What happens when a lifesaving organ fails?
Dr. Aubrey Goldstein needs a second liver transplant, 19 years after his first
In 1998, so sick he was at death’s door, Aubrey Goldstein had a liver transplant. It bought him time — saved his life, certainly — but it was also a clock that had begun to tick.
Now 19 years later, freshly retired, he putters around his lovely Glebe home, often exhausted, keeping a slow watch: At age 63, he needs a second liver transplant to survive.
“I will eventually die when my liver fails,” he said, when asked about the prognosis without a new organ.
He knows of what he speaks. Aubrey Goldstein is Dr. Aubrey Goldstein, a lifelong physician and the former president of the Canadian Transplant Association.
And he is alive to the idea that some patients are desperate for their first donated organ — some even die waiting — let alone a second.
“It’s hard,” he says. “It’s difficult to say, ‘Oh, I’m more worthy than someone else.’ I mean, how do you draw the line? How do you balance the scorebook, for people who are looking for their first transplant?”
His first liver was from a cadaver. His best shot this time is to find a live donor — an operation rarely used on adults 20 years ago but successfully done 51 times in Ontario last year. To that end, several family members and friends are being tested to potentially donate part of their livers, knowing the organ will regenerate itself.
“I’m really hopeful that one of those people will be a good match.”
Transplantation, after all, is like the family business. His wife, Caroline, donated a kidney to a friend, and her sister, Annemieke Vanneste, donated a kidney to a complete stranger.
A Windsor native, Dr. Goldstein first began to feel ill when he was at medical school in Hamilton in the early 1980s. Despite seeing a number of specialists, it took 13 years to finally diagnose primary sclerosing cholangitis, a chronic disease that narrows the bile ducts and has severe impacts on the circulatory system.
He was in crisis when he flew to London, Ont., in May 1998 for the first transplant, which turned his life around.
His energy returned, he took up many of his old physical activities — golf, tennis, cycling, hiking, running — and competed in transplant games in Canada and distant places like South Africa and Australia, piling up some 20 medals that hang in the basement workout room.
His professional life, meanwhile, thrived. Once an emergency room physician, he worked at Bruyère Continuing Care (rising to vice-president) and at Health Canada, where he studied transplant medications in the clinical trials office.
“I’ve been incredibly lucky to have 19 extra years. And I’ve done a lot of things in those 19 years. I haven’t waited until I retired to travel, see the world.”
He began to feel sick about 18 months ago, he said, with telltale symptoms he knew too well: unexplained fatigue, itchiness, weight loss. “You wake up tired, you go to bed tired and I need naps almost every day.”
So, it has hardly been a dream start to the golden years. “Most of the time since I retired last year has been spent in that chair, reading.”
Second organ transplants are fairly uncommon. Since 2012, there have been 1,277 liver transplants in Ontario. Of those, 25 needed a second transplant in the same time period. Currently, reports the Trillium Gift of Life Network, of those who received a transplant since Jan. 1, 2012, six are waiting for another liver.
The risks are also higher with a second transplant.
Dr. Les Lilly is medical director of GI transplant at Toronto General Hospital, one of the most active such centres in the world and where Dr. Goldstein is on a waiting list.
“The liver doesn’t come stamped with an expiry date,” he said Friday. Repeat transplants are generally needed because of a technical/medical problem with the first operation or because the original disease returns to attack the new organ.
He said the hospital tells patients that mortality rates double with the second transplant, rising to between 10 and 20 per cent. And those higher risks, he explained, factor into the approval process.
“I think it’s safe to say that patients waiting for a re-transplant are scrutinized even more closely because that balance of risk and benefit is a little bit harder to kind of get around,” he explained.
“If you had a liver transplant 15 years ago and the graft fails, you’re not automatically going to be entitled to be listed for a second transplant.”
The team needs to be “careful and measured stewards of a scarce resource,” he added, because there are always more patients than organs.
Dr. Goldstein, meanwhile, thinks he has 12 to 18 months to live if he doesn’t get a new organ.
“If we’re getting close to the end and I don’t get another transplant, I don’t regret anything. I lived a full life,” he said, expressing gratitude for everyone who has stepped forward to help him.
“A couple of people die every day on the transplant list. I’ve been super fortunate. If this is it, I have to accept that.”