Jay Ryan had a hunch something was up when his wife, Sarah, asked him to step things up in the shirt department.
It was a special day for the Ryans: the 25th anniversary of Jay's heart transplant. It's an anniversary the family usually marks privately. But this year, the significance of the milestone demanded something more.
So, on a sunny August morning, Sarah brought Jay — looking dapper — to the courtyard of Mayo Clinic Hospital, Saint Marys Campus, where the family typically gathers to mark Jay's transplant anniversary. This year, friends and members of his care team were also there to surprise him. They'd all come to celebrate a life that nearly ended 25 years ago.
It's a journey Jay believes it's good to remember but not dwell on.
"Everyone has a story," Jay says. "Transplant is ours."
The Ryans' transplant story began the summer after their first year of college. The longtime friends, who grew up on the same street in Northfield, Minnesota, had just begun dating.
It was June 1996. Jay had taken a camping trip to the Boundary Waters and came back with what he thought was a cold. Within days, however, he was coughing up blood. His doctor thought the healthy 19-year-old athlete, who played catcher for the St. Cloud State University Huskies, had bronchitis. But despite treatment, the coughing continued.
A trip to the ER would reveal the true cause: Jay's heart had swollen to three times its normal size. An ambulance rushed him to United Hospital in St. Paul, where he was diagnosed with acute heart failure brought on by a virus.
"They never identified the virus that got to my heart," Jay says. "They suspect I picked something up in the Boundary Waters."
Doctors told Jay he was facing one of three outcomes: His condition could quickly worsen, and he'd need a heart transplant. His condition could stabilize, and he'd live with congestive heart failure. Or the condition could reverse itself.
Jay headed to Mayo Clinic for a second opinion. There, cardiologist Brooks Edwards, M.D., confirmed Jay's worst fears: He was going to need a heart transplant. And soon.
Over the next several days, Jay underwent testing to prepare for the lifesaving surgery. Then, he headed back to Northfield to wait for the call that a compatible heart was available.
But before that call came, Jay's condition deteriorated, and he was rushed back to Mayo Clinic.
"When Jay arrived, he was critically ill," Dr. Edwards says. "He was near death. We quickly placed him on mechanical heart support."
That support was provided by two external bi-ventricular heart pumps. While undergoing a procedure to place the devices, Jay had a cardiac arrest. His family and friends, including Sarah, didn't know if he would survive.
"There was a chaplain with us, and we all got in a circle and said the Lord's Prayer," Sarah says. "I went and got sick in the bathroom. I was so upset."
Jay survived, and over the next several weeks would make a significant impact on the people who cared for him. "I was so impressed by how this young man accepted the challenges put before him," Paul Olsen-Holtorf, one of Jay's ICU nurses, says. "His life had changed profoundly."
It would soon change profoundly once again. A little more than two weeks later, Olsen-Holtorf received a call from cardiac surgeon Richard Daly, M.D.
"Dr. Daly asked me to let Jay and his family know we had accepted a donor heart for him," Olsen-Holtorf says. "Making that call is one of my favorite memories."
Jay's surgery took place on Aug. 2, 1996. The transplant was transformative.
"When I woke up, I could breathe again," Jay says. "I felt so good. When you're in heart failure, it's like you're trying to breathe through a cocktail straw."
With a new heart, Jay began his new life. He spent two weeks on a cardiac floor, then two weeks on a rehab unit receiving physical and occupational therapy to help him recover the use of his left hand, which had been affected by a stroke he had during his cardiac arrest.
Before leaving Mayo Clinic, Jay received some fatherly advice from Dr. Edwards.
"He gave me a stern talking to," Jay remembers. "He told me how important it was to take my medication and come to my appointments. And to avoid partying. That conversation showed me how much the people at Mayo care about their patients."
Jay spent just one semester recovering at home, then returned to St. Cloud State. His daily emails to Sarah would begin with stats on his recovery.
"I came to see him as often as I could," Sarah says.
Soon the emails and visits weren't enough. Sarah transferred from Concordia College in Moorhead, Minnesota, to be with Jay in St. Cloud.
So she was there with him in January 1999, when Jay developed posttransplant lymphoproliferative disorder, a type of cancer common in people taking immunosuppressant medications. Jay was referred to Thomas Habermann, M.D., for treatment.
"I still recall meeting Jay and Sarah," Dr. Habermann says. "They were so young. And there were so many uncertainties about his future."
Dr. Habermann, an expert on posttransplant lymphoproliferative disorder, decreased the dose of immunosuppressants Jay was taking. "It's an approach that can work in up to 25 percent of patients," Dr. Habermann says.
It worked in Jay for several years. But in August 2002, he relapsed.
By then, Jay and Sarah had married. They'd started their careers and were hoping to start a family. Jay's relapse hit Sarah hard. Dr. Habermann provided much-needed reassurance.
"I'd feel so sick going into Jay's appointments, so worried," Sarah says. "Dr. Habermann would always answer all of my questions. He took care of both of us."
This time, Jay received rituximab, a new treatment that Dr. Habermann was researching in other lymphomas. Again, the treatment was a success. And this time, there was no relapse. Further international research demonstrated that this approach could be effective for posttransplant lymphoproliferative disorder.
In the nearly two decades since that relapse, Jay's life has settled into a new normal. He's had yearly visits with Dr. Edwards to check on his heart, and quarterly bloodwork to screen for a return of cancer.
But in most ways, his life is like that of many people his age. He's engaged in his work and in his family — including sons Jack and Luke. "They are the focal point of our lives," Sarah says. "And without Jay's gift of life, they wouldn't be here."
That's a gift Jay doesn't take for granted. "We almost lost everything," he says. "So now, we celebrate the little things."
And the big things. Things like living 25 years with a strong, beautiful new heart.
"It's amazing that he's here," Sarah says. "At 19, we couldn't believe we'd be here 25 years later."
The people who care for Jay feel the same way.
"Twenty-five years is a phenomenal milestone," Dr. Habermann says. "It was so remarkable to see Jay in different places over the years, to watch his family grow and Sarah's career in teaching develop. I reminded her that we could not be here in the positions that we are in without the teachers that we had growing up. Being able to be a part of stories like Jay's is why I get up and go to work each day and continue to at age 68."
Dr. Edwards agrees.
"Being part of Jay's care team — and it's a big team — for so many years is honestly one of the great pleasures of my practice," he says. "The rewards of seeing him and his lovely family thrive are the priceless rewards that make all the hard work worth it. I try and show young physicians who might be interested in a career in heart failure but worry about the long training program that the 'Success with Failure' and people like Jay and Sarah provide all the rewards for time invested. That is the gas in our tanks that keeps us doing what we do. There is nothing better."