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| The Proactive Patient
Knowledge gives you power to affect your health |
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By Janice Kleinschmidt
 Photography by Mark Davidson Emmanuel Poe used the Internet to conduct his own research on heart valves so he could make an informed decision on his options. |
When 31-year-old Emmanuel Poe was told he had a defective heart valve and would require open-heart surgery, he didn’t take it lying down. He went home and began conducting his own research.
The Desert Hot Springs resident says educating himself on his condition gave him a sense of security. “It’s like your car,” he says. “If you are driving across the desert and it breaks down and you don’t know how to fix it, you are at the mercy of a mechanic.”
Poe had always been the type of person who rarely went to the doctor. After two weeks of chest pains, he decided he just was in bad shape and began jogging, which only increased the pain. On New Year’s Eve 2005, he mentioned the pain to his grandfather, a triple-bypass patient, who suggested Poe visit a cardiologist.
That’s when he learned he was among the 5 percent of American men born with a bicuspid aortic valve (two valve leaflets instead of the normal three), which can go undetected for years until a murmur develops. Poe was told that if he didn’t have surgery within three months, he could expect to suffer heart failure within two years.
The diagnosing doctor suggested a mechanical valve, but that would require him to take the anticoagulant Coumadin for the rest of his life. Another doctor suggested a surgical procedure that would not require blood-thinning medication but would probably have to be repeated in about 20 years (if Poe was lucky).
Before making such an important decision, Poe began reading articles on the Internet. He discovered a Web site that had been developed by someone who had undergone heart valve replacement and that had become a forum for other heart patients.
“I found some people were raving about the On-X valve, which had been out since 1996,” Poe recalls. “The FDA was still doing studies.”
Although the pure-carbon valve (versus the carbon-coated standard valve) would initially require him to take Coumadin, patients in South Africa and Germany were getting by on aspirin alone; and Poe hoped the FDA would approve a similar maintenance therapy in the United States within five years. Among his options, he liked the one he’d found on his own.
“Then I had to find a doctor willing to put it in,” Poe says. “I had heard from other people that Eisenhower [Medical Center in Rancho Mirage] was a really good hospital. I looked online and found they had a heart center.”
Poe was particularly impressed with the online biography of one of the heart center’s surgeons, Dr. Joseph Wilson. “He had been a heart transplant surgeon, and they were teaching MAZE [advanced heart therapy], so I figured they must be pretty modern to be implementing these new technologies.”
It was then time to meet with Wilson.
“His personal demeanor was just first-class,” Poe says. “He answered every question and was not in a hurry.”
After Wilson offered him two options, Poe began asking questions and read news articles online about heart valves. So when he returned to Wilson, he told him he wanted to use the On-X valve.
Poe says Wilson had not used the On-X valve, but agreed to check it out. “He called me back in a couple days and said he had read about it and said, ‘If that’s what you want to do, we’ll do that for you.’
Using a model of a heart, Dr. Joseph Wilson explains to patient Emmanuel Poe how aortic valves work.
“As a patient, you have to take control of your own treatment,” Poe says. “You won’t find all the information you need online, because it’s not all available. But I found actual medical journals that are where the doctors go to get their information. … When you sit down with a doctor, if you really know what you are talking about and ask the right questions, it forces the doctor to think and give you educated answers.”
Poe says his wife also benefited from independent research when she developed a face rash. “Every doctor had a different opinion,” he recalls. “She went on the Internet and on the University of California-Los Angeles’ medical site and found a picture of an identical rash. She went to another doctor and said, ‘I want this medication for this particular problem.’”
Having exercised control over his medical decisions, Poe says he feels safer about his health. “To me, knowledge gives me a bit of peace of mind.
“I would recommend to anybody that they do their own research before going to the doctor— and after going to the doctor to make sure the doctor is right.”
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