Dr. Diana Fite, a 53-year-old emergency medicine specialist in Houston, knew her blood pressure readings had been dangerously high for five years. But she convinced herself that those measurements, about 200 over 120, did not reflect her actual blood pressure. Anyway, she was too young to take medication. She would worry about her blood pressure when she got older.
Then, one morning last June, Fite was driving. Suddenly, her car began to swerve.
"I realized I had no strength whatsoever in my right hand that was holding the wheel," Fite said. "And my right foot was dead. I could not get it off the gas pedal."
She grabbed the steering wheel with her left hand and steered the car into a parking lot. Then she used her left foot to pry her right foot off the accelerator.
"I called 911, but nothing would come out of my mouth," she said.
Then she found that if she spoke very slowly, she could get out words. So, she recalled, "I said 'stroke' in this long, horrible voice."
Fite is one of an estimated 700,000 Americans who had a stroke last year, but one of the very few who ended up at a hospital with the equipment and expertise to accurately diagnose and treat it.
Stroke is the third-leading cause of death in the United States, behind heart disease and cancer, killing 150,000 Americans a year, leaving many more permanently disabled and costing the country $62.7 billion in direct and indirect costs, according to the American Stroke Association.
But from diagnosis to treatment to rehabilitation to preventing it altogether, a stroke is a litany of missed opportunities.
Many patients with stroke symptoms are examined by emergency room doctors who are uncomfortable deciding whether the patient is really having a stroke - a blockage or rupture of a blood vessel in the brain that injures or kills brain cells - or is suffering from some other condition. Doctors are therefore reluctant to give the only drug shown to make a real difference, tPA, or tissue plasminogen activator.
Many hospitals say they cannot afford to have neurologists on call to diagnose strokes and cannot afford to have MRI scanners, the most accurate way to diagnose strokes, for the emergency room.
Although tPA was shown in 1996 to save lives and prevent brain damage and although the drug could help half of all stroke patients, only 3 percent to 4 percent receive it.
Most patients, denying or failing to appreciate their symptoms, wait too long to seek help - tPA must be given within three hours. And even when patients call for emergency aid promptly, most hospitals, often uncertain about stroke diagnoses, do not provide the drug.
"I label this a national tragedy or a national embarrassment," said Dr. Mark Alberts, a neurology professor at the Feinberg School of Medicine at Northwestern University.
"I know of no disease that is as common or as serious as stroke and where you basically have one therapy and it's only used in 3 to 4 percent of patients. That's like saying you only treat 3 to 4 percent of patients with bacterial pneumonia with antibiotics."
Most strokes would never happen if people took simple measures like controlling their blood pressure. Few do. Many say they forget to take medication; others, like Fite, decide not to. Some have no idea they need the drugs.
Still, there is much more hope now, said Dr. Ralph Sacco, professor and chairman of neurology at the Miller School of Medicine at the University of Miami. Like most stroke neurologists, Sacco entered the field more than a decade ago, when little could be done for such patients.
Now, Sacco said, there is a device, an MRI scanner, that greatly improves diagnosis, there is a treatment that works and there are others being tested. "Medical systems have to catch up to the research," he said.
A sad fact for doctors treating stroke patients is that tPA, which only recently appeared to be a triumph of medicine, has made not a whit of difference for many patients. They either do not arrive at the hospital in time or are considered otherwise medically unsuitable to receive it.
Few would have predicted that fate for the drug. In 1995, after 40 years of trying to find something to break up blood clots in the brain, the cause of most strokes, researchers announced that tPA worked. A large federal study showed that, without it, about one patient in five escaped serious injury. With it, one in three escaped.
The drug had a serious side effect - it could cause potentially life-threatening bleeding in the brain in about 6 percent of patients. But the clinical trial demonstrated that the drug's benefits outweighed its risks.
When the study's results were announced, Dr. James Grotta of the University of Texas Medical School at Houston expressed the researchers' elation. "Until today, stroke was an untreatable disease," Grotta said.
But the expected sea change did not occur.
One problem was that patients showed up too late. Another is deciding whether a patient is really having a stroke.
Most patients get CT scans, which are useful mostly to rule out hemorrhagic strokes, the less common type that is caused by bleeding in the brain and should not be treated with tPA. Stroke specialists can usually then decide whether the patient is having a stroke caused by a blocked blood vessel and whether it can be treated with tPA.
But most stroke patients are handled by emergency room physicians who often say they are not sure of the diagnosis and therefore hesitate to give tPA.
Dr. Richard Burgess of the National Institute of Neurological Disorders and Stroke explained the situation: There is no particular penalty for not giving tPA. Doctors are unlikely to be sued if the patient dies or is left with brain damage that could have been avoided. But there is a penalty for giving tPA to someone who is not having a stroke. If that patient bleeds into the brain, the drug caused a tragic outcome and the doctor could be sued. Few emergency room doctors want to take that chance.
There is a way to diagnose strokes more accurately - with a diffusion MRI. But most hospitals say they just cannot provide such scans to stroke patients. They would need both an MRI technician and a specialist to interpret the scans around the clock. And they would need an MRI machine near the emergency room. Most hospitals have the huge machines elsewhere, steadily booked far in advance for other patients.
Another approach, stroke specialists say, is to direct all patients with stroke symptoms to designated stroke centers. There, patients would be treated by experienced neurologists and admitted to stroke units for additional care.
But many hospitals decline to be a stroke center. Stroke patients, unlike heart attack patients, are not moneymakers.
Because of the way medical care is reimbursed in the United States, most hospitals either lose money or do little more than break even with stroke care but can often make several thousand dollars opening the arteries of a heart attack patient. And being a stroke center means finding and paying stroke specialists to be available around the clock.
The Joint Commission, which accredits hospitals, recently started certifying stroke centers, requiring that the hospitals be willing to treat stroke patients aggressively.
But only 322 of the 4,280 accredited American hospitals qualify and most patients and doctors have no idea whether a hospital nearby is among them. (The list is available on the commission's Web site, http://www.jointcommission.org/CertificationPrograms/Disease-SpecificCare/DSCOrgs/ under "primary stroke centers.")
As a result, most stroke patients have no access to the recommended care and even fewer get MRIs, a situation that Dr. Steven Warach, chief of the stroke program at the National Institute of Neurological Disorders and Stroke, said he found appalling.
"How can it ever be in the patient's best interest to have an inferior diagnosis?" he asked. "It borders on malpractice that, given a choice between two noninvasive tests, one of which is clearly superior, the worse test is the one that is preferred."
As for Fite, she completely recovered. And she has changed her ways.
Now, Fite takes three blood pressure pills, a drug to prevent blood clots and a cholesterol-lowering drug. She plans to take those drugs every day for the rest of her life.
"I was so stupid," she said. "Boy, when you go through this, you never want to go through it again.
"I have been given that precious second chance," she said. "I was so blessed."