Every day, Aaron Rose thinks about his father.
Diagnosed early in life with cardiomyopathy, Aaron’s father, Tom, received a heart transplant at the University of Minnesota Medical Center in 1983. The transplant added years to his life—enough time for him to meet his wife and start a family. Aaron was a senior in high school when Tom passed away in 2003.
“I look up to him as someone who was strong because of all that he went through,” Aaron said. “Life is precious and life is short—that is the legacy he left me.”
It’s a legacy that’s grown even more important for Aaron in recent years. In 2014, after documenting political unrest as a photojournalist in Egypt, Aaron found himself confronting his own health issues.
“I couldn’t shake this cough and I was having trouble breathing. I thought it was pneumonia or bronchitis,” Aaron said. I went to a doctor in Cairo, who rushed me to a hospital. They diagnosed me with the same genetic heart condition—dilated heart cardiomyopathy—that my father had.”
The diagnosis surprised Aaron. Informed of his genetic risk early in life, he had done his best to live a heart-healthy lifestyle, which included running in numerous half-marathons.
“I was at a point in my life where I was in great shape; I thought the condition had missed me,” Aaron said.
Prescribed a heart medication during that initial hospital visit, Aaron returned to his work in Cairo. But when his health declined suddenly six months later, Aaron found himself on a flight back home. Once there, he met with University of Minnesota Health Cardiologist Thenappan Thenappan, MD, who operates an outreach clinic for heart patients in Duluth—near Aaron’s home in Superior, Wis.
It was Thenappan who told Aaron that—like his father—he would need a heart transplant. Cardiomyopathy, a chronic condition, causes the heart muscle to become enlarged and rigid. In some cases, the muscle tissue is replaced with scar tissue. Over time, the heart gets weaker—and Aaron’s was close to failing, Thenappan said.
Suddenly, Aaron found himself traveling down the same path his father had taken, decades before.
A few days after his appointment with Thenappan, Aaron visited University of Minnesota Medical Center for pre-transplant testing. He was 29 years old—the same age as his father, Tom, when he received his heart transplant.
In September 2015, Aaron began a six month long stay at the hospital, where doctors could better monitor and care for his failing heart. Four months later, in January 2016, Aaron’s condition worsened yet again. He began moving in and out of the Intensive Care Unit. Surgeons also implanted a supplemental balloon pump on the femoral artery in his right leg to help his weakening heart move blood throughout his body.
Aaron held onto hope that a donor heart would become available for him, but Thenappan and other members of his care team began considering alternatives to keep Aaron alive.
One option: implantation of a ventricular assist device—a mechanical pump attached directly to the heart. Though the device can provide improved circulation support until a donor heart is found, the surgery would be particularly risky for Aaron, due to the condition of his heart.
With no donor heart in sight, Aaron agreed that the device was his best option. Doctors scheduled the surgery for Feb. 16, 2016.
But fate had other plans: Just two days before the scheduled procedure, doctors found a donor heart for Aaron. The heart was rushed to University of Minnesota Medical Center. On Feb. 14—Valentine’s Day—Aaron received his new heart. Aaron was the 847th person to receive a heart transplant at the University of Minnesota Medical Center; decades earlier, his father was the 19th recipient.
“The timing was jaw-dropping,” said Thenappan. “Patients who need a heart transplant are sick or in poor health, otherwise they wouldn’t need a transplant. But even by that standard Aaron was very sick.”
Aaron was out of the hospital two weeks after his transplant procedure. Almost immediately, he proposed to his girlfriend Amanda, who had cared for him throughout his ordeal.
“We had only met five weeks before I went into the hospital, but she stuck by my side the whole time,” Aaron said, laughing. “Now, she’s my wife!”
For their honeymoon, the pair traveled to Paris, Rome and—of course—Cairo, so that Aaron could show Amanda his home away from home.
“The last few months have been about getting back to normal,” Aaron said.
But for Aaron, “normal” has a different definition.“I’ve always wanted to live my life like an adventure,” he said. “A lot of that is because of my dad. There’s so much you can do with your life. A heart condition doesn’t have to hold you back.”