Journalist publishes a book, 20 years after a double-lung transplant
By Norah Machia
in Ohio.
A Syracuse man has written a fictionalized book reflecting on his battle with cystic fibrosis and the double-lung transplant that saved his life 20 years ago.
Dave Murray, 68, a one-time associate editor at the former Syracuse New Times, was inspired to publish the book “A Breath of Fresh Air (A Transplant Tale)” as he reached his lung transplant milestone anniversary in August. In 2004, Murray received his new set of lungs at the Cleveland Clinic in Ohio.
The book chronicles Murray’s challenging life experiences with cystic fibrosis through the fictional character Danny Martini. While many aspects of Murray’s life, such as his family, past employers, friends and relationships, were given fictional references or imagined in another way, the medical information throughout the book represents a true reflection of his health crisis, said Murray.
“I fictionalized it because I’m a private person and in some cases, my memory wasn’t great,” he said. “I took some liberties in telling my story — I wanted the book to be exciting and amusing to engage the reader.”
In his book disclaimer, Murray writes, “Any resemblance to actual persons, living or dead or actual events is purely coincidental.”
But the medical information throughout the book is “98% accurate,” he said.
Although Murray exhibited cystic fibrosis symptoms (such as a chronic cough and weight loss) throughout his childhood and teenage years, he was not officially diagnosed with the condition until age 19.
“My mother had read a newspaper article about cystic fibrosis and told me I should get tested,” he said. “I was floored when I got the diagnosis and at that time, I didn’t have the discipline to take care of myself.”
In the book’s description, Murray wrote about his reaction to the diagnosis through the character of Danny.
“Average CF life expectancy then was just 31 short years. Danny Martini’s world was turned upside down. His optimism was replaced by the seeming certainty of an early death,” Murray wrote. “Danny lived fast and burned through his life as if each night might be the last. A nihilistic lifestyle of drugs, drinking and hard living and the cumulative impact of CF took a heavy toll.”
“He fell in and out of love. He made great and lifelong friends. But by 2004, cystic fibrosis left him emaciated and exhausted, tethered to an oxygen tank,” he added. “His breath and his time grew short. Only a lung transplant could save his life.”
According to the Mayo Clinic, cystic fibrosis is a genetic disease that causes the body to produce thick, sticky mucus. This mucus clogs the lungs and leads to frequent infections. It also blocks the digestive enzymes in the pancreas from reaching the intestines, where they are needed to help digest food. Most cases are diagnosed in childhood, but nearly 10% of CF cases aren’t found until adulthood.
Although cystic fibrosis is progressive and requires daily care, people with the condition are usually able to attend school and work. Today, people diagnosed with the disease typically have a better quality of life than those in previous decades. Many improvements in screening and treatments have enabled CF patients to live longer and better lives.
At the time Murray was born, newborns were not routinely screened for cystic fibrosis as they are today in all 50 states. His symptoms were milder at the beginning, so the doctors who treated his ailments as a youth were skeptical of a CF diagnosis.
During his 20s, Murray experienced bleeding ulcers because of the digestive issues caused by cystic fibrosis. Over time, CF can also damage lung tissue to the point where lung function gradually worsens and eventually becomes life-threatening. That was Murray’s case by the time he reached 48 and became dependent on oxygen to breathe.
“I began coughing up blood, and I was really surprised,” he said. “I was hemorrhaging and I didn’t know that could happen.”
In 2003, he was placed on a waiting list for a lung transplant list after years of medical evaluations.
“They don’t want to give you new lungs too early because they want you to keep your own lungs for as long as possible,” Murray said.
At his last evaluation before being placed on the waiting list, the physicians “realized I had reached the point of no return,” he said.
The first attempt at a lung transplant was unsuccessful. Murray was prepped for surgery and awaiting a new set of lungs when his surgery was abruptly canceled.
“I was just told those donor lungs were unsuitable,” he said.
But the second time was a success.
Throughout the book, Murray tries to make light and add humor to his medical crisis, as only someone who has experienced it firsthand can get away with writing. But his seriousness about the CF also shows through, particularly when he writes about being near death and receiving the lung transplant.
Murray is rigid about taking his medications, about 50 pills daily, including anti-rejection drugs and an assortment of digestive enzymes. He developed diabetes as a result of steroids following surgery, but he manages it well with daily insulin injections and a continuous glucose monitor. Murray said he appreciates a second chance at life and is doing everything possible to prolong it.
Although Murray wrote letters expressing his gratitude to the lung donor’s family (which were delivered through the Cleveland Clinic), the family has not responded to them. But in his book, Murray portrays Danny as writing and eventually meeting the lung donor’s family to show his appreciation for the life-saving donation.
“It made for a better end to the story,” he said. “It was a good emotional tie-up to the book and it was uplifting to imagine what it would be like to meet the family.”
“A Breath of Fresh Air (A Transplant Tale) is available in both paperback and a Kindle version on Amazon or may be purchased through traditional bookstores,” Murray said.