DOCTOR AFTER DOCTOR TOLD HER SHE’D DIE.
BUT SHE AND HER FAMILY WOULDN’T QUIT UNTIL THEY
FOUND THE ONE SPECIALIST WHO BEGGED TO DIFFER.
HER STORY COULD SOMEDAY SAVE YOU.
WHAT WOULD YOU DO IF your doctor gave you a terrifying diagnosis? You wouldn’t be human if you didn’t panic. But it’s what you do NEXT – whether you accept doom or overturn every stone in the medical kingdom in search of a cure-that can make the difference between life and death. It can also make a huge difference in the QUALITY of your life. And while finding the best doctor has always been important, ultraspecialized medicine and cutting-edge (but not universally available) technology have made it all the more crucial to uncover all your options.
But where do you turn? Just because a specialist is well known doesn’t mean he’s the best at treating your particular ailment. And going to a big, famous hospital doesn’t always guarantee the best possible care, either. That’s because in recent years, some of the world’s best doctors have moved to smaller, out-of-the-way facilities, lured by more resources and better equipment for their specialties.
TRAPPED INSIDE HER BODY Kate Klugman, 36, of Manhattan Beach, California, uses a cane and leg brace-but she’s very much alive, thank you, despite the fact that three years ago her doctors put her chances of survival at less than one percent.
Back in 1995, Kate thought she was in good shape; in fact, she was preparing to become a certified personal trainer. Her one health complaint was migraine headaches, and on the night of June 28, she went to bed with a severe one. The next morning, she got up at 6:30 in order to get a jump on the day before her daughters, then 18 months and 3 years, woke up. “I got in the shower and I felt waves of dizziness. After I got out, my left side suddenly turned to jelly,” she says. “I sat down on the edge of the tub, then staggered back to bed. I couldn’t move my left arm at all.” She woke up her husband and said, “Call 911.” Before the paramedics came, Kate’s speech was starting to slur; by the time they arrived, minutes later, she couldn’t speak at all.
The ride to the nearest emergency room took only ten minutes, but by then she was paralyzed. The hospital didn’t have the kind of sophisticated equipment she clearly needed; all the doctors could do was try to stabilize her so she could be transferred to nearby Torrance Memorial, a neurologist suspected a brain tumor and ordered an MRI, but Kate went into such severe convulsions during the exam that the technician couldn’t get a reading.
At this point, Kates’s husband, Steven, was calling every doctor the family had ever met. One doctor suggested they look in the brain stem for a possible stroke-and he turned out to be right. “No one had been looking for a stroke because I was so young,” Kate says. But with the diagnosis of a brain stem stroke, the doctors lost hope: They were 99 percent certain she would die.
Kate fought hard. For six weeks, she hung on in intensive care, hooked up to a feeding tube, tracheotomy tube (to help her breath and swallow), and a catheter, unable to speak and paralyzed from the neck down. Her only way of communicating was to blink. “I was trapped inside my body, and I was terrified,” she says. “I never knew if I was going to make it through the night.”
Meanwhile, Steven was fighting his own battle. He put his law practice on hold and started calling doctors again, asking, “What would you do if this was your wife?” He learned that the Daniel Freeman Memorial Hospital in Inglewood had a stellar reputation for working with stroke patients, but no matter how he pleaded and argued, the center’s administrators claimed Kate was too far gone to be admitted.
Meanwhile, Kate had learned to communicate using a letter board and in this way found an advocate in the Torrance ICU. Steven Kolodney, M.D., a lung specialist, saw how strong-willed she was, and when she spelled out “Am I going to die?” he was the first doctor to answer no. He backed Steven in his fight to get Kate into Daniel Freeman. Steven also used his legal background to pressure the facility, which finally admitted her.
The day she was transferred, Kate was wary. “So many doctors had given up on me.” She says. But David Alexander, MD , director of the stroke rehabilitation center (who hadn’t been involved in the initial decision to reject her), was different. “He examined me, then said, ‘Yes, I think we can do this.’” Kate recalls. He introduced her that day to his 15-person team, which included physical and occupational therapists, nurses, and a social worker and dietitian.
Then it was time for hard work. “In the first session Dr. Alexander said, ‘Let’s get rid of the tubes as soon as possible,’ and in a few weeks, I did,” Kate says. When the tubes came out, her speech was painfully slow and distorted, but Dr. Alexander always waited for her to finish. He paid attention to the emotional component of Kate’s recovery, too. Her daughters were afraid to visit her room, so he authorized a special pass that allowed Kate to visit them outdoors on the hospital grounds. He also made her believe in herself. The day Kate found she could lift one leg a few inches, he said, “I think this means you are going to walk.”
In October, after three months at Daniel Freeman, Kate went home. She was still in a wheelchair, but by Christmas she was using a walker and by February she was able to drive-and she continued to improve beyond the expectations of anyone but Dr. Alexander.
That’s not to say she doesn’t have limits. She still can’t use her left arm and hand; she also tires easily. “I’d love to go running on the beach again,” she says wistfully. “And I wish I could put my daughters’ hair in a ponytail. Acceptance doesn’t take away all the frustration.” But she has discovered new passions: She founded a local stroke support group )Dr. Alexander keeps her pamphlets in his office), is a national spokeswoman for the American Heart Association, and helps people through her e-mail address: firstname.lastname@example.org . And she’s still improving-slowly. Says Kate, “I tell people that even when your doctor says there’s no hope, you should never give up.”
Reprinted with permission from October 1998 Redbook