Fear


The only thing to fear is fear itself.

Franklin D. Roosevelt

So true, but also frustrating at the same time….
 
I’m writing this for a friend as she hosts the blogosphere’s “Patients for a Moment
blog carnival for this month.  The topic is identifying fears in chronic illness and strategies to overcome them, so this is my story of when fear has come and what I believe is the best way to combat it.  Welcome if you’re visiting.  This is my liver transplant journey blog, and you can visit my personal blog over at This Crazy Miracle Called Life.  🙂

Anyways…
 
Here’s how it all began.


Almost 18 years ago when I was five years old, I developed some alarming symptoms.  Undergoing every medical test known to man, I met fear, true fear, for the first time.  When they drilled into my hip for a bone marrow aspiration, I’m not sure who screamed louder, me or the young mom throwing up in the bathroom once hearing her firstborn’s shrieks of pain.

Fear. It’s a pretty powerful thing. It can ruin lives, split families, and rock the world. 

When I was finally diagnosed with liver disease, there was a new fear we had to wrestle with. What would this new life be like? Each specialist visit came with a load of fear – would things be worse? At some times, we wondered if “worse” was even possible.

Then came the hospital visits and seemingly constant liver biopsies. Far away in the hospital I’d lie, an hour away from my friends, my school, field trips, my dog, piano lessons, family vacations and holidays… and whatever resemblance of a childhood I had left.  

There’s fear in loneliness. 

The distance from home, the machines, the beeping and noises, the people constantly poking and prodding, the food, the smells, the atmosphere… it was all petrifying. And when I wasn’t in the hospital, at an office visit, getting labs drawn, or in an MRI machine, there was always the fear of the next appointment on the calendar. What if?

As the years passed, the fear didn’t subside. Fear is an inseparable friend to any chronic, progressive illness.

As discussion of a liver transplant slowly arose, we realized things were out of our control. 

On a visit to my specialist a few days before Christmas one year, she told me it was time to start thinking about a transplant.  I had gone to the visit alone and could barely make it home.  I drove onto the turnpike like a zombie, and rain started to fall as the sun set.  Before I knew it, fear had me on the side of the road early that December evening, screaming and crying to God, “I can’t,” over and over again, a broken record playing through those gut-wrenching sobs that make you want to vomit.

My mind raced back to a decade prior.  Then I remembered, fear makes you fall to the floor and scream to God to take you home, to end the pain.  I quickly forced those thoughts out of my head and feared for even thinking them.

The next few years felt like journeying on thin ice. Just when would I need this looming transplant? 

Wasn’t the car wreck I endured in September, 2007 enough?  It added back, neck, nerve, mood, and sleep issues to my already failing liver – reeking havoc on my body.

There were new fears, like would I ever be able to work?  How could I learn to function in that condition?  Will this ever improve when the doctors can’t pinpoint a diagnosis, when they’re throwing out random medications just trying to ease the pain, trying to lift a symptom or two?

Spring of 2009, my doctor decided my quality of life was worth a transplant. Insurance denied. My doctor appealed. Insurance refused. Now what? A sigh of relief – a life of illness that you’re used to is a lot easier than a major change of plans with a surgery to take it all away, only providing a new kind of specialist visits, tests, and meds.  Trading a terrible, sick life that you’re used to and an expert at managing for a new life that is all uncharted territory? Talk about fear. So while upsetting, I was almost happy about the insurance’s denial.  Yet there was still fear for the future. 

At the very end of May, 2010, about a year later. I came back from a fun trip to Disney World, went to my pre-scheduled ultrasound and MRI the next day, and found out the following day that not only was my liver just as bad, but it was now growing an inoperable tumor.  Our only option now was transplantation. We were on a different insurance plan, and everything flew through before we even knew what hit us. What a jolt. A tumor, the “C word,” it doesn’t get much scarier than that. Add in being listed for transplant within two weeks of the tumor’s discovery, June 14th, having completed a long regimen of pre-transplant tests and clearances, and this was a roller coaster ride we prayed (begged) would just stop.


