Jim was incredulous. “How many times did I stop breathing?”
I repeated my answer. “791 times over 7 hours. That’s 113 times every hour. Plus, your oxygen level went down to 59%, which is very dangerous.”
Jim was quiet for a few seconds. He then lowered his voice and asked, “My father had sleep apnea. I don’t want to use CPAP.”
This was one actual patient that I remember from a few months ago.
Being diagnosed with obstructive sleep apnea and using CPAP for the first time is like what you may go through after a death of a loved one, a divorce, or a major job change. It’s a major life change, and there are common stages that everyone undergoes. Mike Moran posted a very insightful essay on CPAPtalk.com which I’ve summarized here, called the The Seven Stages of CPAP:
1. Denial. This is a common trait with many sleep apnea sufferers. The last thing you want to admit is that you snore like a train. Snoring is something everyone laughs about and you don’t want the embarrassment of being the brunt of a joke.
2. Realization. Your spouse tells you that you are constantly gasping and choking at night, and after doing some research, you finally realize why you’re so cranky and tired during the day. Learning about the dangers of untreated obstructive sleep apnea is an eye-opening experience.
3. Diagnosis. A formal overnight sleep study confirms that you stop breathing over 50 times every hour, with your oxygen levels dropping to levels below 80%. A CPAP study confirms that your apneas are completely controlled at the measured setting.
4. Frustration. This can start from the time you undergo the sleep study, or are waiting for the CPAP machine to arrive, and even after you start using your CPAP machine. It’s like waiting for a biopsy result after a breast or colon biopsy to make sure it’s not cancer. You’ll experience a combination of anticipation in possibly sleeping better for the first time in years, as well as the fear and anxiety of having to use a machine on your face for possibly the rest of your life. There can be a delay in your CPAP machine delivery, which only aggravates your frustrations. Once you start using your machine, you don’t get the relief that you’re expecting. There are a number of major and minor issues that you relay to your sleep doctors and your equipment company, but it’s been slow getting an answer from anyone.
5. Immersion. You work tirelessly with your doctors and equipment providers, bugging them to the point of possibly being annoying. You scour the internet and connect with other like-minded CPAP users, devouring as much information as possible to accomplish your mission: to get better sleep. You test various different masks or machines, different gadgets and other options that make your CPAP use more helpful.
6. Ownership. You take responsibility for your own care, and you don’t have to depend on your doctors or equipment providers. You still work with your healthcare providers, but you take the initiative to ask the right questions, and modify your treatment regimen to see what works or doesn’t work.
7. Inflation. You may get only a few hours of sleep in the beginning, but the periods are now getting longer and longer. You don’t wake up to a “wow” morning, but are beginning to realize that you’re not as tired in the late afternoon as you used to be, or you’re not falling asleep in certain situations. This stage can go in and out over time, but becomes more consistent as time progresses.
How many of you have gone through these stages? Which one was most challenging?