Jerry Trueba was tearful when he got his first chance to thank Jim and Lisa Koehne face to face for saving his life — not once, but twice.
The first time came last year when the Koehnes donated a kidney from their dead son, Alex, to him. The second was when they discovered that the kidney was cancerous and needed to be removed.
“You saved my life,” Trueba said after exchanging emotional hugs and tear-choked greetings with the Koehnes Friday on TODAY. “I also have a family, and I’m so grateful for what you did. It was a wonderful thing you did.”
The Koehnes lost Alex on March 30, 2007. They were told the 15-year-old had died of bacterial meningitis, which would not prevent them from fulfilling Alex’s dying wish to help others by donating his pancreas, liver, and both kidneys.
But a 52-year-old man who received the liver died after the transplant, as did a 36-year-old woman who received the pancreas. Alarmed, the Koehnes asked that an autopsy be performed on their son’s body. The postmortem revealed he had a rare form of lymphoma that had attacked his brain, killing him. The same cancer had invaded the donated organs.
‘Like losing him again’
Still attempting to cope with the grief of losing Alex, the Koehnes now had to cope with the guilt that came with the knowledge that the donated organs had killed the people they were meant to save.
“It was like losing him again,” Lisa Koehne said.
But their search for the real cause of their son’s death saved the lives of the two kidney recipients, who had the donated organs removed and underwent chemotherapy to kill the cancer. One recipient remains anonymous. But Trueba came forward after reading about the Koehnes and realizing that they were the parents of the boy whose kidney Trueba had received.
“I saw you guys in the newspaper,” he told the couple. “I said, ‘I gotta meet them and thank them and also tell you not to feel guilty. You did a good deed. Actually, you guys saved my life.”
Trueba, 47, had been waiting nine years for a kidney, undergoing dialysis three times a week for 3 ½ hours per treatment. When he got the kidney, he said, “It was one of the happiest days of my life.” A month later, when doctors told him the kidney had to be removed and he would have to go back on dialysis, he said he was devastated.
He blames the New York Organ Donor Network, which supplied the kidney, and NYU Langone Medical Center, whose doctors performed the transplant, for not making sure the kidney was healthy. He is suing both the hospital and the network. But he feels nothing but gratitude and sympathy for the Koehnes.
“Nobody should feel guilty, because we didn’t know the cause of your son’s death until later on,” Trueba told the Koehnes. “I’m very grateful. You saved my life. Because of you I’m here. I would have been dead.”
“We never wanted it to turn out like that,” Jim Koehne told Trueba. “It was all good intentions on our part. We’re glad you came forward. We were hoping to meet you one day.”
‘A lot OK’
Lisa Koehne, fighting back tears throughout the meeting, said it’s hard not to feel guilty.
“Although everyone tells you it wasn’t your fault, you did the right thing, you still feel it in your heart,” she said. “Goodness gracious, you’ve made these poor people go through what they went through. Hearing it from Jerry it makes it a little bit OK.”
“It makes it a lot OK,” her husband interjected. “You get to meet Jerry, get to see his family, and he’s here.” Then, turning to Trueba, he said softly, “Thank God you’re here.”
Medical experts have said that prospective organ donors are tested for diseases such as HIV, but not routinely for cancer. The United Network for Organ Sharing reports that from 1994 to 2006, more than 230,000 people received donated major organs and just 64 of them developed cancer as a result of the transplant. Lymphoma has been implicated in only a handful of cases, the network says.
When donors are brain-dead and kept alive on ventilators, there is usually time to do more tests. But Alex died of cardiac arrest, leaving doctors with a very small window of opportunity to harvest his organs and transplant them. Experts say that cancer can be a concern when an organ is harvested from an older donor, but it is extremely rare in those as young as Alex.
Trueba feels that the doctors and hospitals involved should have done a better job of determining why Alex died. His parents said that they were told the cause of death was meningitis, but no clinical tests were done to confirm the diagnosis. They said that’s why they ultimately asked for the autopsy that revealed the cancer — and saved two lives.
Alex’s legacy
Trueba’s attorney, Jeff Shapiro, said all organ recipients have a right to expect that doctors and hospitals have made every effort to assure the health of the organs being transplanted.
“What they deserve is for Jerry’s doctors and the hospital to ask the same question the Koehnes asked, which was, ‘Tell us why our son died,’ ” Shapiro said. “And they didn’t get an answer that they believed or trusted. And it’s really because they insisted that they get a correct answer that Jerry’s here today. The doctors at NYU and Jerry’s doctors should have asked the same question.”
The medical center issued a statement that said, “We at NYU Langone Medical Center believe the organ supply is safe, and we are always striving to make it safer.”
The New York donor network said, “Our deepest sympathies go out to the Koehne family and to the organ recipients for the tragic outcome of what is typically the highest form of humanitarian act.”
To memorialize their son and his desire to help others, the Koehnes have established a foundation, Alex’s Promise, which provides two scholarships a year, one in theater and one in football, to local students. It also promotes brain research.
“Basically, Alex wanted to help people,” Lisa Koehne said. “It will encompass brain research, helping families who don’t have the money to fly to specialty hospitals.
“We’re there. If you need a hand, give us a call and we’re there.”