For 23 years, Florence Sheffer had lived in fear of her daughter running out of breath. So when Kathleen Sheffer stopped cold on a walk one day two years ago, Florence girded herself like she had done so many times before.
But this time it was different. This time Kathleen Sheffer was smiling.
“She said, ‘No, it’s OK,’” Florence recalled. “She’s kind of laughing. She said, ‘I caught my breath, Mom. I caught my breath.’”
Getting gassed and recovering, giving full effort and knowing your body can regulate itself and bring your heart rate and breathing back down to normal — these are things that athletes, and probably most people, take for granted. Not Kathleen Sheffer.
Now a three-time gold medalist at the Transplant Games of America who cycles and hikes and does so many things no one ever thought she’d do, Kathleen Sheffer knows every breath she takes is something of a miracle.
When Kathleen Sheffer, a Montgomery grad, was born 25 years ago, her dad Craig was there happily snapping pictures of his first-born child. But doctors knew immediately something was wrong. She wasn’t turning a healthy pinkish color.
“It was transposition of the great arteries. When I heard that, when I studied it, it was a death sentence,” said Craig, who is a nurse and the clinical services manager at St. Joseph Health. “I passed out. I just dropped.”
When she was 7 days old, doctors opened Kathleen’s chest in an attempt to correct the problem. They could not, so they created a shunt from one side of her heart to the other, hoping that would correct the problem.
But even with the shunt, she always struggled to breathe.
“As soon as she could talk, she would say ‘I can’t breathe,’” Florence Sheffer said.
Regular visits with a cardiologist were generally positive. But one day when Kathleen was probably six years old, she was at a swim lesson at La Cantera Raquet and Swim Club in Santa Rosa. The young guy giving her the lesson knew viscerally that something was wrong.
“This kid says, ‘I don’t care what any doctor says, something is up with this kid. It’s like her heart is going to jump out of her chest,’” Florence Sheffer remembered.
The Sheffers took their daughter to a different doctor for a second opinion.
That was in February of 2000. When the doctor came to greet the Sheffers, they knew the news was not good.
“He said, ‘I got a private room because the news I have is really bad,’” Florence Sheffer said.
The news was that as a result of the procedure when she was 7 days old, Kathleen had developed pulmonary hypertension.
“I said, ‘What do we do to fix that?’” Florence Sheffer said. “And he said, ‘Well, there is no fix.’”
“When she was diagnosed, 80 percent of people died within five years,” she said.
In the face of doctors telling the Sheffers to prepare for a life expectancy of perhaps one to three years and to consider palliative care for their 6-year-old, friends and family went to work, researching doctors and therapies that might help. But it was dire.
“My good friend said, ‘Do not go on the internet. Do not,’” Florence Sheffer said.