At the edge of the woods again

Rejection stinks. I remember having a huge crush on Donna Young when I was in tenth grade. She was the most beautiful girl I had ever seen with her long, straight blonde hair and radiant smile. But nothing worked on Donna. She smiled at my jokes and was polite, but my flirting always fell with a thud.

Rejection is a part of life but for transplant recipients it means something entirely different.

Sixteen months ago today I received 60% of my son’s liver in a life-saving transplant. Every single lab report since then has been stellar. My numbers have been perfect. In fact, at one point, my transplant nurse told me that my liver numbers were healthier than hers. I’m used to words like “remarkable” and “exemplary” in conversations about my recovery.

Today I heard the word all transplant recipients dread. “Rejection.” If you read my last blog post you remember that I commented about feeling “off.” I even said that I was worrying for nothing and that this week’s labs would be perfect as always.

I was wrong.

My liver numbers, my AST and ALT came back at more than 500 and 230. Perfect is around 40 for each. My heart came up into my throat despite nurse Pauline’s attempts to reassure me that we would handle it regardless of it was a virus or … and then she said it … “rejection.”

Twenty years ago we would be in absolute panic. Today, most cases of rejection are handled with boosts in medication. Often the biggest problems are the nasty side effects that come with the anti-rejection meds but sometimes the problems are much larger. Sometimes.

I’m part of an awesome support group of transplant survivors. The good side of that is that I’ve heard so many great stories of survival. The negative side is that I’ve felt my heart split when we’ve lost members to rejection and complications.  Sometimes the problems are much larger.

I remember writing a blog weeks after my surgery answering someone who asked if I was “out of the woods.” I explained that I was currently living and would live the rest of my life at the edge of the woods.

The tough thing now is that I was starting to forget about the woods altogether. I’ve been so strong for so long that I’ve actually had days without a single liver thought. I’ve had conversations entirely free from liver references. I’ve felt like I was far enough from the edge of the woods that I had to squint to even see its shadows of uncertainty.

“Rejection” brought me back to the edge of the woods instantly this afternoon. Doubt. Shadows. Anxiety. Fear. The woods are a scary place.

Tuesday I will go back to Lahey Hospital for more blood tests. I will sit and wait for the results. Then, if my numbers are still elevated, they will prep me for a liver biopsy to be certain of the degree of rejection. I’ve never prayed so hard for a virus! I’d love to have a virus and not rejection.

What am I feeling? Mostly numb. My mind wants to play out “what ifs” but I am mostly refusing to allow that.

Yes, I’m asking God why he would bring me this far and then allow rejection but I’m not asking in an angry way. Actually, I have more of a faithfully expectant tone. I know He’s got me and we’ll face whatever is ahead.

No, I do not believe I have the strength to go through another transplant if this is acute rejection that cannot be reversed. But, I wasn’t strong enough to go through what I have already endured. My God lends his strength when I have none of my own. I know we’ll face whatever is ahead together but thinking about it scares the bajeepers out of me.

Rejection. Sometimes. Virus. Biopsy. Words, words, words.

I’m praying that I will get back on a healthy track quickly. I hope you’ll join me in my prayers.

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. (NIV) Deuteronomy 31:8