She was born with a hole in her heart, which was bad enough. She also had pulmonary hypertension, a rare condition in which arteries that carry blood to the lungs become narrow. It is progressive, nearly always fatal and almost never present without some underlying trigger such as emphysema.
Before receiving a heart-and-lung transplant in 2005, Shary spent more than three years hooked up to a pump 24/7 that supplied a lifesaving drug. She couldn’t walk more than 20 feet without stopping to rest. Her father Morris “Moe” Alwardt recalls the day he looked at his ailing daughter while she awaited a transplant, losing weight and not knowing what the future held.
“I told her, ‘I feel so badly that you have to go through all this,’” Morris Alwardt said. “She just very calmly looked over at me and said ‘Well, Dad, the doctors say one or two people in a million get this. It just happened to be me.’ She just kept looking to the future. She never showed any anger about the situation at all. She never felt sorry for herself.”
Shary died on Nov. 16. She was 23. She may have been dealt an awful hand, but she also received a great gift. The heart and lungs she received gave her seven years, and she did not waste it.
The organs came from Patrick, a boy in Ohio who died in a traffic accident. The transplant allowed her to graduate from Lutheran High School, where she was a manager for the girls basketball team her senior year. She enrolled at Lincoln Land Community College. The Make-A-Wish Foundation of Illinois paid for a Caribbean cruise with her family. She also traveled to Las Vegas and Europe. She fell in love with Paris and toasted her 21st birthday at Fast Eddie’s in Alton. She raced her father to complete identical Sudoku puzzles, winning almost every time. She cheered on the Cubs and never threw away the ticket stub for a 1999 N’Sync concert in St. Louis.
“She was one of the shiest people I’ve ever known,” her father says. “She was just very quiet – she never made an issue of her situation at all. Shary was the kind of person who could be a part of a group conversation without saying hardly anything. You just noticed her sitting to the side with a grin on her face.”
Shyness did not stop Shary from speaking to the state Senate in 2008 about the importance of organ donation at the behest of former Sen. Gary Dahl, R-Granville, who is acquainted with her father. The speech was short, just two minutes, but Shary, who was still in high school, wrote out what she planned to say and practiced. She sounded out of breath while the normally buzzing chamber was silent.
“I’m eternally grateful to Patrick and his family for my chance to live a full life,” Shary said. “It is truly a pleasure for me to be standing here today. Thank you so much.”
Applause was sustained.
“It took a lot of nerve,” her father says. “She really was an advocate for organ donation, since it had obviously saved her life.”
During a speech class at Lincoln Land, Shary spoke of the need for organ donors and brought along paperwork so classmates could become organ donors on the spot.
“What are you going to say to a girl who’s had a heart and lung transplant?” says her mother Susan DeFrates.
All along, Shary knew that fewer than half the people who receive heart-lung transplants are alive five years after surgery. Performed about 100 times a year in the United States, the last-resort procedure is rare, in part due to a shortage of donors. The mortality rate is high in part because lungs are in constant contact with potentially infectious material carried by air.
With Shary, signs of organ rejection began about two years ago, right about the time that her father lost his job at Honeywell Hobbs, a Springfield manufacturing plant that closed, with jobs reportedly being shifted to Mexico. Morris Alwardt had worked there for 27 years and thought he would be able to find a new job quickly, but that didn’t happen.
“The perspective I have on it now is, it was the best thing that could have happened,” Morris Alwardt says. “I got to spend those two years day in and day out with Shary. She really was my best friend.”
By last summer, doctors in St. Louis concluded that Shary would die without another heart-lung transplant. Then they said they said that a re-transplant would be difficult and that Shary was not an appropriate candidate. Her father recalls crying with his daughter in a hospital waiting room for about five minutes. Then they kept trying.
When Shary asked her mother what they would do if another doctor reached the same conclusion as the physicians in St. Louis, DeFrates told her that they would get a second opinion.
“And she said ‘A third, and a fourth, and a fifth – I want to be alive,’” DeFrates recalls. “She just wanted to be normal.”
In mid-November, Shary, who had suffered a stomach virus, underwent surgery for a clogged stent at St. Johns Hospital, just three days before she was due at the Cleveland Clinic in Ohio to check prospects for a re-transplant. She never woke up.
“It’s torture that she died,” her mother says. “She just kept wanting to do everything she could.”