Stan I.

Hepatitis C

My story begins about 50 years ago when I returned home from Vietnam in 1967. This story doesn’t start off with a bang but rather a small, inconspicuous diagnosis in the beginning of 1968 when my doctors informed me I had non-A non-B hepatitis; while I did have some symptoms (yellowing of my skin, feeling fatigued), my doctors did not seem concerned so my life went on without giving this new diagnosis a second thought.

Fast forward about 25 years to 1992, when a routine blood test at an annual physical showed elevated liver enzyme tests. It was then I received an official diagnosis of Hepatitis C. Following this new diagnosis, I was sent to the hospital to receive a biopsy. I was informed I had moderate cirrhosis of the liver.

For nearly 25 years I had lived with this disease, never really having a symptom, not thinking twice about it, and now here I was, being told I had extensive scarring of my liver and presented with the possibility of needing a transplant. I began to live as healthy as I possibly could: eating a healthy diet, eliminating alcohol, and carefully monitoring whatever I put in my body. I was being cared for by a doctor in my home state of Rhode Island and attempted two rounds of treatment to try to eliminate the Hepatitis C.

At that time, and until about 2011, the only medications available to treat this virus were interferon based treatments. Interferon, for those of you who don’t know, was a very difficult drug to tolerate, had to be injected, caused chemo-like side effects, and only had about a 40-50% chance of working. The first time I tried interferon and ribavirin, the virus was untouched by the treatment but I experienced awful side-effects. I needed to get rid of the virus in order to stop the continuous damage that was happening in my liver.

In a desperate attempt, my doctor and I decided to try the medications a second time, at a higher dose. I thought the first round of treatment was unbearable; this time, my body nearly shut down due to the toxicity of the medication. While seeking treatment in Rhode Island, I was also being followed by specialists in Boston. I originally met my doctor, Dr. Dan Pratt, at New England Medical Center and followed him to Massachusetts General Hospital when he transferred there; it was under his care that I began the long journey towards liver transplantation.

It is hard to easily sum up the years and intensive care which unfolded following my official diagnosis of Hepatitis C. During this time, I experienced so many negative side effects of liver failure, was frequently in the hospital, and had more tests, procedures, and transfusions than I can count. Your liver is responsible for so many jobs: when it starts failing at some of those jobs, every part of your body is impacted. The blood that should have been flowing through my liver was greatly reduced because of the cirrhosis, or scarring, and began to back up throughout the veins in my esophagus, resulting in something called esophageal varices. Essentially, the veins in the esophagus become too overloaded with blood, balloon out, and, if they become too overfull, run the risk of bursting resulting in heavy, internal bleeding. I regularly had to have endoscopies and blood transfusions.

Another side effect of cirrhosis is something called hepatic encephalopathy, or HE for short. HE occurs when toxins, like ammonia, are not correctly flushed out of the blood because the liver is not filtering properly; all of those toxins then back-up and begin to poison the brain, leading to personality or mood changes, mental confusion (similar to dementia), increasing fatigue, and possible coma.

I, thankfully, only had one severe episode: I was trying to put my underwear on my head, believing it was a hat. My wife called an ambulance, but when they arrive to bring me to the hospital, I was determined to convince them I was fine.

Even though I had all of these symptoms, my MELD score (Model for End-stage Liver Disease) was only 17. The MELD score determines the organization of the transplant list. It is based on blood work and assesses the severity of chronic liver disease. Scores range from 7 to 40 (40 being very sick); in New England, the average score at the time of transplant is a 33. I had a long way to go.

In 2013, I received another diagnosis. This time: liver cancer. I was shocked, scared, worried, and saddened to hear that my cirrhosis had progressed to liver cancer (about 15% of people who have cirrhosis will go on to develop liver cancer). While I was feeling my lowest, my doctors tried to assure me this was a good thing. How could cancer be a good thing?! That is when I learned about exception points: essentially the MELD score reflects your chance of death within the next 3-months. With liver cancer, that chance goes up (a bad thing) which means my score would go up (a good thing) and would continue to go up until I received my new liver. There was also a risk of the cancer progressing too much, making me unable to receive a liver transplant.

So, my score jumped up quickly, meaning my wait would be shorter. Now, looking back, I agree with my doctors—cancer saved my life. Something else happened in 2013: a new medication, called Sovaldi, was released.

Amazingly, after only being on this medication for a few weeks, my virus was undetectable. I completed the treatment and, after about 45 years of fighting this virus, I was cured. It is so amazing to see how research has improved the care provided to people with Hepatitis C. I never thought I would see a cure for Hepatitis C in my lifetime.

While I waited for a liver, I underwent a procedure called an ablation which essentially burned the tumors off to keep the cancer from spreading. I regularly visited the doctor throughout 2013 and into 2014. Finally, in August of 2014, I got a call that there was a liver available; while I was not on the top of the list and was receiving this call much sooner than I thought, I was the best candidate for the liver that had become available.

My wife and I drove to the hospital and I received my liver transplant. I wish I could say that’s the end of this story. But, this gift I was given, this new liver, was rejected, and I immediately entered liver failure.

By some miracle, another usable liver arrived in time and I was somehow strong enough to undergo a second surgery. The new liver, the second liver, worked. It took me a while to get back on my feet and get healthy again.

I am still a work in progress but I am here. I am here thanks to the advances in medicine. I am here thanks to my amazing doctors. I am here thanks to the continual support and love of my beautiful wife. She kept me on track every step of the way. And, because I’m here, I got to meet my grandkids; both of my amazing grandchildren were born after my transplant. One is a 1½ years old and one is 4 months old. I am so grateful to be here, to know them, and to be alive. There is no way to begin to say thank you.