‘OUR LAST HOPE’
Dying Windsor woman searches for liver donor
Shortly before Greg and Gloria Mahoney renewed their wedding vows, they made funeral arrangements. Gloria’s liver is failing and she is dying. But she has been told she’s still not sick enough to get on the transplant list.
So the couple has set out on a desperate mission. In the hope of saving precious time for when Gloria does qualify for a new liver, they’re looking for a living donor. “This is our last hope,” said Greg, 70, a retired Ford toolmaker. “This is our Hail Mary. Everybody knows they ’re dying. It’s just that when you’re facing imminent death, it gets very real very fast. You make sure all your will is done, you’ve got your plot paid for. “It’s a sad thing to have to do, but you have to face reality.” Gloria Mahoney, 69, has primary biliary cirrhosis, an autoimmune disease of the liver. Her body ’s immune system is attacking its own cells. She needs a new liver. Gastroenterologist Rahman Bacchus, one of Gloria’s Windsor doctors, would not talk specifically about her case. But generally speaking, he said cadaver donors are in short supply, which is one reason for the relatively new approach of using live donors to treat end-stage liver disease. “Five years ago they never did it,” Bacchus said.
“Now they are doing it with increasing frequency in specific situations. Originally it was cadaver donors, but over the last few years we started doing more living donors. But it’s still not the most common form of liver transplantation.”
Unable to get on the wait list for a cadaver donor, Gloria has put her hopes in finding a living person willing to part with a piece of his or her liver.
Greg and Gloria Mahoney celebrated their 49th wedding anniversary on April 26, when they also renewed their vows. They met on a summer day in 1967. Greg was cruising around Brighton Beach in his 1966 Pontiac Acadian Canso. “Had the big motor in it,” he said. “Four-speed. A real hot rod.” There was a group of teenagers sitting on a front porch. Greg knew one of the guys so he stopped. He was talking to his pal, but he couldn’t take his eyes off a girl sitting there with curlers in her hair.
“She was just a sweetheart. She was just a nice-looking girl,” said Greg. “I loved her smile. Happy eyes, I call them, and a great smile.” Greg ’s friend asked him what he was up to.
“I said just cruising around looking for a date for tonight.” The pretty girl in curlers piped up.
“She says, ‘Well what’s the matter with me?’ I said, ‘Absolutely nothing. I’ll take you home, you take those things out of your hair and we’re going to go on a date.’ ” They married in 1969. Gloria started work at Windsor Chrome Plating in 1973. She now questions if decades of breathing fumes from toxic chemicals contributed to her health problems. In 1994, shortly after her dad died — he suffered from rheumatoid arthritis — she started having problems with her foot.
“My ankle and foot would not bend,” said Gloria.
Her doctor sent her to a rheumatologist. They did blood work. It showed something unusual. “They next day he called and he said ‘Gloria, I need you to go back and do another blood test,’ ” she said. “The blood test was the same. It was showing autoimmune disease.”
She was diagnosed with primary biliary cirrhosis.
“He said we can slow the progression of this with medication,” said Greg. “He said it will eventually cost you your life. It’s a non-reversible disease. Your liver will fail and you will die. We just don’t know when.”
Gloria stayed with the chrome plating company through name and location changes, and retired in 2008 after the plant was shuttered.
“Once the plant closed her health improved remarkably,” said Greg. “She had a normal life, basically up to now. There’s so much scar tissue there that the liver is just failing to work now.” Things started to unravel last year, when the snowbirds were in Florida.
“She got deathly ill down there,” said Greg. “She got bronchitis, then it went in to full blown pneumonia.”
Gloria spent four days in a Florida hospital.
“She just never came back from that,” said Greg. “They finally linked it to her liver disease. We just thought it was a lung issue.” Since then, it’s been a constant deterioration. Fluid constantly builds up in her lungs and around her heart. Her spleen is dangerously enlarged due to portal hypertension, or increased blood pressure. “Brain fog ” from toxins in her liver makes her forgetful and turns simple tasks into an ordeal. Gloria has made arrangements and settled her affairs. “We did everything because I was so scared,” she said.
Greg now spends his days trying to ease that anxiety. Six feet tall and 260 pounds, he has a handshake like a vice grip. But with Gloria, he’s soft as can be. Helping her stand from her favourite chair in the living room, guiding her with a gentle touch on the small of the back, and patiently holding doors, he nudges her along with a barely whispered “Let’s go sweetheart.”
