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Tyler- Liver Recipient

I had the privilege of interviewing Jud Duncan about his experience with donation on the morning of January 23, 2018.  This interview had been a long time coming, as we have tried to touch base several times in the past few months.  I was eager to hear more about his son Tyler, a liver recipient at the age of 15.

I had so many questions for Jud.  Why would such a young child need a liver transplant?  What was life like on the waiting list?  How did you get through this hard time? Were among the many questions that awaited answers.

Jud had a deep and calm voice over the phone.  He seemed at ease with speaking to me about the trials him and his partner, Vanessa, had endured over the years.  The constant trips to the hospital, the medicines, the medical bills, and the worry about their son’s wellbeing.

He begins: “We knew Tyler had kidney issues while Vanessa was still pregnant.  He would only function with one kidney, and we knew that.  However, what caught us off guard was when we started to see some changes in his health around 9 months of age.  We Life Flighted him to Cincinnati children’s hospital for evaluation, and we found out that he had liver and heart abnormalities.  No parent wants to hear that their child has any organ abnormalities. We were scared, and worried about what the future may hold for our family, and most importantly, for Tyler. 

Tyler was always a trooper during the years that followed.  He had routine visits to the hospital for testing and was poked and prodded for testing and surgical procedures, and hardly ever complained.  However, when he was 11 years old, we had the scare of a lifetime.

Tyler had been complaining about a headache, something that normally doesn’t bother him, and Vanessa had to rush him to the hospital.  He had some scans done, and when the doctor returned to our room with the results, he was as white as a sheet.  Tyler had had a brain aneurism.  11 year olds don’t have aneurisms.  We were all shaken to our core, after hearing this news.  We were prepared to hear that there were issues with the kidney, liver, or even the heart, but not the brain.  The brain was something new and scary.     

A few years full of close monitoring and testing passed, and Tyler was finally diagnosed with Alagille Syndrome.  With this diagnosis, it felt like the missing piece of the puzzle had been found that tied all of Tyler’s health struggles together.  It was at this time, we began the process of getting him listed for a Liver Transplant. 

It is a scary process, getting listed.  While you are sitting there answering questions from a team of doctors, surgeons, and nurses, you can’t help but think, ‘what if he doesn’t get the transplant he needs?  What happens then?’ and ‘what is this going to mean for our family?’.  Tyler went through several physical and psychological tests, just to be added to the transplant waiting list.  At the age of 13, we began waiting for the call that, just as easily, may have never come.

During the year and a half we waited for a liver for Tyler, Vanessa and I lived out of a bag. Because we were constantly making monthly trips to doctor’s appointments, we always had our bags packed.  Vanessa had bought color coded hangers so that, in the event we got the call, she could tell me to ‘pack everything on the white and black hangers’ so we could leave in a hurry.

 We got a call in October saying that there was a match for Tyler.  It was storming and raining like crazy, that day.  I’ll never forget it as long as I live.    We rushed and got everything together and got on the road to Cincinnati Children’s as fast as possible.  Typically, this ride to the hospital goes quickly for us. We were used to it, we knew what to expect, but in this instance, we were panicking.  We only had 5 hours to get to the hospital, and this trip seemed to take FOREVER.  Time slows down when your son’s life is at stake, it really does. 

We arrived at the hospital only to find out that the Liver they had lined up, was not viable for transplantation.  Back home we went, after a rough night’s sleep in the hospital.

Luckily the second call came in December.  The weather was beautiful, and it was like the stars had aligned for our son.  We knew that it was his day to receive his precious gift.    

We arrived at the hospital and waited for 24 hours to be taken back to surgery.  We were no stranger to waiting rooms, so we just went into auto pilot.

Once Tyler was taken back to surgery, we continued to wait an additional 16 hours before we could see him for the first time.  The surgery went well, and Tyler had a brand-new liver.  Someone had saved my Son’s life. 

We spent several weeks in the hospital for recovery after his surgery.  We missed Christmas, New Years, his February birthday and the unfortunate passing of his grandmother.  We would do it all again, if it meant having our son with us. 

Tyler engaged in “Hospital to Home Schooling” during his year and a half recovery time.  He is back to school now and doing well.  We are so proud of his progress.”

At this time, I asked Jud what he would say to his donor family if he had the opportunity.  There was a long silence on the line…I waited.

In a quiet and clear voice he said, “Just….Thank you”.

Tyler will be 17 in February of 2018.  “Vanessa and I were already registered donors before our experiences with Tyler, but this has really affirmed our decision” explains Jud. “You never know how your story is going to hit someone” he continues, “it’s so important for us to share our experiences and encourage everyone to be a registered donor”. 

Written by,

Stephanie Grooms