This headline sounds like hysteria, but the sobering reality is that nearly a third of the population of the USA has NAFLD. This is just one of the many facts presented on this outstanding NASH brochure. I love the simplicity of the Q&A nature of this factoid, and have been speaking with the author, Tony Villiotti.
Tony is a NASH transplant survivor and the founder of the NASH Education Corporation, a Pittsburgh-based non-profit focusing on increasing awareness and providing educational materials for NASH. I’ve been wanting to write about patients living with NASH for quite some time and Tony was generous enough to agree to an interview for a profile piece, the first ever on NASH AWARE.
An All Too Common Story
In many ways, Tony’s story is the epitome of the NASH epidemic. Tony is a lifelong Pennsylvania resident, only venturing away from Pittsburgh for his Accounting degree from Penn State. He passed the CPA exam and had a successful career, retiring as the CFO for a Pittsburgh-based water utility company in 2003. Like so many of his neighbors in the City of Champions, he’s an avid local sports aficionado. He recently celebrated his 40th wedding anniversary and comes from a large Italian family, where “food (and lots of it) was a big part of holidays and daily life.”
In 2005, at the age of 59, he was first diagnosed with NAFLD as a result of blood work that showed elevated AST and ALT enzymes. Tony was considered “at risk” due to his weight and his preexisting diabetes, which is why the tests were ordered. Without his diabetic condition, he may not have been diagnosed until much later.
Even though he received a relatively early NAFLD diagnosis, Tony was not referred to a specialist until nine years later, when his primary care physician first uttered the word that would dramatically alter his life; NASH. Just like so many others, Tony had never heard of the disease until he was told he had it in 2014. This is a woefully familiar tale, as the majority of primary care physicians admit that they have very little knowledge of NAFLD and even less of NASH. Though at least in Tony’s doctor’s case that seems to be improving.
“My primary care physician, at least at that time, did not have a lot of information about either [NAFLD or NASH]. I never heard of NASH until I had it. I talked about that to him recently and he said he is now much more aggressive about testing people for both. “
As NASH often has little or no symptoms until advanced stages, this isn’t really all that surprising. Tony was no different. “I had no symptoms. I was somewhat tired but I chalked that up to aging and being out of shape.”
This is why NASH is known as the “Silent Killer”, and why we should be very worried about the numbers that are being estimated worldwide. I repeat them often here. 80 to 100 million Americans with NAFLD. 15 to 30 million with NASH.
And most without any clue at all they have it.
A Life Changing Diagnosis
During the same appointment where Tony was told he had NASH, his doctor also told him that he suspected it had already advanced to Type 4 and most likely cirrhosis. He referred Tony to a hepatologist for further testing.
It is not uncommon to go from a general fatty liver diagnosis straight to advanced NASH, because the intermediate stages are nigh impossible to detect without aggressive monitoring and usually requires a biopsy, which is not exactly standard procedure for a general practitioner.
Tony underwent an MRI in early 2015 at the direction of his hepatologist, where the cirrhosis suspicions were confirmed. While there is no medical treatment for NASH, if you catch it early enough it is still reversible through lifestyle changes to diet and exercise. With a cirrhosis diagnosis, the damage to the critical organ had been done. While there is some promising very early research into rebooting the liver’s regeneration process to reverse cirrhosis, and it is possible to live with cirrhosis for quite some time before liver failure sets in, the only real long-term outcomes are liver transplant or death.
Tony’s doctor told him of the high possibility that he would need a transplant, but the idea was still a foreign concept to Tony, who couldn’t quite grasp the severity of his condition despite the ominous diagnosis. This is also common for NASH patients, because even with cirrhosis Tony was still mostly asymptomatic. Plus, he resisted because he had read that the anti-rejection drugs needed post-transplant would make his diabetes substantially worse.
Then in 2017, his hepatologist told him some more bad news. He had developed hepatocellular carcinoma, a type of liver cancer, and would definitely need a transplant before the cancer spread too far. NASH does not always lead to cancer, but a growing percentage of patients are getting it as the incidence of NAFLD/NASH continues to grow. It is vital to detect it early, as once it spreads a transplant is no longer an option.
Tony recalls the feeling of being told about the need for a transplant:
“The thought of a transplant greatly affected me. I had never really thought of liver disease as being life-threatening before, but now reality set in and it shook me.”
He brought up his concerns about the anti-rejection medication and his diabetes. His doctor was blunt.
“My doctor informed me that they could treat diabetes, but not death.”
