Hope & Mercy

Surgery is over.

Praise God, they are all over.
It’s been almost 6 weeks since I had my reconstructive surgery, and I’m back to real life.  I don’t see my reconstructive surgeon anymore, and my transplant surgeon saw me last week and gave me a clean bill of health.  We are all hoping (realistically) that this was my last surgery.
I did have some complications and ended up in the ICU but recovery has been pretty low-key.  I’m thankful for that, too.  God has showed Himself on many occasions.  His grace is overwhelming.
I attended a Beth Moore simulcast with my sweet friend Chelsey last month and her writing on grace was so beautiful to me:

Grace is an inflated raft that can submerge to the floor of a sea to save you.

 Grace is the silver thread that stitches up the shreds of mangled souls.

 Grace is the eye that finds us where it refuses, there, to leave us.

 Grace calls the waitress to the table and sits her down to wash her feet.

 Grace sees underneath the manhole on a street of self-destruction.

 Grace is the air to draw a breath in the belly of a whale.

 Grace is the courage to stand in the shamed wake of a frightful falling.

 Grace is the only fire hot enough to burn down a living hell.

 Grace waits with healing in His wings when we’re too mad to pray.

 Grace is the gravity that pulls us from depravity.

 Grace races us to the Throne when we make haste to repent and always outruns us.

 Grace treats us like we already are what we fear we’ll never become.

 Grace is the doorpost dripping red when the angel of death grips the knob.

 Grace is the stamp that says Ransomed on a life that screams Ruined.

 Grace sets a table before me in the presence of my enemy even when my enemy is me.

 Grace is the cloak that covers the naked and the palm that drops the rock.

 Grace is divine power burgeoning in the absence of all strength.

 Grace proves God true and every self-made man a liar for the sake of his own soul.

 Grace is the power to do what we cannot do for the Name of Christ to go where it has not been.

Grace is a room of a thousand mirrors, all reflecting the face of Christ.

 Grace is…

The eye popping

Knee dropping

Earth quaking

Pride breaking

Dark stabbing

Heart grabbing

Friend mending

Mind bending

Lame walking

Mute talking

Slave freeing

Devil fleeing

Death tolling

Stone rolling

Veil tearing

Glory flaring

Chin lifting

Sin sifting

 Dirt bleaching

World reaching

Past covering

Spirit hovering

Child defending

Happy ending

Heaven glancing

Feet dancing…

 Power of the Cross.

Jesus Christ, Grace Incarnate.

Copyright 2013 Beth Moore 

I have never in my life experienced God’s grace as I have in the past three years.  I feel so unworthy but so blessed.

 It is of the Lord’s mercies that we are not consumed, because his compassions fail not. They are new every morning: great is thy faithfulness.  Lamentations 3. 22-23

God’s in the tremors

With my surgery early in the morning, I cannot find rest.  In the meantime, I’ve been reading through some old entires and found this one.  God is so close by, even in the dark places, even in the tremors.  What mercy.

I don’t have much to say other than I’m afraid.  Honestly? I’m tired of all of this.  It’s not the life I would have chosen for myself, but as my mentor always reminds me, just like Jesus, we must say, “This is my portion and my cup.”  (Psalm 16) As nervous as I am, and as much as I look for God’s glory in all of this, I believe it will end up just fine (Romans 8), and I pray that God would use me and my story to bring Glory to His Kingdom.

Ann Voskamp posted a beautiful article on her blog yesterday entitled The Horse Principle and I dare you to read it right now.  A couple lines that resonated with me:

How did he know? That even when we’re broken, we battle onward, all the fixing coming in the moving forward… From where we stand, we can’t see whether it’s something’s good or bad. All we can see is that God’s sovereign and He is always good, working all things for good… My focus need only be on Him, to only faithfully see His Word, to wholly obey. Therein is the tree of life.

“Whatever You may do, I will thank You.
I am ready for all; I accept all.

Let only Your will be done in me…
And I’ll ask for nothing else, my Lord.“

~Charles de Foucauld

Do any of you feel like you’re with me right now? We don’t know why life is how it is, but despite that, we know that our beautiful Lord is sovereign and always good. If we know that, then why should we worry? Has he not come through again and again?

I truly believe: “All the fixing in the moving forward” (Ann Voskamp)

May we breathe in and out, YWHW, or Yah weh, calling our Lord with each breath even when we are too weak to utter words.  [How to Breathe Through Hard Times] He is with us, orchestrating something much bigger and grander than we can see right now.

Please pray for me tomorrow (Wednesday) and through the coming weeks as I recover from a very invasive surgery.  We are hoping this will be the last.  May God be glorified in our sufferings.  Only then can we endure the pain with joy and gratitude.

