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
I’m not sure my wife should have shared this blog with me so soon, I had a transplant last month and am paranoid about rejection already. If you make it through this maybe I’ll be less paranoid. I really hope you do, 16 months is not enough time to live and enjoy life – you should have longer.
Take heart. I made it through and, thanks to advances in medicine, rejection is no longer a death sentence. It it usually controlled pretty quickly.
God gives each a life,
And for some He grants one more.
Trust that He knows why!
I heard those words Memorial Day weekend. It’s a feeling you can’t really explain. I was very lucky I had a Liver stone it was removed and all is well. I’ve been following you on FB I also go to Lahey and have Pauline as my nurse, you are in great hands. I really like your analogies regarding the woods, out of the woods, edge of the woods. I am completely there so you are not alone. I hope everything gets under control. Best Wishes and stay strong!
Thanks Emily. It helps knowing others who have gone through it.
Prayers that you will be well very soon.
Will pray for you~ We live in an amazing time of advancements in transplants all all that accompanies them! God still has you firmly in His Hand, too, and as we are fully aware, He is the true source of all healing. He is the one who gave men their gifts to help others — even if those very people don’t recognize it as such.
wow Scott I am so sorry, that word also scares me , I am praying for you real hard. I know God is always with you , never give up, we wouldn’t let you. , I love you Aunt Betty
Praying for you man!
So true and the mantra to hold onto ” 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. “
Yupp. I WILL fight. New day, new perspective.
Scott sending up prayers for you and your family. Joshua chapter 1 verse 9,
Praying that God gives you strength and that you will come out on top of the mountain and look at the valley and see that is splendid view to see what we came through and how lovingly we are guided.
Scott your strength and resilience has been is amazing, your faith even more so, we pray for the best results and we pray for His will in every thing you are,, I/we love and admire what you have given us on this journey and a privilege\ in sharing it with you His will is not our own but His plan is perfect,, we l ove you and continue to pray on your behalf