Here I am Lord, send me

After this long night, it will be the time for my now annual checkup to make sure my body is doing a good enough job housing my donor liver and that nothing has turned hostile.

Today is the day I get to remember what’s actually possible and how grateful I am that it hasn’t occurred. …yet…

Every 6 months, I need to get a CT scan and labs done to ensure my body is still cancer-free. We look at organs, tumor markers, you name it – just looking for anything we can find to be wrong.

No matter how much faith I have, how many people I have rooting for me, no matter how much strength I can muster to get through each day, every 6 months I am left in a place I’d rather not revisit.  After all, it wasn’t but a little over 2 years ago when on this visit, I found out a tumor plagued my liver and I’d be instantly put on the transplant list.  What a difference an afternoon makes.  Oh, how ignorance is truly bliss.

The what’s and when’s replay in my mind even when I shoot them down. The statistics of recurring tumors and cancer and even kidney failure as a result of my medications… So many complications wouldn’t be a surprise. I’ve given up on sleep tonight.  I usually handle this better – much better – but lately, I’m just sick of being the patient.

Yet I know even if the worst did happen, I’d get through it just like I got through the past 20 years of sick and surgery and struggle. I’d get through it with my God and the wonderful people He has put into my life.

Aren’t we promised we have nothing to fear? Then why am I curled up in fear pleading with God to knock me out or let the Ativan kick in

This is uncensored real life, everyone. Sometimes there’s just no point hiding behind the wall.  This is me, and when you, God forbid, get to a similar point in your life, you’ll understand.

Please pray for me today for…
1) the stamina to get through a grocery list of tests and appointments
2) kindness when it’s the hardest
3) God’s will be done
4) I maintain an open, accepting spirit. “Here I am, Lord, send me.”

 Kelly Clarkson: Up to the Mountian

Oh, this is what it feels like…

I love you all and pray this away from each and every one of you. ❤  Please pray I get through this, one day at a time.

3 Month Update & A Prayer Request

Hi everyone,

Just a little update and a prayer request below.

I’m doing so great.  It’s been 3 months since my surgery, and I can’t help but reflect on where I’ve been.  Thinking back on my life with liver disease, waiting for the transplant, the surgery, the pain and horror, the blessings and overcoming… I’m still taking it all in.  Every time I see the huge scar on my abdomen, I want to complain and wish it gone, but then I remember it’s a symbol of where I’ve been and the story I have to share with the world.  This story, this journey, is not just about the 12” of scar I have going in 3 directions – it’s entwined into every part of my being.

Yes, of course there have been setbacks, but I’m used to them.  Not too much phases me anymore.  I’m grateful for this new peace I have.  Whatever comes, comes.  I think I finally understand the resilience you see in people who face huge trials.  Once you’ve been through so much, you are accustomed to fighting, struggling, and don’t fear the future.  You’re so thankful for the calm times but aren’t worried about the storms. After all, if you’ve already been through the worst, how bad could the future be?

This week, one of the surgeons officially cleared me to resume nursing school in January, so barring any complications with the College of Nursing, I’m good to go.  I’m so excited to dive back into what I love so much, with more compassion than ever.  I have some fears like “What if I forgot it all?” “What if I haven’t recovered enough?” but my heart knows it’ll be just fine.

Wednesday is a big day for me.  It’s time for my 3-month-scan to make sure the tumor hasn’t returned.  If you remember, I was diagnosed with Primary sclerosing cholangitis (liver disease) at age 5, and I was transplanted because it turned into a tumor in May of this year.  Chemoembolization eradicated the tumor.  While the pathology reports on my old liver and lymph nodes showed there were no signs of cancer, as a precaution, I have to have scans and special labs done every 3 months for the next 5 years just to make sure it hasn’t come back.  From what I understand, it’s just a contrast MRI (which I’m used to) as well as testing for “tumor markers” in my blood.  I really don’t know that much about it, but of course, I’m eager to learn.  I’m honestly a little scared about it simply because I don’t want to go through all of this again.  Please join me in praying the tumor is gone for good and that I continue to recover quickly.

I love you all, and please remember to take time to be grateful for life during this busy, stressful season.

Amanda

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