After Lung Transplant, Ed Gulewitz Urges Others To Become Donors
ST. LOUIS, MO — Ed Gulewitz was working retail when a nurse happened to come through his checkout line. Noticing his blunt, rounded fingers, she asked if he had Cystic Fibrosis.
“No,” he told her. He wasn’t an expert on the disease at the time, but he knew it was usually diagnosed in childhood — and he was 30 years old. And while he had some indicators — including a thickening of the finger tips usually associated with pulmonary conditions like CF — his doctor had never mentioned the possibility. Yes, he had a chronic cough, but he’d always assumed it was allergies. He was thin and often sick, but his lung capacity had always been fairly good. He dismissed the possibility.
And he grew thinner and sicker. “I could eat five meals a day plus snacks, but I never gained any weight,” he said.
His doctor was stumped. So Gulewitz changed doctors. Finally, when his new doctor couldn’t figure out why he’d been sick for weeks, they decided to run a genetic test. It came back positive for Cystic Fibrosis.
About 34,000 Americans share the rare disease, which attacks the lungs and other organs, causing malabsorption and weakening the immune system. There is no cure.
Soon after Gulewitz was diagnosed, his immune system began to break down. Chronic chest infections became more severe and his cough became worse. He had to stop work and instead stayed home to focus on maintaining his health.
“It takes so much energy out of you,” Gulewitz said. “I was on oxygen by that time, and I had to carry it around with me wherever I went. I was no longer supporting myself or my family, and I was able to do less around the house as time went on. I began to wonder if I was any good to anybody anymore and what my purpose was.”
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“I remember looking in the mirror as I got sicker and sicker, and I thought, ‘I’m going to die,'” he said.”
Gulewitz said he struggled emotionally with readjusting his expectations about his changing quality of life. Should he push himself harder to get the most out of the time he thought he had left? Or accept that he just wasn’t going to be able to do some of the things he loved any longer?
Eventually, one of his lungs collapsed, requiring surgery and causing him to change doctors again. In addition, there were daily nebulizations and other medications, and he had to wear a mechanical vest to help loosen the mucus clogging his lungs.
“I was spending six to seven hours a day just treating the disease,” Gulewitz said. “I was stable, but I wasn’t getting any better.”
That’s when his doctor suggested a lung transplant.
“I was surprised, since I still thought I would get better,” Gulewitz said. “But the doctor said, ‘You’re not going to get better, we’re just keeping you stable for as long as possible.’ So I had to consider that my only chance for survival was a double lung transplant.”
Gulewitz listened to the doctor and talked it over with his wife later that night.
“We were both scared, but it was something I had to do to survive,” he said. “It was either do it or don’t. I decided to go through the process, and if at the last minute I was too scared to go through with it, I could back out then. But I had to get to the starting line.”
After going through an intensive, weeklong physical and psychological evaluation, Gulewitz was accepted into Washington University’s transplant program in July 2013. By October, he was on the waiting list.
But getting on the list was just the first step in the battle. Gulewitz joined about 115,000 other Americans waiting for a lifesaving organ transplant. The average wait time to find a compatible organ is 3 to 5 years, and about 20 people die every day from lack of available organs, according to the American Transplant Foundation.
Gulewitz was lucky. He was at home watching a St. Louis Blues game on a snowy Saturday the following January when he got the call: Get down to the hospital as soon as you can.
“We got there at 10 p.m.,” he said. “The transplant was performed at 5 a.m. the next day. I was under anesthesia for a day and a half. Then they took the breathing tube out and I was out of the hospital in 13 days.”
Five years and a new pair of lungs later, Gulewitz said he feels profoundly lucky. When he signed up for the transplant program, there was no guarantee he’d be accepted. When he was accepted, there was no guarantee he’d find a donor. And once he’d found a donor, there was no guarantee the transplant would be successful.
“Everyone is going to die. Everyone does die. I thought, ‘If this is my way, then this is it.’ But I knew there was a chance I could get lucky,” Gulewitz said. “So I just, basically, left it up to God. I said, ‘If you want to keep me around, then you’ll find a way to keep me around.’ And I turned my life over to the doctors and nurses that were taking care of me.”
He still has CF, but its symptoms are under control, and he’s able to work, help around the house and even play golf again — something he loves but was no longer able to do before the transplant.
“Now,” Gulewitz said, “my role is to accept this gift gratefully and live the strongest life I can. That’s the only way I can pay it back.”
And he is paying it back.
“After my transplant, I had some time available,” Gulewitz said. So he began volunteering with Mid-America Transplant, an organization that helps match organ donors and recipients.
He signed up to give talks to local high school and nursing students about organ donation, helping to dispel common myths that keep people from registering as donors. For example, becoming an organ donor will not interfere with your medical care in any way, he says. Paramedics and emergency room doctors’ number one priority is always to save your life, not take your organs.
“I enjoyed it. I really loved it,” he said of the talks. “In the beginning, I was emotional about it. It’s very powerful, but you still have to be able to get the message out.”
He hopes he can make people comfortable with the idea of being organ donors, which he says all major religions support.
“You don’t have to do anything different,” he said. “But if you want a legacy that continues after you die, you may be lucky enough to save a life even after you’ve passed away.”
According to Donate Life, a nonprofit advocacy group, anyone can be an organ donor, regardless or age, race or medical history. Corneas are by far the most commonly donated tissue, helping thousands of people regain sight every year. Other commonly-needed tissue and organs include hearts, lungs, kidneys, livers, intestines, veins and even skin.
Gulewitz’s own donor was a young man named Brandon from Texas. He doesn’t know Brandon’s last name or how he died, but Brandon’s mother told him in a letter that Brandon was a marathon runner. He thinks about that sometimes when he’s doing something active with his new lungs. And he thinks about Brandon’s decision to become a donor — how that one act by someone he never had the chance to meet gave him his life back.
“We’re all pieces in a puzzle,” Gulewitz said. “We don’t know where we intersect with all the other pieces and how many other lives we affect every single day.”
In addition to talking to students, Gulewitz helped organize a book event last year for local author and organ procurement coordinator Robert Horsey, who currently works for the Indiana Donor Network in Indianapolis.
Guletwitz reached out to the author after reading “Gifted,” a fictional story loosely based on Horsey’s time working with donor families at Mid-America Transplant in St. Louis.
“I’d never organized a book event in my life,” Gulewitz said. “This process challenges you to go and do thing that you’ve never done before.”
That event led to others. A nurse approached Gulewitz at the book event and asked him to speak to a group of transplant nurses at their annual retreat.
Gulewitz said nurses, who don’t often get the chance to see both pre- and post-transplant patients, are among his favorite groups to speak with.
“I never realized the pre- and post-transplant sides don’t really communicate much to each other,” he said. “It was very therapeutic for me to get my message out and explain to them what it’s like on the patient side. Most of the same people who actually helped me were in the room. It was very powerful to tell them what it means to me as a recipient that I depend on people like you. I loved conveying that message. It was one of the coolest things I’ve ever done.”
Watch a video featuring Ed Gulewitz:
Gulewitz also reached out to his college fraternity, Phi Gamma Delta, and made a video encouraging members to become registered donors, part of their “Immortal Phi Gam” mission. (You can watch that video up above.)
Where others might have seen his condition as an obstacle, Gulewitz said he’s come to see it as an opportunity instead.
“There are obstacles to everything, and if you’re not passionate, you’ll just see the obstacles. But, if you’re passionate about something, you see opportunities everywhere.”
To learn more about becoming a donor, visit registerme.org.