‘Scared and vulnerable’
For Sabin Orr, having a stroke at age 33 was only the beginning of a nightmarish slog through the health-care system
Thu, Dec 3, 2009 (midnight)
Photo: Beverly Poppe
When Sabin Orr came to Las Vegas in 2006, he was drawn by a chance to make a better living. He was a photographer, plying his trade in the Midwest. The excitement and visual splendor of Vegas promised more opportunities. Piece by piece Orr built a name and practice for himself, shooting portraits, food, you name it, for magazines and corporate clients across the city. The year before he got to Vegas he made just $17,000. Now he had earned enough to buy a car and a house. And to finally buy some health insurance.
For years building his career was his first priority. He didn’t think much about his health. After all, young adults generally don’t get sick. Sure, there are aches and pains. The occasional broken bone or pulled muscle. A hangover or two. But something more serious is a possibility few people under 35 or 40 spend much time considering. An avid golfer, Orr kept himself in good shape. Other than recreational drinking and a fondness for steaks and burgers, he was a healthy, normal 33-year-old.
Until the day he wasn’t.
May 27. Orr has had headaches and migraines before, but today he feels something new, an “intense pain that happens to be in my head.” It’s centered in the back base of his skull to the top of his neck. It never leaves.
It’s a product of stress, he decides. After all, the night before he did a big shoot at the pool at the Palazzo. It was a long day in the heat. He hadn’t eaten much. Probably he’s dehydrated. On that day he’d felt fine. When you find yourself at the beginning of a serious health problem, and you’re healthy, and the day before you felt fine, in full command of yourself, it’s hard to understand the switch, to not see it as a momentary glitch in an otherwise functioning body.
On the 27th he flies to Chicago to visit friends and prepare for a new photo assignment. He goes to bed early, but the next day his head still hurts. He takes ibuprofen, but “it wasn’t cracking it one bit.” He golfs with buddies and feels drained, lethargic. A day later he’s tired and his head still hurts. But he pulls himself together for the photo shoot, portraits for a nonprofit organization that promotes minority diversity in the workforce.
After the shoot he goes home to Alton, Illinois, a Mississippi River town of 30,000 just north of St. Louis, where he grew up. He describes the pain to his friends: It doesn’t ebb or flow, but it spikes if he stands up or climbs stairs. Maybe it’s his lower back—he has a bulging disc and has had serious back pain before. He’s read that back pain can migrate up toward the head.
With that in mind he sees a chiropractor back in Las Vegas, on June 16. His chiropractor tells him he may be suffering from occipital neuralgia, an inflamed muscle in the neck that can pinch a nerve and result in head pain. So, to try to relieve the pain, he does a heavy massage on Orr’s neck before adjusting it.
By the time Orr is heading outside, he’s dizzy. On the drive home, he can’t recall what the chiropractor just told him. Is the adjustment supposed to bring immediate relief? He’s starting to feel woozy and out of it. He keeps driving. Now he’s light-headed. Irritable.
By the time he gets back to his home in Henderson, near the corner of Eastern and St. Rose Parkway, he knows something is wrong. But not really wrong. Maybe it’s hunger, he decides. So he makes some Sloppy Joes. But while he’s cooking he notices he has a blind spot—about 15-20 degrees to the right. He can’t walk a straight line on the tile, either. The pain is intense.
“Being young and unaware I have no idea what to put this toward.”
He’s not thinking he needs to go to the hospital, only that he needs to contact the chiropractor and make another appointment. Soon. But by the afternoon, while he’s playing golf with some friends, the dizziness goes away.
A few days later he returns to the chiropractor and tells him how he’s feeling. The chiropractor used to work in a stroke rehab center. It sounds to him like Orr is describing a mini stroke. Shocked, he tells Orr he needs to get checked out right away. He knows Orr doesn’t have insurance, so he offers to help arrange some tests for him.
Over the next week, while waiting for those tests to be scheduled, Orr notices that he can trigger bouts of extreme dizziness by cocking his head to the left and up. It goes away if his neck isn’t tilted that way. Eventually he tries to make sure he doesn’t fall asleep with his neck in that position. If he can manage the dizziness, all that’s left is the head pain. Sometimes it’s so intense he can’t even talk—and yet even that, by and large, is starting to feel, mostly, like some kind of normal.
