I was born with liver damage that, at the time, the doctors diagnosed as biliary atresia. My parents met with a genetic doctor to see if the liver issue could happen again if they had another child. The doctor said he was 99.99% sure that it wouldn’t. They had my little sister Michelle when I was around 2.5 years old. They found not long after birth that she too had liver damage.
On October 1st, 1991 at the age of 3 years old I received a liver transplant at the University of Nebraska Medical Center in Omaha, Nebraska. On January 17th, 1994 my sister received her liver transplant at the age of 3 years old as well at the same medical center I did. She was the Louisville “snow baby.” That’s the year we had 17 inches of snow and the city was paralyzed. People came from all over to shovel the then Southeast Church Parking lot on Hikes Lane. Thanks to so many “ordinary angels” my sister was able to make it to Omaha, NE for her life-saving transplant.
Over the years we would get sick easier than most kids. We were in and out of the hospital frequently whenever we got sick or dehydrated. In the early 2000’s a doctor from California reached out to our Gastroenterologist and wanted to do some genetic testing. She had heard about our case and wanted to see if we had something called Byler’s Syndrome. It’s a genetic disease where both parents must have the gene for their child to have it. Since our mother died in August of 1992 she was only able to test us and our Dad. Once the results came back she confirmed that we did in fact have Byler’s Syndrome, a genetic disease, that causes liver damage at birth. If they would have tried to have another child after Michelle, they would have had it too.
Over the years, one of the medications we took to help prevent organ rejection, had damaged our kidneys. In January of 2011 I became very ill and ended up being in the hospital for 4 weeks. My kidneys were shutting down. Once I was stable enough to go home, the Jewish Transplant Center started working me up for a transplant. My best friend Crystal volunteered to get tested to be a donor for me. The transplant coordinator called me on the afternoon of June 2, 2011 and told me that I was officially on the transplant list in case Crystal ended up not being a match. She said we could get a call at any time so be prepared and try to stay as healthy as I could. They also said I could get called in several times and the kidney could end up not being mine.
Around 2:30am on June 4th 2011 I got a call that a kidney might be available for me. We hurried down to the hospital. I tried to mentally prepare that it had been less than two days, so it may end up going to someone else. After many tests and vials of blood the nurse coordinator called me and said I was getting a kidney today.
Not long after I came home from the hospital and was recovering, Michelle went into kidney failure. Then Crystal stepped up again to get tested for Michelle and they ended up being a perfect match!! They had their surgeries on November 1st, 2011.
Organ donation has changed my life and my family’s life. I would not have lived much past 3 years old if it wasn’t for organ donation. Unfortunately, Michelle, passed away on May 7th, 2021 due to a stomach aneurysm. But thanks to her organ donors she got to live and enjoy life for 30 years. Our family and friends got to enjoy us past the age of 3, we are forever grateful for organ donors.