TORONTO — Sam Marr is on the hunt for a hero. For 27 years, he has been fighting a serious liver condition, and the time has come to find a living person willing to donate a portion of their liver.
The 50-year-old Toronto lawyer said he was diagnosed with primary sclerosing cholangitis when he was a 23-year-old law student. The disease comes with a gloomy prognosis. Although it is treatable, most people who contract PSC will ultimately either need a liver transplant or the disease will result in death. Throughout the years, Marr said he knew that one day, he would probably need a transplant – it was just a matter of time.
Every few months he was required to get blood work done, monitoring the progress of the disease. Recently, the doctors discovered he had a dangerously high MELD score – a scale that measures the severity of chronic liver disease, and is used to determine who gets priority for transplants. If his score continues to climb, and it reaches a score of 20, there is a 20 per cent chance he will die within three months, according to his wife, Susan Marr.
In February, Marr said he told his wife and 18- and 16-year-old sons, Darren and Adam, that he finally decided to put his name down on a waiting list for a deceased person’s liver.
“It was probably one of the most difficult moments we had ever experienced as a family,” said Susan Marr with a pause as she searched for the words to describe the memory. “The kids were devastated to hear the news.”
Although Marr’s name has been on the waiting list for months, his circumstances have placed him far down the list. The waiting list prioritizes by need, and as of now, his liver isn’t deteriorating as quickly as some people with other diseases that worsen at a much faster pace, he explained.
“I’m coming to work and working a 40- to 50-hour week,” he said. “I have some issues, sometimes I’m tired and so on, but I’m still functioning.”
However, his situation could change quickly. He described it as jumping out of an airplane without a parachute.
“When you’re halfway done, someone asks if I’m OK and I’d say I’m fine… until I hit the ground,” he said. “Right now, I’m probably not sick enough, but I’m going to get that sick and when I do, there might be not enough time.”
That’s why he’s hoping for a live-donor liver transplant. If he can find one soon, he could complete the transplant while his body can still accept it and possibly fully recover.
According to the British Columbia Transplant Society, a living-person liver transplant involves moving a portion of the donor’s liver into the patient. The surgery can take up to 10 hours, and usually keeps the donor in the hospital for seven to 10 days.
Unlike most other organs, a living donor’s liver will grow back, repairing any damage from the surgery. It typically only takes a few months for the recipient to completely return to his or her normal life, according to the transplant society.
As Marr has type A blood, a potential match must have either blood type A or O. Either positive or negative would be acceptable. That’s the first hurdle, Marr said, and once a person passes that requirement, the chance of them being a match is one in six. The match should be somewhat anatomically similar, he explained, though this does not have to be exact.
“As I understand it, you couldn’t put a 6-foot-10 basketball player’s liver into a small ballerina,” he said, “but it’s not that narrow, either. You have to be broadly matched.”
Unlike some other transplants, there is no benefit to being a relative, he said. Anybody with the right blood type could be a match.
A prospective donor would visit Toronto General Hospital and undergo evaluation to confirm eligibility. Marr said this hospital is highly scrupulous in their assessment.
“They’re justifiably proud that they’ve done hundreds of these and no live donor has ever died [from the procedure],” he said.
Although the odds of finding a match is greater than some other transplants, Marr has been unsuccessful so far. Several friends and family members have been evaluated, but so far none have been deemed a match.
Susan Marr said living with the disease in her family has made for a very difficult journey, but she’s hoping someone will be able to save her husband’s life.
“Living with someone who you love and adore, and watching them struggle with such a horrific illness is very difficult on the entire family,” she said, “but we remain hopeful and optimistic. We’re hoping the world will listen to our plea and come forward and want to help our family.”
For information about becoming a living donor, contact the Living Donor Transplant Office at Toronto General Hospital at 416-340-4800, ext. 6581, or email firstname.lastname@example.org