"With HCM, it isn't easy finding the balance between what you can do, and what might set you back," says Pam Fleischaker. "You have to keep on going and use the energy you have, but you've always got to be careful not to overdo it."
With this philosophy, Pam has succeeded in balancing a demanding career and raising a family, and her son Joey, who also carries the HCM gene, has blazed a trail in the world of sports.
Pam, 65, has worked as a newspaper editor and columnist, press secretary for Geraldine Ferraro, and as adviser on two national presidential campaigns. For more than two decades, she has played a major role in women's politics.
At 34, Joey has been a sportscaster, and a producer for both the NBC Olympics and the National Hockey League. As an extreme skier, he has also conquered some of the toughest slopes in Europe, South American, Central Europe and Australia.
The Fleischakers have achieved these things with their own combination of optimism and perseverence—and with the help of caring doctors who specialize in HCM.
Pam suffered with atrial fibrillation for nearly twenty years, and when her symptoms worsened in 2008, she came to Dr. Donna Mancini at NewYork-Presbyterian to explore the option of a heart transplant. "I did my research," she said, "and found out that this hospital had more transplant experience than any other in the country."
After receiving a new heart, Pam found she had to work very hard on her rehabilitation. "I wish I'd had more encouragement to exercise in my 30s and 40s," she says, noting that it was the key to bouncing back. Today Pam can walk a mile in under 30 minutes, practice yoga, and travel to Santa Fe and Mexico. "My son," she adds," has been my inspiration."
Dr. Mat Maurer, the medical director and co-chair of The HCM Center at NewYork-Presbyterian is now monitoring Joey's progress and helping him to maintain his high fitness level.
As a teenager, Joey played basketball and baseball, though most HCM patients refrain from competitive sports. He also added mountain biking and rock climbing to his repertoire, surprising his first team of cardiologists.
In 1992, Joey received an implantable defibrillator as a preventative measure. Yet so far, he reports, it hasn't gone off, and he hasn't shown any signs of atrial fibrillation.
"I'm fortunate to have found the right kind of workout–and the right doctors–so I can maintain the kind of lifestyle that's important to me," Joey says.
Joey now runs, goes to the gym or rides his bike for a minimum of two hours every day. "With Dr. Maurer, I've discovered the level of exercise that will keep my symptoms at bay," he says, "If I don't work out, I have trouble climbing stairs. If I do, my energy level is much better."
Warming up slowly is important, too. At night, Joey's heart rate can drop as low as 30, so he has to wait for his body to rev up before he starts his routine: "I don't just jump on the treadmill. I work up to it, and then I ease up to a my standard pace."
In addition, Joey follows a heart-healthy diet, eats natural foods, with plenty of vegetables and protein.
These are good healthy habits for anyone—but they are even more critical for those with HCM.
"Anything that makes my body work better makes me feel better," Joey says. "I may have some challenges ahead. But for now, no one would guess that I have HCM."