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an online version of the magazine Fall 2008
Features
A Silver Bullet for Blake with Photographs by Keith Weller  
 
  Nancy Collop says sleep apnea is vastly underdiagnosed. She says it causes car crashes, weight gain, heart attacks, even brain damage. Will the latest home testing device help her reach the untreated?

BY Ramsey Flynn
Illustration by Jim O’Brien

 
 
 
 

Oooh, goody, I think sarcastically. Now I get to help answer my own apnea question! As I unravel the thing from a black pouch about the size of an overnight shaving kit, it strikes me as akin to an early iPod, but with wires and chest straps and a decidedly geriatric-looking transparent nasal cannula splayed onto the living room couch as I study the apparatus. It looks sort of complicated. It comes with instruction manuals. This is going to require some homework. Oh, goody goody goody goody….
 “Goodnight, honey,” says my wife, slipping out of the room.

It’s late on a weeknight, and I am not going to put Betty through this rigmarole. I have come to accept that she is an innocent bystander, as it were, a noncombatant. As she and one of our boys migrate up the stairs, I shuffle to the basement couch, resigned to my uncertain fate.

On the surface, at least, this was all Betty’s fault. She says my snoring drives her nuts. She says it becomes even more alarming when I stop sometimes—actually stop breathing sometimes—with many seconds passing before I lurch back into the bone-rattling arias. She has seen the reports that this could mean trouble, especially for a post-cardiac case like me. I got the faulty ticker fixed here at Hopkins when I was 39. I’m 51 now and thicker around the middle, but still don’t fit the sleep doctor’s idea of a classic apnea suspect, which would veer toward men who are heavier, maybe diabetic.

But like so many other men who currently dominate the condition by three to one, I was outed by my wife. The snitch. I sheepishly reported her concern to my doctor, and now I’m in this fix.

Of course, getting to the bottom of such fixes has long required a fancy overnight study in a well-equipped sleep lab. The suspect patient is tethered head to toe with 14 sensors and tracked by a ceiling-mounted infrared video camera so human monitors can record the subject’s behaviors throughout. Like many apnea suspects, I’d rather not, thank you. Other would-be candidates for diagnosis are impeded more by physical disabilities or live too far from sleep centers, so the apnea diagnosis industry has been energetically tinkering away with these portable devices in a bid to win broader acceptance.

In March, Medicare aided this bid with a quiet decision to accept this portable technology as a viable, ostensibly low-cost alternative to the full overnight lab workup. While the experts have been slow to embrace the idea, the popular conviction is that the sleep apnea currently confirmed in about 19 million Americans is only the tip of the iceberg. Sleep experts think the condition bedevils an additional 80 percent more whose afflictions go undetected and untreated. Will this new-fangled tool help find more of us?

 

*****

 

 

THE STAKES ARE no small thing, as the laundry list of ills associated with sleep apnea continues to grow. The most common are chronic daytime sleepiness with compromised executive function, excessive napping, and an increased risk of diabetes, hypertension, stroke, heart attack, and death. The latest reports even suggest that sufferers of untreated severe apnea are five times more likely to die of any cause—mostly through an acceleration of cardiovascular issues—than people without the condition. But as if these odious consequences aren’t enough, new research has just added another disturbing dimension: Sleep experts at UCLA have reported that brain scans of patients with untreated apnea have shown shrinkage in an area of the brain known as the mammillary bodies, a primary seat for the human memory. Oh, joy.

So where were we? Oh, right. How to fix this.

On the day when I visit the Johns Hopkins Sleep Studies Center on the bottom floor of the East Baltimore campus’s Outpatient Center, I am greeted by clinic director Nancy Collop, a pulmonologist with a low-key manner who strikes me as somehow Midwestern, despite her upbringing in rural Pennsylvania.

She says her quiet nerve center at Hopkins is busy and getting busier. “We have a lot of patient traffic,” she says, showing me one of the six Spartan sleep lab suites where patients can be hooked up and studied. “Demand is growing, and we think it’s very untapped.” Collop says about 3,500 patients come to the Hopkins sleep clinics here and at the Bayview campus annually, with about 2,500 qualifying for the overnight lab studies. Of those, 75 percent are diagnosed with sleep apnea.

Five practitioners preside over the East Baltimore operation, including three pulmonologists, one neurologist, one nurse practitioner, and a staff of seven sleep lab technologists.

Collop’s matriculation into the field has been a simple matter of following her medical curiosity from her days as a young medical student in 1980, when she became fascinated with a specialty that targeted a large population with a mysterious range of problems, many of which could be fixed.

