“If you know anyone with a liver, you have my cell number,” said Sam Greenspon.
The husband of Leslie Kaufman has been with his very ill wife at Toronto General Hospital anxiously awaiting a liver transplant for her.
An emergency search is on for any members of the public interested in being a live liver donor.
“Things are basically in a holding pattern,” said Greenspon.
A living liver donor does not have to be a blood relative, but must have a compatible blood type. Kaufman is A-positive which means that types A and O are compatible.
“I was going to be first in line, but I read the guide and I can’t do it because age 60 is the cut-off,” said Greenspon, 62.
Kaufman was appointed vice-president, corporate services, of the Jewish Federation of Ottawa and Ottawa Jewish Community Foundation in October 2013. She celebrated her 56th birthday in hospital.
Greenspon said that support for his wife from Ottawa’s Jewish community has been amazing.
“Andrea Freedman of the Jewish Federation of Ottawa said to me the other day, ‘it’s in our DNA to want to help.’ That really struck a chord with me and a lot people can identify with that,” he said.
Kaufman also has a vertebrae fracture in her back, which is a byproduct of the accelerated osteoporosis caused by the disease.
“It’s an autoimmune disease called PBC, and she first found out she had it last winter,” Greenspon said. “When we look back, we see it just wasn’t recognized earlier. Last fall, an antibiotic for bronchitis triggered a jaundice look. She was referred to Dr. Linda Scully who diagnosed it.”
PBC – primary biliary cirrhosis or primary biliary cholangitis – is marked by slow progressive destruction of the small bile ducts of the liver.
Rabbi Reuven Bulka, long an advocate for organ donation, launched the search for a live liver donor for Leslie Kaufman when he sent a mass e-mail, October 20, to the Jewish community appealing “not for money, but for LIFE.”
He said his act to support her was nothing special.
“I don’t think anybody in the position I’m in would do it differently,” said Rabbi Bulka, rabbi emeritus of Congregation Machzikei Hadas, and chair of the board of the Trillium Gift of Life Network.
“If you don’t do it, it’s fundamentally wrong,” he said. “Anyone who knows someone who needs a kidney or a liver should consider organ donation. With the Trillium Gift of Life Network, nobody jumps the queue. We encourage people to sign up through the Internet.”
A live liver donor makes a great sacrifice, said Rabbi Bulka.
“There is a very exacting screening process. It’s not only physical, it’s psychological to make sure that it’s not just the excitement of signing up. You have to carry through. In some situations, you might be a terrific match and go forward. If not, you’d still be on the list of potential donors and you could be called again a year later.”
In his e-mail to the community, Rabbi Bulka explained that Kaufman, “a devoted member of our Ottawa mishpacha, a beloved wife, stepmother and doting grandmother, is battling a pernicious liver disease that threatens her life.”
There are currently close to 300 people waiting for a liver transplant in Ontario. According to the most recent Canadian statistics, in 2012 there were 2,124 organ transplants, and 256 people died waiting for a donor.
Last spring, Ottawa Senators owner Eugene Melnyk, 55, received a liver transplant five days after making a public appeal for a live donor. Rabbi Bulka dismissed critics of the Melnyk appeal.
“The need is the same in Leslie’s situation,” he said, stressing there is only a waiting list for deceased donors’ organs, not for live donations.
“Using the media to get people engaged is a win/win. It increases people’s sensitivity… The publicity will save the lives of so many people. There is no reason to complain here,” said Rabbi Bulka.
The Melnyk case also brought forward many people who will to donate to someone else, and broadened awareness of the need for live organ transplants.
Bram Bregman, vice-president, community building, at the Jewish Federation of Ottawa, was one of the first to apply to be a possible donor in support of Kaufman.
“It’s a big decision, a heavy decision, to make,” said Bregman. “It’s a serious operation. It’s safe but requires recovery time and time off work.”
Bregman said he made the decision to quickly after discussing it with his wife and Rabbi Bulka.
Bregman took to social media to help spread awareness of the need for potential donors to come forward. He shared his personal story and said he’d be happy to speak to anyone about it.
“I am writing to ask your help in spreading the word about a lifesaving appeal for my dear Federation colleague, Leslie Kaufman, who is in urgent need of a match for a live liver donor transplant,” Bregman wrote.
“With 100 per cent support by my amazing wife, I have submitted the paperwork to be tested myself to be able to donate a portion of my liver to her. Although I feel nervous, especially with 15-month old twins at home, I felt it was the right thing to do. I have been raised in a family and a community that taught me to think of others, to be a giver, and that life matters more than anything else – and this is what I want to pass onto my children.”
Bregman continued, “The first stage is completing a medical form and giving your blood type. The doctors do an assessment and then decide if they want to proceed. The chances of being a match are so slim that they need a wide selection of potential donors from which to choose.”
After transplant, the donor’s liver begins to regenerate almost immediately and will have almost completely regenerated within two months.
The following information is excerpted from Rabbi Bulka’s email to the community:
There is a Program for Reimbursing Expenses of Living Organ Donors via the Trillium Gift of Life Network which helps ease some of the financial responsibility related to the organ donation.
For more information on becoming a living liver donor, please see the Donor Manual.
The completed form, along with proof of your blood type and the Documentation to be Assessed Form (found on the last page of the Donor Manual), should be submitted via fax or email to the Living Donor Assessment Office at 416-340-4317 or firstname.lastname@example.org.
For any questions regarding the living liver donation process, contact the Toronto General Hospital’s Living Donor Liver Office co-ordinator at 416-340-4800, ext. 4711.
For more information on organ donation in Ontario, visit www.beadonor.ca.