Kim MacLennan, left, is hoping against hope that a new “live” liver donor can be found so that she can undergo a transplant. A massive cyst, growing up to the size of a watermelon, has made her life miserable and created a litany of complications including weight loss, hair loss and led to what is believed to be a small stroke. She’s tried to keep her chin up, and even helps her daughter Alex study for exams.
Kim MacLennan understands the gravity of the request she is making - but the Cornwall teacher has to ask anyway. She's literally a one-in a-billion liver patient.
MacLennan, a mother of two who teaches at Holy Trinity Secondary School, has ridden a medical roller coaster over the last nine years that is mercifully pulling into the station with a diagnosis that she needs a liver transplant.
The problem is the train is likely to pull away again for another run around the track, because the bureaucracy of transplant policies in Ontario means she must search high and low for a "live" liver donor who is willing to undergo an invasive procedure to share part of their life-sustaining organ with her.
"It's very easy to say go for the transplant," she said, tears streaming down her face. "But when you're the person getting it done, there are questions."
No kidding - like who out there is willing to submit to a surgery that will last several hours and involve giving up half their liver?
MacLennan, who is on medical leave from her job, has been suffering with a cystadenoma - a cyst with "a mind of its own" attached to her liver. She said she is one of only nine in the world to have such a condition.
The destructive mass, filled with bile, has grown so large over the years that it once rivalled the size of a watermelon. It has completely destroyed two of the three veins that transport blood through the liver and is now so big it is beginning to actually rotate her right kidney.
Complications since the cyst was discovered in 2002 read like a medical resume from hell. Tubes have been inserted in the cyst to help draw away the bile which adds to its size. But with no bile being used to help her digest food, MacLennan has lost 90 pounds since last summer, her hair is falling out and she has little to no strength.
But with alll these problems, she is still not a top candidate for a liver transplant.
"The funny thing is, my liver is healthy," she said, adding her liver does not meet the criteria to be matched with a so-called "dead donor" - someone killed in a car accident, for example, who has consented to have their organs donated.
So she has been pushed further down the waiting list and now must hope a "live" donor can be found who wants to help.
The good news is within two months the liver, the only organ in the human body to do so, will grow back to normal size. So, following surgery, the donor will return to living a normal life.
MacLennan's son Kyle is being assessed to determine if he is a match for his mother. If not, MacLennan and a team of physicians will have to broaden their search for a donor.
"Everything we've done to get rid of the cyst has gone wrong," she said, referring to a litany of surgeries and procedures over the years that have been unable to separate the cyst from her liver. One surgery, completed years ago, resulted in two-thirds of the cyst being removed. But in a matter of weeks it had returned to normal size - maybe even a bit bigger.
"I have to find people who are willing to be tested," said MacLennan, who is supposed to meet with transplant officials any day now for more assessments. "Then they have to agree to the transplant."
The Trillium Gift of Life Network (www.giftoflife.on.ca) in Ontario governs live liver donations in the province and all other tissue and organ procedures.
A potential donor must be in good overall health and physical condition, older than 18 and younger than 60, have a liver that is the right size for the recipient, similar blood type and similar body size.
"I keep my fingers crossed," said MacLennan. "You don't think about these things when you don't have to.
"Now I have to."