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?”

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In recent news: Liver Preserver Holds Promise for Transplant Patients

Saw this in the Wall Street Journal, Weekend Edition March 16-17, 2013.

Liver Preserver Holds Promise for Transplant Patients

Scientists from Britain’s Oxford University have invented a device that preserves human livers outside the body for up to 24 hours, an advance that could potentially make more of the organs available for transplant at a time when demand is climbing.

This has huge potential.  The future of medicine is so exciting for transplant patients.

Life, Interrupted: Medical Bills, Insurance and Uncertainty

I like to write my own pieces on this site, but sometimes I read things that resonate much too deeply to ignore.  Things that I want to shout from the rooftops and say, This is real life.  This is my life.  Why didn’t I think to write that first?

Suleika Jaouad writes a column for the New York Times called “Life, Interrupted,” about being a young twenty-something with cancer.  Sounds familiar, right?  Her article today struck a chord deep inside.  I hope you’ll read it and understand exactly what my family and I go through playing the patient-vs-insurance game every single day.  I hope you’ll pray for health care reform in this country and that it helps instead of hurts and doesn’t end up leaving we chronic illness patients just more sick and tired.

Here’s our story.

Like a lot of other young people, I never thought about health insurance until I got sick. I was 22, and my adult life was just beginning. But less than a year after walking across the stage at my college graduation, I received an unexpected diagnosis — acute myeloid leukemia — and with it came a flurry of consultations, tests and appointments. From early on, my doctors told me I would need chemotherapy and a bone marrow transplant.

But before the shock of the news could settle in — before I could consider where and how I would be treated — I did what most Americans must do when beset with a medical crisis: I called my insurance provider.

Before I made that first phone call, I confess I didn’t know exactly what the word “premium” meant. And “co-pay” sounded to me like what happens when friends split the bill at dinner. Certainly, the term “lifetime limit” had no meaning to me yet. The last time I could remember getting sick had been a two-day bout of food poisoning during my junior semester abroad in Egypt. Now, I was facing cancer — and I was beginning to get worried about coverage from an insurance plan I knew virtually nothing about.

If you have a chronic illness in America, there’s a good chance you also hold a degree in Health Insurance 101, whether you want to or not. The first thing I learned was how lucky I was to have health insurance at all. (An estimated 49 million Americans, and nearly one-third of Americans 18 to 24 years old, are uninsured.) I was on my parents’ insurance, a plan provided through my father’s employer. It’s a comprehensive plan that will cover me until age 26 — two years from now.

I’ve been fortunate to be treated by excellent doctors at world-class hospitals. In the last year alone, my insurance has covered over a million dollars in medical expenses, including a bone marrow transplant and 10 hospitalizations amounting to a combined five months of inpatient care. It all sounds straightforward when I explain it like that. But even if you have insurance, the cost of health care — in dollars as well as in time and stress — is incredibly high.

As health care was debated around the country leading up to the Supreme Court ruling on the Affordable Care Act in June, my bills kept coming in. Every time I see a doctor, get a CT scan, receive chemotherapy or pick up a prescription, insurance covers only part of the transaction — and there’s always a bill on top of it. For a cancer patient like me who visits the hospital on a weekly basis (and that’s when things are going well), every few days I owe another payment. Keeping track of how much I owe, and for what procedure, and why, can make my head spin. Just learning the ins and outs of my plan’s coverage takes sustained, persistent attention and energy, things that sick people have in short supply.

And no matter how closely I keep track of the bills, there are always surprises and unexpected charges. During a six-week hospitalization for intensive chemotherapy, teams of doctors trickled in and out of my hospital room every few hours: my primary oncologists, the palliative care unit, gastroenterologists, X-ray technicians, infectious disease specialists and on and on. Most of the time I was too tired, too nauseated or too looped on pain medicine to remember who was who or what they were doing in my room. But my insurance company kept track. Even though my hospitalization was covered, many of the doctors who visited me were not part of my health plan, which meant that for every time they set foot in my room I would receive a steep out-of-pocket bill. After all, what was I going to do: tell the doctor prescribing my anti-nausea medication to skip my room because he happened to be out of network?

