Paranoia, paranoia, everybody's coming to get me.

It was awesome to be awake.  They told me I'd feel like I was hit by a bus, but I didn't feel like that.  I had a nice little button I could press for pain meds, and they kept telling me to press it more than I was.  Soon enough they realized I didn't need that hardcore of pain meds anymore, and they switched me over to percocet -- always my drug of preference ;) :P  I told them that I responded well to it in the past, and so that's what I got.  Except this time.. I didn't respond so well.  

There are a few theories for this:

1) My body was still pretty sick and recouping from all it went through, so it was extra sensitive to the medication

or my theory:

2) I couldn't eat, drink, or swallow anything so they took percocet pills, crushed them, and put them into a tube in my stomach, resulting in metabolizing the drug differently, and more quickly... making me go...well, completely nuts.

I would freak out.  I stopped believing that I was breathing.. This is "normal" after transplant because my entire life I had to consciously work to breathe.. and now I don't.  Ok, so every 5 minutes.. sometimes I didn't even make it that long.. I'd have a panic attack and ask my mom if I was really breathing.. I'd ask every doc that came in, every nurse, every friend.. anyone who stepped foot into my room became victim of my panic.  I couldn't see straight, and the room often spun, especially at the peak times of the drugs.  I was paranoid, too. The nurses were obviously out to get me, and my mom had apparently taken their side.  I didn't believe anything anyone told me, and felt I truly couldn't trust anyone.. anyone that is, besides Jesus.

Of course the nurses weren't there to do anything but help me, and my mom would be the last person to take someone's side against mine, but I was completely convinced, and I have to say, even though that wasn't actual reality, it was my reality, and it scared me more than anything.  Who could I trust to take care of me now when I still couldn't speak, and now physically couldn't move (my muscles were gone after surgery)?  Oh right.  God.  The One thing that remained, the One that I knew beyond a shadow of a doubt wouldn't leave me was my Savior.  

"Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.” Deuteronomy 31:6

Woof.  He will NEVER leave you, and he will NEVER forsake you.  When you're reality is that everyone is against you, there's always One who's got your back. always. 

So I talked to him.  I called upon the name of Jesus so many times in complete and utter terror that I couldn't have said a word even if I had the ability to talk. And in that complete and utter terror, the Lord answered, and would bring me comfort, and coherence.  I can vividly remember awful nightmares I would have (the times I was calm enough to actually sleep), and actually praying in my dreams, pleading for God to wake me up because I was so scared.  And he did.. every single time.  He didn't let me linger in my fear.  Perfect love casts out fear (1 John 4:18)... God IS love (1 John 4:8) and God NEVER leaves me.. This is like one of those "if a=b and b=c" type equations.  If God is love, and God never leaves me, that means love never leaves me.  Fear can't be in the presence of perfect love (God), therefore, I can't remain in fear when I focus on God.  Yet again, God held true to his promises.  Does anyone else see a trend here?

So in those moments when I was frustrated, lonely, scared, terrified, completely confused, drastically drugged, panicking beyond my control, and perpetually paranoid, God was still faithful to me, and it had absolutely nothing to do with who I am, what circumstance or frenzy I found myself in that day, or anything I had done or not done.. It's just because God loves us.  Yes, us.  We all go through different situations, different emotions, different struggles... but when you're confused, depressed, paranoid, whatever your trial may be.. know that when you can't trust anyone, you can trust God; know that there will always be at least one who wants to help you, one who is always rooting for you, and you will always have a number one fan.. when you walk with him you realize you'll never be alone; he will never forsake you.  His name is Jesus.  He died for you.  He's not going to leave you high and dry now.

When I thought I was on my own, I never really was alone because God is love.

We interrupt these transplant messages...

I WILL keep posting about transplant.. obv the story isn't finished yet.. but a friend brought to mind a certain Psalm tonight and I can't helppp but post about it. I just love it. 



"Vindicate me, O God, And plead my cause against an ungodly nation; Oh, deliver me from the deceitful and unjust man! For You are the God of my strength; Why do You cast me off? Why do I go mourning because of the oppression of the enemy? Oh, send out Your light and Your truth! Let them lead me; Let them bring me to Your holy hill And to Your tabernacle. Then I will go to the altar of God, To God my exceeding joy; And on the harp I will praise You, O God, my God. Why are you cast down, O my soul? And why are you disquieted within me? Hope in God; For I shall yet praise Him, The help of my countenance and my God." 

