Getting Started and Startling the Doc

[Kiralynx]

Well, my husband had the sleep-study follow-up appointment with the pulmonologist yesterday.

Yes, he has sleep apnea. Severe -- AHI of 60+. Which does rather explain why he had been falling asleep in his desk chair every evening.

Pulmonologist was kind of startled to learn I had already set up my old Remstar ASV as an APAP -- like how did you know what to set it for? Well, a wide-open APAP is set on 4-20. The majority of individuals I know prefer something higher -- 6-8 on the lower end, and no more than ten higher on the high end so the machine doesn't have to chase apneas. So I chose 6-16.

He said regular CPAP on 9.

I said I wanted husband to have an APAP, since it could be set on straight CPAP if needed, but also could gave a range if the data indicated it was warranted.

He said that the APAP was a more expensive machine (true) and that insurance wouldn't pay for it.

I said the billing code for CPAP -- whether it was a brick with no efficacy data or a top of the line auto-CPAP was the same, Insurance wouldn't care. He blinked.

Then he said he would send the script over to Ochsner's CPAP division.

I said I already had a DME who did a good job, and it really made no sense to use two different companies for one household.

He really wanted us to go with Ochsner.

I pointed out that as long as I had his script in hand, I could pop out on the web and completely bypass brick and mortar facilities, as well as insurance to get the machine we wanted.

He capitulated.

He started to put in "nasal pillow mask."

I told him to make it "mask of patient's choice" as that would allow my husband to select any type of mask he wanted at any point in time. He said, "But he was using a nasal pillow mask." I said, "Yes, a spare of mine which I refitted to him. Just as he should have his own new machine instead of my re-purposed ASV, he should have the option of choosing any mask which works, since a properly fitting mask is one of the keys to successful therapy."

He put it in and then changed the subject to the original reason my husband was seeing him.

I think I unnerved him.

We did get the script. I also got the sleep study summary with graphs.

I'll be glad when husband has a machine we can read the data on.

Oh, and the pulmonologist's range for an APAP? 5-15....

I am so glad I had an old machine I could set up. It's been two weeks since the study. May be another 2-3 weeks for insurance to approve his machine. I do know THIS DME usually only takes a couple days to get a machine in.

Even so, we've already started therapy, instead of waiting a month or more.

[jnk...]

Poor doc. Probably still has no idea what hit him. Likely went straight home and had a few too many martinis as he tried to get his, uh, bearings back.

Nicely done.

Remind me never to mess with you.

[chunkyfrog]

Cruel, but effective.
Good for you.

[palerider]

[Kiralynx]

Poor doc. Probably still has no idea what hit him. Likely went straight home and had a few too many martinis as he tried to get his, uh, bearings back.

Nicely done.

Remind me never to mess with you.

I learned it all right here on CPAPTALK.....

[Kiralynx]

Cruel, but effective.
Good for you.

Mind you, I wasn't intending to be cruel. Merely letting him know that we are not uninformed users.

I am still profoundly grateful to Paula, who directed me to this Forum, with the comment that "These are not your average CPAP users. But they are what all CPAP users should be like."

[Janknitz]

Kira,

I'm a patient panelist at the American Association of Sleep Apnea conference next week in San Francisco. May I take a copy of your post? I think you have given a great example of what an empowered patient can accomplish and this would be a great thing to bring up on the panel. I think doctors and DME's and insurers really need to hear stories like this.

[Kiralynx]

Kira,

I'm a patient panelist at the American Association of Sleep Apnea conference next week in San Francisco. May I take a copy of your post? I think you have given a great example of what an empowered patient can accomplish and this would be a great thing to bring up on the panel. I think doctors and DME's and insurers really need to hear stories like this.

Jan,

Yes. Be glad to help. Yes, doctors need to know that we patients are the ones who live with this therapy every night of our lives. Knowing how to implement it, knowing what is and isn't possible, is critical to our success.

BTW, my husband was chuckling at the doctor's amazement. He commented, "It helps not to be going into this without information!"

[Miss Emerita]

Kira, you rock! And this story is a tribute to all the people on this forum—take a bow, everyone!

[jdavszu@gmail.com]

As someone about to start using a CPAP, this is definitely an inspiring story that motivates me to be as informed and empowered of a patient as I can be. Thank you for sharing!

[Kiralynx]

Kira, you rock! And this story is a tribute to all the people on this forum—take a bow, everyone!

It is a tribute to all the good folk of this Forum.

And very much deserved. I learned so very much, and continue to do so.

[ChicagoGranny]

I think I unnerved him.

Good for you!!!

The best that could come out of this would be the doctor changing the way he deals with all of his patients.

[D.H.]

He wanted you to go to a particular DME! I smell a conflict of interest! That being said, I loved my first DME (who is no longer in the CPAP business) that I got through my sleep doc's office. The machine that I got was state-of-the art for that time (though a huge dinosaur now).

Moreover. how did you determine your own settings? You posting implies that you did not have a titration study and might not have even had a diagnostic one.

[slowriter]

... how did you determine your own settings? You posting implies that you did not have a titration study and might not have even had a diagnostic one.

Are you replying to the OP? Because the first line mentions the appointment was a followup to a sleep study.

[slowriter]

I find the question of how aggressive to be with my sleep center and DME tricky at times. I don't live in a big city, so good and convenient options are limited.

So I find that sometimes I have to be really blunt, other times gently suggestive, and still other times simply creative.

Oh, and I immediately cancelled my relationship with my DME when they tried to manipulate me.