O’Fallon Illinois superintendent advocates organ donation
Darcy Benway never had to worry about her health.
In college, High School Superintendent O’Fallon had been an NCAA Division I swimmer at the University of Kansas, and she continued to be an avid runner into her 50s. She had never smoked or taken drugs and drank only moderately.
“I was active. I was healthy,” Benway said. “I had never taken drugs in my entire life.”
Then he was diagnosed with a very rare and “quickly fatal” heart disease. Medications helped, but only for a few weeks. After a month, she had complete and total heart failure and was told she needed a heart transplant.
It was a year ago.
Benway has since recovered enough to be able to work full-time since the start of this school year. Physically, she said she was getting closer to what her health was like before she got sick.
“I didn’t know what to expect. I didn’t know if my life was over,” she said. “I’ll never be 100% that person, but I’m really getting closer. I feel good.”
Along with the personal growth and change Benway said she experienced after nearly dying, she also came away with something else: a new appreciation and advocacy for organ donation.
Tribute to organ donors
April is National Gift of Life Month, to raise awareness of the need for organ donation and to celebrate the generosity of those who donate.
Dr. Joel Schilling, Medical Director of the Cardiac Program at the University of Washington and the Barnes-Jewish Transplant Center, was one of Benway’s physicians throughout his heart transplant journey. He said 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 take place within three weeks of enrollment, he said. Wait times generally got much shorter a few years ago.
While some patients are blessed with short wait times, there is always a huge need for donations. Someone is added to the national organ transplant waiting list every nine minutes, and 6,000 people die each year while waiting for an organ, Schilling said.
Prior to her own transplant, Benway said she had always believed in organ donation – she was even tested for bone marrow donation to see if she might be a match – but would not have called herself an advocate.
“When I was 16 and got my first driver’s license, I was asked if I wanted to be an organ donor, and I said yes,” she said. “I always tried to be willing and ready to step in if asked to do so.”
Forty years ago, when Benway checked that box, she never thought she would ever be the beneficiary 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 shortness of breath and heaviness in her chest. There were tests and EKGs, but in late 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. As her husband returned home and continued to improve, his own health declined. She was admitted to hospital in February.
“What’s weird is that I was so healthy that every system in my body was strong,” Benway said. “My blood tests came back OK. Everything came back OK. I was athletic, so on a stress test I could still perform well, while my heart was dying fast.
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 typically die within three months of the onset of the first symptoms.
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 bad it was, and I kept thinking ‘hey, I’m healthy, I’m going to beat this.’ It just never sank into what I was really dealing with.
Schilling said many people who develop heart disease aren’t necessarily doing anything particularly unhealthy before they’re diagnosed. Benway, in particular, was a prime example of a fit, healthy person with no medical history who nevertheless got very sick, very quickly, he said.
“They didn’t do anything wrong,” he said. “There’s nothing they’ve done to promote it. It was in the genes, so to speak. … Heart failure is not necessarily discriminatory.
Benway said she was grateful for her second chance at life. She also changed – she said she thought she had become a better person and cherished life more without taking anything for granted.
But there’s still something she and her husband struggle to reconcile: For a gift of heart, a second chance at life means someone else has to die.
To honor his donor, Benway gave a name to their common heart: 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 this person who gave me a second chance. I’m not just Darcy Benway anymore, I’m Darcy Benway and Tank.
How to become an organ donor
One of the easiest ways to indicate you want to become an organ donor is on your driver’s license, but Schilling said that’s just the start.
“The reality is that in situations where something could happen, sometimes that driver’s license is lost or not available,” he said. “It’s better to go beyond the driving license, but it’s a good start.”
Those who want to donate should be sure to let their family know of their wishes and be sure to register. Instructions for registering as an organ donor can be found on the Barnes-Jewish website.
Registering as an organ donor will not change your standard of care in the event of an accident, Schilling said. And even those who think they’re too old or sick may have other organs or tissues that are quite viable for transplant.
“The reality is that anyone who registers to be an organ donor is a true hero,” Benway said. “It doesn’t mean that they will actually be called upon to donate one day, but to say ‘I’m ready to step in and save a life if called upon’ – that’s heroic. C is someone who is part of the team who works miracles.