More story sharing: “A Wounded Healer – Amanda Goodwin”

I was recently interviewed and photographed for my college’s newspaper, the Kent Stater.  I want to thank the writer who was in contact so many times and took the time to  write such a lengthy article.  It was such an honor to publicly share my story, again, and I pray that this new audience has a chance to be inspired by the story God has blessed me with.

Unfortunately, there were several inaccuracies in the story.  I’m not sure if I didn’t describe something well enough to the writer or perhaps he took too much literary freedom, but this is the link to the article, and I will post it below with my corrections in [brackets]. If you’d like to share the article, please share it from this link where everything is 100% accurate.

A Wounded Healer: Amanda Goodwin
by Mark Oprea

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The soon-to-be bride walks around the daylight in her house, cradling her 10-pound white shichon Haylie up against her chest. She smiles with rose-colored lips. Her almond hair curls into her chin. Her dog looks up at her with beady eyes, a pocket-sized pink bow behind [her] ear.

The mother follows her with words about the wedding shower; the father quips relentlessly through his fatherly grin. Bridesmaids begin to show up in a row, letting the unforgiving cold seep in from the driveway. A five-foot-tall Eiffel Tower [set up for the wedding shower] shines with gold in the dining room. There is still a month or two for things to go wrong.

“We’re not ready to have [the wedding] tomorrow,” she said about the ceremony, “if that’s what you’re asking.”

She is happy. She is nervous. Her name is Amanda Goodwin. She is 27, and she will be married this April.

Amanda has achieved several milestones in the past few months, her latest graduating after nearly a decade in college. Last year, her boyfriend Scott proposed to her. She’s been smiling more often, her mother, Pam, said.

Ever since Amanda was 5 years old, she has had chronic liver disease.

After nearly two decades suffering from the effects of primary sclerosing cholangitis (PSC) — a disease that scars bile receptors in the liver, causing an eventual shutdown — Amanda has been through cycles of hope and despair, often buffeted by late-night phone calls from the intensive care unit [I have never in my life called the intensive care unit.  Maybe he meant my transplant team?]. As someone erudite in medicine, Amanda likes to think of herself as a “wounded healer,” someone who’s experienced firsthand what others only study. For her, it’s been an 18-year-long test.

Moving to Munroe Falls at the age of 9, Amanda spent most of her childhood indoors. She was a “book-smart, intellectual type of girl,”said Pam, the opposite of her varsity softball-star sister, Nikki.

At the Cuyahoga Valley Christian Academy (CVCA), she latched onto the interests of a straight-A student, shot for a solid 4.0 GPA and adored the arts. Even at a young age, Amanda was aware of the research behind PSC. She and her family knew very well that a liver transplant was an inevitable episode — still the only cure known for such a disease. Most PSC patients’ livers last, on average, a decade.

“My doctor said it could happen tomorrow, it could happen when you’re 60 years old,” Amanda said. “I thought I would be a grandma and have grandchildren by the time surgery would come around.”

Yet in the unmeasured meantime, Amanda lived a life bound by the limits of PSC. Some nurses who ran across her case often mistook alcoholism as the culprit of her precarious liver. (She doesn’t even drink.) She often needed 10 hours of sleep or more each day due to ongoing fatigue.  Despite that, Amanda graduated high school in 2005 looking forward to attending Kent State. She had control for the time being.

After a brief stint in the College of Business Administration — her father Keith’s go-to suggestion, owning a successful heating and cooling business himself — Amanda turned to the School of Nursing based on a gut feeling.

As a [nanny], one of the only jobs Amanda could work at the time, she admired the notion of caring for people. The remaining nudge came from introspection.

“Because I’ve been sick since I was a kid. I knew all about the health care system, and patients, and what it’s to be on the other side, being a patient,” she said. “And I thought, ‘What better way to use my journey than to help people and be a nurse?’”

So she did.

Over the next five years, Amanda plunged through Kent State’s rigorous pre-nursing program and into nursing school. She took nutrition and studied genetics in-depth (research continues on the potential for a genetic cause of PSC). Yet eight to 12-hour clinicals brought out the worst in Amanda’s fibromyalgia and fatigue, and her [family] noticed. 

