2016-09-22 / News

Biddeford family lives with mother’s chronic kidney disease

By Anthony Aloisio
Staff Writer


Hailey Woodman, 16, and Shannon Hussey, 43, of Biddeford. Hussey lives with kidney disease and has waited on a donor list for at least six years. Donors for her blood type are rare and she recently began using window decals on cars of friends and strangers alike as a new strategy for finding donors. (Ben Meiklejohn photo) Hailey Woodman, 16, and Shannon Hussey, 43, of Biddeford. Hussey lives with kidney disease and has waited on a donor list for at least six years. Donors for her blood type are rare and she recently began using window decals on cars of friends and strangers alike as a new strategy for finding donors. (Ben Meiklejohn photo) BIDDEFORD – Shannon Hussey and her family have carried on with their lives for the past five years while Hussey has been without kidney function, but haven’t stopped their enduring optimism and constructive thinking.

Her long wait on the kidney donor list recently prompted her to try new strategies for attracting donors. She has a Facebook page, “Shannon Needs A Kidney,” and distributes large stickers to be applied to car windows. The stickers have her blood type and phone number.

“I have at least, about 22,” Hussey said, adding that a friend designed and printed them for her. “I’ve delivered every single one of them.”


Shannon Hussey, 43, of Biddeford, with a NxStage dialysis machine. Hussey has kidney disease and must perform a dialysis procedure four times per week. The machine allows her to do the procedure from home, and even to travel, rather than to make frequent doctor visits. (Ben Meiklejohn photo) Shannon Hussey, 43, of Biddeford, with a NxStage dialysis machine. Hussey has kidney disease and must perform a dialysis procedure four times per week. The machine allows her to do the procedure from home, and even to travel, rather than to make frequent doctor visits. (Ben Meiklejohn photo) “Probably six of the stickers are on friends’ cars,” Hussey added. “The rest of the people I’ve never met before.”

Hussey, 43, was born with kidney disease in the 1970s. That condition became serious in 1996 when her son was born, and progressed to the most difficult stage in 2010. Now, Hussey must perform dialysis continually to support her life.

“I have two (needles). Four days a week,” Hussey said.

Each needle connects to a tube: One tube pulls the blood out and through the dialysis machine, which cleans the blood the same way a kidney would, and the other tube returns the blood to her.

“It cleans my whole blood over a three-hour period,” she added.

Kidneys serve the vital bodily function of cleaning metabolic waste material from the blood.

“If I were to stop dialysis today, I would die within four days.” Hussey said. “My machine is my lifeline. It’s that serious.”

According to the National Institute of Diabetes & Digestive & Kidney Diseases, about one in 10 adults in the United States has some form of chronic kidney disease. The great majority of those people are older than 60 and the most common treatment for kidney disease is dialysis. Hussey’s care provider is York County Dialysis in Biddeford, where she said she knows of dozens of patients from within York County.

Hussey isn’t the only one who carries her burden. She lives at home with her husband, Jason, and daughter, Hailey.

“I’ll find myself either calling out of work or pulling myself out of school to take my mom to doctor’s appointments if she needs it,” said Hailey, 16.

The struggle is real on an emotional level too, she said.

“I have to live every day like it’s not happening.”

Jason, Hussey’s husband, plays a large role, too.

“My husband is my nurse,” Hussey said.

Jason, a mechanic, received training to support Hussey’s medical needs and draws her blood for use in monthly lab analyses.

Hussey’s 20-year-old son and mother also have kidney disease. Her son is on dialysis and is also in need of a kidney donor.

The three weeks following Aug. 26 have been especially eventful for Hussey and her family. On that day, she was called by Massachusetts General Hospital with news that a deceased donor had an available kidney.

“We were all excited, packed up and drove to Boston,” Hussey said. “Four hours later, after having the transplant, I spiked a high fever, which is a sign of rejection.”

She ultimately lost the kidney.

Additionally, the transplant caused a dangerous blood clot that required surgery.

“These last three weeks have been very trying for me,” Hussey added. “And I just kept going.”

The process of finding a kidney donor is a difficult and frustrating one, especially in Hussey’s case. Her blood type is O, which means that she has the smallest pool of possible donors, and therefore the longest wait. And when a donor is found, it’s never a guarantee. The August donor had not been Hussey’s first; in 2010 she received a kidney from her living mother-in-law, which was also rejected.

When a living donor is found, Hussey directs them to Massachusetts General, which applies an initial screening process. Candidates who make it through that phase are then given a physical exam and additional testing before a transplant can be attempted. In the past few months, Hussey has heard from four potential candidates, but all of them were eliminated at the initial screening.

“But I’m grateful that people called,” Hussey said.

Still, the frustration is something she has to deal with.

“I choose to just say ‘call Mass General,’ and leave it at that,” she said. “If it’s not a match, you just get knocked down a little bit.”

Another powerful source of frustration for people seeking transplants, Hussey said, is the legal scheme that applies to monetary expenses for organ transplants. Insurers pay for medical expenses and transportation, but fall short on leave from work. If an organ recipient wants to pay a donor for that lost work time, they run into a legal roadblock.

“You can’t pay somebody for their time lost from work,” Hussey said, “because it’s giving them money toward organs.”

Any payment by a recipient to a donor for an organ donation is illegal, Hussey said, and that only makes it more difficult to find a donor.

The long odds and frustration are what finally prompted Hussey to try car sticker advertisements, but it took a while for her to feel comfortable with the idea.

“I felt awkward,” she said. “You know, does it sound like I’m begging for someone’s help? Does it make me weak because I don’t want to wait six years on the list? I take pride in myself.”

However, after years went by, Hussey learned that the strategy was one that worked, and saved lives. “And then I thought, ‘well, it doesn’t make me weak for asking for help, it makes me normal.’”

Optimism is characteristic for Hussey.

“I try very hard to stay positive,” she said. “I have a daughter that looks up to me. I try to teach that you push through.”

Keeping a good attitude is more than a matter of life quality; it’s also a matter of survival.

“I’ve seen a lot of people give up. I’ve seen a lot of people die,” Hussey said. “But I won’t quit.”

To stay positive, Hussey focuses on her new hobby – motorcycle riding.

“A lot of times, you get so fixated on being sick that you forget that you’re able to do things,” she said. “So I had a bucket list. I decided on April 30 that I was gonna go get my motorcycle license. Why not?”

Because of the recent transplant, Hussey is unable to ride for the next 12 weeks, but she looks forward to how it makes her feel.

“Everyone knows me as ‘Shannon who needs a kidney,’” she said. “‘The woman who has the car decals.’ ‘Jason’s wife who’s on dialysis.’ ‘Hailey’s mom who’s sick.’ But when I ride my bike, I wear my helmet and all my gear. I look like everybody else on the road. I’m free.”

Hussey prefers to be contacted about a kidney donation through her Facebook page, which can be found by searching Facebook for “Shannon needs a kidney.”

Contact Staff Writer Anthony Aloisio at news@inthecourier.com.

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