Joey’s Story

Site created on January 14, 2019

The easiest way to understand Joey's backstory is in this video:

Newest Update

Journal entry by Bekah Eaker

Hey, everyone. We have some very big and scary news to share.

Last week, we received results from a recent liver biopsy that Joey had. It showed that he is headed toward liver failure.

The issue isn’t the liver itself. It’s complicated, but basically, his body created some blood clots that then calcified and shut off pathways to his liver. His body compensated and created new pathways, but they’re not good enough and certainly not sustainable.

This means, that if nothing is done, his liver will die. It could be in the next couple years; it could be 10 years. We don’t know.

The solution that his hepatologist is recommending is getting a multi-visceral organ transplant that would transplant intestine and some vascular structures.

Very few institutions in the country do this. Vanderbilt does not. Mayo Clinic does not.

We’re talking with 4 different institutions to see if he’s even a candidate for transplant and if he can get on a list.

To complicate things (part 1), you may remember last year when he wasn’t able to have his ostomy reversed because of all the scar tissue in his body. Because of this, we’re not even sure that surgery is a viable option.

To complicate things (part 2), even if he is accepted onto a list, because this is such a rare surgery that depends on donor availability (aka, another family’s worst day), it could be a long wait.

To complicate things (part 3), he continues to have nutritional needs. He remains on TPN (IV nutrition.) But guess what’s super bad for your liver? TPN.

And to complicate things (part 4), his COBRA insurance is expiring soon. We’re in a bit of a tailspin as we sort those details out.

You know that I’ve shared so much over the last 5.5 years, but this one has been difficult to talk about. I’m asking that you respect some boundaries we’re putting up to protect our hearts and not ask a ton of questions just yet or make every interaction about this thing. We have enough of the hard conversations going on right now between the 2 of us as we simultaneously pursue transplants and palliative care. We’ll expand those conversations when the time is right. In the meantime, let’s just talk puppies, and work, and TV shows, and just all the things that help us pretend our lives are normal.

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