One Year

With each day that passes, I’m more acutely aware that Scott and I have been actively trying to conceive our child for officially a year now. Perhaps the thought of “a year” makes it seem longer than it has been in reality. Twelve months. One year.

I cannot believe what this year has held. Countless prescription hormones. Oral, injections, patches, suppositories. The myriad of side effects: hot flashes, insomnia, migraines, dehydration, bloating, chills, pain, mood swings, crying spells, bruises, nightmares, 30 pounds of weight gain, and probably more that I’ve forgotten with time. Literally dozens of early morning drives to our Beachwood clinic and a couple even further out to Avon to make sure my specific doctor was the one doing any needed tests. Labs and more labs, scar tissue building under each antecubital vein. Oh and transvaginal ultrasounds – literally dozens. They used to make me feel violated but now knowing that every tech in the office has seen my female anatomy, external and internal? It just makes me feel even more numb.

The Beachwood office is grey and drab but the secretaries and nurses add bits of color. This place is where I watched all of my follicles grow, it’s where my embryos rest, frozen in time, and it’s where I was promised hope. It’s where both of my intrauterine inseminations were cancelled, where we found out I wouldn’t be having a 5-day transfer, where over a dozen follicles were extracted from my ovaries while propofol kept me sleeping and as the nurse anesthetist put it, fentanyl kept me from writhing in pain. It’s where my husband’s sperm was injected into my eggs and the cells in our embryos later multiplied into blastocysts. It’s where I woke up after IVF, tears streaming from the months of pain before combined with the screaming, acute pain of the needles that had just pierced my vagina and ovaries fifteen times. I prayed to God that morning and silently hoped that all of this was worth it, that every tear, every procedure, every hope and disappointment, every check written would soon be worth it.

A year probably seems so insurmountable because of the questions that never leave my mind. Was a year a fair deadline, or was it merely a super-imposed notion? If we are not pregnant at a year, would that mean our chances were higher or lower that we would soon – or ever – meet our child? What does “a year” really mean; what does it really define?

I hope to find out soon, but for now I know that my husband and I are the 1 in 8. We have infertility, and I think we have it bad. We have given our hearts, souls, and finances in hopes of bringing a child into this world. Our families and communities have rooted for us, supported us, and prayed for us on this journey. (Thank you.) But what is a journey anyways? Does it always end at a destination? Maybe not always the one that hopes and dreams and aching hearts are made of. And that is a fear too big for me to say out loud.

I once had a dream (while on ovarian stimulating shots, where the dreams are extra vibrant, cruel, and detailed) where I had finally given birth to the perfect child, a sweet and beautiful daughter. It horrifies me that my mind remembers the graphic details during which a man with no face stormed into our peaceful hospital room past my husband and I and grabbed the swaddled bundle of joy right from my arms. The man was screaming that it had been a mistake, aggressively shouting that I did not have a baby after all. I sat there with my mouth wide open, traumatized to a point of no return. Each time I hit that point in recalling that story, my mind fades to black.

So, one year. It’s been a cruel one punctuated with hope. Yet I plead with you, Time, “Please don’t let there be a second year of this.” I’m not sure my heart could bear it. So for now, let each new day on this journey only hasten the arrival of the hope of our promise. May this territory never become our familiar.

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?”

2 months

It’s been two months since my liver transplant, and I can’t believe where I’ve been during these past 8 weeks.  I can’t believe what I’ve been through, the support I’ve been shown, and how wonderful God is to stand by His children.  I can’t believe I made it through what I have, and when I think of what I still have to endure to get through this, I’m comforted knowing the worst part just has to be over by now.

Rewind… August 31st, 2010, the middle of the night.

What a difference a phone call can make.