Greg’s home office, tucked in the corner of their basement, has become “liver central.” It’s his base of operations for scouring the internet, researching his wife’s disease and looking for hope.
His desk is under a mountain of pamphlets about liver disease and organ donation, scribbled notes, and a sheet with names of potential donors.
“We’ve turned into a liver study centre here,” said Greg. “I’m getting an education.”
This isn’t how they planned to spend their retirement. They loved to travel. The couple owns a mobile home at Rondeau Bay and one in Florida. They both go unused. Greg used to have a fishing boat. “She basically can’t leave the house,” he said.
“We can’t do any of it.” Weeds grow next to their empty backyard pool. The live palm trees that usually adorn it still sit in the cluttered garage where they were housed for the winter. Robins are nesting in the tiki bar. Gloria’s beloved gardens are also overgrown and unattended. “I’m the type that loves playing in the dirt,” she said. “I can’t do it. My days are sort of useless to me. I have no energy at all. I sleep. It’s unbelievable. There’s no energy in my body.”
One of her local doctors recently referred her to a transplant specialist in Toronto. Briefly, there was hope. But the doctor there gave them bad news.
“She said you don’t qualify, you’re not sick enough,” said Greg. “She did explain to us, livers are few and far between. She said it’s a real problem, we just never have enough livers for the number of donors we need.” According to the Canadian Institute for Health Information, 223 people were on the liver transplant list in Ontario in 2016, including five children. That is by far the most of any province. Across Canada, 433 people were waiting for a liver.
The need became apparent when Greg and Gloria were waiting for their consultation.
“We met a whole pile of people in the waiting room, waiting for kidneys, livers, lungs, all kinds of things,” said Greg.
But the Toronto doctor suggested something no one else had mentioned.
“She said Gloria would be a great candidate for a living donor,” said Greg. “I was really amazed at the liver being such an organ able to regenerate itself. I thought, let’s go this route.”
One of the biggest advantages to a living donor is a much shorter wait time, according to the Trillium Gift of Life Network. The qualifications for a transplant, measured on a numerical scale called the Model for EndStage Liver Disease (MELD), are the same regardless of whether the organ comes from a deceased or living donor. But after they’re on the list, patients can still wait years for a deceased donor. Livers from living donors also tend to be healthier. The time to recover and transplant the organ is cut from hours to minutes, the surgery can be scheduled electively, and there is less risk of complications. Between 30 and 70 per cent of the liver is donated, depending on the age of the recipient. “Bearing in mind that the liver regenerates,” said Bacchus. “Within a few months it can regenerate into a fairly significant size liver.” The potential donor must meet health requirements, be a match to the recipient for blood type, and have the right size liver. There are also serious risks. Bacchus said a donor died in Toronto a few years ago.
Two surgical teams work simultaneously on the donor and recipient, in a procedure that lasts eight to 10 hours.
But while cadaver donors are in short supply, Greg said there also aren’t crowds of people lined up to give away hunks of their vital organs.
Growing increasingly desperate, he posted a message on Facebook with his phone number, hoping to get the attention of anyone willing to be a living donor.
“We need your help,” he wrote. “As you may or may not be aware of, Gloria is suffering from endstage liver disease. Her health is failing fast and needs a transplant.” Greg said he received responses from 10 people.
“It’s been phenomenal,” he said. “It just floors us. You see people come forward and offer such a selfless act, a gesture of immense compassion. That’s a major surgery. It’s not something to take lightly. It renews your faith in humanity.” One of the willing was Jason Carter, who worked with Gloria for 13 years. He used to refer to Gloria and Greg, who never had their own children, as mom and dad. “She was like a mother figure and we clicked the first day we met,” said Carter, 47. “She’s a very outgoing lady. Any time she is around somebody, she just lights up a room. There’s never any negativity around this woman. So for this to happen to her is a little more heart wrenching than normal.” Carter said he knows how invasive the surgery would be. He knows there are risks. He doesn’t care.
“For her, not a hesitation at all,” said Carter.
“She’s that good of a woman. I can’t put her up on a pedestal high enough.”
It’s still unknown if Carter and the others who made the offer will be matches. Greg is quick to point out that he’d be the first to be tested for compatibility, but donors must be between the ages of 18 and 60.
So he tries to take care of his wife in every other possible way. When she’s having a bad day and forgets what she was doing, or needs help standing up when she has no strength, he is there at her side. “Let’s go sweetheart. I got you, baby.”
She said you don’t qualify, you’re not sick enough. She did explain to us, livers are few and far between. She said it’s a real problem.