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!!

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Announcing…

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(c) Making the Moment Photography, Cleveland, OH

I am excited to announce that Scott and I got married on April 18 in a private ceremony with close family, and we held a large reception on May 5.

Both days were what dreams are made of.

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

Upset and offended transplant recipient

Everywhere you look people are posting and sharing these “eCards” from the snarky SomeeCards website celebrating their ability to drink a lot, so much to the point that maybe their employers or people who respected them are a little put off.  Some of the people posting/sharing these have been a few of my good friends who should know better… they somehow think this is cool.  My family, friends and transplant community have been personally offended at the nerve of some people posting these all over, or to Some eCards for creating them in the first place.

Some people may be ignorant, but people who know me well know – or know any other transplant recipients – what absolute hell the transplant journey is.

Your liver is not a laughing matter – maybe these folks will find that out when, a few decades down the line, all of that drinking will finally destroy a good majority of their liver and they’ll need a transplant.  Transplant or death will be their options, and if they can’t stay sober or won’t vow to never drink again, then they’ll be dead.  I’m sure they’ll all love their livers then.

Come on, use your mind.  I have had liver disease since age 5 – do you really think all the alcohol I drank from ages 0-5 caused it?  [Sarcasm] Do you think any kind of teenage alcohol binging habits caused me to need a transplant? It was actually quite the opposite. I made it to a liver transplant without even tasting alcohol… you never know what will happen to your body, and how many of you may get hepatitis, have a child with biliary atresia, or something else that would necessitate a transplant?  These will not be funny anymore – to those of you who actually think they are now.

I’m not laughing.

Neither are those who really love me, or those who really love a transplant patient.  Families who still have a mother because of a transplant, new parents whose infant would be dead if it weren’t for receiving a transplant.  I’m positive that anyone who drank themselves to cirrhosis and are now alive and thriving because of a liver transplant and a second chance isn’t laughing either.

Take care of your bodies.  There’s so much more to life than this foolishness.  Aren’t we all mature grownups now where it really doesn’t matter how much you drink, when you drink, or what you drink?  Get over yourselves.  Stop making fun of your liver.  One day it just might be laughing at you.

This is what a beautiful, healthy liver looks like.  [via]

This is what a liver abused by alcohol looks like.  [via]

I exhort us all to start making better, healthier decisions.  And if you are going to act irresponsible and trash your liver, just keep it to yourself.  We don’t think it’s funny in the least bit.

You all are so good to me!

Hi everyone,

Just wanted to check in and say, yes, I’m alive!  I haven’t posted in a few days because things have been getting pretty crazy over here while I’m starting to feel better and have my driving privileges back!  🙂  (And what part of that would honestly shock you?)

Health-wise, my incision is SO close to being closed… just a few more days, I’m guessing.  I’m losing a ton of weight due to the meds and my body’s adjusting – I’m just not that hungry.  Ever.  I’m going to call the team about it this week.  I bought all new clothes, and now even they are getting to be too big.  I’m honestly a little worried since I’ve lost over 20 pounds compared to where I was before the surgery.  We’ll see…

I’ve also been working on getting my sleep adjusted.  I have to be on steroids for life since what I had before the transplant (PSC) is anti-immune, and steroids can prevent it from coming back.  If I would have had something not anti-immune, like hepatitis, for example, I wouldn’t have to be on steroids, but unfortunately PSC can definitely be anti-immune.  And a major side effect of the steroids, even though I’m at the lowest dose, is that it can keep you wide awake.  I take it in the morning, and I’m still wide awake at night, so we’re trying sleeping pills, “sleep hygiene” (eg, don’t do anything in bed but sleep – no TV watching!, don’t do anything intense before bed, drink warm milk, etc…) and lots of other fun stuff to combat that.

In much happier news, I wanted to thank a sweet new friend I made on etsy who made me this beautiful quilt and sent it to me all the way from Pennsylvania.  Check out her shop or order a custom quilt!  What a blessing from a sweet sister in Christ.  Thank you so much Courtney!  It’s perfect and so warm and cozy, too!  🙂

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Then, my 1st grade teacher Mrs. H. sent me a goodie basket complete with homemade buckeyes, Hershey kisses, homemade apple butter, and all kinds of good stuff!  She has been so supportive since I started this journey, and she was one of the best teachers I’ve had in my whole educational life.  I’m so glad we’re still in touch!

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Check back Monday because it’s a special date and I’ll have a post up.

And check out the homepage of TRIO (Transplant Recipients International Organization) – they used a photo from the Akron-Canton chapter of TRIO’s website (which I made!) and it’s of me and my TRIO friends at the LifeBanc walk/run last summer.  We’re now internationally famous, haha.

Have a great weekend!  It’s super chilly and cloudy here in Ohio.  Almost all the leaves have fallen, and I’m so excited to get my pink tree and Willow Tree nativity set up in just a few weeks!  Also, I start nannying again this week and am so excited to be with my kiddos again.

Don’t forget to check back Monday.

