New to CPAP – The Process

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New to CPAP – The Process

Denial

Why is denial first? Simply because this is where many of us started. What we have is mostly “normal” for us, we don’t know any other way because it is the way it has always been. Occasionaly the root cause is something else and OSA sneaks in, but more often than not we have had it for a very long time. If you have any doubt, get a sleep test. My story: Like many here I did NOT have sleep apnea, I didn't stop breathing in my sleep, I didn't snore. Sound familiar. JUST to tell her "I TOLD YOU SO" I took a sleep study. I had 90 events per hour, an AHI of 90!! Go figure.

I didn't have a problem, I was driving off freeways at exits because I was driving to stay on the road. It was the rumble strips on the side of the city road that woke me up, rumble strips you ask, most know them as driveways, I was driving across driveways, and scared to admit it. 2nd sleep study, the titration study, and I woke at 5:30am actually feeling awake and refreshed, I was stunned! My DME told me 6-8 weeks to get a CPAP device and I said no way. I said find one elsewhere and I'll travel as far as it takes to get it. End result was about 1.5 weeks to get an appointment and the device, and I've never looked back. My Rx was CPAP at 18 cmH2O and I took to it like a duck to water. I was lucky, I was immediately feeling better. That was in 2003.

Your Doctor(s)

Let’s start with your GP (General Practitioner) or PCP (Primary Care Physician), the Doctor you see for most things. Talk to him/her about your symptoms, mention that your SO says you snore most of the night, tell him that you are really tired most of the day and ask if he/she thinks you might have sleep apnea. The goal is to get to the next step, the initial sleep study.

What doctors can write prescriptions for CPAP related issues? Pretty much any Doctor including.

  • GP
  • Sleep Specialist Doctor
  • Dentist
  • PA (Physicians Assistant)

It is also important to talk to your Dr. about your preference in machines to ensure that you do get the best device for your treatment.

Be aware that many sleep doctors favor a fixed pressure rather than an autoset. You may need to advocate for getting an autoset, which needs to be spelled out on your prescription. Advantages of the autoset include

  • It will adjust to your changing pressure requirements caused by sleep posture (ie back v side sleeping);
  • It will adjust for any changes in pressure requirement brought on by illness (coughs, colds, flu);
  • It will adjust for pressure changes required as you get older or gain (or lose) weight;
  • By changing pressure to respond to your needs, an autoset is a bit like a mini-titration test every night. Remember the pressure prescribed at your sleep test relates only to a particular snapshot of time, which may or may not be representative of your needs when sleeping in your own bed over a long period of time.

Initial Sleep Study (without xPAP)

You now have a referral from your Doctor for a sleep study. What do you do now? First the normal speed all this occurs at. I’ll put it Naval terms, Flank Speed means fast, get from point A to point b as fast as you can. This is where you want to be. Unfortunately the most common speed things move at is, again in Naval terms, DEAD SLOW. You need to expedite these steps so you can get them done and out of the way quickly. It is not uncommon for each step to take 1-2 MONTHS!!!

Types of Sleep Studies

  • In Lab Initial Study: IMHO the better choice, A study performed without a mask or xPAP machine to establish you base level of Apnea. For this you will be connected every which way you can think of, ok not every way but . .
  • In Lab Split Study: Actually two sleep studies in one night, At least two hours (per Medicare) without a mask followed by a titration study with a mask to determine your treatment settings. Sometimes there is not enough time left to perform the titration thus requiring a second night in the sleep lab.
  • Titration Study: a study with a mask to determine your treatment settings.
  • At Home: TBD

A Sleep Study (also known as a Polysomnography or PSG), is a multi-parametric test used in the study of sleep and as a diagnostic tool in sleep medicine. The test result is called a polysomnogram, also abbreviated PSG. The name is derived from Greek and Latin roots: the Greek πολύς (polus for "many, much", indicating many channels), the Latin somnus ("sleep"), and the Greek γράφειν (graphein, "to write").

Polysomnography is a comprehensive recording of the biophysiological changes that occur during sleep. It is usually performed at night, when most people sleep, though some labs can accommodate shift workers and people with circadian rhythm sleep disorders and do the test at other times of day. The PSG monitors many body functions including brain (EEG), eye movements (EOG), muscle activity or skeletal muscle activation (EMG) and heart rhythm (ECG) during sleep. After the identification of the sleep disorder sleep apnea in the 1970s, the breathing functions respiratory airflow and respiratory effort indicators were added along with peripheral pulse oximetry.

