Taking Steps to Fight Heart Disease

Sandra Verbeck, 29, looks forward to completing the 3.2-mile American Heart Walk in October. Striding through the course with a team of family and friends, she may not look like a woman who occasionally has difficulty walking at all.

Born with multiple congenital birth defects, Verbeck finds heart disease the most debilitating and hopes a future heart transplant will resolve the problems that have necessitated more than 25 major surgeries—and ongoing procedures.

In fact, a medical dictionary would come in handy to decode the entries in Verbeck’s date book. Comparing notes at the end of the day recently, her boyfriend mentioned the blood test he took. "He was slightly embarrassed and overwhelmed," said Verbeck, "when I told him my day included a spinal tap and infusion therapy!"

Amazingly, it’s not the procedures—or even surgeries—that try Verbeck’s spirit. "It’s the tiny details," she says, citing getting to doctor visits and fighting with insurance companies, "that make it tough to cope."

While her life is neither easy nor routine, Verbeck’s positive attitude has allowed her to prevail. "The key is balance," she says, adding that she cannot afford to be either too active or too sedentary.

She’s come a long way. At birth, Verbeck had approximately one-half of a normal heart; there was no left ventricle or atrium. Insitus Inversis or "mirror baby syndrome" meant all of her internal organs are reversed in position compared to an unaffected person.

At six months, her seizures and weight loss led doctors to discover a variety of other conditions, including univentricular poli-spleenia (which made her body home to a dozen spleens).

During her teenage years, surgeons "replumbed" her heart with the Fontan procedure. The operation resolved her cyanosis (the blueness caused by mixing "good" and "bad" blood) and allowed her right atrium to pump blood directly to her lungs.

Verbeck received a pacemaker in 1996 to regulate her arrhythmia, and still suffers from high blood pressure. Her edema forces her to take diuretics regularly, so she must never be too far from a restroom.

She has been stricken with spinal meningitis three times, and even a common cold left untreated has more than once forced Verbeck to submit to infusion therapy for weeks at a time.

Because the veins in her lower arms can no longer support the constant needles for drawing blood or delivering medication, Verbeck now has a "pick line" under the skin in her upper arm. This small implant lets her administer her own antibiotics during her infusion therapy.

Don’t think managing her health is full-time job for Verbeck. She’s conducting research for several book ideas. After seeing young friends succumb to cardiovascular and other diseases, Verbeck believes children do not deal with impending death the way adults think they do. She wants to be a voice that reaches out to children who suffer from terminal or debilitating diseases—a voice that understands their unique and personal perspective.

Verbeck’s family and friends will join her at the American Heart Walk. Matching her step for step will be a woman Verbeck describes as her best friend, advocate, and inspiration: her mother, Sharon.

Verbeck’s mother became a single parent just a week before her daughter’s first surgery and has since nurtured her sick child through every procedure and bout of depression. Yet her mom never allowed Verbeck to become lazy or complacent. She always encouraged her daughter to help others.

In October, Sandra and Sharon Verbeck will "walk the walk" in the American Heart Walk in Las Vegas. More than two dozen walks are scheduled between September and November. If the Verbeck family can go the distance to fund life-saving research, you can too.