BUMPS vs SPIKES

This morning, I brought Elise for her scheduled repeat lab work at Texas Children's Hospital, which was ordered due to her slightly elevated EBV (Ebstein-Barr Virus) level last week.  EBV was 2295 last week; ideally, EBV should be 0.  Anyway, labs were drawn this morning without incident, and we were back home in no time to begin the wait for results. 

As soon as I began texting my "liver mom" friends to find out whether they had heard from our transplant coordinator, as I was growing more and more anxious, our coordinator called. She asked, "Is Elise sick right now?" The dreaded question. That particular question from a transplant coordinator or liver doc can only mean one thing: abnormal/ elevated liver enzymes. My voice may have squeaked, as I responded, "No." I added, however, that I have been sick, so maybe whatever results she was about to report could related to Elise trying to fight off my cold virus; maybe she's just not yet symptomatic. Sarah agreed...."Definitely, that could be it." She went on to report that Elise's AST and ALT were elevated compared to last week, and that Dr. Fishman has ordered her anti-rejection medication-- Prograf-- dosage to be cut to 0.5 mL (0.25 mg) twice daily rather than 1 mL (0.5 mg) twice daily. Initially, I did not understand why we would lower her Prograf when her liver enzymes are already elevated, but Sarah anticipated my question and explained that Elise's Prograf level was 4.3, which is a little higher than their goal range of 2-3. It is important to keep her Prograf level low in order to keep her EBV level under control. So, basically, we are decreasing her immunosuppression to allow her body to fight off EBV as well as any cold virus she might have.  Sarah informed me that we need to repeat labs again next Thursday 10/17/13, but she said, "We're not worried, okay? Okay.

Lab results:  AST 62 (up from 52),   ALT 68 (up from 49), GGT 20

So I returned to my work for about 5 minutes before pulling out my notebook and analyzing her trend in labs line by line. I called Sarah, telling her that I needed a little further clarification. Specifically, I asked, "I know you said you all are not worried about Elise's current numbers, but how much wiggle room do we have? Her ALT spiked 19 pts, and Dr. Shepherd told me that a spike in ALT/GGT could mean rejection!" Sarah responded, "Elise's lab results reflect a BUMP, not a SPIKE!" Okay. So then I asked more questions, referencing the last time her labs "spiked." Again, Sarah corrected me. She said, "Elise's liver enzymes have never "SPIKED;" she has only had little, tiny "BUMPS" along the way since transplant.  A SPIKE would be an AST/ALT range in the high 100's or 200's. I told her that his additional information makes me feel so much better...that all I need is a little criteria for worry. Sarah said, "You guys are paying the doctors a lot of money to worry; let them do the worrying when they need to, and I'll tell you straight up when they are worrying." So I agreed to "pass the ball" and let Sarah serve, but I'm still the team captain.

So there's my lesson on the difference between a BUMP and a SPIKE.  I never was any good at volleyball, or any sport for that matter.

I realize that this update is heavy in the way of medical material and jargon which might mean very little to many of you, so I apologize for that; I did try to explain wherever possible. And for those that want all the details, there you have it. To summarize, Elise's lab results today were not exactly what I hoped for, but they were not unexpected considering Elise's known EBV issues, and her treatment team is not overly concerned; however, we are repeating labs next week to further assess the trend and make any medication adjustments necessary. 

We pray that Elise's liver continues to be happy and stable. I have all the faith in the world that our "coaches" Drs Fishman and Shepherd have lots of plays in their playbook to keep us on the winning side.  Most importantly though, I trust in God, and I envision him wrapping his arms around Elise's liver and binding any irritations or antibodies that threaten her.