But Amanda had her plan — her usual “goal-mindedness.” She knew what her body was and wasn’t capable of. Above all, she had the will. She decided to continue clinicals despite doctors’ warnings. One even told her to drop out of nursing school.

***

It was right after a 2010 family trip to Disney World when Amanda went in for an annual test ordered by her [gastroenterologist], Dr. Vera Hupertz — a family friend by then —  a run-of-the-mill CT scan of her abdomen. [This was a] typical procedures ever since she was five: nothing imminent was expected.

[The next day, Amanda and her mom visited with Dr. Hupertz.] Hupertz’s voice sounded a little off as she spoke.

“I don’t know how to say this,” she said to Amanda. “I feel horrible saying this to you.”

The CT scan, she told her, showed a sizable tumor on Amanda’s liver. A transplant was vital and had to come sooner rather than later. She and her mother let tears flow. For Amanda, behind the wall were [not only feelings of loss and fear, but] feelings of joy and relief. A new liver would revitalize her body, effectively removing the chronic effects of cirrhosis her “malfunctioning” organ claimed.

“Still, we were honestly shocked,” Amanda said, “because it was the last thing on our minds. Also, we had the fear of whether or not I would make it through surgery or not. It was a very sobering time for all of us.”

Thus began the period of waiting on the organ recipient list. She spent days indoors, diverting a wavering mind through Netflix, [crafts, reading, and] her Bible for solace against pain. She started journaling, even turning her [journey] into a purple-and-green scrapbook. What paired with the laundry list of CT scans, chemotherapy and endoscopies was a deep plunge into the world of transplant survivors[, joining support groups, and learning from them. After [becoming a volunteer] with LifeBanc, she soon had others putting on shoes for her. A “Walk for Amanda” [during Lifebanc’s annual Gift of Life Walk and Run] was organized in mid-August.

For [three] months, Amanda’s transplant liver was still somewhere out there, waiting for her. She was at a moral crossroads. For Amanda to live, she had to wait for someone to die.

***

About 1 a.m. on August 31, 2010, the phone rang again and the family crowded around the receiver. It was her coordinator at the [Cleveland Clinic]. She told Amanda resounding news: they found [a liver] her size.

All Amanda knows about her organ donor was that he was a teenage male who passed away in an “unspecified accident,” a boy still without a name.

With more excitement than anxiety, the Goodwin family nearly “flew” to the Cleveland Clinic. They knew well the [85] percent [three-year] survival rate. They said a prayer and Amanda [was admitted into the hospital] sometime around 3:00 a.m. This was it, she thought. This was the goodbye to PSC.

“This should be a perfect match for me,” Amanda wrote in a blog entry right before her surgery. “I am so close to a new life. Being healthy is on the horizon!”

Lying on the hospital bed that morning, Amanda thought about her circumstances. She felt lucky and blessed – and not just for herself. She found out from the procurer that the new liver was not only saving her life: ¼ of it was destined for an infant.

The sun shone through the blinds in the windows as Amanda’s [parents and close friend watched the nurse wheel] her hospital bed away [towards the operating room.]

Keith remembers last seeing Amanda before her bed left the elevator, waving goodbye alongside Pam [and Amanda’s friend Jen] as she headed to the operating room. It was around [6:00] that evening when the team of doctors finally assembled.

“The thing was, we didn’t know if we were going to be seeing her again.” Keith said. “That’s what was on my mind the whole time.”

The surgery lasted eight hours. Her family was present the entire time.

By 1:30 a.m. the next day, Amanda was out of the operating room. Doctors were surprised at how well the operation went.

***

She was a new person. She was strong. She missed her dog most of all.

The pathway to recovery, Amanda knew, would be lined with tubes administering pain medication — [Fentanyl and] Morphine — others feeding a liquid diet [or breathing for her].  She looked down at her abdomen: 50 staples assembled in the shape of a chevron (a Mercedes-Benz logo, as Amanda puts it). The pain was telling and overwhelming. She gained 30 pounds in fluids alone that week.

As soon as she regained consciousness, Amanda’s logic kicked in. Her education was, at the time, lifesaving.

“Especially with my nursing background,” she said, “I knew that if I didn’t get out of bed and move my body somewhat, I wouldn’t be on my way up.”

