Faces of Liver Disease
Sharing your experience can provide hope and comfort to others in the liver community.
“When I first signed up to run the marathon with the American Liver Foundation Run for Research team it was mostly about running. In exchange for raising money I got the opportunity to run the Boston Marathon. It seemed like a pretty good deal. Little did I know that after my first season with the team I would go from Nick Giordano marathon runner to Nick Giordano liver patient.”
Nick began his involvement with the American Liver Foundation a few years ago when he ran the Boston Marathon with his then girlfriend Deb. Deb had been a member of the team for a couple of years and since Nick’s grandfather had died of liver disease he thought that teaming up with ALF would be a great way to honor his grandfather’s memory. On top of that, Nick had met Deb through running, so he decided to surprise her at the finish line by asking her to marry him!
Shortly after the marathon and still on a high from the excitement of his finish and the proposal, Nick found himself sitting in his doctor’s office. During a routine physical his primary care physician had discovered that his liver enzymes were elevated. He was referred to liver specialist Dr. Michael Curry who performed an ultrasound and found a hemanginoma on Nick’s liver.
Nick was scared. Remembering his grandfather’s battle with liver disease, he naturally started to fear the worst. Over the next few months Dr. Curry ran several tests and eventually Nick’s whole ordeal concluded with a liver biopsy. Thankfully the results of the biopsy test came back normal—Nick did not have liver cancer, but he was diagnosed with Non Alcoholic Fatty Liver Disease.
Nonalcoholic fatty liver disease (NAFLD) is the build up of extra fat in liver cells that is not caused by alcohol. It is normal for the liver to contain some fat. However, if more than 5% - 10% percent of the liver’s weight is fat, then it is called a fatty liver (steatosis).
NAFLD tends to develop in people who are overweight or obese or have diabetes, high cholesterol or high triglycerides. Rapid weight loss and poor eating habits also may lead to NAFLD.
However, some people develop NAFLD even if they do not have any risk factors. Nick is a perfect example. He was healthy, only a few pounds overweight, and exercised regularly. Given that NAFLD often has no symptoms, his diagnosis came as a shock.
Following his doctor’s advice, Nick made an effort to shed his extra weight, make all helpful dietary changes and avoid even casual alcohol consumption. He returned to Dr. Curry’s office on a regular schedule to check his liver enzymes. In a few months they had decreased significantly. Nick is effectively managing his NAFLD and his continued good health reflects this.
Nick tell us in his own words about the impact of his diagnosis on his life and his relationship with ALF:
“They say everyone has a moment in their life where they begin to view their lives differently and I believe that being diagnosed with liver disease was mine. Several years ago while reading Lance Armstrong’s book, It’s not about the bike! He made reference to a statement that he would say to himself on a daily basis while battling cancer and that statement stuck with me. “Get up….keep moving…..I’m alive!” Now by no means do I intend to compare myself to someone with cancer, but my hope is that I can take my experience with liver disease and help educate others about it. Because I can get up….I can keep moving….I’m alive. I’m alive and able to make a difference.
Throughout the last few years I have heard countless stories from other liver patients. Some have been inspiring and others have been heartbreaking. This year during the annual Liver Walk I was working at a table recruiting patients for our Patient Match program when I met a woman who was the aunt of a little girl who had a liver transplant at the age of 1. She approached me with tears in her eyes, hugged me and thanked me for my efforts.
Moments later she returned to where I was standing holding in her arms this beautiful healthy little girl. I was instantly moved by this family and asked them to please sign up for the program and please share their story.
Although hearing some of these stories can have a dramatic effect on you, nothing affects you more than when you take part in the Patient Match Program. When I joined the marathon team I was matched up with a little girl named Pearl who is suffering from biliary atresia. Pearl has put a face to a cause that I have become so passionate about. If you had the opportunity to meet Pearl, you might think that she is living the life of a typical 8 year old girl. Unfortunately her life is far from it. Her life consists of a parade of doctor appointments and constant fear and concern from her parents of what her future holds. Meeting and becoming friends with Pearl has changed my life. This past April at the marathon Pearl and her family came to mile 17 wearing “Go Nick” T-shirts and later met me back at the team hotel to congratulate me on my finish. It was at that point that she presented me with a T-shirt of my very own that said ‘Team Pearl” with a little note saying how she loved me and wanted to know if I would run for her again.
Not only will I run for Pearl again this year but I will continue to advocate for the American Liver Foundation and remind people why their efforts are so badly needed and why their stories need to be told. This year I am looking forward to serving as the Vice Chair of the 2010 Run for Research and excited about having the opportunity to lead the team in 2011.
To be honest, at times I still feel funny telling people I have liver disease. I feel fine, I look normal and chances are that if I didn’t tell you I had liver disease, you would never know. There are so many people suffering from liver disease who are far worse off than I am. So the fact that I am given the platform to act on their behalf is something I take very seriously. Our marathon team is made up of an amazing group of individuals with their own connection to liver disease and a willingness to share their stories.
As the great Green Bay Packer’s Coach Vince Lombardi once said ‘The achievements of an organization are the results of the combined effort of each individual’. Now is the time for all of us to come together as one and share our efforts and our stories to help make a difference!”