Infant heart transplant patient grows up, shares story of 2nd transplant

At 21, Bill Coon has a lot of livin' to do.

He comes across as a young, carefree guy in his third year at Columbia College in Chicago ready to embark on a future like so many his age.

But his eyes tell another story. They reflect a deeply fixed wisdom of what it's like to be at death's door more than once. And Coon wants to share that wisdom and experience to help others through his candidly honest new book.

“I feel I've matured many years within a one-year span,” he said. “I realized if I survived, I could be an inspiration to people.”

Born with a congenital heart defect in 1989, Coon was the fourth infant heart transplant in the Midwest and the eighth in the nation. He led a normal childhood and graduated from Lake Zurich High School, but last year his heart and kidneys began to fail and he underwent a second heart transplant and a kidney transplant.

His self-published book, “Swim, A Memoir of Survival,” is a daily journal over 10 weeks describing in vivid detail a journey of fear, frustration, pain, anger, waiting and relief over receiving another chance to live.

“Swim” is a song by the musical group Jackie's Mannequin that inspired Coon. The book, he said, is written as though the reader is in his head, thinking his thoughts.

Each night between 10:30 p.m. and 1 a.m. from June 8, 2009, to Feb. 22, 2010, Coon made the effort to write in a journal. Despite his weakening condition and the medications pumped through his system, Coon said he was “completely mentally aware” when he wrote his journal entries.

“I have an incredible support system and you see what you have to live for,” said Coon, the middle child of Ann and Bill Coon of Barrington.

And he is fascinated with how people find a connection to various parts of the book.

“In no way are my thoughts totally unique to me. It's natural to have those feelings,” he said, adding he has had an extremely positive response to the book from cancer patients and individuals born with congenital birth defects.

Now living in an apartment in Chicago and studying communications and advertising, it was just last year when his normal life took a terrible turn.

Before the second transplant on Oct. 21, 2009, Coon describes how his body was weakening and how he felt after doctors first conducted a surgery to install a defibrillator for his heart.

“I thought my walk through hell was over. I hadn't even put on my shoes yet,” he wrote.

There were emotional highs and lows throughout the journey, and spiritual moments from a young man who always believed in a higher being.

Bruised from the needles and tubes, the then 20-year-old writes in his journal about “the lost days” between June 10 and June 27, 2009, after having the defibrillator surgery. He had a distinct memory of being at home alone, feeling as though his dreams were slipping away and rocking back and forth in his living room. Suddenly he heard a tapping at a large window and saw a blue hummingbird at the window.

“I felt a calm come over me. It was a warming sensation I had never felt. In that moment, everything I had been worried about seemed to realign. I experienced total relaxation. Then, as fast as the hummingbird entered my life, it disappeared. I watched it fly away; back into the heavens,” he wrote.

Coon then slowly went upstairs to bed and stared at the ceiling.

“It was the first time I remember talking to God since my surgery,” he wrote. “I thanked him for a second chance. I thanked him for my visitor. Never in my life had I seen a hummingbird.”

The defibrillator, however, was not working, and neither was his medical treatment at the hospital, so the Coon family moved to another hospital and another set of doctors who diagnosed and administered the heart and kidney transplant.

The days waiting for a heart donor were very dark as his health continued to deteriorate from August through October, 2009.

There's one memory in particular he has thought about over and over.

“I remember feeling weak. So weak that my vision was beginning to go ... I believe that if my parents (Ann and Bill Coon) were not in the room, this was the moment when I would have died ... I had an eerie feeling for a good two hours. I felt like there was someone else in the room with me. I could not see them, but I felt that they were watching me, waiting for me to give up. I didn't give in,” he wrote.

Now that he is going to class and living a normal life, taking just three medications a day, Coon said he also has a new outlook on what is important in life.

Before his first heart began to fail, he said he always thought getting good grades would lead to a good college and a job where he could make a lot of money. That's not so important now, he adds.

“You have a whole new outlook on everything,” he said. “Your life is not measured by the number of cars or yachts you have.”

Coon said he does not give a lot of thought to the future or whether his second heart and new kidney will eventually need replacing.

“If it does happen again, so be it. Game on again.”

Right now, he wants to focus on helping others who have gone through similar medical problems. He has contacted charities and given them complimentary copies of the book. And he continues to volunteer for Donate Life Illinois, a coalition of agencies that inspires people to donate organs so others may live or enhance their lives.

“I firmly believe this is my mission. I feel I was more blessed than I was cursed,” he said.

For more information about Bill Coon and his book, see billcoonbooks.com.