Editor's note: This is the fourth story in an occasional series
Musician Paul Cardall doesn't get to the piano much anymore, but when he does, the music is straight from his heart, the tired one that needs to be replaced soon.
Two small cameo appearances last weekend during the 27th annual KSL/Primary Children's Medical Center telethon provided him a chance to give back to a hospital he's frequented so often, there's a bronze wall plaque outside the electrocardiogram lab bearing his name.
It was placed there years ago by family members, whose donation to the hospital came after he survived a Fontan surgery to treat severe congenital heart disease.
At 36, he regularly visits his doctors in the cardiology clinic at Primary Children's, despite the fact that almost all of his fellow patients are 18 or younger. And when he gets the phone call he's waited months for, telling him a donor heart is available for transplant, he'll head for the children's hospital on the hill, where doctors who deal with pediatric heart problems continue to treat those who live to be adults.
Dr. Melanie Everitt explains that Cardall's type of heart failure is fairly uncommon, where "one good ventricle pumps blood to the body" rather than having two do the job.
"It's the most severe heart diseases we see," explains Dr. Angela Yetman. "He is alive and he's also done so well for himself." She said Cardall's "personality and temperament" with an optimistic outlook have helped him survive, as have his parents, whose willingness to let him experience life rather than sheltering him for fear of the health consequences.
"They've made plans for the future," Everitt said. "Some kids and parents see this (disease) as a death sentence. … We want to give them hope." Medicine and technology have advanced to the point, that such patients can look forward "not just an extension of life, but a full and active life," she said.
While Cardall has put his music career on hold as he conserves strength, he continues to get iron infusions at home to boost his energy level, and to visit his doctors as they monitor his heart. He's been on the transplant list since September, which "isn't unusual to go six to 12 months," Everitt said.
As he waits, Cardall says he works at being productive within the confines of home. He does get out periodically with his wife and daughter, and for an occasional lunch with friends.
"It's been a year of my life filled with reflection and thinking about where I am and where I'd like to be," once the transplant takes place, he said. Young cardiac patients who share time at Primary Children's are often on his mind, and he writes about their struggles and the lessons he learns from them on his blog, www.paulcardall.com.
As a man who knows what it's like to have more to do than hours in the day, it's been an adjustment to spend days and weeks quietly pondering the past — and anticipating the future.
As for his music, "there are moments where I do go to the piano and just play a little. Often I don't go because Eden (his 3-year-old daughter) wants me to play all the fun songs and doesn't want me to stop."
With time, a willing donor, his doctors' expertise, and God's grace, Cardall believes that nonstop session with Eden at the piano will come — and not a day too soon.