Layhees Taking Challenges Head On

CANTON - Dean A. Layhee uses a feeding tube to eat, but that doesn't stop him from going to restaurants or celebrating his birthday with a bottle of beer.

The 45-year-old Canton man and his wife, Karen M. Layhee, feel they have a lot to celebrate these days, despite the many challenges they've faced during their 20 years of marriage.

Mr. Layhee received a double organ transplant Aug. 18, 2009 and has passed the one-year mark without rejecting his new kidney and pancreas.

"The doctors have been amazed by his recovery," Mrs. Layhee said. "He's had some other health setbacks, but has never shown signs of rejection."

Mr. Layhee underwent the a nine-hour surgery at Fletcher Allen Medical Center, Burlington, Vt. after being placed on the National Registry to receive donated organs. After two false alarms, a donor was found who could provide both a kidney and a pancreas.

"All we know about the donor is that it was a young person who died tragically. The donor's organs also saved four other lives," Mrs. Layhee said. "We'd like to meet the donor's family someday."

Diagnosed with diabetes at age 12, Mr. Layhee's kidneys were only functioning at about 18 percent prior to the surgery. His pancreas had virtually stopped working.

Before the transplant, Mrs. Layhee would sometimes come home from work to find her husband in a semi-conscious or unconscious condition because his blood sugar level had dropped so low.

"There were times when I was calling 911 two or three times a week," Mrs. Layhee recalled.

Sometimes they ended up at the hospital, while other times rescue crews stabilized him at home.

As a result of the successful organ transplant, Mr. Layhee is now considered cured of his diabetes, Mrs. Layhee said.

Mr. Layhee said he's grateful to be rid of his insulin shots and frequent trips to the hospital. Getting a full night's sleep is another welcome bonus, the couple said.

However, Mr. Layhee also suffers from Huntington's Disease, a genetic neuro-degenerative disorder that has no cure and usually becomes noticeable in middle age. He was diagnosed in August 1997 at age 32.

The progressive disease runs in Mr. Layhee's family.

His twin brother, Dale J. Layhee, Felts Mills, also has the disease and their father, John "Jack" Layhee died of the illness in January 1997. The twins are also the sons of Nancy C. Layhee, Canton.

The earliest symptoms include lack of coordination and an unsteady gait. As the disease advances, jerky body movements- known as chorea- become more apparent. Mental decline is also common.

Mr. Layhee was working as the administrator of Canton United Helpers Nursing Home when he was diagnosed with Huntington's. Three years later, he resigned in 2000 and was placed on permanent medical disability at age 35.

Although there is no cure for the disease, Mr. Layhee takes medicine to help control his movements and uses a walker.

He has difficulty talking, but participates in family activities like going to the movies, joining people at restaurants and swimming in his backyard pool.

He enjoys watching TV game shows like Jeopardy and Wheel of Fortune and the comedy Gilmore Girls.

He said visits from family members, friends and former co-workers help keep his spirits up. He tries not to dwell on his medical condition.

"I think about other things," Mr. Layhee said during an interview at his village home, 8 Stiles Ave.

Mrs. Layhee said her husband is among the first people with Huntington's Disease to undergo a successful double organ transplant, according to what she was told by his transplant team.

"His case may end up in the medical journals," she said.

Because the disease causes him to silently aspirate, a feeding tube was inserted into his abdomen. Four times a day, a syringe is used to pump liquid nourishment into his feeding tube.

Earlier this month, Mr. Layhee got the OK from his doctor to take a few tastes of beer on his 45th birthday. Some of the beverage was also inserted into his feeding tube.

It's been a rocky road for the Layhees who had to restructure their daily life to handle Mr. Layhee's illness, but they don't sit around feeling sorry for themselves.

Early in their marriage the couple agreed not to have children because their genetic history includes diabetes in both their families and Huntington's on Mr. Layhee's side.

The couple celebrated their 20th wedding anniversary Aug. 25, and they're planning a trip to Disney World, Florida, next fall.

They credit family members and friends for their support and help, including Mrs. Layhee's sisters, Kimberly A. Trombley and Karolyn P. Trombley and their mother, Patricia A. Trombley, all of Canton.

Mrs. Layhee said she refuses to keep her husband isolated and brings him to restaurants even though he can't eat the food.

She's hoping their open attitude will raise public awareness about Huntington's Disease and other neurological conditions that can impact the way people move and talk.

"We have to stay positive. This is our life," Mrs. Layhee said. "We just take one day at a time. You have to have that attitude to overcome the obstacles that life brings."