Uh. A frustrating week!

March 16, 2015 - Last week, at our weekly clinic visit - Addie's liver numbers were slightly elevated. Not terribly elevated - but enough to get some hearts pumping and a concerned medical team.  When liver numbers bump up, especially in the first few months out of transplant - rejection is always a concern. Especially when there is nothing viral going on.  And our team of doctor's at Pittsburgh always error on the side of caution.  They are very proactive and aggressive in Addie's treatment.  I LOVE this about them.

From the same set of labs last week, Addie's prograf level (this is the amount of immunosuppression she has in her blood stream and gives us an idea of how well immune suppressed she is) was 5.8.  Considering they want to keep her level at 10 right now - her level is very low.  This MAY be the reason why her liver numbers are elevated.  So the plan is to increase prograf slightly and increase her steroids so IF she is rejecting - we can stop it right away.  Dr Kyle also ordered an ultrasound for Friday (of last week) to make sure that the liver still looked good and that all of the arteries and bile ducts were flowing nicely (see, I told you they were aggressive).  Thankfully, her liver looked beautiful.  Dr Kyle requested repeat labs for Monday (3/16/2015) morning.

As if this new wasn't enough, as we were walking out of the hospital from the ultrasound, Addie's transplant coordinator found us to tell us that Addie's EBV level was elevated.  Very elevated.  Crap. Seriously?? EBV (or mono) is a virus that most adults either have experienced or have been exposed to.  Most of us carry this virus without issue.  However, for a transplant patient, this virus can reek havoc.  Since it attacks the lymph nodes - in an immune suppressed patient, if left untreated, it can cause a form of lymphoma.  So getting it under control is vital.  Typically, in a transplant patient, EBV is treated by decreasing immunosuppression to allow the body to fight the virus.  Easy enough. Right?? Unless your body is starting to reject its new liver and decreasing immunosuppression would just make the rejection worse.

We repeated labs yesterday and unfortunately, her liver numbers elevated a bit more.  The theory, from last week, that elevated liver numbers were from a low prograf level was void.  Its likely rejection.  So, as of today, the plan is a liver biopsy.  This will allow us to see whats going on with Addie's liver and to make an effective plan with how to move forward.  The frustrating part is that we treat one of these issues - we fuel the other.  So we need to know exactly what we are dealing with and a biopsy will give us a clear picture.  We aren't sure of the details - but a biopsy will be scheduled for later this week.

The feelings of concerned, worried, scared, feeling defeated are coming bursting back into our hearts.  This situation can be treated. It's just a bit more complicated than what we hoped for. (for some reason, Addie likes complicated scenarios).  We will get through this.  Just as we have gotten through all of the other obstacles that we've faced, we will do what it takes to get Addie through this.  We trust that God's in control and that He will continue to show his power.

On the up side, Addie is starting to have much more energy.  She is slowly eating more and it is becoming much harder to keep her down.  Most days, she'd rather play with her sister that sit on the couch.  AND... the girls are even starting to fight with each other.  Sounds silly, but we love seeing things return to normal.  These days, its easy to find joy in the small things.  When life is shaken up - its much easier to be thankful for the things you typically take for granite.  Thats the silver lining, I guess.