The doctors estimated 3 months until transplantation, but they couldn’t ignore the tumor until then. The answer? Chemoembolization after consults in interventive radiology and oncology. Hearing a cancer diagnosis or seeing a cancer specialist is one thing I think we all hold our breaths and hope will never hit our lives. The oncologist prescribed the chemo, and the interventive radiologist sent me to the OR where he fed it to the tumor through a vein. The excruciating post-op pain, the wondering if it would be a success, all the new doctors and hospitalization? I was so afraid.

Then came the waiting. Don’t leave the house. Keep your cell phone on at all times. Have your bags packed. “We have no idea when a match liver will become available. No summer vacations or even daytrips allowed. Quit school. Quit work.” Life became a 3 month waiting game with no known end. I went to sleep each night scared to death I’d get the call that meant I’d have to rush to the hospital for major surgery.

I’d have dozens of staples. I’d have a breathing tube, drains, and multiple lines. I’d be in the hospital for a long time. I’d be in a lot of pain. I’d be on new meds which would be difficult to adjust to. I’d have 3 months of healing. If the surgery happened too far out, I’d miss fall semester, or worse yet, spring semester. I already had to cancel my summer schedule. All of these things were part of the plan. But when? No one but God Himself knew the answer.

Literally losing all control and living at the mercy of the unknown is one of the scariest feelings you can have.

Then came the phone call on August 31st in the middle of the night. The adrenaline of rushing to the hospital, wondering if this was it or if it’d be a dry run… it was all no match for the fear of what was coming.  This was it.

That was it.

After an 8 hour surgery, I was and am a new person trying to cope with and heal from whatever just happened to me in a blink of an eye. I had to learn to walk, move, sleep, and eat again.  I am learning the transplant was not my ticket out of the medical system but my ticket right back into it.  I’ve had 2 fearful complications and often  fear the possibility of rejection.  I sometimes fear the future – how well will I actually feel?  What if this, what if that?  What does my future hold?  I can’t undo this transplant, and how much longer will I regret it?  They say not long, but that in itself is fearful.  My life is different now on so many levels.

And today, although I try to think of how far I’ve come and how strong my God is, there’s still plenty to fear.  Like, what if my incision never heals? What if my body decides to reject this new organ? What if I get an infection as I’m on immunosuppressants? What if the pain never stops? What if there are other complications? What if I take too long to heal and have to miss yet another semester of school? What if I am actually healthy? What will that be like?

The unknown terrifies me, absolutely captivating my being at times.

Until I think…

Why can’t I know my incision will heal, forget about the rare chance of chronic rejection, be proactive yet fearless about infection, and work on other ways of dealing with the pain?  Why can’t I positively think of my future, predict no complications, and why can’t I really believe I’ll be back in school on January 10th?  Why can’t I be excited about being healthy soon?  Maybe because I have no idea what that will be like.

Aren’t those thoughts better?  Wouldn’t a lifestyle of thinking that way be the better way to live?

Of course it would be, but this is life, and life gets hard.  Stomachs tighten, hearts beat faster, and minds race.  But the key to all of this, the balance I cherish, is knowing – if I am overwhelmed, I know where to bring my heart and mind.


To the One who holds my life, my dreams, my future.


From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I.
Psalm 61.2 


For I know the plans I have for you, declares the LORD, plans to prosper you and not to harm you, plans to give you hope and a future. 
Jeremiah 29.11

Fear thou not: for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness. 
Isaiah 41.10

For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.
2 Timothy 1.7

These things I have spoken unto you, that in me ye might have peace.  In the world ye shall have tribulation: but be of good cheer; I have overcome the world.
John 16.33

God is our refuge and strength, a very present help in trouble.  Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Selah.  The Lord of hosts is with us; the God of Jacob is our refuge.  Selah.  
Psalm 46.1-3,7

Listed.

So I got it, my 217.

Right at the start of Week 3.

This morning, my transplant coordinator Amy called me to let me know UNOS approved me and I had been officially listed.  According to the UNOS data, I estimate I am 217 on the CCF’s liver waiting list (of all blood types)

Listed.

