Ogdensburg woman, 39, awaiting liver transplant

OGDENSBURG — Sherry L. Epprecht Bouchey, 1307 Knox St., formerly of Morristown, is playing the waiting game.

Diagnosed with stage three primary biliary cirrhosis in 2004, the 39-year-old mother of two needs a liver transplant.

"They (doctors) think I've had it since 2000," Mrs. Bouchey said of the debilitating disease in which the bile ducts in the liver are slowly destroyed, according to www.mayoclinic.com. "In October of 2009, things got worse — stage four."

Mrs. Bouchey was placed on the liver transplant list at Strong Memorial Hospital, Rochester, in March.

She said her days consist of constant itchiness and restlessness, two common symptoms of the disease. She was placed on disability in January and no longer can work her job as a deli clerk at Price Chopper. She has lost 80 pounds since October and developed neuropathy in her hands and feet, caused by the damage to her liver.

"As my liver deteriorates, my nerves stop working. I take medication for that," said the diabetic, who said medications come "every two or three hours" at this point. "My day is scheduled around my medications. I'm beat by 7 p.m.," she said.

For now, Mrs. Bouchey said, it's just "sit and wait."

Doctors use a "model for end-stage liver disease score" to rate patients on the transplant list. A score of 16 gets you on the list; Mrs. Bouchey's score recently hit a plateau at 23.

The score represents how urgently a person needs a transplant to survive. For adults, the score ranges from 6 to 40, with higher numbers indicating a more urgent need for a transplant.

Mrs. Bouchey said the heroes in her home are her husband, Marc A., an Ogdensburg native, and her son Spencer, 11. Her other son, Daniel, 14, lives in Tennessee with his father.

"I couldn't have asked for a better group of guys," she said. "My husband has a sixth sense."

Mr. Bouchey, who works at Price Chopper as the seafood manager, calls her from work to remind her to check her glucose level.

"He'll call and I'll be napping on the couch. He'll say, 'Check your sugar,' and it will be in the 40s. Really low. He's funny like that," she said.

Funny, maybe, but Mr. Bouchey is passionate about the struggle his wife and family face. Displaying a red "organ donor" heart on his driver's license, he made a plea for those, like Mrs. Bouchey, who could greatly benefit from a donor.

"It's as easy as checking a box," he said, flipping his license over to point out where he already has done so. "People don't realize how easy it is."

As for her son, Mrs. Bouchey said, "He's old enough to understand."

Spencer, she said, is taking his bigger family role in stride.

"He mows the lawn. He helps me with shopping. Pretty soon, he's going to have to help me drive, because that is starting to make my hands hurt," she said, noting that it will be a few years before Spencer gets behind the wheel.

The disease also has affected another member of Mrs. Bouchey's family. Her identical twin sister, Terry E. Epprecht Crossman, recently was diagnosed with stage one primary biliary cirrhosis.

"I'm kind of paving the way" for her, Mrs. Bouchey said.

Helping to pave the way for Mrs. Bouchey, she said, are co-workers at Price Chopper, Carol Edwards and Katie Harper, who are organizing a benefit jamboree starting at 1 p.m. Sept. 18 at AmVets in the Ogdensburg Mall. The cost for adults is $3, or $5 for a couple, with proceeds going toward helping with medical expenses not covered by insurance.

Activities planned for the jamboree include a Chinese auction, a 50/50 drawing, lots of food, live music and other entertainment, including karaoke.

A motorcycle poker run is being organized by the owners of Duff's Tavern for Sept. 11, according to Mrs. Bouchey.

"I appreciate everything that everyone is doing for me and my family," she said.