Hidden Good News

I’m writing from the hospital room that has taken over my whole week. I came in to UAMS because I’d gone through a week of throwing up, and 4 days of being able to keep absolutely nothing down. Our plan was to get fluids, so my body would have time to heal itself so I could start taking my medicine again. (I was throwing up every pill I tried to swallow.) 

Once we got to the ER and they did bloodwork we realized my liver was in the middle of a major flare. I’m talking enzymes over 1,000 when your typical range is 15-30. I knew my level would be up because of not being able to keep any medicine down, but I’ve been over 1,000 only one other time in my life, I think, I may be dreaming that at this moment, but I’m very sleep deprived. 

Obviously, my liver team admitted me and the goal was to get fluids in me, keep my nausea down, and be able to get medicine in pill form to stay down. So lots of IV steroids later and they’ve come down to the 600 range, which is still higher than I’ve been in a long time, but much more manageable than before. 

Yesterday, I had a good day. I ate real food, didn’t need any Zofran, and thought they would send me home today. But in the middle of the night I woke up and got sick to my stomach. Unfortunately, this set me back. Today they reintroduced my body to steroids in pill form, and I’ve done fairly well. I haven’t needed Zofran since the middle of the night, and have eaten some solid foods. 

I’m gonna be honest. I do not want to be here. Thinking about staying again makes me wanna cry (lol wanna is the wrong word- I’ve cried often this afternoon because I have to stay again). I am exhausted, sleep deprived, I have started gaining fluid on my abdomen which is one of the most uncomfortable things on the plant! My back is killing me between the extra fluid on my abdomen and the uncomfortable bed. I miss my dog. Y’all that’s the worst thing about being here- being away from Toby! This is the longest I’ve ever left him. I am SO SO thankful to have a village of people though! Toby has been enjoying his week with his Uncle Devin and Aunt Emily, and Emily’s parents Karen and Alan. The amount of overwhelming gratitude I have for the unexpected major growth of our village is amazing. 

I am anxious to get home, anxious to feel better, anxious to get a new liver— OH! By the way, as of January 23 I am officially on the waiting list for a new liver. It’s official.(That is the good news y’all. It means I can get a call for a new liver at any point now!) I most likely will still be going through oral surgery on February 4th, but they feel that is the safest option for me. Just in case, if my liver acts up, I’ll already be on the list and they can bump me up depending on my MELD score. My liver doctor could still make the decision that surgery isn’t safe for me, and will be monitoring my levels and this flare up very closely and make the real call closer to the date. 

Just say a prayer, send some love and positive energy my way. I’m spending my first night this week in this hospital by myself, and I don’t always do the greatest with that. But, I’m trying to focus on the fact that tonight, Kevin and Toby will be home getting much needed rest before Kevin goes back to work tomorrow. I have amazing nurses who have been life savers this week. And the possibility of me getting to go home tomorrow are much bigger than they were today. 

If you made it this far- I appreciate it. Thank you for letting my little snippet of my current world be shared.