New Book is From the Heart

Fri., Dec 11

About two years ago, Joseph Panza's family was in crisis. Panza's wife, Jean, suffered from congestive heart failure and needed a heart transplant. In November 2007, she finally received the heart she needed. Panza, an associate professor of recreation and leisure studies, kept a blog, or online journal, of the daily ups and downs of Jean's illness and treatment during the intense period leading up to and immediately following the transplant. He recently published the blog as a book. Heartfelt: A Journey Through Transplantation is an inside look into the Panzas' journey, and Panza's hope is that the book will help others who face a crisis like theirs. At Southern, Panza teaches journaling as part of his students' coursework: "It's a good psychological tool, especially if you're going through life-altering circumstances. As I kept this Web site it occurred to me this was my journal," he says.

 "My wife had been diagnosed with congestive heart failure several years ago, and there was talk then of a heart transplant, but it seemed far off in the future," Panza says. But Jean's health worsened.  She got a pacemaker, then a pacemaker-defibrillator with paddles built into it. "She just spiraled downhill," Panza says. One day in September 2007, Jean, who was a church secretary, had to be taken by ambulance to the hospital from her job. Her doctors told her it was time for a heart transplant.  

Jean spent nine or 10 weeks in the hospital, waiting for a heart. Twice the Panzas had false alarms when they thought a heart was available and it fell through. Meanwhile, Jean was growing weaker. "We have been together since we were 19," Panza says, "and I had to prepare myself intellectually for the possibility of losing my wife."

So many people were calling every day to ask, "How's Jean?" that Panza couldn't keep up with the messages. He wanted to be able to communicate with friends and family about her condition, so he asked a friend to help him set up a Web site. He called it "How's Jean?" 

The night before Jean finally got her new heart, she was resigned to dying, Panza says. She had lost 40 pounds and had failed physically. They suddenly got word that a heart was available, and it became clear this wasn't another false alarm. During heart transplant surgery, Panza says, "they crack you open and take out your heart. The only thing keeping you alive is a machine." During the nervewracking wait for the surgeons to finish Jean's operation, Panza sat in the intensive care waiting room and posted bulletins on the Web site. At last, he received a call with good news: "The heart is in, and it's beating."

Jean was allowed no visitors at first, as she was very weak. She was on 24 meds a day when she first went home from the hospital. But she steadily improved, and by January 2008, was feeling better and ready to see people. She and Panza decided they could shut down the Web site, as they felt they didn't need it to communicate anymore. But "people howled!" Panza says. "They told us, 'You can't shut it down!' Many people told us we should make the site into a book."

The Panzas' story really has two parts to it: Jean's journey through transplantion, but also the connection they have forged with the family of Drew, the young man whose donated heart saved Jean's life. 

Panza explains that when an organ is donated and transplanted, both sides -- the donor and the recipient -- are anonymous to each other through the transplant agency. "It's up to both parties to decide whether to be contacted or not," he says.

The Panzas wanted to contact the family of Jean's donor. "I asked my wife 'Are you ready for this?' he says, adding, "with transplantation, the emotional and psychological stuff comes after the medical stuff is behind you." 

Eventually, they met Drew's mother and his family. Drew had been born with cerebral palsy and mental retardation and had died at the age of 21. "We bonded with the family," Panza says. The relationship has been powerful for both sides. He says, "I finally had an ending to my book." 

Panza published the book this past summer and is donating the proceeds to Donate Life Connecticut, a statewide coalition composed of volunteers with a shared interest in public education about organ, eye and tissue donation and increasing the number of transplants that save lives. Panza is hoping to partner with the organization in planning a campus event to raise awareness about organ donation.
Raising awareness about organ and tissue donation is key to increasing the number of potential donors. At present, over 1,000 Connecticut residents and over 105,000 U.S. residents are waiting for transplants.

For information about how to become an organ and tissue donor, or to join the Donor Registry, visit www.DonateLifeCT.org. To purchase a copy of Panza's book, visit www.humanactionassociatesllc.com.