This? It’s the ugly part.

I wanted to be done this week. Done with this blog. Done with this stupid transplant journey. Done with a lot of things. 

But then I saw a comment from someone who was talking about this blog, and they said something along the lines of how wonderful and eye opening it was to be shown the whole transplant process. I didn’t start this blog to keep loved ones informed. No where online is there a resource at all for someone with AIH to go to to read about the transplant journey for us to prepare themselves.

So here I am- sharing with yall the hardest part of this whole process so far with the hopes it’ll help someone like me one day. 

My liver is failing. My MELD score is going up quickly. They are lowering my steroid dose to alleviate my steroid symptoms even for a brief period of time. But with that comes new liver symptoms. Confusion. Itching. Nausea. Not being able to eat. Dizziness. The list goes on. Then comes new rules like having to drink protein drinks so I don’t get protein malnourishment. No longer being able to go home. Being stuck in Benton, all the time. Not being allowed to drive. Starting new medicine to help lower my confusion hopefully. 

All of it is because I’m getting closer to a new liver: which is what I’ve wanted all along right? What blindsided me was the emotions that came flooding out after that doctor’s appointment. I am angry, so angry I have wanted to just scream and throw something at a wall. I have been sad, so sad that it has seemed like I’ll never be able to pick myself up and be happy again. I have been indifferent, to the point I don’t care what happens. I have had emotions pop up I’m not even able to completely identify. It’s a vicious cycle. One in which all I have been able to do is cry until I can’t breathe, sleep, wake up, and endure the next emotion until it has me on a puddle in the middle of the floor. 

Everyone says this is hard. But no one talks about what makes it hard or what you go through outside of doctors appointments. I am in the middle of a storm of emotions. But I know that it’s healthy to let yourself completely feel them, in their entirety so you know what you are dealing with and facing. 

I’ve never had any coping skills to speak of, it’s always been one of my biggest weaknesses. When I feel something, I feel it to my core. But never in a million years did I expect to feel this much of anything when it came to this transplant journey. Overcome with emotion isn’t even an accurate way to describe it. I’m not going to sugarcoat it, mentally I’ve been drowning. 

While I’m still trying to figure out which coping skills work best for me, it’s giving me something to focus on besides the emotions. 

It’s a lot to handle, even when you think you are doing great. Just remember: your feelings are valid, you are not going crazy, it’s okay to reach out to someone, and it’s okay to *feel* them. 

If you need to feel the emotions, let yourself feel them. If you need to watch Harry Potter movies until you are so submerged in the wizarding world to the point you’re like “oh, what liver?”, then do that. You know what you need, and when you’re at a loss there are counselors who are trained to help you through this crap. 

Don’t think you are alone in these feelings. They are so real. They change everything, and that’s okay. You just have to gather your tribe and figure out how to put one foot in front of the other again. 

Still over here learning all this myself, and it sucks. But one foot in front of another y’all. It’s all you can do. 

XOXO 

Ali