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.

Liver Mamas

“My name is Kai.  My last name is Fairy Princess!” she’ll tell you.  She’s a happy, spunky preschooler.  You’d never know that when she was 4 months old, Kai received a liver transplant because she had biliary atresia.  Her daddy donated part of his to her, saving her life.  Read About Kai on her mom’s blog to get a picture of what a little girl with a life illness is like.  Seemingly healthy on the outside but living a life just like I did at her age – adjusting normal to mean meds, hospitals, tests, procedures.  Growing up thinking that is normal.  Oh, to be that innocent again.  To be too young to realize that your normal is not normal.  Stay young, sweet Kai.  Stay young.

Jasmine, Kai’s mother, keeps a beautiful blog chronicling her daughter’s journey.  I asked if I could share one of my favorite posts of hers, and she gave me permission.  I think everyone needs to understand what mothers/fathers/parents of “sick kids” have to go through.  Now at 24, I’m really realizing that it wasn’t only me suffering for all of these years.  It must have been hell for my parents.  I wonder if some days still are hell for them.  None of us signed up for this, but together, we draw strength, and we get through whatever is coming up next.  I hope you enjoy this post by Jasmine and visit her sweet blog.  I would love to meet the Hollingsworth family one day and give Kai a big hug.

Watch this sweet video of Kai…

Now without further ado, here is “Once a Liver Mama, Always a Liver Mama” by Jasmine Hollingsworth.  I dedicate this to my Liver Mama – you know you’re not alone.  Thank you for always fighting for me and for never leaving my side.  Only a few months until you’ll be a Liver Mama of 20 years.  I love you, Mom.  I wish you could be some other kind of mama, but I’m glad I was blessed with you.  I can’t imagine going through these years with anyone else by my side for every single moment of fear, all of the pain, and even the bright beacons of hope.  We have a unique relationship because of the battles we’ve fought hand in hand for 19 years, and I treasure you all the more for it.

As I sit and keep a distant, online vigil for a baby and a family I have never met, I am forced to reflect.
 
Liver Mommas: We support each other. We share our stories, our joy, our pain, our disappointments, our triumphs, our hope, our advice… But, most of all, we share the experience of having a child with a life-threatening liver disease, more often than not, leading to transplant and the life-long trials and complications that come with that.
 
When someone announces “THE call has come; a match has been found!” We rejoice. Those of us who have been through transplant feel the excitement, the anxiety and the rush of conflicting emotions that we remember from our own experience. Those who have not, I imagine, feel the excitement and hope, fear and longing that goes with the waiting and watching your child grow more ill. 
 
When we hear “There are complications, we need prayers!” We bow our heads and fervently whisper words of love and hope to be carried to heaven, knowing the fear and the way time freezes as you wait to hear that, hopefully, everything will be okay.
 
Sometimes, with a profound sadness that cannot be expressed, we receive the devestating news that a tiny spirit was too great for this earthly world and was called to heaven. Those of us who have never experienced this have a mixture of emotion… grief for the life lost and the family, a desire to reach out to comfort where we know there can be none, a gripping fear in the knowledge that our story could have followed the same path (and maybe still could), guilt that we were “the lucky ones”, and a renewed appreciation for the life of our own children and each day we are blessed to spend with them.  
 
To those of you waiting, we know it seems endless. We remember the hope and we hope with you. To those of you recovering, it’s a long road, but you and your child will get there. One day you will look back at how far you have come and marvel at all that has been accomplished. To those of you who have come out pink and rosy on the other side, we celebrate and cherish each day with you, knowing that tomorrow could bring new challenges and fears. To those of you who have experienced the loss of your precious baby, I have no words of comfort; saying that I’m sorry for your loss does not even begin to adequately cover the depth of my empathy. 
 
I can say this, though: Once a Liver Momma, always a Liver Momma.

Fear of flying / Refinement

Today, I’m sitting in my hospital bed thinking and wondering, dreaming and hoping.  I’ve come up with an idea, a proposition… Bear with me as I get there.

I suppose it’s like the fear of flying.

See, airports aren’t scary, but for some people they facilitate fear just because of their proximity to take offs, landings, and turbulence.

I’m not scared of nighttime, but it facilitates fear because I know bedtime is soon approaching.  It means that soon the people will go away and the quiet will set in.  It means I’ll soon be alone to fend for myself.  Plus, it’s all too clear to me that I don’t sleep well at night, and I have memories of some very traumatic nighttime attacks.

In the same manner, I can say I am not afraid of hospitals, IVs, tests, or doctors.  Even surgery, really.   They just facilitate my deepest fear that I know I’m in over my head with illnesses science can’t even control. Illnesses that prevent me from achieving my dreams, make each day a struggle, and put limits on my life in all sorts of ways. Illnesses that play with my mind, making me worry about where my insurance will come from once I leave my parents’ and what kind of guy would ever want to marry this kind of a disaster. Illnesses that produce hours of phone calls and sorting through bills, dealing with insurance, and filling out forms. Illnesses that easily fill a pillbox full of medications that have taken over my body. Illnesses that self-adjust differently each and every day, illnesses that threaten my ability to make plans.  And ultimately, illnesses that could one day kill me, taking me from the people and the life I so greatly love.  That’s the only thing I truly fear.

