Shortly after she returned from her heart transplant surgery, Ali Barton took to her computer, eager to set down the details while they were fresh in her mind.
Details of her travels to Florida, undergoing heart transplant surgery at the age of 34, and deciding to keep a child when her doctor told her that it would be a great risk.
These are some of the stories in Barton’s book, “Against Doctor’s Orders.” When asked what one chapter she would recommend among the entire book, she paused, saying there were many — such as the chapter on her waiting for the transplant. She said the chapter that details the transplant itself was one that would likely resonate with most readers.
“A lot of people who have found this beneficial,” she said on Friday. “People are not alone and their stories are important.”
Barton was diagnosed with endomiocardial fibrosis in 2010, and went into heart failure while pregnant with her first son, Ethan. As one who lived a healthy life — working as a fitness trainer and yoga instructor — she said the experience taught her that sometimes, despite all you do, you can have no control over a situation.
Barton said her doctors at Brigham and Women’s Hospital felt that ending the pregnancy would be best. Her family supported the doctors’ suggestion, but in the end, but Barton decided she wanted to keep the child. She traveled to a hospital in Tampa in July 2014 for a transplant, due to the lengthy waiting list in New England. Though born at only 31 weeks, she said Ethan, now 3 years old, is happy and healthy.
“He’s a really funny kid, super sweet,” she said.
Though the transplant was a success, Barton said she will be on medications for years, and had to be hospitalized last December when her body tried to reject of the organ.
“It’s not an easy road,” she said. “We’ve had a few problems.”
When it came to writing the book, Barton said the process was a therapeutic one, particularly when writing about the more traumatic experiences. She worked with Karen Gowen of Wido Publishing, and described her as supportive and great to work with. Gowen, via e-mail, said that she loved Barton’s authenticity, how she told her story as it was, without trying to be anyone she wasn’t. The editing process involved some back and forth, said Gowen, as she read the book and made suggestions for changes.
“Although Ali’s book did not a great deal of content fixing,” wrote Gowen. “She’s a natural story-teller.”
With the book complete, Barton is hoping to do some speaking events. Her goal is to increase the awareness around organ donation.
“I was very vulnerable to share,” said Barton. “But it went over really well.”
Barton’s book is available online and at the Blue Bunny bookstore in Dedham. For more information, visit aliweinbergbarton.com.