Sleep Apnea Squad: Sleep Apnea Testing

Project Sleep Podcast
“Sleep Apnea Testing”
(Sleep Apnea Squad Episode 2)

Emma Cooksey is the Sleep Apnea Program Manager at Project Sleep and host of the Sleep Apnea Squad podcast series. She was diagnosed with obstructive sleep apnea at the age of 30, after more than a decade of unexplained health problems. Once diagnosed, she felt alone while navigating life with sleep apnea and adjusting to CPAP therapy. In 2020, Emma began hosting a weekly podcast, “Sleep Apnea Stories.”  By sharing her journey and encouraging others to tell their stories, Emma has been breaking down stereotypes of sleep apnea while also raising awareness of symptoms and treatment options. She is also on the Board of Directors at Project Sleep. 

Andrea Ramberg MS, CCSH, RPSGT has spent 16 years in sleep medicine, learning every component of polysomnography, from clinical to administrative. She is double credentialed with her RPSGT and CCSH and holds a Master of Science in Industrial and Organizational Psychology.  Andrea is EnsoData’s Clinical Director, and she joined the team in 2020 because of her passion for bringing Sleep Medicine into the future. From 2021-2023, Andrea served as President of the Board of Registered Polysomnographic Technologists, BRPT, and her goal is to empower sleep technologists in new roles through the CCSH credential as Sleep Coaches, Sleep Educators, and Sleep Navigators.  

Jody Martin is a husband, Marine Corps veteran, and business owner. He lives in Texas with his wife of 30 years, Rachel. In 2019, Jody underwent testing in a sleep clinic and received a diagnosis of severe obstructive sleep apnea. After a difficult start to CPAP therapy, Jody abandoned it. Later, when he tried to get help, he was told he would have to go through the entire process again, starting with his primary care doctor. It was a process he was unwilling to repeat. That was until he discovered Lofta, an online sleep apnea home testing company, and was able to go through testing, diagnosis, and getting set up on CPAP therapy entirely from home and with the support of Lofta staff. Jody is passionate about sharing his journey to encourage other people living with undiagnosed sleep apnea to learn about their testing options and get the testing, diagnosis, and treatment they need.

Podcast transcription provided by Mirela Starlight.
More information about Project Sleep’s Sleep Apnea Squad
Access the “Sleep Apnea Testing” toolkit
Project Sleep’s Sleep Helpline

Emma in intro: Welcome to the Project Sleep Podcast. For those of you who’ve listened before you might be expecting to hear from Julie Flygare, Project Sleep’s Founder and CEO, but for this special series of podcasts on sleep apnea topics, I’ll be your host. I’m Emma Cooksey, the Sleep Apnea Program Manager here at Project Sleep and I’m so glad you’re here. Project Sleep is a 501(c)(3) non-profit organization dedicated to raising awareness and advocating for sleep health, sleep equity and sleep disorders. 

Emma in intro: We created the Sleep Apnea Squad series to allow listeners to dive deeper into specific topics relevant to living with sleep apnea. For more on today’s topic please check out our corresponding toolkit which is available for free on our website to download, print and share. The link to the toolkit and other Sleep Apnea Squad topics is in the show notes, or you can find the Sleep Apnea Squad page at project-sleep.com. 

Emma in intro: On this podcast all guests express their own opinions. While medical diagnosis and treatment options are discussed for educational purposes, this information should not be taken as medical advice. Each person’s experience is so unique which is why it’s so important to consult your own medical team while making decisions about your own health. 

Emma in intro: If you haven’t done so yet, please hit the subscribe button so you never miss a Project Sleep podcast episode and if you enjoyed the podcast please leave us a rating or review wherever you listen so that we can reach more listeners and raise more awareness. So without further ado, here’s today’s Sleep Apnea Squad episode. 

Emma: Welcome. Today we’re going to be talking about sleep apnea testing. So if you tuned into our first Sleep Apnea Squad, we were talking all about, could I have sleep apnea? We were doing all about the signs and symptoms of sleep apnea, so this session follows on really neatly from that, because we’re going to be talking all about the sleep apnea testing options there are. So, to begin with, let’s just go around and maybe like introduce ourselves real quick. 

Andrea: Sure, yeah, my name is Andrea Ramberg. I have a sleep background, so I’ve been a sleep clinician for about 17 years, registered polysomnographic technologist, sleep coach, all that passion for taking care of patients. Then I’ll hand it over to Jody. 

Jody: My name is Jody Martin, I have been dealing with sleep apnea since— ’99, but have been being successfully treated for the past three years. And it’s changed my life. 

Emma: Right on. So I’m going to just do some introductions here for our two guests. So Jody Martin is a husband, a Marine Corps veteran and a business owner. He lives in Texas with his wife of 30 years, Rachel. Jody initially underwent testing in a sleep clinic and received a diagnosis of severe obstructive sleep apnea in 2019. After a difficult start to CPAP therapy, Jody abandoned it. 

Emma: When he tried to get help he was told he would have to go through the entire process starting with a referral from his primary care doctor. That was a process he was unwilling to go through again, and that was until he discovered Lofta and was able to go through testing, diagnosis, and getting set up on CPAP therapy entirely from home and with the support of Lofta staff. 

Emma: Jody is passionate about sharing his journey to encourage other people living with undiagnosed sleep apnea to learn about their testing options and get the testing, diagnosis and treatment they need. And Jody ended his bio with a quote, and honestly, like everything Jody does just always makes me cry. But he said, this treatment has changed my life. It has given me back a relationship with the love of my life that we both thought was gone forever. Which is so nice. 

Emma: So Andrea. Andrea Ramberg has spent 16 years in sleep medicine, learning every component of polysomnography. From clinical to administrative, she is double credentialed with her RPSGT and CCSH and holds a Master of Science in Industrial and Organizational Psychology. Andrea is EnsoData’s Clinical Director, and she joined the team in 2020 because of her passion for bringing sleep medicine into the future.

Emma: From 2021 to 2023, Andrea served as President of the Board of Registered polysom— I can’t say this word— Polysomnographic Technologists, and her goal is to empower sleep technologists in new roles through the CCSH credential as sleep coaches, sleep educators and sleep navigators. So thank you both so much for being here. 

