Steamboat Pilot & Today

Although Bob Pensack published his story of survival more than 10 years ago, the story did not end when the ink dried.

Pensack continues to survive and thrive, and he continues to learn the daily lesson that life is precious.

When "Raising Lazarus" first hit shelves in late 1994, it received a full-page, positive New York Times book review, a mention in the prestigious literary journal The Kirkus Review and was named one of the best books of 1994 by Library Journal.

But 10 years later, "Raising Lazarus" was out of print. Pensack, however, thought his story still should be told.

"This story of my family, even though it's full of trauma and struggle to stay alive, is a story with a happy ending," Pensack said. "It's a story of hope and that is timeless."

"Raising Lazarus" follows Pensack from his mother's death at an early age from genetic heart disease -- the same disease she passed to Pensack and his brother.

Pensack's first heart attack occurred at age 24, and he's had two more since.

He lives with another man's heart in his chest.

Pensack co-authored the book with Dwight Williams. Pensack told Williams his story every day. Williams put into written words what Pensack had told him and would bring back the pages to be edited and rewritten.

Toward the end of the book, Pensack describes himself in a hospital bed with a new heart. He watches its beats on a monitor and wonders how long it will continue.

"It is a private nightmare, a wilderness of mirrors," he writes. "Friends and family intently conduct their happy lives insulated from the goings-on of a world disconnected from the neat fabric they recognize and nervously insist is reality. ... A grisly anxiety develops with the electronic beeping that corresponds with the pulse of another's heart. ... And what if the beeping stops?"

When Pensack decided to republish the book, he added a chapter. The new ending talks about his daughter, Miriam, who inherited the mutation that can lead to heart disease.

"It was not an easy decision to have children, knowing I could pass this on," Pensack said. At age 11, she experienced irregular heartbeats while playing basketball and has been monitored closely since.

"When Miriam was batmitsvahed, she had to give a speech about growing up and being accepted into adulthood," Pensack said. "She talked extensively about having this heart disease. She said it was a blessing. She said it made her more sensitive about the fragility of life and the vulnerability of other people.

"This disease made me, my wife, my son and my daughter immensely aware that life is short and precious."