5 Years.

5 years seems so short sometimes.  Tiny babies grow to age 5 right before your eyes.  My dog is 11, and that happened out of no where! Has it really been 2 years since I’ve been out of the country?  My parent’s house is 19 years old? I can’t even believe Scott and I have been married for almost 6 months (what?!) Everything feels like it just happened.

But this week, time has stood still; it has felt like something so long, something so very substantial.

Monday was my 5 year anniversary of receiving my new liver.  I think back to what the past five years have held, and they have been full of so much.  I recently heard from someone that their mother had the disease I had (PSC) and it turned into cancer, which eventually took her life.  That’s the road I was on.  I was so close, and I barely even knew it.  I will be thankful for my donor every single moment of every single day because he quite literally saved my life.  I don’t know him, or really anything much about him, but I feel for his family who lost a son.  Perhaps a brother, a grandson, and a nephew. A friend, a classmate.  It is hard to celebrate knowing you’re doing it while another family is still grieving, and will grieve beyond the length of time.

5th transplantversary

But we do celebrate, even though sometimes bittersweet, we were able to celebrate on Monday night.  My husband surprised me with a big cookie cake that said “Happy Transplant-versary” on it, and we enjoyed dinner together and celebrated the life of a guy who was just turning a few years old the night I got “the call” for my transplant.  We were out for a birthday dinner to celebrate his sweet life, and I had no idea that it would be the last place I’d go, the last thing I’d do, until my phone would wake me up just past midnight on August 31 with the message that my organ was en route to the Cleveland Clinic and to get there as soon as possible.  I jumped into the shower, found some comfy clothes, and loaded last minute-items into my bag, knowing I’d be in the hospital for awhile.  Confident, but unsure of exactly what to expect, my parents drove me to waiting gifted surgeons, doctors, and nurses.

In a matter of hours, I went through something that changed my life completely.  A liver was a good thing, yes, but we would have a waiting period to see how well my body adjusted to it.  There was also the recovery period that the nurses told me would take about a year.  (I never did believe them until 5 months later when I tried to resume my bachelors degree in nursing.  I quickly believed them and put my life back on hold.)  My immune system would be affected forever.  I would start a new medication for life.  I would have lots of return appointments, CT scans, and lab work.  I don’t know if I’d be up for recovery again, and it did add a good amount of wear to my body, but as crazy as it sounds, it’s been worth it.

The hardest time in my life was worth seeing my sister graduate with her MBA.  It was worth being by my dad’s side after a bad accident landed him in the ICU.  It was worth me meeting Scott, my now-husband. It was worth going to Ireland with my college’s nursing school, and it was worth going to Switzerland and revisiting France with my college’s public health program.  It was worth all of the new people I’ve met.  It was worth being with Haylie as she’s grown.  It was worth being immunocompromised and getting sick more often than usual.  It was worth getting to plan my wedding with my super gifted mom.  It was worth it to be welcomed into Scott’s wonderful family.  It was worth it to get to live in my own house.  And it was worth finally being able to complete my baccalaureate degree after 9 years of fighting against my body.

Each day, I’m cautious about not catching any illnesses, and I need to get my sleep quota, and I still have psoriatic arthritis and get allergy shots and go to several doctors…  That’s fine though.  It may sound like a lot to you, but I’m used to it.  This has been my life for 23 years as I was diagnosed as a small girl. But I’m thankful that the Lord has allowed me to accept this as my life and that I’ve been able to make the best of it.  None of these days were guaranteed to me, so I can only see each new day as a gift.  Because if it wasn’t for my new liver, my days would have been limited.  They still are to an extent – I won’t live to be 1000.  But I went from a hopeless diagnosis to a lifetime of love and memories and gratitude.  That’s more than all right with me.

I like to think of my donor looking down on me and being proud of the experiences I’ve had.  He knows how thankful I am. I also like to think of my liver-sibling who received 1/3 of my liver as a tiny infant, and I hope and pray the child is a happy, healthy 5 year old today.  Our transplant was really so miraculous.  It’s a heavy gift that weighs on your soul yet lifts you up, somehow, at the same time.  Worth it.

