The Essence of Giving—A Transplant Story
I think I’ve always believed in giving of myself to serve others. Looking back, I’m a little surprised that personality trait didn’t lead me to becoming a firefighter, police officer or even pursue a career in the military. Instead, I was a professional singer, a cruise director on luxury ships and had recently begun a new career as a financial advisor with a major brokerage firm before volunteering to become a liver donor.
Through a sales contest early in my new career, I won a two–year coaching program that gathered for three–day training weekends every quarter in New York City. Between weekends, we were matched with daily partners, adding to the continuity and accountability. Twenty–two strangers began and a close–knit group of friends graduated. Initially, I expected the purpose of the program was to help us grow our careers, but ultimately it became a vehicle to build and live a life of higher significance. One of my daily partners was Mike—a strong, thoughtful and caring man in his mid–thirties. Mike was married with three young children and already a successful financial advisor. We were a year into our coaching program before he told the group he was suffering from primary sclerosing cholangitis. At some point he would need a liver transplant. Meanwhile, his disease left him susceptible to contracting cancer.
I don’t recall how I first learned about living liver donation. It seemed almost miraculous—and a solution to Mike’s problem. Best of all, it was something I could do. Without discussing the subject with my wife first, I asked Mike to consider me as a possible donor. I was extremely healthy and fit. I never smoked and didn’t drink. I was sure I had the healthiest 39–year–old liver he could ever find. And if donating part of my liver could give my friend a chance for his kids to get to know their father—this father—well, that was worthwhile. A transplant was Mike’s opportunity for a second chance at life. And it was my opportunity to live without regret. It was impossible to not try. My offer was sincere, but was immediately dismissed as Mike confided that several family members were waiting in line as potential donors.
Months later, after no family members were found to be compatible, I received a phone call from Mike asking if I was still serious about my offer. This time, I went immediately to my wife and told her what I wanted to try. She never hesitated and never wavered in her support. Much later, Tammy told me that the look in my eyes and the conviction in my voice was enough to convince her of my resolve and that she would support me. I selfishly never asked or fully understood her concern and worry for me. I think we both looked at this opportunity as a higher calling in my life. This was one of those moments that allows you to make a real difference. But, the recipient was also someone Tammy had never met. We lived in Kansas City and Mike’s family lived in Pennsylvania. It was clearly time for introductions. Tammy joined me as we traveled to Pennsylvania for donor compatibility testing.
Mike’s insurance covered the testing for two potential donors and that limit had already been reached by family members. To go forward with my testing required a $25,000 deposit to be paid to the hospital which would be reimbursed by the insurance company if we went through with the surgery. When word of our plans spread to our coaching [End Page 14] group, they quickly rallied and sent $25,000 to Mike within a matter of days. Incredible.
Following four days of extensive tests and psychological interviews, I was pronounced to be a perfect, textbook candidate. To this day I don’t know why, but I did very little research of the surgical procedure and the risks involved. Looking back, I believe I had confidently decided I was meant to do this. I felt I could see my life decisions leading me towards this event. The doctors carefully described the procedure and what I should expect during the lengthy recovery. I acknowledged my understanding, but never actually believed the rules applied to me. If recovery was to be 6–8 weeks, I was mentally preparing myself to recover in 3–4 weeks. After all, I was going to save my friend’s life. I felt like a low–level super hero. I was so focused on the transplant and preparing for the actual event, I gave little attention to the risks I was accepting and the effects it may have on my wife and family. What if I have a reaction to being under anesthesia so long? What if my liver regeneration doesn’t go well? What if I die on the operating table? I was informed of the risks and statistics, but didn’t believe those facts related to me or my doctors. I had trust in my surgeons’ skills and faith in our purpose. I simply knew that I could save my friend. Surgery, pain and healing were nothing more than small sacrifices I accepted in order to save Mike’s life. It was a worthwhile trade. I felt well prepared for everything except an unsuccessful surgery.