Emma: Okay, so I’m going to just do a really quick overview here, of some of the themes that are going to come up in our discussion today. So, first of all, I think we’re going to be talking a bunch about testing at home versus testing in a lab. So that’s probably going to be a lot of what we’re talking about. And then I think also important to that is, how you’re paying for sleep apnea testing. 

Emma: So whether that’s through insurance coverage or whether you’re having to pay out of pocket. So we’re going to kind of talk about like the pros and cons of each. And then lastly, something that comes up a lot I feel like in Project Sleep’s work is just advocating for yourself in medical settings. 

Emma: So whether it’s getting tested in the first place, or the referral you need for testing, or requesting further testing, there can sometimes be a need to advocate for yourself so we’ll probably touch on that too. 

Emma: So before we get to Jody sharing his story of his first full experience of polysomnogram testing, I thought we could start maybe with Andrea and just have you start with what the PSG test is, and— just kind of like a little bit about like what the sensors do, the reason someone might have one of those tests, and what kind of things it can pick up, and that kind of stuff, I thought that would be really helpful. 

Andrea: Yeah, thanks Emma. So there are different testing— so if your physician thinks, hey, suspected sleep apnea, but there’s also other sleep disorders— there’s many, numerous— we do lots of things when we sleep. So that physician might order what we call an in-lab PSG. And what that is, is you come into the lab, you sleep overnight, in your own bedroom right, they kind of make it feel like a hotel. 

Andrea: But they are hooking up wires to you to be able to see whether you’re sleeping or awake. There’s a bunch of EEG leads that they set on there, and that’s going to tell us what stages of sleep you’re getting into, are you hitting your REM cycles, are you going in and out of your sleep cycles at 90 to 110 minute fluctuations. There’s a lot that we could tell about an individual of how they’re sleeping with that. 

Andrea: And then there’s also— we put leads for like, muscle— so any tension, any like grinding of your teeth— there’s leads on your legs, are you kicking your legs, like restless legs can translate into not being able to get very good sleep at night ‘cause you’re moving around a lot which is miserable. 

Andrea: And then we also put on an airflow monitor, ‘cause that’s going to tell us, hey, how are you breathing, and are you stopping breathing. Is there any gaps in your getting that oxygen within your body. And then there’s also two belts. Because as you can imagine, if your body does not get that oxygen— if your body’s not getting that breath of air— it has this mechanism to keep you alive, it’s a survival thing. 

Andrea: So your body is going to really try to get you to breathe again and to wake you up. So those chest belts help us see that, and it also can help us to detect different types of apnea as well. But so from that then, there’s also the HSATs, but I’m not quite sure we’re quite in there yet. 

Emma: So yeah, that’s good for now, ‘cause I think we’re going to have Jody just kind of go through his experience of that test. So Jody, if you could just share with everybody a little bit about what your life was like before you even went to doctor or got tested. What were the symptoms that you were dealing with, and how was that affecting your life in terms of work and also in family life. Could you maybe just set the scene for us?

Jody: So I’ve got the perfect story for that actually. In 2008, we traveled— I was changing jobs, you know the economy had just tanked, and I was leaving South Carolina. We were coming to Arkansas and I was— had to travel to Arkansas to have an interview. And so, of course my wife and two daughters went with me. Money was tight, because changing jobs— so we get a hotel room, so I can get a few hours sleep before I go to this interview. 

Jody: And the kids pile in bed with her, we get a room with two beds and I’m in the other bed, and I’m sleeping and— all of a sudden— this violent strike to my forehead awakens me. As I— you know, shoot straight up in the bed, and I see three heads in the other bed start pretending like they were asleep. Because my wife had taken a coke bottle, she was just going to toss it over and kind of hit me and kind of wake me up because I was snoring so loud, but her aim was truer than she thought it would be, and it hit me right in the forehead. 

Jody: And that’s the way it had gotten to. It had gotten to where I snored so loud, and so hard, that— if we went anywhere, and got a hotel— I had to have a separate room. Because no one could sleep. We went on a vacation and got a cabin at the lake, and it had a bed on the covered front porch. Guess who got to sleep on the covered front porch. And, you know, and it was— it had gotten to the point where— we didn’t sleep in the same room anymore, at the house— one of us was always on the couch. 

Jody: And I would always tell her— she’d wake me up, you know, you’re snoring, I can’t sleep. I’m like, well I don’t— I’m not trying to. You know, if I could control it, I would. And finally she’s like, we’ve got to do something. You’re stopping sleep, you’re stopping breathing in your sleep— you’re gasping for air, and— I had heard of sleep apnea, but you know I really didn’t— this was 2012, ’14— somewhere around there. 

Jody: You know, I’d heard of it but I didn’t really know what it was. I just thought it meant you snored a lot. And so finally, I said okay, I’m going to do something about this. And you know, I’m a Marine Corps veteran, I was raised on a farm. I’m a foster kid, I was raised by foster parents on a farm. 

Jody: You know, I’m pretty— I’ve been pretty self-reliant since a young age. And asking for help is not one of my big traits. So finally I went to my family doctor, who’s a friend— which is not always a good thing. You know, sometimes, doctors that are friends— don’t have as much perspective as— someone that’s a complete stranger, you know. 

Jody: And he’s like, you sure you’re not just snoring, you know maybe you need to lose a few pounds. I’m like, no, it’s beyond that. And so, I finally got him to give me a referral. So in the little town we lived in, I had to go to a— there was actually a sleep— well it’s called Arkansas Medical. And I went over there and they have a whole sleep study place, but they don’t do the sleep studies. 

Jody: They have you fill out a bunch of paperwork and then— then they take a couple blood samples, and then you— basically talk about taking naps, and stuff with them, and then they decide okay, you do need a sleep study. And so then it was, go ahead and make an appointment for the sleep study, and go to the hospital one night. 

Jody: And then they wrapped me up in the wires, and— you know, put me in a in a nice sterile, ice cold room, and I laid on the hard bed with a SpongeBob pillow— and they said sleep! And I said, okay, (laughs) you bet. But I was able to go to sleep and you know, the guy told me— he was real nice, he said look I’m going to watch you sleep, we’re going to see how you—how everything works, and then— you know, about two or three, I’m going to come wake you up and we’ll put you on a CPAP and see if we can get some levels adjusted. 