One of the most dramatic of her cases came several years after Collop’s fellowship, when an obese woman in her 30s arrived suffering from a case of obstructive sleep apnea so bad that she couldn’t stay awake for longer than several minutes in a single stretch. Collop, et al performed a tracheotomy on the patient, dramatically improving her condition.

I decide that I don’t want to be that dramatic. In the course of our discussion, I tell Collop about Betty’s accusations and my heart doctor’s referral. I tell her I’ve heard about these dreaded forced-air sleep masks that keep apnea patients’ airways open all night so they never miss a breath. I tell her I hope I don’t need that. She tells me she understands. I tell her I’m really hoping I’m just a complicated insomnia case. She nods blankly.

Sigh. So we talk about the diagnostic options. I’m most fascinated with the portable device that Collop says is poised for greater use. Her team has successfully deployed it with in-patients undergoing treatment for other conditions, typically involving issues where sleep disorders could be an underlying factor.

She has never sent one of her own patients home with such a device. We decide that I will be her trial case.

 

*****

 

 

BUT FIRST, A CONFESSION: Before Nancy Collop sent me home with this portable new testing unit, she put me through the traditional full overnight lab study. In a follow-up, she told me the results showed an average of 26 hourly disruptions to my sleep over a seven-hour period. She described a choppy and inefficient “sleep architecture,” with the well-known five main stages of sleep only roughly discernible amid the cacophony of disruptions charted along a nine-line graph documenting my sleep patterns.

To Collop’s calibrated eye, the charts told an apnea story, but she allowed me a modest ray of hope. She said the study indicated my case was only moderate, and the study’s video images showed the disruptions were mostly linked to my sleeping position, peaking when I was on my back and fading when I shifted to my side.

This complied neatly with Betty’s observations. No problem, I thought. I only slept on my back in the lab to avoid disrupting the gazillion wires attached to my limbs and gelled into nine points around my skull to capture the brain waves. I can commit to sleeping on my side. Apnea no more!

Not so fast, said Collop, introducing me to the newfangled portable device that we’d agreed to try out. If I could defeat this lie detector in a home test, Collop might be willing to review her diagnosis—or, perhaps, to do a second round in the sleep lab where I’d make special arrangements to sleep on my side. I took it home with mixed feelings. It could become my friend or enemy.

I’d had good reasons to hope for insomnia. I thought it was the preferable alternative to apnea. I’ve had the insomnia since childhood, mostly manifest in various night owl behaviors: When the sun went down, my imagination lit up. My thoughts and visions could keep me entertained, or anxious (or both), or obsessively tinkering with pet projects until 3 a.m. or so, even on school nights. In trying to accommodate the demands of a daytime world, I’d adopted the mantra that real men don’t need sleep, which helped me get by on less than an hour on many occasions. More recently, I’ve made peace with a resigned acquiescence to sleep aids like Ambien.

Collop tells me that insomnia and sleep apnea are sometimes related, sometimes not so. The relationship between the two is the subject of much debate and too little research. In any case, insomnia is the second most common medical complaint (after pain), and apnea is the second most common sleep disorder. Up to 25 percent of the patients referred to Hopkins’ sleep disorders center are trying to cope with insomnia.

To Collop, I remain an apnea suspect until proven innocent. If proven guilty, she says, most apnea-related insomnia is improved as a natural extra benefit of fixing the apnea; and the gold standard treatment for apnea is the “continuous positive airway pressure” therapy, the acronym for which, CPAP, has become a common buzzword in the apnea industry.

I’m not happy at the notion that a CPAP mask might be in my future. But if it has to be, I’m hoping it gives me a two-fer—apnea eradication and deeper sleep with less reliance on sleep aids.

 

*****

 

 

ON JUDGMENT DAY, Collop ushers me into the monitoring suite on the first floor of the Outpatient Center and opens the file folder with all of my records. She points to the more data-rich lab-suite charts—which look something like crude sheet music—drawing my attention to the distinctively thick clumps of ink that rattle across the pages for a half hour or more. The rhythmic ink clusters denote a heavy vibration. “Heroic snoring,” says Collop. She also picks out the traces that show rapid eye movements or limb movements, apparent responses to “whatever was chasing you that night.”

And she homes in on the 26 instances per hour of choppy tracings that unfolded in the lab, the data that first qualified me as a likely apnea case.

I hold my breath. Did the portable home monitor confirm or acquit?

