Wait.

Before I leave for Europe, I want to to leave you with this. I found this today, and apparently I posted it somewhere else – just months before I found out I needed a liver transplant.  Today, these words ring so much truer today than when I posted them before.  This is for me and you, everyone out there who is tired of waiting, feels it will never end, and is frustrated trying to see the purpose.

Oh what I have learned in the waiting…

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, “Wait.” 

Wait? you say wait? my indignant reply.
Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I’m claiming your Word. 

My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I’m needing a ‘yes’, a go-ahead sign,
Or even a ‘no’ to which I can resign.

You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I’ve been asking, and this is my cry:
I’m weary of asking! I need a reply.” 

Then quietly, softly, I learned of my fate,
As my Master replied again, “Wait.”
So I slumped in my chair, defeated and taut,
And grumbled to God, “So, I’m waiting for what?” 

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, “I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

I could give all you seek and pleased you would be.
You’d have what you want, but you wouldn’t know Me. 
You’d not know the depth of my love for each saint.
You’d not know the power that I give to the faint.

You’d not learn to see through clouds of despair;
You’d not learn to trust just by knowing I’m there.
You’d not know the joy of resting in Me
When darkness and silence are all you can see.

You’d never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you’d not know the depth of the beat of My heart.

The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that’s beyond getting just what you ask
From an infinite God who makes what you have last.

You’d never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.

Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I’m doing in you.

So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait.

Russell Kelfer, 1980

Thank you to my precious donor family, whoever and wherever you are, for choosing to give the gift of life.  Because of you and your sweet son, I am fulfilling my dreams all around the world.  My heart is swollen with gratitude; I could never find the words to express it.

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The waiting list

The Waiting List is an amazing website/project. It’s goal? By sharing the stories of people whose lives have been impacted by organ donation, our goal is to inspire the 65% of Americans not registered as organ donors to make the commitment for this final act of kindness.

What a huge goal, but also, what a deserving one.

The Waiting List

Their first photo project was How many pills do you take?

Waiting List - How Many Pills

So for whomever is interested or can in any way be impacted by this, here are the pills I currently take in one day, but I see it as a small price to pay for these 86400 seconds I had the opportunity to experience today.

Such a very, very small price to pay.

Pills

2 months and 10 days

Did you know I’ve been on the UNOS Region 10 A-positive (blood type) waiting list for 71 days now?  

At first the doctors said “We’ll have you transplanted in 2-3 months.  Quit school.  Don’t work.”  I panicked; I’d be behind.  I need an income, plus I love my kids.  And how was I going to be emotionally ready for this huge life transition in only a matter of weeks?  Then I packed and read “The Binder.” (The overstuffed Liver Transplant binder the Clinic compiles and makes you read every word of)  I dealt.  I joined our local TRIO, a support group.  I met friends online, even found a couple girls my age who had just had transplants and were now working as RNs – coincidentally just like I hope to be.  We got the tumor, and we don’t think the cancer spread.  The doctors say I have a poor quality of life so I need a new liver, they say I’ll have more energy than I know what to do with, but is that really possible?  It scares me a little.  This is all I know. I do the best I can and take each day at a time, as it comes, embracing it for the strength God gives me or the things I can find to do to keep busy.  

Now, 71 days l later, I am weak, bored out of my mind, and I am tired of filling my schedule with trivial things, shopping which gets me into trouble, and organization projects which I guess are good, and a Netflix membership to pacify this unbelievable boredom.  I have all the time in the world, yet lack the strength to do it.  I’m 23, I should be in the beginnings of a great new job, working on building a family, watching the dreams I’ve worked so hard to achieve, come true.

I don’t want to stir anything up, but I think kids and young adults needing organ transplants – if we ignored severity of disease and risk of not having a transplant – should get extra “points” just because everyone else is old enough to already have a life, to already have a career, to already be married with kids, and sure those things may seem to make the process harder, but they’ve lived their life.  They know if they achieved their dreams, they saw their hard work turn into a good life.  But us?  We’re only getting started.  We had to push pause on every hope and dream we were stoically fighting for, never really knowing if we’d ever get “there” or not, while the rest of you already know.  I’d rather go through this with a husband and a family and a career than not knowing if I’ll ever have those things.  And of course both options are stressful.  But right now I’m having a hard time with things.  Not knowing if I’ll be able to go back to school in the spring.  Not knowing if I should take these nursing textbooks to the basement or if I’ll need them soon.  Not knowing if I’ll get my surgery early enough to take a nanny job in both November and February that I’m really looking forward to.  Just not knowing … going from having a huge future at my fingertips to not knowing when I’ll even have a major life-changing surgery.  Will I get a phone call, the phone call in the middle of the night?  Or will it be during the day in November.  Will it be snowing outside?  Will it be that far from now??   

But you know what, if there’s anything I am, I’m a fighter.  Anyone who knows me knows that you might get a few meltdowns and tears, but underneath it all, I’ll fight for what I know is right with everything I have.

