One family’s loss means life for anotherFARGO — “Don’t get too attached,” the doctor advised Paul Leintz’s parents when they adopted the ailing newborn.
By: Megan Card, Forum Communications, The Jamestown Sun
FARGO — “Don’t get too attached,” the doctor advised Paul Leintz’s parents when they adopted the ailing newborn.
Leota and Hank Leintz of Fargo knew their son had cystic fibrosis, and his condition became considerable worse as he grew older.
Suffering from cystic fibrosis since birth, Leintz’ condition became considerably worse as he grew older. The chronic disease clogs the lungs and digestive system with thick, sticky mucus, causing shortness of breath, frequent infections and persistent coughs.
After a weekend in Minneapolis when watching a pay-per-view wrestling match left him frequently winded, Leintz was put on a double-lung transplant list in 1999 when he was 28 years old.
From that day on, his life became a waiting game.
“They kept saying 18 months, 18 months, just wait 18 months,” said Leintz , now 41. “It was frustrating to say the least, but I kept working, trying to live my life the best I could.”
His symptoms became so severe that yawning became too difficult. He had a lung capacity of 17 percent.
“It felt like I was claustrophobic in my own body,” Leintz said.
After creeping up the lung transplant list for three years, Leintz received “the call” on June 18, 2002. One way or another, his fight would finally be over.
As he was being wheeled into the operating room at the University of Minnesota Medical Center, the Fargo resident said a calmness came over him.
“I was ready for the surgery, the recovery, but I also felt at peace with my life,” said Leintz, a production assistant for Valley News Live. “I wanted to live, of course, but I knew either way, my life was going to change.”
As Leintz went into surgery hoping for a second chance at life, 45 miles away, Audre Johnson of New Prague, Minn., was steeped in sorrow at the loss of her son, 19-year-old Jesse Johnson.
The loss of a son
Johnson described her son, the youngest of her three children, as the kind of guy who would give you the shirt off his back.
But Jesse Johnson’s “caring soul” masked the depression that eventually led him to commit suicide, leaving his 18-month-old son without a father.
Through the grief of losing her son so abruptly, Johnson said the one light the family saw in his death was the option of organ donation.
“When a nurse first approached us about organ donation, it was the last thing on my mind,” Johnson said. “But once I thought about it, knowing that in his final hour Jesse could essentially donate a lifetime, it was something he would have wanted.”
Jesse Johnson’s heart, liver, kidney, corneas and lungs were transplanted into five other people, changing the course of their lives.
Hearing her son’s lungs
Two years after their son’s death, Audre Johnson and her husband, Bob, reached out to all five recipients of their son’s organs.
The kidney recipient had died six months after the transplant, and the Johnsons didn’t hear back from those who received their son’s corneas and heart.
They eventually did get in contact with the recipient of the liver, who they met in person and exchange emails with frequently, but Leintz was the first to respond.
When the Johnsons met Leintz for the first time in Minneapolis in 2004, Audre, a nurse, took out a stethoscope at one point and asked Leintz if she could listen to her son’s lungs.
“It was a favorite moment, to see how happy she was to hear Jesse’s lungs breathing,” Leintz said.
Johnson said she doesn’t remember what compelled her to bring the stethoscope, but that day was the start of a friendship between the two families.
“Bob and I have pride and joy knowing Paul is a steward of the life our son never had the opportunity to live,” she said.
“We knew that while we may have been crying tears of sadness, other families were crying tears of joy because their loved one was offered a second chance,” she said.
A decade of loss, life
Leintz still remembers hazily waking up in his hospital bed to the sound of his family’s voices after the transplant. A decade later, they gathered around him again, this time to celebrate the 10th anniversary of his double lung transplant.
Joining Leintz for the celebratory barbecue June 19 were Bob and Audre Johnson, along with Jesse Johnson’s 11-year-old son, Jackson Nesmoe.
Audre said while she will never “get over” the loss of Jesse, and the party was unavoidably a subtle reminder of his death, meeting two recipients of her son’s organs is one of the most positive experiences of her life.
“There will always be a hole in my heart for Jesse, but you have to keep living,” she said. “I don’t think closure is a real thing, but I have wonderful grandkids that need their grandma.”
A healing relationship
For Leintz and the Johnsons, the past 10 years have been a road of recovery.
After his successful transplant, Leintz spent three months recuperating in Minneapolis, and continued rehabilitation with a massive regimen of daily medication.
Leintz is involved with the Cystic Fibrosis Foundation, where he mentors other patients on the transplant list and participates in local awareness activities.
Leintz and Audre Johnson have also become speakers for LifeSource, an organization dedicated to organ and tissue donation. At driver’s education classes, company seminars and city council meetings, they urge others to be donors and possibly save a life.
For Johnson, speaking on behalf of LifeSource has helped her heal. Every time she talks about her son, it gets a little easier to live without him, she said.
Talking about it is a major point for Leintz and Johnson. Speaking to others about their experiences and the powerful bond they now share has helped Leintz enjoy his second chance.
“I’ve had those moments of survivor’s guilt, knowing someone had to die for me to be here,” he said. “But I have also come to realize that I now have more motivation to go on.”
Their personal connection is uncommon, since only 10 percent of donor families and recipients ever meet, said Rebecca Ousley, LifeSource’s senior public relations coordinator.
But it’s a beautiful relationship, Johnson said.
“If I could get Jesse back, I’d do it in a heartbeat,” she said. “But life is for the living, and Paul is living today because of my son.”
Megan Card is a reporter
at The Forum of Fargo-
Moorhead, which is owned by Forum Communications Co.