And here’s to many more 5 years!!

This journey…

As some of you know, I (finally) graduated in August after 9 years in college.  And as some of you also know, for all of those years, I fought and fought to get ahead despite my many health challenges.  I had to take a year off after a car accident, another year off after my liver transplant, and semesters off for my subsequent abdominal surgeries.

I began college in 2005 pursuing my nursing degree at Kent State.  I excelled and felt like I had found my calling.  I can’t even describe how I felt when caring for my patients.  It gratified my soul so deeply knowing I was able to give back to people in need, encourage them, or help them through a hard time.  I earned high grades in a rough, competitive program and made friends with my instructors.  It sounds like the perfect story, right?

Well, I was still battling a life-threatening liver disease.  I could barely make it through an 8 hour clinical shift without feeling like my body was going to fall apart.  The work was very physical, and it set off my fibromyalgia and arthritis pain in the worst way imaginable.  The stress of a, well, high-stress program wore me thin.  24-7, I was either sleeping, studying, or in class/clinical, even in the summer.  My body suffered so much during these years, and I believe it sustained permanent damage from me not listening to it, but I was doing so well at my school work, thriving as I was being continuously challenged, and enjoying the patients so much.

Then came the tumor that randomly appeared on my liver. At the end of a very normal semester in nursing school, a routine CT scan showed it clearly.  The tumor was inoperable and in a location that made it untestable.  We were to proceed, assuming the worst: cancer.

I was quite literally told to put my entire life on hold and then fight for it.

I wasn’t ready for any of that or anything else that came that summer.  Who is?  No one is ever truly ready when these things happen.

God gave me so much peace during that summer – so dramatically noticeable that I will never be able to deny it.  However, all of the tests, the chemo… there was so much physical pain.

Then came the pinnacle of physical pain and the resumption of emotional and mental pain.  More like anguish.  The surgery caused the absolute worst pain – pain, after 18 years of liver disease, that I never even knew was possible.  I had to learn to eat again, walk again, go up stairs again.  Every muscle in my abdomen had been cut through, and I became quite skilled at protecting my excruciating abdomen where 50 staples once lived.   I had to learn to live with an even more fragile immune system than I had before.  The first 6 months, for these reasons and more, were torture.  If it weren’t for the outpouring of love and support from so many people and the knowledge that a young man died so I could live, I don’t know if I could have gotten through it.

After living like that for awhile, you are pretty much begging for life to go back to normal.  My doctors advised me to take one year off of school to completely recover, but I, Ms. Type A, was determined I was going to return to school for spring semester, 2011, barely 4.5 months after my surgery.

As I was told, I crashed and burned.  So that semester never really amounted to anything even though I tried.

Around that time, I saw my infectious disease doctor.  These doctors specialize in keeping transplant patients (who are immunocompromised) safe from any type of communicable (contagious/transmittable) illness and are highly trained in what they do.  My doctor told me, in no uncertain terms, that nursing school was not an option with my new immune system.  I began taking anti-rejection medications to prevent my body from rejecting my new organ, and as a result, the medications suppressed my immune system.  She told me I would catch anything my patients had and even basic illnesses could turn into “worst case scenarios” with my immune system.  (Which last month, we found to be true – blog post coming up soon.)  I had some acceptance issues so for the time being, she wrote a letter for me to be excused from seeing any patients with communicable illnesses.  Even without contagious patients, being in a hospital a couple days a week, I knew I was walking on thin ice.  Germs are everywhere in hospitals, and anyone working in one leaves covered in a multitude of bacteria.

I proceeded like this for awhile until I eventually was able to get to a point of acceptance and heed my doctor’s advice. It was a long, emotionally difficult process for me.

The end of my nursing career was more of a move out of desperation and the realization that I had ZERO options left.  I could not even begin to tell you the options I tried – I was like a crazy person looking into everything and consulting everyone I could trying to fit a square peg in a round hole.

