Does your MD allow you to change your machine?

Restless1 · Post by **Restless1** » Fri Oct 12, 2007 2:40 pm

Hi,

After I had my sleep test and titration in July, I was prescribed an auto CPAP at 4-20. I was waking up more with the CPAP than before because the pressure was going very high, and I was having non-responsive events. I could not get an appointment with the doctor, and no one would talk to me so I turned to this forum.

Snoredog and Wulfman suggested I change my machine to CPAP instead of auto at a pressure of 9. Apparently, it blew my mouth open, because I had a terribly sore throat the next morning. I changed it back to APAP to collect some data for a doctor I finally got an appointment with. He said my numbers were all over the place and wrote a prescription for a change to CPAP at 8. He also has a sleep lab so I was apparently suppose to have his girl come to my home to change my CPAP machine. I did mention that I could do it, and he made no comment.

My oxygen saturation during the initial sleep test was down to 81, and he asked if I had oxygen at home. I said no (but my husband does because he has emphysema). When I told my husband that, he thought he meant I should have oxygen so I wrote the doctor a letter the next day asking about that.

The doctor responded to my letter on August 30, but I did not get it until today because they sent it to the wrong address. In the meantime, I changed my machine myself to CPAP 8 as he had prescribed. I left it there for a few days until I was able to tolerate it without using the ramp feature, but my AHI was 20.1; 15.6; 20.3; 9.4; 10.6; 16.9; 10.9; 24.9 13.4.

Having every confidence in Snoredog and Wulfman's advice, I was comfortable changing the pressure to 9 as they had recommended earlier. I had also downloaded Jim’s software, and my “sweet spot” (I learned that here on this forum) was 9. Since changing my pressure to 9, buying a DreamFit mask from cpap.com, and trying the various methods to stop lip flutters, my AHI is now below 5. I accomplished this on my own with your help (not the doctor’s). THANKS GUYS!!!!!

Today I received that letter from the pulmonologist dated August 30, which said:

“I received your note of 8/24/07 following our 8/23/07 office interaction.

Your 06/27/07 HCM PSG report indeed described an elevated Apnea Hypopnea Index of 25.3 and SaO2 desaturation to as low as 81%. That study was done without C-PAP.

I am hoping that optimal C-PAP use will correct your oxygenation deficit. Thus I asked for a recorded continuous overnight oximetry study to be done subsequently on C-PAP, to confirm what will hopefully be adequate oxygenation then.

Both verbally and with our 8/24/07 letter, you have described how you have chosen to adjust your C-PAP machine by yourself. You very well may be quite competent in doing so, but I object to that as I cannot assume that my patients can all accurately make mechanical changes that they are not intended to be making!

I would appreciate it if you would take your C-PAP unit back the DME source where you obtained it, and have it checked over.”

Note his exclamation mark after the one sentence. What do you think I should do? I do not want to take my machine back to the DME. She had fitted me for a small mask and gave me a medium instead. When I complained about my eyes really burning and other things, she was quite rude, said to tie a knee-high around my head, and did not suggest that I come in so she could help me adjust the mask or anything.

My feeling is that if I am too incompetent to change my machine, then I am too incompetent to even be using the CPAP machine. No one talked to me after my sleep tests. I finally got an appointment with this doctor; but everything I know, I learned from this forum.

After reading his letter, I don’t think I should return to this doctor on October 25. The problem is I would not have a doctor in case a lung problem came up. There are only three pulmonologist offices here. The first would not see me when I was having problems because they had no appointments not even 2-3 months out, and the other one told my boss (a doctor) he could help me with my pressure but thought sleep studies were being over-prescribed now. But as I told my husband, if I had to go to the hospital, someone would have to see me.

Does your doctor allow you to change your machine? What do you think I should do?

Thanks.

Irene

oceanpearl · Post by **oceanpearl** » Fri Oct 12, 2007 2:46 pm

If he has put it in writing and you don't do it you could end up with an insurance payment problem.
Never, ever, ever, ever (did I say ever?) tell your doctor that you have changed a macines settings. Unless of course you don't have insurance and are footing the bill yourself.

