How do I tell the Doctor?????

soulrhythm · Post by **soulrhythm** » Mon Dec 10, 2007 6:07 pm

How do I tell the doctor I have been changing my own pressure settings?

Ok, so I have been on CPAP since July. I was titrated at a 9, but my wife noticed me snoring a little and my AHI was at 7+. Using this forum I learned how to change the menus and I gradually increaded my pressure up to 11.4, at which my AHI averaged out at 3.5.

At this point I had my first follow up visit. I set my maching back to 9, but wondered if the doc would see that my average 95% pressure was much higher. He did not (or if he did, he did not say anything). I told him about the snoring and he said he would set the machine at 10. I also asked him about APAP since my machine had that capability and he said that it was mainly for people at much higher pressures than me

When I got home, I noticed he had forgotten to change the pressure to 10, so I changed it back to 11.4 . Then, as many of you may have read on previous posts, my interest in APAP got the best of me and I have since been using a setting of 9-13. My pressure averages between 11-12.4, but has even been higher lately due to my congested nose.

I am wondering what to do about my next visit (not for a few more months yet), and whether or not I should say anything? If he checks this time, my pressure will likely be higher than 10, and I may have to explain myself.

Any advice?

I have even considering calling him and telling him, but I have this fear (probably irrational) that he will cancel me as a patient. I have also considered skipping my next appointment, but am wondering how often my prescription need to be updated for the DME to continue servicing me or for insurance to continue covering everything (I have Blue Cross)?

Guest · Post by **Guest** » Mon Dec 10, 2007 6:12 pm

When I changed mine I took in the printouts of my results and told him here is why I did it and here is how it worked. He looked at it and said "I think you did the right thing". Enough said!

Jerry

soulrhythm · Post by **soulrhythm** » Mon Dec 10, 2007 6:14 pm

I guess I need to get a data card reader and software, huh?

I have been logging all of my on-sceen data everyday for the last month (and will continue to do so). This may be helpful too.

Goofproof · Post by **Goofproof** » Mon Dec 10, 2007 8:47 pm

soulrhythm wrote:I guess I need to get a data card reader and software, huh?

I have been logging all of my on-sceen data everyday for the last month (and will continue to do so). This may be helpful too.

Yes you do as do all who have the machines that collect useful data. Your Dr. needs you more than you need him, unless you are counting on ins to pay the bills. If you have the data in hand and it is good, what can he say. My Dr. is glad I'm doing good and Oks what I do because it works. Jim

Wulfman · Post by **Wulfman** » Mon Dec 10, 2007 9:11 pm

Your doctor works for YOU......not the other way around. Also, based on what your doc said about APAPs, I'd question his knowledge, too. If he doesn't know the difference between an APAP and a Bi-PAP (Bilevel), that would be a clue that he's clueless.

My sleep doctor prescribed a pressure of 18. I got all my gear from CPAP.COM and after a little less than an hour, I decided that I was going to start at something lower......so I set it to 10. I also had the Encore Pro software from the beginning, so after I collected about 4 nights of data, I downloaded it and it turned out that that pressure was doing a good job of taking care of my apneas and hypopneas. At my first appointment with him, I took the reports with me and told him that I'd reset my pressure.....he tried to discredit the reports and that I couldn't be doing that good on almost half the pressure he'd prescribed. I stood my ground and he backed down. He was also wondering how I knew how to change the pressure, too. I just told him I went into the setup and changed it.
It's MY therapy. I'm the one who has to sleep with this stuff every night.....not him.

They can't do anything to you.....and if you can show them that the results of the changes were an improvement, so much the better.

Den

Gerald · Post by **Gerald** » Mon Dec 10, 2007 9:21 pm

You are not a "child".....and that so-called doctor is not your "daddy".

Take charge of your therapy. Be independent......not "bovinely compliant".

Be very nice....but, very firm. It's your life....not his.

Gerald

ozij · Post by **ozij** » Mon Dec 10, 2007 11:36 pm

Wulfman wrote:Your doctor works for YOU......not the other way around. Also, based on what your doc said about APAPs, I'd question his knowledge, too. If he doesn't know the difference between an APAP and a Bi-PAP (Bilevel), that would be a clue that he's clueless.