She started walking slowly up and down the halls of the Cleveland Clinic. It seemed like a race to Amanda — an “Olympic sport” — and she ran as if she had been preparing her whole life. She mastered her medication intake and lost 10 pounds in one day. She knew every doctor and nurse by their first name, as they were like her. She imagined herself in their places.

But being immunosuppressed as a result of organ [transplantation], doctors told Amanda true body regularity would take months, even a year. She walked and walked despite the time ahead of her. She left the Cleveland Clinic on a Saturday morning. Her mother drove her back to Munroe Falls on an afternoon without a cloud in the sky.

At home, Haylie was waiting for her [at the door].

“Seeing her was proof that I was home,” she said.

What was supposed to be a new life for Amanda was merely another side of the same coin. Adjusting to her new liver meant repeated trips back to the “Liver Clinic” for CT scans (to check for any signs of a returned tumor [or issues with blood flow]), redressing surgical wounds and intake of pain [and anti-rejection] medication. Her body, as she knew, would take [some time to get past the time of the highest chance of] organ rejection. Or as Amanda puts it, “my body was attacking itself from the inside.”

Problems became so frequent that Pam learned how to dress and clean Amanda’s “cratering” wound herself — knowing, just like her proto-nurse daughter, how to attend to it tactfully. Her father had to readjust Amanda’s bed so she wouldn’t have to climb up to sleep in it. She would lie awake late at night examining with her fingers the 90 or so swollen bumps on her abdomen. More tears came. This time, those of exasperation.

“The stamina just wasn’t there for her,” Pam said. “After the transplant her immune system was shot, and the medication she was on was just making it worse.”

After a month and a half, the girl with the incision was starting to show healing signs. She was weary from the side effects of immunosuppressant drugs and steroids (she recalls restaurant menus “shaking”) but began to live somewhat of a normal life. She resumed [nannying] and her work with LifeBanc, but most important of all was the plan to return to nursing school the following spring.

The problem was that Amanda, even after transplant surgery, was able to handle clinicals even less than she was pre-operation. Doctors told her that even if she did make it through nursing school, her suppressed immune system would prevent her from working around ill patients. [For example,] caring for a sick 7-year-old with mono, could mean, for Amanda, a month in the hospital. “Fighting tooth and nail” to continue her dream of becoming a nurse wasn’t enough. She had to look elsewhere.

Her answer laid in Kent State’s College of Public Health, where she picked up online classes in the fall of 2011. Through several [additional abdominal] surgeries, [such as] a splenectomy [and reconstructive surgery], Amanda [succeeded] through courses in the college, even traveling to the World Health Conference in Geneva in 2013. She met her soon-to-be fiancé Scott the following July. He asked her out on a coffee date, and Amanda said, “we just sort of fell in love.”

In August 2014, Amanda graduated from Kent State with a focus in Education and Promotion, nearly four years after her transplant surgery. She lists it as one of her most noted accomplishments to this day, one drenched in trials and tribulations.

The “wounded healer” had finally made her mark. The surgeon’s knife had only cut so deep. The lessons of life continue to pour from her endlessly like the love she transfuses to others, her dog Haylie included — and maybe most of all.

“You can be at the end of your rope, you can be where there literally is no hope,” she said, “and you can still be able to pick yourself back up.”

It was in the fall of 2014 when Amanda’s doctor at the Cleveland Clinic sat her down after analysis. Future warnings aside, he smiled with good news.

He told her, “You can go on with life now. You can start to live.”

***

It will be a small wedding, she says. Roughly two dozen people, no more. [A large 300-people will come two weeks later.] The “wedding explosion” in the Goodwins’ basement will disappear come the Saturday of the reception.

“And then afterwards,” Amanda says, “we can all finally rest.”

She cradles and kisses Haylie behind her ear, talking about her and Scott’s house hunt, their plans to settle in the area by the fall. She wants kids. She wants to travel to France again, along with Italy. All this, she says, comes with time.

An end to Amanda’s journey isn’t finalized. She still returns for clinic checkups every so often, and even spent two weeks in the hospital in December after she became ill. (“I’m not bad,” she admits, “just unstable sometimes.”) She continues to volunteer for LifeBanc and hopes to work for them professionally one day. And to forget her donor would be to forget where she’s going and where she’s been. It’s [part of] what makes her story her “gift.”

“I’m just happy to be living life,” she writes in a recent journal entry. “Aren’t you?”

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