BY: KRISTINE BEREY
When Toronto resident Susan Groberman met her future husband, Sam Marr, more than 20 years ago, she instantly recognized him as the love of her life.As they raised their two boys, Darren, now 18, and Adam, 16, their bond became even stronger. They seemed to have everything.
But since the very beginning of their journey together a cloud has cast a shadow on their happiness—a major challenge they held at bay for years but now can no longer ignore.
“As our relationship grew, I learned that Sam had a serious liver condition known as primary sclerosing cholangitis, or PSC,” Susan wrote in a letter to family and friends. “PSC was a progressive disease, he told me. There was no cure short of a liver transplant someday. Sam remained hopeful and optimistic about the future, and so was I.”
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“Someday” came too soon as Sam suffered more frequent attacks of chills, fevers and intense fatigue.
“Sam’s doctors at the Toronto General Hospital are excellent and supportive, but they remain brutally honest with us,” Susan wrote. “Sam needs a liver and without a liver transplant Sam will die.”
He is on a waiting list for a transplant from a deceased donor. The demand for transplanted organs chronically outweighs the supply. Only 15 out of every million Canadians are organ donors.
According to the London Sciences Health Centre in Canada, in 2010, 2,153 organ transplants were performed, but 4,529 patients remained on the waiting list and 247 died while waiting. Of these transplants, 64 were livers that came from living donations—a ray of hope Susan holds on to.
Living-donor transplants began in the ’90s, primarily to save the lives of children. A small piece of an adult liver was transplanted into a critically ill child. The procedure is possible because liver cells regenerate within a few months. Around 1998, the technique began to be used on adults with positive results and since then the number of living donors has grown steadily to 550 in 2007.
In Quebec, an average of 50 transplants from living donors are performed annually, Transplante Quebec’s Brigitte Junius says. “It might be a spouse or a relative, but there is also a program that exists at the Canadian level called Living Donor Paired Exchange, so far only for kidney donors, who are not related to the recipient.
“The LDPE is a program run by Canadian Blood Services, which registers incompatible donor/recipient pairs into a database with other incompatible pairs to hopefully create an opportunity for two recipients to receive organs from each other’s living donor, thus increasing the chances of finding an organ from a compatible match. For non-renal patients across Canada, the National Organ Waitlist registry matches patients with donations from deceased donors.
The donor must be assessed to see if he is physically and psychologically eligible. “The risk to the donor will be weighed against the benefit of the patient,” Junius says. A potential donor must be in good health and of the same blood type as the recipient. For Sam, whose blood type is A, only one in six people will be a match.
“There are no guarantees on this path … but life is not about guarantees,” Susan writes. “It is about hope and it is about survival.”
Transplant Que.: 877-463-6366; Living Donor Transplant Office, (TO): 416-340-4800 ext. 6581; Susan Marr: firstname.lastname@example.org