Bombshell

Things change so quickly around here in Liverland. As a result, I have been putting off writing this post for quite some time.  I do want to keep you all up to date though, so here it goes.

Last month, on January 17, I received a phone call from our transplant coordinator that rocked my world. You see, I was under the impression that the biopsy which Elise underwent in December was the "ultimate" test with definitive results. Elise was taking her oral steroid medication for what doctors assumed was acute, mild rejection. David and I reviewed the biopsy results with her doctor, and all evidence did point to rejection, so I had accepted this as matter of fact, and we were dealing with it.  So, you can imagine, when our coordinator called with the following information, my brain froze; it was like "does-- not-  compute." She said, "Erin, I have good news and not-so-good news.... we know why Elise's labs have been so elevated, and it's NOT REJECTION....  the other thing is that she needs to be admitted again...tonight...to start IV Gancyclovir for the treatment of cytomegalovirus (CMV). After about 15 minutes of Sarah repeating herself and explaining her directions, I understood that she would call back when a room on the transplant floor was ready, and we would then go over to TCH for Elise to be admitted.  

Elise was admitted on that Friday night, the night before David's birthday, and we spent the next 5 days in the hospital. True to our fashion, we were admitted on a weeked, when liver team is not on service in the hospital. Thankfully, Elise's primary hepatologist documented admitting orders as well as a very specific treatment plan. Since we were no longer treating for rejection, the steroids were immediately discontinued, and her anti-rejection medication was decreased to the previous dosage which had done well with her for almost 9 months prior to this whole episode.  Elise was started on IV Gancyclovir (anti-viral) medication twice daily. Prior to discharge, Elise had a PICC (peripherally inserted central catheter) placed, and we agreed to a plan to continue IV Gancyclovir at home for 4-6 weeks to ensure that the virus is completely eradicated.

Elise has been home now for the last couple of weeks, and the improvement in her labs is astounding!  

Her AST has dropped from 250, to 78, to 53.

Her ALT has dropped from 287, to 104, to 52.

Her GGT has dropped from 181, to 61, to 27. 

NEXT MONTH will be Elise's 1st annual transplant review clinic.  I can not believe it's almost been a year since Elise received her gift. The improved quality of life she enjoys now is just amazing. I think about where we were at this time last year--and where we might be now had she not received her gift of life when she did-- and I just cry. 

As we gratefully anticipate Elise's 1st "transplantiversary," we know very well that there is another family--Julia's family-- still grieving. Every single solitary day, this weighs heavily on my mind. I hope that Elise will always be a living testament of Julia's "gift" though. With this in mind, "TEAM ELISE will be participating in Liver Walk Houston 2014 on April 26, 2014.  Elise is also registered for the Transplant Games of America, which Houston is hosting this summer.