I met Roger, my future husband, at the house that is now our home. Roger had just settled into the two-acre country home. The story behind its discovery was both a tragic and dear one. The prior tenant had become like a mother to Roger. With a 20-year career as an advanced-life-support EMT behind him, my husband administered strong pain medications every few minutes as she died of liver cancer. What would soon be my home was originally built as an attached apartment for this kind woman’s live-in nurse.
In searching for an apartment, I had contacted a local church and been directed to what would be the beginning of our love story. I learned about my husband through the pastor, who spoke reverently about the man who was to be my close neighbor. There was sadness in his eyes as the pastor spoke of the health struggles that had touched this parishioner’s life and the lives my husband had eternally changed as he walked alongside others with chronic and terminal illnesses.
When I met my husband, there was a gentle way in him that affected me deeply. When he smiled, it was tinged with pain. Life experiences had clearly shaped his understanding of the human plight. I remember thinking, as I walked away from our first meeting, that I had a lot to learn from him.
We became fast friends. We both loved animals, writing, history, and shared the same faith. Throughout this period, my husband hinted at an extensive medical history but didn’t always share details. I listened but hesitated to push him to share painful memories.
Our friendship deepens.
After two years, we had fallen in love. It was different than I ever imagined the love between a man and his bride would be. It was softer but deeper somehow. I would do anything for him. And I knew he would do the same for me. A year and a half later, the same pastor who had brought us together married us.
I had come to know my husband was never free of pain. In the months following our wedding, as I fell still deeper in love with him, I struggled to accept this as his enduring fate. I prayed I could take it away somehow. Despite the struggle, we became heavily involved in living history, traveling, and adopting a pet family of our own. I began to build my business as my husband coached me and cheered me on in the background.
One part of marriage that surprised me was that we never fought. I had always heard the first couple of years of marriage were an adjustment that often came with disagreements. I had come to expect the first two years would be challenging but worth their reward as a life-long foundation of deepened mutual understanding was formed.
What I didn’t imagine was our first two years of marriage were going to be a different kind of difficult. As the months passed, my husband grew weaker. Within nine months of having married, he was sleeping several hours throughout each day.
Our search for hope begins.
After our first anniversary, he began to worry his memory was failing him. His concerns made me pay close attention and I began to see it, too. Little things he knew well about our forming life together would slip from his memory overnight.
We loved to travel. We visited our honeymoon spot, Gettysburg, Pennsylvania, several times a year. Those journeys were a time to cherish a loving marriage and learn more about each other. We loved meeting other couples who shared our love of history. Gettysburg was our home away from home, full of friends, deepening bonds, forming traditions, and memories.
In June of 2017, as Roger and I traveled the familiar roads to Gettysburg, we looked forward to a few days of history events and meeting new friends. During that week, new and old friends surrounded us as Roger’s weakness became acute and apparent to all. They asked to pray for him. They knew something was wrong. I hoped our travels had merely strained him.
On our way home, Roger asked me to drive. He had never done that before. After years on the road as a truck driver, I knew he missed it. As I settled in the driver’s seat, Roger fell into a deep sleep.
I woke him gently when we arrived home. As we unloaded our Gettysburg treasures, our beloved Pit Bull went into labor. Between the birth of her second and third puppy, I knew something was wrong and went to notify Roger she needed a veterinarian’s care. As I stepped into our main bedroom, in one instant, my whole life changed as Roger spat dark red blood across the room. At that moment, desperation for hope entered my life and saturated my every waking thought.
He had told me he struggled with liver disease since childhood but, with little more information, I had never expected the scene before me. As I tried desperately to understand what was happening, my husband eased me into a conversation about liver failure and the cancer that often accompanies it.
In the ER, an army of doctors, nurses, radiologists, and phlebotomists surrounded Roger. Some worked to strengthen and protect his heart. Others ordered scans and tests to locate the bleeding. Still others pumped him full of unidentifiable liquids. Throughout the next two weeks, Roger gained 50 pounds in liquid and slipped in and out of consciousness and coherency. During that time, I heard devastating words like “liver failure,” “cancer,” “transplant,” and, at times, “hospice.”
I searched desperately for answers, for hope, even as doctors could offer very little. Unable to find comfort in their diagnosis and prognosis, I scoured the Internet searching for a way forward, searching for a way to take this horror from my loving husband.
After hours of searching, I landed on a page of hope. I read about a daughter who had donated more than half of her liver to her dying father, then watched him come back to life. I cried and pleaded to God that this would be our story. Friends and doctors gently expressed their doubts.
