Health: Transplant recipient wants to change lives

NILES — Fallon Coody knows what it’s like to wait for news that a donor has been found for a life-saving organ transplant. Growing up, she spent four of her first eight years in the hospital and underwent two liver transplants, with the first one failing after a short time.

Now 33, Coody talks about the subject whenever she can.

The need for organ donors is always there, said Tim Makinen, communications director for Gift of Life Michigan. The number of people on the waiting list for a life-saving transplant in Michigan grew slightly over the last year. “Put another way, names are added to the waiting list faster than they come off because of organ transplants,” he said.

Michigan’s waiting list currently numbers more than 3,600 people, of which 34 are age 17 or younger, including 14 who are 5 years old or younger. In Indiana, more than 1,400 men, women and children are awaiting a transplant.

Makinen said that 898 people in Michigan received an organ donation in 2015, with 681 of the organs coming from deceased donors. At the same time, 174 people died last year while waiting for a transplant and 191 became too sick to get one.

Nationally, from 1988 to 1992, the number of pediatric liver transplants (the recipient age 17 or younger) averaged 474 annually. In the past five years, the average annual number has climbed to 541.

Coody’s journey

Coody was the second child to get a liver transplant in the state of Georgia and then the fourth to get a liver transplant when the first transplant failed after three weeks. “She was 9 months old when the problems started and 7 and 8 years old when she got the transplants,” said her mother, Luann Smith, of Niles. Coody was eventually diagnosed with a rare liver disorder called tyrosinemia

“I didn’t believe it at first,” Smith said. “At first I thought they’d come up with something that could fix it.”

The family was living in Georgia at the time and they decided to go to Emory Hospital, in Atlanta, when local doctors couldn’t figure out what was wrong. Years of tests and hospital stays followed, leading up to her first liver transplant when she was 7.

Coody said she really didn’t know what normal was growing up. Her childhood consisted of long stays in the hospital, dealing with liver cancer which was the result of one of the drugs she was given, going blind briefly because of another drug and then facing not one but two liver transplants.

“I didn’t think, ‘Why me?’ What I was experiencing was normal to me,” she said. “My passion is to help those going through similar experiences. I’ve taken it upon myself to be in contact with all organ donation coordinators. If anybody in this area needs advice, I will talk to them.”

For her part, Smith said it was a roller-coaster ride for her and the rest of the family. “I planned her funeral four times. I was told she wouldn’t live,” she said. “We said we had to keep fighting even though they said there was no hope.”

Fortunately for Coody and her family, her second transplant “took” and she’s passed the 25-year mark. “It’s mine at this point,” Coody said in reference to her liver. “I had a suitcase full of medications at one time, now I take just one pill.”

Moving forward

Coody will graduate from Indiana University at South Bend next May and volunteers at the Center for Hospice in South Bend. “I want to be a medical health care social worker,” she said. “I can relate to sick kids. I want to move back down to Georgia and work there. I’m in touch with others who are getting or have gotten transplants to encourage them.”

Coody is also collaborating on a book with one of her former nurses in Georgia, Katie Hart Smith. “I want to get my story out there and make the issue of organ donation more known.”

Coody’s story includes a love of horses. She has four horses lodged both in Berrien Springs and on her mother’s farm south of Niles. She’d like to enter one of her horses in area parades as a way of helping to raise awareness about organ donation.

Nationwide, the number of people waiting for a transplant is over 130,000. Makinen said that the greatest organ transplant need both in Michigan and around the country is for kidneys because of chronic conditions such as hypertension and diabetes.

Become a donor

Anyone can join the Michigan Organ Donor Registry or the Donate Life Indiana registry, regardless of age or health history, by going online to the Michigan site at www.giftoflifemichigan.org or the Indiana site, www.donatelifeindiana.org.