Tony changed his diet with the goal of losing weight, a prerequisite for most liver transplants. Studies have shown that obesity greatly affects the survival rate for liver transplants. He initially tried to simply reduce his volume of food, but then he had a another surprise development when he developed sudden Hepatic Encephalopathy.
My wife returned home to find me disoriented and unable to even recognize her. The first day, I didn’t know what year it was, the names of my kids or grandkids, or pretty much anything. Three days later I regained my senses but the brain fog I had never left.
Much like with my Mom’s situation, this drastically changed Tony’s daily life. For really the first time in his 12 years of living with fatty liver disease, there were real symptoms, and they were metamorphic. Major dietary changes included the elimination of all red meat and severely curtailed protein intake. An exercise regimen was assigned, but it was difficult to manage as the condition left Tony physically exhausted nearly all the time.
Tony’s wife was instrumental in helping him manage the lifestyle changes required to prepare him for a transplant, and he credits her with saving his life. “I call her my angel on Earth.”
Finally, Tony underwent the liver transplant procedure on March 18th, 2018. This is commonly referred to as “day zero” in the transplant world, and marks a “rebirth” of sorts for recipients, who commonly will celebrate their “transplant birthdays”. Here he describes the process and recovery in his own words:
The liver I received was high risk [DF: this is common when the donor has one of many risky lifestyle factors] and had been turned down by another transplant center. After the operation the surgeon told my wife that the liver wasn’t a Cadillac but it was a good Ford or Chevy.
I was home 8 days after the transplant. The first three weeks or so that I was home were the most intensive recovery period. I was very weak and had a hard time getting out of bed myself. My weight was 35 pounds less than the day I went in for the transplant. During that period I received visits 3 times a week from both physical and occupational therapists. I gradually built up my strength and endurance, working with 3-pound weights and walking laps around the house. It was gradual improvement from that point forward.
Now, 7 months removed from the surgery I walk 3.5 miles usually 5 days a week and work out with 8-pound weights. I have been cautious with any exercise affecting my abdomen area because of the concern about developing a hernia but just this week I have started exercises targeting my abdomen. I have been very fortunate and have not had even a single complication. I’ve gained about 20 lbs since my low point which is still 15 less than pre-surgery.
Probably the biggest adjustment during this period has been my wife. She was so used to doing everything for me and driving me places that it’s been a little difficult for her to let loose of the reins. I always have had a positive outlook on life and I believe this helped with the recovery. I expected things to go well and worked hard to make sure they did. Also, followed my doctor’s orders to a “t”.
(for a much more detailed story of Tony’s transplant, read his great blog post “The Road to Transplant“)
As for Tony’s NASH, his new liver has been functioning normally and all of his enzyme tests have been consistently in the healthy range. This means that for the immediate future, Tony has been cured of his fatty liver disease. He has had to start taking insulin shots for his diabetes, but hopes that need will fade as he tapers off of the anti-rejection meds. He has continued to watch his diet and strives to lose more weight to avoid eventually developing fatty liver again.
A Roadmap for the Future
Tony had conquered his personal battle, but was determined to help increase awareness of non-alcoholic liver disease. His wife and he discussed starting a non-profit to do so while he was recuperating from his transplant. He felt that there was good information available on the internet, but it was hard to find and was not comprehensive at laying out the complete picture.
“The major inadequacy was that I never felt like had a full understanding of the road ahead. There were too many surprises. For example, I had no idea that Hepatic Encepthalopathy could be in my future,” Tony said. “I wanted to reach the person I was in 2005 when I was first diagnosed with fatty liver – – someone with no knowledge of this problem. I had nine years between my fatty liver diagnosis and having cirrhosis. With more knowledge I think I could have reversed it. “
With this focus on education and helping other patients know what to expect with NASH he created the NASH Education Corp. Since then he has been diligently trying to get in the door of healthcare organizations, healthcare and healthy living fairs, and even make inroads with businesses’ health wellness programs.
You might think that creating a non-profit from scratch would be daunting for a 72-year-old still recovering from a liver transplant earlier this year, but Tony’s positive outlook and lifelong work ethic gives him the strength to power through.
“I wanted to do my own non-profit because I wanted to have a singular purpose and I am not patient enough to try to convince an organization to pursue my interests. Being 72, I have to live life for today and accomplish things quickly. I’m starting to work on what I call a Fatty Liver Roadmap, that shows what lies ahead for those who get that diagnosis. I envision this roadmap being handed by doctors to every person diagnosed with fatty liver. This lays out what can happen as one progresses down the paths of liver disease.”
What’s next for Tony?
“There is a lot to be done and a lot of doors on which I need to pound.”
You can read more about NASH Education Corp at http://nasheducationcorp.org/