Another cost of health insurance is time. Time is money, as the saying goes, but when it comes to cancer and health insurance, to save money takes up a whole lot of time. My mother graciously took on the task of disputing claims, keeping track of bills, requesting approval for a procedure or a drug, and spending countless hours on the phone with my provider. While it may be a labor of love for my mother, in practice, working out insurance questions is just a lot of labor. Between the long hours spent taking care of me and dealing with our insurance, my health care became my mother’s full-time job.

So far, the out-of-pocket costs associated with my cancer care — co-payments, out-of-network charges, the costs of moving to a new city for treatment, fertility treatments not covered by insurance — have reached tens of thousands of dollars. The financial burden of cancer has not yet meant that my parents will need to get second jobs, or that we will have to sell our house — though I know of fellow cancer patients with and without insurance who have had to consider such options. But my mother has had to take the last year off work, a financial and professional sacrifice that’s due in part to the time required to manage my health insurance. What do others do who don’t have full-time help from a caregiver? My mother would do anything for me, but I wish she would be able to spend less time with my bills and more time with me.

In two years, I’ll graduate from my parents’ insurance. What will I do about insurance then? Perhaps I’ll gain coverage through an employer — though holding a job seems like a tall task if I’m still in treatment. Isn’t it a contradiction that insurance is often tied to employment, but that the sick people who need it most are the ones who have the hardest time staying employed? If the Affordable Care Act remains in place, at least I won’t be denied coverage because of pre-existing conditions. That’s a huge victory, but what will the cost of that coverage be, and will I be able to afford it?

When I’m lying in bed at night, I often worry about how cancer may affect my future: my career, my relationships, my dreams. Sick people don’t plan on getting sick. We shouldn’t have the added worry that someday insurance coverage may not be there. Or that a medical crisis could become a financial one too.

It’s good to know I’m not the only one.  And special thanks to my parents who take their powers of attorney jobs seriously and know how to argue the sense out of bill collectors and insurance companies. 😉

Stow woman getting her life on track again

When this came in the mailbox on Sunday, April 10,I couldn’t put it down. The photo made me nauseus, but hey, this girl (just like me!) lived!

I don’t know her personally but we’re both fighting through liver diseases (and transplants), trying to go to nursing school.  I know she’ll be great!

Here it is to all of you non-Akron area readers:

Finally and happily, Marie Pasuit has that much-awaited light at the end of her frighteningly long tunnel.