Jody: So I fell asleep roughly 10 o’clock. Okay, this little guy is shaking me, violently, and I wake up, and I’m like, huh? And he’s like, we’ve got to get you on a CPAP now. And I’m like, wow I must have really slept hard. Because, you know, it seemed like it hadn’t been 15-20 minutes. I said, it’s 3 o’clock already? He goes no, no it’s 10:30. He said, but I was scared to watch you sleep and I’m scared you’re going to die. 

Jody: And so they ended up putting me on a BiPAP and basically just cranked it up all the way. And so I had to go back to the Arkansas Medical place to lease my BiPAP and have it set up. And they did. And they— supposedly set it up to the way he prescribed it. I took it home, I started to use it, and— it was unusable. 

Jody: It was blowing so hard, that one, it took forever to try to get to sleep— to try to get used to it. But as soon as I went to sleep, it would blow my airway— if I ever swallowed once in my sleep it would blow my airway up and it would completely fill my stomach full of air. And you wake up and you’re belching, you got heartburn, and just— and it was just— and so I called them back, and I called the people I got the CPAP from, and I said look— I just need you to turn this down just a hair. Just a little bit. And that’s when I was informed—

Emma: Sorry to interrupt you, Jody, but I just want to double triple check that I’ve got it right. So, you went to your primary care physician—

Jody: Mm-hmm.

Emma: —they sent you to the sleep clinic or somewhere, that then referred you for the sleep test in the hospital—

Jody: Right. 

Emma: —then, now you’re talking about a company— like a DM— a Durable Medical equipment company, we call it—

Jody: Yes. 

Emma: Who actually supplied the CPAP. 

Jody: Right.

Emma: Them that you’re calling back to ask for help. 

Jody: Right. because they’re the one that set the CPAP up. 

Emma: Yeah. 

Jody: I was like, if you could just turn it down, just a little bit, so that it doesn’t fill my stomach up, I think I can I can try to get to use this thing. 

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Emma: A lot of patients, myself included, have a situation where if they struggle— I’ve been on CPAP successfully for 16 years now, but certainly my first month was really difficult. And so for me, I find that I was kind of going round in the circle, where I would ask the Durable Medical Equipment company, who set up the CPAP, for help— and they would send me to my doctor, and my doctor would send me back to the Durable Medical Equipment Company. So I think a lot of patients do find themselves struggling with that kind of, you know, thing going on. 

Andrea: So the tech that took care of you, that would have been someone like me, right— that’s with you overnight. And we would see these patients over and over, and a lot of them —you knew something was wrong, right. Like you knew hey, this is not normal that I can’t sleep next to my wife, that— and you know, you’re maybe having all these other feelings— you go to seek out treatment, you talk to your doctor, you get the sleep test. 

Andrea: But it’s still— really powerful for individuals to understand just how severe they are— to your point, they woke you up, and put a mask on— that doesn’t happen to everybody. You know some people don’t have sleep apnea, right. Or some people aren’t as severe and they have to come back for another one. So what that CPAP mask was doing is your airway was collapsing so frequently and so often, causing those oxygen desaturations— that you needed that. I’ve seen patients stop breathing up to 2 minutes.

Andrea: And I always do a test of like, could you do that sitting here. No. So it’s amazing the stress that you’re putting on your body over and over. And it sounds like then they switched you to a different mode of treatment, so there’s different modes, you know, with all that. And Bi-level is— you know, it can be harder to tolerate. For some individuals it’s easier, some harder. That goes up higher. So patients get stuck in this care plan. Get primary care, no that’s the Durable Medical Equipment, no, you got to go back to the primary care. 

Andrea: Because the primary care and that physician is the one that’s ordering it. The one that’s saying yep, I want you at this certain setting with that. And that’s why the Durable Medical Equipment can’t touch it. Because they need that physician order. Well, unfortunately that physician, especially a primary care, isn’t as well versed in sleep medicine. There’s a shortage of sleep medicine physicians, everywhere. 

Andrea: So they don’t understand some of those components. So you heard Emma say at the beginning, on the concept of like a sleep coach, that I’m a part of— that’s technologists and clinicians that actually can follow that patient, with it. So to help them— you know, a doctor’s time— they’re strapped, they’re whatever. So allow certain clinicians to help you out with that journey. And to troubleshoot some of that stuff. 

Andrea: We’re actually seeing a lot more success with keeping patients compliant with that. So I would suggest anybody in the audience that might be having some trouble— there’s help out there. There’s a lot of tips and tricks that a clinician can help you with that maybe, you know, you weren’t aware of. Breaks my heart, you know. I love to help patients and—

Emma: Yeah, so it’s okay because it has a really good ending. (laughs) 

(Andrea laughing) 

Emma: We’re only partway through. So Jody, one of the things I didn’t cover with you, what— if you could just share with everybody— this first time that you had the full, like overnight study in the hospital, this was covered by your insurance, right. I’m getting— I got a nod before he went. So yeah. 

Emma: All I wanted to do was— kind of contrast my experience— I’ve only had one full PSG test overnight and I think that my experience was probably better than Jody’s, largely because—I, at this point had already been on CPAP for so long, and when I went in for my test, the reason was a bit different. So I’d already had the diagnosis with a home test. And so the reason I went for a full in-lab study was I was trying to have my pressure titrated. 

Emma: So we talked a little bit about that with Jody where he— they put a CPAP on him or a BiPAP on him and they were trying to get the pressure correct. So anyway, so when I went in they were doing this titrating study. And that’s really something that can only be done— like that can’t be done with a home test. So I kind of knew why I was there, and was prepared for what it was going to be like. And so I had a fairly good experience, like I had a really great sleep tech that was helping me and I think if you know what you’re expecting it can be a little bit better maybe. 

Emma: And the other thing I thought I would mention is, I don’t think many people— I didn’t know this, but I actually paid for my full polysomnogram out of pocket. Like I always thought that you must pay with insurance but I did an interview with Dr. Sahil Chopra from Empower Sleep and he said, well, the problem I was having was having a high deductible. So me and my husband being self-employed, we had a very high deductible, kind of catastrophic plan. 