Love to you all,
Amanda

Before my transplant, I had the opportunity to spend a few hours with a professional photographer, Pam Stepka, and we had so much fun (and talked way too much) as we walked around downtown Hudson.  She shot a bunch of photos of me, both of us fully aware of the upcoming transplant.  Looking back, I’m glad I made the time and then found the strength and endurance to do this. These were done a month before my transplant, and it’s funny because I just don’t know this girl in the pictures.  She’s so different now.  I’ve hesitated to share, I think because I’m not sure what I think or how I feel about these photos, the girl in each one.  I miss the other me, the me in the photos, the me without the gaping incision and immunosuppressant drugs and insanely careful, precautionary lifestyle.  I miss not having to go to liver clinic every other week, getting labs drawn twice a week, and being emotionally tethered to the steroids I’ll be on for the rest of my life.  I miss the days where I didn’t have to record my vital signs into a notebook or call the transplant team for permission before doing anything.  These may just be pictures to you, but the girl in them?  She’s not me, and I think I want her back.

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Two steps forward, One step back

Wednesday was a long day for us, but this is all part of the journey, so here we go…

(As I munch on a farmers market brownie that has an odd taste like it was sitting on pizza in the fridge or something?)

Thanks to everyone’s prayers, Haylie was fine after taking my antiviral pill.  She stayed overnight at the vet for fluids and observation, but we were able to pick her up before heading to Liver Clinic (Wednesday afternoon on CCF’s transplant floor) Look at her little bandage where her IV was (below). Poor baby!

Liver Clinic (Wed) was predictable.  You set up appointments beforehand with the transplant social worker, transplant psychiatrist, or transplant coordinators – whomever you want – plus of course the surgical team. To try and condense my story, the surgeons said my incision looked great, even though it has 2 small spots which are questionably “too open” in my opinion. They surprised me by taking out every other staple and replacing them with Steri-Strips.  The staples were really pulling and being uncomfortable, so I was grateful even to lose half! Then there are the 2 stitches, one for each JP drain that was collecting serosanguinous fluid while in the hospital. Peter, our adorable, caring, Australian fellow removed both stitches as well, and other than all that action on my abdomen leaving me sore, it all went great, and I should be able to get the remaining staples out next Liver Clinic. One week!

My pathology report on my old liver came back and we were elated to hear the news. Thanks to your prayers and our good God, the chemoembolization DID get all the cancer in the liver, and none of it spread to the lymph nodes, which would have been a big concern.  The report did, indeed, confirm I had a serious case of Primary Sclerosing Cholangitis, and it also showed my new donor liver was in tip-top shape!

I met my post-transplant coordinator who will follow and help me for the rest of my life, and she is such a smart, sweet woman.  Her name is Molly, and she works behind the scenes to make life as a patient easier. I met her co-worker, too, who covers for her sometimes, and after passing by my scheduler in the hall, the 4 of us got into a 30 minute shopping conversation about deal websites, flipflops, and tips to make my wardrobe work with my massively swollen abdomen, other than racking up a tab at A Pea In The Pod or Motherhood Maternity!! (Joanna, my scheduler, says it’ll be a month or so until I lose my “baby bump”… not funny!) anyways, everyone says you’d become like family to your team and we definitely have!

We left around 4p with everything going well. I passed Dr. Hupertz, my peds GI, while waiting for Mom to pick me up, and she raved at how well I was doing and encouraged me like she always does.

The car ride was great since I was able to sleep the whole way, but things got bad when we got to my driveway and I saw that the whole side and bottom of my cute lavender top was wet.  I stood up, and fluid literally started spurting from where the doctor removed one of the drain stitches.

Nice.

It was after 4.30pm by then, so I had to page the” liver transplant coordinator on call”, which thank goodness was Molly! We discussed the amount of fluid I’d lost (rolls of paper towels, absorbent medical pads, etc.) and decided a precautionary trip to the ER would be the best idea.

Fast forward to 2am, after some Zofran, morphine, and dilauadid … Labs.. CTscan… All looked normal for a post-surgical patient, so still dripping and oozing, they finally let me go! They found one abnormality in the CT but they were going to clear it with my surgeon, Dr. Fred, in the morning. (And yes, it ended up being normal)

Now if we could just get the fluid to stop leaking… (Although it’s better out than in!)

Oh and we saw 2 separate friends/families we knew in the OR. Please pray for their peace and healing. We already know God is good!

So fast forward to Thursday AM – Mon and Thurs are lab days where I go to my local lab and they overnight some of the rarer tests to the Clinic to save me 2-3hrs twice a week. I barely got to the lab awake, and by then Mom had talked to Molly who had talked to the surgeons… They wanted to see me, yes, back in Cleveland.

Long story short, Dr. Peter had to restitch the drains (even the non-leaking one – just to be sure) and hopefully everything will be healed enough by Wednesday to get the staples and sutures out.

Today, Friday, I’m feeling better – tired and sore, but better. My cousin and her boyfriend came over last night, Grandma and my aunt were here, and Haylie finally got her much-overdue haircut.  I have more visitors coming Saturday and Monday, so that’s exciting.  They help pass the time and it feels like forever since I’ve seen everyone.  I’m hoping in a week, I’ll be stitch/staple free, more healed, and up to a little more.

One day at a time!


(I’m off to take advantage of my Netflix and Roku box while I just might fall asleep!)

Oh and a before and after of Haylie – first confused, missing her mommy, then in the hospital herself, seen here with a bandaid from her IV from her overnight stay at the vet, scruffy hair from Mommy being in the hospital for a week… The the after picture:  after going to Aunt Nancy’s and getting a bath, a haircut, and a festive little bandana.  She feels much better now that she’s all pretty (and back to her sassy self)…

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Thanks so much for your prayers and cards.

xoxo
Amanda & Haylie 🙂