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'Each day is a gift,' says Gambrills heart-transplant patient New AACC grad seeks first job in two decades

THE BALTIMORE SUN

Margaret Lyn Nelson lines up her bottles of pills, nine in all, on the dining room table.

"This is what I take in a day," the 42-year-old divorced mother of two says matter-of-factly.

The drugs have led to high cholesterol, aching joints, high blood pressure, mild kidney failure and cushionoid syndrome -- "what the fat woman in the circus has," a condition that added 75 pounds on what had been her slim, 125-pound frame.

Nelson studies an old photograph of her former self clad in a pale pink, formal dress and says, "I look at that and I think, 'I want her back.' But then I think, 'I'm alive.' When you're looking at death, you're willing to change anything."

In October 1989, the Gambrills resident traded nearly a lifetime of debilitating illness, stemming from a rare heart disease, for an organ donor's strong heart.

She emerged from five hours of transplant surgery with rave reviews from doctors and a newfound determination to pursue her dreams. Five weeks after surgery, she took on the college education she'd missed as a young pregnant high school graduate 27 years earlier.

Despite the mild kidney failure and other side effects from post-surgery, anti-rejection drugs, Nelson has completed a two-year paralegal associate program at Anne Arundel Community College. The school supplied tutors, tape recorders and laptop computers for note-taking and extensions when hospital visits forced her to miss time.

Nelson will graduate Thursday, then begin searching for her first job in two decades, one to help support the $10,000 annual cost of keeping herself alive with medication.

Living only on alimony and disability payments, Nelson has relied on her family and church to help pay bills. To supply herself with the costly anti-rejection drugs, she's hooked into a network of transplant patients who gather medication no longer needed by patients who have died.

Nelson became sick as a teen-ager. Doctors told her parents their 15-year-old daughter had some form of heart disease and advised them that stress would probably prevent her from marrying or having children.

In spite of that, Nelson married soon after graduating from Glen Burnie High School and had her oldest daughter, Kim, now married and expecting a baby, with no complications that summer.

It wasn't until she'd suffered two strokes at 19 and sought advice from The Johns Hopkins Hospital that doctors diagnosed her with cardiomyopathy, a thickening and atrophying of the heart muscle. At 21, she underwent heart surgery, where doctors scooped thickened muscle from the left ventricle.

When the muscle grew back, doctors placed Nelson on medication and told the young wife and mother of a 4-year-old to limit her activity. But to help support her family, she took a job as a unit clerk at North Arundel Hospital.

After three years at the night job, her strength gave out. She has been living on disability ever since, along the way adopting her second daughter, Gretchen, now 15, and getting a pacemaker.

Eight years ago, Nelson's husband left, and the couple divorced. Nelson decided it was time to get a college education. But her plan was derailed soon after she enrolled in classes at University College at the University of Maryland. One day in class, Nelson felt an excruciating cramp in her leg.

Columbia cardiologist Jerome Hantman discovered Nelson had no pulse in her foot and sent her back to Hopkins, where doctors operated to remove a blood clot.

"After that, I never got my energy back," Nelson says.

Her stomach began to swell. A liver biopsy in December 1987 revealed no problems, but Nelson knew her stomach hurt, she couldn't eat and she couldn't stand for long.

By January, cardiologists found their patient in heart failure, with blood backed up in her liver. In March 1988, with a heart quiver, Nelson was interviewed at Hopkins, then placed on a national list of more than 900 patients awaiting heart transplants.

She waited 19 months, praying a lot and relying on help from members of her Mormon church. She carried a beeper in case an organ donor was found, and was afraid to stray from its 50-mile range. She became resigned to the false alarms; the beeper would go off during class or in church, often a wrong number or misdirected call from a drug dealer.

When surgeons finally called to say a heart had been donated, Nelson arrived at the hospital only to have her hopes --ed. The organ was a throw-away; it tested HIV-positive. Several months later, doctors brought her in again, only to reject a second heart, this time for hepatitis.

By 1989, Nelson had enrolled at Anne Arundel Community College. She was on the phone with a professor, discussing a speech on organ donations she planned for that day's class, when her call-waiting service beeped.

On the other line was heart transplant surgeon Bruce Reitz, a pioneer in heart-lung transplants. He'd found a heart from a donor with matching blood type and body frame, good for just four hours. Nelson would have to get to the hospital immediately, he told her.

"But I have to give a speech," Nelson recalls saying.

"No, you have to come now," Reitz said. "We have to have you in surgery within an hour."

Nelson left her youngest daughter at home and arrived at the hospital with her boyfriend. She kissed her oldest daughter before being wheeled to surgery.

"I just knew this one was the right one," says Nelson, whose body still shows no signs of rejecting the heart.

To this day, she knows nothing about the donor or that person's cause of death. She prefers it that way.

"I felt the heart beat and felt someone had to die to give this to me," she says.

"It really upset me. You go through grief for the organ you lost and for the person who dies. But then grief turns into gratitude. Each day is a gift."

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