Psalms 43:1-5


Woof.. that's a lot to take in.. especially from David.  Yeah, you know.. the man who was King David.  Deemed the man after God's own heart.  That guy who killed the mighty (and very scary) Goliath when his job wasn't to be a warrior, but to watch sheep... He's also the  guy who slept with a married woman, got her pregnant, tried to pass it off as her husband's doing, and when he could't, killed the husband and married the now widowed wife.  Um, what?  And THIS is the man that God proclaims is after His own heart?

I could go on and on about David forever.. Not only does the Bible comment on his studly looks (like hey baby worthy looks), but it also shows us our true human nature through him, and how God loves us just the same even when we are on that crazy roller coaster of emotions.

"Vindicate me, O God..." Why should he?  What have we done to deserve clearance or be absolved from our sins?  Oh sure, I never killed anyone like David did... but that one lie I told last week was enough to nail Jesus on the cross.  And it's not limited to that one lie, I haven't just sinned ONCE.  Jesus died on that cross loooong before I could even speak, let alone before any perversity could come from my mouth.. he took the punishment for it.  And now, because of that.. because I have accepted Christ, follow him, and his blood has washed me white as snow, I am vindicated. I am absolved. I am redeemed.  Now this doesn't mean that I won't ever ever sin again.. but it does mean that Jesus has already got my back when I do sin, and all I have to do is turn my heart back to him, and say sorry.  And even when that happens, how sweet of God to correct me gently. 

"So correct me, LORD, but please be gentle. Do not correct me in anger, for I would die."
Jeremiah 10:24


"For you are the God of my strength; Why do you cast me off?" -- Ever feel like God isn't responding to you?  Like He's just cast you off, doesn't care, or isn't responding to your needs?  This is where things start to get a little sticky... we trust our emotions. Everyone says follow your heart, do what you feel and think is best.. But the Bible tells us opposite.

"The heart is deceitful above all things and beyond cure. Who can understand it?" - Jeremiah 17:9

"For out of the heart come evil thoughts--murder, adultery, sexual immorality, theft, false testimony, slander." - Matthew 15:19

We can't always trust our feelings.  They can be deceitful and evil without us recognizing it.  What we can trust, no matter how we are feeling is God's Word.

"Heaven and earth will pass away, but my words will never pass away." - Luke 21:33, Matthew 24:35, Mark 13:31

Wow.. important enough to restate three times... HIS WORD WILL NOT PASS AWAY and that means we can trust it to ALWAYS be true.  And what does it tell us when we feel like God doesn't care and is far away?  Well firstly it tell us over and over and over how carefully and with specific plans God created us.  How he loves us so unconditionally and unstoppably (that's actually a word!), and how he wants us to come to him.

"Come close to God, and God will come close to you." - James 4:8a

The verse goes on to tell us how to come closer to God.. We are to wash our hands of sin (and wash them physically of germs.. but that parts not biblical... just good hygiene :P), purify our hearts, and stop being divided between the world and God.

God doesn't write you off. I mean, if David, who committed most of those evil things in Matthew 15:19 turned back to the Lord continually, and God still named David the one after God's own heart... well I don't know about you, but that makes me feel a whole lot better when I feel like God is casting me off.. His Word reminds us that he's calling us in, not casting us off. I can imagine God saying..

Come near to me, dear one.  Wash your hands, purify your heart, and set your mind on me. I can't wait until you let me draw near to you.

"Oh, send out your light and your truth! Let them lead me..." -- In Proverbs it tells us countless times to seek truth and wisdom and understanding.. but what I love about this part of the verse is the verse it connects with.. 

John 1:5 "The light shines in the darkness and the darkness can never extinguish it."

David knew that the only spark of hope in a dark, dark place was God's light. The same holds true to us.  No matter WHAT we are going through, from something seemingly small, to things so big we could've never imagined them, darkness will never be able to put out God's light.  And more so, the light let's you see.  I know you're thinking.. well, duh.  Bear with me here, and trust me, I'm not on any percocet today :P  The light lets you see things otherwise hidden in darkness... In other words, the light exposes the truth.  How often do I ask God to send me his light and truth and let them guide me?  That's the best kind of guide someone could have.. and yet.. do I ask, or do I wander around in the darkness, without seeing, without truth.. without a guide?