Emma: And when my sleep specialist sent the order for the sleep study— to have this titration done— I was quoted $2,300 and I hadn’t met my deductible and that seemed like a lot. And so Dr. Chopra had told me, call them up and say I would like to pay in cash. And so that’s what I ended up doing. So I think— you know, just to kind of let people know that that is actually an option, because I don’t think most people know. 

Emma: But yeah, so my experience was probably a little bit better than Jody’s and I think a lot depends on kind of what you know ahead of time. So yeah, I wanted to go back and maybe have you, Andrea, explain the other testing options. So we’re going to talk a little bit about home testing now. So we’ve talked a little bit about in-lab testing. So I’m going to have you explain it because you’re an expert and I’m not, but my understanding was always that home pulse oximetry testing didn’t used to ever be diagnostic. 

Emma: But I think with some new technologies— that the PPG, I think it is, EnsoData and Sleep Image are also doing a similar thing where they’re able to do a diagnosis with level four test too. So maybe just give us an overview of like what makes something a level three or a level four test. 

Andrea: Yeah, definitely, and you know a quick segue into this, it’s— you know, I feel like us in the community, we hear about obstructive sleep apnea all the time, right. Like everybody’s got, or somebody knows somebody with a CPAP, and— all of that. But the truth of the matter is 80% of the population is seen as undiagnosed with sleep apnea. Which blows my mind, a lot of it. Because we’ve heard from Jody, we’ve heard from Emma, and you know there’s just a lot of stuff— that quality of life stuff, that comes with having untreated sleep apnea. 

Andrea: So part of what we’re doing in the sleep field is increasing access to care. And that’s where some of these home sleep study units came in. Because not everybody can go into a lab. We have rural areas where they’re hours and hours away from a lab to get that treatment. This expands a lot of access to care. 

Andrea: So that difference between that in-lab study is it’s actually a unit. In the level three, there’s— you would go into the lab, in some cases and they would educate you, show you how to use it. But it’s basically just an airflow, a thermistor that you put on, a pulse-ox, and then a belt that you wear with like the module thing. And you take it home, and you sleep with it in your own bed, which can actually help. There’s something called the first night effect where— you know the in-lab is obviously not your usual thing, but you’re still wearing stuff, right, so it still could be a little bit hard. 

Andrea: And the difference too is there’s no EEG with that, with the sleep— but there’s different parameters, and I’ll go into that with the PPG, that we could detect whether you’re sleeping or awake. And then there’s that level four, and that’s that pulse oximeter. And it’s funny, I think a lot of people are saying that’s new technology, and what I found, and you know the more that I did my research, pulse oximetry actually has been around since like the 1970s. (laughs) 

Andrea: It’s the stuff that you wear— it’s the same kind of concept that you wear in the hospital. So if you go to a doctor’s office, they check your Spo2 levels, you go into a hospital. So there’s certain technology within there and without seeing your eyes glaze over— (laughs) because this is— but basically, it’s testing the different blood volume in your fingertip and how your heart pumps your body— the blood to the different parts of the body— that can tell us a lot more than what we ever thought possible. 

Andrea: So to that point, those level four HSTs are a lot smaller, So it is like rings that you wear, just a simple watch. So instead of that annoying thing that’s sticking up your nose it’s something that can be very, very easy. And, you know, again— some people— individuals choose to get it shipped to their home. You’re doing your consult with your physician, maybe through tele-health, they ship it to your home. A lot of these units, the best part about these new units coming out is you could do it multi-night. 

Andrea: So instead of using it one night, the multi-night can show us the variability, there’s a lot of new research coming out that we vary night to night with what— how we present with our sleep, depending on bunch of outcomes, right. Or a bunch of factors. So doing a multi-night sleep study is really important too, just to see how you vary. This new study came out that— I want to say like 50% change severity, of OSA, from night to night. Which is kind of crazy.

Andrea: And then there’s also— one important thing to note is if you do get an HSAT and it comes back negative, it isn’t— that doesn’t mean you don’t have sleep apnea. (laughs) It means—

Emma: This is what we want to spend so much time on, because the number of people I’ve talked to where they have significant symptoms, and they go and— you know they go through whatever channels to get this home test. And they’re just told, like it was— you know, it didn’t show that you had sleep apnea. And instead of— I think oftentimes, you know people have symptoms— there’s a reason they went in the first place, right. 

Emma: And there’s so many different sleep disorders that can cause a lot of those like daytime sleepiness symptoms. So if you didn’t get a positive sleep apnea test from a home test, it’s really important to go back to the doctor and advocate for yourself for more testing. 

Jody: People, listen. I’ve been there. Please, when you go to your hometown doctor, and you tell him you have sleep apnea and he says no, no, you snore too much and you have allergies. You say, no, no, no. That’s not it. Because there’s not— I don’t believe— there’s not enough small town physicians educated enough in sleep apnea to be able to tell you whether you should have a sleep apnea test or not. And I’m not— I’m not trying to hurt anybody’s feelings or put down anybody. 

Jody: The education level as far as sleep apnea has not been there for smaller hometown physicians and they think—man, I’ve been stuck on allergy pills, I’ve been given a— the little nasal thing where you got to wash your nose out, you know. That’s not— it doesn’t work. 

Emma: Right. 

Jody: You know, and the worst thing in the world— and I know there’s some people out there that feel this— is knowing there’s something wrong, finally getting up the courage to ask for help, and then to be told, well you’re just insane, there’s nothing wrong. 

Emma: Yeah. It’s the worst feeling. Because you start thinking like, it must be me. Like I remember being told, I went undiagnosed for like 10 years. And I remember being told, there’s nothing medically wrong with you, because they did a bunch of blood testing. And those words really made me kind of feel, well if there’s nothing medically wrong with me, there must be something mentally wrong with me, right. 

Emma: Or—like, you know, it’s my fault in some ways. So yeah, it can be a real challenge. And I don’t think it’s just small town doctors that you’re talking about, it’s honestly like primary care physicians don’t receive enough training in sleep, like across the country. It’s just a really big problem. So, Jody, I think we’d gotten as far as— you were describing your aerophagia, like of swallowing a lot of air and having a tough time with that— and so you really struggled with CPAP. So do you want to pick up your story, so that we can kind of get the next part of it. 