June 24. Orr wakes around 6. something’s wrong. He feels hung over. Maybe his head moved into a bad position overnight. His knees are up to his face, his head’s in the pillow. Hot flashes roil through him. He’s nauseated. He’s tries desperately to, as he puts it, “reset” his body, his neck—to switch off the pain. But he can’t. Finally he gets up, crashes into a wall and struggles to the bathroom. He can’t puke in the toilet because he needs something larger to balance against. So he does it in the bathtub.
Finally, a month after his head pain began, a new thought is in his head: “I need help. I need help now.”
If he can just get to a hospital. At this point, his mind is sharp in some directions and helpless in others. He’s really in no shape to drive, but he recognizes that he doesn’t have insurance yet. An ambulance would be expensive. The hospital is close. “That’s why I had it in my head, just get up and go.”
He’s wearing athletic shorts and a T-shirt. He tries to put his shoes on, but he can’t tie them and reaches for flip-flops instead. He leaves several messages for his ex-girlfriend. He lives with two roommates, but he doesn’t think to knock on their doors for help.
In the garage, he manages to get the car started, but he can’t remember how to open the garage door. The engine continues to run. After five minutes, he dimly realizes he shouldn’t be in the car with the garage door closed, but he can’t remember how to open it. He gets out to go back inside—the car is still running—and on his way back in, hands braced on the car hood for balance, he reaches for the door frame and manages to open the garage door.
So now he backs the car up. But his body is shaking, and he can barely keep his foot on the brake. He drives off with the garage door open. Orr lives just a few minutes from the Siena campus of St. Rose Dominican Hospital. He hits a few medians, parks crooked and stumbles into the hospital.
By now he’s having a hard time speaking. “I need help” comes out as a jumble, but two registered nurses put him in a wheelchair and rush him down to the ER.
“What’s wrong with you, sir?” one asks.
He really can’t talk. He’s shaking, convulsing, freezing—maybe he’s dying—and he can’t say a damn thing. But he’s not drunk. He has to let them know that. Because what else are they going to think? He’s an otherwise healthy man who’s dizzy and can’t stand and can barely say anything.
He manages to get that out. “I’m not drunk.”
“We know, sir,” he remembers one responding. “What seems to be the problem?”
He doesn’t know. He can’t say.
“Have a seat, we’ll get to you when we can …”
And so for the next several hours, Orr says, he waits in the hospital for someone to come and see him. He’s alone. Cold as can be. His muscles are going; he’s convulsing, moaning, holding his head. And, as he remembers it now, there’s no one, not one fucking person, who comes by to render assistance. The only person he interacts with is the security guard, who returns him to the wheelchair when he repeatedly tries to leave.
At one point, he remembers, a nurse takes him to a side room to check his vitals. He asks Orr questions, but Orr can’t answer.
“If you don’t tell me what’s wrong with you, I can’t help you …”
“I’m … trying …” Then he’s taken back to admitting.
Finally, around 11, he says, he has a CT scan. He also receives a spinal tap. One of the last things he remembers is trying to send a text message to his clients about a photo shoot he had scheduled that morning. His fingers are pressing at buttons … only the phone fell out of his pocket in the car hours ago. Finally he’s wheeled back into the ER. He doesn’t remember much from there, but he’s ready to stop fighting.
He comes to in the evening—no surgery, no operation. It’s unclear what has transpired in the intervening hours. His friends have arrived. His family is on the way. His medical records note a urinalysis, but he’s certain he didn’t give a urine sample.
In fact, later that night, he remembers being given a container to urinate in, but in his state he figures he’d pee all over himself—“I cannot piss laying down”—so he needs to find a bathroom. There’s one down the hall. To get there, he decides to remove the IV in his arm. He’s seen this done in the movies all the time. Just pull it out and you’re on your way. No big deal. Just be careful. Don’t want to rip a vein out. He works through the cobweb of tape on his arm keeping the thing in, and over the course of half an hour, manages to pluck out the IV.
Clutching his arm, he strolls down to the bathroom. His arm is bleeding profusely. Blood everywhere. He doesn’t notice. A paramedic sees him and his arm and asks, puzzled, “Can I help you?”
Orr responds, “Just need a bathroom.” He’s cognizant only that the hospital has been less than helpful, and he doesn’t want to get “caught,” but nevertheless four paramedics grab him and get him taken care of.
He spends four days at St. Rose. A doctor on the first night tells him they’re going to figure out why he’s having strokes, but no one has a great answer. There’s an MRI. There’s Tylenol. The head pain never leaves.