ApNoob · Post by **ApNoob** » Fri Oct 12, 2007 2:52 pm

oceanpearl wrote:If he has put it in writing and you don't do it you could end up with an insurance payment problem.
Never, ever, ever, ever (did I say ever?) tell your doctor that you have changed a macines settings. Unless of course you don't have insurance and are footing the bill yourself.

Don't the data capable machines tattle on us (well, not me, actually, yet...)?

Restless1 · Post by **Restless1** » Fri Oct 12, 2007 3:11 pm

Oceanpearl,

Are you saying if I don't have my machine checked out by my DME, I could have an insurance problem? What kind? I had to buy the machine and mask, $300 deductible plus 10%.

I am getting real sick of these doctors and DME. If I have to jump through all their hoops and be controlled by them, then they can wear the darn thing themselves.

I know a lot of you really feel better after using your machines, but I can't tell any difference. But then the only symptom I noticed was that I got sleepy riding in a car with someone.

Wulfman · Post by **Wulfman** » Fri Oct 12, 2007 3:27 pm

Hi Irene.

Glad to hear you're doing better.

My opinions and thoughts:
Any doctor that would prescribe a setting of 4 - 20 on an APAP doesn't know what the Hell he's doing in the first place.
It was those settings that ended up giving you horrible numbers, which was HIS fault. (until you reprogrammed your machine)

It's ultimately YOUR therapy.
He works for YOU. (you and your insurance provider are paying his bills)
Obviously, you have the software to monitor your therapy and can tweak it to your best results.
He can't do a darned thing to you. (changing your OWN machine settings is NOT illegal)

Unless you REALLY need this doc for something else, I'd cut him loose. Or, at the least, you don't have to see him for any more CPAP issues, I wouldn't think. If you have other medical issues, I wouldn't think the CPAP issues should have to enter into those.

I told my sleep doc (pulmonologist) at our first meeting after I started on therapy that I had reset my machine to 10 cm from the 18 cm he had prescribed. He didn't seem too happy and was dubious about the results when I showed him my Encore Pro reports, but there wasn't much he COULD say as I had the proof in the reports. I also hadn't used the additional oxygen he prescribed, either. He then ordered an overnight pulse oximetry to see if my therapy (and new pressure) was keeping my blood oxygen levels up.....which I did.....he got copies as did I and that's the last I heard from him. Some months later, I dropped off some more reports at his office, but have had no further contact with him.

SO, to answer your question......Yes, he DID allow me to change my pressure.

Don't let them bully you around or try to intimidate you. Turn the tables on them.

Den

Wulfman · Post by **Wulfman** » Fri Oct 12, 2007 3:37 pm

Restless1 wrote:Oceanpearl,

Are you saying if I don't have my machine checked out by my DME, I could have an insurance problem? What kind? I had to buy the machine and mask, $300 deductible plus 10%.

I am getting real sick of these doctors and DME. If I have to jump through all their hoops and be controlled by them, then they can wear the darn thing themselves.

I know a lot of you really feel better after using your machines, but I can't tell any difference. But then the only symptom I noticed was that I got sleepy riding in a car with someone.

Your DME isn't going to bite the hand that's feeding them. They won't make any waves with your insurance as long as they're getting money.

Just make sure you keep all of your Encore Pro files as ultimate proof of compliance and your progress with your therapy.....just in case.

"Recovery" can take many forms and can vary from person to person.....depending on how long you've suffered from this and what other health issues you've developed. I lost my daytime sleepiness right away, but other health issues have taken time.....lower blood pressure and improvement in joint pain, etc.

Make sure you're also getting ENOUGH sleep, too.

Hang in there.

Den

Slinky · Post by **Slinky** » Fri Oct 12, 2007 3:47 pm

H*ll, most of them don't even look that closely at the data that they'd notice if you have played around w/the pressure settings. And if they do, its a simple explanation: YOU were SUFFERING at home whilst THEY were busy for (days, weeks, months, whatever the time period was) and not available to help you.

And have you yet received the recording oximeter and done the overnight oximetry or has that overnight oximetry he SAYS he ordered not even been done yet?