You will need to shampoo your hair after this study

Read this Wiki article, Sleep study, (also known as a Polysomnography or PSG) for a detailed description of the study.

Australia

Australian Medicare will cover some or all of the cost, depending on the exact nature of the test and whether the patient is an adult or child. Many sleep clinics will bulk bill the procedure cost, but check first.

If you have the test as a public patient at a public hospital, there should generally be no cost but there may be a long waiting list and not all public hospitals have sleep test facilities.

For private facilities, your private health insurance may cover some or all of the facility cost for the overnight stay. This will vary depending on the type of facility, your health fund and which table you are on. Check with the fund and facility prior to committing.

Your Diagnosis

Your diagnosis comes from your Initial Sleep Study

Here are the AHI levels of severity for Sleep Apnea:

Mild: 5-14
Moderate: 15-29
Severe: 30+

Read this wiki article on Sleep apnea

Second Sleep Study – CPAP Titration

Titration Study: a study with a mask to determine your treatment settings.

You will be "fully wired up". This is both good and bad. The good is that the study will show, and adjust to all the forms of sleep apnea that you have, very very good. The bad part is that you are doing these sleep studies "fully wired up" many, many wires to your head, torso and legs, on a strange bed, with a strange pillow, a video camera watching you all night, this odd (for now) contraption attached to your face, and you will even need help to go to the bath room. Have a good "normal" nights sleep (right. . . . . ).

You will need to shampoo your hair after this study.

The result of this study is a recommendation for settings that your Doctor will use for your Prescription. It is based on this one nights sleep and you will most likely be getting a prescription for a single, unchanging pressure to work for you for years too come.

Generally the Apnea Board likes to see an Auto machine prescribed, either an Auto CPAP, or when appropriate an Auto BiPap/BiLevel machine. The Auto machines may be run as a single pressure Fixed CPAP or in Auto Mode changing to your changing conditions. A short note here, in some cases a fixed pressure is the best solution (I didn't say a non-Auto machine). I am sure your sleep studies represented "normal" nights sleeping, right. . .

Note: This is an opportunity to try different masks on. Use it for this. The lab will get the data they need from any masks you use. The chance to try on multiple masks is few and far between. Take advantage of the opportunity to talk to your sleep tech, they work with many people that have never used a mask and are practiced at fitting them. Occasionally I have received the samples I tried to take home.

Prescription

Your Doctor now has the information he/she needs to complete your prescription.

Call your doctor and ask what machine he/she is recommending. If it isn't a fully data capable auto cpap, then don't accept it.

Be sure you know what the prescription says. The DME (Durable Medical Equipment) provider can only give you what the doctor writes on the script.
Just a heads up...a DME may try to give you a Cpap instead of an Apap (auto machine), or worse a "brick", this is a machine that cannot give you any useful data.

Read the wiki article for Prescription - CPAP - APAP - BIPAP

Australia

There is no legal requirement for a prescription to purchase a CPAP machine or supplies in Australia. Notwithstanding this, some sleep doctors try to pretend there is a requirement and some suppliers (such as CPAP Australia which is owned by Resmed) require a prescription.

Your DME

The DME (Durable Medical Equipment) supplier is your source for your equipment if you are insured. Other sources are available if you are not insured or choose to make a private purchase.

The DME is obligated to provide what your doctor has prescribed, no more, and no less. They are not allowed not to. The main issue is with the DME's interpretation of this.

You need to communicate with the DME to let them know what your expectations are, read the Prescription - CPAP - APAP - BIPAP wiki article. You also need to communicate with your Dr. about your machine preference.

For example, if your Rx is for a "CPAP" with Humidifier, in the ResMed line you could get

  • AirStart™ 10 Auto CPAP with HumidAir™ Heated Humidifier (you do NOT want this machine) $400 retail May 2017
    • Compliance Data to SD Card
    • NO detailed efficacy data, which is used to identify alterations and tweaking of your treatment.
    • Operation Modes
      • Fixed CPAP only
  • AirSense™ 10 AutoSet CPAP Machine with HumidAir™ Heated Humidifier $883 retail May 2017
    • Compliance Data to SD Card
    • Advanced Data
    • Operation Modes
      • Fixed CPAP
      • APAP
    • Detailed breath by breath data indicating how you are responding to all breathing events thru the night

The DME gets paid, from your insurance, the same for both of these devices, which do they make more profit from?