"Then I will go to the altar of God, To God my exceeding joy; And on the harp I will praise You, O God, my God." -- TRUST HIM, then PRAISE HIM! David was SO confident that God would rescue him, he started making plans of praising God before anything had even changed yet!  How awesome is that, and talk about hope!  He's already feeling more joyful because of the hope promised in God.  Trust God.. he goes way beyond our expectations.

"Why are you cast down, O my soul? And why are you disquieted within me? Hope in God; For I shall yet praise Him, The help of my countenance and my God." --So... he just started feeling a little better.. talking about praising God and being joyful.. and then goes back to how his soul is down cast.. sometimes just in our humanness, our emotions don't make sense.. and it's ok.  It's ok to be sad sometimes for a good reason, or for no reason at all. The part that isn't ok is if you stay there.  It's so easy to throw a pity party or start snowballing into negativity (trust me.. i could build 98674 snowmen with all the snowballs i've accumulated) but David didn't.  He spoke the truth about how he was feeling.. "cast down.. disquieted".  What are your true feelings?  Sadness, depression, joyfulness, discontentedness..etc?  Whatever it is.. it's ok to feel that.. but don't forget the most important part trailing behind that.. "Hope in God; For I shall yet praise Him, the help of my countenance and my God" .. HOPE! He will never leave you nor betray you, he thinks about you more than there are grains of sand, he knit you together, he LOVES you! and he knows these crazy emotions happen.. but he wants you to HOPE in him. PRAISE! Praise him! (that one doesn't really need more explanation.. pretty flat out there..) HELP! Let him help you, he is so eager to come to your rescue. "MY GOD" -- Let him be your God. Walk with him, talk with him, let him be your friend.. I promise he'll be the best one you ever have.

Thank you, Lord for using David as an example of how you love us even when we make the wrong decisions or don't live up to who we think we should be.  And thank you, Lord for light in the darkness, for your hope.

My God is a vindicator, a helper and a hope giver because God is love.

poemmmmmm

You knit me together to be made to be like you
I'm just a blurry reflection, pretty distorted, too.
But you still love me in all my mistakes
You still heal my heart when I cause my own breaks.
O Lord, how you delight in me.
I love, O Lord, how you fight for me.

I'm growing up but not sure who I am
Sometimes I know the right thing to do, but it's hard to take a stand.
And even when I choose to make the wrong choice,
I can still hear you calling me with your still, quiet voice.

And on those days when I didn't have enough breath to pray,
I didn't say a word, but you stayed by me anyway.
The days got increasingly worse, but you remained my hope
You became my boundary when I started down a slippery slope.

Then it was time for life support, the machines beeping all around
In my distress I cried out for your rescue, and you heard me without sound.
The docs were doing all the could, but lungs they couldn't find
But for my survival, Lord, you kept yourself on my mind.

You didn't let me quit,
Kept my body just strong enough,
And even though I took quite a hit,
Turns out you made me pretty tough.

What was 13 days felt like forever
All the while, we were together
But really, I couldn't handle any more of ecmo and trach,
Please do something!  How much longer would this take?

But then we got the call, and YES was all we could say,
Before we knew it I was being prepped, the lungs were really on their way.
You reminded me of your promises, and how you hold them true.
And now I can finally breathe, and it's all because of You.
O Lord, how you delight in me.


I love, O Lord, how you fight for me.

Rise and shine!

As you can imagine, getting a double lung transplant is a pretttyyy hefty surgery.  Not to freak anyone out -- so if you get freaked easily skip this next sentence.  

My core was literally cracked open.  Two of my vital organs were taken out and replaced. I woke up with 6 chest tubes, and 8 port IV stemming out of my neck, and A LOT of staples holding me back together as if I'd been cut in half, which essentially, I was.  But the point was I woke up.  And JUST like God, He not only held true to his promises, but loves to give in abundance.. and here's the story of post transplant: waking up and how the Lord fought for me.