Is he aware the letter was sent to the wrong address and that you didn't receive it until today??

I would keep the 25 Oct 07 appointment w/this doctor. It is not directly his fault you didn't receive the letter until today. I'd just ignore his comment about his not being happy w/your changing your pressures. If it is brought up - you did it in self-defense, your therapy wasn't working and you weren't getting any TIMELY assistance.

I would FAX this doctor a short and quick note that you did not receive his letter of 20 Aug 07 until today as it was sent to the wrong address. Include the WRONG address it WAS sent to and also the CORRECT address and ask that they make sure that their records are corrected accordingly. Add a friendly "See you at our appointment on 25 Oct. Hopefully you will have been able to order the overnight oximetry and have the results by then."

Give him the benefit of the doubt. He's been under the reasonable assumption that you received his letter of 30 Aug quite some time ago. You on the other hand, deserve recognition of the fact that so far as you knew he ignored your letter and you were left high and dry to your own devices.

I'm sure you've read the analogy here of CPAP therapy to diabetic therapy. Practice it. Use it when you see him in person on the 25th, if the self adjustment of pressure is brought up, as well as your being left high and dry w/little choice but to suffer or take matters into your own hands. You wouldn't have done it if you hadn't been driven to it. (Yeah, right!). Bat your baby blues a bit and look innocent.

Guest · Post by **Guest** » Fri Oct 12, 2007 3:53 pm

My Doc lets me change my machine. He says I know almost as much about the treatment as he does. The only thing he asks is that if I change it to bring him a copy of my report showing why I changed it and show him what happened after I changet it. Yea, my DME almost went beserk when she found out I changed it but calmed down when I told her I cleared it with my Doc (after about a month) . Still a bit snooty because the Doc did not tell her and I'm not suposed to know how to change it. But neither one of them has the program to read my card so I guess I don't have to worry about them checking up on me.

If you are renting like I am for 3 more months the DME could cause problems with insurance payment if the insurance requires a compliance report. If they want to check it just erase everything reset it to the presure and take it in. Reset everything when they get through checking it. I have never done it but I think you can store the card contents and restore it off the utility program off mycpap.com.

Slinky · Post by **Slinky** » Fri Oct 12, 2007 4:06 pm

Giggle. IF the DME doesn't have the software they have no way of proving or disproving compliance!!! All my sheister DME ever did was send me a letter I had to sign, date and return stating I was in compliance and using my CPAP. So much for PROVING compliance for insurance purposes.

msheda · Post by **msheda** » Fri Oct 12, 2007 4:39 pm

My Health.
My Cash,
My Machine,,
My Software,
My Therapy
My Settings.

Actually my script was just for an Auto Bi-PAP, no settings specified.

Not that I suggest this for anyone else, but you asked.

Only thing my doc has asked is, is it working? I said yup. He then asked oh, your on Bi-Pap, what pressure. I said 14.5 and 17.5 (which it was that week) and he said, when is it 14.5, why did you move it to 17.5? I said, umm it's Bi-PAP, he then went oh, umm, and then changed subjects.

Let's face it folks, since we are the interested parties, in some cases we know more than the docs on some things.

Guest · Post by **Guest** » Fri Oct 12, 2007 4:46 pm

Thank you everybody. Wulfman, you made me feel so much better, I about cried.

Slinky, you make some good points; I'll think about going back. I won't lie about changing my pressure, but maybe he won't notice that I changed it to 9 instead of his 8. Perhaps it is better to discuss in person that I won't run to the DME every time he wants my machine changed. I have a full-time job, and I won't take time to do something as simple as changing the machine. I think that is very condescending and belittling for those who know how to do it.

I didn't have an overnight oximetry. If he ordered it, his office apparently didn't follow through, because no one called me about it. I don't know if he even knows my DME is Apria. (Apria brought an overnight oximetry out for my husband a few months ago so I know what it is.)

No, I haven't read the analogy of CPAP therapy to diabetic therapy. I will have to search for it.

Thank you again, every one.

