He simply wanted to be able to ride a bike again. Or take a swim. Or go camping with friends.
“Stuff I used to do all the time,” Simon said. “And all of a sudden it was taken away.”
Those once simple joys were stolen by cystic fibrosis, the same disease that claimed his younger sister Emily’s life in 2009.
The Simon family on Sunday joined millions of others around the world in celebrating Easter, a day symbolizing new beginnings. The holiday held special significance for Chris, 26, who has another chapter dawning in his life after a double-lung/liver transplant several weeks ago.
“It’s been a long ride,” he said.
Cystic fibrosis is a genetic disease that attacks organs in the body - most commonly the lungs. Two of Ron and Sarah Simon’s three children were born with it.
Emily chose not to have the double-lung transplant she needed to extend her life. She died at the age of 19 in 2009.
After Chris was hospitalized twice in his senior year at Kansas State University, the disease seemed to go dormant for about a year. As medical tests showed his lungs were slowly failing, however, his doctor delivered painful news:
If he wanted to live, he would need a lung transplant.
But that wasn’t all. The cystic fibrosis had attacked his liver as well.
“Liver disease as a result of cystic fibrosis is not unusual,” said Dr. Ramsey Hachem, medical director of the lung transplant program at Barnes-Jewish Hospital in St. Louis, who performed Chris‘ transplant. “In a small number of patients, they can develop end-stage liver disease.”
In order to extend his life, Chris would need a double-lung and liver transplant - an operation performed only a handful of times a year in the United States.
He went on a waiting list in March 2013 and moved to St. Louis. He needed to be within an hour of Barnes-Jewish Hospital in case the call came.