After liver transplant, she spent decades living with hepatitis C

Catherine Coonfield awoke from a three-week coma with her parents at the 33-year-old’s bedside.

You had a liver transplant, they told her.

It was 1987. She remembers having trouble breathing, her neighbor calling 911 and the doctors saying she wouldn’t make it past the weekend without a transplant.

“I really didn’t think I was going to live,” Coonfield said. “I had no confidence.”

She received an anonymous donor’s liver within 24 hours. She spent another three months in the hospital, learning how to walk again. But her ordeal wasn’t over.

Three years later, she tested positive for a newly discovered disease, hepatitis C.

“It was honestly quite terrifying,” Coonfield said. “I had no control, my body was in control of this and there was nothing I could do to change it.”

She would spend the next half of her life in doctor’s offices, managing her new condition. Now 67, the Manatee County retiree shares her story as World Hepatitis Day arrives and Florida finds itself grappling with a rise in hepatitis C.

• • •

World Hepatitis Day is held every July 28 to raise awareness of the condition that inflames the liver. There are several types — hepatitis A, B, C, D and E — but chronic hepatitis C is the leading cause of liver transplants.

The hepatitis C virus is spread through contact with contaminated blood. Decades ago it could be spread through organ transplants and transfusions, according to the Centers for Disease Control and Prevention. Today, it is most commonly transmitted by sharing needles.

Symptoms can include fatigue, bleeding or bruising easily, dark-colored urine, among others.

The disease develops slowly. More than half of those living with hepatitis don’t know they have it, according to the Department of Health and Human Services.

“Many of those people that were infected in the 60s, 70s and 80s, haven’t really had issues until the last decade,” said Dr. Christopher Albers, a hepatologist with Tampa General Medical Group. “It’s a very slow process.”

Some immune systems can defeat hepatitis C. But 70 to 85 percent of those who develop chronic infections could suffer cirrhosis, liver failure or liver cancer, according to the Florida Department of Health.

In the U.S., an estimated 2.4 million people are infected with hepatitis C. There were nearly 20,000 cases reported in Florida in 2019, according to state data.

The state is seeing a rise. There have been 558 cases reported in the first six months of 2021, a 24 percent increase compared to the same time period last year, according to the state.

• • •

Coonfield said she felt lost after learning of her diagnosis.

“There was no internet to pull up, ‘What is hepatitis C? What are my symptoms going to be? What are the risks going to be?,’” she said. “I remember being afraid of what this meant to my new transplanted liver and the more information I got about it, the worse I felt.”

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Her liver problems weren’t diagnosed before her transplant. She received 84 units of blood during surgery and wonders if that’s how she contracted it.

Coonfield had to decide whether to undergo what was then the current treatment: a yearlong regimen of weekly interferon shots. She saw a close friend go through the mental and physical hardships of that treatment, losing their hair and their bones becoming brittle.

Her friend was cured, but “I don’t want to do that,” Coonfield said. She chose to wait for new antiviral medications to become available. She also lived healthier, eating right and exercising.

Some hardships she could not avoid. One day at the salon, she confided her medical condition to her hairdresser. She was looking for someone to talk to about it. Her hairdresser chopped off her hair in shock and told her to leave with a “butchered head of hair,” Coonfield said.

She became cautious, She stopped sharing lunch and drinks with others. She kept her condition a secret. She didn’t want anyone around her to contract it.

Exercise was her outlet. Aerobics classes let her exercise and socialize at a distance. In 1996 she traveled to the winter World Transplant Games in the French Alps to ski for the U.S. team (she needed lessons, though.) On the plane, in the seat next to her, was her future husband Micheal Coonfield, a fellow transplant recipient.

He lived in Maine, while she was in Connecticut. They shared phone calls about their health journeys and met again in Utah for the U.S. transplant games. She swam and he competed in track and field.

“He knew what my life was like,” Catherine Coonfield said. “I didn’t have to worry about whether or not I could tell that person.”

• • •

Her condition started to worsen in her mid 50s. She was fatigued and her fingers ached. Her job was becoming too much, so her doctors suggested she file for disability at age 57.

The couple got married in 1998 and moved to Naples in 2011. Three years later the antivirals were finally available. Three months of medication cost $80,000 she said, but her insurance covered it.

She took one pill a day for three months and was cured of Hepatitis C after more than two decades of living with it. Now married, retired and cured, they live in Lakewood Ranch and have traveled to places like Australia, Europe and the Galapagos Islands.

There are still hardships, however. She received the COVID-19 vaccine, but those with her condition may still be at risk of severe illness if they contract the coronavirus. The couple has decided to take no chances as the delta variant spreads.

“We’re hunkered down again,” she said, “as if we never had our vaccines at all.”

That didn’t change her advice to hepatitis C patients.

“Don’t be your disease,” Coonfield said. “Do as much as you can, live as much as you can and take advantage of the life that you have. Enjoy it.”

World Hepatitis Day: Get tested.

The Florida Department of Health in Pinellas County will offer free testing for hepatitis from 8:30 a.m. to noon Wednesday at these locations. No appointments needed. Call 727-824-6932 for more information.

• St. Petersburg Health Department, 205 Dr. Martin Luther King Jr. St. N.
• Pinellas Park Health Department, 6350 76th Ave. N

Metro Inclusive Health also offers free hepatitis and HIV testing by appointment. Call 727-321-3854 to schedule an appointment. Clinics are located in Clearwater, St. Petersburg, Tampa and New Port Richey.