Of course, my passion is driven by my DONOR HERO, whom I am grateful for each and every day. I have personally been through more than I ever thought I could handle, but this gift has made it possible for me to continue on brighter than before.
I would like to share this quote from a previous April donate life month, “Life IS a beautiful ride.”
It was determined shortly after birth that I had issues with my liver as I stayed jaundice much longer than normal. After many procedures and tests, my doctors discovered there was narrowing in the ducts in the right side of my liver (the left side was relatively normal). During my younger years, I went through many tests, doctor visits, and even an exploratory operation at five years old. I took medications that, at the time, were new to the medical field, all to keep my liver flowing and functioning properly. I participated in many studies and medical trials related to the liver and digestive system. I was finally diagnosed with Inter-hapatic colistacis recurrent. Regular doctor visits and blood work were a normal part of growing up for me. I did enjoy what I thought was a “normal” childhood playing sports, swimming, and enjoying beach vacations. My family was very supportive and understanding, consuming much of my mother’s time as she never left my side.
I decided to go away to college, which was quite a bold move considering my condition. In the spring of my freshmen year, I knew something was not right. I was experiencing pain in my lower back. After traveling home and a series of tests, it was time for my gallbladder to be removed come June of that year. I had a wonderful team at John’s Hopkins Hospital, including the Chief of Surgery, a very intelligent doctor who has since become a good friend, performed what was to be a routine gallbladder removal. Once inside, they found that my common bile duct was the size of a thread. This was unusual and required an alternative approach to my surgery, extending an extra flap found on my liver to replace my common bile duct. After 13 hours the surgery was done with another to follow in two weeks. Forty-two days later, I was able to leave the hospital.
I went back to college that fall, however after a couple of months did not feel well again. I left school and headed back to John’s Hopkins hospital, where an internal drainage catheter was inserted through my liver and into my new common bile duct to keep it open. Since the newly created common bile duct in the summer was not natural to the area, it began to narrow and decrease productivity. I remember asking if I was going to need a transplant, but it was not as common then, so I was encouraged to manage my current health status.
For 35 years and over 175 catheter changes throughout surgeries, I continued my somewhat “normal” life. I went back to college, graduated, began my career, and then for several years was a stay-at-home dad. What a wonderful experience!! Although there were certainly things I couldn’t do that most people do not realize could be a “restraint” that did not stop me – I was determined. I water skied, snow skied, rode horses, got married, and had two wonderful, healthy boys. One of my boys is currently in college, and the other is a high school student.
With time, age, and continuous catheter changes, fibrous tissue built up and closed off several areas of my liver, causing me to become very sick in the fall of 2018. After tests and evaluations, I was diagnosed with end-stage liver disease in November 2018 and was told I would have three months before hospice services were needed. I was recommended for a liver transplant, but the reality was I have a rare blood type, and I was unsure of what would happen next. I was officially listed on Monday, November 26th at 5:00 pm and received a call on Wednesday, November 28th at 1:19 pm while still at work that my gift was going to be available for me. After being listed, I never expected to receive a call so soon. I had no time to pack a bag, no preparation, nor guidance beforehand. After meeting with my entire work family, I left with mixed emotions. This was really happening now! I took my son out of school, and we headed to MUSC. We went through all the surgery workup and preparations that evening at the hospital. My wife was out of town on business and arrived at the hospital later that evening. The surgery was postponed until Thursday afternoon.
I was told that my Donor Hero was so GREAT that they were procuring as many organs and tissues as possible to share the GIFT OF LIFE.
My transplant team at MUSC was so incredibly knowledgeable and professional. The surgery went very well, the only complication being that I arrested once in the middle of the surgery. I was then gifted with broken ribs as they worked to revive me. Many ask, and yes, I do remember seeing the beautiful white bright lights; however, almost “as a hurricane force,” the many people praying and thinking of me at the time pushed me through. I am so grateful for everything. I made it back home in time for Christmas 2018.
Coming home and recovering was not possible without the tremendous support of my two sons. Now I can look forward to seeing them continue to grow, share in the memories of the future, all because my donor said YES.
I naturally feel a great need to give back, to share my story, to help educate and be there for others. I have been very fortunate through the opportunities to volunteer so far and look forward to ones in the future. The amazing team at We Are Sharing Hope SC and Donate Life have helped me learn so much about the complete process of transplantation. I have met with donor families, listened to their stories, and shared emotions with them. I have shared time and thoughts with pre- and post-transplant patients. I have worked with volunteers and the general public. I want to reach out and tell my story to those who are not as familiar with donation so they are more comfortable saying YES to signing up as an organ, eye, and tissue donor.