Here is my list of the TOP FIVE things I consider important information for anyone starting out on positive-airway pressure (or, PAP) therapy:
1. DOCUMENT AND RESEARCH: It is your life, so get complete copies of your sleep tests and your prescription so that you can study them and research the specifics of your condition.
2. FIND THE RIGHT MASK: The mask is the key to successful therapy, so either use mask insurance if you buy online or only deal with a local durable medical equipment company (or, DME) that will let you trade in a mask that you can’t make work for you within 30 days, at no cost to you. The first mask you get may not necessarily be the perfect one for you, so don’t judge the therapy based on your first mask. Even with the right mask, you may need to practice putting it on, and it may take several nights for you to get comfortable with wearing it all night.
3. GET A FULL-DATA MACHINE: Your having a machine that can give you leak and apnea-hypopnea index (or, AHI) data will allow you and your medical team to make sure your therapy is as effective and comfortable as possible. Your local DME may not understand that concept (or may pretend not to, for financial reasons), so be sure to get a list of in-network DMEs from your insurance before you speak to any DME. That may allow you to push for a full-data machine, or perhaps allow you to shop around in the interests of fostering healthy competition among businesses. Some users have found it cheaper for them in the long run, and less frustrating, simply to buy their own equipment online instead of paying their insurance co-payments at local-DME prices. Some users have even found ways to get reimbursed from their insurance for online purchases.
4. GET THE RIGHT KIND OF MACHINE FOR YOU: Straight pressure as delivered by a regular continuous positive airway pressure machine (or, CPAP) does fine for most people with obstructive sleep apnea (or, OSA). But many have found great benefit in the use of an APAP (auto-adjusting machine), and many with high-pressure prescriptions (over 15 cm H2O, for example) have benefited from the use of a bilevel machine (also called Bi-PAP or VPAP). Machine users with a high number of significant central apneas may do better on specialized machines designed to deal with that problem.
5. DON’T THINK YOU HAVE TO GO IT ALONE IF YOU HAVE DIFFICULTIES: Your doctor works for you. Your DME works for you. They can’t help you if you aren’t being sufficiently vocal and specific about your needs. Furthermore, online forums exist for you to get quick help from fellow patients any time you need it. Please don’t give up without reaching out to (1) the professionals you have paid to be there for you or (2) the fellow patients who pride themselves on being helpful to other patients in the forums. Online, you can find helpful hints such as this one: “Don’t set your ramp setting too low (or set your starting minimum pressure too low on an APAP), since that might make you feel starved for air or even keep your machine from taking care of your apneas as well as it otherwise could.”
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Linda
Mary Z.
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