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Chicago Teen With Pulmonary Fibrosis Gets Rare Heart And Lung Transplant

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Fifteen-year-old Spencer Kolman had to depend on an oxygen tank to get around but after a heart-lung transplant at St. Louis Children's Hospital in Missouri last year, the Chicago teen now looks forward to doing what most kids do.

Four years ago, Spencer collapsed while playing hockey. He was initially suspected to have asthma and pneumonia but doctors eventually concluded that he has pulmonary fibrosis.

What Is Pulmonary Fibrosis?

Pulmonary fibrosis is a lung disease characterized by lung tissues that get damaged and scarred. The thickened and stiff tissue then makes it more difficult for the lungs to work properly. As the condition worsens, the scar tissue makes it harder for oxygen to get into the blood. The low level of oxygen and the stiff scar tissue can cause the patient to experience shortness of breath especially when walking and exercising.

Rhabdomyosarcoma At 16 Months Old

Spencer was just 16-month-old when he was diagnosed with rhabdomyosarcoma, a type of cancer that affects cells that normally develop into skeletal muscles. He had to undergo a year of chemotherapy, multiple surgeries and radiation before he entered remission.

Despite his condition, Spencer was keeping up with his peers until he started to feel shortness of breath that led to his collapse. Doctors eventually told his family that his cancer treatment when he was younger was responsible for his pulmonary fibrosis and that his condition was so severe, he had to undergo a heart-lung transplant.

Only A Few U.S. Hospitals Offer Heart-Lung Transplant

Ken Kolman, Spencer's dad said that there are no hospital in the Chicago area that do pediatric heart-lung transplant. He was given a list of only about five hospitals in the U.S. that offer the kind of surgery that his son needed.

The family encountered worse when they were told that the procedure was too risky for the young Kolman's condition. Finally, however, surgeons at St. Louis Children's placed him on their transplant waiting list.

"I looked at the information and disagreed with the assessment that had been made by the other institutions," said Pirooz Eghtesady, cardiothoracic surgeon-in-chief at St. Louis Children's Hospital. "They thought the surgery was going to be prohibitively risky, extremely difficult, and that was not my assessment."

Hope For Spencer

Spencer was supposed to be an outpatient but due to him deteriorating quickly, his condition was deemed grave. On Nov. 11, he was admitted to the hospital and placed on a ventilator. After a match became available on Nov. 29, Spencer went through a five-hour surgery.

Spencer was released from the hospital but has not yet been given the green light to go back to Chicago since he still needs to be monitored for possible organ rejection and infection. Doctors are optimistic though that the teen's quality of life would improve substantially.

Based on data from past operations, up to 90 percent of patients experienced substantial improvements in their ability to do daily activities such as walking and generally taking care of themselves.

"He can now have a life," said Eghtesady.

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