Remember, “God is always good and we are always loved.” – Ann Voskamp

Reconstructive surgery

The time has come.  As I’m nearing 3 years post-transplant and my incision has been cut open wide twice now, my transplant surgeon and the head of plastics/reconstructive surgery at the Cleveland Clinic have agreed to flip the green light on fixing the atrocity that has become my abdomen.  As some of you know, it was badly infected after my first surgery, so the second surgeon tried to close it to look better when he was done, but there really wasn’t much to make a large difference without gutting the whole thing and starting new.  So that’s what we’re doing at the end of the summer.

Yes, we are gutting my stomach just like a kitchen, ripping out the old, putting up the clean and new. I don’t think this journey will be a fun one, especially as I’m not required to do it.  You just go along with show when your life doesn’t have a chance.  But this is 100% my choice.

I’ve looked forward to this day for so long, but now that it’s here, I’m not sure if I want it.

You see, my stomach boldly shows all of my battle scars.  The staples, stitches, tubes, and drains.  I trace them when I’m falling asleep sometimes.  They are the only proof of my story, the only souvenir these past years of hell have left me with.  I don’t like what it is, but I like the idea of having it.  I’ve come to learn to ignore it pretty well and have long stopped getting sick every time I get out of the shower and have to look at it.  It’s a nuisance and affects my clothes and my posture, and it’s not pretty, so you’d think the decision would be easy.  But all 90 gashes surrounding my bold Mercedes-Benz logo, and each big bump where a tube or drain once fell from… they each so fully tell my story.  The agony, the pain, and the rising again.  It’s very symbolic to me. [Every time I say Mercedes-Benz I think of my friend Jenn S. who said, “Well at least it’s not a Hyundai.” #transplantfunny]

I will follow-through, but I’m sharing my mental process here as I know a lot of us are being transplanted younger and younger, these things are becoming issues.  I have no indication that this surgery for this reason has ever been done before, so if you feel like me and hope  someone has had good results from this , then I’m happy you’re here reading along.  I pray my experiences partially influence the future of transplants where you soon won’t have to look like you’ve had a near-death experience from the lines and grooves of your abdomen.  The memories are bad enough in my mind.  I don’t need them tattooed all over my skin.

Good, good news!!

Just wanted to check in really quickly and say that thanks to the prayers of you and so many others, I had so many awesome reports with my doctors today!

My labs are nearly perfect.  For the first time in my life, my red blood cell levels are normal.  My WBCs are still normal, and my platelets are just slightly elevated (which is fine).  No more anemia! Lots of immunity!  It’s been absolutely unbelievable what getting my spleen out has done for me.

My surgeon is letting me stop my prednisone, and my oncologist is letting me reduce my aspirin.  Stopping the prednisone is huge because that crazy drug gives me so many side effects, including an appetite you wouldn’t believe.  Also, it poses a lot of health risks with long term use, so I’m excited about getting off of it.  A risk is rejection, but with my Prograf and careful lab monitoring, we’d definitely be able to catch and fix it before it got bad.  I’m not worried about it.  Another risk is that the prednisone has been shown in some studies to prevent PSC (primary sclerosing cholangitis, the liver disease that started it all for me) from recurring in the new liver, but the research isn’t solid at this point.  So again, I’m not worried about it.

Then my transplant coordinator, Molly, had a great idea – to lose the prednisone weight I’ve gained (although I do weigh a lot less than I did a couple years ago) to see a dietician and start a strict 1500 calorie plan with very specific food intake. And exercise.  And water.  Pray for me!  At least it involves a very sweet iPhone app – “My Fitness Pal.”  See, it’s even a pal.  That makes it seem more fun.  🙂  Exercising with my fibromyalgia has always been tricky (unless it’s in a warm-water pool) but we’ll see how things go.

So then we talked about my incision which is perfectly healed.  I have a lot of pain, but my surgeon said it’s normal for this stage in the game.  Then we discussed the numb “pouch” below my scar, and my surgeon explained that because the nerves to them muscles were cut, it will never be able to firm back up.  So hopefully when he gives me the OK we can look into reconstructive surgery.  I wouldn’t care at all except sometimes you can see it through shirts and that bothers me.  Plus, what’s another surgery?  (I’m actually serious.  I am not afraid of surgery.)

My liver enzymes are great, and my ultrasound showed that my stent is in place and the profusion (blood flow) is excellent.  Yay!

So good news all around, and my energy levels have been very good.  I’m so grateful to be at this point.  It sure took a lot to get here, but I’m so thankful for each and every new day of renewed health.

Amanda

Recovery

Okay, I realize this is a little late, and I apologize.

I had my splenectomy Friday, was discharged from the hospital Wednesday, and today is now Friday again, and this is the first post-surgery update I’m sending.  I wasn’t that “plugged in” in the hospital.  I pretty much slept, had tests, and laid there for all those days.  I begged to come home early, and it was a success.  I’m so grateful for the early trip home!

