Life with a Liver Transplant (Featured Interview)

My transplant sister Jewel features individuals with health obstacles and shares their stories on her blog, Jewel’s Kidney. She was sweet enough to share my story a couple months ago, and I’d love to share her site and the interview with you here. If you enjoy my blog, I know you’d love the stories on her site as well.

Life With… A Liver Transplant by Jewel, featuring Amanda Goodwin

Welcome back to “Life with…”.  And y’all, this is a good one.  Amanda’s story is incredibly inspiring. Going through her interview I laughed, I cried, I shouted “AMEN,” I nodded in agreement and at the end, I smiled. I love hearing these types [of] stories, reading about the battles fought and victories celebrated in this war against chronic illness.  And Amanda is a true warrior.  And if  you don’t feel amped after reading this then, I don’t know what to tell you.  So, without anymore rambling from me, meet Amanda!

Amanda Goodwin, blogger at “Crazy Miracle”

In one sentence, who are you?

A passionate dreamer who loves life, loves people, and is grateful for every part of my story.

What are you passionate about? 

I’m passionate about my hopes, my beliefs, my loved ones, making people feel special, traveling, and learning new things.  I love doing anything and everything with my fiancé and planning our spring, 2015 wedding. I also enjoy reading, getting crafty, and snuggling with my 9 pound dog, Haylie.

Tell the readers a little about your disease/ailment/illness/syndrome/healthannoyance, and what it was like when you were first diagnosed.

I was diagnosed with Primary Sclerosing Cholangitis, an autoimmune disease affecting the bile ducts and blood vessels in the liver, at the age of five in the early 1990s.  It was so scary because not only is this liver disease so rare, but I was only five years old and had no idea what was happening to me and why I was enduring so many painful procedures and treatments in the hospital.  I didn’t know why I had to miss a lot of school for doctors’ visits and hospitalizations, or why I couldn’t play rough sports with the other kids in gym class.  Thankfully, the disease stayed stable for years, and when I was 22 years old, my doctor found a tumor in my liver.  We were very afraid because this diagnosis necessitated a liver transplant, one of the most complicated surgeries of modern medicine.

Additionally, I was diagnosed with fibromyalgia in 2011 after a car accident in 2007 left me with severe, chronic pain.  Just this year, a rheumatologist told me that I’m also developing an autoimmune form of arthritis.  While it’s never exciting to receive diagnoses like these, it is sometimes comforting so that you know you’re not suffering with random pain without a cause.  Once you identify your disease, you are much more able to find helpful treatments and medications.

People with a chronic illness face a lot of challenges (A LOT)!  What’s one challenge that you’ve faced so far in your journey and how have you dealt with it?  

Physically, the chronic pain makes every day joys hard.  For example, I was on vacation last week, and standing all day in a museum or walking around the city would wreak havoc on my back, sending it into spasms for the rest of the day.  I would love to live just a few days without any pain and see how many things I could do!

Emotionally, fear has been a huge challenge for me.  When your health is always on the line, it’s easy to fear the “what ifs.”  I’ve cherished my Christian faith and my amazing support system as both have helped me stop dwelling on the future.  Also, cognitive therapy and medication has helped immensely, especially during painful or stressful times.

Who or what helps you make decisions about your health?

I have a background in nursing and a degree in public health, and when combined with 22 years of chronic illness, I have a great grasp on health in general.  I try to use natural methods when possible (such as rest, massage, or heat instead of pain medications, essential oils for simple ailments, etc.) and I avidly study treatments and conditions in scholarly publications to evaluate the research before beginning any treatment or having surgery.  I have an amazing team at the Cleveland Clinic who has taught me so much about my various health issues and consistently offers me all available treatments, and we go with what I think is best for my body along with each individual doctor’s recommendations.  I take great care to choose doctors who are well-versed in my specific illnesses, and they prove to be gold mines of information.

What was your transplant surgery like?  

The surgery itself went well, but the recovery was unlike anything I could have ever imagined or expected.  It was physically and emotionally challenging. If I knew what recovery was going to be like, I don’t know if I would have been strong enough to go through with the surgery.  I probably would have been too scared, especially now that I know the pain and complications that the surgery would entail.  My surgeons were truly gifted, but simply because of the complexity of a liver transplant, it was a long, arduous road.

What has your life been like since you had your transplant?  

Since I had liver disease 18 years before my transplant, I was always used to having a low immune system and balancing life with high levels of fatigue.  I was also used to taking medications and learning to listen to my body and rest when needed.  These things have continued to help me live the best life I can live since my transplant. Various complications occurred within the first few years after my surgery, and we had to finish all of my surgeries with reconstructive surgery due to the battlefield that had become my abdomen, but I take most health trials in stride because I’m so grateful that I’m alive with a beautiful, healthy liver.  And once you live through a transplant, I feel like everything else pales in comparison.