The morning prior to our transplant, I was called in for a final examination. My mother, a registered nurse, was not in favor of my decision to be a living liver donor. She knew the risks all too well and didn’t approve of her son walking willingly in the path of all that could go wrong. Her concerns were amplified by my decision to accept this burden for someone she had never met. Our lead surgeon requested my mother and wife to join us in the exam room. I was impressed with how well he read the personalities and emotional states of the three of us. He gave very little attention to me for much of the conversation. I was fine with that, because I was ready to get started. Another 10 minutes of questions and answers were directed with my concerned wife. The next 45 minutes were focused like a laser on my mother. He described the procedure in detail, answered her questions at length until she exhausted all her inquiries. My surgeon finally asked for privacy to complete his final exam with me before the next day’s 4:00 a.m. operation. When the door closed, I was surprised to learn there was no final exam. Instead, we had a private conversation. “Never forget that the donor’s health—your health, is the first priority. From now until the moment we put you under, you can back out. This discussion is between you and me. Just ask to speak with me at any time and I will be prepared to offer a solid explanation for aborting the transplant.” When I think of our conversation, his offer brings tears to my eyes, but at the time I only recall saying, “That is very kind of you, but I didn’t come this far to back out. Let’s do a liver transplant!”
Surgery did not go as planned. I was the first to go in with Mike’s operation starting an hour later in the adjoining room. Four hours in, after I was pretty much taken apart, my doctors prepared for the resection of my liver. Next door, Mike’s surgeons were readying to remove his diseased liver. At that moment a very rare form of previously undiscovered cancerous tumors were identified in Mike. My understanding is they aborted the transplant immediately. We would not be successful and all they could do was begin the lengthy process of putting us back together again. We were to be the first adult–to–adult living liver transplant in one of the leading transplant centers in the world. But instead, we were losing the game and learning there were new rules which were out of our control.
Upon waking up from a nine–hour procedure, my first words to the surgeon were, “How’s Mike?” I cried uncontrollably as he held my hand and told me what happened. Still under the effects of anesthesia, I couldn’t comprehend the outcome. Can we do the transplant later? Why didn’t we know about the cancer? I wasn’t even sure that we had gone into surgery.
I believe the unsuccessful outcome negatively affected my own pace of recovery. There was no finish line, no victory; just my friend in a hospital room at the far end of the hallway who was [End Page 15] suffering from a deadly disease and I failed in my efforts to help him.
The next seven days in recovery were rough. I don’t have a complete memory of them. My recollections are very disjointed. Pain management was the major focus of my days. I found myself with a high degree of claustrophobia and frequent anxiety attacks, particularly at night. I would call to the orderlies and nurses to keep my door open and I couldn’t stand being connected to all the tubes. Pressurized wraps were placed on my legs to keep my circulation flowing. The feeling of being bound and confined added to my claustrophobia. Slowly pacing the hospital corridors throughout the night was my only relief from the anxiety. Another surprise was waking from surgery to find I had absolutely no feeling in my right hand. I’m told I spoke of that a lot—to everyone! My doctors explained that a nerve was likely pinched due to the awkward position in which my right arm was placed for nine hours. They assured me that feeling would come back soon. It actually took several months before a tingling sensation began moving from my pinky finger towards my thumb and forefinger where it abruptly stopped. Weeks later, pain would unexpectedly shoot through my hand and wrist any time, day or night. My thumb and forefinger remained numb for ten years. I was surprised the day I realized I actually had feeling throughout my entire hand. Only a very slight numbness remains today. That was one of my connections to Mike. I sometimes miss it now.
Following our unsuccessful liver transplant I felt defeated and angry, but also needed to focus on my own recovery and healing. Everything hurt. I had little appetite and over the next several weeks saw my weight go from 168 pounds to under 150. Late night anxiety attacks continued and drove me out of the house (sometimes in the rain) in the late–night and early–morning hours. Tammy would frequently join me as I paced in the dark up and down the streets of our neighborhood.
