U lung transplant recipient becomes a patient advocate, makes a planned gift
While skiing in Breckenridge, Colorado in, 1991, Ed Schuck found himself gasping for air, and it wasn’t just the altitude. Schuck, who was then age 51, was diagnosed with Alpha-1 antitrypsin deficiency (Alpha-1) a genetic disease that can cause lung failure and liver disease.
Alpha-1 is caused by decreased or abnormal production of a protein called alpha-1-antitrypsin (A1AT), which is produced by the liver and protects the lungs from inflammation and inhaled irritants.
The debilitating illness was tough for Schuck to accept. “Because the lungs are the most robust systems, we take them for granted,” says Schuck, an active angler and ambitious businessman who didn’t like the idea of slowing down.
A University alumnus and engineer-turned-entrepreneur, Schuck had worked for Medtronic, Inc. and other tech companies, and had cofounded two successful companies of his own. “I’m kind of aggressive in pushing what I want to do,” he says.
But that drive and high energy conflicted with the realities of living with Alpha-1. In addition to drug therapy, Schuck would need a lung transplant.
Life with Alpha-1
For Schuck, life with Alpha-1 became a challenge. He would get winded easily and had to have an extra oxygen supply at night. “It limits what you can do,” he says. “When I was at my worst, I had to calculate everything—every step.”
Besides the challenges, Schuck says, his experience provided new insights.
For example, living with a lung disease carried a stigma and exposed him to the widely held assumption that people with lung conditions brought on their illness through their lifestyle choices, such as cigarette smoking. “I have a genetic disease; I didn’t do this to myself,” he says, adding that he hopes sharing his story will help educate people.
Also, while Schuck waited for a lung transplant, he took a drug called Prolastin to help replace the missing A1AT protein. The drug cost $125,000 per year. He says that exploring his treatment options taught him a lot about how drug companies make money and about the importance of medical research in improving treatment for lung-related illnesses.
In 2003, after living with the disease for more than a decade, Schuck was offered a second chance through a single-lung transplant at the University of Minnesota. “When I had my transplant, I had 12 percent lung function,” he says.
A second chance
Within weeks of Schuck’s transplant, his lung function and quality of life were profoundly improved. “It was a great experience. This is the place in the U.S.—maybe in the world—to get a transplant,” he says.
“In transplantation, it’s really a partnership between the health care professionals and the patient,” says Marshall Hertz, M.D., Schuck’s physician and director of the University’s Center for Lung Science and Health (CLSH). “Ed has done everything we asked him to. He’s just determined to do well.”
True to his ambitious nature, Schuck didn’t rest for long after his transplant. “It’s not what you can’t do—it’s what you can do,” he says. “Climbing a mountain is out. But I ski at lower altitudes.” And he now enjoys more low-key hobbies, such as restoring boats and collecting duck decoys.
Schuck and his wife, Judy, also enjoy traveling and visiting their two grown daughters and four grandchildren in Idaho and Australia. They recently returned from Australia and New Zealand, and they are planning a trip to South Africa.
“You look at each day differently,” he says. “I am here because I got a second chance, and I intend to take advantage of it.”
Becoming a patient advocate
That second chance also inspired the Schucks to help others suffering from lung-related illnesses.
Ed Schuck has served as a dedicated volunteer for the Alpha-1 Foundation and is committed to supporting the University. He and Judy recently made a gift of more than $140,000 from their estate to the University’s CLSH to promote and advance the center’s top-notch research, outcomes, and clinical medicine.
“I did so well after the transplant,” Ed says. “When I looked at [transplant] results, the University had some of the better outcomes in the nation.”
Additionally, Schuck joined the Minnesota Medical Foundation’s Lung Advisory Committee, where he is using his connections and business background to advance lung-related research and care at the University.
“People underestimate their input, their stories, and their voice,” Schuck says. “You’d be surprised what a small group of people can do when they’re focused on a mission.”