Should an alcoholic who has drank himself into liver failure be allowed to die? Or does everyone deserve a second chance?
Diagnosed with end-stage liver disease, Chilliwack’s Gary Stevenot faces that question every day. He wakes up and looks at the calendar, knowing he may only have months to live. He hopes and prays he’ll get the phone call he needs, telling him a life-saving liver is available, and each day the phone doesn’t ring. He feels angry and frustrated. He understands why no one’s in a rush to give him that liver. He did this to himself, right? But he’s dying, and doesn’t everyone deserve a shot at redemption? If alcoholism is a disease, shouldn’t he be treated with compassion instead of judgment?
Stevenot doesn’t have the answers to these questions, but he does know one thing. He’s running out of time and he says he’s willing to do whatever it takes.
“I know that my family and my life are more important.”
Stevenot, 53, has been removed from the liver donation recipient list twice for alcohol relapses. He said one was for a false test result, but he fully owns the other. After “getting the runaround” from transplant list people and dealing with so much pain from so many liver-related health issues, he said he slipped. Just for a day, he was quick to add.
Stevenot said he only got back onto the list because he lawyered up and filed a B.C. Human Rights Tribunal complaint.
That last relapse was 21 months ago. First, he went to the hospital and then he ended up at an Alcoholics Anonymous meeting in a hospital gown, telling the assembled, ‘Look. This is what drinking can do to you. This is what end-stage liver disease looks like.’
“I told them straight up that I’m never going to touch another bottle of alcohol in my life.”
Since 2019, there is no longer a minimum period of abstinence that is required to receive a liver, but even though that rule is no longer on the books, Stevenot feels like it is. According to transplant guidelines, he still needs to receive a satisfactory report from an independent alcohol and drug counsellor and favourable assessments from the transplant program staff members who have expertise in the evaluation of patients with history of substance use.
When he talks to some within the health care system, he feels like he’s still drinking, that his alcoholism hangs like a sign around his neck.
“It makes me feel about that big (holding two fingers apart),” he said. “I know that nobody made me hold the bottle to my mouth. That was a choice I made that was wrong for me, because look at my situation.”
Caregiver Samantha Parrish takes Stevenot to appointments and listens in to some of his phone conversations with the transplant program and said he is offered little empathy. What she hears frustrates and angers her. She too feels his past is playing an oversized role in his future.
“He goes out of his mind with worry and feeling despair and there’s really nothing he can do but wait,” she said.
It would be hard to find someone in worse shape than Stevenot. He’s is six feet tall and used to work in construction as an assistant site supervisor/first aid attendant. Nowadays he looks frail, like a mild breeze might blow him away. His cheeks are sunken. He has tremors, subtle but noticeable when he sits down to talk. Parrish said he suffers daily from nausea, vomitting, headaches, dizziness, lightheadedness, mood changes, depression and loss of appetite. That’s not the complete list either.
“He is always unwell,” Parrish said. “There is not a morning, afternoon or evening that he feels well. He’s pretty strong to be going through this.”
He avoids going to the hospital, because he’s obligated to report those visits to the transplant program. When he does, he’s removed from the list for 48 hours, so he soldiers through pain most would find unbearable. He said the pain he feels some days hits the very top of the 1-to-10 scale and he doesn’t move at all. He said he used to be an active guy, playing and coaching sports. Now, more often than not, he’s bedridden.
“I can’t get out of bed, cook, clean, shower or eat,” he said. “On those days I can’t do anything.”
“My doctor sees it. My gastoenterologist sees it. But when I talk to the person with the transplant list, she doesn’t see the urgency. Every three or four months I get another date for another appointment, and that’s it.”
One doctor suggested Stevenot had a year to go last November. He’s a month away from this November, and may never see the next appointment he’s scheduled for.
There is anger. There is frustration. It’s only natural when you know your days are numbered. You just want to yell at people and make them see you.
But even if they see Stevenot, what do they see? Do they see a man who will get a donated liver and drink it to death like he did with this one? Or do they see a man who sincerely regrets the mistakes that he’s made, and is determined to not repeat them?
“I attend AA meetings. I go to counselling at Ann Davis Society. I do everything I need to do in order to move forward and not relapse,” said Stevenot, who is father to three grown children. “Whether I’m drinking or not, and I’m not, everyone in the system should be treated the same. When they asked me to donate organs I put yes. I didn’t put to whom or care about their background. I don’t look at it as a situation where this person doesn’t get it because they’re this, that or the other. I look at it as someone needs it, so yes.”
While time ticks away Stevenot looks around him and sees other people in his situation getting new livers, and he doesn’t know if he’ll get the life-saving phone call in time.
“Sometimes I think I will, but most times not, not at the rate we’re going,” he said. “It’s one day at a time for me, that’s all it is. When it’s your time it’s your time. At this point all I can do is think, ‘Let go, let God.’
Chances are you’ll read this story in the newspaper or online and the answer will come easy. But if you had to look this man in the eyes and say yes or no to a liver transplant, what would you say?
A GoFundMe has been set up to help Stevenot, who has not been able to work since 2021. Find it at www.gofundme.com/f/with-my-liver-transplant-medication-and-bills.