Even if I could get through school, any job I took would require me being with sick patients.  If I wanted a job on a “not sick” unit such as case management, I would need 2 years of experience on a typical unit with sick patients.  I had literally exhausted all options when I, myself exhausted, heard about a newer college at Kent State – the College of Public Health.  The rest is history.

In an effort to publicize their growing online options, Kent State has been interviewing students with unique experiences who ended up being successful with online-only baccalaureate programs.  An employee interviewed me and wrote up an article, and it hit a major Cleveland news station today.  Go ahead and check it out to see how the story ended, or rather, continued.

I hope that my story first of all, provides someone with hope, that they, too, can overcome any struggle and end up successful and happy.  I don’t believe the “you can accomplish everything you put your mind to” myth.  What’s best for you is all that will work out. Each of us is incapable of doing certain things well, and perhaps this is God’s way of letting us find our true calling using our individual genuine gifts.  I believe we need to try our hardest and fight for what we want to achieve, but when that’s not possible and we have truly exhausted all options, we need to know when to stop and fight for a new dream, always believing a Higher Power is orchestrating something greater than we could ever know.

Secondly, I hope that this story honors my donor.   Someone lost their teenage son, and solely because of that tragedy, I’m alive to tell my story, his story.  It’s my highest honor.

None of this is without extreme gratitude and humility.  I have done none of this on my own but faced each day at a time and fought for my life, both literally and figuratively.  I owe every bit of this to God, my donor, my super supportive friends and family, my amazing transplant surgeon, Dr. Eghtesad, and world-class team of doctors at the Cleveland Clinic, the deans and instructors at the KSU College of Public Health, and the enormous support of the Student Accessibility Services on campus.

As seen on WKYC:

Amanda

Liver transplant patient completes Kent State degree

She completed almost three years of nursing school when doctors said it was time for a liver transplant.

AKRON, Ohio — Amanda Goodwin of Akron, Ohio, is no stranger to adversity. When she was 5 years old, she was diagnosed with a progressive liver disease that would eventually require a liver transplant.

In May 2010, she had completed almost three years of nursing school and was doing really well when doctors discovered a tumor and said it was time for a transplant.

“My doctors advised me to not move forward in nursing because I was so susceptible to possible infections due to an immunosuppressant drug I had to begin taking,” Goodwin explained. “That wasn’t easy to hear.”

Despite having to take nearly a year off to recuperate, Goodwin still wanted to finish a degree from Kent State University.

“So I was looking at my options, and I heard that Kent State’s College of Public Health offered a number of online options,” Goodwin said. “I thought that would be perfect for me because I was recovering and actually required two more abdominal surgeries. I couldn’t attend classes regularly, but I was still interested in pursuing a degree in healthcare. So I decided to transfer to a public health program at Kent State because it’s all online and if I needed help, campus was only 15 minutes away.”

Despite her health issues, Goodwin participated in a two-week intensive course in Geneva, Switzerland, in May 2013. Ken Slenkovich, assistant dean of Kent State’s College of Public Health, led the trip.

“During the trip to Geneva, I got to know Assistant Dean Slenkovich, and he was nothing but supportive though everything,” Goodwin said. “Throughout my time in the College of Public Health, everyone on his staff worked closely with me, even when I had health setbacks.”

Slenkovich was immediately impressed with Goodwin.

“The trip afforded me the time to spend with her, and I found her to be a delightful and bright young lady,” Slenkovich said. “She’s very passionate about public health and wants to apply her knowledge to help people.”

“I’m healthier now,” Goodwin said with a laugh. “And I’m happy to say I graduated last August.”

Goodwin, who graduated with a Bachelor of Science in Public Health with a concentration in health promotion and education, is enthusiastic when talking about taking classes online.

“I loved the public health online program,” Goodwin said. “I loved every class I took. I focused my studies on health education and promotion, and I really thrived. Everything was so organized. The notes were there, the videos were there, the links – everything.”

