Published January 21. 2010 4:00AM Updated January 21. 2010 9:50AM
Old Lyme - The low point came when Jean Panza started planning her own funeral.
In a hospital bed awaiting a new heart that could, but might not, come before her own failing heart gave out, Panza gave her daughter Stacie specific instructions on what to do in the event of her death.
"The plan was, 'Make sure there's plenty of food at the funeral,'" says husband Joseph Panza.
That was 2007.
In January 2009, Jean sits in her Old Lyme home, whole again after years of living with a heart that at its worst ran at 10 percent capacity due to congestive heart failure. Brought on by cardiomyopathy, or disease of the heart muscle, Jean's heart had lost its ability to pump enough blood to her other organs.
Jean's left leg bounces nervously over her right as she talks about the heart transplant that saved her life two years ago. Her new heart beats free of medical devices, and she's down to just six medications a day to ensure her body doesn't reject the donor heart. She started out with 24.
But even today, Jean feels a little guilty about having received a 21-year-old's heart. If it had been up to her, she would have given it to somebody else.
"I just would rather someone younger have a younger heart," the 62-year-old says.
There's also the fact that someone else had to die in order for her to live. When Jean found out that her heart had belonged to a 21-year-old, her first reaction was, "That poor mother."
Not that Jean isn't grateful for her new heart, or for the chance to watch her four grandchildren grow up. She keeps a picture of her heart donor, Drew Doucet, in a frame in the family room, and the two families have grown close since they first connected through the United Network for Organ Sharing (UNOS).
The picture of Drew, who was born with cerebral palsy and was confined to a wheelchair, sits next to two figurines that Drew's mother Paula gave her.
Some people who have undergone heart transplants say they feel differently after the surgery. Some reportedly take on the heart donor's personality traits. Some even have a hard time calling their new heart theirs.
But Jean says she feels like her old self and thinks about the heart transplant only because she prays for Drew's family daily. Joseph jokes that he worried that Jean would become a Red Sox fan post-transplant, like Drew's family. Joseph is a Yankees fan.
Jean is not the talker in the family - that would be Joseph, who as a professor of recreation and leisure studies at Southern Connecticut State University educates others for a living. Where Jean prefers her privacy in certain matters, Joseph, 64, appears comfortable explaining how he felt during those moments when he thought he was going to lose the woman he'd loved since he was 19 years old.
It was Joseph who started a blog called "How's Jean?" to keep family and friends apprised of the situation during Jean's six-week wait for a new heart at Yale-New Haven Hospital.
Last year, Joseph self-published a book based on his blog entries that he called "Heartfelt: A Journey Through Transplantation." The book fills a void in help literature for families like the Panzas who endure the long and difficult period of waiting for a donor heart to become available for a
Unlike Jean, many die while waiting, Joseph says.
All proceeds from sales of Joseph's book will go to Donate Life Connecticut, a nonprofit coalition that educates the public about organ, eye, and tissue donations. The Panzas hope to use the book as a means of raising awareness about organ and tissue donation.
"Miracles can happen, but we must remind ourselves, and each other, that we are interconnected and interdependent on one another in ways we may have never thought about," Joseph writes in the book. "Encourage everyone to donate."
To purchase a copy of Joseph Panza's book "Heartfelt: A Journey Through Transplanation," visit www.humanactionassociatesllc.com.
Copies of the book are $13.95. All proceeds go to Donate Life Connecticut.