There were too many phone calls this morning wondering why Erin has suddenly gone off the deep end and is now teasing friends and family.
When Geoff was leaving the hospital yesterday one of the head transplant surgeons told us that effective immediately Geoff will no longer be receiving additional MELD points for his biliary tube. The region has changed the rules. There is no grandfathering, no nothing. HOLY WOW. Stunning.
One of the main reasons they put this tube in Geoff over a year ago was to "keep him healthy all while remaining at the top of the list". With this tube Geoff has been an automatic 20 MELD, which is very high considering they are transplanting at a 22-23 MELD in Dallas. This "loophole" was our break in the system.
Without the tube, Geoff's MELD is around a 13. A 13 MELD is pretty much non-existent in the transplant world. They actually won't even consider you for a transplant unless you are at least a 15. He will technically remain on the list, but until he reaches a higher MELD he will not even be ranked.
Here are the options (all this will be discussed much more in detail at liver clinic on Tuesday):
Well, the split-liver transplant is something that we would consider. According to the doctor you move up the list quicker because basically you are willing to "share" the organ with a pediatric patient. Unbelievable, I know.
The live donor transplant is NOT an option that Geoff would ever consider. Let me be blunt about this: asking someone to donate part of their liver is not nearly as simple as someone donating a kidney. There are too many unknowns. At this point, I would not even be willing to donate my liver. We are not at that place right now to even consider it.
Removing the tube is definitely going to be the next step. Geoff can not continue to use this "band-aid" because it will never get him the transplant that he needs.
We have come to the realization that Geoff will have to get sick in order to get this transplant. This whole idea of him walking into the transplant healthy is probably not going to happen. We are okay with all if this. It is only fair that he waits his turn like everyone else.
We have no idea how this will unfold. Geoff could have his tube removed and be perfectly fine for 2 years OR it could be removed and within months things could start to deteriorate. We have absolutely no idea.
So, our strategy has completely changed. We will know more on Tuesday after clinic.
Are you as stunned as we were?