Jody: So, what had happened is, when I went back and they told me that I had to go see my primary care physician and do all over again—no. I’m out. I mean it was a six-month process to begin with. Start to finish, it was almost six months, door to door, and I’m like I’m not doing this all over again. I’m not going through— you know, I was like, yeah I’m done. I spent a bunch of money— I wasted a bunch of time, took a lot of time off work to get this done. I said, you know it’s just— it’s not in the cards. 

Jody: And so I just threw the CPAP in the bag, threw it in the corner, or actually it’s a BiPAP, but— I actually started fixing up our guest room as my bedroom. And started to decorate a little. And me and my wife, we’ve been married 30 years. I told her the day I met her I was going to marry her. I don’t care how much love you got, when you live like roommates, you start kind of treating each other like roommates. 

Jody: And it was one of those things that just— it just steadily progressed, and then— I got to the point where— I knew how bad it was getting because I would wake up in the middle of the night gasping, in there by myself— and I’d be like, oh, I must need some water or I had the hiccups, or no— but I knew what it was. It got to the point in my life where honestly when I stopped— I wouldn’t take NyQuil, I wouldn’t take any kind of cold medicine. 

Jody: I sure wouldn’t take like an Advil PM or anything like that. No Benadryl, anything that would make me drowsy because I figured that I probably wouldn’t wake up. And I had stopped planning vacations, planning on going anywhere, because I knew at any given night, there was about a 50/50 chance that when I laid down, went to sleep, that I wasn’t going to wake up. 

Jody: And I found out this later, and this this kills me— it breaks my heart, but my wife and my daughters would be— when I was taking one of my many naps during the day, if I stopped snoring, if somehow I hit the right spot where I didn’t snore, they would literally draw straws on who was going to come check on me. Because didn’t none of them want to walk in there and find me dead in the bed. And I— and that was my life for three years. 

Jody: You know, and living like that is a miserable— it makes you a mean, nasty, uninhabitable person that no one wants to be around. I really— and I’ve apologized to everybody profusely. But it still— there were still times where I was short and grumpy and yelled at people and— it’s kind of like the old saying goes, you know, if you don’t heal old wounds you’ll bleed on people that didn’t cut you. And that’s what was happening. You know they were there, they were close— I was frustrated and there was no one that I could take it out on. 

Emma: Thank you so much for sharing all this with us, it’s really helpful. I can’t tell you how helpful it is for people— there’s so many people that can relate to how you were feeling. So I just really appreciate you sharing your story today. So at that point, when was it that you became aware of this online testing option? 

Jody: My wife found Lofta on Facebook. 

Emma: Oh. 

Jody: And I was like, yeah okay. You know, the phone’s been listening to us talk about it, so, you know it’s going to throw up some ads here. And I said, all right I’ll send them a message. And I got in touch with them and they sent me a thing back and set up a phone call and I had a phone call with someone and I was like, okay they know something about sleep disorders because they asked me the right questions. And so for $148 they sent me a watch and a— a little watch with no numbers on it. 

Emma: So it has a sensor for your finger and one that kind of is worn like a watch, and then one that goes right here. 

Jody: That’s exactly what it was. So I get this and I’m remembering the test I took at the hospital and I’m thinking oh man, this is—laughable. You know, there’s no way this is going to work. so I Bluetooth to my phone—

Emma: You didn’t think that the little test was going to—

Jody: No. 

Emma: Okay.

Jody: I was like, this is a rip-off. They’re ripping me off. And then I started thinking about, I was like well I mean they’re only going to make 148 bucks and this equipment is probably worth that, so— I don’t see what they’re going to get out of it, but anyway. So I Bluetoothed it to the phone, I did my thing, and then you get a message the next morning, through the app, and it says it’s been sent in and it’s being processed, you’ll get a phone call within 24 hours. 

Jody: About— I don’t know, eight hours in, I get a phone call from them. They were really wanting to speak with me, and— then I got on there with one of their sleep coaches and they start going over the results and I could tell by his tone of voice that he was concerned. Because he kept stopping the call and he’s like, let me check with somebody on something real quick. And it said the first test I had 82 instances a minute. 

Emma: An hour.

Jody: And he’s like, every other breath— an hour, I’m sorry. He’s like, every other breath, you stop breathing. And I’m like, okay. And he said there’s some extended periods of time where your pulse-ox is dropping below 75. And he said that’s very bad. You know, and I was like, okay. 

Jody: Next question was do you smoke, and I was like yes I do. And he said, no you can’t. He said, with this, you’re really rolling the dice here. He said you’re already low on your pulse-ox, pulse-ox is going to be lower all the time because you smoke. And now with this, on top of it, you’re not going to be able to do it. I put them down that day, haven’t smoked since. 

Jody: Because I started looking at things different. And they said, okay we’re going to get you some equipment and I ended up buying the same exact machine from them. And I went back over the results I got from the hospital and the results they gave me were almost identical. I mean I didn’t really know what the numbers meant— but I knew the numbers were the same and, you know. 

Jody: I could go line by line and see that everything was just about the same. And so I said, okay well maybe this is real. They sent me the machine and— I got the machine, and I put it on and I went to sleep the first night and man, woke up with a belly full of air— and was just— heart broken. And so I get a call about two days later from my sleep coach from Lofta. And she asked me something that no one had asked me through this whole process. She said how do you feel? How do you feel about the whole—everything. 

Jody: And my wife hadn’t even asked me that because I don’t think she wanted to know the answer. And when she asked me that, that poor woman on the other end of the phone, got a 35 minute earful of everything. You know, and when I was done she said, do you feel better? And I said, actually I do, I feel a lot better. And she said now—

Emma: For sharing with somebody. Mm-hmm.

Jody: She said now forget all about that, we’re going to fix all this. She said first of all I’m going to teach you how to turn your machine down. We’re going to adjust it down a little bit so you can get some sleep. We’re going to get you a couple of good night’s sleep, we’re going to monitor it and make sure it’s working, and then if we need to turn it up we will. But let’s get you some sleep. And that night was the first night I slept in the bed with my wife, all night long, in probably 15 years. 

Emma: Wow. 