Strokes, which result when oxygen is cut off from the brain, are typically caused by either a clot (a blockage of a blood vessel) or a hemorrhage (when a blood vessel bursts), but doctors can’t find evidence of either. Strokes are not painful, but, Orr says, “I was in utter pain for those five hours.” An MRI shows lesions in his brain, which are caused by a lack of oxygen to the brain, but what caused the lesions?
One of the doctors tells him it will take two years for him to recover his functions. The brain will have to relearn how to walk, talk, make things. Orr is, to say the least, ambivalent about his time at the hospital. They ran the right tests, he says, but the promptness of the response was painfully inadequate. “Why the hell was I in the waiting room for that long time?” He notes that some drugs can be administered right away to declot blood.
Andy North, director of external affairs for St. Rose Dominican Hospitals, says patients are evaluated by a registered nurse within the first 10-15 minutes of their arrival. Basic tests—pulse, blood pressure—are taken, along with questions asked. This helps determine the proper treatment protocol, and determines the severity of the situation. More extensive tests—CT scans, blood work—may take a few hours to get results on.
North says St. Rose hospitals have the highest performance results among hospitals in the region/state. The Siena campus is St. Rose’s busiest—and best—trauma center.
“His recollection may differ substantially from what was recorded.” North says that federal confidentiality laws prevent him from commenting on specific cases. Since risk factors for stroke are pretty low among people Orr’s age, North says the RN may have had a difficult time assessing the situation. But, he says, the ER staff is trained to be responsive. “It strikes me as very unlikely that a clearly sick patient would not be seen quickly.”
June 28. Back home. His parents and one of his brothers have arrived. He’s used to being highly coordinated. Not anymore. He needs help standing up. He’s sleeping 16-18 hours a day. His speech is off. There’s no slur, but he can’t talk fast, and his words come out in a monotone. “I was … like … a tape ... recorder,” he pretends to drone. “Ten times worse than that.” He’s used to social drinking, steaks, burgers. Forget it. The new diet is no caffeine, no alcohol, no red meat and low salt. Over the next few months, the 5-foot, 8-inch Orr will drop 30 pounds, to 135. “I’m like Michael Phelps,” he laughs. “I’m ripped to the bone. I’m high school hot again. “
There are new medications. Meclizine helps with the dizziness. But Dilaudid, a form of morphine, does nothing for the pain. There are more tests. A test to see if there’s a hole in his heart. (Negative.) More visits to neurologists, who seem capable of little more than reading from a script of possible options and throwing up their hands in confusion.
But if the medical apparatus is leaving him with little comfort, he’s getting more than he expected from friends and family. He’s receiving hundreds of e-mails a day. Friends are sending prayers and wishes. They want to help. Send money. Anything he needs. One note, from an old acquaintance back in Alton, Katie McGovern, particularly strikes him with its tone of concern and humor. She asks what she can do. He asks if she can put a website together. McGovern’s an art teacher. She’s never put a website together in her life, but she says yes. She has a friend who can help. The site, sabinsstrokeofgenius.com, goes live in mid-July. It’s a voluminous account of his story.
McGovern knows Orr but hasn’t really been friends with him. And yet something about his plight clicks for her. “It’s weird getting involved with someone you don’t know too well,” she says, but she’s gripped by the simple fact that the work of helping him needs to get done. “And it started rolling. The more we stayed involved, the bigger it got.”
McGovern and her sister, Kelly Weirich, begin to plan a fundraiser. This despite the fact that McGovern works 45 minutes away from where she lives and Weirich is a stay-at-home mom with three kids. Weirich graduated from high school the same year as Orr, and she feels the same sense of urgency as her sister. “I didn’t want the newness of it to die down,” she notes. “I didn’t want that to go away.”
Alton was once a large steel manufacturing town, and in its early days was the site of one of the famous Lincoln-Douglas debates. It’s a town where people really do know each other, where community is not some high concept but a regular, ordinary thing. And this, along with a whole lot of hard work, makes the difference.
The women organize a committee to brainstorm ideas. There’s talk of a bar-crawl scavenger hunt. Or a Vegas-themed casino night. They finally decide on a golf outing. The sisters have a friend who has a friend who owns a local golf course. They get a great deal. Another friend knows everybody in town and is able to pull in donations for a raffle—Rams and Cardinals tickets, wine, custom wood chairs. Fifty local companies donate. There’s a kid’s bounce house. Free food. An afterparty. The event, held in mid-September, is a success. Orr greets people at the ninth hole.