Or what a difference eight hours can make… when you’re in a deep sedation, lying on a cold, metal table with your abdomen sliced open in three directions, doctors working all around you to remove a diseased, dying liver and its hardened vessels to replace it with a healthy donor’s organ and properly functioning vessels.  You know it’s probably not the same kind of eight hours for your family and friends waiting nearby, and you feel guilty for making them go through that kind of waiting, you know, the kind where you don’t know if your loved one is going to wake up or not, wondering what condition she’ll be in if she does wake up, wondering what the road ahead will truly be like…

What an amazingly short, yet life-changing journey it is to be living one evening, at a fun birthday party, in fact, not even dreaming you’d be awakened by a phone call in a few hours… fast forward to the very next time you are awakened… this time, with a new organ inside your body, a list of strong, foreign medications now running through your system, 50 staples going in every direction across your abdomen, a breathing tube frustrating you, and a thousand lines, tubes, and drains running into and out of you in every direction.

You wonder how it’s possible to gain 20 pounds of fluid when you were, well, 20 pounds lighter the last time you remember existing.  It’s everywhere, and it seems the center of gravity is in your middle, which is so swollen that it appears to be anything below your neck and above your legs, also perceived as tree trunks.  That’s what a difference a few hours can make.

Slowly… the pain pump is taken away.  The meds are weaned to normal levels.  Labs, vitals, and blood sugars are measured around the clock.  Certain systems don’t work.  Certain systems are affected negatively by the new medications.  Sleep is a gift, and getting in and out of bed is the most painful realization.  Getting comfortable in bed is a rare treat, and even at that, the nurse brings you pain medications.  Breathing is a chore, and walking is a feat.  You can’t shower or brush your hair, and you can’t bend, twist, or reach.  Your arms are the only strength you have, and without them you wouldn’t be able to get out of bed on your own or adjust your body on your mound of pillows.   You deem it nearly impossible it is to exist without any structured abdominal muscles, and you wish you were past this part already.

You soon wonder why you packed 4 or 5 bags about a month ago.  Did you seriously think this would be easy, and the week-long hospital stay would be long, boring, and almost unnecessary?  One bag for all the time (even ICU!), another for when you get to a real floor, one for when you’re bored and want things to do, and one for your clothes.  Because you hope to be wearing real clothes after a few days.  Right.  You will later laugh because you were very content to be in a hospital gown – not even your designer gowns but the hospital’s gowns(!) because your incision was so messy and the clothes didn’t fit your new swollen body anyways.  Then, towards the end of the week, you remember the cute bathrobes you packed and wear them instead of double-gowning, and that works for the rest of the time.  But really…. 5 books to read and cards to play and your MacBook Pro?!  You barely even used your iPad!  Coloring books and the huge box of crayons for boredom? Sleep won that choice.

Anyways, each day, you lose a little more fluid, while at the same time, each day, you’re surprised to find a new area that’s swollen to unbelievable levels.  You feel like a stranger to your body.  You refer to yourself as a whale, and you quite honestly are.  But one day, you step on the big hospital scale and realize you’ve lost 10 pounds!   The next, another 10!  The doctors say to be patient because, while you’re starting to have more defined body segments than just “a middle,” it will take a couple of months to lose all of your abdominal swelling.  And it does.

Every morning at 4am, they come in for labs.  Your nurse gets them from your central line, and once your central line comes out, the phlebotomist comes in, pokes your arm, and draws vials of blood to be tested for everything from electrolytes to liver panels and metabolic panels to simple, yet all-telling, complete blood counts.  When you leave the hospital, you will go to the out-patient lab twice a week for labs because of how important a few numbers are to rejecting or not rejecting your organ, and it won’t be until 1.5 months that you start going weekly.

When you finally get to go home from the hospital, you’ll be surprised how uncomfortable the ride is.  You’ll be afraid of bumps, turns, sudden stops, and seatbelts, and you’ll be surprised that bumps aren’t nearly as bad as turns.  When you get to your house, you’ll be surprised that yes, you can climb steps, and also at how much your dogs missed you. 

