Editor’s note: This story was originally published by the Belleville News-Democrat, a news partner of St. Louis Public Radio.
Darcy Benway never had to worry about her health.
In college, the O’Fallon High School superintendent had been an NCAA Division-I swimmer at the University of Kansas, and she continued to be an avid runner in her 50s. She’d never smoked or done drugs, and she drank only moderately.
“I was active. I was healthy,” Benway said. “I had never been on any sort of medication throughout my entire life.”
Then she was diagnosed with a very rare and “rapidly fatal” heart disease. Medication helped, but only for a few weeks. After a month, she went into complete and total heart failure and was told she needed a heart transplant.
That was a year ago.
Benway has since recovered enough to have been able to work full-time since the start of this school year. Physically, she said she’s getting close to what her health was like before she got sick.
“I had no idea what to expect. I didn’t know if my life was over,” she said. “I’ll never be quite 100% that person, but I’m getting really close. I feel great.”
In addition to the personal growth and change Benway said she experienced after nearly dying, she came away with something else too: a new appreciation and advocacy for organ donation.
Celebrating organ donors
April is National Donate Life Month, to raise awareness of the need for organ donation and to celebrate the generosity of those who have donated.
Dr. Joel Schilling, medical director of the Washington University and Barnes-Jewish Transplant Center’s heart program, was one of Benway’s doctors throughout her heart transplant journey. He said that Barnes-Jewish had some of the shortest wait times for transplants in the Midwest, with an average wait time of 40 days.
The majority of transplants happen within three weeks of listing, he said. Wait times generally became much shorter a few years ago.
While some patients are fortunate enough to have short wait times, there’s still a massive need for donations. Someone is added to the national organ transplant waiting list every nine minutes, and 6,000 people die each year waiting for an organ, Schilling said.
Before her own transplant, Benway said she always believed in organ donation — she was even tested for bone marrow donation to see if she might be a match — but wouldn’t have called herself an advocate.
“When I was 16 years old and I got my first driver’s license, I was asked if I wanted to be an organ donor, and I said yes,” she said. “I’ve always tried to be willing and ready to step up if called upon to do so.”
Forty years ago when Benway checked that box, she never considered that she’d someday be a recipient instead.
A very rare and rapidly fatal disease
In late fall 2020, Benway was running a virtual 5k with her husband to raise money for COVID relief when she noticed a shortness of breath and heaviness in her chest. There were tests and EKGs, but by the end of December, her doctor told her she was perfectly fine.
Benway and her husband contracted COVID in January 2021; her husband ended up being hospitalized for a week. While her husband came home and continued to get better, her own health was declining. She was admitted to the hospital in February.
“The odd thing is because I had been so healthy, all of the systems in my body were strong,” Benway said. “My blood work was coming back OK. Everything was coming back OK. I was athletic, so on a stress test, I could still perform OK, while my heart was rapidly dying.”
Eventually, she was transferred to Barnes-Jewish Hospital, where she was diagnosed with giant cell myocarditis. According to the National Organization for Rare Disorders, patients usually die within three months of symptoms first occurring.
There have only been about 300 documented cases since 1905.
“To be honest, I was in complete denial,” Benway said. “I think the doctors were trying to tell me how serious this was, and I kept thinking ‘hey I’m healthy, I’m going to beat this.’ It just never sunk in what I was really facing.”
Schilling said a lot of people who develop heart disease aren’t necessarily doing anything particularly unhealthy before they’re diagnosed. Benway, in particular, was an excellent example of a fit, healthy person with no medical history who nevertheless got very sick, very quickly, he said.
“There’s nothing they did wrong,” he said. “There’s nothing they did to promote it. It was in the genes, so to speak. … Heart failure doesn’t necessarily discriminate.”
Benway said she’s grateful for her second chance at life. She’s also changed — she said she thinks she’s become a better person and one who cherishes life more without taking anything for granted.
But there’s still something she and her husband have a hard time reconciling: for a heart donation, a second chance at life means someone else has to die.
To honor her donor, Benway gave their shared heart a name: Tank.
“I don’t know who my donor is. I don’t know my donor’s family,” she said. “But it was very important to honor that person who gave me a second chance. I’m no longer just Darcy Benway, I’m Darcy Benway and Tank.”
How to become an organ donor
One of the easiest ways to indicate you’d like to become an organ donor is on your driver’s license, but Schilling said that’s only a start.
“The reality is that in situations where something might happen, sometimes that driver’s license is lost or isn’t available,” he said. “It’s best to go beyond the drivers license, but that’s a good start.”
Those who want to donate should make sure to inform their family of their wishes and make sure to register. Instructions to register as an organ donor can be found on the Barnes-Jewish website.
Registering as an organ donor won’t change your level of care should you get in an accident, Schilling said. And even those who think they’re too old or sick may have other organs or tissues that are completely viable for a transplant.
“The reality is, anybody who registers to be an organ donor is a true hero,” Benway said. “It doesn’t mean they’re actually going to be called upon to donate someday, but the act of saying ‘I’m ready to step up and save a life if called to do so’ — that’s heroic. That’s someone who’s on the team of providing miracles.”
Megan Valley is a reporter with the Belleville News-Democrat, a news partner of St. Louis Public Radio.