The amazing thing is that many of these organizers haven’t seen Orr in years. And it’s not like Alton coasted through the recession. “I went into it expecting that we were really going to have to beg for stuff, but that was not the case,” says Weirich. “People were really generous.”
The fundraising committee hopes to raise $20,000 but winds up with about $13,000. But the website has gotten 16,000 hits and raised another $7,000 in donations. Weirich says they were “hoping that all our work paid off. I didn’t want all this hype to be not much money for Sabin. That was the most stressful part of it.”
If you’re judged by the quality of your friends, Orr has much to be proud of, and he knows it. “They threw one of the most complete organized events for a small town you could think of,” he says. “They put so much work, their heart and soul into this.” And yet, the road he faces is still a long one. “It helps take a lot of stress off, but that isn’t a fraction of what I owe.”
No matter how independent people are, we live our lives knowing there are systems that help support and sustain us. Personal systems, the people who help us when we need a job, who put in a good word, who take care of us when we’re sick, or down and out. But also the more impersonal systems we don’t think much about that form the backdrop of our day to day. The systems that maintain roads, water, schools and hospitals. Some services are provided by the government; some by corporations. We don’t think much about them until we need them, or until they don’t work.
The health-care debate can be thought of as an examination of which systems we most want to provide care for us. Are the great numbers of uninsured an expression of the failure of the social system to provide adequate protection to those who most need it, or are they a sign of the vitality of the personal system, where the healthy maintain maximum control over their health-care decisions?
Ironically for Orr, he had applied for individual insurance through Aetna and received word he had been accepted on June 24, the day of the stroke. Unfortunately the policy didn’t begin until July 1, so the stroke and its associated care was subsequently considered a pre-existing condition and wouldn’t necessarily be covered. Orr says he tried arguing the point—“I filled out the paperwork without a problem, you approved the paperwork because I didn’t have a problem”—but basically he’s over a barrel.
Before HIPAA, the Health Insurance Portability and Accountability Act, was passed in 1996, insurance companies had more leeway to cherry-pick healthy people for their plans and disregard the less healthy.
Under HIPAA, guidelines are tighter, but hardly foolproof. Right now, if you’re HIPAA-eligible—that is, if you lose group coverage due to being laid off and you use up COBRA insurance for the full 18 months it’s available—then private insurance companies have to offer you one of two standardized health plans. Of course, carriers can price these plans as they see fit, and they tend to be their most expensive plans. But Orr, finally getting any kind of health insurance, is not eligible under HIPAA.
Estimates vary somewhat, but according to a study for Great Basin Primary Care Association, prepared by Decision Analytics, Nevada’s number of uninsured in 2009 stands around 530,000 people (the rough mean of the study’s low and high estimates), a rate of about 18.4 percent. Next year, the range is expected to increase to between 20.4 and 20.7 percent.
Factcheck.org, run by the University of Pennsylvania’s Annenberg Public Policy Center, puts the estimate of uninsured in the U.S. at around 45.7 million (as of 2007), or roughly 15 percent of the population. According to Factcheck, two-thirds of the uninsured are near or below the federal poverty line, and nearly half are under the age of 30.
The system doesn’t seem adequately set up for people like Orr, who unexpectedly fall through the cracks. As it turns out, though, one of the most innovative programs to help the uninsured was started two years ago in Reno. The organization, called Access to Healthcare Network, brings together hundreds of health-care service providers, from hospitals to general-care doctors to specialists, to provide steeply discounted coverage for the uninsured. People who lack insurance have to meet income guidelines and pay cash up front, but they receive significant discounts. It’s the first program of its kind in the country that provides quality health care to uninsured people making between 100 and 250 percent of the federal poverty level. (Those making less can still benefit if they have a sponsor to guarantee the up-front costs.)
Most of the program’s 4,500 members are working. “We literally save lives,” says CEO Sherri Rice of Access to Healthcare Network. “We don’t care what preexisting condition you have. We take you with open arms.”
The program, Rice suspects, might have saved Orr thousands of dollars. Not much consolation for Orr, who estimates he’s racked up medical bills approaching $100,000, but he has caught some other breaks. A company partnered with St. Rose, called Medassist, picked up the tab on his stay at St. Rose and his ER visit. He’s been able to whittle down some bills, though he’s still waiting to hear from providers about how much. He figures he still owes between $25,000 and $50,000.
After he wrote a letter to Rep. Dina Titus, he was contacted by the state’s Bureau for Hospital Patients, a division of the Governor’s Office of Consumer Affairs. They can help with fundraising, and they can call to negotiate rates. He’s not sure they can really do anything for him that he and his family haven’t already done.