Given her occasionally uneven stamina during her recovery, Goodwin loved the ability to work on her classes on her own schedule.

“I was able to maintain my grades and do it on my time,” she said “I’m so glad I found that program because otherwise I don’t know what I would be doing right now.”

She also enjoyed getting to know other students in the online program.

“I interacted with lots of other online students,” Goodwin said. “It’s funny because I didn’t meet them in person until graduation.”

Goodwin is especially pleased that she can still work in the healthcare field.

“With my degree, I feel like I can help just as many people, if not more, than I would with a nursing degree,” Goodwin said. “It’s just that it would be in a different form. I can still help people.”

As for the future, Goodwin is busy planning her wedding this spring, and she’s optimistic about the future.

“I would love to work at Lifebanc, which is Northeast Ohio’s organ donation and procurement agency,” Goodwin said. “That would be my dream job. I may have an opportunity to complete a master’s degree, so that might be in my future.”

Kent State is a leader in the state and the nation in offering online courses and degrees. Since 2009, online enrollment at Kent State has grown 900 percent, and the number of online instructors at Kent State has grown from 86 to more than 600.

Kent State’s College of Public Health was established in 2009 to educate and train students to meet the current and projected shortage of public health professionals in Ohio and the nation. It is one of only two colleges of public health in Ohio and the first to offer a Bachelor of Science in Public Health. Its academic programs integrate theory and practice to equip graduates with the knowledge and skills to address the health challenges of the 21st century.

Photo credit: Stephanie Doyle

Wait.

Before I leave for Europe, I want to to leave you with this. I found this today, and apparently I posted it somewhere else – just months before I found out I needed a liver transplant.  Today, these words ring so much truer today than when I posted them before.  This is for me and you, everyone out there who is tired of waiting, feels it will never end, and is frustrated trying to see the purpose.

Oh what I have learned in the waiting…

Desperately, helplessly, longingly, I cried;
Quietly, patiently, lovingly, God replied.
I pled and I wept for a clue to my fate . . .
And the Master so gently said, “Wait.” 

Wait? you say wait? my indignant reply.
Lord, I need answers, I need to know why!
Is your hand shortened? Or have you not heard?
By faith I have asked, and I’m claiming your Word. 

My future and all to which I relate
Hangs in the balance, and you tell me to wait?
I’m needing a ‘yes’, a go-ahead sign,
Or even a ‘no’ to which I can resign.

You promised, dear Lord, that if we believe,
We need but to ask, and we shall receive.
And Lord I’ve been asking, and this is my cry:
I’m weary of asking! I need a reply.” 

Then quietly, softly, I learned of my fate,
As my Master replied again, “Wait.”
So I slumped in my chair, defeated and taut,
And grumbled to God, “So, I’m waiting for what?” 

He seemed then to kneel, and His eyes met with mine . . .
and He tenderly said, “I could give you a sign.
I could shake the heavens and darken the sun.
I could raise the dead and cause mountains to run.

I could give all you seek and pleased you would be.
You’d have what you want, but you wouldn’t know Me. 
You’d not know the depth of my love for each saint.
You’d not know the power that I give to the faint.

You’d not learn to see through clouds of despair;
You’d not learn to trust just by knowing I’m there.
You’d not know the joy of resting in Me
When darkness and silence are all you can see.

You’d never experience the fullness of love
When the peace of My spirit descends like a dove.
You would know that I give, and I save, for a start,
But you’d not know the depth of the beat of My heart.

The glow of my comfort late into the night,
The faith that I give when you walk without sight.
The depth that’s beyond getting just what you ask
From an infinite God who makes what you have last.

You’d never know, should your pain quickly flee,
What it means that My grace is sufficient for thee.

Yes, your dearest dreams overnight would come true,
But, oh, the loss, if you missed what I’m doing in you.