Irene

RosemaryB · Post by **RosemaryB** » Fri Oct 12, 2007 5:01 pm

My MD had never seen an xpap software report before I brough in mine. He's the one that suggested the sleep study in the first place. He says that he refers people for sleep studies a lot and only once did the person not have it! He's a good guy. But I think that he feels that the software stuff is for a tech to do. He's very busy and spends a LOT of time with each patient. He's a GP and treats patients with all kinds of problems. I am sympathetic to this.

He was very interested in the software report, but I know hasn't educated himself further than that. He's very supportive of my efforts. I showed him why I changed my pressure and he concurred that it made sense. He is very supportive of my being proactive with my treatment. I do explain what I'm doing and will tell him about any changes.

If he was a sleep specialist, I'm darn sure he'd be learning a ton about the software and getting patients proactive with their treatment. He's a fairly new doctor and also a geek!

echo · Post by **echo** » Fri Oct 12, 2007 5:39 pm

If i were you I would respond to his letter (as Slinky suggests), and also explain the sitation and timing from your side.

It might also be worthwhile to document your experience with the DME to your doctor. Maybe others on the forum can give more advice on whether this would work for you or against you, but I think it can only be helpful if you make your doctor aware of the situation that you have deal with. While you're at it, I would document the treatment you received and mail a letter to the DME and the insurance company.

I had a similar story with my doc - in the end I changed it myself because they gave me a whole B.S. story, and at my followup they said it was OK that i changed it (they themselves offered to tell me how to change the pressure).. so I think it really depends on the doc.

Sorry to hear that your doc is not so sympathetic and seems to be one of those that just sit on his high horse....
good luck!!

Snoredog · Post by **Snoredog** » Fri Oct 12, 2007 6:15 pm

well if it was me, I'd get a new doctor! (explanation mark) that guy just wants to keep sucking money out of your wallet and insurance.

I bailed on my sleep lab and doctor years ago, never have looked back. With my autopap I don't have to worry that my oxygen levels are dropping or my AHI is too high or my old Sleep doc can no longer make his Mercedes Lease payment.

My GP doctor wrote my script for an autopap. Of course he warned me that the Sleep lab and doctor I used had a conflict of interest, Aetna even warned me of that when I got pre-authorization for the first PSG.

I no longer have insurance, but I own my machine, no rent, no DME's to deal with, no co-pays, none of that garbage. If I hadn't purchased a dozen machines every time a new one comes out I would have spent a lot less but that is only because I like new toys. I don't have to drive 40 miles each way, waste $50 worth of gas, waste a half a day seeing a doctor, wasting about the same with a DME.

if I need a new mask, hose whatever, I just go online and order it with a few clicks and it shows up at my front door in a few days.

sharon1965 · Post by **sharon1965** » Fri Oct 12, 2007 6:32 pm

i have to admit, i am a little apprehensive about my november app't with my sleep doc

i've only had my data capable machine for a few weeks (out of 9 months) because my dme tried to convince me i didn't need it and my sleep doc doesn't read data cards to begin with! when i told him i wanted a smart machine he told me to go ahead and upgrade, but he didn't feel it would tell me much

when my RT gave me my machine she said to bring the card in every couple of weeks for her to download and i told her i'd be doing it myself...she said, "don't buy a reader! i'll do it for you"...i asked her who she'd be sharing the reports with, me or my doc? she of course said my doc and i told her i want to view my own reports, so i'd be getting the software and reader myself...she did say she wished all of her patients were as empowered about their therapy as i am, but that's after 9 months of stonewalling me for a better machine

on my prescribed pressure of 6, my reports showed ahi's of 7, 8.1, 9.2, 6.8...i increased it to 8 and got 6.6, 5.8, 5.8...since i increased it to 8.5 i've had 1.8, 2.0, 2.5...so i do feel that my reports did tell me something! ...but now i'm a little nervous about telling him, even with the reports to show him, because he's the only game in town and he prescribes me my other sleep related meds...i know, i know, all the stuff you guys said earlier is true, it's just different here ontario where the docs fire people if you disagree with them and often don't take people at all if they feel you have too much wrong with you!