Gary Klausner of Plainview celebrates personal milestone over cystic fibrosis with message of hope

In November 1998, 33-year-old Gary Klausner, breathing though an oxygen machine, sat down in his Manhattan apartment and made a video he prayed would never be watched.

“I wanted to leave my boys a message, in the event that they never got a chance to meet me,” said Klausner, who suffers from cystic fibrosis and whose wife, Robin, had just given birth to twins the week before. He told his wife to put the tape in the vault, and “no one's to ever look at it” unless something happened to him. 

The tape has sat in the vault, and on Dec. 20, Klausner, of Plainview, who was twice told he had limited time to live, celebrated the 25th anniversary of the double lung transplant that saved his life. He received the lungs on Dec. 20, 1998.

“I feel like a million bucks,” he said in a recent interview. “I don't think there's anything that could stop me.”

The milestone is a significant medical feat, as most people with a double lung transplant live a median of about 10 years after surgery, said Dr. Zachary Kon, system surgical director of advanced heart and lung disease and heart and lung transplantation at Northwell Health.

The longest someone has lived with a double lung transplant is about 32 years. Klausner is determined to beat those odds.

“I want to be the G.O.A.T. [greatest of all time],” he said.

At age 10, he was diagnosed with the genetic disease that causes the body to produce thick, sticky mucus that can build up and block the lungs and the pancreas, the organ that secretes digestive enzymes. He was not expected to live past age 16. 

“Historically, it was an unfortunate death sentence for many children who never saw 20 years old," Kon said.

Despite the initial diagnosis, Klausner said he led a “relatively healthy” life, playing college tennis and describing himself as a “basketball junkie.” But he knew he was living on borrowed time.

“Back then, you didn't have adults with cystic fibrosis,” Klausner said. “No one survived.”

Rare infection triggers need for transplant

Then, in July 1998, when his wife was about six months pregnant, Klausner developed a rare bacterial infection called Burkeholderia cepacia, which “sent him on a downward spiral.” 

He was admitted to Long Island Jewish Cohen's Children Hospital in New Hyde Park, where he spent 30 days and was put on oxygen. Klausner was told that in order to live, he would need a double lung transplant.

At the time, many hospitals did not have the understanding of cystic fibrosis or such transplants for patients with the disorder, Kon said. In February 2022, Kon and a team of North Shore surgeons performed the first double lung and heart transplant on Long Island.

Kon said that “just the presence” of such a bacterial infection could easily affect a new lung, and transplant centers “wouldn't even consider” taking Klausner's case, although since 1998, scientific breakthroughs have made such circumstances less risky.

Dr. Scott Palmer of Duke University, a pulmonologist, invited him to North Carolina to be evaluated for a possible transplant. After a series of tests, Duke agreed to accept him, but the wait list at that time for two lungs could have taken up to two years. 

Before going to Duke, he saw doctors at University of North Carolina at Chapel Hill. One of them, Klausner recalled, “looked me in the eye and he said, ‘You don't have two and a half years.’ ”

In order to be wait-listed on a transplant list, patients had to be in North Carolina, so they could go into surgery as soon as an organ became available. Doctors encouraged Klausner to “immediately” move there, just as his wife was due to give birth.

He was faced with “the most difficult decision of his life, whether to stay in North Carolina to have a higher chance of receiving a lifesaving, double lung transplant, or witness the birth of his twin sons, Matthew and Steven, in Manhattan.

He chose to see his children being born. 

“I was in the delivery room with my wife, with my oxygen tank and my Canon camera to take pictures,” Klausner said.

He then returned to North Carolina, only to be told that one of his infant sons needed to undergo heart surgery in New York on Dec. 17.

Three days later, on Dec. 20, 1998, Klausner underwent the successful lung transplant surgery. After 37 days in the hospital, he spent about three weeks in Duke's post-transplant rehab, learning how to breathe again and building up his strength. On his last day, he completed the rehab by walking through a finish line made of toilet paper, created by staff.

“When I crossed the finish line, it was like I finished a marathon,” he said.

Racing with new lungs

The races would not stop there. Six weeks after he returned to Long Island, Klausner ran a 5k. The following month, he ran a five-mile race. 

Today, Klausner strives to live to the fullest. He goes to the gym several times per week and recently took up pickleball. This past summer, he ran a 10k with his son Matthew and rode a 30-mile bike race with his son Steven, both now 25.

Kon said that for Klausner to reach this milestone is “exceptionally rare,” as the lungs are the only internal organ exposed to the elements.

“Now that I'm on the other side of the tunnel and the other side of the light, I want to share this positive message with as many people as I can,” Klausner said. 

In 2012, he released a memoir, “Never Say Never: A Life of Challenges.” He also is an advocate for organ donation, working with the Boomer Esiason Foundation and organ donation nonprofit LiveOn NY, and has spoken at multiple hospitals. 

Esiason, a former NFL Jets quarterback, said Klausner also has helped him “personally,” as his son Gunnar has cystic fibrosis.

“When I met him and got to know him and his family pretty well, and saw him as somebody that was not willing to give into the disease of cystic fibrosis, I knew that there was going to be hope for my son,” Esiason said.

In 2006, Klausner received the foundation's Michael Brennan Courage Award, and helped raise more than $3 million for cystic fibrosis research. In addition, the foundation funded two adult cystic fibrosis centers in the tristate area, inspired by Klausner's story.

Klausner emphasized that his achievement is not individual, as he is grateful for the Duke hospital staff, his family, friends, and the anonymous donor, for the ability to breathe fresh air every day.

“This is an incredible milestone, but I'm not done,” he said. “I've got a lot more to do.”