Your leverage: You have a choice of which DME you use, you can always use another DME, if you do so the original DME makes nothing.

If your prescription states a specific model and states dispense as written (DAW), the DME has no choice.

Australia

Medicare does not cover the cost of a CPAP machine, though there may be special payments available if you are in financial difficulties. Check with your friendly CentreLink office.

CentreLink may provide a subsidy towards the running cost of a machine (currently $157 pa) - Essential Medical Equipment Payment

Many energy suppliers also provide substantial discounts for eligible users - eg Synergy in WA offer up to $300 pa

Your health fund will make a one-off payment towards the purchase of a machine. This varies from $150 to $1,000 depending on the individual fund and the table you are on. Some funds require a doctor's prescription or statement of medical necessity. A few require proof of compliance. As always, check with your fund before committing.

DVA Gold and Silver Card holders may be eligible for a free machine. Check with DVA.

Most sleep clinics also supply machines. This can lead to a conflict of interest so consider if it is better to buy from an independent supplier. You are under no obligation to buy from your sleep doctor or sleep clinic.

There are many on-line suppliers in Australia, usually with well designed web sites which make buying simple. Prices and services vary a lot, so shop around.

Many pharmacies also supply CPAP machines and supplies, along with some form of diagnostic and advisory services.

Check if your supplier has a free trial period or rental arrangement, to ensure your machine is suitable before purchasing.

Compliance

Compliance is simply using your xPAP device for a period of time. If you are serious about your therapy you will be using your CPAP all the time. If you don't use it it cannot help you. Insurances including medicare do not want to pay for an expensive medical machine so they have a compliance requirement.

The actual definition of compliance varies and not all insurance companies require it so check. The most common definition is the medicare definition

  • Compliance is measured over a 30 day period
  • xPAP is used 70%+ of the days
  • xPAP is used for 4+ hours every night

Your Therapy

An AHI of under 5 is considered "Treated", but many can get much lower. No one gets a 0.0 AHI any more than very rarely, though many get under 1.0 - 2.0 with occasional excursions higher. The excursions are typically of no concern, but do watch your average readings. Average readings going higher is a reason to re-evaluate your settings.

A typical initial Rx for an APAP setting of 4-20 cmH2O is good for a day or 2 while you see how the machine reacts to you. IF you are having trouble and feel that you are not getting enough air the minimum typically should be raised to 6, if 6 still seems too low try 8.
If you are having trouble you should initiate an inquiry on the forum ( http://www.apneaboard.com/forums/Forum-Main-Apnea-Board-Forum )

Your therapy is your therapy, it is unique to you. The Rx you start with is just that, a starting point. It was likely determined at a sleep lab, in a strange bed, a strange pillow, with you wired up to a lot of instrumentation, with your ability to change position hindered by all the attachments, let alone a mask and hose on your face for the first time, and breathing with a machine blowing in your face, yea I'm sure that was a real normal night (sarcasm intended). Even with this your initial Rx from that sleep study is a good place to start.

The Help button at top of page, where you will find many "how to" articles is another excellent resource.

For suggestions to tune/tweak your settings the best thing is to make a forum query. ( http://www.apneaboard.com/forums/Forum-Main-Apnea-Board-Forum ) Read the below suggestions.

  1. Start a new thread. Add all your inquires to this new thread because this will retain your history for us in the responses to your queries.
  2. If you don’t have all this info don’t worry about it. As a general rule the more info we have, the better the advice you will get.
  3. Using multiple posts is acceptable.
  4. What type of Apnea do you have? (Obstructive, Central, Complex, Hyponea, RLS) Have you posted your sleep studies? (They have this information) If not post your Sleep Studies. It is especially important to know if you have Central or Complex Apnea.
  5. Include your daily charts. They include a lot of data that is used as the basis of advice delivered
  6. How do you feel? This relates to all things comfort and intangible things (my nose hurts)
  7. What do you want to know more about? What's giving you the greatest difficulty?
  8. Don't use the "Reply with quote" button if you don't know what you're doing! That's why we have threads, the info is in the above posts (history).