That peace of mind came last fall for the 21-year-old, petite cross-country runner from Stow in the form of a liver transplant. And not a moment too soon. Marie, the oldest child of Mark and Lisa Pasuit, was diagnosed during her junior year at Stow-Munroe Falls High School with end-stage liver disease. I caught up with Marie and her family recently when they contacted me [the author] about donating the vast amount of medical supplies she no longer needs. The game changer for Marie started out rather innocently. ”I started feeling like I had the flu one weekend,” she recalled. Then things got worse, and she regurgitated blood. Her parents whisked her to the ER at Akron Children’s Hospital. ”It was a rough night to say the least,” Lisa said of her daughter’s plunge into this abyss. What came next would be even more mind-boggling. ”An incredible doctor, Dr. [John] Fyda [a pediatric gastroenterologist], after a ton of tests, narrowed it down to a liver disease,” Lisa Pasuit said. ”Then there were more tests and a biopsy.” The diagnosis? Autoimmune hepatitis with macronodular cirrhosis. A second biopsy at Cincinnati Children’s Hospital confirmed the findings. On her 16th birthday Marie was placed on the transplant list. ”This hit us so quickly, we had no time to think, to react,” Lisa Pasuit said. ‘‘I don’t know how we survived. I think the only way we made it through is that after a while, Marie didn’t seem sick.” Incredibly, Marie was still able to participate in cross-country and 800-meter events. ”Running always came easy,” Marie said. The situation remained relatively stable for a couple of years. Then ulcerative colitis an inflammation affecting the large intestine and colon hit during her freshman year of college. ”The colitis was a lot harder than the liver disease,” Marie said. She had to forgo running and even going to classes. In fact, she was in bed most of the time. ”It all went downhill real fast!” Marie recalled. By last summer she was feeling listless and experiencing back problems. But she was determined to support her younger brother Ryan, who was playing in a baseball tournament near Columbus. So she accompanied her parents on the trip. At the hotel, however, her pain got progressively worse. Never one to cry wolf, Marie asked her parents to call an ambulance, which took her to a hospital in Dublin. ”Doctors there thought it was a bowel obstruction and that Marie was just a drama queen,” her mother said. ”It was NOT a good experience.” At the advice of doctors at Cincinnati Children’s Hospital and Dr. Fyda of Akron Children’s, Marie was transported to Cincinnati. ”She was just a mess!” was how Lisa summed up her daughter’s condition. Further complicating the situation was a newly found clotting disorder. But she improved and was able to return home. When her 21st birthday came along, Marie was feeling so miserable that she returned to the ER at Akron Children’s. A short time later she was on a helicopter, bound for Cincinnati Children’s Hospital, where she underwent immediate surgery for a bowel perforation. ”I got an ostomy [a surgical opening for the elimination of body wastes] as my birthday present,” Marie said matter-of-factly. A few steps forward and few steps back was how Lisa described her daughter’s medical journey, adding, ”Slowly she was getting yellow and green.” But ”one thing at a time,” was how Lisa said she and husband navigated the never-ending land mines. Lisa on leave from her job as a gymnastics teacher at Little Leapers in Hudson never left her daughter’s side during the several months she was hospitalized. Mark Pasuit, employed by J.R. Machining in Hudson, was there with his daughter as often as he could be. And ”it was always good when her brother could come down,” Lisa said. Marie was failing fast. Then out of the blue, Lisa recalled, ”I got a call at 6 a.m. on my cell phone… . A liver had been located. All they said was that it was a ‘young, healthy liver.’ That it was an hour flight away and a perfect fit!” Marie’s transplant surgery took place Sept. 23 in Cincinnati, and ran 14 hours. There are so many people to thank in addition to the donor’s family: transplant surgeons Drs. Maria Alonso, Jaimie Nathan and Greg Tiao; gastrointestinal specialist Dr. William Balistreri; and transplant coordinators Becky Rengering and Susan Seyfang. And everyone who continues to support the Pasuits with fundraisers and prayer. ”It was amazing how quick the recovery was from the transplant surgery compared to her other surgeries,” Lisa said. Still, there were complications. ”She had a hematoma between the lining and the new liver,” her mother said. In time that cleared up, too, and Marie was discharged on Oct. 14. She and her mother moved to an apartment not far from the hospital, where they remained until a week before Thanksgiving. It would be three months before those coming in contact with Marie stopped wearing masks. ”Of course, Purell was in abundance,” Lisa said of the cautions implemented in the wake of the H1N1 concern. Marie is not out of the woods yet. But she and her close-knit family are breathing a sigh of relief. ”We’re past the six-month mark when the risk of rejection is not as high,” Lisa said. Marie’s ostomy was reversed in January. The journey back to normalcy continues to be uphill, including Marie relearning to walk. She spent so much time in bed that her leg muscles began to atrophy. Marie still has a passion for running but had to give up her athletic scholarship. Even so, she plans to attend Walsh University in the fall to pursue a degree in nursing. Lisa who is buoyed by the passage of the health-care bill estimates her daughter’s protracted crisis has easily cost $2.5 million in insurance costs The family is fortunate to get the anti-rejection medications her daughter will need the rest of her life at a greatly discounted price. The timing of Marie’s story coincides with April being Organ Donation Awareness month. ‘‘Everyone needs to understand the importance of becoming an organ and tissue donor,” Lisa said. ”It is a lifesaving decision!” The Pasuits take every opportunity they can to underscore its importance. They even named their Weimaraner puppy ”Livvy” to celebrate Marie’s new liver.

This story in the local paper by Jewell Cardwell touched my heart the instant I read it.  It’s still on my desk and reminds me to carry on (2010, April 12). A runner in high school who won a scholarship, Marie is preparing to go back to college, study nursing. The Akron Beacon Journal. pp B1-4.

Marie, if you’re out there, shoot me an email.  I’d love to hear from you!  agoodwin2010 (at) gmail (dot) com  🙂