According to the bureau, uninsured patients are eligible for a 30 percent discount on their hospital bills, provided they let hospitals know they are uninsured at the time of treatment. Last month the office received 1,800 calls statewide; this is in line with an 11-15 percent increase in calls to the office over the last year. The program has saved people more than $2 million in 2009, and more than $33 million since 2000.
Orr’s applied for Medicaid, help through Clark County, even food stamps.
And the bills have a bearing on the health care he seeks now. The summer months were a series of visits to doctors. Doctors told him he was an outlier case. They ran out of ideas. Other than to run the same battery of tests he’d already had. Expensive tests, at that. He went to the Mayo Clinic in Scottsdale, Arizona. One doctor thought he had suffered a vertebral arterial dissection, which is sort of like a flap in the blood vessel which can constrict blood flow, possibly brought on by the chiropractic treatment of his neck. But tests came back negative. Tests to determine whether he had another condition, a patent foramen ovale, a hole between the left and right atria of the heart that may increase the likelihood of stroke, also came back negative. (He says Aetna did pay a very small portion of his Mayo bill, even though it didn’t have to.)
He began looking into his own heredity. His uncle died of a stroke at the age of 38, about 10 years ago, after experiencing head pains for two years. His dad has suffered three strokes, the first at age 52; the most recent was this year. He thinks he caused it himself with the way he positioned his head, though that doesn’t account for the weeks of initial pain he felt, when he felt like his head was going to “fucking explode.”
Most likely it was a clot, he thinks. But there are no answers as of yet. The tests cost a fortune. His doctor at Mayo suggested he get an MRI of his neck and chest (he had gotten one of his head) to check the possibility of the arterial dissection. Reluctantly he consented. (MRIs run several thousand dollars.) The doctor also suggested he redo the hole-in-heart test. He declined.
No answers, a reality that has left Orr feeling “scared and vulnerable.”
Amazingly, his body has made remarkable progress in five months. “I have responded miraculously. My body healed itself so rapidly. It has responded magnificently.”
His coordination and speech have improved. Even the pain in his head receded for a period. But it came back in October, now located higher in his head, left of center. It’s more intermittent, less intense, and it comes and goes. That same month he had something of a relapse, where he began to experience dizziness and his cognitive abilities slowed. He likens it to a 7-year-old trying to explain a philosophy class. “That’s what I felt like going across the room to get a glass of water.” He brought his file to St. Rose, and later to Southern Hills Hospital. But there wasn’t much anyone could say or do. Except run the same damn tests over again. He went home.
Orr’s attitude has been remarkable, but he can’t help but feel that as a member of the middle class, one of the unsung Americans who follow the script and play by the rules, he’s still getting hosed. He notes, a little ruefully, that he put himself through school, that he busted his ass for 10 years to achieve some success as a photographer. Even as he has benefited from the love of friends and family, and even to some degree from a system where deals can be made, it’s as if all that hard work still hangs from a pretty thin thread.
“I don’t have anything. All that stuff can be taken away from me because of the stroke. I’m going to be back to where I was, or even worse. And be living on my brother’s couch, my mom’s basement, my dad’s whatever. I was prepared to accept that, but it’s very disheartening, That’s a hard pill to swallow after 10 years grinding it out.”
As his body improves, he comes back to the reality of this terrible 2009 we’ve been slogging through. And yet even in the model touted by conservatives, where it’s the community that bands together, friends and family, the people who love you, such an outpouring of love and action cannot be sustained indefinitely. Its power is precisely in its rarity.
The logic of health-care providers limiting coverage makes sense if you accept that they are trying to turn a profit, they are trying to respond to shareholders, that they do well when they have more healthy people in the mix than not. They don’t want to be gamed by people who don’t pay into a health-care system and then sign up for insurance when they’re sick. And yet, shouldn’t the health needs of people be more important than the financial needs of the companies that respond to them?
In the weeks after his stroke, Orr slept a lot, watched movies, and when the website was up he turned his attention to that. Now he’s back to work, but work is down. He feels pretty good, and can put in a day’s work. But his energy is not up to the levels it was pre-stroke, and he still suffers from head pain, although not as bad as before. This week he’s going to see a vascular neurologist.
His mind is alive with possibilities. He’s thinking of starting a nonprofit with his brother. Maybe he’ll return to Alton. Right now, here, what there is, he says, is a feeling of loneliness. “I have bigger and better goals. This has really affected my life in a big way.”