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Aglimpse into my mind. My dad? Dying? Liver Disease? No—liver disease is for alcoholics—or people like my Uncle who have hepatitis. Uncle Al is dying of liver failure, Daddy is dying of liver failure, and the physician just told me I have high cholesterol, which could lead to obesity and liver failure. I am going to stop this cycle right now—I know it is me—out of all my siblings, I am going to save my dad’s life. This must be why all my sisters are short and skinny and I am tall and big boned—your liver has to be a certain size based on body type to sustain your own life and your recipient’s life. [End Page 21]

These were some of the many thousands of thoughts that raced through my mind from April of 2010 until today. Looking back my family and I can remember that something had been different about my dad during the previous three years. He was usually a sporty, outgoing, and active gentleman, who enjoyed tennis, fishing, and international travel. He was the president and owner of his own company and had been with his fiancé for over 10 years. He just started to slow down. He gained weight, suffered a heart attack, developed diabetes, and was depressed. Doctor’s in his hometown couldn’t seem to pinpoint and link his symptoms. It was not until two days before my college graduation that my world really start to unravel. My dad’s fiancée called hysterical—I just found your dad, unconscious in a pool of blood and vomit on the bathroom floor—he is being rushed to the hospital.

I have heard people describe how the world stops when they experience something traumatic, but you will never understand until it happens to you. I could not breathe. I could not move. My dad—my big, tall, strong dad—my hero, my protector, the number one man in my life, and I have no idea what will happen. It was after my father’s varices bleed that almost took his life that my family decided to seek treatment for my dad at a world renowned hospital.

We were thrilled at finally having answers and a plan, although the plan was not what we were expecting. Dad had little day to day functioning abilities, and could not even use the bathroom unassisted. If it were not for my little sister moving home from France to live with dad, we would have had problems. She spent her whole summer transporting him two hours back and forth to the doctor’s and taking care of his needs, along with my dad’s fiancée who was working to support them and taking care of him. (Side note: they both still suffer from PTSD and Depression as a direct result of dad’s illness). We were told that dad would be put on the transplant list, but that he would be low. He was sick enough to need round the clock care, but not sick enough to receive a liver soon, and while he waited the chances of him being healthy enough to survive a surgery diminished.

I knew the minute that I heard living donation was an option that it was going to be me. I can’t explain it but it was a gut feeling. I felt like a hero, excited at the thought of being able to give the gift of life. All throughout my days of testing pre–transplant I was like a small town celebrity. Everyone congratulated me, told me how brave I was, and showered me with attention. Then as the days progressed I became confused—wouldn’t anyone do this for their loved one? The process had been explained to me, risks, death, and everything, but wouldn’t everyone at least try to save their dad’s life. I guess not. I was not a hero. In fact I was angry at myself. I was not doing this for my dad, but for myself, because the thought of living without him was so terrifying I couldn’t even process it. I had feelings of shame for being so selfish. I have three close friends who do not have fathers, and I got 24 wonderful years with mine. Then PBS approached me to do a documentary. I thought well, this is a way to get the word out to others that lives can be saved through living donation, and I did not feel selfish anymore.

Right before my October 5, 2010 transplant the fourth death of a live liver donor occurred in Colorado Springs, CO. It was like no one I knew would even talk about it. People were so scared that they pretended it did not happen. My family was angry at me for wanting to discuss it. I wanted to talk about my will, where my dog would go, tell my boyfriend of three years to move on as quickly as possible, but no one wanted to hear that. I just needed to know my life was in order before I underwent surgery and no one, not one person wanted to talk to me about dying, even though it was a possibility.