But for now, I think maybe my illnesses are like the 6th grade. You have to go – you may not want to but have no choice.  Reluctantly, you bring home new knowledge every day.  You can’t help it.  Fortunately, it makes you a better person as you learn about the world and gain social skills. 

Likewise, I don’t have a choice whether or not to be sick, but I can be grateful knowing at least it’s making me a better person. This lifetime has given me so much love, increased my patience, and given me an empathy most people can never obtain. It’s given me opportunities and experiences that are important to my life and career studying to be a nurse. And most precious to me, it has given me a choice to put my life in the Refiner’s fire as somehow He refines and uses this damaged life for His glory. 

And finally I say, if all of this has been for even one person to know Him, if all of this has been to keep one person afloat, then each and every painful part of it has been worth it.  All 19 years of it.

I can’t get the thought of “Refiner’s fire” out of my mind.  Malachi says,

For He will be like a refiner’s fire. He will sit as a refiner and purifier of silver; he will purify and refine them. 

John Piper states,

He is a refiner’s fire, and that makes all the difference. A refiner’s fire does not destroy indiscriminately like a forest fire. A refiner’s fire does not consume completely like the fire of an incinerator. A refiner’s fire refines. It purifies. It melts down the bar of silver or gold, separates out the impurities that ruin its value, burns them up, and leaves the silver and gold intact. He is like a refiner’s fire.  But it does say, he is like a REFINER’S fire. And therefore this is not merely a word of warning, but a tremendous word of hope. The furnace of affliction in the family of God is always for refinement, never for destruction.

May the crazy miracle of just getting through my days be to the glory of Him who holds my future.  Praise God for the hope of refinement, of our ability to choose to be bettered through the pain and turmoil of this life.

Tonight, tomorrow & the future

Tonight, no sleep will come.

Tomorrow is my one-year transplant anniversary, or transplantversary, and so much heaviness surrounds me.  I cannot keep discerning the good memories from the bad, the blessings from the trials.  It’s all a blur in my head right now, and I cannot find rest.

Tomorrow is also a long day for me at the Clinic.  After the battle of waking up at 5, I have a very important ultrasound and CT scan.  It’s time for my second “tumor marker” labs to make sure the tumor that grew on my old liver hasn’t reappeared on my new liver – or anywhere else, for that matter.  Additionally, as I said in a previous update, my surgeon discovered a major blood vessel connecting to my liver is narrowing.  It could be a temporary thing, or it could be a more permanent danger.  The problem is that while the vessel is narrowing, or constricting, blood cannot access and/or leave the liver without extreme pressure and an increase in liver enzymes.  If the scans show the narrowing is still there, or worse, I will need surgery to open the vein.  

Needless to say, I am done with all this.  I do not want a tumor and I do not want a constricted vessel that needs to be opened.  However, this past year, I’ve really learned how our needs are vastly different than our wants.  

The LORD is my light and my salvation; [what] shall I fear? the LORD is the strength of my life; of [what] shall I be afraid?

Psalm 27.1

…Reflecting on the past, praying for the future, knowing the Hand that brought me through the past 365 days will get me through the next.

Check back tomorrow for whatever I can think of to say on my official Transplantversary.  😉

Soon Friday

Friday’s coming so fast – surgery, again.  Being sliced open and left in major pain, again.

Sigh.

Someone asked me if I was scared.

Of what?

Of dying on the table?  No.  Of the pain?  Scared isn’t the right word.  Of staying away from home, sometimes by myself, for a week?  Yes.  Of being woke up each morning at 5 for labs and residents?  Scared, no, but dreading, yes. Of anesthesia?  Quite the opposite.  Of getting out of bed the first time post-op? Absolutely.

About this whole surgery – it’s weird.  The transplant was sudden, phone-call-at-1:30am type of surprising, so I’m having a hard time knowing what to do with a scheduled surgery.  Most of all, I’m wishing it didn’t have to happen.  Although, I really hope it makes me feel better.  All the doctors say it will.  But once you have staples holding your entire abdomen together once, you never want to go there ever again.

Life as a transplant patient is much different that you’d think from the outside.  It’s much different than a pre-transplant patient could ever understand.  I talked to our Team’s psychiatrist about it and asked her if she finds it common that patients – even while prepared and educated pre-op – can never truly comprehend everything their Team tells them about life post-transplant… if they just can’t grasp it all, whether they are avoiding it or just overwhelmed by the amount of information to take in.  She said she’s often thought the same thing.  It’s just the way it goes.  Then you spend your entire post-transplant life hoping you’ll be one of the successes, one of the 85% of liver transplants that make it, God forbid one of the 15%. You do all you can to prevent rejection and infection, spend all your life coordinating meds, side effects, and regular tests to make sure you’re still in the clear.