Mike embarked on a full–out battle against his cancer. I went back home to Kansas City and slowly transitioned back to my career over the next several months. Gratefully, my friends and colleagues helped keep my practice afloat and my company was very supportive during my leave of absence.
Although we kept in touch by phone and email, I saw Mike only once more. Nearly six months following our transplant surgery to save his life, I received a call from Mike’s best friend Ed. He asked when I planned to visit. I told Ed that I had scheduled a flight the following month. “Please come now,” he said. Two days later at Mike’s home was a night I will never forget. I walked through the door to see a man I could hardly recognize. Cancer had depleted his body to skeletal proportions. But, his spirit remained strong. Mike’s first words to me were, “Let me see your scar.” In the fight of his life his concern was for me. Mike had to see for himself that I was healed and well again. I know he set goals to help him keep fighting for another week, another day. Seeing me walk through the door healthy again was one of those goals, and he reached it. Of course, Mike wasn’t supposed to drink champagne, but we all knew what this night was. Mike and I, his wife Karen and his best friend Ed all sat around the kitchen table. We toasted to our lives and friendship. Speaking through his pain was difficult, but Mike had planned this night and he prepared a toast: “Tonight, gathered at this table are some of the most important people in my life. I particularly want to toast Andy Heath for the most courageous and selfless act anyone could do for me—to risk his life so that I might live and so that my children could have their father. Thank you and I love you. I am forever grateful. I honor you.”
Karen woke me early in the morning to help her take Mike to the hospital. That was the last time I saw him alive. Mike’s death wasn’t peaceful. He never gave up the fight. Only two years after we met at the top of the World Trade Center in New York, Mike graduated from this world on the final weekend of our coaching program.
For a long time I struggled with understanding the purpose of our efforts. Never regretting my decision, but still feeling defeated and angry. I would talk to people about it, but privately never wanted to. At this point, I was healing physically and my wife and I were pretty much on our own. With my liver in tact and only my gall bladder [End Page 16] removed (I was informed pre–surgery that the gall bladder would be in the way and they planned to remove it), the transplant center didn’t need to keep track of me any longer. There wasn’t anyone I knew who could share my experience; no one I knew who could understand it. Had the transplant been successful, I believe my healing time would have been more rapid. But I felt guilty for gaining strength while Mike was growing weaker. Many months passed before I could complete a full day of activity like I used to. I became frustrated and disappointed when I heard or read about other successful living liver transplants and how quickly everyone was feeling great and alive again. Of course, I was happy for them, but I wanted their experience for us. My pain lingered.
More physical setbacks found their way to my recovery. Due to the lack of muscular support from the 17–inch incision across my abdomen, 14 bone fragments broke from my vertebrae and become lodged in my sciatic nerve. Pain was severe enough that I could barely walk before undergoing surgery to remove the fragments. Thankfully, that surgery was a complete success.
I became accustomed to the lack of feeling in my hand and fingers. There is also a five inch section of my abdomen that has no feeling. Every other liver transplant donor or recipient I’ve met has confirmed the same numbness across their abdomen. Over the years I developed intensely painful adhesions deep within my incision. The pain level would rise and fall depending on the activity I engaged in or even the volume of food I would consume. The one constant was that it was always with me, 24/7. Doctors told me if the adhesions grew severe enough, it may require a surgical procedure. Fortunately, they disappeared after ten years—about the same time the feeling came back in my fingers. Odd coincidence.
I was never pressured to becoming a living donor. I believe I was well–informed and prepared for a successful surgery; and a successful surgery is where I wanted my focus. What I didn’t know is that I would think of Mike and our shared experience every single day for the rest of my life. I am grateful for that. He is a part of who I am now. Part of who I’ve become. Given the same circumstances—even knowing all I know now, I would do the same again for Mike—in a heartbeat.
People have asked me what I would change about the donation process; what I wish could have been done differently. That’s easy. I would have saved Mike’s life.