Our Story

BRIEF STORY UPDATE with continuing celebration and prayer for the future (03/13/2023) Today marks another wonderful milestone in my journey.  I started my new job as a Registered Nurse at Cincinnati Children’s Medical Center—the same hospital where I received my liver transplant September 2021. I won’t be working on the transplant unit—not sure I could handle that emotionally just yet—but I will be working just down the hall in a related gastro-intestinal unit.  I took my RN license exam on 3/2 and was notified a few days later that I was now a Registered Nurse.  My parents helped me move into my new apartment on Saturday, just 20 minutes from the hospital.  While I am still a little bit nervous about this big step towards ‘adulting,’ I am thrilled to make it to this point.  I am so grateful to God, my parents, all the staff of CCMC, COTA and its supporters, and all our friends and family for helping me through so much to this point.  I can now realize my dream of giving back.

BRIEF STORY UPDATE with celebration and prayer for the future (12/17/2022) Twenty-three years ago today, at just seven months old, I received my first liver transplant. Last year, I received my second. And today, I received my B.S. in Nursing from Kent State University. I thank Tina, my first donor (first non-related living liver donation at Johns Hopkins); I thank my second (unknown) donor (and their family); I thank my own family; I thank all the doctors, nurses, and many others involved; I thank the many friends who have supported us with prayer, encouragement, and other gifts; and most of all I thank God that He has brought me through all of this to the point that I can now serve Him by caring for others. Hallelujah!

BRIEF STORY UPDATE (03/03/2022):  After months of internal bleeding, horrible side-effect headaches, a brief few days allowed at home, and multiple false-hope calls (i.e., come fast, we have a liver, so sorry, no we don’t), I received my second gift of life (liver transplant) on September 10.  Amazing everybody, I was discharged (to a nearby hotel) just six days later.  But then a very disappointing setback as I was readmitted three days later with a liter and a half of leaked bile damaging my new liver and everything else in my abdomen—leading to a second major surgery, infections, lots of other procedures, and oh so many medicines.  I was finally discharged (to stay in a nearby hotel again) and readmitted several times (due to high blood pressure and unrelenting pain) and then finally returned home 11/09.  Then, another setback.  The night before Thanksgiving (11/24), I was readmitted with what turned out to be colonic pneumatosis due to a Clostridioides difficile (c.diff) infection.  This long and painful part of my journey forced me to spend most of the holiday season quarantined in my hospital room, forced our family to cancel our December vacation plans (with monetary losses), and threatened even just being home for a Christmas dinner with my family.  Fortunately, I was able to finally return home on Christmas Eve.  The New Year then brought a roller coaster of ups and downs, including hospitalizations for a nasty bout of COVID and several other infections.  It seems I just get going with recovery and restrengthening and something else pops up.  Though I am still struggling through these, the doctors still seem confident for my overall eventual recovery.  [See Dad’s blog for past and continuing details.]  And here is the story of how I got here…

Hi, I’m Elizabeth.  As I am stuck in the hospital waiting and praying for a new liver, I cannot help but reflect on my last 22 years of life.  You see, the impending transplant will not be my first.  Of course, I don’t honestly remember much about the first because it happened when I was only 7 months old.  It was a gift—from an incredibly selfless living donor whom we did not know just weeks before the surgery—that gave me more than 20 years of life.  In fact, it was the first time Johns Hopkins had done a liver transplant from a non-related living donor.  And that gift has grown with me and served me miraculously well, but now the doctors say my only hope is for another transplant, and this time I need a full adult liver.

Since my birth, I have spent about a quarter of my life in hospitals, clinics, doctors’ offices, and emergency rooms.  I was born with a rare liver disease called biliary atresia.  It causes the bile ducts inside and outside the liver to not have normal openings which then causes the liver to fail.  At 6 weeks old, after my first surgery failed, I needed a new liver or I was not going to make it past 7 months.  Miraculously, my uncle’s friend was a perfect match and donated a lobe of her liver to me just in time.  Another few weeks and I would have died.  Unfortunately, I have continued to have other complications due to all this.

At four years old, I began bleeding internally from gastrointestinal varices due to portal hypertension.  My liver was growing with me but the connections to it were not.  Following a medevac helicopter flight, I was hospitalized for eight weeks straight and then another two for the surgery to fix the problem.  Then at eight years old, I had more internal bleeding.  This kept me in and out of the hospital every month for two years—including another surgery which I almost didn’t survive.  In the ICU, I received 10 units of blood in less than 4 hours.  It was another miracle that I survived yet again.

More recently, in February 2016, I was diagnosed with gastroparesis, a condition in which your stomach does not digest food as it should.  The condition causes frequent nausea and fatigue, and I have had horrible stomach pain.  It seems that I can never really enjoy anything without a fear of something going wrong and having to go to the hospital yet again.  But I adjusted my diet carefully and managed that condition to try to live as normal a life as possible.

