Early Liver Transplant Recipient Shares His Story
In 1990, after living with cirrhosis for years, Charlie Scott was introduced to Dr. Thomas Starzl, the first person to perform liver transplantation in humans. When Dr. Starzl told him about this risky new procedure, Charlie figured he had nothing to lose. 29 years later, Charlie is still going strong today.
It all started on the day I was born. From then on, it took over 50 years to destroy my liver. It was around 1980 when I started experiencing pain in my neck and shoulder area. My general physician performed the basic tests and had given me all the medication that he could think of. When none of it helped or yielded results, it was time for me to see a specialist.He referred me to a “bone doctor,” an orthopedic surgeon, who suspected my problem was due to a pinched nerve. However, when he tested my blood, he discovered that it was 100% saturated with iron. Because the liver controls the iron levels in the body, this was a pretty good indicator that something wasn’t right with mine.My doctor initially diagnosed me with hemochromatosis, which is a fancy way of saying a buildup of iron in the body. Your body doesn’t know what to do with all the excess iron, so it uses your bloodstream to transport and store it in areas like joints and organs, like your liver. The only fix for hemochromatosis is to have a pint of blood drained from your body once a week, which I did for about six weeks. The iron levels in my blood only continued to increase, however, and I was required to have even more blood drained from my system.It was during this time that my orthopedic surgeon discovered that the National Institutes of Health (NIH) were doing research on blood disease and he encouraged me to enroll in the testing program. I obliged and NIH kept me as a subject in their hospital for further research. At the end of the test period, they concluded that I either had liver disease (cirrhosis) or I had a blood condition that allowed the iron to build up, which was subsequently damaging my liver. Either way, they couldn’t come to a definitive conclusion as to what was happening.At that point, NIH referred me to a liver disease specialist, Dr. Jay Hoofnagle, at Georgetown University. He concluded that I was indeed suffering from liver cirrhosis, but the cause was idiopathic, or unknown. Therefore, Dr. Hoofnagle thought it best to begin monitoring me on a monthly basis.While I was being monitored month-to-month, the symptoms of my liver failure worsened. I began to experience intestinal flu-like symptoms that would last for an entire day at a time. When these symptoms became more frequent, I began to be hospitalized more and more, although always just an overnight stay to give me intravenous fluids for hydration. I was still traveling extensively for work at the time and, therefore, was admitted to numerous hospitals in different states all over the country.There were other symptoms that began to develop as well. For one thing, I was always tired. It got so severe during the later years of my illness that I would fall asleep anytime it was quiet for a split-second. The last year before my transplant, I would even doze off when stopped at a traffic light, only awakening when the driver behind me honked his horn.It was around this time that Dr. Hoofnagle informed me of a potential cure for my cirrhosis—the only known cure at the time. It was a new, experimental procedure that only a small percentage of people had survived: liver transplantation. When I asked where I would go for that, Dr. Hoofnagle singled out three of four hospitals in the United States where these transplants were currently being performed but, he told me, their survival rates weren’t great. Instead, he referred me to the University of Pittsburgh Medical Center (UPMC), where the inventor of liver transplantation, Dr. Thomas Starzl, worked and did his research.In 1990, I met with Dr. Starzl and he quickly determined that I needed to be put on the liver transplant waitlist. Before approving me for transplant, I went through extensive psychological, physical, and medical testing to ensure that I could handle the intensity of the operation. On May 1st, 1990, I was allowed to leave the hospital and return home to my wife, Joyce, and our three teenage children, equipped with a pager for the hospital to alert me when a liver became available. The CEO of the company I worked for, a transportation company called Norfolk Southern Corporation, assured me that the company airplane would fly me to Pittsburgh for the operation when I got the call. At the time, there was an extremely small window of time to transport a healthy liver from a deceased donor to a hospital for transplant—much shorter than it is today—and I needed to be ready to go at the drop of a hat.One day in early June of 1990, I remember going to work and feeling strange. I didn’t seem to have any control over my sense of direction. I called UPMC and they instructed me to come to Pittsburgh immediately. Joyce drove me to the hospital and we met with Dr. Starzl, who informed me that my ammonia levels were too high, which was causing my disorientation. He proceeded to tell me that my liver was shutting down and was currently functioning at just 5%. I had less than a month to live if I didn’t receive a transplant. I was admitted to UPMC and Dr. Starzl put me at the top of the transplant waitlist (Dr. Starzl singlehandedly managed the waitlist back then, not the government as they do today).On June 8th, a liver became available and I was quickly prepped for surgery. However, when the liver arrived in Pittsburgh, the transplant surgeons identified a certain defect that, unfortunately, made it unfit for transplant.Thankfully, another liver became available just two days later and, this time, I was able to receive my transplant. The operation took 12 hours in total. After the surgery, when I was moved from the operating room to my own hospital room, I had severe back pain, which they assured me was from being strapped down to the operating table for so long. Almost immediately, I was relieved to discover that every one of my previous symptoms related to my liver cirrhosis was gone.The only complication I experienced from my transplant was a hernia that Dr. Starzl found about a week after the surgery. I had it removed while I was still recovering in hospital. I stayed at UPMC for about a month to recover post-transplant and then for an additional month of labs and follow-up testing.Once I finally returned home, it took another month to fully recuperate and get back into the swing of things. During this last month of recovery, I slipped on a mud-covered board and broke my arm, but I pushed on and was able to return to work in September of that same year (1990). After that, I never had another sick day from work until I retired in October of 1995, five years later.Information about my donor or my donor’s family was not easily accessible back then, but we did learn that he was a 16-year old boy from Cleveland, Ohio, who had passed away in an accident.One of my older brothers also received a liver transplant about a year after my own. It was then that doctors compared our medical histories and were able to diagnose us both with alpha-1 antitrypsin (AAT) deficiency, a genetic disease in which the body does not make enough AAT, a protein made in the liver that helps protect the liver and lungs. Cirrhosis is common as well as emphysema and other related lung problems. Our entire family was tested for the disease; however, my brother and I were the only ones with the genetic defect that causes the deficiency.At the time of my liver transplant, Dr. Starzl told me that I still only had a 25% chance of living just five more years post-transplant. Boy, I’ve certainly beaten those odds! I’ve been fortunate enough to enjoy 29 additional years of life as a result of my transplant. Today, one of my daughters-in-law is 45 years old—that’s the same age as my liver! I’ve gained so much from my gift of life: I was able to complete a successful, 30-year career as Director of Research for Norfolk Southern, attend all three of my sons’ weddings, got to know and spend quality time with my six grandchildren, and enjoy 24 years of retirement (so far!) with Joyce, my best friend and faithful partner.
Written by Charlie Scott, liver transplant recipient. Edited by CC Cunningham, CKF Program Manager.