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Permalink Reply by Dan Lyons on April 25, 2009 at 12:16pm

Congratulations, you have already taken the biggest step - Educating yourself. Keep it up.

Get copies of everything. Start by getting a copy of your sleep study. Get a non-brand and type specific script from your physician. Make sure he/she does not trap you into a certain style and type of mask and machine. Some of these "professionals" trap you for their "continuing revenue" desires. While the majority are good, always remember there are unscrupulous persons in every profession who are out to line their pockets with your hard earned money.

You may also want to obtain a script for distilled water that is required for the machine. While not needed, it then allows you to deduct the cost of the required water as a medical cost for your taxes. (Every dollar counts)

Learn to shop the market place. There are many legitimate outlets for new supplies at a reasonable rate, not the inflated rates, health care providers are charging you because that is what they can command from the insurance carriers.

Get copies of the data they retrieve from the data card. This information is vital to your continuing and future treatment. If you decide to change physicians or for that matter, your general practitioner might need the information for you total health care.

Outside the medical visit, educate yourself about your health care insurance. Find out the limits of your coverage as it pertains to your sleep apnea treatment. Make sure you get the proper forms from them and find out the coverage replacement time frames for all the supplies you will need.

Always remember - you control your treatment.

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Permalink Reply by Mike on April 25, 2009 at 2:55pm

I second everything that Dan said -- I didn't know about asking for a prescription for distilled water for tax reasons, but that's a good idea. The key that Dan stressed is educating yourself. Take advantage of the short time you have with your doctor to have him/her walk you through the report he/she will generate from your data card, and have the doctor explain your results to you and what each of the key terms mean. This way the next time you get your data card read, you can hold your own and engage in a real dialogue with the doctor and question his assumptions. You can also buy a data card reader/ software and monitor your data on the fly yourself, like I and many others do.

The report will show what your AHI is. That's a measure of how many apnea/hypopnea events you're having. If your AHI is over 5, you might have more work to do. The report will show what your Leak rate is; find out the number and write it down. Ask whether the doctor thinks your pressure needs to be adjusted and why or why not.

Most important: get a copy of the report so that you can continue to ask specific questions about it here-- even post it here (after redacting your name/personal info) --- to get more feedback from all of us. After all, 1,500 brains are better than 1.

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Permalink Reply by Mary J on April 25, 2009 at 3:23pm

Thanks this is very helpful. Just one more question.....why are doctors hesitant to give you this information? And, if he hesitates.....what is the most appropriate response you can recommend.

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Permalink Reply by Dan Lyons on April 25, 2009 at 4:39pm

Mary J said:

Thanks this is very helpful. Just one more question.....why are doctors hesitant to give you this information? And, if he hesitates.....what is the most appropriate response you can recommend.

The short answer - LAWYERS.

The practice of medicine and health care is a major industrial complex and with it comes the pitfalls.

When you visit your doctor’s office and sitting in the exam room for the 10-15 minutes before they finally show up, read the placards they have posted in their offices. As a result of the actions of a few patients who have abused the system, the practicing physician only wants to be a doctor from 9-5, M-F. They have forgotten about caring. You must maximize your time with the physician.

When you question a physician concerning your treatment, some of them feel threatened and they immediately go into CYA mode. How dare you question their intelligence and years of experience? A good and competent physician will have no problem answering your question or sharing your file and data with you. One that won’t sends red flags up in my mind. What is he/she hiding from me?

As a patient you have a duty to arm yourself with knowledge and be respectful, but be persistent.

I recently looked at the schedule of seminars for a health care trade show. The majority of the seminars were ways in which providers can extract more money from the patient and insurance carriers. Do you see anything wrong with their concept?

Greed knows no boundary.

Unless you want to be just another victim, you have to stand up and fight back.

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Permalink Reply by Mike on April 25, 2009 at 5:06pm

I think it comes down to a combination of the doctor's ego and desire to monopolize control over information so that he/she is more powerful than you AND an irrational fear of our so-called litigious society. Let me tell you: I am a lawyer. I am not a trial lawyer, not a medical malpractice lawyer, but know a thing or two about the realities and practicalities of our legal system. And I constantly argue this point over and over with those in the health care system and am always amazed at how irrational the response is: yes, anyone can bring a lawsuit, but it takes a whole lot to bring a winning lawsuit: first, the doctor has to really screw up; second, the doctor not only has to really screw up, but screw up in such a way that other doctors in the same situation in the same community would look at what was done and agree, yeah, that doctor really screwed up in a way we wouldn't have under the same circumstances -- the so called ordinary standard of care in the community test. Third, the patient has to prove that the doctor's screw up caused the harm to the patient. Fourth, the patient has to prove the extent of damages the harm caused to the patient. Then the patient has to find a lawyer willing to take the case. That lawyer has to have enough confidence that the patient can prove up all this stuff so that the lawyer will actually get paid. Then the lawyer has to be willing and able to go through the painstaking task of documenting all this and persuading a judge or a jury to rule in the patient's favor.

Do you know how hard it is to do all that? Very. But walk into any medical practice in the country and the doctors will act as if every case is a winner and every patient is going to destroy their lives. The result: we all get bad information/deceived, and treated as if each and every one of us is not only going to bring a lawsuit, but that we're going to win! This is not the appropriate way for the medical world to engage in their day to day practices. In fact, it's a joke. But it's what almost all of us get for a standard of medical care. People put way too much stock in the power of our legal system. It's actually really tough for a regular person who doesn't want to blow their life savings on a lawyer to get anything done. It's a dirty little secret amongst us lawyers: we're not as powerful as you all imagine. But then again, if you guys all knew that, lawyers wouldn't get paid the big bucks, so hardly any lawyer will let you in on that dirty little secret. Trust me, next time you get a nasty-gram from a big name lawyer/lawfirm, try this: do nothing. See what happens. I'm telling you, it's more likely than not that you will call the lawyer's bluff then and there and never hear of it again.

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Permalink Reply by Mary J on May 2, 2009 at 2:27pm

I got a report on Sleep Architecture from my sleep study.
Here's what I have...and I'd love to get your feedback on this.

Total Recording Time 422 NREM 300 91.5
Total Sleep Time 328 min.
Sleep Efficiency 78%
Wake after Sleep Onset 65 min
Sleep Onset Latency 29 min

Total Arousals 215 39.3
PLM w Arousal 0 0
Total PLM 8 1.5

Respiratory Data

Supine Non Supine REM NREM
41 61.7 17.3 79.3 37.4

I belive 41 was my average....61 was on my back....79 was during my REM

Min SPO2 79.9%
Mean SP02 95.1%


My first visit....I was much better.....I believe he said 6/hour.....I plan to order the data software and reader to continue to monitor.....

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Permalink Reply by Mike on May 3, 2009 at 4:04pm

Mary J, i gave you some feedback on this sleep study on another thread

Mary J said:

I got a report on Sleep Architecture from my sleep study.
Here's what I have...and I'd love to get your feedback on this.

Total Recording Time 422 NREM 300 91.5
Total Sleep Time 328 min.
Sleep Efficiency 78%
Wake after Sleep Onset 65 min
Sleep Onset Latency 29 min

Total Arousals 215 39.3
PLM w Arousal 0 0
Total PLM 8 1.5

Respiratory Data

Supine Non Supine REM NREM
41 61.7 17.3 79.3 37.4

I belive 41 was my average....61 was on my back....79 was during my REM

Min SPO2 79.9%
Mean SP02 95.1%


My first visit....I was much better.....I believe he said 6/hour.....I plan to order the data software and reader to continue to monitor.....

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