Wednesday, July 14, 2010

And the wait goes on...

Hi friends and family, its me again. Well the reason I didn't post anything lately is because there really hasn't been a darn thing to say. In April our scans came back good, still no tumors outside the liver. So we were supposed to get a bump in our points to a 29 (MELD Score) but we waited and waited and no word back from UCLA. After chasing them down at the beginning of June we got vague answers about how the board changed people, and we were denied. (denied more points or denied off the list!? They weren't clear and in some ways we wanna run from more bad news so we didn't press the point). Lots of confusion, no answers except a "don't worry it will all get worked out" (this was said by our UCLA transplant coordinator) so we left our hope in her words. And UCLA is re-submitting Mark's case, etc. Another point to my rambling story... you are supposed to be your own advocate, or maybe that's my job, but man I tell ya they wear you down. And you just pray the pieces fall into place because you are emotionally tapped. Shifting gears (again), technically we are supposed to have the usual quarterly round of scans very soon (like mid July) but haven't been assigned a due date. So all n' all you can tell we are confused. Our schedule and plan that they had laid out for us seems to have gotten all wishy washy in the past few months. So we started the "squeaky wheel gets the grease method"----- otherwise known as annoying them until we get answers.
But with all that said we are still totally confident we will get the plan back on track. Its just a lil' hiccup in the bureaucratic system. So once we get back on track we will be money. No worries. It will happen, patience is a virtue (lame cliche who the heck came up with that one?). So once we get that 29 finally assigned to us it will be on like donkey kong. And we will be waiting for the pager to blow up with hope! Bring it! We ready! Or as Tammy says "Do it!!!".

Love to you all,
Jenna xoxo

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