Our hope dims.
After a slow and uncertain stabilization, Roger was referred to the University of Virginia (UVA) to be evaluated for a liver transplant. Through two days of life-or-death testing, we lived on bated breath as a team of unknown doctors discussed my husband’s and my fate, negotiating whether he was a candidate to receive a liver from an already overburdened organ-waiting list. Some feared my husband was too far gone to survive the wait. Others wanted to offer him the chance to fight. All sought testimonies from us about my husband’s will to live and determination to fight for his life.
After two days, we were sent home to await the final decision. Over the next two months, the local hospital became a home away from home as Roger went in and out of stability. I grew close to nurses who hugged and cried with me in the hallways and prayed over my husband in his fourth-floor room. Between and amidst 911 calls, I received and made daily calls to UVA, searching for hope, pleading for approval for my husband’s organ-wait listing.
All the while, my hope dimmed but I refused to let it grow dark. As the cancer grew, my biggest nightmare became the day it would spread outside of his liver and disqualify him from being listed. A lung cancer scare brought me to my knees before my God as helplessness enveloped my being.
I became accustomed to the fear-filled morning reviews of new online test results, doctors’ notes, and upcoming scheduled appointments. On a mid-October day, my hands trembled as I clicked on a new letter from the transplant coordinator. Too many times before, that click had meant devastating news. But this time was different: hope was waiting. Roger had been listed.
Hope brings a calling.
Roger’s listing meant I could begin testing to be his liver donor. A few days later, we journeyed the now all-too-familiar roads to UVA for living donor testing. On the way, at times, Roger became incoherent and difficult to wake. Even as I increased his medicine dosage to remove toxin build-up, I feared we were headed into another on-the-edge-of-death episode. I prayed I would be his match and that the news would come in time.
I feared leaving Roger alone in the hotel room but knew I could not miss my first day of testing. After two appointments, I returned to find the most dangerous time in our journey had begun. Roger was unconscious, obviously after having passed out across the bed. I tried waking him and asked him if he knew who I was. Toxins had filled his brain and he did not recognize me. He could not sit up on his own and quickly returned to a deep sleep. Unable to lift him, I called 911.
Roger spent the next four weeks in the UVA intensive-care unit. He was bleeding again. Surgical attempts to stop the bleeding only produced more bleeding. As his blood pressure dropped, he lived from blood transfusion to blood transfusion. Growing weaker, he was deactivated from the organ wait list. Doctors feared he was no longer strong enough for surgery.
Still, I continued with testing, praying a window of strength within Roger would make a transplant possible. After two and a half weeks curled up next to him in the ICU, he briefly woke and knew who I was. I listened as he told me he loved me and promised to keep fighting.
As I leaned in to hear his quiet voice, a call came in. Rushing to the phone, I knew the verdict was in. After months of one never-ceasing prayer that I was Roger’s liver match, a sweet, tear-filled celebration followed my “hello.” I was his match. As Roger slipped back into unconsciousness, I spoke to him of hope, love, and pleaded with him to keep fighting.
For the next week and a half, UVA’s transplant team fought to stabilize Roger, seeking that window of strength that would make our surgeries possible.
For sometimes weeks at a time through our battle, as a failing liver created a toxin-filled brain, my beloved Roger didn’t even know who I was. So, like many families, I had to watch as the love of my life lived on the verge of death while believing he was alone. The journey is understandably more traumatic than many families can bare, and, for many, there is no light at the end of the tunnel.
Living donation binds two as one.
But, for us, the fulfillment to my most fervent prayer, living donation, brought restoration, not just of body, but of the beautiful “us” I had so desperately grieved.
On November 30, 2017, over a 10 and a half hour surgery, my husband and I became one as UVA surgeons removed Roger’s cancer and disease-ridden liver and replaced it with more than half of my own.
We returned home just days before our second wedding anniversary. Over our first two years of marriage, we had fought together and become as one. As we recovered together, we embraced a foundation that would endure no matter what may come.
Will you be the next family’s hope?
As we celebrate a new life together, we can’t help but think of those left behind. As more than 121 thousand U.S. families wait for their hope while on an overburdened organ wait list, 22 people die a day. For my husband, the wait would have been too long. Had it not been for the miracle of living donation, he would not have survived.
The good news is, living donation is not just an option for family members of those dying. Everyone has the power to step forward and get tested to restore life to a dying person and hope to a grieving family. If you would like to know more about becoming a living organ donor, please visit The American Transplant Foundation website, or click here. As living donation did for my family, you just may offer hope in a family’s darkest hour.