You’ll also be surprised to see you can’t get into bed, and you will go into a panic.  The day and the drive have exhausted you, and you need a bed!  When your dad removes your foam mattress topper (6” extra height) and you slowly log roll yourself onto your mattress, you will have no where to lay since your incision runs so deep into your right side.  You order special pillows and still sleep so uncomfortably.  After a few nights, you give up and sleep on the couch or in a big comfy chair.  You quickly find sleeping propped up on something is the only way you can actually get some sleep.  And naps are a necessity to a healing body … same thing goes.  Couch or chair.  You think this will never end, but after a month you get to sleep in your own bed again, and it feels so good to be “home.”

You visit the transplant clinic every week, then after maybe 1.5 months, every 2 weeks.  By week 6, the doctors let you come back in a month.  How exciting!

You’ll make two unfortunate trips to the emergency room before those first tough months are over – one for a leaking drain site, another for an infected and split-open incision.  They will both be difficult visits, one because of the discomfort and mess, another for the pain it entailed.  You hope that’s the last time you have to go to the ER for a very long time.  Being a transplant patient is even more complicated than being a liver patient.  ER doctors are even more scared of your history than before!

With the open incision, you decide it’s time to lay on the protein.  You have your mom pick up protein powder, and you make milk shakes (milk + protein in a shaker bottle!) that you reluctantly down at least once a day. You are determined your incision will heal.  Plus, you’re hoping the protein will be good for your body – Due to the new meds and your body’s adjusting, you don’t have much of an appetite and have been losing weight constantly since you came home from the hospital.  Now, at 2 months, you’ve lost a total of the high end of 20-some pounds since before the surgery took place.  Nothing fits, and you have every size Gap jean imaginable, not to mention at the present time, you’re ready to go buy a size 0.  Any smaller, then what happens?  You don’t want to even think about it.

You get a home nurse for about 3 weeks to measure the open incision and make sure it’s healing well.  You hope it closes by your 2nd month anniversary because it’s just a nuisance.  Wet to dry dressings, twice a day.  A routine you could live without.  And sure enough, the day before your 2nd month anniversary (yesterday), you wake up to find it completely intact.  You thank God even though you know your abdominal skin will now bear a huge scar, and you won’t have the feeling and sensation you once had.  Your scar and the surrounding area is numb to the touch, yet it somehow still throbs in a couple of places.  But at least it’s finally closed!

You enjoy the first 5-6 weeks laying low at home and enjoying visitors, and when you regain your driving privileges at 6 or 6.5 weeks, you’ll make lunch dates to catch up with your friends.  You quickly learn where your limits lie and remember you’re still not fully healed.  You sleep 10-12 hours a night, and anything less makes for a difficult day.  You call your nurse coordinator daily for a few weeks and then are amazed you can go a whole week without a new question or concern.  She’s happy for you and probably relieved you’re not as needy anymore!

You’re keenly aware of where you’ve been and are scared you’ll ever have to go back there again. You’re grateful for your faith, family, and friends, and know they’re a large reason you got through this.  The other reason is, you’re a fighter; you always have been and probably always will be.  And you know it.  And you know strength doesn’t come without a price.

While you’re not where you were on August 31st, you’re far from where you were September 1st, and that’s in itself a miracle and a blessing and everything good and wonderful.

So here’s to another 2 months of life, another 2 months of healing, and hoping these first several months will go by fast so you can feel better than ever.  Here’s to hoping you will have a profound story to write on that note you plan to send your donor’s family, a story of a life drastically changed by a selfless gift, a story of an existence improved beyond measure with the gift of one organ, an amazing transplant team at an record-breaking, award-winning hospital, and the patience of a few months’ time.

Thank you to everyone who’s been anywhere on this journey with me for the past 2 months.  Whether by a phone call, a blog comment, a visit, a card, a gift, a text message or a prayer… I will never forget the role you played in my life, how you helped me get through each day of a very hard time. 

I’m so grateful for these past 8 weeks and everything that’s led me to this place.  I can’t wait to see what’s next.  I’m full of gratitude, hope, and excitement.  I’m eager to see past recovery and discover the better version of everything with this brand new life I’ve been given.  I’ll keep you posted – I have a feeling good things are ahead

So much love,
Amanda