We’ve taken some time to ourselves to settle into that word. It’s not something we have taken lightly nor is it something we have really gotten a chance to cope with yet.

Mom is in rejection.

There are two types of rejection… Acute rejection and chronic rejection. Acute rejection happens in the first few months of transplantation normally and is a lot more common. Unfortunately, mom is going through chronic rejection.

Here is a general comparison of the two. Don’t let this graph scare you because we are already taking steps towards trying to slow down rejection before needing another liver.

As I write this, mom is currently in surgery. Our biopsy results let us know that she is in rejection and an MRI let us know that her bile ducts are closing and she has already lost 33% function of them. Today’s surgery is via endoscopy and during that endoscopy they will take a stent, push it from her intestine, up through her bile duct, and stent that duct to make sure that they can get normal flow back into her liver.

This is not a fix but it’s a step to try and bring her liver numbers back to a place they need to be.

Lots of things have happened over the past week that have been overwhelming for everyone. The word rejection alone is terrifying. You feel like you’ve done everything right and you can’t help but wonder if there was something you should have done different that could have avoided this road we are on.

The worst part of this has been telling people… or truly the lack there of. There is nothing worse than killing someone’s vibe when they excitedly ask “How’s Mom?!” Soooooo instead of killing the vibe we have just said “She’s alright!” “She’s seen better days!” “Eh, you know!”

Because honestly the look on people’s face when you let them know she’s in rejection is just a stab in the heart over and over and over again. It’s a constant reminder how much people care and it really fucking breaks your heart. You feel like you’re letting the team down.

When we first found out, I found out first. Me, the MyChart stalker, then Josan, mom’s transplant coordinator called me next. I knew I had to tell mom because we had been waiting for the biopsy results for over a week at this point. I had to really pause and get it together because this was honestly the worst news yet.

Mom took it bravely, as always. But immediately we all fell apart. After day one, all of us literally became numb and have been since. Moving through the motions one day at a time. Slowly watching her liver numbers creep higher and higher, getting worse and worse waiting for today.

The side effects of rejection are also gnarly. Depending on what’s causing your rejection can be a plethora of things but since it’s her bile ducts, she is itching all over her whole body, strong headaches and shooting pains up her side. Mom is still not gaining weight and she is now classified as moderately to severely malnourished. Nothing is giving her the boost she needs.

We are crossing our fingers, toes, and everything else that today’s surgery goes well and puts us back on the healing path. We need to come out of rejection. It’s not a choice.

xoxo

nell