"I'm an optimist but a realist too, so I was nervous,"… (Kenneth K. Lam, Baltimore…)
Doctors in America told Chris Lyles a cancerous tumor on his windpipe was inoperable, but he and his family wouldn't take no for an answer.
They wrote surgeons all over the world, pleading for someone to take his case. Then during an Internet search, Lyles' brother-in-law stumbled upon a doctor in Sweden who recently implanted a synthetic trachea in a man in Eritrea.
They sent an email to Dr. Paolo Macchiarini, who replied with words they had been waiting months to hear: "I can help you."
Macchiarini performed the surgery, making 30-year-old Lyles of Abingdon the second person in the world, and the first American, to have a synthetic trachea implanted. Lyles arrived home from Stockholm on Wednesday.
"I'm glad to be home," he said Friday while sitting in his mother's living room in Baltimore. "I'm alive. That's all I can say."
Lyles, an engineer with the Department of Defense, first began having problems breathing and started suffering from coughing attacks in 2010. Over several months, different doctors diagnosed bronchitis, pneumonia and asthma.
"They knew something was wrong with my throat, but nobody could tell me what it was," he said.
When a pulmonary test showed he was breathing at only 20 percent capacity, doctors ordered a CAT scan, which found the tumor.
An immediate surgery was ordered to help Lyles breathe, and doctors placed a stent in his windpipe, where the tumor had constricted the opening to about the size of a No. 2 pencil. Doctors tested the tumor and determined it was cancerous.
But there was no easy fix.
Lyles' tumor had grown too big — larger than 2 centimeters — for doctors to remove. Large tumors can damage too much of the windpipe if extracted, said David Green, president of Harvard Bioscience, the company that created a bioreactor, a shoe box-size apparatus where Lyles' new trachea was grown. Radiation and chemotherapy can shrink the tumor, but it is likely to grow back.
Across the world, Macchiarini, director of the Advanced Center for Translational Regenerative Medicine at Karolinska Institute in Stockholm, had become a leader in the emerging field of tissue engineering, or creating organs outside of the body.
Since 2008, Macchiarini had performed 10 trachea implants by seeding the patients' stem cells to windpipes from cadavers using the bioreactor created by Harvard Bioscience. In 2010, he performed the same surgery on the man from Eritrea using a synthetic windpipe.
Macchiarini figured using synthetic windpipes could save more lives because it's hard to find a donor match for a trachea. And people who undergo organ donations have to take expensive medications to prevent their bodies from rejecting the new organs. Transplants of synthetic organs would eliminate both issues.
Macchiarini said in a phone interview Friday that he thought Lyles was a perfect candidate for the transplant because there were few other options for the man who wanted to be around to watch his 4-year-old daughter, Erin, grow up.
"The conventional methods wouldn't work for him," Macchiarini said. "If they tried it, everything would crash."
Lyles said he was both elated and nervous when word came that a doctor could help him.
His mother, Dorne, was in the grocery store when she got the news and cried.
"Finally, someone that could help my child," she said.
It was a new and experimental procedure, so there were risks. Lyles said his doctors in Maryland didn't know enough about the procedure to fully recommend it. Lyles would have to travel to Sweden for the operation because it is not yet approved in the United States. And it would be expensive because insurance doesn't cover experimental treatments.
Lyles decided there wasn't any other choice if he wanted to live.
"I'm an optimist but a realist, too, so I was nervous," he said. "But I am also a fighter, and I wasn't going to sit by idle and let this take me."
In preliminary surgery, doctors removed stem cells from bone marrow in Lyles' lower back. They placed the stem cells in the bioreactor with a Y-shaped scaffold made from plastic polymers commonly used in soda bottles. The bioreactor spun the scaffolding, like a rotisserie chicken in a roaster, as the stem cells fell and fused onto the scaffolding. Over a couple of days, the individual cells grew into real tissue, Green said.
In November, Lyles underwent a 12-hour surgery in Sweden, where his mother, sister and brother-in-law traveled to be with him.
He was groggy when he woke up in intensive care and saw the family sitting there. A sense of relief washed over them all.
Lyles is eager to get back to work once he has recovered. He is staying with his mom as he recuperates.
He isn't sure how much the surgery will cost him in the end. His family has contributed more than $200,000, and he has also received donations through a nonprofit organization. He and his family expect the total cost could be hundreds of thousands of dollars.
Lyles said he has been tired since the surgery but mostly feels good. He feels sensation in his chest but doesn't know if it is the new windpipe or the after-effects from having his sternum cut in half for the procedure. He went driving for the first time and said he was a little sore in the chest area.
Lyles sometimes wonders why this all happened to him. He thinks that God wants him to be an advocate for the transplant surgery so others like him can get help.
"God puts us here for a purpose, and maybe this is my purpose," he said.
Macchiarini is trying to get Food and Drug Administration approval to perform the transplants on three patients in America, including an infant in Illinois and a former ballet dancer in Vermont.
Lyles said that is a good idea.
"They need to push this through," he said. "There is no reason I had to go all the way to Sweden to get this surgery. They could save so many people's lives."