“In the months after my dad’s liver transplant, I have watched him come back to life. He is back to the person he was before his liver failed him.”
How It Began: Our World Turned Upside Down
In December 2019, our world was turned upside down and our lives changed forever. We were preparing for the holiday season and getting ready for another basketball season, my father as a referee and both of us as coaches. Little did we know that the month of December would forever change us.
My father had been living with ulcerative colitis (UC) and primary sclerosing cholangitis (PSC) for over ten years. The exact cause for these diseases is unknown but his team of doctors at Penn kept him in great health. His UC had been well controlled and basically not an issue, but he would have flares with his PSC. Each year he would have an Endoscopic Retrograde Cholangiopancreatography (ERCP) procedure to get a closer look at his liver and clean out his bile ducts. Penn closely monitored his liver function with labs and there were many MRI’s. The team were very transparent that liver cancer or a liver transplant could be something he would face but for some reason transplant never stuck in our heads. We were focused on the cancer, that was, until December of 2019.
When Our Journey Turned Towards Transplant
December 2019 was when my father had his first hospitalization with sepsis, and we learned that his liver was failing. It wasn’t cancer, he needed a transplant. He came home from the hospital a few days before Christmas and it was then I started to notice his coloring. He was starting to look more yellow, jaundice. My father works outside for a living, so we all thought he was holding onto his tan, but it was then that I noticed his eyes. The sclera was starting to turn yellow and he wasn’t tan he was jaundiced. He really was going into liver failure, why hadn’t I noticed the signs.
It was at this time my father was referred to the transplant team at Penn Transplant Institute and I became the go to person for my family for information. I am pediatric critical care nurse at The Children’s Hospital of Philadelphia (CHOP) who happens to also be trained in caring for transplant patients. My parents asked me to come with them to appointments so I could explain things and ask questions so they could better understand everything that was happening. Then, I would get on conference calls with my siblings and talk with them about the appointments. Over the next three months, there were multiple hospitalizations, doctor’s appointments and family meetings.
Learning About Living Donor Liver Transplantation
In February my siblings, parents and I attended Penn’s transplant evaluation day and learned about living donation. All three of us were going to be tested to see who was a match. There was nothing that would stop any of us. Our father is a special man and we all have our own special bond with him.
Though living-donor liver transplants have been performed in the United States for nearly three decades, they are still rare. In 2019, just 524 of the 8,372 livers used in transplants came from living donors, according to the United Network for Organ Sharing (UNOS), the organization that coordinates transplant lists across the country. And, in live-liver donation, unlike other organs, livers regenerate. If the donor and recipient are a match, transplant surgeons can take a portion of a donor’s liver and transplant it into the patient, skipping what can be a years-long wait for a deceased donor liver.
In the beginning of March, we found out my sister and I were both a match, we couldn’t believe it. We had two matches, who was going to be the first one to be evaluated? My brother, sister and I talked and we decided I would go first. It wasn’t an easy decision but the three of us thought it would be easier for me to go first because of my flexibility with my schedule and proximity to the hospital. We let our coordinator know the second week of March and we were going to set up my testing.
Life Saving Living Donor Liver Transplant On Hold
In mid-March of 2020, the World Health Organization (WHO) declared the COVID-19 outbreak a pandemic and Pennsylvania’s governor ordered hospitals statewide to suspend non-urgent and elective procedures to limit exposure to the disease. Penn, in line with a nationwide trend to balance the risks and benefits for both the donors and recipients, decided to pause its living donor transplant procedures. Our hope of giving my father a new life in April was placed on hold. Over the next two months I watched my father get sicker and sicker. He lost 30lbs, his coloring was getting worse and he was hospitalized every 4-5 weeks with sepsis. He came home with PICC lines and midlines – catheters - and weeks of antibiotics. Through it all he was trying to live his life and be as normal as possible.
It was during this time my decision to give my dad my liver was solidified. My father has always been a hero to me. He coached me in basketball all the way through high school and was a role model of what a parent should be. He is the original version of a “girl dad.” I knew that if the tables were turned, he would be doing the same thing for me. He wants to see his grandchildren graduate from high school and more. I wanted to make sure his goal was reached, and he could be the hero to them that he was to me.
Finally, in May, the living donor program reopened and I completed my testing in record time. Our surgery date was scheduled for June 11th, just in time for Father’s Day. I was going to give my dad life for Father’s Day, what could be more appropriate. Then, we hit another speed bump and our surgery was delayed two days before our scheduled date. The emotions of that day and the days that followed were overwhelming - I was angry, frustrated and annoyed. I had been so mentally prepared for surgery I forgot to even consider another delay. But things happen for a reason and this opened my eyes.
When the time was right, we got our new date - July 7th - four days after my parents 51st wedding anniversary. Now it was time for me to mentally prepare. I had been out of work due to quarantining since May 29th, so we completed everything on my mom’s and his “honey-do list”. Over this time my determination to help my father grew. He didn’t want me to do this, but he also knew he couldn’t stop me. My nerves and anxiety were high so I turned to meditation and working out. My focus was to be at my best so he could continue his life and be his best.
A Second Chance at Life: Our Transplant
The morning of the transplant was emotional. My parents, sister and I left the house at 4am for a 5am arrival at Penn in Philadelphia. My sister was assigned to stay with me and my mom to with dad. The nurses and doctors allowed my mom and sister to go back and forth between us which was great. They placed my IV, the doctors came by to do one more review with me and then it was time to go back. I walked down to see my dad and to give him a hug. Of course, there were laughs and tears, but we promised to see each other on the other side. I hugged my mom and sister and walked back to my room.
It was a long day for my family. My surgery took close to 7 hours and my dad’s transplant took close to 12 hours. My mother’s and sister’s emotions and mental strength were tested and strained that day. I remember waking up and seeing my sister and just wanting to know about my dad but, it would be hours before he was out of surgery. When I finally got word around 10 PM that the transplant went well and he was okay, I knew the first step to recovery had started.
The next month would have many bumps in recovery for my dad but overall it went well. During our week in the hospital together we were four rooms apart and would take walks around the floor and sit with each other. After my discharge I would spend a few hours a day visiting my father and getting updates with the team. They always would laugh when they saw me because they could check on me as well. My family can’t thank the transplant floor enough for allowing me to be there with him. It made it so much easier on all of us, especially me.
The day I was discharged I cried. I didn’t want to leave my dad even though I knew I needed to be home to recover. Leaving him meant I was not going to be there to protect him. His whole life he has protected his children and it was my turn to protect him and make sure we didn’t miss anything. I took on a new role, not only was I his daughter, a mother, a sister, an aunt, I became his advocate. And this was something I wouldn’t change for the world.
In the months after my dad’s liver transplant, I have watched him come back to life. He is back to the person he was before his liver failed him. Dr. Stacey Prenner, my dad’s transplant hepatologist, and the entire Penn Transplant team has become part of our family. We are so thankful for them. They gave us our father and my mom got her husband back, he is one special person. Going through all of this has given my family a new perspective on life and I would not change any of it. Just like my father had given me life, I had returned the favor and given it back to him.