Above: An Ontario woman with a rare liver disease can only survive with the help from a living donor. While none of her family members are a match, Mary Giavedoni’s campaign is getting a boost from someone who has been in her shoes. Christina Stevens reports.
There was a pause, a look and a hug. Mary Giavedoni and Lily Sorbara had never met before, but they had an immediate connection. An inside knowledge, a shared pain. When Lily asked how she was doing, Mary’s response was a simple, “Hanging in there.”
Lily grabbed her hand and replied, “Oh honey, that’s all you can do.” Lily was now firmly in Mary’s corner, with a plan that both hope will turn out to be life-saving.
A single mom, 43-year-old Mary’s liver is failing. She has been in and out of hospital 34 times in the last year and a half and has less than 10 percent of her liver function left.
“It’s been deteriorating, my liver function has been going down rapidly and now I’m coming towards the end,” she said, “It’s critical, it’s critical for me.”
READ MORE: Little girl’s organs her ‘final gift to the world’ following car crash
It is hard to believe how much she has already been through. Seventeen years ago her liver failed and she had a transplant. But years of being on immunosuppressant drugs for that took their toll on her body, and resulted in non-Hodgkin lymphoma. She had to undergo aggressive chemotherapy and her liver didn’t recover. She developed portal vein thrombosis, which has been blocking the blood flow to her liver from her heart.
She is struggling to cope. “This is, you know, it’s been really hard. I wasn’t expecting it and I feel very desperate at times. I want to continue,” she said.
The only thing keeping her going is her 11 year old son Luca: “I’d like to see my son grow up. I’d like to see him go through high school and graduate. I’d like to see him go to university, get married. I’d like to be there.”
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Five years ago Lily was in the same place. A single mom to a teenager, she had a rare disease and her liver was failing. She was in the hospital, barely grasping to life when her daughter, 19-year-old Alyssa Sorbara went public with a plea for a living donor. Alyssa wasn’t a match and didn’t want to lose her mom. After their story aired on Global National the response was overwhelming. People started calling and emailing saying they would be willing to be tested to see if their liver was compatible. Lily took a turn for the worse though, and slipped into a coma before anyone could go through the entire assessment process. Ultimately a deceased liver came through in her last hours, saving her life.
Now Lily is thriving, and she still has the names and numbers of the people who came forward offering to help her. So she is paying it forward. She is going through the entire list, calling every one of those numbers asking if they would consider donating part of their liver to save Mary’s life.
READ MORE: Organ donation shortfalls in Ontario hospitals without transplant programs
She said meeting Mary brought back terrifying memories, but it was also beautiful, “It was like seeing someone that you can finally be on the other side now and hold and tell her its going to be okay, trust me.”
Lily said she believes Mary will be saved, and is pleading to anyone who is listening.
“She needs your help and I know that someone out there is more than willing to give part of their liver for her and that’s all I ask is please, please help her.”
Live liver donations
Donating a part of your liver requires lengthy testing and means undergoing surgery, but to think that you could recover completely and save a life is astounding. Dr. Gary Levy specializes in liver transplants at UHN’s Toronto General Hospital, which runs the largest live liver transplant program in North America.
He said the demand is huge. There are about 350 people in Ontario alone awaiting a liver transplant right now. Levy said the true number in need is even higher, but because of the scarcity of organs not everyone who needs a transplant is listed. If you are put on the liver transplant list there is a 30 percent chance you will die before one becomes available. Part of the problem is that Ontario lags behind other jurisdictions in the number of people who sign their donor card.
“It’s an unfortunate circumstance. We’re trying to improve deceased donation here in the province, but at the moment live donation is helping fill an important gap.” said Levy.
This year at Toronto General they hope to do between 70 and 80 live liver transplants and about 110 deceased liver transplants.
Levy said for a live donor, “It’s a very significant operation and a big commitment”, but the liver regenerates completely. While there are risks involved, in his program they have never had a fatality among donors.
The prognosis is excellent for recipients; over 95 percent after one year (slightly better even with a live liver transplant over a cadaver liver transplant).
Levy said to see the results of live liver transplants is rewarding and he admires the donors, “I think live donors are quite special, they are remarkable.”
Here are some quick facts about becoming a liver donor:
– typically you must be at least 16 years old and no older than 55
– starts with a blood test and questionnaire about your health history
– you must be in good health, this is non-negotiable
– you must be the same blood type as the recipient, then further tests are required to ensure compatibility (things like ethnicity and gender are not factors)
– you have to go through a series of tests to make sure you have enough liver to sustain the life of the recipient and leave you enough
– doctors usually remove about 60 to 70 percent of the liver, leaving 30 to 40 percent in the donor (it fully regenerates)
– recovery: no heavy lifting etc. for 6 to 8 weeks, full recovery takes 8 to 12 weeks (the younger you are the faster your liver grows back
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