I have a ton of funny and memorable hospital stories.  Can you share one of yours?

Not sure if I have any funny stories, but definitely memorable ones.  Instead of seeing the transplant team, I now just see one of the surgeons because my case has gotten so complicated.  He’s one of the best in the world.  I had a full splenectomy a year after my transplant.  I was absolutely petrified of getting my surgical drains taken out because, well, unless you’ve had it done, I don’t even know how to describe it.  It feels like someone is pulling a snake out of your abdomen as it grazes all of your organs on the way out.  When it was time for my drain to come out, my experienced surgeon started having a conversation with me and engaging me in questions.  He carefully started pulling the drain while I was mid-story, and before I knew it, it was out!  I love him so much, for many more reasons than this.

What advice do you have for other people, young or old, who are waiting for a transplant?

Rally support.  Join support groups.  Ask your social worker to help you get in touch with other transplant patients so they can share their journeys with you.  Write down your questions, and get answers.  Get your family and friends on board because you are going to need all the support you can get.  Realize that recovery is hard and you are going to need help doing basic things for awhile. If anyone offers to help you, take them up on it.  Also, prepare mentally that recovery will be hard, but know you are strong enough.  Having a will to survive is critical. There are special things after a transplant that will affect your life (such as being on immune compromising medications) but you will get used to them sooner than you think.  You CAN live a great life once you get past your limitations.  You are receiving the GIFT of life itself, and that alone is worth all of the struggle or lifestyle changes you will be making.

And finally, what brings you joy?

Being alive.  Hearing other people’s stories.  Showing love to those who need it most.  I feel like I’ve been given a second chance at life for a reason, and I try to live my life in a way that would honor my donor and make my giving heart content.

Thank you so much, Jewel, for getting the word out about life with a liver transplant.  Organ transplants – as Jewel knows because she received a kidney – are amazing, life-saving gifts, and the world needs more people to choose to #donatelife!

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Second wind

Go download Eve Ensler’s new book, In the Body of the World: A Memoir.  Like right now.

Profound.  I recommend this work of art to anyone who cares about or is involved in suffering, the human race, or understanding what life really means.  Eve recounts her story of having to stop her life-changing outreach work to deal with cancer, and she beautifully tells of what she learned in the process.  This book is about the big picture, and how we and all of our sufferings are all interwoven.  I read it in three days – could not put it down.  Savor these words from her book:

Having cancer was the moment when I went as far as I could go without being gone, and it was there, dangling on that edge, that I was forced to let go of everything that didn’t matter, to release the past and be burned down to essential matter.

It was there I found my second wind.  The second wind arrives when we think we are finished, when we can’t take another step, breathe another breath. And then we do.

…Sometimes late in the day… a wind comes, a delicious, clean wind.  I believe in wind.  It pollinates and moves things around.  It can cool us off.  It can make electricity.  It can scatter seeds.  It can become a hurricane or a tornado or typhoon.  It can rustle the leaves.  It rises up and it can help us rise up too.

What does it mean to have a second wind, a second life?  It means screaming fire when there is a fire.  It means touching the darkness and entering it and tasting death in the earthquake scar down the center of my torso, in the first scan that announces the chances are good it’s in my liver.  I am burning because the second wind is also a fire that will burn through our fear.  We cannot be afraid of anything, not of anything.  There is no one coming but us.

The second wind is not about having or getting or buying or acquisition.  It is about giving everything up, giving more than you thought you owned, giving double what you are taking.

What is coming is not like anything we have ever known before.  Your dying, my dying is necessary and irrelevant and inevitable.  Do not be afraid, no, death will not be our end.  Indifference will be, disassociation will be, collateral damage, polar caps melting, endless hunger, mass rapes, grotesque wealth.

The change will come from those who know they do not exist separately but as part of the river.  If you want to overcome your sickness, reach out to someone who is sick.  If you want to forget your hunger, feed your friend.  You worry about germs and stockpile your herbs, but they will not save you, nor will your fancy house or gated villages.  The only salvation is kindness.  The only way out is care.  

The second wind will come from the ground, the Earth.  It will rise like a dust storm.  It will suddenly appear from the corners and the barrios, the favelas and the invisible places where most of the world lives. Because the streets are alive… this wind will take everything away. 

And those of you who can live without will survive.  Those of you who can be naked, without a bank account, a known future, or even a place to call home.  Those of you who can live without and find your meaning here, wherever here is.  Knowing the only destination is change. The only port is where we are going. 

The second wind may take what you think you need or want the most, and what you lost and how you lost it will determine if you survive.

