Wellsville woman maintains hope for organ donation

“There’s always a blessing in every bad thing that happens, it seems,” said Joni Lingenfelter, speaking via phone from the hospital room of her daughter, Chelsea. The 21-year-old Chelsea had received kidney dialysis earlier in the day at The Cleveland Clinic and was resting.

Joni’s comment serves as more than just positive reassurance. It has become a guiding principle for life since Chelsea was diagnosed with liver cancer in October 1995 when she was only 4 years old. Joni says she fainted after doctors at Tod Children’s Hospital in Youngstown told her the source of the painful lump in Chelsea’s abdomen, and she had to be revived by medical staff.

The blessing then was that the cancer had only progressed to Stage 2 and was still treatable. “They mostly only catch them with children at Stage 4,” Joni said, by which time it’s often too late.

After aggressive chemotherapy treatment, including an experimental trial, showed little progress, surgery became necessary. Several operations to remove the tumorous sections of the liver followed, but the cancer was aggressive as well.

“Cutting it back, cutting it back, and then, there was just no more to cut,” Joni said.

Chelsea’s salvation came in the form of a living relative donor transplant. Joni proved to be a suitable match, so surgeons removed 20 percent of her liver and transferred it to Chelsea. The operation at Rainbow Babies and Children’s Hospital in Cleveland in 1999 was the first living relative donor liver transplant in northeast Ohio.

Chelsea was now cancer-free, and she remains so to this day. However, she still only had one-fifth of a liver, and complications followed her through childhood and adolescence. Scar tissue meant the bile ducts would clog up periodically and had to be drained off. Over time, the process repeats itself as the liver portion grows steadily weaker, eventually dying off completely.

The blessing this time was that the transplanted liver portion kept working for almost 14 years. At the time, doctors told Joni that it would only last for seven.

In response to the liver’s failure, Chelsea’s kidneys have picked up the slack, but they are now becoming overworked. That is why she has been receiving regular dialysis at The Cleveland Clinic while doctors search for a suitable donor liver.

Though Chelsea’s now is now at the top of a tri-state donor list, finding a proper match is no simple task. She needs a liver from a person with O-negative blood and a small stature, to match her petite frame.

In addition to the specific liver type needed, Joni says that myths about organ donation are another hurdle to all kinds of people who are in need and waiting, like Chelsea. One is that people who register to be organ donors on their driver’s license will be allowed to die if they find themselves in need of emergency medical services. Another is that the donor’s family has to pay the medical costs of post-mortem operation. Both assertions are false.

“If people would just read the facts and register,” Joni said. Though she admits her main purpose is that of a plea for her daughter, the experience has turned her into an advocate for organ donation. “You can help so many lives, not just one,” Joni added.

Joni knows that for her daughter to receive a donor liver, it will mean the passing of another human life. She says this is actually the most difficult part of the waiting process. “It’s a difficult subject to talk about,” she said. “You don’t want to offend people, you don’t want somebody to pass on.” However, Joni says she has come to accept it as part of the cycle of life, in which a part of someone else can live on after they’re gone.

For her part, Chelsea says the core group of friends who has been with her since elementary school has been her blessing. “They’ve been there the whole time,” she said. Joni is also certain that the experience of Chelsea’s illness has brought the two of them closer together. “We talk about everything,” she said.

Chelsea also surpassed the physical limitations that kept her from pursuing athletics, cultivating a passion for the fine arts instead, particularly music and drama. When asked which plays were her favorites, she replied, “Anything I could get my hands on in high school, pretty much.”

Though she originally expected to pursue French education following her graduation from Wellsville High School in 2010, Chelsea is looking into audiology and speech pathology. “I discovered that I really like the language aspect more than the actually teaching,” she said.

Go and Do:

* A Celebration of Hope for Chelsea Lingenfelter, featuring a candlelight vigil, will be held at 6 p.m. Saturday, Feb. 16 at Wellsville First Christian Church, 831 Main St.

* A zumbathon will be held to raise money for Chelsea’s medical costs will be held on March 8 from 6 to 8 p.m. at the Calcutta YMCA. Contact Megan Beagle at 330-853-9456 for details.

* A spaghetti dinner will be held at First Christian Church in Chester on March 9. Call 304-387-2887 for more information