- Associated Press - Saturday, April 26, 2014

WICHITA, Kan. (AP) - 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 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.

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.

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. 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 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.

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.

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.”


Information from: The Wichita (Kan.) Eagle, https://www.kansas.com

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