“I always felt like I was in the most capable hands possible. I knew my doctors were experts, and they treated me like a person, not just a patient."
John, who stands 6-foot-7, felt sore after an awkward landing while ziplining on his oldest daughter's birthday in 2021. He assumed he pulled a muscle in his leg. But when he was still limping two weeks later, his wife — a UPMC nurse — urged him to see a doctor.
After undergoing imaging scans, John met with Rabih Chaer, MD, chief of the Division of Vascular Surgery and co-director of the UPMC Heart and Vascular Institute. Dr. Chaer diagnosed John with bilateral popliteal aneurysms, or aneurysms in the arteries behind his knees.
While this condition isn't uncommon, it is for someone as young as John. Considering John's size, Dr. Chaer suggested he undergo genetic testing for Marfan syndrome.
Marfan syndrome is an inherited condition that affects the body's connective tissues. It can affect many organs and systems throughout the body, including the heart. John was referred to Mylynda Massart, MD, for genetic testing.
"There was part of me that didn't want to get it done because once you know those things, you can't unknow them," John says. "But at the same time, my oldest daughter is built just like me. Since Dr. Chaer mentioned Marfan syndrome, the testing wasn't just for me — it was now for my kid."
Genetic testing confirmed the diagnosis of Marfan syndrome. Since this condition can affect the heart, John needed to undergo cardiac testing. The tests revealed an aneurysm in his aortic arch, which would require open heart surgery.
“It was difficult to keep a positive mindset," he says. "But I had such amazing care from the doctors, nurses, the PAs, and the staff. It really helped."
John had been diagnosed with non-Hodgkin lymphoma in 2019. His last treatment was in January 2022, and his open heart surgery was scheduled for March. Ibrahim Sultan, MD, performed the surgery, repairing the aneurysm.
Because Marfan syndrome is an inherited condition, John's oldest daughter also underwent testing. She was confirmed to have the condition as well. John and his daughter both now see Arvind Hoskoppal, MD, at the UPMC Adult Congenital Heart Disease Center.
"We've always been close as a family, so it's not like we're closer because we have this common disease," says John, whose mother has also tested positive for Marfan syndrome. "But it's something that we're tackling as a family."
While John's recovery took time, he is thankful for the incredible support he had from his wife and two daughters. He also received great support from the administration and students at the high school where he teaches English. He returned to teaching for the 2022-2023 school year.
John says he's thankful for the care he's received throughout his journey. He's especially grateful to Dr. Chaer for seeing something unusual and suggesting he get tested.
“I always felt like I was in the most capable hands possible," he says. "I knew my doctors were experts, and they treated me like a person, not just a patient. Every conversation that we had with a doctor wasn't rushed. They took the time to answer every question and reassure me."
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