When we listed my son for transplant due to his declining quality of life from Alagille syndrome (ALGS), the process moved quickly at first, then we found ourselves in a position where we were just waiting. We continued our regular routine appointments and medications, and life went on as normal, but we never knew if we’d get a call out of the blue at any time that he was going to receive his second chance at life.
One August day, about 2 months after listing him, we got a call from the transplant team. They asked if my son was feeling well, if he had any recent sicknesses, and how soon we would be able to get to the hospital. They said they had a potential liver match for him and would be in touch with us throughout the process.
We were in shock. We didn’t really know what to do besides pack our bags and wait around at home to see what would happen.
The liver team kept us in the loop the entire time. After a few phone calls back and forth regarding the possible liver, we found out that we were the backup for the liver in the event the first person to receive the offer wasn’t eligible for reasons such as the liver not being a match in size. The whole day we were so anxious and not sure what kind of emotions we should be feeling.
Read about experimental therapies for ALGS
Finally, that evening when we found out that the liver was a great fit for the first person available to receive it, we were emotionally drained and exhausted. Even though we had feelings of disappointment my son didn’t get the liver, we were so happy that another family was receiving the gift and another person was going to have a second chance at life with the new liver. We knew the time with the perfect liver for my son would eventually come.
After going through the experience of possibly receiving a liver, I feel that it helped us to better prepare for the actual day. It was almost like a trial run. I started to pack bags of things that we’d need like clothes, toiletries, and blankets so that when we did get the call we wouldn’t have to scramble around packing. I slept with my phone ringer on—something that I wasn’t doing because it didn’t even cross my mind before. We met with my in-laws who would be taking primary care of my other kids during this time to go over things such as meals they liked, their school schedules, and nighttime routines so that they were prepared on their end.
When the night came that we got the phone call at 1 AM that our son was the primary for an offer of a liver we were ecstatic. I felt we were so much more prepared. The feelings of anxiousness and fear were not as strong as the first time, but we had more feelings of excitement and hope. We were able to easily pack the car and even take a shower and brew some coffee for the road before we needed to head to the hospital. We set off to the hospital excited and ready for the journey.