So, be silent, my child, and in time you will see
That the greatest of gifts is to truly know me.
And though oft My answers seem terribly late,
My most precious answer of all is still . . . Wait.

Russell Kelfer, 1980

Thank you to my precious donor family, whoever and wherever you are, for choosing to give the gift of life.  Because of you and your sweet son, I am fulfilling my dreams all around the world.  My heart is swollen with gratitude; I could never find the words to express it.

Leaving a legacy

This week, my uncle went home to be with Jesus.  I want to tell you a little about him and how he played a part in my story, and now in the story of so many others.

God must have needed a very loving angel when he called my uncle home. We may say his life was too short or we want to keep him here to love or to do more good, but God’s ways are higher than ours. Uncle Kirk is going to touch more lives for our Lord through his death as complete strangers learn about his legacy and the life he lived.

I was his second niece and flower girl, the little girl who would come over and entertain his girls and play with his dogs.  I will always remember his hugs and devotion to his family. He loved so many people and so many things. He brought our family a lot of joy.

In remembrance of my uncle’s love and humility, I want to write about something that is special to both of us. Uncle Kirk and I are the only people in our family who now truly, personally understand the gift of organ donation through being a recipients or donor.

During the summer of 2010 while I was waiting for a life-saving liver transplant, I rallied to raise money for a fundraiser for Lifebanc, our area’s organ donation and procurement agency. Without any asking, Uncle Kirk took it upon himself to personally raise hundreds and hundreds of dollars for my team. At the day of the fundraiser, Uncle Kirk wanted to sign up to be an organ donor. I had no idea at the time.

At the hospital this week, shocked at the sudden state of my uncle, I found out about his decision, and I was moved.

How like my Uncle Kirk was it to want to be an organ donor? To want to use his healthy body to someday save and change the lives of dozens of strangers? Kind of predictable in hindsight.

He got his wish, and I’m in humble awe of how my story helped move him to that decision. Today, so many people are beginning their new lives all because of my uncle and his giving heart.

As a 2-year liver recipient, I cannot even express what a gift Uncle Kirk has given to not just one person, but so many. A dad could have sight today or a young boy have a new, beating heart. Maybe like my story, a college student and an infant are sharing a strong, healthy liver. Perhaps a burned, injured soldier has a chance to look normal again, and a woman on the verge of death is breathing through pure, healthy lungs.

My uncle made a difference every single day, but I want everyone reading these words to know that he will continue to make a difference every single day…. Literally.

He will live on and make a difference through his legacy, without a doubt, but you all know that. I want you to know and forever remember that he gifted his body to dozens of people and his love is literally living on all over the nation. And it will continue to, just like the memories in our hearts.

Thank you for loving my uncle and my family, and thank you, Uncle Kirk, for leaving a beautiful legacy of love.  You will never be forgotten, and you are living on through your death.  In heaven and on this earth.

Baby

I work with children on a daily basis. Little children – babies, toddlers, a few preschoolers. And they’re my world. If you know me at all, you probably know that.
And soon, I want to specialize in pediatric nursing not only because I love kids but because I was once a “sick kid” and know what that’s like all too well. I know what I went through, and I know what my parents went through with me.
Another family walked in our shoes not too long ago…
Some of you may remember that part of my liver went to a 3 month old baby. Livers regenerate, so sometimes they can save two lives with one liver
But that’s just the thing.
My life was saved, but was the baby’s?
I will never know, and that’s hard.
I contacted Lifebanc’s bereavement department and was surprised to find out a “yes” or “no” is considered confidential information, even if I have no idea who this child is, where he or she is from, or even her gender.
I will never know if the tiny person sharing my blood, his [my donor’s] blood, is even alive. I will never meet my little transplant brother or sister. I wouldn’t even know if he or she was sitting beside us in story time or in the stroller next to us at the zoo. He would be turning 2 right about now, and I hope and pray to God that his tiny body was able to fight through the surgery and recovery to make it this far.
If not, my heart is shattered for his parents, for her family.
But I like to think she is toddling around somewhere dragging a doll beside her or just getting up from her afternoon nap with sleepy eyes and messy hair. Sometimes it’s the littlest fighters who come out the strongest.
I hope she is able to wear a sparkly birthday hat and eat a big cupcake while her parents smile and thank God for the same teenage boy who gave me his liver, too.
What a gift.