So the surgery… it was a success.  My surgeons were shocked that the spleen inside me was larger than a football, when “normal” is the size of a fist.  We knew it was enlarged, but that big was just unbelievable.  It was so big that they just reopened my transplant scar.  They cut through all of it but a couple inches, therefore not leaving any bit of a new scar.  That was good news to me.  The bad news is how big the incision had to be – I have 40 staples for this, and I had 50 for my transplant.

As soon as the spleen left my body, my labs started increasing.  The white cells flew through the normal limit, and my platelets are actually in normal range.  I’ve never had normal labs since I was at least 5, and this spleen has been an issue since then.  My labs just started  getting worse during the past several months, thus prompting the surgery, a last resort, the last thread of hope.  My surgeon says my labs will stabilize soon.  He’s also having me start taking a tiny aspirin each morning in hopes to get my now high WBCs and few other labs stabilized.

Not sure how life will improve for me since I’m still weak/tired (from surgery, inactivity last week, and now pain pills) and am having huge incisional pain but let’s give it a couple weeks… I hope to feel so great, better than I’ve ever felt before!

Thank you so much for all the prayers, calls, cards, emails, gifts, you name it.  I am so grateful for your love.

Don’t forget the Lifebanc Walk & Run is tomorrow.  Please come if you can! It’s too late to pre-register but you can register at the door 7:30-8:30 tomorrow morning at Blossom.  Details on my site here.  I’m too weak to walk, but I will be there to thank my sweet team members.  Hope to see you there!

xoxo
Amanda 

A life like this

Hi everyone,

I am in surgery right now while you read this.  It’s a scheduled post, just a little something on my mind for you.

A life like this… I think these are just a few intrinsic desires we all have within us.
The avoidance of pain.
No disappointment of a life gone wrong.
And maybe, just maybe, enough hope to get through.

Coming up on my second major surgery in a year, I have conflicting thoughts. I have strong opinions that go both ways. And, I have enough memories to scare me out of this. Look at the 17” scar on your abdomen spanning three directions. Close your eyes. Imagine a scalpel piercing through your flesh, slicing down your very own abdomen again. More inches. One layer – skin. Next comes tissue. Then there’s muscle. More tissue. Sooner or later that knife will peel back the very last layer of your body revealing beating, pink organs. They are keeping you alive, and this surgeon over your body literally holds your next breath, your next heartbeat in his hands.

1. But thankfully, we have the promise of Psalm 31.15a. Really, truly, our life in someone else’s hands. Praise God.

My times are in Your hands; deliver me from my enemies.

Psalm 139.14

I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

Ecclesiastes 31.11 

He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end.

2. To avoid pain, Matthew 11:28-30 

Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light.

3. Disappointment of a life gone wrong, Jeremiah 29:11 

For surely I know the plans I have for you, says the Lord, plans for your welfare and not for harm, to give you a future with hope.

4. Hope to get through, Psalm 62.5

Find rest, O my soul, in God alone; my hope comes from Him.

Psalm 42.5

Why are you downcast, O my soul? Why so disturbed within me? Put your Hope in God, for I will yet praise him, my Savior and my God.

I hope this encourages you.  Say a little prayer for me right now. 🙂

Love,
Amanda 

Surgery, Frowny Faces & Pain

Oh, I am not looking forward to tomorrow.  Surgery.  Insert frowny face here.  We have to be at the Clinic at 5am.  Insert another frowny face here.  I’m almost glad it’s scheduled early, though, to get it over with.

Lots of frowny faces in my mind today…  I don’t want to be cut open all over again.  I don’t want to be in ICU, hooked up to half a dozen machines, at some in-between level of consciousness.  I don’t want to be babysat by nurses and residents for a week.  I don’t want to close my eyes and count my staples with my fingers for the first time.  I don’t want a feeding tube.  I don’t want to count the bruises on my arms from all of the IVs.  I really don’t want to miss out on several weeks of life, and I am still aching from the grudge I hold to whoever or whatever caused my transplant surgery and complications.  I don’t want to be medicated to the point where I sob when my mom leaves the room.  I hate wearing hospital gowns.  I don’t like being in major pain without having any more meds to take.  I don’t like not being able to care for myself, be it drying my hair or putting shoes on.  I’m a real person, and this is real stuff that I don’t want to experience again.  In fact, I don’t want anyone to ever experience again.

I think pain happens because we are here.  God – in His all-knowing reasoning – leads us down these paths we don’t want to cross.  Sometimes I think He has to.  We pull back and still He leads.  

Amazing grace, He carries us across the valleys.  We can close our eyes and rest in the palm of His Almighty hand until we get to solid ground.  

Yes, we’ll get there…

Abba, Father.