UNC Health Talk

Cindy Korff: A Caregiver Gives Thanks

Media contact: Stephanie Mahin (919) 951-4758, smahin@unch.unc.edu

Wednesday, November 21, 2012

Written by Elizabeth Swaringen for UNC Health Care

Chapel Hill, N.C. – Cindy Korff’s list of Thanksgiving blessings is huge.

“First, I thank the medical team — surgeons, nurses, coordinators, everyone — at UNC Hospitals that saved my son’s life,” said Cindy, 48, of Spokane, Wash., whose youngest son, U.S. Marines Cpl. Devon Raymond, received a liver transplant that cured his Wilson’s disease — the same disease that claimed her older son’s life 18 months earlier.

“Second, I thank the fellow caregivers I met during my four months in Chapel Hill and specifically at SECU Family House who are now friends for life,” said the never-met-a-stranger talker and excellent listener.

“Third, I thank the Wounded Warrior Battalion at Camp Lejeune for their care of Devon once he was released back to base and I flew home,” said Cindy. “I know he’s in good hands.”

And the list continues: to her husband, Jonathan, and their daughter Samantha, 15, who held down the home front during her four-month absence and her employer, Providence Sacred Heart Medical Center and her fellow employees, who held her job as a sterile process technician of surgical equipment.

Cindy arrived in Chapel Hill on May 25 after Devon was transferred to UNC Hospitals from Cherry Point where he had become ill over Mother’s Day weekend. Tests indicated a liver disorder, and Wilson’s disease was confirmed at UNC.

The inherited recessive genetic disorder causes copper overload in the liver and results in neurological impairment and liver failure. It affects one to four persons per 100,000 people and is fatal if left untreated. In order to inherit it, both of the parents of an individual must carry an affected gene.

By the time Devon’s condition was diagnosed, his only option for treatment was a liver transplant. Despite anxious weeks when an infection ravaged his body as his Wilson’s disease worsened, Devon received a new liver on June 27.

The transplant cured Devon of Wilson’s disease, and his journey from diagnosis to treatment also brought an elusive confirmation: Wilson’s disease had claimed the life of Cindy’s oldest son, Michael, who died on Jan. 14, 2011, at age 23.

“Their cases are night and day different, but when Devon was diagnosed, we realized there were too many similarities in their symptoms,” Cindy said. “Michael became ill in November of 2010 and was gone two months later. With Devon’s diagnosis all I could think was ‘I can’t do this twice’.”

But Cindy has no regrets about putting her own life on hold for four months to help Devon heal.

“It’s what you do as a parent,” she said. “Even if he’s 22 years old and an active-duty Marine who has had one tour in Afghanistan, he’s still my baby. I know he appreciates my being here for him, but I don’t fully expect him to appreciate it until he has children of his own.”

While in Chapel Hill, Cindy stayed at SECU Family House, the 40-bedroom hospital hospitality house minutes from UNC Hospitals. Family House provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers. Devon joined her there for three months post-transplant until he was released to return to Camp Lejeune on Sept. 28.

At Family House Cindy connected with other patients and their family member caregivers and she gave support as good as she got.

“As caregivers we get tired, cranky and upset, too, and we could sit down and just talk it out,” she said. “And sometimes we just talked about stupid, silly stuff to get our minds off the heavy things we were dealing with. We could goof around or tease and forget our troubles for the day. Family House is a safe place to do that.

“It’s a helpless feeling when a loved one is so sick. And sometimes, although it’s not intentional, we caregivers are the ones who bear the brunt of our loved one’s anger, frustration and fear. There is comfort in working through that pain with others who are on a similar path. I know I am a much better person for having met these people who are now friends for life.”

Cindy also became friends for life with patients who didn’t always have family with them. She helped shop for groceries and new shoes, and she was present to cheer when radiation patients rang the gong that symbolized the end of their treatment—and their release from Family House and their return home. Social media and old-fashioned phone calls keep them close.

Not one to be idle, early on Cindy established a daily routine that not only helped her, but fellow residents at Family House.

“I’m an early riser so I’d get the coffee going in the kitchen and unload the dishwashers—there are four—and put away the clean dishes and utensils,” Cindy said. “Another resident said to me, ‘this place runs best because people like you know where things are.’ I just try to model the behavior I want to see: be courteous to others, pick up after yourself and don’t take more food than you need.”

Devon won’t be home for Thanksgiving dinner and Michael’s absence at the table and in her life will always leave a hole in Cindy’s heart. Still, she knows she’s blessed.

“You have to look for the positives, and they are always there,” she said. “And just worry about today, today. Tomorrow will take care of itself.”