By Joyce M. Miles
Lockport Union-Sun & Journal
Lockport Union-Sun & Journal — You’re never too young, or old, to consider organ donation. Take it from Lea Sobieraski.
The 21-year-old college student from Lockport got a new lease on life seven weeks ago, when she received a liver transplant.
With the onset of a rare genetic disorder called Wilson’s disease, Lea’s liver was destroyed, seemingly in a matter of months. The disease makes the body unable to flush out copper; the metal accumulates in vital organs instead, eventually causing physical symptoms including fatigue, bloating, loss of appetite, easy bruising and achy feet.
When those symptoms started surfacing around Thanksgiving time, Lea brushed them off and kept her commitments to study and the girls’ basketball team at Geneseo State College. When she consistently couldn’t stand to eat more than a few bites of a meal, however, she knew something was seriously wrong.
Pre-Christmas testing at Eastern Niagara Hospital led Lea to the first in a series of shocking discoveries, as the fit, trim, three-sport scholastic athlete was told that her liver looked cirrhotic, that is, “like a 60-year-old alcoholic’s liver.”
Wilson’s disease and the poor condition of her liver were confirmed by biopsy.
Onto the New York State organ transplant waiting list Lea went, immediately, then stayed for a period that some in the medical community view as unacceptably lengthy. Moved by the rapid progression of her illness, Lea’s dad Mike Sobieraski, the principal of Anna Merritt Elementary School, underwent physical and psychological preparation to be a live, partial liver donor if needed.
In fact Lea was “only” on the transplant list for two months, but it’s also a fact that she basically had to be at death’s door in order to get to the top of the list, where she’d have dibs on the next available organ from a donor with her blood type and body size.
Lea got the call from her liver specialist on March 2 indicating a match had become available, and she needed to get to Strong Memorial Hospital, Rochester, immediately to receive it.
The surgery was a success marred only by a couple of “minor” treatable complications, according to Lea.
Fifty days after the transplant, she said she was enjoying feeling “normal” again, easing her way back into a workout routine and looking forward to getting back to Geneseo— and basketball — this fall.
As an organ recipient, Lea also is anxious to tell the world how blessed, and lucky, she feels to be alive. While the large and well-known Sobieraski clan plans a mid-May benefit/celebration in Lea’s honor, she’s been reaching out to the folks at Upstate New York Transplant Service (UNYTS) to see what she can do to help them — and all of the people who, like her, faced the prospect of dying for a lack of available, donated blood, body tissue or vital organs.
Lea Sobieraski knows she owes her life to a stranger.
She also knows that some of the people she met at Strong, fellow patients needing vital organ replacement, won’t have occasion to say the same. The odds are high that at least one of them will die waiting.
That happens partly because there are too few registered organ donors in New York state, Lea and her mom, Wendy Lanfear, told an assembly of seniors at Lockport High School on Thursday.
As they’ve turned or will soon turn 18 years old, now is as good a time as any for the students to hear the facts about organ donation — and employ them in deciding whether to get listed with the New York State Donate Life Registry, Mrs. Lanfear, an LHS consulting teacher, said.
The registry is a means by which people give legal consent to donation of their organs in the event of their death. When decedents are not registered, physicians/surgeons have to get permission from a closest survivor such as a spouse or parent.
Some of the facts, and undoing of myths, about organ donation came by way of Lea’s surgeon, Dr. Randeep Kashyap. A prior speech by Kashyap, recorded and and replayed for the LHS students, is a heartfelt appeal to people of all ages to drop squeamishness and superstition and think rationally about organ donation.
Some of the facts, Kashyap said: Nationwide in 2012, 118,000 people were on organ transplant lists; 28,000 transplants were performed; and on average,19 people died every day while waiting for a transplant.
The American way of lining up potential organ donors, by an “opt in” registration system, isn’t too helpful to the cause of saving lives, according to Kashyap. It requires signers to contemplate their own death and many would rather not. Donor registry rates are much higher in European nations that employ an “opt out” registration system, meaning every decedent is a potential organ donor unless they sign a form stating they do not want to be, he said.
False beliefs about organ donation may hold people back from consenting for themselves or a loved one. Says Kashyap: Contrary to old myth, open-casket funerals are “entirely possible” for organ donors. All of the major religions — Christianity, Judaism, Islam and Buddhism — support organ donation as “a spiritual act that honors the sanctity of life,” he added.
People of all ages, and the chronically ill, are potential organ donors, Kashyap said.
Lea thinks that if people associated organ donation with “life” rather than “death,” the question of whether to register as an organ donor wouldn’t be one to avoid. She’s presenting herself as living proof that organ donation truly is “the gift of life.”
“If people talk about it before they’re in a crisis situation, then hopefully they’re more comfortable and prepared” to give consent for themselves or a loved one, Lea said.
The topic hits doubly close to home for Mrs. Lanfear, who gave consent for her late husband Dan’s organs to be donated in 2006. Dan Lanfear gave new life to eight people who received his heart, lungs, kidneys, liver, pancreas and small intestines. Seven years later, Lea’s story is “a celebration of life,” she said.
“Please become educated on the facts about organ donation and give thoughtful consideration to registering,” Mrs. Lanfear urged the assembled students. “If you think it could never happen to you, think again.”
Sally Moore also addressed the students to relay the story of her daughter Stephanie, a 2002 LHS graduate who died in a motor vehicle accident in 2010. Stephanie was a registered organ donor, and her written consent provided peace of mind to her doctors and her family, Mrs. Moore said.
“Don’t wait. Just do it,” she said.
Lea’s aunts and uncles, and grand uncle Richard Conley, are organizing a two-part benefit for Lea that will be held May 18 at Lock 34 and May 19 at the Cornell Cooperative Extension.
Conley said the fundraisers are the family’s answer to the frequently asked question, “how can I help?” Since word of Lea’s illness got around, they’ve been inundated with offers.
Proceeds from the benefit will be deposited in a fund for Lea’s “future,” Conley said. While everyone’s celebrating Lea’s recovery and the fact that she’s just fine in the moment, her elders worry about obstacles down the road. Lea will have to take anti-rejection medication for the rest of her life, and health insurance costs could be higher for an organ recipient.
On May 18, the sanctioned Rebound From Wilson’s Disease 5k walk/run, and a 1-mile kids walk/run, will be held. Beginning at 10 a.m. at the Locust Street laundromat, the 5k route follows Locust Street, Willow Street, McIntosh and O’Brien drives. Prizes will be awarded to male and female first- and second-place finishers in nine age groups. The entry fee is $20 in advance and $25 on race day. Runners can register online at score-this.com. The entry fee for the kids’ event is $5 in advance and $7 on race day. A post-race celebration, featuring food, drinks and music for all runners and walkers, will be held at Lock 34 Bar & Grill. A basket raffle will be held as well. For more information, call 434-7249.
On May 19, a benefit catered by Donna Eick will be held from 1 to 6 p.m. at the Cooperative Extension. A $20 donation coveres food, soda, beer and wine, and entertainment by deejays Mark McKernan and Dave Stoll. A 50/50 split and a basket raffle will be conducted.
Donations of baskets and gift certificates for raffle are being accepted; donations can be dropped off at Roy B. Kelley Elementary School between 8 am. and 4 p.m. weekdays or pickup can be arranged. For more information, call: Marianne Currie Hall, 807-1672; Sharon Secrist, 579-4034; Dennis Sobieraski, 807-1146; Mark Sobieraski, 772-5148; Dawn Sobieraski, 628-3906; Richard Conley, 433-9298; or David Sobieraski, 433-3573.