Tony’s story: The call that never came

For Debbie Neville, telling her side of the organ and tissue donation story isn’t easy.

“Where do I start?” she says with a nervous shake in her voice. Her story actually starts 27 years ago in an emergency department.

“Tony is…was my husband,” says Debbie, a registered nurse and a manager in surgical services at the Cape Breton Regional Hospital. “We met on the job. I was a new nurse starting out and he was a paramedic. It was a typical nurse and paramedic romance. We married five years later.”

Together, they had a good life. Tony loved his job. He was active, healthy and held a black belt in tae kwon do. All that changed the night Tony, 45, came home from work with stomach pain. They both assumed it was a result of something he ate or was just tired. Tony called in sick to work, something he never did.

The next day, Tony went to the emergency department and was taken into surgery. After surgery, it was discovered that Tony had advanced liver disease. Months later, he was diagnosed with adult on-set cystic fibrosis, that most likely caused the liver failure.

Tony was referred to doctors in Halifax and though neither he nor his wife knew it then, he would never return to work. 

“He missed working terribly,” says Debbie. “He loved his job. He loved his patients and he loved his co-workers.”

In November 2013, Tony’s condition worsened. He and Debbie were told that he would require a liver transplant. They went to Halifax for testing and learned he would be placed on the transplant list. By June 2014, Tony’s condition was such that he had to stay in hospital in Halifax until he received his transplant. Debbie began travelling back and forth, spending weekdays working in Sydney and weekends at Tony’s bedside.

“We believed he was going to get a liver,” she says.

In July 2014, Debbie was at work when she got the call she’d been waiting for. “I asked Tony why he was crying and he said they found a liver,” she says. Debbie packed up and headed for Halifax. When she stopped at the Canso Causeway to check on him, she was stunned as Tony told her “I’m not getting the liver, it needs to go to someone else.” Debbie drove on. When she arrived, Tony was alone in his hospital room and still devastated over the news. Debbie admits she was angry but Tony was concerned about the patient undergoing the transplant.

“He asked if I could find out how the person who got the liver was doing,” she says. “He was happy for them. I knew I couldn’t find out, but I told him I would.”

Then, Tony’s kidneys began to fail. He was put on a list for both liver and kidney transplants. With his condition fading, Tony’s doctor told him he was too sick to receive a transplant.

“It was time to come home,” says Debbie.

Although they both worked in health care, the possibility he would die waiting for a transplant never crossed their minds. 

“We never questioned that Tony wasn’t going to get his transplant,” says Debbie, “We thought once we got through the low point, he would get better.”

On their way home that September day, they were met by Tony’s fellow paramedics who escorted them to the emergency department at the Regional Hospital. The typically whirling atmosphere froze in respect. 

“I can remember vividly the whole room just stood in place,” says Debbie. “You could hear a pin drop. The staff knew why we where home…they were in disbelief.”

Three hours later, Tony died, with Debbie, his family and friends by his side.

“You always question your decisions,” she says, “but I’ll never question bringing him home that day because he got to say goodbye. He was at peace to be home.”

Now, Debbie’s mission is to start a better dialogue around organ and tissue donation. She’s off to an amazing start. This year, she organized Tony’s Trek, an annual event to raise organ donation awareness. The event also raises funds for a scholarship for people entering advanced care paramedic training. Debbie has told her story at workshops and at a national conference organized by Canadian Blood Services (CBS). She has also been invited to speak at national committee meetings for CBS.

“As medical professionals, we have a responsibility and an accountability to have conversations with patients about what they wish to do with their bodies given a sudden, devastating health change with poor to no possible recovery,” she says. “With more donors, maybe what happened to Tony wouldn’t have to happen to another person. If as a result of this, one more person gets an organ, I’ve done my job.”