I should have known.
For probably around a month now, my vastly improved, post-transplant state of existence has been declining. I have been so tired, so utterly exhausted. I blamed a medication I take for fibromyalgia and even started taking less of it, but it didn’t seem to help. I noticed petechiae on my hands on Sunday and was itchy today – both symptoms I had before my transplant – so I was starting to wonder a little deeper.
Sure enough, I got a phone call from my transplant coordinator at the Clinic, Molly, and she said my liver enzymes from Monday’s labs were so high that they’re worried about acute rejection.
Rejection is an issue all transplant recipients face, and it can happen when your immune system isn’t suppressed enough, therefore causing it to “attack” your organ. The first months after transplant are riskiest as surgeons are still trying to get you at the exact dosage of medications to keep your medication symptoms low, yet your dosage effective.
And that’s where I am now. They stopped my mycophenolate mofetil (CellCept) right before my liver enzymes, unbeknownst to me, started increasing. This week, the levels were sky-high, way past the normal range.
So what does this mean for me?
I have to have a biopsy next week – which I am dreading due to really bad past experiences – and based on the results, my surgeons will determine the next course of treatment. If my liver cells do indeed show rejection, I will be put on IV steroids and possibly a course of increased oral steroids for awhile. They already have me back on the CellCept as of today, so hopefully that can take care of whatever is going on as well.
Honestly, I’m not sure what all of this means. Molly assures me, “The good thing about liver rejection is that it’s very treatable.” Yes, with a biopsy and IV steroids. Two terrible, awful things. In case you don’t recall, IV steroids make me laugh, scream, and cry all at the same time. They’re kind of magical in that respect! I had biopsies as a child but have terrifying memories of them and have not had one in probably 10-15 years.
Part of me says, “Look what I’ve been though. Do I seriously need something else? I can’t take anymore!” while another part of me says, “Look what I’ve been through. What’s one more thing? By now, I can handle anything.” The first way of thinking is louder, but the second way of thinking sounds better.
Please stay with me through this journey as you’ve been so good to do in the past. My biopsy is next Thursday, December 30th, and I will definitely be a nervous wreck until then. Any prayers or thoughts truly mean life to me.