I have lost my organs and at times my mind.  I know it is a race now between the people who are helping themselves to the Earth, to the loot, and the rest of us.  I despise charity.  It gives curbs to a few and silences the others.  Either we go all the way now or there is no more way.  Who will step off the wheel?  […] The world burns in my veins, just like chemo did only a few months ago.  I dare you to stop counting and start acting.  To stop pleasing and start defying.  I dare you to trust what you know.  The second wind is beyond data.  It is past pain.  It is found in the bloodstream and cells of the women and men who purged the poison of their perpetrators, who walked through the cancer, the nightmares.  The second wind is coming from your body, it’s in your mouth, it’s in the way you move your hips.

Every vision is necessary now.  Ever instinct must be awakened.  The wind does not turn away.  It blows through everything.  Do not be afraid.  There is no more winning and losing.  We have already lost.  Even the so-called winners feel that way.  That is why they can’t stop self-destructing.  Step off the wheel of winning and losing.  Of course there is risk.  Of course it is dangerous.  I wish I could make this easy for you.  I wish I could tell you there is nothing to lose.  Lose everything.  That is where it begins.  Each one of you will know in what direction you need to move and who to take with you.  You will recognize the others when you arrive.  Build the circles.  Listen to the voice inside.  And… stay tight in your circle.  Dance in the circles.  Sing in the circles.  Join arms in the circles.  Surrender your comfort.  We must be willing to go the distance.  We must be willing to leave the kingdom and surrender the treasures.

We are the people of the second wind.  We, who have been undermined, reduced, and minimized, we know who we are.  Let us be taken.  Let us turn our pain to power, our victimhood to fire, our self-hatred to action, our self-obsession to service, to fire, to wind.  Wind.  Wind.  Be transparent as wind, be as possible and relentless and dangerous, be what moves things forward without needing to leave a mark, be part of this collection of molecules that begins somewhere unknown and can’t help but keep rising.  Rising.  RisingRising.

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.

All happiness

“If anyone would tell you the shortest, surest way to all happiness
and all perfection, he must tell you to
make a rule to yourself to thank and praise God for everything
that happens to you.

It is certain that whatever seeming calamity happens to you,
if you thank and praise God for it,
you turn it into a blessing.

If you could work miracles,
therefore, you could not do more for yourself
than by this thankful spirit.

It heals and turns all that it touches into happiness.”

–  William Law in A Serious Call to a Devout and Holy Life

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.

Seeing God’s back

Author Ann Voskamp’s blog and book One Thousand Gifts (New York Times Bestseller) has often been a hope to me on long days and an ever-present reminder on all of the rest.  She challenge readers to be grateful for every moment with “a dare to live fully right where you are.”

No matter how dark that place is.

I was reading one mother’s account of losing her daughter at 18 weeks gestation.  Her thought-rendering words express such emotion, such grief, and in her blog entry, A Star Hung on My Soul Sky, she shares a comment Ann posted on her blog.  Once again, Ann’s words move me exactly where I am in my life right now, exactly as I am in this moment.  I pray they will move you as well – wherever you are, however you are, even if you are glancing up right at God’s back, crying to see His face.  God’s in the tremors.  Read…

In time, years, dust settles.

In memory, ages, God emerges.

Then when we look back, we see God’s back.

Wasn’t that too His way with Moses? “When my glory passes by, I will put you in a cleft in the rock and cover you with my hand until I have passed by. Then I will remove my hand and you will see my back” (Ex. 33:22).

Is that it? When it gets dark, it’s only because God has tucked me in a cleft of the rock and covered me, protected, with His hand? In the pitch, I feel like I’m falling, sense the bridge giving way, God long absent. In dark, bridge and my world shakes, cracking dreams.

But maybe this is reality:  It’s in the dark that God’s passing by. The bridge and our lives shake not because God’s abandoned, but the exact opposite: God’s passing by. God’s in the tremors.

Dark is the holiest ground, the glory passing by.

In the blackest, God’s closest, at work, forging His perfect and right will. Though it is black and we can’t see and our world seems to be free-falling in and we feel utterly alone, Christ is most present to us, eye beam supporting in earthquake. Then He will remove His hand.  Then we will look.

Then we look back and see His back.

He is close […] even in the blackest grief…
A gift in the grief… The Glory of God passing by in the dark.

I love you … and so pray.

[…] Love, the star that never falls…

You are not alone

I truly hope that regardless of where you are on your own journey: at the beginning of an exciting adventure, in the middle of the most difficult time in your life, or nearing the end of a dark season and seeing light and hope, that you will remember this simple fact:

You are not alone.

It may feel like it. You may feel thousands of nights pass and never truly feel connection or purpose but I promise, those nights will end. There is hope for all of us. It may be far, far away from you right now. Please take comfort in knowing it is there. And when the time is right and it drowns you in every rich drop, your life will completely change. From someone who has been to the valley of death and has returned with an abundance of undeserved life, there is hope.

Anne Jackson