December 2016: Spencer with his dad Ken Kolman and his mom Liz Kolman at St. Louis Children’s Hospital after his transplant. (Kolman Family/St. Louis Children's Hospital)
A Chicago teen is looking forward to rejoining the Boy Scouts, trying out for his school’s band and returning to other activities that 15-year-olds typically enjoy after undergoing a heart-lung transplant in November. Spencer Kolman, who underwent the surgery at St. Louis Children’s Hospital on Nov. 29, is thrilled to no longer depend on an oxygen tank to get around, he told CNN.
“After the operation, when I was able to start walking around, it almost felt completely different because it was so much easier,” Kolman told CNN. “I am amazed.”
Four years ago, Kolman collapsed while playing hockey near his family’s home. The family’s pediatrician suspected asthma and prescribed him an inhaler, but his symptoms did not improve and he went for a second opinion, where he was given antibiotics for pneumonia.
“That didn’t really do anything either,” Kolman told CNN. “Eventually, they came to the conclusion that it was pulmonary fibrosis.”
Kolman was diagnosed with rhabdomyosarcoma when he was just 16 months old, and underwent a year of chemotherapy, radiation and multiple surgeries before entering remission. He continued to develop on pace with his peers, until he started experiencing shortness of breath which led to his collapse, CNN reported. Three years after his initial asthma diagnosis, doctors told his family that Kolman’s pulmonary fibrosis was a result of his cancer treatment, and that his condition was so severe that it would require a heart-lung transplant.
“We’re from Chicago, Chicago-area,” Ken Kolman, the teen’s dad, told CNN. “There are no hospitals around us that do pediatric heart-lung transplants, so I was given a list of like five hospitals in the whole United States that do this sort of surgery.”
Initially the Ken and Kolman’s mother, Elizabeth, consulted Boston Children’s Hospital, but they determined that while his heart seemed healthy, the lining of his lungs had become nearly attached to his chest wall due to scarring and said the procedure was too high-risk, CNN reported.
The family, which includes 16-year-old brother Zach and 7-year-old sister Evangeline, headed to St. Louis Children’s Hospital in September, where they were dealt a devastating blow about the condition of Kolman’s heart.
“We were told the unfortunate news that his heart was worse than before and that he would need both a heart and lung transplant,” Ken told CNN. “That was a complete shock to us. We thought this was it – there was no hope for our son.”
Surgeons at St. Louis Children’s disagreed with the medical assessments conducted on Kolman elsewhere and placed him on the transplant waiting list. The initial plan was for Kolman to remain as an outpatient, but he deteriorated quickly and his condition was considered grave.
“In Spencer’s case, honestly, he was at death’s door,” Dr. Pirooz Eghtesady, cardiothoracic surgeon-in-chief at St. Louis Children’s Hospital, told CNN.
Kolman was admitted to the hospital on November 11 and placed on a ventilator shortly thereafter. On Nov. 29, the family received a call from the hospital’s transplant coordinator informing them of a match, and Kolman underwent a five-hour surgery.
“He can now have a life,” Eghtesady told CNN. “The future really depends on how he does and how his body accepts or rejects the graft.”
Kolman was released from the hospital but has not been cleared to return to Chicago. He is still being monitored for signs of infection or potential organ rejection, but is continuing to improve on endurance.
“The other day, he just walked a mile on the treadmill,” Ken told CNN. “I feel the curve coming where he’s going to like pass me up and I’m going to have to huff and puff and try and keep up with him.”