FREEPORT, Maine — Ten years after a doctor diagnosed her with a rare, potentially fatal liver disease that has ravaged her body and drained her bank account, Ann Day’s phone rang Thursday with the news she’s been waiting for.
Day, 30, has been placed on the list for a liver transplant.
“I called my mom crying,” Day said Sunday, sitting in the dappled sun outside her mother’s Freeport home.
“And then I called people crying,” her mother, Nancie Boudreau-Smith, 53, said.
Day, of Topsham, has autoimmune hepatitis, a rare disease in which the body’s own immune system attacks its liver.
“My body is trying to reject itself,” she said.
Over the last 10 years, Day estimates she’s been hospitalized on 30 different occasions — four or five in the past year alone.
Sometimes it starts with a common cold. Other times, a bout of ascites, when fluid builds up in her belly because her liver can’t filter toxins.
“It presses on my lungs or other organs and I can’t breathe,” she said. Recently a bout of ascites caused the lining of her stomach to perforate, resulting in an ambulance trip to Maine Medical Center after sepsis set in.
Lifting a satchel full of the 16 prescriptions she takes each day, Day recounts the side effects of several. On prednisone, she gained 50 pounds in one month.
“And the mood swings,” Boudreau-Smith said. “Very bad mood swings.”
With constant medical appointments and hospitalizations, Day has had trouble holding a job, and has twice been denied Social Security disability. And even though she has medical insurance through her now-estranged husband, the out-of-pocket expenses and deductibles are adding up.
But on Thursday, the family’s battle against her disease gained new vigor when she was placed on the transplant list.
On Tuesday, Day will drive to the Lahey Hospital & Medical Center in Burlington, Massachussets, to learn where she falls on the waiting list.
The urgency with which a candidate needs a liver transplant is determined on a scale of 6 to 40, according to the United Network for Organ Sharing.
Day has been told her number is currently 17 — but it’s been as high as 27.
Her mom, meanwhile, is attacking the illness on a different front.
Boudreau-Smith and her boyfriend, Doug Ellis, 59, are classic car buffs. They frequently hop in his 1967 RS SS Camaro convertible and ride to “cruise-ins” — get togethers such as the one held Monday nights at the Topsham Fair Mall.
Hoping to help her daughter defray the costs of the transplant, the lifelong medications she will need, and the months out of work, Boudreau-Smith recently began recruiting other classic car owners to submit photos of their vehicles for a “coffee table” book.
“I’d like to have photos and information about the cars — the year, the make, the model,” Boudreau-Smith said. “As soon I get about 100 cars, I’d like to go to print.”
Day, also a classic car lover, is helping the effort by donning a turquoise poodle skirt, saddle shoes and bobby sox and attending car shows with the couple, handing out fliers and urging owners of cars at least 20 years old to submit photos.
“It’s not like I don’t have my days,” Day said, smiling. “But it is what it is.”
She mentioned other transplant recipients she’s connected with through Facebook, who have told her that after receiving a new liver, “It’s like night and day!”
Boudreau-Smith marvels at her daughter’s positive attitude. And she’s determined to, as her daughter says, “make lemonade out of lemons.”
“I hope it will help,” she said. “She’s going to need a lot of money for the rest of her life. As a parent, it’s hard to see your child suffer, and to know she’s going through this. I just want to make her life as easy as possible.”
For more information on the book, visit www.cruiseinwithmaineclassiccars.com or email Boudreau-Smith at email@example.com.