Editor's note: An earlier version of this story incorrectly said Ramsey Hachem performed Chris Simon's transplant.
Chris Simon’s bucket list wasn’t anything fancy.
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 will join millions of others around the world in celebrating Easter, a day symbolizing new beginnings. The holiday will have 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.
A double blow
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 is Chris' pulmonologist. “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.
His mother, Sarah, quit her job so she could be with him. Chris tried to keep life as normal as possible, including going to several baseball games when he was able to afford tickets.
His beloved Boston Red Sox even reached the World Series against the Cardinals. He yearned to get to a game when the series shifted to St. Louis.
His father has health insurance through his job, but the family was relying on money raised through donations and a variety of fundraisers put on by folks back in their hometown of Garden Plain to pay for rent, food and other living expenses.
But Chris couldn’t bring himself to spend several hundred dollars for a ticket to the series. Considering it would come from people helping out the family in its time of need, he said, “I couldn’t justify spending that kind of money.”
Instead, he and his younger brother Dustin watched the games on television and soaked up the electricity of the World Series.
His Red Sox won.
“That,” he said, “was really cool.”
The call comes
He became ill in early February and had to be hospitalized. At one point, he was placed on a ventilator. He would not be released for nearly two weeks.
“We spent the night at home,” his mother said. “We got the call the next day.”
They were told to return to the hospital for his transplant. The operation was performed the next day, on Feb. 19.
During a routine medical procedure the day after the transplant, an air bubble went to Chris’ brain.
“We get this call saying he may have had a stroke,” Sarah Simon said. “There’s a major change in his mental status. My husband went in there and he didn’t really know him or know of him.”
Chris was airlifted to another hospital in St. Louis and placed in a hyperbaric chamber for six hours.
“I only remember bits and pieces of it,” Chris said. “That was probably the scariest part of the ordeal. I didn’t understand what was going on.
“I assumed the worst.”
Aided by the hyperbaric chamber, Chris’ body absorbed the air bubble. His recovery resumed and accelerated.
“I remember my wife saying, ‘Everything is going so good. When is the bad going to happen?’ ” Ron Simon said.
The answer came within a matter of hours. Chris was about to be released from the hospital when he began complaining of shortness of breath.
A fresh round of X-rays led to a bronchoscopy, which revealed one of his new lungs was failing. He would need another transplant to survive.
“I was so upset” at the doctors, Sarah Simon said. “I said, ‘You just told me that he could go home!’ ”
Looking back, family members now say, leaving the hospital would likely have cost Chris his life.
The second transplant
The second double-lung transplant, on March 8, was so hard on Chris’ body that he nearly died anyway.
One nurse later told Chris that, after seeing him the day after his second transplant, “I didn’t think you were going to make it.”
His mother wasn’t sure he’d survive, either.
“I went in after all this happened and I told him, ‘I love you so much. If you don‘t want to go through with this, I totally understand,’ ” she said.
It was her way of giving her son permission to let go.
But Chris didn’t want to die.
“I’m gonna fight,” he told himself on those dark days after the second transplant.
To boost Chris’ spirits, a nurse suggested the family bring Cooper, his corgi dog, into his room at the ICU.
“He was so down, he was in such pain,” Sarah said of her son.
They brought Cooper in perhaps three times, she said.
“It really made a big difference, I’m telling you,” Sarah Simon said. “They were calling him the miracle dog.”
Knowing he loved Kansas State, nurses at the hospital made him a K-State blanket and brought it to his room, Sarah Simon said. An X-ray tech who shares Chris’ love of comics brought him comic books to read.
‘She’d be proud of me’
Chris admitted he was surprised by how weak he was after the second transplant.
“I had to relearn to walk,” he said. “I had to relearn pretty much everything. I felt like a little baby, starting fresh.”
Chris said he thought about Emily often during his ordeal.
“I think she’d be proud of me,” he said.
Sarah Simon said her daughter initially decided not to have a transplant, but later changed her mind. By then, however, it was too late.
“I wasn’t even aware that she declined it until about a year ago,” Chris said. “I just couldn’t understand why she wouldn’t want to extend her life.
“After going through it, I completely understand why you wouldn’t want to. It’s not what I thought it was going to be.”
Chris began to stabilize and gain strength. But progress came slowly, leaving him frustrated.
“I had to remind him, ‘You were run over a truck, and then they backed over you again,’ ” Sarah Simon said, referring to the transplants.
Hachem said Chris’ bumpy road to recovery is no surprise.
“These were big operations that he had and it’s hard to recover from any one of those operations – never mind multiple,” Hachem said. “I think he’s coming along OK and slowly heading in the right direction, which is really what we all want.”
Small steps represent major milestones.
About a month after his second operation, Chris went for a walk in the hospital. It was his first walk without being attached to an oxygen canister in more than two years.
“Just getting rid of that feels amazing in itself,” he said. “It’s been a long while.”
He couldn’t go anywhere in recent years without a portable oxygen container tucked in a book bag that he slung over his back.
“Every time I went outside the house, I had to take that backpack with me,” he said. “It just feels so good to walk around without that on my back. It’s literally a weight off my back.”
Chris has to remain in St. Louis for three months of pulmonary rehabilitation before he can return to Garden Plain. But he’ll come home on the occasional weekend for special events – including watching Dustin graduate from Garden Plain High School next month.
Dustin talks of going into medicine.
Seeing his brother and sister battle cystic fibrosis and what doctors did to help them “inspired him,” Chris said.
Saying ‘thank you’
Chris and his family are grateful for the residents of Garden Plain who held special events to raise money for the family’s expenses.
Chris calls the support from folks back home “insane.”
“Friends I haven’t heard from in forever, people I don’t even know constantly asking how I’m doing,” he said. “People sending donations or food (to family) back home. People saying prayers or asking if there’s any way they can help.
“It’s been humbling.”
Saying “thank you” for all that support somehow doesn’t seem like enough, said Ron Simon, his father.
“I don’t know what to do to make them realize how much we do appreciate this,” Ron Simon said. “I don’t think there’s any way you could ever repay them.”
There is one particular item on Chris’ list of things to do that he already has his eyes on.
He’s always wanted to go to a game at Fenway Park, home of his beloved Red Sox. He has an aunt whose brother lives in Boston, he said, and she’s told him, “As soon as you get those lungs, we’re going out there.”
There’s no telling how long this bonus chapter of his life will last, but Chris said he intends to make the most of it.
Along with enjoying those simple pleasures taken from him by cystic fibrosis, there’s something else he’ll have to do from now on.
He’ll need to celebrate two birthdays each year, transplant nurses told him and his family: the day he was born – Oct. 17 – and the day he received his lung transplant – March 8.
“They call that his second birthday,” his father said.
It was the day he received new life.