Post transplant, you're supposed to be knocked out/sleeping for 48 hours after surgery.  I had asked my family/close friends (but really, they are family, too) to read Scriptures and sing praise songs in my room after I was out of surgery -- I can't tell you if they did or not cause I was prettyyyy knocked out haha. At 5AM my mom decided that she was going to go home, shower and rest up a little while because I wasn't even going to be conscious for 2 days.  She and my family/friends went in to see me before she left, my mom told the nurse her plan, and wanting to be reassured said "because she won't be awake for another 2 days."  The nurses response came as a bit of a surprise when she replied "Oh no.  She's already starting to wake. I expect her to be awake by 11 or 12."  And sure enough, 16-17 hours after I went into surgery, I was awake.  When I woke up, I remember asking my the nurse to call my mom, and before I knew it, that cheery, familiar and comforting face like none other appeared in my ICU room.  I told my mom I was bored, I wanted to come off the vent, and I wanted to get up and do something.

27 hours after I went into surgery, the doctors very skeptically let me come off the vent and on trach collar, because after all, I was still supposed to be sleeping. I was allowed to come off for an hour, then was supposed to go back on. But when the hour passed, I didn't want to go back on, and didn't need to.  This pattern of agreeing to go back on in an hour or two but then refusing/not needing to continued through the night.. and I never went back on the vent. 

I. Love. This.

There's nothing that we could do in prep, or during surgery, or afterwards that could make my body heal so quickly like that. 

The Lord holds true to his promises. And gives in abundance.

"The Lord will fight for you, you need only be still." Exodus 14:14

The Lord woke me, kept my vitals wonderful, and made my lungs breath on their own sooner than anyone could have imagined; the Lord blew minds; the Lord fought for me.. because God is love.

THE night.

The man came back and told us, unfortunately these lungs weren't good for me...

----Before I could even begin to feel anything about this, God shielded my heart and the Holy Spirit reminded me -- I AM giving you lungs, don't get distracted like the Israelites, don't trip over the speed bumps because it's just a tactic the enemy uses to divert us from God.. I honestly felt like the enemy was just trying to get in any last stab and jab he could before God rescued me -- because just like the Israelites, God planned on bringing me through the whole time.

Back to the man standing in my room... Before he even finished his whole sentence, his beeper went off and he told us that we had ANOTHER offer - and he was going to leave right now to check them out. He told me he wants to get these lungs for me, but he's not going to accept them just to accept them.. he wants me to have GOOD lungs and with the most seriousness and sincerity anyone has ever spoken to me before he told me "I'm doing my best to get you good lungs."

Again, I went back to sleep -- almost in bliss. You neverrrr hear of people getting 2 offers within the same day.. or at least I never have, and i layed there feeling God in action on my behalf.  I asked God for the nurses to let me skip my chest therapy and physical therapy for that day because it was just so painful and hard to do them, and i felt like why should I go through all that just to get new lungs? I only told this to God and my mom.. and sure enough the nurse walks in and says I don't have to do CT or PT that day. THANK YOU, LORD! I just felt like he was setting everything up to finally finish this, and let me tell you... it was such a nice feeling.

Most of the day went by, and the next thing I know, my nurse Sarah comes in smiling and says -- they're yours. I couldn't believe it! People started flooding my room, detaching and reattaching tubings and machines and IVs and starting me on pre-surgery meds.. it was all so chaotic, and yet all so peaceful at the same time. I wasn't scared at all. It was like I was in this cloud, this euphoria,just watching everyone around me hussle about.. but as for me.. I just smiled knowing I was going to finish the race.. Soon.. I would breathe.  Really the only way I can describe it:  Isaiah 26:3 -- "You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you!" -- I was about to go for one of the most hardcore surgeries there are.. and yet, I was in perfect peace.


They took me out, and I mouthed to my family (minus my dad) "Pray for me" and just layed back and relaxed. I got into the OR and my surgeon was there, which only added to my peacefulness. He stood right infront of me so I could see and hear him clearly. They had to put in an arterial IV before they knocked me out -- but mind you, my veins were basically shot at that point. So I had both my arms stretched out to the sides -- one guy working on gettin an IV in each arm, and two guys down at my feet trying to get a leg IV -- I honestly didn't even feel a thing. Suddenly my Dr. says "Hang on, Emily has to see one more person.." and in comes my dad! He wasn't able to get to the hospital fast enough to see me off, so they found him, literally ran him to the OR prep room, got him dressed and brought him in so he could see and pray with me before i went under. That's the last thing I remember until I woke up..

