Organ recipient campaigns for organ donations

Organ recipient campaigns for organ donations
By Beth Irwin
Special to Toledo Free Press


Imagine being 14 years old and told you have acute liver failure, going from diagnosis to critically ill to receiving a donor liver in less than a month.

“It all happened so fast,” said Lexi Schultz, now a 16-year-old sophomore at Central Catholic High School. “I was pretty sick, but I remember thinking about how it was going to turn out, what was going to happen to me.”

Schultz and her family aren't strangers to serious illnesses. At age 5, she was diagnosed with the first of several autoimmune diseases, hypothyroidism. A year later came a diagnosis of Polyarticular Juvenile Rheumatoid Arthritis, also known as JRA, which causes chronic joint pain. Schultz didn't let either diagnosis slow her down. She continued taking dance lessons and playing sports for nearly 10 years.

In April 2005, however, another autoimmune disease attacked Schultz's large intestine, which was surgically removed two months later. Then, as she recovered from a total colectomy and corrective surgery, came the acute liver failure.

Schultz's mother, Andrea, said no one is sure what led to the liver failure, though her liver was already weakened by cirrhosis. The illness became so critical and advanced that “we met with the transplant team at Mott's Children's Hospital [at the University of Michigan] on Oct. 11, 2005, and the transplant took place on Oct. 18. Lexi was only on the transplant list for four days before a donor was found.”

The donor was a 21-year-old Michigan man whose vehicle was struck by a drunk driver. The Schultz family maintains contact with the donor's family. They have spent time together including a recent outing to Cedar Point. Lexi Schultz keeps a photo of the young man whose liver saved her life.

Lexi and Andrea Schultz support all the organizations that have played prominent roles in their medical journey, including the Make-A-Wish Foundation, the Arthritis Foundation and Life Connection of Ohio. Working with Life Connection, Lexi Schultz will tell her transplantation story to middle school students at St. Pius X School on Nov. 9 and spoke to parishioners during masses on Nov. 10 and 11 for the National Donor Sabbath. The Sabbath is a weekend in which religious and health care communities work together to bring organ and tissue donation information to congregations.

Nancy Ellis, community relations manager at Life Connection of Ohio, said studies have indicated that many people consult their clergy when making decisions about organ and tissue donation, and almost every major religion supports it.

“While religious viewpoints may vary slightly,” Ellis said, “the commonality is that organ and tissue donation is a person's final act of charity and love.”

Ellis also said congregations vary how they recognize the National Donor Sabbath, including the use of bulletin inserts, special prayers for those awaiting transplants and for those donated, sermons, donation messages on outdoor display boards, or testimonials from people whose lives have been touched by organ and tissue donation.

“More than 97,000 people are waiting for life-saving transplants. Every 12 minutes, another person is added to the national transplant list,” Ellis said. In 2006, 193 Ohioans died while awaiting transplants.

“The Donor Sabbath is a great opportunity to create awareness about organ donation among parishioners, and maybe open dialogue between family members. It's important to make your organ donation wishes known to your family so they don't have to make the decision in the hospital under emotional circumstances,” Andrea Schultz said.

In spite of her health problems, Lexi Schultz leads an active life and maintains a 3.0-plus grade point average at Central Catholic. This summer, she served as a junior counselor at Camp Busy Bee, a camp for children with arthritis sponsored by the Arthritis Foundation and hosted by Camp Miakonda. She also attended her first “transplant camp” for young organ recipients, and co-produced a five-minute DVD as a camp project.

“The arthritis is really the only thing that frustrates me sometimes,” she said. “If I go to Cedar Point, I can barely make it to the car at the end of the day. But I just take things hour by hour, day by day.”

Last month, Lexi Schultz was one of five recipients of the Connecting Point TRIUMPH Awards for her perseverance through her health challenges, from the transplant to the chronic pain of JRA. She was nominated by Jan Florian, the nurse at Central Catholic. In her essay to the nominating committee, Schultz summed up her experiences this way: “Giving up may be easy, but it's just not worth it.”