my opinion, some of the shenanigans that seem to go on amongst all of the parties involved in delivering this therapy border on criminality (think "grand larceny"). And, in part, it's brought to you by the same people who have contributed to our NINE TRILLION DOLLAR national debt.

There's a LOT MORE education that needs to be done about this therapy to ALL parties involved.

< steps off soapbox >

Den

ozij · Post by **ozij** » Mon Oct 15, 2007 10:46 am

[quote="KansasRT"]I don't want to ruffle feathers, just repeat what I have said before. The people here are EXCEPTIONS! Most patients could care less what there machine is set at, or what sleep apnea is and how their settings affect their treatment. It is sad, but like with most things it is a all or nothing system. If your DR told you is was OK to change your settings, and then told someone else it was not OK and you somehow talked, the other person would be insulted. MOST CPAP patients that we see should NOT change their settings. I am OK with people who can desribe sleep apnea and can present an understanding of how the settings and results can be changed by settings. But the reality is that most cannot. If you have googled Sleep Apnea on the internet you are way ahead of most. I have a hard time getting some patients to pay attention for more than 20 minutes to go over a set up. It is sad that some are being punished for others unwillingness to understand.

msheda · Post by **msheda** » Mon Oct 15, 2007 10:51 am

Wulfman wrote:Another reason is that this therapy seems to be shrouded in "mystery" from the standpoint of the medical professionals.....you aren't allowed to know or inquire about any of this stuff.....like it's something from "Area 51".

I have it on good authority that this project was moved to Airea 51....

(ducking now)

GumbyCT · Post by **GumbyCT** » Mon Oct 15, 2007 11:47 am

msheda wrote:I have it on good authority that this project was moved to Airea 51....
(ducking now)

Ya gotta love it, ha!

Guest · Post by **Guest** » Mon Oct 15, 2007 7:43 pm

Thank you, everyone, for your comments. They calmed me down and helped me sort out my feelings.

Kansas RT, I understand where you are coming from, but I would never have touched my machine if I had not been ABANDONED from the very beginning. No one had ever talked to me except someone from the sleep lab called to say the doctor was prescribing an auto CPAP to see if I could tolerate it. I only saw a respiratory assistant (not an RT) at the DME who just told me the basics of cleaning the filter, mask, etc. She would not discuss or let me see my prescription or sleep test either (although it is allowed in their Bill of Rights). When I called her to tell her my eyes were burning so bad after the first night that I couldn’t wear my contacts and my throat hurt, she was very rude and told me to tie a knee-high around my head. She had given me the wrong size mask. I eventually bought two new ones from cpap.com.

When the pressure was going really high, waking me several times during the night, and causing non-responsive events, I couldn’t get an appointment with the doctor who wrote the prescription, not August, not September, not October. The girl wouldn’t give me any appointment. I was going to put the machine in the closet and forget it, but I turned to this forum. Someone said I really needed to see a doctor so I got an appointment with this second doctor, who was in another town. In the meantime, I played with my machine with advice from this forum.

I think the reason the doctor was angry in his letter was because he wanted his girl to drive 25 miles to my home to change my machine (and charge a big fee). When I told him at his office that I could change it, he should have said at that time that he objected to it, but he didn’t which led me to believe it was okay.

For 7 weeks I didn’t think I was doing anything wrong, until I received his lost letter objecting to my changing the machine. By that time, I had already bumped up the pressure from his prescription of 8 to 9 and was getting good results (AHI below 5). At 8 my AHI was average 22.4, ranging between 10 and 24.9 (my sleep test was 25.3).

If he gets angry because I changed my machine to the pressure he prescribed, what will he do when he finds out I increased the pressure without talking to him and got better results than what he prescribed? I have decided that I cannot work with someone like that. I was only going to see him once more any way since I was doing better. The only reason I would see him again is to get the overnight oximetry study. If I want it that badly (which I don’t), I can buy a machine or ask my primary care doctor.

If I ever have a lung problem down the road, I’ll go to another pulmonologist. After I had already made the appointment with this doctor, my boss (also a doctor) told me he had spoken to another pulmonologist who would help me with my CPAP. But I think I’m going to go it alone for now (and continue reading and learning from this forum).

Irene

Guest · Post by **Guest** » Tue Oct 16, 2007 7:35 am

It's a shame you have to:
(1) trust total strangers on the internet as it relates to your health and shun your doctor,
(2) Buy your equipment from the internet vs. hands-on physical delivery by a licensed R/T

Good luck though!

Wulfman · Post by **Wulfman** » Tue Oct 16, 2007 9:16 am

Anonymous wrote:It's a shame you have to:
(1) trust total strangers on the internet as it relates to your health and shun your doctor,

The "SHAME" is that the medical professionals have turned this field into a "cash cow" and are fairly clueless when it gets beyond the theory of this therapy.

(2) Buy your equipment from the internet vs. hands-on physical delivery by a licensed R/T

Doesn't really matter where you get it, does it? From what many/most have reported, it's hard to make a case for the over-priced local support. IMO

Good luck though!

You, too.

Den