A gift

Stacy Kramer, and TED, thank you so much for this.

I wouldn’t change my experience.  It profoundly altered my life in ways I didn’t expect… So the next time you’re faced with something that is unexpected, unwanted, and uncertain, consider, it just may be a gift.

Stacy Kramer, brain tumor survivor, so eloquently told the story I’ve relayed to countless individuals.  I think a lot of us who endure life-threatening illness come out to see what a gift it was.  As I’m sure it was for her too, many of my nights were sleepless; there was a lot of pain. I wondered a million times Why me? How can I get out of this? Please, can someone make this stop?!  But standing on the other side of the whole ordeal, as I am now, it’s so much easier to see how the longest days would make me a better person in all the ways I needed, introduce me to hundreds of people I could learn from or impact, and teach me that there is more to life than anyone ever had thought.

So grateful for my gift.  I wouldn’t wish it upon you (you wouldn’t be able to see it was a gift until it was all over anyways), but I’m thankful to God that he brought my scariest, darkest, most painful experiences into something I’m now so grateful for.  May His light keep shining through the darkness.

Stereotypes and prejudices

There aren’t many things that make my blood boil, but any kind of prejudice or stereotype will.  Especially when it’s indirectly targeted at me.

I have been absent from my posting for a little bit due to the crazy busy (but wonderful) holidays and wrapping up my baccalaureate degree in Public Health with a focus of Education and Promotion.  But I need to say something important right now.

I’m in a writing intensive course where we are to write a lengthy paper on a topic relating a health disparity.  Naturally, I chose “Organ transplantation among socially vulnerable adults.” A peer commented on my topic, and he mentioned alcoholism and drug abuse-inflicted liver transplants and ended his piece by saying, “I personally don’t agree there is a large enough disparity, only because many of these people’s conditions are self inflicted.”

First of all, self-inflicted or not, you still treat a patient.  If you were a doctor and someone came into your emergency room after trying to commit suicide, would you save them?  Of course you would.  I understand the limited number of livers available makes this a little bit more of an ethical question, and I will digress for a moment to say UNOS (United Network for Organ Sharing) and transplant centers have extremely stringent rules for listing an alcoholic for a transplant.  If you are an alcoholic and need a liver, you wouldn’t even make the waiting list until they were sure you were sober with a low chance of returning to old ways.

It is very hurtful when someone holds a prejudice towards you or one of your kind – your race, your health status, your financial situation, whatever it may be.  Our instructor in this course has specifically asked to know about anything being said by our peers that is “uncomfortable” to us, so I wrote her an email to say I was more than uncomfortable.  I am just posting this so that all of you know that people dying of liver failure waiting on organs are not a bunch of alcoholics.  The majority (90%) of us have, or had, diseases that we in no way, shape, or form, have/had given to ourselves.

I’m extremely uncomfortable with [my peer’s] reply to my paper topic idea, health disparities affecting access to liver transplants. He ended his post by saying, “I personally don’t agree there is a large enough disparity, only because many of these people’s conditions are self inflicted,” referring to drug and alcohol abuse.
This is a huge myth. I became sick with an autoimmune liver disease at age 5. I was not an alcoholic; my body simply attacked itself. I’ve done research on indications of liver transplantation, and alcoholism/drug abuse account for an extremely relatively small proportion of all transplants. When I was a teenager (before my transplant in 2010 at age 23), I had an emergency room nurse flippantly say, “Why do you have liver disease? You must have been an alcoholic for years!” I was heartbroken as it was the first time if had experienced that prejudice. Not one ounce of alcohol had touched my diseased liver. Ever.

Maybe I’m overreacting, but I am hurt by my peer, a student in the advanced stages of a health degree, no less, being condescending toward patients with liver disease.
I tried to politely respond and tell him the truth so that he could learn from this experience. I hope we all learn something from this. Preconceived stereotypes are extremely hurtful, and we must be extremely cautious never to have them with our patients/clients.
Maybe you don’t believe this myth about liver transplant patients but you think all people with diabetes gave it to themselves by eating junk food, all the people in that neighborhood are drug addicts, or even that another race is just a little less “worthy” than yours.  Well, I would like to firmly propose that no one should say anything negative about anyone unless they have done extensive research and know it to be 100% true, 100% of the time.  Which pretty much would eliminate any stereotypes because none of them meet those criteria.  And if you can somehow outsmart me and find something that meet those criteria, and want to voice your prejudice, don’t.

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

Gifts, grace & gratitude

When someone dies so you can live, it has a profound impact.

Look at our faith.

God gave His Son to die so that we are forgiven – John 3.16, one of the most popular Scriptures of all time. Yet do we really understand the simplicity and complexity of it? We love Him because He first loved us; it almost seems hard not to. We may feel forever indebted to Him, yet we could never repay the gift. So we try our best to live up to what has been given to us, the blessing and securities of life here on earth, and more importantly, the eternal life we have to come. All because we did nothing, and He gave everything.

