Our transplant coordinator, Sarah, and I spoke several times over this past week. Today, we spoke again on the phone and exchanged several emails. Sarah says, "Erin, don't stress." I can't imagine why she thinks I would be stressing. Well, there might be a couple of things…
Last month, for Elise's annual transplant review clinic, her labs were great; she was essentially at her baseline: AST 56, ALT 52, GGT 24.
This past week, however, her liver panel has been elevated, and there is no clear explanation. We have had labs drawn three times within the past 7 days. Following the first draw last Wednesday, after confirming her CMV result to be negative, Dr. Fishman increased her Prograf (anti-rejection med) from 1 mL twice daily to 1.5 mL twice daily. Even with this med adjustment, her liver panel is not exactly back to baseline, which worries me. BUT, the good news is that her numbers are trending down, even if it is just slightly.
Here is a review of her liver panels the last week:
Wed 4/16/14: AST 94, ALT 139, GGT 43
Fri 4/18/14: AST 86, ALT 118, GGT 42
Tues 4/22/14: AST 80, ALT 114, GGT 38
I also inquired about her kidney function tests today. Prograf is notoriously hard on the kidneys, and since her Prograf dose has been bumped up a little, I just wanted to be sure everything looks good there and that she is well enough hydrated, etc. Her BUN is 14, Creatinine is 0.24-- both very normal!
Today Elise's WBC (white blood cell count) was 5.99, which is low (normal is 6-20), so Dr. Fishman suspects she may be fighting off a little bug in her system. I also pointed out that her Prograf level is still 4.4, even with the increased dosage, and historically, she does not absorb Prograf as well when she has some sort of acute illness such as a cold. She does not currently have any symptoms of a cold or other virus, but I will be watching her carefully and will bring her to the pediatrician at the first sign. It is very important to be proactive and treat acute illnesses, even minor issues, because any infection can stimulate her immune system and possibly trigger a rejection episode. That being said, her doctors say that they are comfortable with the fact that her numbers are trending in the right direction, so we will just continue to monitor very closely. We willl repeat labs on Sunday 4/27/14, and we are officially cleared to then proceed with our vacation plans, which will take us home to Louisiana for a few days, and then to Orange Beach!
So....repeat labs on Sunday morning. Which means I will have to wait until Monday for results. Sarah gave me a friendly reminder today, "You don't need to call the liver MD on call to get results on Sunday; I will call you on Monday." PSHHH.... like I would ever do that! lol. Oops.
Anyway, this Saturday, April 26, 2014, TEAM ELISE will be participating in Liver Life Walk Houston 2014 for the 3rd consecutive year to benefit the American Liver Foundation. Elise will be leading her pack...probably in sparkly pink high heels, if I had to guess.
Thank you all for the tremendous support you have all shown our sweet girl. She is so brave, and she amazes me every day. I don't know that I've ever had six tubes of blood drawn at one time ever, much less multiple times/week. But Elise endures this and more, and she does so with a smile on her face.
One final note.... April is National Organ Donor Awareness month! Elise was proud to be featured on the TCH Liver Transplant Center display board for the donate life day held on April 10. We attended the event, and we were very excited to meet the captain of Team Texas for the Transplant Games of America. He recognized Elise as soon as we walked up to the table....she is the youngest member of Team Texas, and she will be proud to participate in honor of her hero, her organ donor, Julia.
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| Elise checking herself out out on the TCH Liver Center display board!! |
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| Elise and me with our team captain (TEAM TEXAS) for the Transplant Games of America |