“It shows a very good study quality,” says Collop as she reaches for the more sparely rendered charts from the portable monitor. She explains that, because the device only has three sensors that track six physical parameters, the techs have no indicators of the patient’s brain activity. This means they can’t tell when I’m asleep or awake. But they can see snoring, and breathing, and the level of blood oxygen that registers through the fingertip sensor. Collop points to a cluster of traces that I can see look like anomalies. “That looks for real,” she says. She says they found an average of 15 such anomalies per hour. Fourteen is enough to qualify. Yup, I’m in the club.

 

*****

 

 

ON THE MORNING of July 11, a very nice tech adviser visits me at home

1 collop
Collop's verdict on the hometesting unit: "I think it's a good studyto rule in apnea, but not to rule out."

and presents me with the nifty new technology that will become an important part of my life. I am now the proud owner of the Resmed Elite II, a swanky navy and white contraption about the size of a shoebox that displays a higher number of control knobs and dials than the average clock radio. This one even comes with a custom humidifier attached, the Humidaire 3i. It sports a sticker with a boast: “20 percent MORE humidity!”

The adviser, Kevin Ryan, smartly guides me through a 60-minute orientation about the care and feeding of this finest of CPAP devices. There are only about 2,000 such units out there so far. It requires layers of routine careful cleaning and refills with distilled water. Ryan proceeds to demonstrate how the various mouth and nasal elements need to be soaked in soapy water every week. At one point he disassembles some pieces, peeling a soft sliver of silicone away from a harder plastic structure of some sort. “You can see underneath this bridge here,” he says, “how the pillows fit underneath of there.”

He shows me how to assemble and disassemble the humidifier, a process that reminds me of the lunar module linking up with the space station.

He can see my eyes glazing over. “I know this looks like a lot,” he says, “but you’ll see that it quickly becomes a routine that you don’t even have to think about, like brushing your teeth. And I guarantee you’re going to sleep better.”

With the lesson fresh in mind, my maiden voyage happens that night. The machine “ramps up” in perfect silence, its progression to my prescribed air pressure indicated only by the LED readout in a little window on the Elite II’s topside.

When I wrap the mask’s straps around my head and snug up the nostril components, I lean back on my pillow and briefly interrupt Betty’s book reading. “Does this mask make me look fat?” I joke. The words come out breathier than normal because of the pressured air filling my trachea, sort of like a bad caricature of Marilyn Monroe.

I sleep, perchance I dream, even. I manage to maneuver the hose during the night so I can shift positions. The machine stays quiet, except for when the fittings slip and the escaped air hisses. It stops my snoring cold, thrilling Betty, rewarding her snitchery. When I take it off in the morning, the mask releases one sustained gasp before automatically sensing the disrupted pressure and shutting down in about five seconds. This is not so bad, I think.

In the coming days and weeks, I enjoy better sleep, with less reliance on sleep aids but no complete release from insomnia. Perhaps better, my clearly improved sleep architecture seems to be paying other dividends. I get a growing number of days without temptations to nap, and with increasing episodes of the mental agility that I had when I was still in my 30s.

So while I adapt to my new Spiderman mask, what about the upshot of our little experiment with the new portable diagnostic trick?

 

*****

 

 

NANCY COLLOP, of course, has been closely following the portable technology’s development for some years. She even chaired a committee for the National Sleep Disorders Association in devising guidelines for its use with home patients. Those guidelines were published in a January sleep journal, and the anecdote provided by our test has not dramatically affected her take on things—yet.

She says she might consider the portable monitor as a preliminary diagnostic method for ruling out apnea in certain patients. The challenges to even this level of acceptance are manifold, she says. First, she’s not happy about the absence of brain wave data; she really wants the full picture. Second, she doesn’t think all patients will be able to follow the device instructions properly when suiting up in their homes. In those cases, she ventures, qualified techs could fit the devices onto the patients at the hospital and then send them home to sleep. Or the techs could visit the patients in their homes.

When conducted properly, says Collop, the diagnoses that result from the portable devices compare well with those of the full lab studies. But their deployment still poses “way more questions than answers,” she says. “Will these diagnose more cases or misdiagnose more cases?” she asks. “I don’t know yet.

“Medicare’s still struggling over what to do with all of this,” she says, hinting at the unsettled landscape that it poses in sleep medicine. “Insurers typically wait to see what Medicare will do. Are they good enough? I think it’s a good study to rule in apnea, but not to rule it out. If it’s negative, I’m still worried that I’ve missed you.”

I am just a single patient, but I can testify to this: The home testing unit is easy, so easy that I’d much more readily take the test in the at-home scenario than undergo the more elaborate ritual of a formal clinical suite.

Of course, if I came up positive on the at-home monitor and hoped to avoid the mask, I’d be inclined to appeal the ruling to the full lab work-up, sleep apnea’s higher court.*

 

 


 

 
 
 
 
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