...with new lungs.

"..But those who trust in the LORD will renew their strength, they'll soar high with wings like eagles, they'll run and not grow weary, they'll walk and not faint." Isaiah 40:31 -- that's the verse God spoke to me when we first started pursuing transplant. He told me "I'm literally going to do this for you."  And the night of July 31, 2013, I got to see the Word of God alive and active (Hebrews 4:12) like I've never seen before.

God put his promise into action and lungs in my chest because God is love.

the break down, the break through.

Not going to lie, the whole life-support time I was a little depressey.  All I could do was sit and think , which is never a good thing for me, and every time something improved, or went well/smoothly.. there was always something else to come right after that was added to the trauma.  I eventually started missing out on the blessings God gave me because I was already trying to brace myself for what bad was going to follow..  NOT the way God wants us to live.. and TOTALLY the way to get depressed -- fast.

I love how God's Spirit lives in me though, not through my own work, but through the grace and salvation of Jesus.  He promised that a Counselor and Comforter would come be with us, and in those moments when I totally lost myself, His Spirit still clung to me and any smile, or hint of joy, was solely His Spirit shining through my darkness. 

Not to toot my own horn or anything, but I think I handled everything relatively well considering the circumstances (again.. only bc of God), but after being on the 3 life supports for 11 days, I lost it.  The 11th night, I just sobbed out to God like I never have and wonder if I ever will again.  Remind you, I couldn't actually make any sounds because of the trach, even crying sounds and certainly couldn't speak -- but that night, I was so upset that there was such a pressure build up inside my body, you could hear me cry, and even hear my words to God.. At that point, I really was neutral about living or dying, I just needed God to do one or the other because I couldn't take it anymore. (not sure if i wrote about this already.. if i did.. my bad!)  And i cried, and cried, and told God exactly how i felt -- I KNEW he could get me lungs, and i KNEW he could even just heal me right there... but he was choosing not to do either and I didn't know why.  I didn't know why he was allowing me to need machines to support me, with seemingly no light at the end of the tunnel getting any nearer. God.. just do SOMETHING!

And that was one of the nights He spoke to my heart again.

So compassionately he said "Just a little while longer.. Just wait until the prayer meeting."

I wasn't thrilled with the answer, obviously, but how could I not calm down when his comfort is so peaceful, and loving, and indescribeable.

2 days later, my 13th day on life support, there was a prayer meeting at two different churches that sought out God and fervently prayed for my rescue, for my relief, for my new lungs.  4 hours after they finished praying, we got the first call for potential lungs.

I KNEW this was the night! It had to be! And surprisingly, I just relaxed and went to sleep while waiting to hear back if the lungs were a good match.  But before I did,  I had to meet an anesthesiologist (did i spell that correctly?), sign some consent forms, and talk to God.  All I kept praying was "God, just like you brought the Israelites ALL the way through when you parted the Red Sea.. bring us ALL the way through tonight."

God put his armor on me that night.  There were so many things worry about including a respone that the lungs aren't a good match for me, or arent good at all (which unfortunately is very common to hear on your first, second and sometimes even more calls for lungs), and yet he reminded me of the Israelites when they were being chased by Pharoah (again.. spelling?).  God intended on parting that Red Sea and bringing them all to safety the WHOLE time!  But they got distracted, took their focus off of the God who just triumphed and demolished their days of slavery, and instead panicked.  THEY caused themselves unneccessary worry.. THEY made themselves miserable, and scared, and put THEMSELVES through a situation, and emotional draining, that never needed to occur because God was going to save them whether they worried or not.. but how much nicer would it be if they had trusted God rather than worried? (although I can totally see why they did haha) And that's what God was telling me and protecting me from on transplant night.  "Don't even entertain the idea that you're not getting lungs tonight" and so I didn't.  I just kept praying "Bring us all the way through.. bring us all the way through.."


