Mom Will Die Within A Year-And-A-Half Without Liver Donation

WORCESTER, MA—Kimberly Callan has been severely sick since last summer, in and out of hospitals before that. She hasn't stepped out of UMass Memorial Medical Center in Worcester for a single night since December, and has played a whole lot of Scrabble.

"Living in constant pain, a weakened body and the need for naps all day and night are the easiest thing to look at," Callan told Patch. "And because of pain levels, I only sleep three hours maximum. I know the night staff pretty well and have watched more infomercials than anyone I know. One goal of mine when I go home is to buy the Luminessair air brush makeup system!

"Not being in control of my health or life or body made me somewhat depressed. I try to stay busy with writing, catching up on films and visiting with other long-term patients like.me. Plus, family and friends visit almost daily."

She's finally got a name-or names-for what's made her so sick for so long. Recently, Callan was diagnosed with a genetic illness that is passed through DNA. The illness, called hemochromatosis, would kill Callan within a year to a year and a half without a living donation of a piece of a human liver. The actual disease she has been diagnosed with is Wilson's.

"It has a wide range of symptoms, which I've shown for at least 7 years but was misdiagnosed every time a new symptom arose," she said.

There is no single test to determine if someone has Wilson’s Disease. Instead, it’s a combination of symptoms and often failure of a multiple major organs that leads to the challenging diagnosis. Callan explains that her body basically holds on to copper, and then that copper hides out in the major organs. She's also anemic.

"Thinking about passing away before 50 is scary but not as scary as passing away before 'Lil K' reaches Junior High," she wrote.

'Lil K' is her daughter Katie, who is 8. She knows her mom is sick, and she knows she is looking for an organ to make her better.

"Her father and I decided to tell her around St. Patrick's Day that some people with illnesses like mine do die," Callan told Patch. "She asks me at least three times a week, 'When am I coming home forever?'"

To live, Callan needs a part of a healthy Type O liver. The type isn't overly common.

"There are financial incentives put in place for someone to be able to donate and recovery time is very short now, compared to the past," wrote Callan, who said she would provide more information to any prospective donors.

Last week, she was approved to be on the national transplant lists to receive a cadaver liver.

"It was great news!" writes Callan. "But chances are I won't live long enough to receive one because lists are long and I have the rarest organ type."

Facing the reality of the diagnosis also had a spiritual impact on Callan, making her question that faith instilled in throughout her childhood. Attending 12 years of Catholic school at Our Lady of the Angels and then Holy Name, she says they were not taught to "memorize dogma," but to ask questions and accept God on terms that made sense to them.

"One teacher who stood out was Mrs. Olsen, who taught religion classes to us as if we were intelligent creatures and not just minions," said Callan. "So when I found out I could pass away sooner than later, I didn't worry for myself. I was much more concerned with how losing a mother as a child would affect my daughter - a fairly natural thought but it's all I thought about for weeks."

Callan said that she hopes that letting her extended family read what's gone on might save them or their kids some heartache. In terms of appealing to the masses, she hopes that overall awareness about living donor donation improves.

"And yes, if something amazing happens, like finding my own personal donor, I’d be blessed to have that happen," said Callan.

Anyone wanting more information or with the ability to help can email Kinneycallan@gmail.com or contact the Transplant Clinic at UMass.

Photo via Kimberly Callan