For some, it takes a lot of heart to finish the 12-kilometer Bloomsday course.
No one knows that better than Troy Schlimgen and Erik Gelhar, two men who both have partial mechanical hearts and who plan to walk in Bloomsday to raise awareness of organ donation.
Both Schlimgen and Gelhar are on a waiting list for heart transplants – Schlimgen has been waiting 13 months and Gelhar for 15 months. They’re required to stay within two hours of Providence Sacred Heart Medical Center and not stray beyond the boundaries of cellphone service.
“Bloomsday represents trying to fight through it,” said Gelhar, 27, who like Schlimgen has an implanted left ventricular assist device, or LVAD. The device helps the heart pump.
Schlimgen, 36, is accustomed to fighting. He has congenital nonischemic cardiomyopathy, a condition where the left ventricle of the heart fails to pump enough blood. His brother Brent, 41, died of heart failure from the same condition last year. His father, grandfather and great-grandfather also died of it.
A cardiologist/geneticist from Harvard Medical School is conducting a study to try to identify the gene that’s causing heart failure in Schlimgen’s family. Troy Schlimgen will donate his heart to the study when he gets a transplant.
His most recent battle came two weeks ago, when he suffered a stroke. Sitting at St. Luke’s Rehabilitation Institute recently, Schlimgen recounted the tingling sensation in his hands, the slurred speech and the numbness on the left side of his body the stroke caused.
The LVAD surgery left him with a footlong scar down the middle of his chest and a cord protruding from his abdomen that’s linked to an electronic box about the size of a surge protector. The box controls the rate that blood flows through the golf ball-size pump to the rest of his body.
LVAD devices can cause clotting or bleeding. They’re considered investigational in the United States, but a U.S. Food & Drug Administration committee recommended last week that the they be approved for standard use.
Pam Hester, nurse manager of the thoracic transplant program at Sacred Heart, will supervise the pair’s Bloomsday walk on Sunday.
LVAD patients “have pretty good quality of life,” she said. “Watching them in Bloomsday says it all.”
Schlimgen walked Bloomsday last year with his brother Kevin, 44, who wore their deceased brother’s Bloomsday number.
“I’m doing this to remember my brother and because I used to be very active,” Troy Schlimgen said. “Going through this, you realize what’s important,” he added. “After I get my transplant I want to get married and have a family and see the world.”
He also joked about the Harvard study. “I got my heart accepted to Harvard. Now I want them to accept my brain and I want to go see it all for myself.”
This year will be Gelhar’s first time in the race.
Gelhar has idiopathic dilated nonischemic cardiomyopathy – “Latin for they have no idea what caused it,” he said – and was an engineer for ConocoPhillips when physicians first detected signs of congestive heart failure.
He’s expecting to finish the race in three hours, he said. With his partial mechanical heart, he thinks “sometimes it’s easy to forget you’re on life support.”
Nonetheless, he views his participation in the race as taking a stand against adversity. Using saltier language than is allowed in a family newspaper, Gelhar said, “Bloomsday is a big (expletive deleted) you to the universe.”