Throughout all this, I’ve been fascinated by the doctors and nurses; how they knew so much about the human body and how it worked.  Their hands moved with purpose and confidence.  As a high school junior, I took Anatomy and Physiology, where my passion grew even more.  I knew then that I needed to be a nurse, I needed to excel in my academics and strive for the best.  I enrolled in honors and AP classes when I could and strived to do better every day.  If I was sick from one of my numerous health issues, I would find a way to get my schoolwork done.  Whether it was emailing my teachers for my work or getting notes from a friend, I would get it done as soon as possible to not risk falling behind.  I even managed to become a leader in the Color Guard of our school’s marching band and stay very active with the school’s Thespian group.  In my junior year, I was also inducted into the National Honor Society.

Meanwhile, as all this happened, my family continued from one financial struggle to another.  As my Mom held my 6-month old body in the hospital, praying for a new liver, my Dad was being laid off from his job.  For several years, we struggled by on savings and credit as he tried first to start his own business and then to find another job.  When he finally got a job—which moved us halfway across the country—it seemed like an answer to our prayers.  Then, we got caught in a perfect storm of circumstances—amidst a national housing crisis—that left us paying on four mortgages (2 old and 2 new) for more than a year.  That left us deep in debt just as Dad’s new employer decided that, instead of an expected raise, they had to cut everyone’s pay.  And of course, while Mom (a registered nurse with decades of experience) was taking care of me (something to which my Dad credits my survival as much as the doctors and hospitals), she couldn’t work.  So, we lost that income as well.  We spent years digging out from the debt; but even this had a positive side.  While so many of my friends seemed to have so much handed to them, I learned the value of saving and earning for things I wanted.  Furthermore, I learned what things, like family and God, are most important.  I am happy to say, we are now blessed to be debt-free (excepting a very conservative mortgage and our modest student loans) and Dad currently has a good income and benefits to support us.  But even so, the medical bills have been significant year after year, even before the upcoming transplant.

I also learned, even in difficult circumstances, to help others in more need than I was.  Over the years, my twin sister (with medical challenges of her own) and I made blankets for the Linus Project; served meals monthly to the homeless of Columbus; collected, sorted, and packed food for the Dublin Food Pantry and the Mid-Ohio Food Bank; baked cookies at the Ronald McDonald House; helped teach Native American children on the Hopi reservation in Arizona; and helped with many church yard sales and service projects.

As a high school senior, I looked forward to college and earning my Bachelor’s degree in nursing.  In fact, I hope to go even further and become a Nurse Practitioner someday.  I want to combine the skills and knowledge of such an education with my own challenges and experiences to give comfort and healing back to others the way so many have done for me.  In college, I continued to study hard and work hard—maintaining a 3.8 GPA.  Meanwhile, I also earned my Ohio State Tested Nursing Assistant (STNA) certificate so I could earn money to pay for college by working part-time and summers.  This also had the added benefit of enabling me to experience first-hand the giving (rather than receiving) of bedside care.

I was in my final semester of college—so much looking forward to getting my BSN and RN license and starting my career—when I felt like the rug had gotten pulled out from under me.  Abdominal pain, not just the gastroparesis kind but worse, took me first to the urgent care center and eventually to where I now sit.  The intestinal bleeding has started again after more than 10 years.  And after much scanning and testing and probing and poking, we discovered that it had suddenly become imperative to do another transplant.  The life-saving solution for a 7-month-old baby had been stretched to its limit and again I would die without a liver transplant.  While the doctors struggle to control the bleeding, we wait for a new liver.

It’s a bit odd being 22 years old in a children’s hospital.  We had recently talked about transitioning me to an adult facility but for various reasons had not done so yet.  Now it seems God knew that I would need the people who were most thoroughly and intimately familiar with my history to take me one more step before I launched fully into the grown-up world.

I had not been seriously considering pediatrics as my specialty—and might still choose something else—but it has been very uplifting to have this final chance to see the way the doctors and nurses of Cincinnati Children’s Medical Center work so well as a team, caring not just for me but about me.

What will my future bring?  Nobody can say for sure but I am very hopeful for a life of giving back.

If you’d like to join me in this journey to and through another transplant, I invite you to subscribe for updates to this story and the blog that my Dad will be maintaining.  Thank you for your interest, your prayers, and any other support you can provide.

4 thoughts on “Our Story

  1. Thank you for sharing your story and testament. Your faith in our God fosters hope for us all. Our prayers are with you and your family. We’re thankful for God’s blessings to continue to shower upon you.

  2. It’s been a long journey to this point for both of us. You are amazing. Wish the liver had lasted longer, but hey, how it goes. My thoughts are with you and everyone in your family. Hugs

  3. My thoughts and prayers are with you and your family. I admire your determination and drive to excel despite your life’s challenges.

  4. What a story…you are a beautiful soul. You have such a loving dn supportive family as well. Sending prayers, love and light your way. God bless

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