So many thoughts run through my mind as I try to grapple this new point in my life.

This is the real thing.  This could happen any time.  I’m on the list.

I asked Amy where she thought I ranked on the list, and she told me my MELD was 22.  At the current time, only 2 people with my blood type had higher MELDs than me, yet several were tied at 22.  A blessing and a curse, I can only get a liver from a smaller donor since I’m so petite. My coordinator Amy has been doing this for a long time, so I trust her when she says I’ll get the phone call anytime in the next couple months.  

But I’m listed now, so our backs are packed, cell ringers turned on high.  This is a reality.

As for God, HIS way is perfect.
Psalm 18.30

Dear Heavenly Father,

We come to you this summer morning and ask your peace come upon us.  Clear the confusion in our minds, ease the questions that throb throughout our souls.  Help us to realize that you are holding us in the palms of your hands, and we are not going through this alone.

Give us guidance and grace, love and humility, and help us shine our lights for you to whomever we come into contact along this journey.

Give us courage to fight through this; give us persistent vision of the victory we know is at the end of the road.

It is an honor to be in your army.  Your guidance, wisdom, and provisions are indescribable.  Let gratitude dwell always before us.  You are worthy.

Amen

The End of Week 2

Thursday night, my coordinator called me to say they forgot to schedule an electrocardiogram and the only opening was Friday AM at 8. We had no choice but to go up to the Clinic for what felt like the 12th time in a week.

Pictures, blood flow, sounds. They had their study… “Great images,” the tech told me. Next, a nurse injected contrast and confirmed what we’ve known to be true: pulmonary AVMs, secondary to portal hypertension. No surprise here. After that, we went home, anxious of what the CCF Transplant Team would decide in their meeting later in the day.

Later in the afternoon, Amy, my coordinator called and relieved us by saying my case was approved by the CCF board. Once the Ohio consortium and my two insurance companies agree – hopefully next week – I’ll be officially listed on “the list.”

Only one outpatient surgery and one inpatient treatment remain.

The rest is unknown. Well, the stuff that matters at least.

Thank you for your prayers, love to you all!

Reality… & Acceptance

Today began well and ended poorly.  I think I’m into “reality” mode and this is all becoming so real.  As I lose each and every part of my life as I put education, jobs, and plans on hold, I realize I have nothing but a bad surprise out there in the air.  I can’t plan around it since it’ll be random, completely unknown when my life changes.  I can’t try to plan sort-of around it, because it’ll be random, a date off in the distance.  I can’t pretend to keep all my neat, Coach datebook meticulously in order because well, it’ll be random when my life changes forever and all my plans are put on hold.

Right now, my schedule exists of doing any thing I can with friends or family, a lot of resting, and going along with any appointment my coordinators schedule for me.  Other than that, I’m bored, lonely, and scared of the unknown.  I’m too weak to do too much, so sometimes that hinders the already frustrating.

I spent a good portion of the evening crying on the phone with my mom and letting a friend calm me down.  I’ve fought so hard, so long.  I’m so tired.

My sweet “nanny family” surprised me today with Main Street Cupcakes (mmm!), a beautiful photo albums with pictures, each with a scripture, and a sweet chalkboard and ribbon flower pot with a beautiful fuchsia flower growing out of it.

I just had to share this part – I was eating lunch with the two year old and just out of the blue, she says, “Miss Amanda, are you sick?”  She looked so confused, and I was caught off guard.  I caught my breath and remembered her mom telling me how they prayed for me in their bedtime prayers, so I said, “Yes, Laney, I’m sick.”  Next, “Does you have a boo boo?”  I told her, “Yep, something is wrong inside Miss Amanda’s tummy.  But don’t worry – Jesus and the doctors is going to make it all better.”

I sent a letter to all of my babysitting parents to let them know I’m taking an official leave until I’m recovered.  I’ve received a lot of love and support from them, and if they’re reading, thank you.

Amanda

As for God, HIS way is perfect.
Amen