Promoting Life

LifeBanc Cleveland Home & Garden Show

Remember Lifebanc?  It’s our local organ donation/procurement agency.  Each state, or many areas of larger states, has an organ donation and procurement agency which promotes organ donation awareness, assists UNOS in organ procurement, and is an asset to both donor families and recipients.  I became involved with them last year before I even knew my surgery was imminent.  I became trained as an Ambassador but was never healthy enough to help with any events.  I promised them after my transplant, I’d get going in health fairs, school classes, whatever – helping any way I could.  The organization is a huge reason getting a liver was possible for me, and I could never give back enough.  So, my heart was overjoyed when I started volunteering this month.

First we went to the annual Cleveland Home & Garden Show and I stood at a table and recruited donors and encouraged existing donors.  I am so excited that in my few hours there, I encouraged four people to sign up to be organ and tissue donors.  I shared my story, our stories, and answered their questions.  Four people filled out the forms and signed their names, and up to 32 organs can now be transplanted, up to 200 lives changed.  What a gift they’re giving.

Next, I went to a Jewish confirmation class with a few students and their parents.  It was Organ Donation night in the “death” portion of their curriculum, and the education coordinator at Lifebanc brought me along to share my story. It was my first speaking event, and I was so nervous, but the group started asking so many questions before I got too far down my notes.  We had a really great discussion, and their questions were so thoughtful and detailed.  I hope I was able to share what a difference a donor made for my life, and how important organ donation is.  They’ll all be getting their drivers’ licenses soon and have parents who were genuinely interested, so we left the event very hopeful.

My third event this month was attending a high school basketball game.  It was a big event – rival teams – and they were honoring a student who received a liver transplant in November.  I dragged one of my best friends along, and we tried to recruit donors and thank existing donors for their choice.  It wasn’t the most successful night, but that doesn’t matter.  I’m learning it’s important to get our cause out there, whether people sign up, refuse, or go home to think about it.

My schedule lately has been busier than ever, and I’m doing more than I ever have in my life, and somehow fitting this in as well.  It’s amazing to me.  A year ago, I would have never been able to keep up this pace, live this loud, love this hard, work this long, and give this much.

Each day I check my mailbox in hopes of a response from my donor family.  I know it may not ever come, and I’m okay with that, but it would really touch me to hear more about the boy whose death enabled my life.  I want to know more about him, his life, his hopes and dreams.  I want his family to know I am living my life in honor of him and hope to live all the things he never got a chance to.

Spring is here in Ohio today.  It’s not here for long, but we’re still enjoying it anyways. Although capri leggings and wedge sandals have me pretty hyped up, I’m also feeling so blessed to serve the God of new beginnings, the One who sends sunshine after dark nights.  🙂

Amanda

Liver Transplant Update 2

Looks like nothing’s happening until 4 or 5pm. The transplant team flew to the Cincinnati area to procure my liver. The donor, a teenage male, was in an “unspecified accident” and passed away. Apparently, his organs are going all over the country, and his liver is coming here to CCF to me and an infant. The infant will get 1/4-1/3 of the liver, and the rest should be a perfect size for me! (Livers can regenerate themselves.) They’re 95% sure it will be a great match, so we’re praying it really is the liver I’m meant to have!

I have so much peace that I’m actually surprised. I’m tired from the 1.30a phone call and run to the Clinic, and I’m anxious to get this over with, but I am so close to a new life… Being healthy is on the horizon! The staff here is great, and the surgeons are world-renowned. God himself holds my life in his hands. I have a huge support system and a whole future full of possibilities! We are blessed.

As I said, it’s a good day.

Until 4/5ish…

Amanda