Another clue would be the fact that he forgot to set your machine at the right pressure.

And the third clue is your choice to behave as though you don't trust him:

At this point I had my first follow up visit. I set my maching back to 9

.

Why in the world return to a doctor who:
Does not know the difference between a self adjusting machine and a bi level one?
Does not remember to set your machine at the pressure he thinks you need?
And to whom you do not report show the real data?

It's a waste of your time, and his too.

Find a doctor you can trust.

O.

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CPAPopedia Keywords Contained In This Post (Click For Definition): APAP

Elle · Post by **Elle** » Mon Dec 10, 2007 11:55 pm

I'd wager that he wouldn't notice or care.

snoregirl · Post by **snoregirl** » Tue Dec 11, 2007 12:27 am

Why go back at all? You have a machine (an apap at that) and you have knowledge. In my non medical opinion it is a waste of a copay to go see him again any time soon.

rested gal · Post by **rested gal** » Tue Dec 11, 2007 1:38 am

Ditto to what everyone said in their replies.

soulrhythm wrote:I guess I need to get a data card reader and software, huh?

Not really. You can get all the meaningful data you need right from the window on the machine, just like you've been doing.

If you want to do a belt and suspenders kind of check, call the doctor's office and ask him (or his nurse) for one last thing. Ask him to order an overnight recording pulse oximeter test for you, so you can be sure your treatment it keeping your O2 level up nicely while you sleep. If the doctor tells the DME to do that, the DME will usually do that free for one night. You just wear the pulse oxi at home one night while you sleep, and take it back to the DME the next day for the DME to download it.

But I probably wouldn't even bother with that unless you just really want that extra reassurance. Your AHI is nice and low. Sounds like your treatment is going well the way you're doing it.

alv7722 · Post by **alv7722** » Thu Dec 13, 2007 12:17 am

I had to go around my doctor(s) and get a mchine on my own without a prescription. I feel my condition was severe enough I was on my way to end up like the actor mentioned in another post. My sleep doctor fired me for not trusting his "protocol" which would have entailed anothr 45+ days to get therapy. Now my PCP and rheumatologist say I did the right thing, though they couldn't help me when I was under the "sleep doctors" "care". I have an auto M, and have been following restedgals advice and raising the bottom pressure every few nights to try to get the ahi down. I don't know if I need an Rx to get the card reader and software, but I at least know I can do so either way.
Whats great is getting my mind and personality back. I know those I work with thought I was drunk or on drugs, and I am sure I was only about a week away from losing my job!

There is a lot of evidence mounting that patients are capable of managing their own "titration" with as good or better results than current "protocol". These "protocols" are costing the insurance companies millions or billions, that is passed on to us one way or the other. We have no way of knowing how many lives are lost from persons not able to afford the "protocols". I tend to be simplistic in a lot of my thinking, but I wonder what the downside would be of making this therapy available OTC? Or at least start filtering it down to the PCP's realm! "If it snores, quacks, sputters, or stops breathing" go get one of these!!

I ramble too much, but I'm going to do what I can to get Blue Cross, my Congressperson, and the State Medical Board to look at this. It is not about anger, it is about accountability regarding care and costs.

Best wishes to all and many thanks for the help available here.

Al V

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CPAPopedia Keywords Contained In This Post (Click For Definition): AHI, Prescription, auto

rested gal · Post by **rested gal** » Thu Dec 13, 2007 10:31 am

alv7722 wrote:I don't know if I need an Rx to get the card reader and software

You don't need an Rx to get the software or card reader.

Buy the EncoreViewer software at an online store, like cpap.com.

The least expensive place I've seen for buying the correct card reader (Mako DT3500) is this Hong Kong store:

http://www.two-factor.com/shop/index.php?productID=115

I think two-factor requires PayPal payment. It's a little over $30 which includes shipping to the U.S.

If you need to use a credit card instead of PayPal, there are several U.S. stores that sell that card reader for almost twice what two-factor charges. Here's one:

http://www.securetech-corp.com/mako_dt.html

Good for you, alv, for taking up the reins of your own treatment when the sleep doctor balked.

How do I tell the Doctor?????

How do I tell the Doctor?????

How do I tell the doctor??

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