Jody: And it was— you know, to wake up, and the sun was coming up— and be able to see her face in bed with me, it was a— it was a moment that changed everything. It really did. I’m sorry, I don’t mean to get emotional it just, it—

Emma: It’s totally okay. 

Jody: It doesn’t— you know, when it happens like that for people. 

Emma: Yeah. 

Jody: I mean I’d given up. Completely. I was ready to go. Man I had lists, I had safe codes, I had everything wrote down— my youngest daughter knew where everything was— because she’s my buddy. And I was ready to go. 

Emma: So I think— this is just so— it perfectly illustrates exactly what Andrea was talking about with having sleep techs there, able to support, and just talk you through it, right. It makes so much— it makes a world of difference. 

Andrea: Yeah. 

Jody: The machine will never work if you don’t have a sleep coach. 

Andrea: Yeah. 

Jody: If you do not have someone to talk to, at least once a week, especially when you first start out. At least once a week. And say, hey, this ain’t right, or I think this is wrong, or—because people are so quick to give up on things that are kind of a pain in the butt anyway. That for— after I got my first couple night’s sleep, I got two big zits right here on my nose. And it hurt so bad. And she’s like, oh, your nasal pads are the wrong size. We just need to get you different ones. 

Andrea: Yep. 

Jody: Bam, 24 hours later—

Emma: Fixed it. 

Jody: I got nasal pads and she said I want you to get you some Vaseline— she said they even sell coconut scented, and just rub a little bit on there. And I would never have thought to do that. 

Andrea: Yeah, there’s a lot of little tips and tricks. So like I work closely with a sleep coach. I have been a sleep coach myself. I worked in the Durable Medical Equipment realm. But I work closely. And something that we do in the current organization that I’m working with, with artificial intelligence, is they’re better able to predict some of that stuff, some of those issues— but what I tell technologists and patients, too, is you can never take out that human interaction component with it. 

Andrea: So as we see technology shift, maybe not as many people are going in-lab and it’s HST and I’m working with these clinicians that are like, what is that— where does that leave me— I was like, right where you need to be, to talk to these patients— to be their sleep coach, to guide them. 

Andrea: There’s so many little tips and tricks that the physician isn’t even aware of, right, we’re the ones at night. We’re the ones that are in the lab troubleshooting with everybody. We know a lot of these little tips and tricks to help. And that just warms my heart even more that you had a sleep coach that made you— I’m going to cry now. Jody! But like it just— it makes—

Emma: I knew when I invited Jody on, I was just like, everyone’s going to be crying. But that’s— (laughing) 

Andrea: There’s such a big role and that— that warms my heart. And I want everybody to know out there, if they’re struggling, reach out. Because it really like— it’s the littlest of things that can make a really big difference.

Emma: Yeah. 

Andrea: And sleep coaches really care. You know, we’re in this sleep field for a reason, we want to see you be a success. We want to see you be back in bed with your wife—we want to see you live a full life, and see your grandkids, and— you know, there’s a lot of stuff that we’re invested in with that. And seek help.

Jody: Well you know the other thing of it, she was the first one— that ever asked me how I felt, you know. 

Andrea: Yeah.

Jody: Not about how I was sleeping at night or anything, but how I felt about the whole process.

Emma: Mm-hmm.

Jody: You know, and she— I mean I talked to her every week for a year. And then we went to every two weeks and stuff because everything got lined out within the first six weeks— everything was lined out. But there was times she’d call me, she’s like hey, have you been using your machine? Well yeah, of course I have. Well something’s not right. Well why? Because you’re grumpy. How many hours are you sleeping a night, you know. And she would—

Andrea: Yeah.

Jody: She kept me honest. And she would go over my results because they get it through the cellular data, they can see the results. So I can’t lie to her, you know. And so it was a— well especially guys, guys will tell you 100%— oh yeah I’m using it. You know, and they won’t use it. (laughs)  

Emma: So my last question for you Jody is, what would your message be to anyone watching this who’s in denial or is procrastinating about getting sleep apnea testing. 

Jody: Okay. I do have a message for people that especially are in denial. Snoring is never just snoring. Unless you’re sick. It’s something. If it is consistent and enough that people wake you up, or you have to go to a different room to sleep, there’s something wrong. You need to see someone. Because— you’re going to keep denying it, and you’re going to wake up dead. If there’s anybody in your life that you love, or anybody in your life that loves you, go get some help. It will change your life. Yeah, I look like Darth Vader when I sleep. Yeah, it’s a pain in my ass. But you know what, I’m here every day. I walked my daughter—

Emma: Thank you so much.

Jody: —down the aisle last Saturday. 

Emma: Yeah. So my experience with home testing was a little bit different from Jody, so I just kind of wanted to share that a little bit so that people can kind of see the different ways that people can get home testing. So in my experience I actually— so I think I think Andrea had touched on it, that oftentimes the sleep specialist will do an at-home test as a sort of first step. 

Emma: Probably not with every— maybe you can maybe speak to us about like, which patients get that and which don’t— but for me, I certainly like— I just wanted to explain that there— you know I used insurance and I went to my primary care physician, got a referral to a sleep specialist, and then the first thing they did was order a home sleep test. 

Emma: So I picked up the sleep test from the sleep specialist’s office, did it at home, dropped it back, and that was all covered under my insurance. There’s the way that Jody did it, and Lofta is not the only company— we’re a nonprofit and we don’t recommend one company over another, there are so many options out there— but Lofta is the company that Jody was using, so he worked with them through tele-health, got his home test sent to him, and then his diagnosis through tele-health, and then as he explained, he got his CPAP sent directly to him at home and got ongoing support that way. 

Emma: But certainly, it’s not the only way to do it I think is what I was going to explain. Oftentimes people think well, if they’ve had a home sleep test and it hasn’t shown sleep apnea there must be no sleep disorder. But it could be that they have a different sleep disorder, or it could be that they do have obstructive sleep apnea but it’s just not being picked up. So is that something that you saw in clinical settings?

Andrea: Yeah, absolutely, and I had alluded to this research, but something that shocked me, even clinically, was that 10% of individuals on their first night weren’t diagnosed with OSA from the multi-night variability. So, it’s so important to have that follow up with it. 

