The Beginning of the End?

Or perhaps, the end of the beginning?

Today began the beginning of the end, or perhaps the beginning of a new beginning. This week, after an MRCP and ultrasound, we discovered my liver disease (Primary Sclerosing Cholangitis, or PSC) has progressed and a transplant is imminent. I’ve been no stranger to this disease – maintainable with a healthy lifestyle, frequent observation, and medications… treatable only with a transplant. My doctor would always say pediatric cases go downhill unexpectedly and rather quickly. A mysterious tumor has developed on my liver, and it’s in a position where no one can be sure if it’s cancerous or benign.

I will spend most of this week meeting doctors and going through testing, and my doctor expects a deceased-donor transplant in the next 2-3 months. My case has been expedited, and I should have a new liver – and a new life – by the end of summer. In all likelihood, barring organ rejection or complications, I will be able to live a much fuller life after my recovery from this invasive surgery.

As my dad put it, I’ve gone from a marathon to a sprint, and right now I feel a little numb. My parents aren’t dealing very well, and this is going to take a toll on my whole family. My sister surprised me with a charm for my Pandora bracelet, and I know she loves me more than she lets on. I told my cousin, one of my best friends, tonight, and have scheduled meet-ups with my closest friends later this week so I can tell them in person rather than by a text or quick phone call.

My doctor recommended that I put my education on hold until I’ve fully recovered from the surgery, but she expects I will feel better than ever once everything is said and done. I’m excited about that, but so afraid of all of the unknowns. Although I’m no stranger to the hospital, a 2-4 week stay is very intimidating, and I’m not looking forward to having my abdomen sliced completely open vertically and horizontally. I’m really scared of the pain. Also, there are so many “what ifs,” and organ rejection or infection is definitely possible. Thankfully, my doctor said since I’m young, in good shape, and otherwise pretty healthy, I have a better chance of making it through the next few months. As terrible as it seems, an unknown family’s loss will hopefully give me an entire new life, health I’ve never experienced before.

Friends, realize the value of your life and how you can continue to make a difference long after you’re gone. Please go to your BMV or contact me if you’d like to be an organ donor. I can help you make your decision as I’m an advocate for LifeBanc and have been trained as an ambassador. I can assure you that all of the myths are false, and you have the power to change dozens of lives for decades after your death. We never know how many more breaths we’ll breathe, how many more sunrises and sunsets we’ll be here for. Nothing can be taken for granted.

I love each one of you who have taken the time to stop by and check in, and I covet your prayers for my whole family right now. We are especially praying for peace and courage as we finally go through what has been in the waiting for 17 1/2 years now.

Dear Lord,
We come before you tonight and pray for your grace to touch our lives. Lead us through the high waters as you have so many times before. Though I walk through the valley of the shadow of death, please let me fear no evil. I know you are with me, and I know my life is in your strong hands. Please be our strength and our peace as we proceed through this unknown territory. May your will be done in all things, and please give us the courage to continually follow your footsteps in unwavering faith.
Please guide all doctors involved in my case, and let the right liver come to me. Please be with the family who doesn’t know they’re about to lose a loved one in the next few months. I will make sure they know of my gratitude once I’ve received the gift of physical life. Thank you for your gift of eternal life.

Again, please give us the peace that passes understanding as none of this makes sense right now.

We love you, Lord.  Our trust is in you.

Love to you all,
Amanda

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