Joy in the Journey Part 1: The Stage is Set

By: Wills Porter

Philmont Scout Ranch (Day 1 of 14)
Cimarron, NM.

While I am going to share my Transplant Journey in this blog series, I want to first ask you the reader something. When you think about your life, what do you think about the most? The reason for life… your purpose? For me I think about how my life could have been different. If you have a minute or so, I will explain exactly why I constantly think about this.

The Journey Begins

Shortly after I was born, I became extremely ill. I would go through phases of being well and falling ill. My pediatrician could not figure out what was going on and decided to refer me to Children’s Healthcare of Atlanta. When my family and I arrived at CHOA, the doctors got to work determining what was causing me to become so ill so often. Was it cancer? Was it basic infant jaundice? What was really going on? My doctors did not know and ran countless tests to determine what was going on with me. After doing an open liver biopsy my doctors learned that whatever was going on was not just basic infant jaundice.

By the time I was two, my growth had stunted completely, and I was not getting any better. In hopes of getting a second opinion, my family and I went to Ohio to get a second opinion of what was going on. While in Ohio, the doctors evaluated me and determined that I would probably not need a liver transplant and to give it time to see how some medicines to improve bile flow worked. Unfortunately, by the time I returned from Ohio things were not better. It was at this point that I was placed on the liver transplant waiting list.

Future Shattered

What do you tell a family whose idea of their child’s future is shattered? I was the first born and the only child at the time. Now within two years, my parents went from being new parents of a healthy child to being parents of a chronically ill child. While I do not remember much from my younger years, I know this to be true. My parents advocated for me and did everything they could to minimize the pain I felt. While I felt pain, there is no question that they felt pain too. They could do nothing to minimize the effects of my illness. They could only prevent and react to a certain point. At the end of the day I needed a transplant.

Life Changes

After waiting for a little while on the transplant wait list, my family got the call they were waiting for. A liver was ready for me. However, there was also another individual who may be a match. In following policy, my family and the other child’s family was notified to come to the hospital. Either I was about to be transplanted or the other child was. When my family arrived at the hospital, they learned about the other child whose family had been called to come to the hospital. This child was in much worse condition than I was and would most likely not live through the night. I was ill but I was going to live and see the next day. To my family, passing up on the liver was the right decision to make. I was in need, but the other child needed the liver more than I did. So, my family left the hospital while the other child was transplanted and lived. My time would eventually come to get my second chance at life. At least, that is what my family hoped.

After waiting on the list for awhile longer, my family received a second phone call to come to the hospital. This time, it was my turn to get a transplant. In excitement, my family and I made the one-hour drive to Atlanta. When we arrived, I was put in pre-op and the final steps were taken before the transplant procedure began. The stage was set. My life was just minutes away from changing forever. However, my life was not going to change in the way that my doctors and family hoped.

What happened?… You will have to find out on another day.     


Published by Wills Porter

Having been a transplant recipient of over 20 years, Wills is a living example of the life-transforming power of organ donation and transplant. While life after transplant has not always been easy, Wills believes that the challenges he has faced since his transplant have made him stronger and helped him take joy in his own transplant journey. As a KT author, podcast host and the director of research and development for Kidney Trails, Wills is focused on advancing the conversation around organ donation through innovative and extra organary ways.

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