After I received my liver August 31, 2010, something similar happened. While this temporal life isn’t nearly as important as the gift of the eternal life and the heaven our Lord has in store for us, I believe it is the next highest gift one could ever receive. Yes, God numbers our breaths, but the gift of life is God’s way of extending them. And what a donor family chose to do for a stranger – someone possibly not even worthy of such a gift – is so selfless. My donor family lost their son and chose to help others through their tragedy. Not much is more beautiful than this. Again, I did nothing and received everything. Perhaps I wasn’t even worthy. What makes one worthy of a second chance at life, anyways? And how to we repay such a gift? Again, I don’t think we ever could.

How undeserving we are of the gifts the Lord gives us, yet how much more grateful are we to realize this?

This is the beauty of grace.

Will you join me on August 3rd in my annual Lifebanc Gift of Life walk/run team honoring our donors, our recipients, and the families that chose to give life? My three-year transplant anniversary is August 31, and this is a milestone. I’ve gone through so much, but I’m doing so well. I savor each day, each new experience, hoping my donor is looking down and smiling. I received one of the most tragically beautiful, profound gifts, and my miracle is my existence. I’m so grateful, and I’m asking you to celebrate with me. Three years… I’m speechless, in awe of sacrifice and providence.

2012 Lifebanc Gift of Life Walk & Run

I humbly invite you to consider supporting my team this year. We have a lot of fun, and the event is so beautiful. You can sign up or make a donation <<right here>>. We are grateful for each and every one of you. You are our friends, our family, and precious strangers who care. You all are my gifts, and I could not have made it this far without you.

Full of love and gratitude,
Amanda

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.

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.

A liver for Chelsea

Chelsea
I learned of Chelsea last week and my heart broke in two reading of her story. I read every page on her website and took in each word.

To refresh your memory, hepatocellular carcinoma, or HCC, is the adult form of liver cancer that my doctor discovered I had in May, 2010, which led me to transplant 3.5 months later.

21 year old Chelsea was diagnosed with HCC at age 4 and was treated with 40 chemo treatments and several surgeries. I don’t know her story in detail, but I’m sure she dealt with much more, including the emotional agony of growing up in hospitals.

Her mother gave her a partial liver transplant at age 7 and it lasted 7 years longer than it was projected (14 total). However, she endured some complications that left her liver damaged. All of the issues had caused strain on her kidneys, and she was forced onto dialysis. She lived at Cleveland Clinic in the ICU for a long period of time as she waited for a rare liver: intact (vs. partial), small (her years of illness caused her to be small), and O- blood type. As I know from my nursing experience, type O isn’t the easiest type to match.

Since Chelsea is my age, with my disease, with a history of several illnesses, and the same transplant team as I have, I felt an instant connection. We share so much in common. I wished I could do something to encourage or help her.
_

My mom was watching late night news tonight, and then there it was – the newscaster said the words “liver transplant” so I instantly looked up. Chelsea’s picture came onto the screen just as they said she lost her battle today. Chelsea had gotten a liver last night and from the times posted on her website, it seems as if her body succumbed during the actual transplant.

Tears came to my eyes, and I gasped. I told my mom the whole story, and she was upset as well. Then she told me how blessed I am.

When people like Chelsea are out there, I don’t feel as blessed. I’m so caught up in the “Why me?” “Why her?” questions. Why did I live through the surgery while Chelsea didn’t? She was a year or two younger than me at the time of her transplant so you’d think she’d have a better chance than me. I was small and needed a rare donor as well, yet I waited only 3.5 months. I never got to that point where I was in the ICU for days like Chelsea, or, like my hospital roommate last month, in end-stage liver failure, full of several liters of fluid that needed drained regularly. Who chooses who suffers most? Who chooses who gets it worse before some kind of intervention – supernatural, surgical, or otherwise?

All transplant patients have unique bonds. We share each other’s struggles and triumphs. We wish we could take the pain from any fellow one, whether we know them or just hear their story. We are all entered – involuntarily – into this club, the Transplant Club, and if death or complications harm any of our brothers or sisters, well that just won’t work for us. We put up a fight because we have been there. The hit is too close to home.

Who chooses who has tragic complications? Why can’t we all triumph through? Why can’t our youngest ones pull through to live happy, healthier lives? Doesn’t it seem obvious?

I’m grieving for a girl who I never knew. She’s my transplant sister, so I love her anyways. I wanted to send her a card telling her my story and how I was pulling and praying for her. I was hoping my story would encourage her to keep pulling through, to give her more hope to keep going another day. Sadly, she’ll never see my card.

Rest in peace, sweet Chelsea. All of your transplant brothers and sisters are crying for you today. We pray for your family and friends and hope even in your death, your story will live on and continue spreading to thousands of people, giving everyone courage, strength, and perspective, inspiring each one to ultimately donate life.