Out Damn Liver! Out!

This was written over a matter of days. Bear with me, I did not spell check or use Grammarly.

Saturday night, October 15, 2016, I found myself alone in the car. Somehow I managed to make it down 14 floors on an empty elevator through a long deserted hospital corridor and over a crosswalk to the parking garage.  I lost track of time and space. Jon’s transplant was scheduled for Monday. As I sat in the car, I thought about the part of my heart that I left in a hospital room 14 floors above me. Before I left, I tried to answer some questions that he had asked in the most positive and encouraging manner I could. I mean honestly, I am pretty resilient and tough. I remembered as I choked & tried to fight back tears as I spoke at my grandmother, Mary Helen’s funeral earlier this year. I actually keep the piece of paper that I wrote the speech on in my jacket pocket in the closet. I pull that paper out when I need a raw dose of courage. I thought about Ash Coffman and channeled the strength that I saw and felt in her writing when she spoke of her grandmother’s dementia this year. I thought about how I took initiative from these experiences and prepared a speech in advance for my beloved grandfather who locked us all away in his mind in the name of Alzheimer’s. All of these things considered, I still found it a little difficult to work around the anger, sadness, and denial that came with reading a piece of paper that states the reason for hospital admission of a 34-year-old person is liver failure and end-stage liver disease.

I thought about random things and luck. Despite his disease and diagnoses, Jon was fortunate. A little background: for the typical PSC (Primary Sclerosing Cholangitis) patient, the MELD (Model for End-Stage Liver Disease) score is not high enough for the patient to be listed as in other types of liver disease. From the mouth of a medical professional, “PSC patients get screwed”. This is in part because of the criteria required for a MELD score that warrants a transplant. I actually stopped researching justification for the criteria simply because it fueled my anger knowing what Jon has faced and what our family has faced over the past few years. However, after several people were denied the opportunity to be donors for various medical reasons, Andrew stepped up and our lives changed.

#damnliver #teamterauchi photo Courtesy of Jackie Spivey Photography

I thought about people asking me how I smile through it all. Sometimes I wonder if it is a talent I was blessed with or maybe some sort of ironic preparation for a meltdown that will certainly occur at some point. Whatever the reason, regardless of my feelings, I still manage. I smile for many reasons. I smile for my children, I smile for sunshine, I smile for hope, I smile for grace and the gift of every day that we are given. If the smiles stop, I think a chain reaction of emotions will sabotage any ounce of composure I have left. As I drove to our home away from home in Dallas Saturday evening, I thought about the Langston and Hays family who are sources of inspiration and strength. Each family is faced with completely different yet similar trials and still find reasons to smile. I thought about what I have learned on this journey. The strength I have gained from the wisdom and faith of others is humbling.

Monday crept up stealing the last few minutes of Sunday’s anticipation and brought with it anxiety, fear, but also an eerie sense of calm that I can only claim in the name of the almighty through the many prayers, thoughts, good vibes, and words of encouragement and comfort that so many sent. Then the paradox of calm and goodbyes collided. There are songs, poems, and even movies about goodbyes that make people bawl. The most difficult goodbyes I have ever said were to Andrew and then Jon both within an hour or so. I realized that I had no control over anything as they rolled away. I had to find the faith and then let go. It sounds so surreal now, but at those moments my fear was real. I still managed to hold myself together.

Jameson, Blakely, and Jon before his transplant.

I lost track of the hours and found myself in a daze as I walked to Andrew’s ICU room where I was overwhelmed by the act for which I would never be able to thank him enough. He is undoubtedly my hero. Later when the call came, I hurried to Jon’s. I was numb. I was numb to the bone. Tubes and lines were everywhere. He was surrounded by machines. I just stared. I knew that he couldn’t see me. He didn’t even know I was there. He wasn’t even breathing by himself. I knew he wouldn’t see me if I cried. I couldn’t cry because I was too happy. It wasn’t time to cry even though I probably really needed and wanted to if only for cathartic reasons. Two people that I love dearly were now joined by more than brotherly love. They literally shared a liver!

The 10 year twins seeing each other for the first time after the transplant.

On Tuesday Jon was moved from the ICU to his room at 14 Roberts the Liver and Transplant Floor. The day flew by with beeping and whirring pumps and mechanized machines. Wednesday came with me watching Jon struggle with relentless pain and nausea. I missed my babies, I missed my home, I missed my friends who comfort me and support me. I wanted to scream. I wanted to hit things. I wanted to throw a tantrum like a two-year-old and cry out. Looking back, I am 100% sure I would have been escorted to the psych ward had I not been able to control myself. I don’t remember much about this day other than how I just described my frustration and the inability to help the man that I love. The fact that we are covered in grace probably saved me once again.  I say once again because many times this week things were out of my control. However, I managed to hold myself together

In the grand scheme of things, my time came Wednesday night. I was standing in the doorway of 14 Roberts beside the nurse’s station and behind Andrew and Ashley. I was dumbfounded when I heard cheering and saw pompoms shaking in the air. It was quiet time, what was going on?! The green and white pompoms were held by nurses who were also clapping and cheering. Ashley filled me in on what was happening. Next, I saw a hospital bed roll past me with a thin, frail body, yellow jaundice eyes, and the biggest alligator tears that you can imagine. “It’s a parade, he is getting a liver!” she said. He was getting a liver! I felt myself shaking inside as I began to tear up. It was inevitable that he, the frail human on that bed, did not have a brother like Andrew. He was getting HIS liver because someone that he had never met had chosen to be an organ donor. I broke down. I thought about the circumstances that lead to this. I just let myself go because I saw the grace in it all. I cried happy tears and I smiled on that elevator for the 14-floor ride. I cried because Jon had a liver and I cried because I saw the other humbling side of the fence where hope and faith were all that one had left.

The #damnliver is gone and the new one is “beautiful” according to the transplant team and “sparkly” according to Miss Blakely!!

I know the coming days will be challenging and trying as the healing process and life adjustments continue. I want to say thank you again from our family to the hundreds of friends, friends of friends, family members, and medical professionals who have prayed, encouraged us, comforted us, sent good vibes, and supported us in so many ways before, during, and now after Team Terauchi’s living donor liver transplant. If you have not considering being an organ donor, I want to encourage you to visit https://www.donatelife.net/ to learn the facts about organ and tissue donation.  Please consider giving the gift of life or donating blood!