Rejection is a big, scary word in the post-transplant world. I knew this was something I would likely need to deal with after my son’s liver transplant caused by his liver disease from Alagille syndrome (ALGS). Prior to Jackson receiving a transplant, I didn’t know much about the aftermath of organ donation.
My first experience with rejection came about a week after my son’s transplant. One night during his routine check the nurse found that he had a low-grade fever. She came back several times throughout the night and the fever was still present. The next morning he had his standard labs drawn. On that set of labs, it showed a jump in his liver enzyme numbers. It was too early to tell, but it wasn’t looking good.
My son’s health care team decided to run a full viral panel to see if perhaps he caught something since his siblings were at home sick or if we were facing rejection. Even though the fever subsided and didn’t last long, the labs continued to show an increase in liver enzymes, and the team was concerned he was experiencing rejection. I learned that the only way to fully know for sure was to complete a biopsy and look at the liver. They set up a biopsy and my son completed the necessary testing. Once the biopsy results came back, it was confirmed we were dealing with rejection.
The team first explained the rejection we were dealing with was mild and that we’d be treating him with IV steroids. They made sure to educate me that rejection can come and go and isn’t necessarily a huge concern unless it becomes a chronic situation. The liver team was great and very gentle with me. They explained that rejection can happen and that can be treated very easily. The wonderful thing about the organ we were dealing with is that it regenerates and can repair itself.
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We set Jackson up for a 5-day IV steroid treatment plan, but after 5 days his numbers weren’t improving, so they added additional days. After a few more days of treatment, the numbers started to decrease. We had to remain under watch in the hospital until they made sure that his body was holding good liver numbers on its own, well after the steroid treatment wrapped up.
Recently, we had another rejection scare. We made a switch from one immune suppressant to another a few months ago and have had a difficult time getting my son’s liver numbers stabilized. We are completing labs every 2 weeks and noticed a small but noticeable jump in his liver enzymes. His team wanted us to repeat labs in a week after adjusting his medication. Thankfully, in just a few days, the new set of labs showed a decrease in liver enzymes.
The liver team made sure to lay out the plan so I would understand if the labs came back the same or with increased numbers what the next steps would be. With understanding their full plan, I knew Jackson and our family were in good hands and it helped me to not worry. Even though rejection can always be an anxiety-inducing word after transplant, it’s so helpful to have an understanding and a great support system with the liver team to know that we will come out on the other side after overcoming this minor bump in the road.