Patient advocate and co-founder of Alliance of Sleep Apnea Partners
I was at a movie theater with my wife. And I turned to her and said, “Marjorie, when is the movie starting?”
Can you guess what her reply was? “Two hours ago.”
It wasn’t a memory gap; I had been asleep. I was knocked out, lost consciousness. My wife reminded me that once when we were at a friend’s house, I had been sitting in a chair and just fell asleep. She said I would fall asleep at dinner.
So I went to my primary care physician and said, “I don't know what this is. But I'm sick and tired of it, because it's happening to me pretty regularly now.”
She set me up to have a sleep test.
I got all wired up. I had no idea—no one briefed me on what was going to happen in this test.
But that's pretty common, from what we've discovered.
I showed up for an overnight sleep study, put on my jammies, they wired me up with all the stuff for the device, put me in the room, and told me to go to sleep. I can usually go to sleep pretty quickly. And within less than an hour, they woke me up and said they wanted to make sure that I didn't die, because I had stopped breathing so often. They said, “We're going to put you on a mask right now.”
I’d never heard of a mask. I didn't know what CPAP was. I didn't know what any of this was. All I knew was that there was going to be this evaluation if I had some sleep disorder. So they put that on me. And then they let me go back to sleep.
They won't tell you what the result was. But they said that they stopped the initial test because I had stopped breathing so often. I think the number that finally got recorded was I had stopped breathing 54 times in an hour.
I got assigned to a sleep doctor, Dr. Suzanne Bertisch, which has turned out to be one of the best things in my life.
I had obstructive sleep apnea, and it was a severe case.
Once you sit with a sleep doctor and they interview you, you realize things. I realized that my father almost certainly had it. He would fall asleep at the wheel of the car. And both of my living brothers have sleep apnea. So obviously something was going on in the family.
I suspect my sleep apnea wasn’t all that pronounced, if it even existed, when I was younger. I always had a very active life. Obstructive sleep apnea mostly happens as your palate gets softer and weaker as you age, and it flops down—and that’s when something that was a latent condition becomes an active condition.
I got a CPAP, which was very matter-of-factly fitted by a DME, and got no other coaching. I’m one of those people who didn’t struggle with it.
About a year after my diagnosis, I told my doctor, “I really wish there were something I could do to help.” She said, “There’s a paper I’m writing, can you help me edit it?”
She also mentioned my name to Dr. Susan Redline, who later invited me to participate in several projects that related to sleep, and I also became a counselor for some people who have sleep apnea.
I’ve learned two things. One is that almost every doctor is trying to do the best he or she can with you, and therefore you have to participate in your own treatment as completely and as honestly as you possibly can. That also means you have to be prepared to take responsibility as a patient. You as a patient need to know your medications, you need to be following the prescription, you need to be providing feedback.
The other thing—I guess the big thing—is that I always ask doctors, “Have you had this experience yourself? Do you have this condition?” Almost invariably, except for dentists, the answer is no. Therefore, they need to develop a sense of empathy, not just sympathy, for people who are usually struggling with the condition.
There's an awful lot that we don't know. My colleagues are telling me—and I use the word “colleague” to embrace the scientists, the clinicians, the research statisticians, and the patients and caregivers—we’re discovering that as patients often we're providing important feedback to doctors. But they just don't want to hear things like, “This is uncomfortable for me” or “I’m drying out” or “This mask doesn't fit” or “I can't tolerate the mask.”
A big part of it is that clinicians need to listen to their patients.
If you look back at the history of sleep apnea and its diagnosis, we essentially have gotten it more or less wrong all the time. It isn't only overweight men with 17-inch necks who are over 50. I've met people as young as 17 who have sleep apnea. I know someone whose daughter has sleep apnea at seven. So it's a matter of this is a much more complex condition.
I have one colleague who kept going to doctors who kept on saying she was being treated fine, but it turned out she wasn't. She has both complex and obstructive sleep apnea, and as a result she has to go to a doctor in Boston who has to tune her mask, tubing, and CPAP combination to get the right level of CO2 into her system.
When you’re breathing, whether you are asleep or awake, there are a lot of things happening in your mouth, your nose, and your throat—they’re all related.
Therefore, your dentist, your primary care physician, they all need to know about each other’s work with you and that you have been diagnosed with sleep apnea.
I’ve trained to be a “buddy” to help people who are newly involved with CPAP, someone they can call or send emails to, and you can reach out on a regular basis to see how they’re doing. That can be important, because if you're all alone in the middle of the night, even if you've got a bed partner, you can really feel that you're completely unsupported and unattended. It’s good to be able to have someplace or someone you can reach out to.
We’ve discovered there’s a lot that needs to be done and patients and clinicians all need to work together. People have opinions and want to share them. It’s been said that this is something that is emerging as part of the medical community that didn’t exist for a long time. In the past, you just did what the doctor told you to do.
But, unfortunately, often the doctors weren’t listening to you; they were just telling you what they thought, based on the limited information they took in when they weren’t listening to you. More patient voices need to be heard, and more people need to be engaged.