Andrea: Something else that we’re seeing is that women, often, are very underdiagnosed. Because they have a lot more, what we call upper respiratory. So they’re not the dramatic choking and gasping, and some do, right— like some have that. But women are much more subtle with theirs. They have just like a slight airway closure, but it’s enough to wake them up—you know, they still get oxygen desaturations.

Andrea: And something too, that once women hit menopause, they become just as likely to have severe apnea as men do. Men are much more likely, at a younger age, but once women hit menopause there are hormones which for different reasons that fluctuate, and— women aren’t talked about. Like every OBGYN should be screening their patients and they don’t, because women are very underdiagnosed. 

Andrea: So, with this, if you have a negative it’s never meant to like—okay, yep you don’t have sleep apnea. I would 100% fight for that in-lab. Especially with women with the upper respiratory, that in-lab can detect that a lot better than what these home units can, at least for now. We’re making a lot of technological advances. But it is so important to fight and advocate for yourself. 

Andrea: There’s other sleep disorders, I think OSA gets the— gets the limelight, but there’s a lot of other stuff happening in our sleep. Like REM Behavior Disorder, you know— sleep disorder.  There’s a central sleep apnea where it’s actually not your airway closing, it’s your brain telling you not to breathe, which is scary. There’s a lot of stuff that we deal with. 

Emma: So it is possible— there are certain home tests that can pick up central sleep apnea. 

Andrea: Absolutely, yup.

Emma: But I think that it’s more— I mean, I’ve mainly heard that people should be going for an in-lab study for that, or—

Andrea: Yeah, if you are diag—yeah, these home PPG units, with the organization that I work with, EnsoData—  the algorithm that— the PPG algorithm that they detect with that— we are able to see the central sleep apnea, and it’s based off just monitoring basically how your blood goes out to that fingertip, can tell us a lot. Like the rate, and the volume, and all of that stuff. 

Andrea: But, central sleep apnea should never just be treated with an AutoPAP. It’s actually a very different way of treating. So what they would do if that physician sees that, you’ll be brought back in the lab, most certainly— to be able to see exactly what’s going on. 

Andrea: There’s a lot of disease states that are correlated with central sleep apnea too, down the road, like Parkinson’s and different things like that. So yeah— there it could—Parkinson’s is a whole other thing but— (laughs) congestive heart failure and stuff, so there’s a lot of other comorbid issues that the doctor needs to keep tabs on. 

Emma: Yeah. So that kind of reminded me, when I was talking about the titrating study I did in the lab, that it actually showed periodic limb movement disorder, like that I never even knew I had because they have like— sensors on your legs and different things. So it is kind of amazing what it can pick up. 

Andrea: And I also want to frame too, for the audience— yes CPAP is going to be that gold standard that they first put on you, but there are other treatment options and that is something to discuss with your physician. It’s confusing, right, it’s confusing, I get it.

Emma: So confusing. 

Andrea: So basically the difference between CPAP and BiLevel, you’re always going to be put on CPAP first unless there’s like some ventilatory issues and that’s a whole other subject. But the CPAP delivers one steady pressure. So what that flow is doing, is you’re basically—what’s happening is that soft tissue is collapsing, and that force per air that’s coming from that CPAP mask— is just going to keep that airway splinted open.

Andrea: So instead of allowing it to collapse. And that could be anywhere from 5 to 20 of pressure, obviously— as you can imagine the higher you get the more it feels like it’s blowing your face off. But BiLevel is actually meant for more ventilatory reasons and for individuals that maybe get up really high on CPAP, or perhaps they’re not tolerating it as well. 

Andrea: And BiLevel, the inhalation is going to be that higher pressure— and then when you go to exhale, it’s going to drop it by at least four pressure settings. So it makes it a little bit easier to breathe out against, and there’s a bunch of health reasons too—why your physician would want you to switch to BiLevel. 

Andrea: What we’re seeing now, in a lot of cases too is— patients are getting set up in what we call an AutoPAP. And what that is, is it just widens the range. So instead of that direct setting, it’s going to auto sense when you need more pressure setting, and raise it as you sleep, and then it’ll lower back down when you don’t. 

Andrea: So we’ve seen a lot of success with patients with that, preventing them of like, I can’t tolerate, stuff like that. There’s still stuff that the sleep coach can do to maybe lower those metrics instead of allowing the machine to go up to 15, 16. If they see with your downloads, okay you’re really sitting at the sweet spot of seven or eight, then I’m going to lower that— because you don’t need that higher pressure setting. So some of that is super useful too, as a patient as you’re getting set up. I’m so glad, Jody, that they taught you how to adjust your—

Jody: You said seven or eight, I’m at 17.

(everyone laughing)

Andrea: Well, yeah. So with that—

Jody: Seven or eighteen! 

(everyone laughing) 

Andrea: Yeah. I’m glad that your sleep coach kind of talked you through some of it. We don’t always go to every patient, ‘cause— we want to— it’s kind of like an experiment or research, you want to see that patient on certain things, to be able to dictate, right, like some of it. And getting that professional help is super important. But it could make a world of difference lowering it. The ideal is to get your number under five. 

Andrea: So you mentioned like, 80 something. We want under five but sometimes— let’s just say, you know what, we lowered it and your HI is staying at like 10, but you’re using it every night, and it’s way better than the 85— and that’s something that a sleep coach will take a look at— and dictate you know, what is success— what is the definition of success for that patient. 

Emma: So I think— that’s super helpful, thank you Andrea, for— just really quick, I was just going to say, a lot of it, I think— just having talked to so many patients going through this, a lot of it depends on geographically where you are. Because I— so certainly what happened with me was I started with my primary care physician, got a referral to a sleep specialist, and then they were the ones that dealt with anything to do with my CPAP, right.

Emma: So all my PCP would do would be get a report maybe from the sleep specialist, but they weren’t anything to do with the pressure settings on my CPAP. But I’ve talked to a number of people who don’t live close enough to a testing facility, where their primary care physician really is the one who’s doing the CPAP settings for them and all the stuff. So yeah, it really depends where you live. 

Emma: Like personally I feel good about having a sleep specialist involved, and I wish we had more of those specialist doctors. So I did want to just briefly touch on some other sort of ways to get tested, which are not as typical, but I thought it was worth mentioning that there are some dentists who offer oral appliance therapy who are able to administer home testing. 

