which is irreversible scarring of the liver, almost always leads to a
transplant—or worse.
“People are surprised to learn that non-alcoholic liver disease
is a more common cause of liver cirrhosis than alcohol abuse.
Also, they are surprised to learn there are usually no symptoms,”
says Villiotti. “The day I was diagnosed with cirrhosis was the first
day I knew that NAFLD could lead to cirrhosis. I had NAFLD for
nine years before I was diagnosed with cirrhosis.”
Dr. Cristina Strahotin, a transplant hepatologist with
Allegheny Health Network who treated Villiotti after his cirrhosis
diagnosis, says she was not surprised to learn that Villiotti was
not told how far the disease could progress.
“This is a disease that starts slowly and that can progress
over 30 years or longer,” Dr. Strahotin says. “It develops slowly,
without symptoms. All you need is excessive body weight.
Patients may present with high blood pressure or diabetes, and
they’re simply told to exercise and to lose weight. They’re rarely
told how serious this condition could become.”
The frustrating part, Dr. Strahotin says, is that in its early
stages, fatty liver disease can be reversed through diet and
lifestyle changes. The liver is the only organ in the body that has
the capacity to regenerate.
“If you’re in stage two or even stage three of this disease, it’s
still reversible through diet and exercise,” she explains. “Once you
develop cirrhosis, the condition is no longer reversible. At that
stage, the goal is to preserve the liver in whatever state it is in for
as long as we can.”
For Villiotti, that meant MRIs every six months to monitor
his progress. And then, on March 17, 2017, he received
devastating news: he had liver cancer. The only cure would be a
liver transplant. He was added to the transplant list, and in the
meantime went through several rounds of radiation to ensure
that the tumor wouldn’t metastasize beyond the liver while
he waited.
“That emotion was fear and uncertainty and it was the first
time I really faced my own mortality,” he says. “I was either going
to get a transplant or I was going to die.”
Over the course of the following year, Villiotti would
experience a number of health emergencies—all related to his
liver’s inability to properly function—that would land him in the
hospital. He had bouts of hepatic encephalopathy (HE), which
caused toxins to filter into his bloodstream and ultimately to his
brain, causing extreme confusion; a bladder cancer scare; ascites,
which causes fluid to build up in the stomach area; and shortness
of breath from fluid building up in his lungs.
“There are four main complications that can arise from this
disease, and Tony experienced every one,” says Dr. Strahotin.
On March 17, 2018—a year to the day from his diagnosis
of liver cancer—Villiotti received a call that a donor liver was
available. On March 18, he was wheeled into the operating room;
six hours later, he was wheeled out with a new, functioning liver.
Villiotti was able to return home on March 26, 2018, following
his recovery in intensive care. More than a year later, Villiotti,
now 72, is keeping his weight in check, exercising daily and eating
healthy foods.
“This is the best I have felt in at least 15 years,” he says. “I have
plenty of energy and feel great.”
Now, Villiotti is on a mission to help others like him. Hoping
to increase awareness of NAFLD, NASH and cirrhosis, he
launched a nonprofit organization called NASH kNOWledge in
September 2018.
“My experience with non-alcoholic fatty liver disease
motivated me to start the nonprofit,” he says. “I believed that
if I had known more about NAFLD I could have reversed my
condition and it never would have advanced to the transplant
stage. My successful transplant left me with the desire to ‘pay it
forward’ and try to prevent others from repeating my experience.”
The organization’s website, www.nash-now.org, offers a gold
mine of information and resources about all stages of liver
disease, as well as Tony’s personal blog and articles about the
latest research.
“There are still plenty of information voids that need to be
addressed,” says Villiotti. “We hope to spend time developing
information for parents and school nurses on childhood NAFLD
and NASH, which is a growing problem. We also hope to provide
more nutrition information on our website. Our overarching goal
is to make more inroads, especially in Pittsburgh, on increasing
awareness.”
Part of Villiotti’s efforts include a documentary, “Silent
Epidemic: The Liver Disease NASH,” which was released to the
public at a special screening on June 12, International NASH
Day, at the Carnegie Science Center.
“We decided to do the film in order to make the general public
more aware of NAFLD and NASH,” he says. “We are hoping
that a person who otherwise would not be concerned about liver
health will see the documentary and be alerted about the ticking
time bomb that is NASH. We saw it as another way to increase
public awareness.”
Villiotti and his family worked with Ron Bruno from The
Videohouse in Green Tree to finish the project. Through Bruno,
award-winning television veteran Susan Brozek Scott was hired
as the producer and writer. The film features reenactments and
interviews with Villiotti, his wife Betsy and his treatment team.
He says the response to the project has been positive, and they’re
now looking for ways to share it with more people.
“I hope others will learn how important good liver health is,
and how liver disease can sneak up on you,” he says. “The tagline
we use is ‘Awareness + Action = Control.’ If a person is aware
of the dangers and increasing incidence of non-alcoholic liver
disease, he or she can take steps to avoid it. If a person has one
of the risk factors—Type 2 diabetes and obesity are major risk
factors—they need to talk with their doctors and be sure to
monitor their liver health.” ■
For more information about the documentary or NASH kNOWledge, visit www.nash-now.org.
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