“Just waiting, that’s the hardest part,” said Porter Lyons from his bed at Cleveland Clinic in late December. He was waiting for news of a new heart. His was failing because of cardiomyopathy. “You don’t know when it’s going to happen. They can come in any time and say, ‘Hey, we got one for you.’ It may be a week. It could be a month. You just don’t know.”
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Doug Lyons never imagined his own son would go through this waiting game. He went through it himself in 1987, when he received a heart transplant at Cleveland Clinic. Here he was 25 years later, sitting by Porter’s bedside and working with his wife and doctors to make some tough decisions.
“We’ve got to get this kid back on his feet, because he has lots of living left to do,” Doug said.
“Everything just kind of hit”
Like his dad before him, Porter was functioning with an “assist” device, in his case an advanced heart-lung bypass device called the ECMO (Extracorporeal Membrane Oxygenation). His surgeon, Nicholas Smedira, MD, and colleagues used this machine to ease the stress on Porter’s heart while they debated the best course of action.
“Detailed discussion with the family suggested that his heart had been failing for longer than it appeared to be,” Dr. Smedira said. Porter’s case appeared acute at first glance, but the family started to look back in time and see the signs. He had been tired far more often than he should have been. He’d had this “weird little cough” whenever he exerted himself.
“Everything just kind of hit,” said mother Karen Lyons, “but because he’s so strong and so young, you know, his body was compensating for everything that was wrong, and it was just pushed to the absolute break.”
In fact, Porter’s case was severe enough that he was classified as a top-priority “1A” on the heart transplant registry. While Karen and Doug shared the joys and heartbreaks of the other families on their floor of the Miller Family Heart & Vascular Institute, they waited for word.
It would come within a week.