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 its 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 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 it 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 hospital. 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 babysitter, 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 professors 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 with her gastroenterologist, Dr. Vera Hupertz — a close family friend by then — complete with a run-of-the-mill CT scan of her abdomen. These were typical procedures ever since she was five: nothing imminent was expected.
The next day, she went into Hupertz's office. Her 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 feelings of joy and relief. A new liver would revitalize her body’s pulmonary system, effectively removing the chronic effects of cirrhosis her “malfunctioning” organ claimed. She was ready — more than ready.
“Still, we were honestly shocked because it was the last thing on our minds," Amanda said. "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, her Bible for solace against pain. She started journaling, even turning her past into a purple-and-green scrapbook — some of which she’s published. What paired with the laundry list of CT scans, chemotherapy and endoscopies was a deep plunge into the world of transplant survivors. After walking with LifeBanc for a month and joining Donor Now, she soon had others putting on shoes for her. A “Walk for Amanda” was organized in mid-August.
For two 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 one 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. Her father said the family knew well the 80 percent survival rate. They said a prayer and Amanda was admitted to the hospital sometime around 3 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: One-fourth of it was destined for an infant.
The sun shone through the blinds in the windows as Amanda’s nurse wheeled her hospital bed away.
Keith remembers last seeing Amanda — disheveled hair, black-framed glasses — before her bed left the elevator, waving goodbye alongside Pam as she headed to the operating room. It was around 6 p.m. 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 — Morphine, Fentanyl — others feeding a liquid diet. 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 knew 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 swapping, 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 by 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), redressing surgical wounds and intake of more pain medication. Her body, as she knew, would take months to cease the 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 babysitting 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 and professors told her that even if she did make it through nursing school, her suppressed immune system would prevent her from working around ill patients. 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 abdomen reconstruction surgeries, along with a splenectomy, Amanda went through courses in the college like butter, 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 literally be at the end of your rope, you can be where there is 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 ceremony, she says. Roughly two dozen people, no more. It will be Paris-themed — along with the cuisine — and span just about two weeks. The “wedding explosion” in the Goodwin’s basement will disappear come the Saturday of the reception.
“And then afterwards,” Amanda said, “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 said, 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 what makes her story her “gift.”
“I’m just happy to be living life,” she writes in a recent journal entry. “Aren’t you?”
Contact Mark Oprea at firstname.lastname@example.org.