The night before surgery I actually slept well with my mother and oldest sister. My dad had been admitted to the hospital the day before because at his pre–transplant appointments—his ammonia levels were so high; he didn’t even know his own name. I left my hotel and walked to the hospital at 4:30 a.m. I sat on my dad’s bed before going down to check in. I was strong for my dad. I felt like our roles were reversed. He was the child, and I was the big strong support. As I told him I loved him and walked out of his room, I burst into uncontrollable [End Page 22] tears. This was possibly the last time that I would ever see my dad. I doubted my decision at that exact moment, but not for the reasons everyone thinks. I was scared that the doctor’s had not done a good enough job making sure his body was healthy enough and strong enough to undergo such a traumatic surgery. Then, what if he died on the table? Where would my liver go? They better give it to someone else! I found out later that that was not an option. I was so angry that if dad did not survive then no one would benefit from my liver. I was led down to a room to put on my hospital gown and say goodbye to my family. I walked with a group of other patients who were having other surgeries that morning. I could tell though that nurses paid extra attention to me, as my surgery was not as routine as others. I cried as I walked freezing and naked beneath my robe, terrified. I sat in a bed for over an hour, alone, with only the IV beeping to keep me company. Someone? Anyone? Please talk to me; please reassure me. I don’t want to be alone right now. Finally, my surgeon came for me. I laid down on my gurney and was rolled through the halls, crying thinking about my dad. Was he in pain? What if I never saw him again? The hustle and bustle of the surgery room was overwhelming. There were upwards of 45 people lining the halls and in the room. Doctors, nurses, anesthesiologists, assistants, medical students, fellows, but no one I had ever seen before, not that I would have recognized anyone as they were all wearing masks and hats. That made it worse. My last thought as they told me to start counting backwards—Daddy, are you proud of me? I know I have made mistakes; so have you. I am proud to be your daughter—are you proud to be my dad?

I woke up in a very dark room, feeling as though I was dying of thirst. I could hardly breath I was so thirsty. I could hear my mom, and my dad’s fiancé, my doctor’s nurses—“is dad alive?” “Yes, he is in recovery.” “Don’t lie to me Mom, Doctor, is my dad alive?” “Yes Amy he is doing well.” Okay and I faded back under. I do not remember being in any pain the first few days. My mom said I woke numerous times, but I remember none of it. Next thing I remember I woke up in a beautiful room on the transplant floor. I was groggy and not in much pain. I had an epidural and a morphine jolt every ten minutes. Little did I know that at that very moment my body was turning on me. I had a bowel perforation and it was slowly poisoning my body. As my doctors tried to force me out of bed three days later, and I screamed in agony they knew something was wrong. Five days post donation I was back on the operating table for the second time, even more scared than the first. After my second surgery my mental health took a turn for the worse. The only enjoyment I got was when I saw my Dad. He walked the halls and immediately was in a better state of mind than he was before surgery. Nothing and no one prepared me for the mental toll of the 30 days I laid in the same room, surrounded by the same people, in the same horrible bed, the night sweats, nightmares, painful shots, horrible back pain from immobilization, the tubes sticking out of my body and neck, the medical students who were not gentle or nice. One day I told my mom that I wanted to jump out the window—suicidal? Not me—I am a graduate level professional trained to help other people with suicidal ideations. Was I depressed? I was so uncomfortable. Not really in pain, but uncomfortable. In the 30 days I lay in my hospital room, not once did I see my psychiatrist or social workers, who prior to surgery were adamant about my mental health. I did not see my heptologist whom I had formed a relationship with over the last four months. I felt abandoned by these people. I felt even more abandoned after I finally retuned home to St. Louis. I was so important and sick at the hospital, but even though I returned home with an open wound and could barely do anything on my own, I was alone. I had numbers for emergencies but ultimately I did not matter anymore.

No one prepared me for all of the medical setbacks my father would encounter, and I was angry, so angry for a long time. I was not prepared for the seven to eight months it took for him to even begin to regain his old life. It was very hard, because we had just created this miracle but it was not working in the way that I had wanted it to. Again, I am being selfish, and even if my dad died tomorrow, I should be thankful for the wonderful Christmas at home [End Page 23] our whole family spent together. I often still struggle with feelings of anger and shame over my emotions.

I have returned back to my normal life at home. Working, furthering my education, planning my wedding and living my life. Dad has returned to his, and life did not change. I am not the princess daughter or held on some pedestal by my father. That is perfect for me; I don’t want to be remembered as a hero, I want to be remembered as someone who spread the word about live organ donation. I am sure the process of live organ donation improves with each donation. The people I have encountered during our journey have forever touched and inspired me to be a healthier and better person. I want people to know live donation is an option, and even though I experienced life–threatening setbacks and complications, I would make the same decision 100 times over again.

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