Emma: Now the diagnosis and all of the reading the data and coming up with the diagnosis is done still by a sleep physician, but it’s just worth mentioning that that is a pathway that some people are using, where they’re seeing a dentist who’s able to. Now it’s not every state, I believe Ohio, New York and New Jersey— they’re not able to do that, but in the other states, dentists have started doing that. So just to be aware of that. 

Emma: And also a CBCT scan, so that’s not a diagnostic test, it’s not a thing that’s going to get you a diagnosis with sleep apnea, but that is— since we’re talking testing— that is a test that often oral and maxillofacial surgeons might use, or dentists or orthodontists. If you’re having maybe a double jaw surgery, or surgically assisted rapid pallet expansions. 

Emma: And another one is the DISE procedure, so a Drug Induced Sleep Endoscopy. Again, that’s not going to be used as a diagnostic test, but some ENT surgeons will use that. Especially if they’re looking at people who are looking at the Inspire implant or another ENT surgery. They do use the drug induced sleep endoscopy for that. So I just wanted to kind of touch on those just to be complete. So here I’ve got a few— we’re just going to wrap up, was there anything else, Jody or Andrea, that you feel that you didn’t touch on.

Andrea: Yeah, just real quick, I do want to add, a lot of individuals have been hearing about the Apple Watch that was just cleared to be able to detect OSA. And they are saying moderate to severe, and it is again not a diagnostic tool, it’s just more of a screening. So if you’re wearing it and it’s telling you that, it’s saying hey, go see your physician. But that PPG technology that I was referring to earlier, that’s the same— the same stuff. 

Andrea: It’s a different type of light wave length, with how it detects it. It goes into like different parts of the skin tone, basically, like with the blood volume. But that is something that it’s the same technology with that. So that’s really cool. I’m hoping that it allows more patients to say, hey— even if they didn’t go down the path of seeing their physician first, maybe that would make them. 

Emma: I’m really glad you raised that, I meant to bring that up, but yeah— so wearables in general, we can say are not diagnostic, right. So if you have a watch or a ring, and it’s like there’s a lot of different— there’s Oura Rings and a lot of different things, but those are not going to diagnose sleep apnea, right.

Andrea: Yeah, so there’s different— ensure that there’s medical grade. So the equipment that certain groups— that our group utilizes is medical grade. The oximeters that you have in hospital are medical grade. The Apple Watch is not. You know, so ensure that you understand like what’s cleared and stuff like that. But yeah, it’s always a good idea to follow up with your physician with it.

Emma: That’s super helpful, thank you so much for raising that. Was there anything else, Jody, before we wrap up?

Jody: Yeah, I just want to tell everybody— please get help. If you’ve got someone, and you know something’s wrong with them— please make them get help. Nag them. Nag them. Be the squeaky wheel. Make them mad, make them get some help just to shut you up. But make them get help. And as far as the Apple Watch and the—

Andrea: My family always (inaudible) when I come.  

Jody: —the Apple Watch and the Rings and all, that they’re not diagnostic, but they’ll tell you something’s wrong. My wife’s Coke bottle wasn’t diagnostic, but it told me something was wrong. 

Andrea: (laughing) Yeah.  

Jody: So just—please. It’ll change— I’m 50 years old, I feel better than I did when I was 40. I’ve quit smoking, I’ve lost weight, I’ve seen the country. Good Lord, people, if I’m not the poster boy for get a damn mask, I don’t know who he is.

Emma: (laughs) You’re a walking advertisement is what you are. 

Jody: Yeah, well it’s one of those few things that I never thought would be important to me but it’s become one of the most important things to me in my life. 

Emma: Yeah.

Jody: If I could start— if I could figure out a way to start a fund, so people that didn’t have insurance and couldn’t afford testing— or couldn’t afford the equipment, where we could raise money yearly and help people out, I’d do it in heartbeat. I’m just not smart enough. 

Emma: You’re plenty smart, Jody. So thank you so much—

Jody: I still keep my money in my sock drawer so—

(Emma and Jody laugh)

Jody: —don’t send me your money, please people, don’t send me your money. (laughing) 

Emma: So there’s a couple of things I just wanted to share before we wrap up. So, the AASM which is the American Academy of Sleep Medicine has this website where you can search for accredited sleep testing facilities. So that’s just a really good place to go to kind of check for stuff in your area. They’ve also got this patients guide to understanding diagnostic testing for OSA which I thought was helpful. So when we make our toolkit that we’ve been talking about, the links to those will be in it. 

Emma: And then I also wanted to highlight some of the other patient organizations here in the United States. So there’s the Alliance of Sleep Apnea Partners who are doing some great advocacy work for people with sleep apnea. And then also the American Sleep Apnea Association. 

Emma: So, just like Jody was mentioning, some people are in a position where they can’t afford their CPAP therapy and the American Sleep Apnea Association have a program where people can get the equipment that they need even if they don’t have the means. And similarly with the Reggie White Foundation they do a similar program. So I just wanted to highlight their work. 

Emma: And then, if you’re tuning in and you’re in a different country then there are a lot of different international organizations that you can connect with. And again we’re going to include all of those in our toolkit. 

Emma: I wanted to just say that, a lot of what we’ve been talking about is navigating to sleep testing options, and so here at Project Sleep we have a really good resource for that called the Sleep Helpline. So you can either call or fill out a web form or email and our staff member will help— it’s not medical advice, or medical— you know, coaching or anything, but it’s navigational support to help you find the resources you need in your area. 

Emma: So if you’re looking to get tested, they’ll be able to find some opportunities for you in your state and local to you. So I really recommend you reach out, if you need any help navigating all of this. And it’s worth saying we’re a 501(c)(3) nonprofit, and we’re so grateful for the support of our individual donors, and also to our corporate sponsors Lilly and Apnimed for making our program, Sleep Apnea Squad, possible.

Emma: And just finally, thank you all so much for joining us. And if you want to be kept in the loop about when the toolkit becomes available, or just more about our future sessions, you can sign up for e-updates and we’ll get the information to you by email. And also if you’re going to share on social media about your life with sleep apnea we’d love to follow along, if you want to use the #SleepApneaSquad, we’d love that. So thank you all so much for tuning in.