How I Became a Living Liver Donor

Soon after my kidney donation on 9-30-2020, I started thinking about liver donation because the facts concerning liver disease and the deaths happening from lack of liver transplants mirror quite closely the deaths, 13 every day, for kidneys.

As near as I can tell, 8 people either die every day from lack of liver transplants or are removed from the liver waitlist due to their failing health and are no longer a candidate to go through the transplantation process.

I spoke to the excellent staff at UW Health in Madison, WI, where both Lynn and I donated our kidneys, about liver donation and they told me at 64 years old, my age at the time of my September kidney transplant (soon to be 65 in December) pushed me past their program age limit of 60. I just assumed that age 60 was a “standard” age limit across the board in the United States, so I never questioned it. I rather felt I was off the hook, so to speak. Maybe I really didn’t want to look into it further, I can’t remember exactly.

TOT 4.0, San Diego to Lubbock started in the spring of 2022. It was the start of the route tracing the path of Hugh’s kidney, my voucher recipient, from Southern California to Louisiana. As with all The Organ Trail rides, we had set up as many media events as possible, primarily contacting with the National Kidney Registry (NKR) member hospitals. Ernie Villalon, a Living Kidney Donor Coordinator at Keck Medicine of USC and an avid bicyclist contacted me when he learned about my ride and wanted to meet up and ride with me. After a few failed attempts, we were able to connect in Santa Monica and we rode from our friend Suzanne’s house to the campus of Keck Medicine.

We had a fun ride and we shared our experiences as a kidney donor and a living kidney coordinator combined with the common love of bike riding.

Once we arrived on campus and while Ernie was getting interviewed, I grabbed a soft drink and started talking to the nurse standing next to me. She happened to be from the living liver donation program and I mentioned that I had looked into living liver donation at UWMadison but they capped the age limit of living liver donors at 60. She smiled and said, “We go to 70.”

Back on the hook! Later that fall I passed an online screening questionnaire which led to an in-person evaluation in October, 2022 at Keck Medicine.

It was a very intense evaluation and I felt it was a bit more involved than my kidney testing.

They found I wasn’t a candidate to donate to an adult as my liver structure was such that they could not safely make the necessary incisions between veins, arteries, and bile ducts on my larger right lobe, which is used when donating to an adult. I was, however, able to donate a small slice of my left lobe, around 15% to 20% of my total liver volume, the Left Lateral Segment/Section, to a baby.

I scheduled for the Transplant Team to start looking for a match in late April of 2023, after our TOT 4.5, Lubbock, TX to Baton Rouge, LA bike ride.

Working with Children’s Hospital in Los Angeles (CHLA) Keck was able to make a match in early May and on May 25th I had my surgery and donated to a 9-month-old baby girl.

The Dr. has been very happy with both of our progress. We had the same surgeon, Dr. Yuri Genyk.

Selen’a family is actually from the Phoenix area. At Selena’s 6-month checkup, they noticed she was getting quite jaundiced including the whites of her eyes being greenish-yellow.
The family Dr. sent her directly to Children’s Hospital in Phoenix. They diagnosed biliary atresia. There is no cure for this disease beyond a transplant. Normally, they diagnose this condition in the first month or two. With Selena being 6 months old, time was of the essence to find a liver for transplant.
Children’s in Phoenix only does deceased donation transplants, the long-term treatment for this disease, and odds were slim a match could have been found in time to save her life. Without a transplant, the life expectancy from biliary atresia is less than 2 years. There is a procedure called Kasai that has shown some success but a liver transplant is preferred due to the liver normally being damaged from biliary atresia.

Phoenix Children’s recommended that Selena should be registered with a hospital that does living liver donations as that could be the fastest route to obtain a life-saving liver. They got connected with Children’s Hospital in Los Angeles, CHLA, which work’s closely with Keck Medicine of USC.

With older sister Amiyah in Phoenix, before heading to CHLA in California.

Waiting for a liver transplant.

We met Selena Rose, my recipient only 6 days after our surgeries.

Dad David, me, Selena, Mom Liliana, Lynn.

This is from a Facebook post from Liliana.

⚠️Update on Selena⚠️

On May 10th we got the call that they found a liver donor for Selena who was eager to donate soon! About a week later Selena was admitted into Phoenix Childrens with some minor complications she stayed until it was time to transport her to Los Angeles for her transplant. On May 25th she had her transplant surgery everything went well there was no complications and she has been healing very well and quickly !

Today June 2nd we were able to meet her amazing donor Mark and his wife. We can’t put into words how grateful we are for Mark and his wife. He gave Selena a second chance at life and for that we will forever be grateful! Mark and his wife Lynn have both also donated a kidney before and gave two other people a second chance at life including a baby boy! They truly are two angels walking this earth ! If you’d like to read more about their donation journeys they have a website you can visit to read their story and spread awareness. ❤️ The Organ Trail

Thank you to everyone who has prayed for Selena and sent well wishes throughout her journey and supported in anyway they could. Our family is very grateful.