It made me so aware that sometimes God's blessings amidst the storm are missed because I stop looking at him.  He brought the peace and calmness and I traded it in to worry.  But with transplant.. he reminded me -- THE WHOLE TIME he knew he was going to bring me all the way through.  The whole time.. even in my doubt, even when it looked reallyyy grim to everyone, even when i wasn't nice to God, he was setting everything up for my rescue.  Know that God is for you.  And know that even amidst the storm, his blessings rain down harder.. but it's our choice whether to get soaked in blessings, or start to drown in wavey trials.. Which will you choose?



"For I know the plans I have for you," declares the LORD. "Plans for good, and not for evil. Plans to give you a hope and a future. In those days when you pray, I will listen.  If you look for me wholeheartedly, you will find me. I will be found by you," says the LORD. "I will end your captivity and restore your fortunes." Jeremiah 29:11-14

God had a plan to give me hope, a future, an end to suffering, and a great restoration the whole time because God is love.

nothing but the blood...

So.. one of the challenges of the ecmo was the it basically took most of my blood out of my body, oxygenated it and put it back.. but I guess because the majority of my blood was outside of my body getting the oxygen, the blood I had left in me wasn't enough.. so I ended up needing a blood transfusion. (Disclaimer: I'm not actually sure if that's the reason haha but it makes sense to me, so that's what I'm going with.)

Needing the transfusion explained my chills, and the reason that I was more exhausted and had less strength than before.  The problems with getting a transfusion:


-- It complicates the donor selection process.. making my donors even more limited.
-- the blood transfusion can't go through my regular IV (my port) so they'd have to access another vein for an IV .. and my veins are tiny to begin with.. and now they are lacking blood .. wasn't going to be good.

So anyway, God is nice (why should I be surprised?) and they numbed up my arm pretty hardcore, and tried to put in a mid-line -- which is basically a sturdier, longer lasting IV -- unsuccessfully.  Then they decided to try to put an IV in my ankle because frankly there weren't a lot of options left to try for.  I laid there trying to hold still the best I could while one of my sisters in Christ held her phone next to me just replaying a God song that really helped to calm me.  (Thank you, Patti!  I'm impressed at how long you could hold your arm up! haha!)  Praying, and singing, and trying to fight off panic attacks, God opened up that tiny vein, and they quickly set up my transfusion, and I definitely felt the improvement of it the next day. 

At the time I was too tired and sick to feel how scary this really was.  I was obviously a priority patient for procuring (getting) lungs for because of how sick I was, and we hadn't received one single call.. not ANY potentials even.. and now we are putting another limit on the lungs that I can receive.. the possibility of getting lungs, at least to me, seemed to just be getting dimmer and dimmer.

Obviously we know that darkness was completely overwhelmed by the Light.  Thank You, Jesus!

Anyway, I needed two blood transfusions -- one before transplant, and one after. Yesterday at the store, the clerk was wearing a shirt that said "donate blood" so I asked him if he had donated blood.  He told me he had and I thanked him, telling him that a blood donor saved my life and I've had two blood transfusions..
This is one of the things that is slowly coming around to me about transplant.  Everything was SUCH a big deal that I'm still just now getting around to feeling the impact and realizing what happened.

A blood donor helped save my life.  I needed blood, and without it, I wouldn't have made it to transplant.  So to all of you who donate blood and take it lightly; don't.  You don't know how much of an impact this simple act has made upon someone -- you are literally donating blood to save lives.  Who knows, maybe it's even one of you who saved mine. All I can say is thank you..

And then I got to thinking even more... A blood donor saved my life.  Jesus is the first blood donor.. I know we hear this cliché all the time haha but that doesn't make it any less true.  Needing transfusions really hit me hard and I am SO thankful for the person who decided to donate their blood one day.. Like really thankful, to the point of tears.  And then I thought..  my salvation is SO much greater than anything on this earth.. this whole situation has made me realize how lightly I take my salvation without even knowing, and how gracious God is to us to not only keep saving us, but also to gently remind us how grand our salvation through Jesus Christ is.. which I still can't comprehend fully.

So thankful tonight (and every night) for my blood donors, and for the very first blood donor.

I've been saved physically through my donor's blood, and saved completely through Jesus' because God is love. <3