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.
Here goes:
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):
- split-liver transplant
- live donor transplant
- Removing the tube and letting his body take over
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?
6 comments:
Stunned doesn't even describe it!! I am sorry that this is happening to you guys. It seems so unfair to take away those points after he has had them for so long. This system is so seriously flawed. And while Geoff waits some drunk is getting his liver. Not fair, not fair at all.
(((((hugs))))))
Well thank you!! Now I can continue on with my life and not wondering what was to come on Monday. ANyway, HOLY CRAP!! I am anxious to see what comes of the clinic. Keep us up-to-date and do not torture!!
I am so sorry, that is unreal.
I'm still so happy for you over the "NO Cancer!!!" Still, this "Too sick, not sick enough" game needs to resolve. Eureeka!!!
You're still in our prayers.
Can you explain what will happen if the tube is removed? I need to understand all the options before I pick which one I like best. If the tube is out, will he get a higher MELD score quickly? And an 80% success rate on the split-liver donor still sounds pretty hopeful. This sucks ass though, I'm sorry. And are they really giving you guys the choice between the three, or do they decide what they think is best and you guys just have to deal with it?
Goodness, goodness. What a roller coaster ride! Hang on tight...you'll make it!
Thoughts {and prayers} from Washington...
Post a Comment