As you all know, it’s a game of white blood cells lately, and my WBCs hit 0.8 last week. You guessed it, I was on Neupogen injections (again) all weekend.  My labs just keep getting worse, so the surgery needs to happen now.  For those who asked, I’ll be getting blood transfusions to make sure my levels are high enough to get through surgery.  Even my family seems more worried than I am.  While this will be no fun, I don’t think it is a bad thing at all.

Although I thought that about the transplant…

I will never, ever be the same.  I don’t think it’s my fault, but I know it’s my fate, forever my future.

And while so much is unknown, and there are so many questions to ask… to God be the glory.

Note: Contact information added to link column (top right)  No unexpected visitors, please.

Threats

My Christmas Tree

I packed my hospital bags today… My “day bag” for Thursday’s biopsy/testing as well as my “long stay” bag just in case.

I’ve been through the ups and downs of illness for so many years that I’ve learned to have hope while always being prepared.  Both are key.

As I explained in my last post, my body is rejecting my new liver.  This could be minor, or it could be a big deal.  We won’t know until Thursday.

In an attempt to solve the problem, last week, my doctors added an anti-rejection med that they had previously taken me off of due to side effects.  Apparently, it isn’t working as my labs on Monday came back worse than before.  We are looking for clues on Thursday, despite the fact that one of my lab values might interfere with getting the biopsy done in the first place.  My INR, which measures blood clotting, is 1.5, and above 1.5, the surgeons won’t do the biopsy. Liver disease affects INR values, which is quite possibly why mine has risen.

I was doing great just over a month or so ago.  I was finally feeling energetic after my surgery, and I was impressed how well I felt – better than ever in my life!  Then slowly, I started feeling fatigued.  Next, I was taking 2 naps/day, reminiscent of my life with liver disease.  My abdomen started swelling, and I found petechiae (tiny broken blood vessels) on my skin, again, symptoms of liver disease, symptoms I had almost forgotten about since my transplant. Then I experienced itching, the hallmark of liver disease.  I knew something was wrong, but I couldn’t figure out what.

When my transplant coordinator called me and told me how high my liver enzymes were and how all signs indicated rejection, I knew.  And these symptoms still plague me even as we are trying to properly diagnose the problem and treat it most efficiently.

The disease I had been miraculously saved from just a few months ago, is now apparent again every day of my life.  I know it’s not the same disease – only symptoms of an aggravated liver – but it’s still frightening.

I finally got a new lease on life, a chance to be healthy, a chance to live a normal life.  I fought back from a treacherous surgery as a brand new life dangled in front of my eyes.  I had more energy, clearer thinking, and set up plans for my encouraging future.  Then in an instant, nothing was certain.  Nothing is certain.

Will I be well enough to resume school in less than 2 weeks after all I’ve fought through to maintain my standing?  Will the rejection really go away?  My team and transplant friends say rejection is common in the first year post-transplant, and it’s usually treatable, but this still feels wrong.  

Who gave me this gift of a new life – only to threaten taking it from me?

So what are the treatment options?  If it’s minor rejection, I will get oral steroids at home or a few doses of IV steroids in the hospital.  If my body goes out of control and the IV steroids don’t work, I will stay in the hospital so the doctors can treat me carefully until my labs become stable.  Additionally, the longer my enzymes are elevated up, the bigger risk to my liver it is.

I feel violated, afraid, and unsure.  I’m anxious and reaching a point where I’m tired of pretending everything is still fine.  I absolutely love the holidays, and this year I’ve tried to enjoy them because I have so much more to be grateful for, but this rejection issue has remained in the back of my mind throughout.  Tomorrow night is my big, annual Christmas party, and while preparation has been taxing on my weak body, I’m mentally exhausted as well.  The fear is so present.  Plus, it will be a late night with lots of people to be happy for.  I try to portray a picture of health and gratitude as always, and you all know how much I adore my loved ones, but with all this uncertainty, it’s so hard.  Even my favorite things are becoming hard.  I guess it’s not the first time.

Please pray for grace, peace, and courage.  Pray for good results and quick healing.  Hug your loved ones and be grateful you have them.  I know my mind can go a little out of control, but my worst fear is not being around anymore.  Since I love life more than some people, I feel I deserve it the most.  Is that so wrong?  If only people could realize what they have.

Thanks for sticking around.  I love you all so much.

Amanda

PS – The photo above is of my Christmas tree.  My mom lets me put it in our dining room since it won’t fit in my bedroom.  It’s pink, of course, and I keep only pink/white/silver/neutral ornaments on it.  A lot of my ornaments have very special meaning, and I take great pride in making it pretty every year!  Just wanted to share it with you, my dear friends. 🙂

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