January 20, 2015 – Back from Checkup

We just got back from a checkup.  First, all of the construction was gone for the first time in a long time, when we got on the highway in Illinois we did NOT see the sign – ‘Construction Next 35 Miles’ and that was a very big happy surprise.

This visit we did get into the old transplant house, happy surprise number 2.

Monday morning we met with transplant.  Her EF (Ejection Fraction) was effectively the same, 53%, which means that her heart is the same as the recent previous visits.  She does have severe tricuspid valve leakage, she has had some tricuspid value leakage since day one but has gotten worse from all the biopsies, but this is not new with this checkup.  Some bicuspid valve leakage is not uncommon for the general public but hers has turned severe because of all the biopsies.  The result of this is that they will NOT be doing any more biopsies unless there are clinical changes to prevent totally screwing up her valve which would require a replacement tricuspid valve and nobody wants that. For your general information they do not do biopsies on pediatric transplants, they just uses echos (echocardiograms). 

We also had a bit of education that made us feel better.  Rejection is only clinically significant when the heart function is effected and so far there has not been any dramatic heart function changes, Yippee to know that! So when the biopsies showed a R2 level rejection it was caught before any real damage and R1 rejections are not usually even treated. (R2 is worse than R1).  Even if there is some heart function changes once the rejection is stopped (more drugs) then the heart can repair itself  Bottom line quote from transplant doc was ‘I think you are doing very, very well’. 
Happy surprise number 3.

In the afternoon we met with hematology and her FLC (Free Light Chain) result is basically unchanged, good news.  Hematology is also very pleased.  Happy not so much a surprise number 4.

Here is the ‘we don’t know’ topic, they had not get the results of the Epstein–Barr virus (EBV) count before we met with any of the docs, long story.  The number made a pretty good jump up so we will have to wait to hear from hematology to see if anyone cares and if so what needs to be done.

All in all it was a good trip.