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Friends, Family Rally Around Operation Mikhael's New Heart

By Doug Williams | Jan. 12, 2015, 1:36 a.m. (ET)

Mikhael Keyser
Mikhael Keyser, a 2004 U.S. Paralympic swimmer, gives a "thumbs up" during a recent medical appointment. Keyser is waiting for a heart transplant. 

Mikhael Keyser
Mikhael Keyser in the stands at the Athens 2004 Paralympic Games, where he competed for Team USA in swimming.
Mikhael Keyser with wife Amanda
Keyser with wife Amanda, who may have to take time off to care for her husband.

Mikhael Keyser now spends many of his days sitting in the sun and savoring the view behind his home outside Beaumont, Texas.

“I just kind of sit here in the back yard and watch my orange tree grow,” he says, laughing. “It’s pretty good. The oranges have finally turned orange.”

The leisure time with his two dogs isn’t exactly his idea of a good time, however. If it were up to him, he’d still be working full time, coaching swimmers at all hours and swimming a mile or more three times a week.

But the one-time Paralympic swimmer, just 31, is exhausted. Just getting through the day can be difficult when your heart is failing.

Keyser is waiting for a heart transplant. The one he was born with no longer works the way it should. Technically, the diagnosis is left-sided non-ischemic cardiomyopathy, which means the left side of his heart suffers from fluid buildup and can’t do what it’s supposed to do.

“The oxygenated blood that’s supposed to be mixing from my heart and my lungs isn’t able to get pumped out to the rest of my body,” he said. “That’s how weak the left side of my heart is.”

Now Keyser, a lifelong athlete who had endless energy, sometimes feels out of breath when he’s just sitting. He’s lost weight. His energy is tapped out.

The one plus is that his body, so strong from swimming, is working better than it should.

“My body is functioning just fine,” he said. “When you’re a swimmer, you’re in a stage of anaerobic (exercise), without oxygen constantly, so there were 15 years there that I was pushing my body so hard that my body’s able to use the oxygen it gets very efficiently.”

Still, he can’t function this way forever. He’s classified as a stage 2 transplant candidate, just behind the stage 1 patients who, he says, “need a heart yesterday.” He may have to wait six weeks, six months or two years. He has to concentrate on keeping himself as healthy as possible. Mainly, he has to be patient.

“They call me a ticking time bomb,” he said.

Long Swimming Career

Up until about a year and a half ago, Keyser was his non-stop self.

Annie Goering, a former University of Illinois swimmer who worked with him about for four months when she got a summer internship in Texas, recalls how he used to jump into the pool to demonstrate technique or swim with her. Mikhael’s wife, Amanda, said she’s always known him as a super energetic person who’d often go against his own swimmers when they’d have a “Race Coach Mike Day.”

“Nothing would really stop him,” she said. “He would go and go and go and go.”

Yet she said when Mikhael decided to swim from one side of his uncle’s pool to the other this summer, he was exhausted. For now, at least, swimming — so much a part of Mikhael’s life — is on hold.

It was a sport Mikhael excelled at, even without a portion of his left leg, amputated when he was 5 in response to a type of bone cancer called Ewing’s Sarcoma.

He swam and played baseball in high school, then swam in college for the University of Wisconsin-River Falls, a Division III school. He also competed for the United States in the 2004 Paralympic Games in Athens. His best event was the 50-meter freestyle, in which he once held the U.S. record for his classification. At Athens he also swam the 100-meter free and the 100-meter backstroke.

After college, Keyser went to graduate school, began coaching — something he’d first done at age 16 in Florida — and worked full-time in the prosthetics industry.

Everything was going well until the fall of 2013, when he started to tire more easily and picked up an upper-respiratory illness he couldn’t shake. He went to a doctor, who also found an irregular heartbeat and fluid in Keyser’s lungs.

Then, one afternoon, he called Amanda from work to tell her he couldn’t breathe, his heart rate was out of control and he was headed to the emergency room. Since then his situation has gotten worse.

Now doctors believe his heart problem stems from the heavy doses of chemotherapy Keyser received when he was a boy fighting Ewing’s Sarcoma. It’s possible, they say, that his heart hasn’t functioned the way it should for most of his life.

“It’s something they cannot go in and fix,” he said. “It’s steadily getting worse.”

Keyser had to stop working and is now on disability. Though the Keysers have good insurance, the costs are mounting. Gas for the drives back and forth to see specialists in Houston, parking, hotel stays and medications all add up. Keyser has been told the cost of a heart transplant — plus all the medications and treatments that follow — is about $1 million. He’s grateful that insurance will pick up 80 percent or so of that, but is worried about the rest. Amanda, a nurse, may also have to take time off after a transplant to care for him.

“I don’t really have 200 grand sitting around,” he says, laughing.

Family, neighbors and friends have all been very helpful over the past year, and at least one of Keyser’s former swimmers has pledged to raise funds to help, Amanda said.

She and two other family members also have set up a page on the online fundraising site YouCaring.com to help defray costs. They call the mission “Operation Mikhael’s New Heart.”

Making A Difference

When Mikhael and Amanda settled near Beaumont about five years ago, he quickly began coaching. It’s his passion. First he volunteered with a club team. He started a year-round swim team and also did some summer-league coaching.

Since his heart problems surfaced, he’s had to step away from it. He can’t wait to get back to it some day.

“I love coaching,” he said. “Not to toot my own horn, but I had a great way of understanding the athletic mind. I have a great understanding of the adolescent, growing mind and I know how to motivate them. I know when to challenge them, when to back away and give them their space, and I know when to push them and not to push them.”

When Goering knew she would do her internship in the Beaumont area, she sought out a USA Swimming coach and found Keyser. Now she counts her blessings.

“I was expecting somebody who would coach me and keep me in shape for the summer, and I definitely got a friend on top of that,” she said. “That was awesome.”

Even after she went back to school, she continued to seek his input.

“Coaching wise, he’s one of those coaches, he’s really understanding,” she said. “A really great guy, but he knows where and when to challenge you. And as a person, he’s fantastic. He has a sense of humor, but he also knows how to work hard.”

Now, Mikhael and Amanda are in a holding pattern. It’s caused Mikhael to think back and wonder how his parents dealt with his own health problems when he was a little boy — the worries, the costs.

Said Keyser: “I guess that’s how they instilled (the thinking) that you’ve got to do what you’ve got to do for your health and your family, you know?”

Amanda says Mikhael has kept a strong attitude, especially since he was put on the waiting list for a heart.

“His spirits have been high,” she said. “He doesn’t let it get to him. He tries to stay positive and keep busy with his mind, not sit around and think, ‘Is today going to be the day, or is tomorrow?’ ”

Doug Williams covered three Olympic Games for two Southern California newspapers and was the Olympic editor for the San Diego Union-Tribune. He has written for TeamUSA.org since 2011 as a freelance contributor on behalf of Red Line Editorial, Inc.