Sleep Blog

This is a story from “the Doctor is Always Right Dept.” or the “Physician, cause no harm dept.” …

A provider calls a doctor to discuss a prescription for a new xPAP machine for a patient. The sleep study shows the person needs a bi- level machine with an IPAP (the inhalation pressure) at a pressure greater than 20. The doctor gave the patient a prescription for a CPAP (which has only one pressure) at 10. Here’s how the call went:

Provider: Doctor, the sleep study called for a bi-level machine at these pressures …

(doctor cuts off provider mid-sentence)

Doctor: That’s okay, I know what I wrote.

Provider: Are you familiar with the difference between a bi-level and a CPAP and what purpose pressure levels serve?

Doctor: Don’t try to speak down to me. I am a doctor. If you want to talk to me like that, tell me just where you earned your medical degree!

Provider: Doctor, I’m really not. I am trying to make sure the patient gets the equipment they need to treat their apnea. I’m seriously concerned about your patient, as the prescription you wrote is for less than half the pressure shown to be therapeutic during the sleep study.

Doctor: I’m the doctor and I write the prescriptions. Handle it as I ordered.

(doctor hangs up)

A day later the patient goes to the provider’s location to pick up the equipment.

Patient-to-Provider: What’s this? I’m supposed to be getting a bi-level machine.

The provider explains the conversation to the patient at this point.

Patient: I’m going to a different doctor, one who has his head screwed on straight and knows what he is doing when it comes to sleep apnea. I’ll be back with a prescription for what I really need.

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Yes, this kind of thing happens a lot, unfortunately. Yes, before you ask, this was a real conversation, which makes this all the more sad and pathetic. The moral of the story: be a well- educated, well-informed patient, as no one else will be your advocate if you don’t advocate for yourself.

Aside from being valid, the excuses, such as “woe is me” and the “I’m tired of fighting the idiots” are tired and poor excuses. They do go back to the heart of the matter, which is summed up best in this old attorney joke:

Attorney 1: What do you call the person who was graduated at the bottom of his class from medical school?

Attorney 2: Sir?

Attorney 1: No, you call him the same thing you call the person who was graduated at the top of his class: “Doctor.”

Just food for thought. Always be on your guard. Know what’s going on. Know and understand terminology, your equipment, and such.

Educate yourself about all your health conditions as much as possible, and stay on top of things. If you can’t do that, for whatever reason, such as having too little time, not having a network of people to turn to for help, not understanding “medical-ese” or whatever else, turn to someone — in real life, not on the Internet — to tag along with you who does understand the issues involved, but who does have a grasp of your health conditions and is willing to be your advocate.

It doesn’t take much to make a major screw-up. If you start a trip on the Boardwalk in Atlantic City and begin walking, wanting to end up in Malibu, California, you better have a map, a compass, an azimuth, or a GPS device and know how to use the tools. You also need to know from where you are starting and where you want to end up at the final step of your trip.

A slight variation, for example, if you are hiking the distance, of but one degree will keep you hundreds, if not a thousand miles or more (I didn’t change the degree calculations, sorry) from your destination — either too far north or too far south, and that is if you start out in the right direction, which would be a westerly direction. If you ended up walking southerly, you will likely end up in one of the Southern states or Mexico.

The same principle holds true in regard to your health care: a slight deviation can produce results far from the optimal result. Be your own best advocate or enlist someone to fill that role for you. It is a necessity, not just a “nice thought,” as someone told me the other day. The person said that after they complained to their treating physician about not liking the feel of the air pressure from their bi- level machine during the first night of use at home. The person had been diagnosed with severe obstructive sleep apnea, had several related health issues, including cardiac issues and memory loss.

The doctor told the person that if they didn’t like it they shouldn’t use it, adding that it “won’t do any harm.” Interesting. I told the person to get a large life insurance policy, list their spouse as the beneficiary, and make funeral arrangements. The person didn’t like the answer, asking me to tell them “the truth” as they wanted to hear, which was that things would be okay and that apnea isn’t a serious health issue.

Unfortunately, too many in the medical community are far too uneducated — or know just enough about sleep apnea, nay, sleep disorders, overall, to be dangerous — and live with stereotypes and thinking that is at least 20 years old.

Too many in the medical community are not up-to-speed, up-to-date on the gravity of sleep disorders. Until a comprehensive outreach program is launched, a comprehensive education program — one that uses public service announcements on TV, radio, print publications, and the Internet — things will not change.

Sleep disorders are at the same stage where diabetes was around 40 years ago or so. I’ve been working to get several campaigns launched — ones that are conceived, planned, designed, and people at-the-ready — but getting the funding for such an endeavor is like holding your breath under while being prodded with a stick.

Do you have 40 years to wait for your health care providers to get up- to-date on sleep disorders so they can begin treating you appropriately?

Not using an xPAP will land you in the grave. It may be tomorrow, it may be a year from now, or maybe five years. It depends on how much damage has been done to the body already. The cause of death will be listed as something else, such as heart attack, heart failure, sudden cardiac death, and the list goes on. The true underlying cause — the sleep apnea — will probably not make it in print on the death certificate, yet it provided such a large role in the ultimate outcome.

The choice is yours: be educated, advocate for yourself, or suffer the consequences at the end of the road.

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