That said, I talked to my social worker on Monday and she said out of all the lists for all the organs and all the blood types, I am the smallest person registered, and therefore I need a small liver, which I’ve told you before.  The tumor rules out a living donor liver, so I’m stuck waiting for some precious individual – just my size – to die and give me their liver.  It’s morbid, but it’s how the process works.  I asked her, “Honestly, how often do you see these small livers?”  She explained that most of their liver patients aren’t that small in the first place, but she wouldn’t be surprised if it took up to a year for one to surface, although her hopes is that the little liver is here by the end of the year.  I liked 2-3 months better, but now it looks like I could be living in limbo a handful of extra months.  And that’s a lot of added stress, worrying, and unknown.  So 2011, tomorrow, we really don’t know.

And those asking about my MELD score – it’s 22 and will go to 25 in 2 weeks, but at this point, my MELD is irrelevant because I’m #3 on my blood type list, and #1-2 are Status 7’s which means they’re too sick to be transplanted right now anyways, and my social worker shared with me that they are completely different sizes than me, so there is no competition.  So basically, the first little liver in Region 10, barring another hospital taking it first, is going to be mine.  (This is where being at the largest volume transplant center comes in at my advantage.)  So, we just might have to wait a little longer than I thought.

Please join me and pray this liver comes soon.  My social worker is hoping for a “busy holiday weekend” on Labor Day since deaths on summer holidays skyrocket, but rather than pray for that (it’s a little too specific for me to pray for people to die on a certain date!) just pray the perfect liver gets to me soon.  Pray for peace in my heart and grace in the waiting.  The unknown, the day to day not knowing is getting so hard.

I love you all,
Amanda 

2010 Lifebanc Gift of Life Walk/Run

What a wonderful day!  I coudn’t resist but to vlog about it, so here I am telling you about the LifeBanc Gift of Life Walk/Run, waiting for my liver, and some other things.  For those who were at the race and want to download the photos, check out my Flickr page.  🙂  xoxo

If you can’t watch the video, here’s the transcript:

Each state, or many areas of larger states, has an organ donation and procurement agency which promotes organ donation awareness, assists UNOS in organ procurement, and is an asset to both donor families and recipients.  I became involved with them last year, became trained as an Ambassador, but was never healthy enough to run any events.  I promised them after my transplant, I’d get going in health fairs, school classes, helping any way I could, and it is my very intent to.  The organization is a HUGE reason getting a liver is possible for me.

Today was the 12th annual LifeBanc Walk & Run, 2010.  Seeing I’m an active participant in this organ donation process (whether I like it or not) this summer, I figured a good way to spend my time would be to organize a team and raise money for the organization that is so dear to my heart.

Today, I saw the efforts of myself and thousands of others come into fruition, and we had an absolutely wonderful morning.  

Thank you from the bottom of my heart to those who personally joined my cause.  Thank you to my parents, sister, Meg-O, Dave, Lydia & Dawn Weissling, Lydia’s friend, Paula Balazs, Ryan & Kelly Jacops, parents of two angels I sit for, an old friend Sarah Walker and her sister Lisah Franklin, my Uncle Kirk, and Heather & Hailey (TRIO member Ray Golden’s daughter and granddaughter) two of my new friends at TRIO (Transplant Recipients International Organization).  Thank you for joining a team that started out with one participant with a single goal of furthering organ donation in our area.  Thank you for paying the entry fee and then showing up and actually walking (or running!) to show your support.

To many of my loved ones, many people I don’t even know, I humbly thank you for your donations.  To my Uncle Keith, Paula Balazs, the Meachams, Selena Inouye, Janet Goodwin, Panther Expedited Services, Inc., Uncle Tim & Aunt Linda, Sandra Jones, John Stucky, Lynn Eckelbecker, Stewart Witt, Rocco Surace, Chris Carrigee, Karen Studebaker, Marci Eversole, and my Aunt DiAnn. 

Thanks whose who sacrificing your money and in all, helping me raise $1,345 for LifeBanc.  Your amounts – small or large – made sure you were part of this Team, whether here or in spirit.

Thanks to all of you who wished me well, said you wished you had the money to donate or participate, or said you’d be thinking of Team Race for Amanda on Race Day.

Thanks to everyone who cheered loudly, or in spirit, when the LifeBanc announcer read off the roster, “Team Race for Amanda!”

I may have gotten winded (a mile is hard for me these days) and for walking long distances like the Cleveland Clinic, sometimes I need a wheelchair, and yes I usually need a cot to lay on at church, but today, I walked my 1.5k and I walked it well.  I’m proud of myself for trying such a daunting feat for someone in liver failure.

But enough about that….

In my heart and soul, I can now get my liver.  My last “big event” of the summer is over, and it was amazing.  Honestly, I never even thought I’d make it through mid-July, but here I am, still waiting.  Right now, I am at peace with each day God has given me, and I feel so uplifted and supported even though I do question where my liver is. I feel I’m ready to go with this.  Please pray my trial maintains a steady pace with no unforeseen challenges, and pray that the Lord brings me out safely.  Pray my journey is one of hope and healing, that I will come out on the other side ready to soar.  Pray that I encourage every soul I pass.  And-  Pray for a “little” liver just for me.

Thank you to everyone who is holding my hand along the way.  I love each and every one of you.