Kathy Fiandaca, of Midlothian, was a single mom with an infant when she learned she needed a new liver.
The physician who delivered the news — Dr. Daniel Ganger — assured Fiandaca that not only would she get a new liver but she’d be able to watch her daughter grow to adulthood.
More than three decades later, Ganger’s assurances proved to be true, and he’s still keeping an eye on her health and the liver she had transplanted.
“The funny thing is I wasn’t really sick,” Fiandaca said, recalling when she first learned what was going on. “I started itching really bad, and that’s how we found it. Back when I was diagnosed with it, that is how they found it. …. I was one of the youngest.”
“It” turned out to be primary biliary cirrhosis and autoimmune hepatitis. “They say I was born with it,” she said. “None of my six siblings have it, and my daughter doesn’t have it.”
Her first gastroenterologist sent her to Mayo Clinic to get tested for hepatitis C. “I flew to Mayo, and they still couldn’t find out what was wrong. He sent me to Dr. Ganger who did one blood test, and that was how they knew what was wrong.”
The chronic disease slowly destroys the bile ducts in the liver. Bile, which is made in the liver, helps with digestion and absorption of some vitamins, according to Mayo Clinic.
“There’s somebody upstairs looking after me. I’ve never gone back. I’ve never had an issue,” said Fiandaca, who is now 58. “Somebody is watching over me. I’m blessed. That’s all I can say.”
For many years, that “somebody” has been Ganger, 71, a transplant hepatologist who trained and worked at Northwestern Memorial Hospital in Chicago from 1984 until 1991 before moving to Rush University Medical Center in Chicago. He met Fiandaca, then 28 in 1992.
“She was a very young person,” he said “and had a very young daughter at the time. I kept track of her.” He added that she was “really young” for a transplant.
The two reconnected in 2008 when Ganger came back to Northwestern to practice.
He said having two overlapping conditions is not unusual but it can have devastating consequences.
“It leads to a more rapid destruction of the liver. Often the treatment is not very successful,” he explained. “The younger you are, your immune system tends to be stronger, so it’s more aggressive with your body.”
Liver disease has a stigma of always being related to alcohol, which can lead to delayed treatment as patients are afraid to tell their families, but “that’s not true at all – that’s part of education,” Ganger said.
Fiandaca said when she first received her diagnosis, she didn’t accept it. “At first I thought I was going to heal,” she said. “I wouldn’t accept that there was a chance I wouldn’t be around.”
But as the disease progressed, she was in the hospital every month.
“They told me it would take up to nine years for (my liver) to fail, but I got pretty sick. I was probably eight years into it. At that time they didn’t think I’d pull through at all, but I did. I had the whole staff concerned about me because I was young.”
She said her young daughter, Ashley, inspired her to persevere.
“My daughter was always my fight. I wanted to be sure I could be there for her because I’m a single mom.”
Her daughter, who was about 9 months old when she got the diagnosis, was 8 at the time of Fiandaca’s liver transplant. One of the hardest things about her disease “was telling my daughter that I might not be around. I had to make the decision (about) what was going to happen to her,” she shared.
Luckily, Fiandaca has not only survived for the past three decades but has gone on to see her daughter help others facing medical issues. Ashley Barretto is a registered nurse working as an oncology nurse clinician at Northwestern Medicine Cancer Center in Warrenville.
“Seeing me sick and everything, because we lived with my parents, she went through my dad experiencing cancer and my mom. …. I couldn’t be more proud of her,” Fiandaca said.
Ganger is also pleased about how things turned out.
“When she was transplanted, that young daughter was 8 years old. She obviously saw her mom going through a lot. To me that is so wonderful that Kathy’s daughter is a caregiver,” he said. “I’m sure she’s awesome — she’s working with us!” he added with a laugh.
Fiandaca cherishes her relationship with Ganger. “He can’t retire. I’ll never find a physician who knows me so well. He knows my daughter. He knows everything about me.”
“When I made my 30th year, I sent him a message thanking him for doing this ride with me,” she added. “He just replied that he was so happy that we’ve been together. He even said he loved me. …. I work for a doctor and I don’t even get that friendly with him. (Ganger) is like a family member to me. That’s how I think of him.”
Ganger said Fiandaca isn’t his only longest patient; he has one patient who’s been around for 47 years. “Being one of the oldest hepatologists in Chicago, I have a lot of patients long term,” he explained. “I tell patients ‘The liver doesn’t have a battery — it will not run out because of time.’ It will run out because of other things but not time.”
He considers Fiandaca as more than just a patient. “I think, like many of my patients that I carry on with for many years, they become like family,” he said. “You get to know people you met earlier, see them getting married, having kids, having a normal life. The gains and losses are knowing people for a long time.
“It is not common in modern medicine to have a long-term relationship with a patient. That is one of my difficulties at my stage in my career is that I’m seeing what will happen” when he retires, he added. “I am hoping my colleagues will take good care of my patients.”
Ganger’s current interest is heart and liver transplants being done at the same time. He also hopes another generation of medications to combat transplant rejection will be developed.
“I don’t think that will happen in my lifetime,” he said. “I think my colleagues will be able to use medications with less side effects so transplants will be safe in the future even more than today, so that’s good.”
Fiandaca has some advice for others facing a serious health issue: Never give up.
“They have to put it in God’s hands, and they have to do their research,” she said. “You always want to get another opinion. If you’re not happy (with that), get another one. You have to get yourself comfortable with a physician. You have to put your health in their hands.”
Melinda Moore is a freelance reporter for the Daily Southtown.
