11/18/11

Home, Sweet Home...

We are home again!  We finished up our last appointment with the Transplant Team on Wednesday around 2:00 p.m.  After that, we hit the road.  Snoqualmie Pass was a bugger and it was snowy/rainy all the way to Spokane, were we decided to park it for the night.  I got my first full night (6 hrs) of sleep without waking up in about a million days and felt pretty refreshed.  After waking, we hurried along so that we could make it home just in time for Bobby to get ready for work and go. I made some phone calls and visited with Cody.  Pam from Seattle called and told me that Carla's PRA blood labs came back and they are getting way better.  The PRA labs measure the levels of antibodies Carla has developed towards antigens.   In Seattle they call having antibodies  "being sensitized".  Pam explained the test a bit better to me and so I will start at the beginning:  There are 2 Classes to the test.  Class 1 and  Class 2.  In April, Carla's Class 1 was at 48 and her Class 2 at 91 (highly sensitized); in May it was at 48 and 89, so had barely gone down; in September it was t 42 and 51, so had started to come down a bit.  In October it was still at 42 and 51 and Carla's test on Monday showed her to be at 22 and 26!  So, she is coming down nicely.  This means more opportunity for more hearts.

They are presenting her to a committee on Monday, the 28th.  After that we will know what she is listed at.  Dr. Law would like to list her at a higher priority level than Salt Lake had, he feels that the Plastic Bronchitis warrants higher priority because of it's ability to sneak up and be so deadly, and the fact that it is so unpredictable.

At this point we are trying to make all of the right decisions and move forward.  It is kind of like being between a rock and a hard place.  On one hand, she seems to be doing well, so keeping her own heart would seem to be a better choice.  Because, getting a transplant heart is essentially trading one disease for another.   BUT on the other hand, it is better to transplant while she is healthy than while she is on death's bed.  Her chances of survival are much higher in this scenario.  And, if she gets back to being at death's door there may not be a heart ready for her and she could die waiting.  So, our 2 choices, as I see them, are: 1) under react and 2) overreact.  We will be making our decisions and I will keep you advised.

Love, Jen

1 comment:

One Happy Heart Family said...

That's great news about her PRA's, that is so much lower!!!

I am so so sorry about being in the hard spot, Trust me I know how you feel, it's like how long do we wait, wait & see?? I hate it, there are always the what ifs???

Glad you got some great news at Seattle! Praying things continue to be good news!!